Wow! We've been crazy busy around here for the last week or so. And I am pretty sure this is the only 5 minutes I am going to have for the next week to sit down and write as well. So, quick updates and then I'm outta here:
1 - New Solar Screens are AWESOME!!!!!! If you don't have them and you live in Texas, you should plan on getting some as soon as humanly possible. We are amazed at how much cooler our house is already and the best part is that the outside of my house looks like it got a face lift. If you don't know better, you would think I got fabulous new windows. Love it, love it, love it!
2 - I finally had Scooter's ARD meeting last Monday and because of a scheduling snafu, Scott couldn't be there. Basically, I went in there and got overwhelmed by the fact that they had completely reversed what I had originally been told about his proposed placement and schedule and wanted to put him in a PPCD Kindergarten classroom full time with only 15 minutes of mainstream per day. I stiffened my back when I heard 15 minutes and put up a fight and was granted an increase to 30 minutes. In a daze, I signed their papers and left. Then I got mad, sad and confused.
After consulting with a few professionals as well as friends, I emailed the next day and told the school that I was extremely uncomfortable with the level of services proposed and requested a new ARD meeting. They phoned me to ask what in particular I was looking for. I informed them that Scooter has no cognitive delays and 2 people who were not in this meeting had observed him for 2 1/2 hours only and were assuming he needed the max amount of services based on a number scale instead of seeing what he COULD do first. My basic feeling is that they were automatically giving him the most amount of services in areas that he functions normally or even above average. Anyway, it sounds like they are going to give me what I want, with only a maximum of 1 hour per week being pulled out of normal class for speech and communication therapy.
The new ARD meeting is tomorrow. Scott can't make that one either, but I am much more confident this time and prepared to exert my influence. (Turns out my input as a parent carries the same weight as their combined opinions.) I am prepared to revisit the situation after the first 6 weeks of school and concede if he needs help somewhere else. I just want to give him the chance to succeed first instead of assuming he can't succeed.
3 - Scott had Wednesday off and I was a bad mom and called Tyler into school as sick when he was perfectly healthy (I swear I have never done this before and taken the unexcused absences if necessary, but what's one little itty bitty time? Right?). We all drove up to the family Lake House in Texoma to clean it out in preparation for this weekend. It was a long grueling day and I'll spare you some of the more icky details of what we found, but I was so glad that we had taken the time during the week so we didn't have to deal with it on our holiday. There was a bit of weather drama in there too when Scott & Tyler drove up the night before through vicious storms and I had to put Scooter & Riley in a bathtub when sirens went off here at home. All is well though and everyone was safe.
4 - Scott got to enjoy a VIP pavillion booth at the Byron Nelson on Saturday and I took the boys to a birthday party. Tyler spent Friday night with a friend and then that dad got them up at 5 am and drove them to Arlington so they could camp out and be part of a video game tournament. Both were eliminated in the first round, Tyler by someone who hadn't exactly cheated but had used questionable means to build the powers of his characters (evidently a no-no, but I have no clue). Eventually we all met up and got ourselves to the Lake House in Texoma. We had a great weekend, enjoying our family and friends that were there.
The private beach at our club is usually packed on Memorial Day weekend, but not this time. It was fairly quiet and the kids had a wonderful time playing in the sand and swimming. Riley 'surfed' on a wave board with some assistance and then we outfitted him in a life jacket so he could play in the extensive shallows on his own (You have to wade out a good 100-150 yards before the water is deeper than an adult's knees or thighs). Tyler spent hours swimming and playing with his cousin, Laney, and reacquainting himself with a few of his strokes. Scooter got in the water a little bit, but mostly played in the sand. Actually, he had no qualms about the sand at all this year and even rolled in it on Saturday which is a huge triumph for his SI. Normally we have to coax him and he spends most of the time on a chair or towel, touching as little of the sand as possible. Yay for OT!
Tyler also got to go fishing several times with his Uncle Billy and our friend from way way back, Brandon on Brandon's boat. On Saturday, Tyler caught 3 large and very different fish. I know for sure one was a Striper and another was a Black Crappie, but I never did hear what the 3rd was. On Saturday night, in addition to our Brisket and Salad, we had a small fish fry with all that was caught. Tyler tried the fish he was responsible for and pronounced it great. Since he normally doesn't eat fish, this was a pretty big deal as well. Brandon snapped a photo, but I am still waiting for him to send it to me. And yes, I completely forgot my camera and I have absolutely no pictures from this weekend. Sigh.
5 - OT is awesome! Seriously. I know Scooter has been making progress, but it isn't visible for stretches and then wham! you see a bunch all at once. Last week he started using his 3 finger hold on his pen without prompting and even showed off for me at home. He went from not touching sand with Ms. Lauren very much to walking on the beach without shoes with no warm up time at all on Wednesday. On Friday, he ASKED Ms. Lauren to play in the sand. I had to take him to the doctor on Friday for a swollen foot (reaction to an ant bite) and they were so busy we saw someone we never have before. Scooter spoke to both the nurse and the doctor without prompting and even made some eye contact. I kind of felt like I had a different kid for a minute there!
My friend says that as we deal with his SI, he will relax more and be able to do those things he couldn't beforehand, even when he wanted to. Imagine that he was looking at the world through a glass partition, wanting to reach out but not being able to because of his sensory issues, we are working hard to remove the partition. Even hearing him talk through the phone, she says to her he sounds more relaxed. I think so too! He yelled goodbye and waved at Tyler and his dad the other night and I am not sure he's ever spoken that openly to Brian before. I know I have to prepare myself for some regression when he starts school, but I am so happy that we are making so much progress right now. Smelling and Tasting are just around the corner, I can't wait until we get there. I am so proud of Scooter and how hard he is working! Occupational Therapy is top on my list of best money ever spent, at least this week!
So that's our week in a nutshell. I am knee-deep in laundry as I try to prepare for our next adventure. I have 5 appointments in the next 24 hours and I also have to clean up the house a bit and pack all of us up for a long weekend. My tire has a slow leak I need fixed and oh yeah, I better pay the bills too! We leave tomorrow for Austin and then San Antonio. We are really looking forward to getting away as a family for some fun time. I only have one more morning to get up to the alarm for a school day as we are not sending Tyler on his last day (I worried about this a tiny bit until I saw their planned schedule that day - geez what a waste! He's not missing ANYTHING!). There is a ton to do and literally not enough hours in the day. Getting 5 of us packed, ready and out of town is not an easy task, but I am up to the challenge!
I hope you all had a wonderful holiday weekend! I promise I'll remember my camera this weekend so I can show off pictures of the kids at Sea World and the Alamo!
Love and God Bless!
Tuesday, May 31, 2011
Friday, May 20, 2011
Bad Mood Rising, or maybe just My Crazy Luck . . .
This was supposed to be a light week for me. When I studied my calendar last weekend and looked ahead, the only things I saw on it were our normal OT appointments and one parent/teacher conference for Tyler. I really thought I would be caught up on laundry, have sparkling floors and tackle a couple of organizational projects I wanted done before summer begins. Instead I have been on a roller coaster ride of repairmen and bleeding wounds.
Monday was spent swimming in piles of laundry. Every time I started to make headway in the last week someone peed on something, puked on something or spilled something bright and colorful on something. I have only seen the piles grow, not diminish for quite some time. Enough laundry that I needed to spend at least one day at home doing nothing but sorting, switching and folding laundry. Laundry and diligently watching and deleting shows from my DVR as I had reached the 'danger' mark for max number of recordings. (Last year I lost all my recordings in the spring thanks to a DVR goof and I don't want that to happen again. I live on catching up on the good stuff during a normal rerun season!) Monday was for laundry, period.
On Tuesday, I decided to let my house have a rest and, after our OT appointment, tackle the issue of my mini-van. Just a week and a half beforehand my traveling car repair guy, Bill, had come over to check out my 'Check Engine' light. (And yes, I did say my Traveling Repair Guy. He drives to you to fix your car which makes life so much easier. If you don't have your own TRG, you should get one!) The code on the light had been for catalytic converter, but the van had recently gone over 120K miles and the spark plugs were out of whack or whatever they do. Anyway, he had suggested that we take a step back, do an engine tune up first as those problems would blow out a new converter as well. We did. I got 6 new spark plugs and a new filter for something or other and the code cleared. He told me if the light came back on then I probably still have a problem with the CC so I should then take the van to this muffler place he recommended since that wasn't something he can do working out of his Honda Element. Exactly one week after he did the work, the light came back on. Bill works on a lot of cars in my cul de sac and I saw him that weekend. I told him the light was back on and he said go ahead and take it to the muffler place.
On Tuesday I called this joint and they told me that the 2 guys who do CC's were just standing around so bring the van in and they'll be done in 45 minutes. I got there with my two preschoolers, filled out paperwork and then walked them 2 doors down the service road right past La Quinta to Denny's (there's an old joke on the tip of my tongue, but I am TRYING to let it go) for lunch. Just after we ordered our food the guy called me and said that the engine light code wasn't for the CC, it was for an emissions leak and they needed to do a 'smoke test', and oh by the way they also found a leak in my fuel line, but that wouldn't make the engine light come on.
Mom and Dad had once upon a time replaced the original gas cap on this van with one that locks, had some trouble with check engine lights and then switched it out again with a generic cap that if you don't lock securely will make the check engine light come on for . . . you guessed it: an emissions leak. I had this problem too after 2 months of owning the car and then Bill checked everything and cleared it before I took the van for inspection that year and it never cropped up again. I thought it couldn't hurt to do the smoke test to make sure everything else was fine, but I was more concerned with the fuel line leak that I hadn't known about. Anyway, we finished eating and walked back to the shop to wait.
The kids had brought a couple small toys with which they lost interest in very quickly. It was more fun for them to play with small rocks outside the shop, get drinks from the water cooler every five minutes, ask me about huge tattoos on strangers arms right in front of them and then make rooster noises to try and wake up a gentleman who was snoozing in his chair while he waited for his car. After an hour and a half of this with my car elevated to the ceiling in the garage and no one working on it, I was ready to bolt! Just about the time I was ready to have my dad come pick us up, I saw two guys poking around underneath my van and then they came to talk to me. The one guy who could do this type of work was completely backed up and they had no time to do the test or find the leak in the fuel line. They got my van back out of the garage, told me they had made sure there weren't any hanging hoses or parts, but the leak was very dangerous and would I please come back tomorrow? All while I am piling my two children into their car seats. I was less than thrilled.
I was trying to figure out when I could get back there this week while I drove home and called my TRG, Bill. I explained everything and asked him if that was something he could do. The thing about a TRG is he's only one guy and you don't know where he is on any particular day, but I lucked out and he was at the Auto Zone by my house. He told me to come straight to him. He checked everything out and found the leak immediately. He followed me home, jacked up the car and had me fixed up in about 20 minutes. The line was bent and just had to be straightened, tightened and resealed, but it had been right by the gas tank. Thank goodness no one had sparked near me or thrown a lit cigarette butt under my car. He also said it must have just happened because he had not smelled fuel when he was standing next to my car a few days before. He cleared the light for the emission leak and told me to go to Chrysler for the right gas cap so that this doesn't happen again. I don't need a Catalytic Converter at all and the whole long ordeal cost me $20. Score!
After letting the kids run off some steam in the yard, we all went inside to start laundry and dinner. That was when we discovered that the AC had gone out. Luckily it isn't 100 degrees outside yet, but I can't open my windows (circa 1960 with ridiculously difficult storm windows) by myself so I couldn't get any extra circulation inside besides fans. It was hotter inside than outside. My AC guy is an old family friend, Joe, and I spoke to him at length. He had just been out for a courtesy check of our system for the beginning of summer a few weeks before and everything was hunky-dory. The whole system is only 4 years old. He told me he would be there the next day before noon.
My dad came over Wednesday morning to stay with the little guys while I went to the parent/teacher conference. The day before I had been in the car with just Riley and I had told him 'someone is coming to our house tomorrow, can you guess who?'. 'Nooooo'. 'It's a man . . . a big guy'. 'Noooo'. 'He has a big white beard'. 'Mama! It's Grandpa!' All week now he has started laughing and said 'Mama, it was a guy and a big white beard and it was Grandpa!' I think he liked the silly guessing game with clues. Anyway, Dad came over and I left a check for Joe on the table. By the time I returned Joe hadn't arrived and then he called to say it would be 3 instead. In the meantime, the rep for the solar screen company arrived. I had asked them out to do a quote for me to try and cut our utility bills and also to let my AC have a chance to do it's job well. I was absolutely thrilled with the quote. As the day was heating up, I ran around the house to make sure all the fans were on and when I pulled the cord on the fan in the play room, the globe covering the light fell on my head. Yes, I said that and yes it happened. Luckily it didn't break on my head, but once it hit the floor the edges shattered and it was not usable. Everyone left and I attempted to tackle the laundry as well as the clutter around the house so I could do floors and bathrooms the next day.
It was hot, even with the fans. Most of them are ceiling fans, but I also have a tower fan which is very powerful. This is great, except for when your 3 year old keeps running by and turning it off because it's 'loud'. Joe and his son, John, showed up finally around 4:30. They looked at absolutely everything and couldn't find a reason for the AC to not work. They finally found the problem, it was the outlet the unit was plugged into. It had no power whatsoever. Weird. We ran an extension cord across my kitchen and living room and got the AC running again, but now I had to find an electrician. Angie's List is my newest favorite toy and in no time I found a highly recommended company. Since my AC was running again, I insisted on no rush, but he said he would be here around lunch time the next day.
Honestly, despite the madness of the week I was feeling pretty good when I woke up yesterday morning. After all, I had somehow avoided two potentially very expensive problems already this week with only a $20 price tag. I couldn't get Joe to take any money for even the gas to get to my house, which made me feel bad, but he's like family and he takes that very seriously. I took Scooter to OT and was so prepared I even had a bag of goodies for Riley to munch on and a favorite set of shape puzzles for us to do together while we waited.
It was kind of nice to have some time with just the two of us playing together. Usually Scooter takes the lead on projects and it's hard to tell where Riley is in regards to basic preschool knowledge. Scooter always answers before Riley has a chance to when I ask about colors or shapes or letters. I really enjoyed seeing him matching up the shapes and naming them. I was pleased to find that he even knew he had to put two of the blue diamond pieces together to make a rectangle for some of the pictures. I was also surprised to find that he has an innate skill that Tyler also had at that age (actually younger, but I'm telling you if Riley had it before I couldn't have told you since Scooter is always there helping). Riley would glance at the picture in front of him and say something like 'We need 5 white diamonds' or 'We need 6 green triangles'. He wasn't counting them out, he just looked and knew and he was always correct. Tyler used to do this and it always amazed us when we would get out of our car in a parking lot and at 2 1/2 he would glance around and say 'There are 8 white trucks here'. When we would look around and count, we would find he was absolutely correct. I think this is a really great indicator of the potential for great math skills. I am so happy to know that Riley might have these skills as well. He was also extremely patient with placing the pieces in just the right place since there are no grooves to fit into on this game and everything shifts with the slightest nudge. It's actually Scooter's toy, but Riley really did well with it yesterday on his own.
Anyway, it was the first time I looked at Scooter going off to Kindergarten with hope instead of trepidation. I have worried a lot about the two of them being apart since they are so inseparable now. I knew it could be great in some ways and extremely difficult in others. I am going to love having my little Riley-Bear to myself for the next 2 years. After all, he is my only child that has had to share his time with me since birth, pretty much every day. The other two got a lot of their mama just for themselves, but Riley hasn't had any of that luxury. It's going to be frustrating at times for sure since he's so demanding, but I am really looking forward to getting to know Riley better and seeing what is hidden behind those delightfully devilish little eyes and grin.
As we left the building, the electrician called and said he was on his way. We met up at the house and he was fabulous. He had everything working and my whole system checked out in less than an hour. He found another potential problem and went ahead and fixed that too for no extra charge. He said that with kids in the house he would have come right away when I called if the AC hadn't been on, but since I told him it was on and there was no rush he waited. I will definitely use him again for electric. Very professional and fair. Once I knew that this bill was low and there were no unexpected, crazy charges I called the solar screen company and put in my order.
My mood was so good after my screen order and the electrician left that I decided to tackle one of my organization projects. I emptied my pantry from top to bottom. I had food loaded into laundry baskets and stacked on counters. I had appliances lining the floor in front of my cabinets. I had green grocery bags filled with pasta, beans & rice. I scrubbed the shelves and thought they were so dingy they needed a fresh coat of paint. Hmmm, maybe not the paint. After all, Dad mentioned something about new shelves that were deeper, so I won't put the effort into painting today. My pantry was now spotless, but my kitchen looked like a tornado had blown through. I assessed my storage needs, grabbed the broken fan globe and piled the kids in the car for a run to Home Depot and Target. If you saw me, you might have heard me whistling a happy tune. I was feeling super awesome at this point.
Home Depot was first. I carried my broken globe inside and proceeded to cut my left pinky finger twice on the shattered edges while I was in the store. After I found the replacement bulb, one of those nice old men working in the appliance section fetched me some paper towels to staunch the flow. We made it back to the car where I used my handy-dandy first aid kit to bandage my scratches and then we went across the street to Target. We cruised the aisles for more cereal containers and some plastic bins I thought I could use to organize spice packets and tea bags. Then I let the kids roam the Dollar section for a prize. They had dug out 'pennies' from my spare change and wanted to buy a toy. There was a brief disagreement about the 'real' toy aisle and what those pennies would actually buy before they settled on a set of stampers to 'tattoo' Scooter's arms and a big plastic shovel for Riley to use at the park next time. We loaded up and headed back home.
My finger was stinging and my stomach was growling. My patience was wearing thin and I realized that it was 2:30 and I hadn't eaten since 7. Oops. That's never a good thing. When we got home I stuck a frozen meal in the microwave and tried not to snap at my kids while they asked for stuff that was in the bottoms of laundry baskets. Riley asked for a program on TV in my bedroom while he ate his banana and while a disagreement ensued between the brothers regarding just what they should watch, I found a mess. On the floors I had picked up diligently the day before. Urgh.
They had been looking for pennies, remember? I had gotten down the spare change jar for them. It's one of those canister type glass jars with the clamping mechanism that seals the attached top. Someone had given this to Scott either before we got married or for our wedding. It was painted on the top and said 'Poker Night'. You know, save your change for penny poker night, a big thing in his family. So we have kept our spare change in that jar for almost 6 years. I had asked them not to make a mess, but there was spillage anyway. I could have made them clean it up, but at this point I just wanted to eat my chicken alfredo dish in front of the TV while I watched American Idol from the night before and then finish my pantry. I wanted them settled so I could regain my equilibrium and move on. I also wanted all the spare change off of the floor so I cleaned it up.
After I got all the money back in place, I closed the top of the jar and picked it up as I was getting off of my knees to put it back on Scott's dresser. The jar broke in my hand. I don't know if there was some pressure crack there from before or what, but the weight of the coins made the thing break right in the middle where my hand was holding it. It cut the dickens out of my middle finger on my right hand. I grabbed paper towels, rinsed it out, put on a band-aid and got the kids away from the mess. Then I ate my lunch so I wouldn't pass out while I did anything else. I cleaned up the glass and the change. I bled through 5 bandages in a row. No matter what I did, the thing wouldn't stop bleeding. It was a gouge in the side of my finger and I couldn't believe how much the thing was bleeding. I started doubling up the bandages so that it took a little bit longer to seep through, but it wasn't enough.
The two neighbor girls are home from college. One just finished her sophomore year, Kelly, she used to babysit the kids for me all the time. Her older sister Lauren just graduated as a nurse and is waiting for her assignment to Captain school in the Army. She had gone on a post-graduation trip on Saturday, but I went to ask Kelly if 'Nurse Lauren' was home yet. No. Oh - well, I guess I better go get this looked at huh? Yes, especially since I can't see through the blood to know if there is still glass in there or not. Kelly offered to stay with the kids so I wouldn't have to take 3 boys with me to the emergency room. I did think about urgent care, but I really hate those places. I drove myself to the hospital, texted Mom and Scott and sat down to wait it out with book in hand.
It was a long wait. I wasn't really a priority, of course. Things were calming down from a rush when I got there and I eventually got a stretcher in the hallway for treatment, but then there was another rush of critical cases so I sat there for a very long time. A doctor came up and asked to see my 'boo-boo' like I was a child which I thought was rather insulting. He glanced at it for a heartbeat and told me I needed stitches and stay put. An orderly brought a tray of goodies for that joy and then I waited some more. Finally a PA came by and cleaned the wound with a cotton ball and water and said he couldn't do stitches since it was a gash, not a cut. Right. "We'll just put derma-bond in there and give it a chance to heal and that will help with the pain too." Okay, sounded good to me.
Here's the thing though - that stuff stings! That was worse than getting a needle through skin, believe me. It was worse than the original injury was. Afterwards I sat there waiting for the throbbing to subside and the nurse to discharge me and it occurred to me that no one had disinfected my cut or cleaned it anymore. I did pour some peroxide on it myself earlier, but really every germ that could have been there just got sealed in with the glue. Oh and lint from the various means of staunching the bleeding. They told me to follow up with my doctor on Monday and I think I will so I can be sure there isn't an infection happening in there.
Really, I am not too much of a wimp when it comes to pain, but after 3 hours at the hospital I was very ready for abottle glass of wine when I got home. Scott had gone and picked up tacos for dinner and we crammed into the two clear spots at the kitchen table and around the coffee table to eat. The damn pantry stuff is still bogging down my kitchen and I had to look at it all night. When Tyler tripped over something he made a not so nice remark about it but I reminded him I certainly hadn't planned on having a mine field in the kitchen all night and he adjusted his attitude. I hadn't even unloaded my Target haul before the ER trip so Scott helped me with that too. I asked Scott to put the new globe on the fan so I could at least feel like something got accomplished for the day.
Today I was supposed to drop Bella off at the Vet for her quarterly thyroid test and then pick her up later, but it's thundering out there and I really want to finish my pantry project, so I pushed that until Monday. Guess I won't be getting to my floors today after all. I am hoping for an uneventful day. And on the up side, my solar screens could be installed as soon as tomorrow, although it will probably be Monday or Tuesday. I keep thinking of old classic rock songs this week like 'Bad Mood Rising' and for some reason CCR's lyrics 'You better hidey-hide, You better Jump and Run . . .'! This week has turned out completely insane and I didn't get half of things I wanted to accomplished. Oh well, there's always next week and the only thing on my calendar for that is two OT appointments and Bella's test, so far.
Please pray for me! I don't know what is going on with me this week, but I need a teeny tiny bit of peace before school ends and we head out on a family vacation to San Antonio. Scott has to work on Saturday and that always makes things more challenging around here, but I did just find out I will get my hair done tomorrow which helps. If anyone wants to distract Scooter and Riley with a play date or something fun, please let me know! I am going to do a fun girly thing on Sunday with my buds Liz and Melody which will be nice and I will be sure to fill you in on what we are doing and why next week because it's kind of funny really. I have decided to take the DART train to meet them and avoid driving thanks to my track record this week. Oy! What a crazy week!
Love and God Bless!
Monday was spent swimming in piles of laundry. Every time I started to make headway in the last week someone peed on something, puked on something or spilled something bright and colorful on something. I have only seen the piles grow, not diminish for quite some time. Enough laundry that I needed to spend at least one day at home doing nothing but sorting, switching and folding laundry. Laundry and diligently watching and deleting shows from my DVR as I had reached the 'danger' mark for max number of recordings. (Last year I lost all my recordings in the spring thanks to a DVR goof and I don't want that to happen again. I live on catching up on the good stuff during a normal rerun season!) Monday was for laundry, period.
On Tuesday, I decided to let my house have a rest and, after our OT appointment, tackle the issue of my mini-van. Just a week and a half beforehand my traveling car repair guy, Bill, had come over to check out my 'Check Engine' light. (And yes, I did say my Traveling Repair Guy. He drives to you to fix your car which makes life so much easier. If you don't have your own TRG, you should get one!) The code on the light had been for catalytic converter, but the van had recently gone over 120K miles and the spark plugs were out of whack or whatever they do. Anyway, he had suggested that we take a step back, do an engine tune up first as those problems would blow out a new converter as well. We did. I got 6 new spark plugs and a new filter for something or other and the code cleared. He told me if the light came back on then I probably still have a problem with the CC so I should then take the van to this muffler place he recommended since that wasn't something he can do working out of his Honda Element. Exactly one week after he did the work, the light came back on. Bill works on a lot of cars in my cul de sac and I saw him that weekend. I told him the light was back on and he said go ahead and take it to the muffler place.
On Tuesday I called this joint and they told me that the 2 guys who do CC's were just standing around so bring the van in and they'll be done in 45 minutes. I got there with my two preschoolers, filled out paperwork and then walked them 2 doors down the service road right past La Quinta to Denny's (there's an old joke on the tip of my tongue, but I am TRYING to let it go) for lunch. Just after we ordered our food the guy called me and said that the engine light code wasn't for the CC, it was for an emissions leak and they needed to do a 'smoke test', and oh by the way they also found a leak in my fuel line, but that wouldn't make the engine light come on.
Mom and Dad had once upon a time replaced the original gas cap on this van with one that locks, had some trouble with check engine lights and then switched it out again with a generic cap that if you don't lock securely will make the check engine light come on for . . . you guessed it: an emissions leak. I had this problem too after 2 months of owning the car and then Bill checked everything and cleared it before I took the van for inspection that year and it never cropped up again. I thought it couldn't hurt to do the smoke test to make sure everything else was fine, but I was more concerned with the fuel line leak that I hadn't known about. Anyway, we finished eating and walked back to the shop to wait.
The kids had brought a couple small toys with which they lost interest in very quickly. It was more fun for them to play with small rocks outside the shop, get drinks from the water cooler every five minutes, ask me about huge tattoos on strangers arms right in front of them and then make rooster noises to try and wake up a gentleman who was snoozing in his chair while he waited for his car. After an hour and a half of this with my car elevated to the ceiling in the garage and no one working on it, I was ready to bolt! Just about the time I was ready to have my dad come pick us up, I saw two guys poking around underneath my van and then they came to talk to me. The one guy who could do this type of work was completely backed up and they had no time to do the test or find the leak in the fuel line. They got my van back out of the garage, told me they had made sure there weren't any hanging hoses or parts, but the leak was very dangerous and would I please come back tomorrow? All while I am piling my two children into their car seats. I was less than thrilled.
I was trying to figure out when I could get back there this week while I drove home and called my TRG, Bill. I explained everything and asked him if that was something he could do. The thing about a TRG is he's only one guy and you don't know where he is on any particular day, but I lucked out and he was at the Auto Zone by my house. He told me to come straight to him. He checked everything out and found the leak immediately. He followed me home, jacked up the car and had me fixed up in about 20 minutes. The line was bent and just had to be straightened, tightened and resealed, but it had been right by the gas tank. Thank goodness no one had sparked near me or thrown a lit cigarette butt under my car. He also said it must have just happened because he had not smelled fuel when he was standing next to my car a few days before. He cleared the light for the emission leak and told me to go to Chrysler for the right gas cap so that this doesn't happen again. I don't need a Catalytic Converter at all and the whole long ordeal cost me $20. Score!
After letting the kids run off some steam in the yard, we all went inside to start laundry and dinner. That was when we discovered that the AC had gone out. Luckily it isn't 100 degrees outside yet, but I can't open my windows (circa 1960 with ridiculously difficult storm windows) by myself so I couldn't get any extra circulation inside besides fans. It was hotter inside than outside. My AC guy is an old family friend, Joe, and I spoke to him at length. He had just been out for a courtesy check of our system for the beginning of summer a few weeks before and everything was hunky-dory. The whole system is only 4 years old. He told me he would be there the next day before noon.
My dad came over Wednesday morning to stay with the little guys while I went to the parent/teacher conference. The day before I had been in the car with just Riley and I had told him 'someone is coming to our house tomorrow, can you guess who?'. 'Nooooo'. 'It's a man . . . a big guy'. 'Noooo'. 'He has a big white beard'. 'Mama! It's Grandpa!' All week now he has started laughing and said 'Mama, it was a guy and a big white beard and it was Grandpa!' I think he liked the silly guessing game with clues. Anyway, Dad came over and I left a check for Joe on the table. By the time I returned Joe hadn't arrived and then he called to say it would be 3 instead. In the meantime, the rep for the solar screen company arrived. I had asked them out to do a quote for me to try and cut our utility bills and also to let my AC have a chance to do it's job well. I was absolutely thrilled with the quote. As the day was heating up, I ran around the house to make sure all the fans were on and when I pulled the cord on the fan in the play room, the globe covering the light fell on my head. Yes, I said that and yes it happened. Luckily it didn't break on my head, but once it hit the floor the edges shattered and it was not usable. Everyone left and I attempted to tackle the laundry as well as the clutter around the house so I could do floors and bathrooms the next day.
It was hot, even with the fans. Most of them are ceiling fans, but I also have a tower fan which is very powerful. This is great, except for when your 3 year old keeps running by and turning it off because it's 'loud'. Joe and his son, John, showed up finally around 4:30. They looked at absolutely everything and couldn't find a reason for the AC to not work. They finally found the problem, it was the outlet the unit was plugged into. It had no power whatsoever. Weird. We ran an extension cord across my kitchen and living room and got the AC running again, but now I had to find an electrician. Angie's List is my newest favorite toy and in no time I found a highly recommended company. Since my AC was running again, I insisted on no rush, but he said he would be here around lunch time the next day.
Honestly, despite the madness of the week I was feeling pretty good when I woke up yesterday morning. After all, I had somehow avoided two potentially very expensive problems already this week with only a $20 price tag. I couldn't get Joe to take any money for even the gas to get to my house, which made me feel bad, but he's like family and he takes that very seriously. I took Scooter to OT and was so prepared I even had a bag of goodies for Riley to munch on and a favorite set of shape puzzles for us to do together while we waited.
It was kind of nice to have some time with just the two of us playing together. Usually Scooter takes the lead on projects and it's hard to tell where Riley is in regards to basic preschool knowledge. Scooter always answers before Riley has a chance to when I ask about colors or shapes or letters. I really enjoyed seeing him matching up the shapes and naming them. I was pleased to find that he even knew he had to put two of the blue diamond pieces together to make a rectangle for some of the pictures. I was also surprised to find that he has an innate skill that Tyler also had at that age (actually younger, but I'm telling you if Riley had it before I couldn't have told you since Scooter is always there helping). Riley would glance at the picture in front of him and say something like 'We need 5 white diamonds' or 'We need 6 green triangles'. He wasn't counting them out, he just looked and knew and he was always correct. Tyler used to do this and it always amazed us when we would get out of our car in a parking lot and at 2 1/2 he would glance around and say 'There are 8 white trucks here'. When we would look around and count, we would find he was absolutely correct. I think this is a really great indicator of the potential for great math skills. I am so happy to know that Riley might have these skills as well. He was also extremely patient with placing the pieces in just the right place since there are no grooves to fit into on this game and everything shifts with the slightest nudge. It's actually Scooter's toy, but Riley really did well with it yesterday on his own.
Anyway, it was the first time I looked at Scooter going off to Kindergarten with hope instead of trepidation. I have worried a lot about the two of them being apart since they are so inseparable now. I knew it could be great in some ways and extremely difficult in others. I am going to love having my little Riley-Bear to myself for the next 2 years. After all, he is my only child that has had to share his time with me since birth, pretty much every day. The other two got a lot of their mama just for themselves, but Riley hasn't had any of that luxury. It's going to be frustrating at times for sure since he's so demanding, but I am really looking forward to getting to know Riley better and seeing what is hidden behind those delightfully devilish little eyes and grin.
As we left the building, the electrician called and said he was on his way. We met up at the house and he was fabulous. He had everything working and my whole system checked out in less than an hour. He found another potential problem and went ahead and fixed that too for no extra charge. He said that with kids in the house he would have come right away when I called if the AC hadn't been on, but since I told him it was on and there was no rush he waited. I will definitely use him again for electric. Very professional and fair. Once I knew that this bill was low and there were no unexpected, crazy charges I called the solar screen company and put in my order.
My mood was so good after my screen order and the electrician left that I decided to tackle one of my organization projects. I emptied my pantry from top to bottom. I had food loaded into laundry baskets and stacked on counters. I had appliances lining the floor in front of my cabinets. I had green grocery bags filled with pasta, beans & rice. I scrubbed the shelves and thought they were so dingy they needed a fresh coat of paint. Hmmm, maybe not the paint. After all, Dad mentioned something about new shelves that were deeper, so I won't put the effort into painting today. My pantry was now spotless, but my kitchen looked like a tornado had blown through. I assessed my storage needs, grabbed the broken fan globe and piled the kids in the car for a run to Home Depot and Target. If you saw me, you might have heard me whistling a happy tune. I was feeling super awesome at this point.
Home Depot was first. I carried my broken globe inside and proceeded to cut my left pinky finger twice on the shattered edges while I was in the store. After I found the replacement bulb, one of those nice old men working in the appliance section fetched me some paper towels to staunch the flow. We made it back to the car where I used my handy-dandy first aid kit to bandage my scratches and then we went across the street to Target. We cruised the aisles for more cereal containers and some plastic bins I thought I could use to organize spice packets and tea bags. Then I let the kids roam the Dollar section for a prize. They had dug out 'pennies' from my spare change and wanted to buy a toy. There was a brief disagreement about the 'real' toy aisle and what those pennies would actually buy before they settled on a set of stampers to 'tattoo' Scooter's arms and a big plastic shovel for Riley to use at the park next time. We loaded up and headed back home.
My finger was stinging and my stomach was growling. My patience was wearing thin and I realized that it was 2:30 and I hadn't eaten since 7. Oops. That's never a good thing. When we got home I stuck a frozen meal in the microwave and tried not to snap at my kids while they asked for stuff that was in the bottoms of laundry baskets. Riley asked for a program on TV in my bedroom while he ate his banana and while a disagreement ensued between the brothers regarding just what they should watch, I found a mess. On the floors I had picked up diligently the day before. Urgh.
They had been looking for pennies, remember? I had gotten down the spare change jar for them. It's one of those canister type glass jars with the clamping mechanism that seals the attached top. Someone had given this to Scott either before we got married or for our wedding. It was painted on the top and said 'Poker Night'. You know, save your change for penny poker night, a big thing in his family. So we have kept our spare change in that jar for almost 6 years. I had asked them not to make a mess, but there was spillage anyway. I could have made them clean it up, but at this point I just wanted to eat my chicken alfredo dish in front of the TV while I watched American Idol from the night before and then finish my pantry. I wanted them settled so I could regain my equilibrium and move on. I also wanted all the spare change off of the floor so I cleaned it up.
After I got all the money back in place, I closed the top of the jar and picked it up as I was getting off of my knees to put it back on Scott's dresser. The jar broke in my hand. I don't know if there was some pressure crack there from before or what, but the weight of the coins made the thing break right in the middle where my hand was holding it. It cut the dickens out of my middle finger on my right hand. I grabbed paper towels, rinsed it out, put on a band-aid and got the kids away from the mess. Then I ate my lunch so I wouldn't pass out while I did anything else. I cleaned up the glass and the change. I bled through 5 bandages in a row. No matter what I did, the thing wouldn't stop bleeding. It was a gouge in the side of my finger and I couldn't believe how much the thing was bleeding. I started doubling up the bandages so that it took a little bit longer to seep through, but it wasn't enough.
The two neighbor girls are home from college. One just finished her sophomore year, Kelly, she used to babysit the kids for me all the time. Her older sister Lauren just graduated as a nurse and is waiting for her assignment to Captain school in the Army. She had gone on a post-graduation trip on Saturday, but I went to ask Kelly if 'Nurse Lauren' was home yet. No. Oh - well, I guess I better go get this looked at huh? Yes, especially since I can't see through the blood to know if there is still glass in there or not. Kelly offered to stay with the kids so I wouldn't have to take 3 boys with me to the emergency room. I did think about urgent care, but I really hate those places. I drove myself to the hospital, texted Mom and Scott and sat down to wait it out with book in hand.
It was a long wait. I wasn't really a priority, of course. Things were calming down from a rush when I got there and I eventually got a stretcher in the hallway for treatment, but then there was another rush of critical cases so I sat there for a very long time. A doctor came up and asked to see my 'boo-boo' like I was a child which I thought was rather insulting. He glanced at it for a heartbeat and told me I needed stitches and stay put. An orderly brought a tray of goodies for that joy and then I waited some more. Finally a PA came by and cleaned the wound with a cotton ball and water and said he couldn't do stitches since it was a gash, not a cut. Right. "We'll just put derma-bond in there and give it a chance to heal and that will help with the pain too." Okay, sounded good to me.
Here's the thing though - that stuff stings! That was worse than getting a needle through skin, believe me. It was worse than the original injury was. Afterwards I sat there waiting for the throbbing to subside and the nurse to discharge me and it occurred to me that no one had disinfected my cut or cleaned it anymore. I did pour some peroxide on it myself earlier, but really every germ that could have been there just got sealed in with the glue. Oh and lint from the various means of staunching the bleeding. They told me to follow up with my doctor on Monday and I think I will so I can be sure there isn't an infection happening in there.
Really, I am not too much of a wimp when it comes to pain, but after 3 hours at the hospital I was very ready for a
Today I was supposed to drop Bella off at the Vet for her quarterly thyroid test and then pick her up later, but it's thundering out there and I really want to finish my pantry project, so I pushed that until Monday. Guess I won't be getting to my floors today after all. I am hoping for an uneventful day. And on the up side, my solar screens could be installed as soon as tomorrow, although it will probably be Monday or Tuesday. I keep thinking of old classic rock songs this week like 'Bad Mood Rising' and for some reason CCR's lyrics 'You better hidey-hide, You better Jump and Run . . .'! This week has turned out completely insane and I didn't get half of things I wanted to accomplished. Oh well, there's always next week and the only thing on my calendar for that is two OT appointments and Bella's test, so far.
Please pray for me! I don't know what is going on with me this week, but I need a teeny tiny bit of peace before school ends and we head out on a family vacation to San Antonio. Scott has to work on Saturday and that always makes things more challenging around here, but I did just find out I will get my hair done tomorrow which helps. If anyone wants to distract Scooter and Riley with a play date or something fun, please let me know! I am going to do a fun girly thing on Sunday with my buds Liz and Melody which will be nice and I will be sure to fill you in on what we are doing and why next week because it's kind of funny really. I have decided to take the DART train to meet them and avoid driving thanks to my track record this week. Oy! What a crazy week!
Love and God Bless!
Monday, May 16, 2011
A,B,C’s and 1,2,3’s: Our Journey of Discovery, Phase 2
My life is alphabet soup.
My kid is delightfully quirky and unique.
I really appreciate all of your supportive comments from Friday’s post. This process has been overwhelming some days and frustrating others. The SI issues were concerning to us in a big way, but I probably would have shared them with you all sooner if we hadn’t run into another huge diagnosis like it was a brick wall last month. That one has taken some time to begin processing and accepting. Even though SI is challenging it gave me a lot of hope to have a plan and a course of action. I freely admit that I am not anywhere near that point with our newest batch of alphabet soup.
In my search for services for Scooter I was encouraged to contact the school district PPCD (Pre-School Program for Children with Disabilities) Department to see what would be available for him. At that time I thought that our OT was going to cost more than our mortgage each month and I was searching for other avenues to supplement his treatments that would alleviate the pressure financially. It took a while to find the right person to talk to in the right department, but in early March I finally got the right office.
I explained Scooter and his SI issues and my concerns for how he was going to handle something like lunch or gym during the day and also queried about possible OT at school to supplement treatments. They asked a lot of questions and then they explained to me that as therapists and psychologists they were very aware of SI and its effects on kids in the classroom. They also explained that the state of Texas does not recognize SI as an official disability except for when it falls under the autism spectrum.
This wasn’t really surprising to me. That’s how the medical community sees the whole matter as well. They recognize that it’s a real thing, but they don’t recognize it as its OWN condition yet. SI can be a part or portion of many other developmental disorders and that is usually how it is treated or at least billed for. It makes finding and getting treatments very difficult in certain situations.
They wanted to evaluate Scooter, but they could only do it under specified codes for the state and so they had to do the evaluation as an Autism Spectrum evaluation. They further explained that I shouldn’t worry about that as if he didn’t fall on the spectrum but had obvious sensory issues that would inhibit him in the classroom they could either recommend services based on their severity or at the very least notify the principal at his incoming school of a potential problem to watch out for so that little signs were not ignored. I liked that idea a lot. I wanted them to be aware of a potential mine field so they could be prepared.
Between the two OT clinics and my internet mining operation, I have now filled out 4 or 5 full sensory integration questionnaires about my child. They are very lengthy and detailed. There are over 20 pages of questions related to particular activities and senses and how often your child may or may not exhibit behaviors. There are detailed questions regarding every single stage of your child’s development from infancy to present. There is a lot of focus on the actual birth experience you had with these children and events in their first few weeks and months. When I was told that I would be receiving paperwork and a questionnaire from the PPCD department prior to my appointment, I wasn’t alarmed. It came in the mail just 3 days later and because my evaluation appointment was over a month away, I set it aside for a while.
I did my best to coordinate the PPCD evaluation with the one for our new clinic. Technically if the district identifies a child with a need for services they are obligated to provide them immediately, despite having a month long window to get on the school administrator’s calendar. I kind of felt like there might be an opportunity for him to get some OT during the last month of school and maybe I could eliminate a session or two from my paid-for schedule. They were both set for early April and a couple of weeks beforehand I pulled out the PPCD paperwork to fill out.
The symptom questionnaire was different from the SI profile since it was an Autism and Aspergers symptom profile. As I began, I thought that I would really only see positive and frequent behaviors in the sensory areas. Therefore, I was a little concerned when I realized that wasn’t the case and Scooter had quite a few behaviors that were telling in quite a few different areas. They asked a lot of the same questions on other forms regarding his development and birth, but there were other, slightly different, questions that made the hairs on my arms stand up.
There is a belief with SI that something happens to kids during their development time as babies to make them more sensitive. Somewhere along the line there is a misfire of neurons or a non-fire of neurons that keeps these kids from learning how to process sensory input properly and therefore with therapy the neurons can be trained into firing, so to speak. Early and frequent therapy can help build the pathways. It works better for some than others but the earlier you catch it and treat a child, the more neurons can be brought back to life. That’s a pretty rough interpretation of the data, but hopefully you get what I am saying. So therapists want to make sure there wasn’t anything hugely unusual or alarming with a birth, but they are more concerned with what happens during the first year. For us, Scooter crawled late and then not very long. He was quick to get to his feet and that probably was one of the signs of his tactile defensiveness beginning or even possibly a cause since crawling requires a lot of touching different surfaces in different situations. By itself, this isn’t a big deal, but combined with other factors it can be an indicator.
The AU questions were more focused around the birth and the first few weeks and then later development, like when he learned to recognize letters, etc. Both questionnaires touched on all the same areas and the differences were subtle, but having done so many already I could tell what was different right away. When I started filling in information about the bump on Scooters head when he was born that took 6 weeks to fully disappear and details regarding his severe choking issues as a newborn, I remembered that one of the therapists at the first clinic we had visited had been very concerned about those as well, while the owner and PT that were evaluating for sensory issues had not been concerned at all.
It was like working a huge jigsaw puzzle with 1000 pieces, but you don’t have the picture on the box to work from, to see where you are going and what you are going to end up with. I mean, I shouldn’t be worried, right? My kid is obviously not Autistic. That is what I was saying – to others and to myself. There is no way. Scooter is extremely affectionate and loving. He gives us eye contact, even if he doesn't for others. He talks like an adult half the time and he’s so smart. Right! Not my kid. And really, for our generation, it’s understandable. Our first images of what Autism looked like came in the form of Dustin Hoffman and Rain Man: Genius and completely detached, must be institutionalized to be happy. Granted, we’ve seen a lot more over the years to know that this is extreme, but it’s kind of hard to get that image out of our minds.
Still, I was a little worried so I did what I always do when I am worried, I read. I found some more checklists to tell me whether or not my child might possibly fall on a spectrum or not, they just were not as detailed as everything is so subjective in this area. Because he is so articulate I was consistently led to information about Aspergers. Everything I found pointed to the possibility that my son might fall on the borderline of this particular disorder. And I was calmed because I didn’t think it was an obvious problem. He was always one question shy of ‘You should have him evaluated’. I found out eventually that I was answering two of these questions incorrectly.
Ahhh, denial. Isn’t it wonderful? The thing is, we had lots of issues that we had chalked up to falling within either very stubborn or shy child or now within SI, not wanting to see that the SI might be part of a bigger picture. Before Scooter had his PPCD evaluation, I had prepared myself for the fact that he just might fall on the lowest (or technically highest, but that gets confusing for the regular person like me so we will keep it on the obvious) end of the spectrum, borderline. That’s what I thought, borderline. Like maybe he would qualify just enough for services and help, but he wouldn’t really have any real problems in life from it.
We were there for almost three hours and they gave Scooter plenty of time to warm up and be ready to play while they plied me with about 600 questions and asked for as much detail as I could give them. I got to talk about Scooters meltdowns that are definitely not in the area of ‘spoiled child normal temper tantrum’; when our whole life comes to a grinding halt for 45 minutes because there was some process we didn’t fulfill that only existed inside his head. I had the pleasure of explaining in excruciating detail the enormously pain filled social experiences we have had in situations like soccer or birthday parties or swim lessons. How Scooter wants to participate, but can’t. It was just downright thrilling to recount how hard transitions are for Scooter and how long he takes to warm up to people and situations. (Sorry for the sarcasm, but it was tedious.)
While my son lay in the floor fifteen feet away transforming a small Transformer backwards and forwards over and over again, they observed him gently while they focused on me. I knew they had already tested some of his basic knowledge and interaction skills when we first came in the door by disguising it in the form of play and excitement. They had tried to give him another transformer to play with as well, but he waited about 30 minutes before he reached out to touch it. Eventually they called him over and with some severe prompting he showed the ladies how to transform their Optimus Prime, but he wouldn’t make eye contact.
The evaluation involved Scooter participating with them, or in our case not participating, and then they observed the two of us playing together for a while. We drew and colored and played Go Fish. They gave me another form to fill out, more questions. This one was clearly labeled as an Aspergers profile. The three women evaluators went behind closed doors for a while and then came out to talk to me while Scooter played with some more toys.
I had prepared myself for this borderline, ‘maybe’, diagnosis so I had come alone. I wish I hadn’t. I wish Scott had been sitting there with me answering questions and then hearing what they had to say. It was so much harder later trying to recount it. Hearing it was hard, telling it is harder. The women were gentle and kind, but when they told me that my son fell on the high end of the mild to moderate range of the Autism spectrum and that it will probably look like Aspergers to us eventually, it felt like someone had punched me in the stomach. They stressed how intelligent Scooter is and how high his verbal and vocabulary skills were (like a 2nd grader, and he was being quiet and shy). They started talking about mainstream kindergarten coupled with PPCD services and all of it started blurring together for me. I really tried not to cry, but I know that I was not entirely successful.
Autism Spectrum Disorder. I still have a hard time saying it out loud. I am likely to say things like ‘It looks like Scooter might fall on the Autism spectrum’ or ‘It’s possible that he has Aspergers’ rather than ‘Scooter has Autism’. I spent a lot of those first nights watching him fall asleep and praying to ask for things like a ‘normal’ life or the opportunity of a career and a family if that’s what he wants. I had days that I cried and worried and others that went so well I wondered if they were all wrong about Scooter. I have moments when I want to believe the brief, misguided comments of well meaning people who think he will someday outgrow these behaviors.
For the record, the two questions I was unknowingly answering incorrectly on those profiles were about repetitive random movement and obsessive interest in one subject. Scooter isn’t obsessed (yet, but he just turned 5) with one particular subject like bugs or trains so I kept answering no. It turns out though that his obsession with movies and movie characters is enough. I wrote it off as normal little boy behavior and since he will move from one movie to another I didn’t think it qualified. I was wrong. He has an immensely detailed memory and obsession for those characters and movies. His focus will probably shift to other areas of interest as he starts school and his horizons are broadened, but I am told to expect him to latch on to one or two topics at a time over the years and we may have a hard time getting him to move on to the next unit in school as he obsesses over something that caught his attention.
As for the repetitive movements, Scooter occasionally has a rocking motion in his mid section that isn’t too noticeable because you often think he’s just antsy or has to go to the bathroom. Had we not had our diagnosis now, a teacher may have told us eventually that it was a sign of ADD (often an early misdiagnosis for these kids) since he would have trouble sitting still for long periods. Also, the way he focuses on parts of toys instead of the whole, for example: constantly switching his transformers back and forth or adding and removing limbs and accessories; also falls into that repetitive movement category. Although he does do a lot of pretend play with these toys and characters (very creative), it’s secondary to his need to play with the parts and maneuver them. This is why I am not the expert and just the parent and why all those online and book questionnaires are intentionally so vague. The behaviors require a professional to observe them as part of a big picture.
I had called my friend, L, after the meeting and asked her how seriously to take the evaluation. Yes, I know there was a Psychologist there and everything, but how real is this? She asked me if I wanted the supportive friend answer or the professional one. Professional, seriously. She told me that educational evaluations were designed to be on the conservative side and we weren’t likely to go somewhere else and find out he was perfect. After talking to my doctor, I have decided to hold off on a more detailed medical evaluation (Children's has an amazing program) for a few months to see how everything develops. There are certain things that can't be seen with Scooter in regards to Asperger's until he is just a little older.
When the written report came in the mail, it was even harder to take. The numbers were right in front of us. The numbers on all the scales that showed how many obstacles my son has to overcome. When Scott read it he thought they had used what I said ‘against’ Scooter, like it was some kind of battle. I get what he’s feeling, the denial. I explained to him that the questions were to help them see all the sides of Scooter that they can’t observe there in their offices. Was anything I said wrong? Well, no. Okay.
Acceptance is slow. Understanding is slower. Results of a new study were just released in the last week that show Autism to possibly affect as many as 1 in 38 children. 1 in 38! Kids fall all over the place on the spectrum and most are not even identified. Even though the spectrum is currently separated into 3 areas: Aspergers, PDD-NOS (developmental delay non-specified, the most minor) and Autism; that outlook is changing. Soon we will see more detailed evaluations and a more generalized spectrum. I look at books and sometimes can’t tell where Scooter falls, but generally because of his IQ and verbal skills most people will lump him with Aspergers. However he’s extremely creative which would move him over to High Functioning Autism easily. It’s all very subjective and some of the more telling factors won’t be evident for another year or two as he matures. For Aspergers, this is really an early diagnosis. Most kids don’t get identified until they are 6-8 years old as the quirkiness becomes a problem once the kids are in school. Autism is many times identified by 3 years old, but not always.
ABC’s and 123’s. Numbers on scales, some very alarming. Letters, lots of letters. I have now added AU for Autism Spectrum, PDD-NOS, ASD for Aspergers Disorder, ARD and IEP and PPCD for school related therapies and evaluations and plans for meeting goals. There’s SPT for speech therapy and I am grateful that so far we don’t have to deal with Behavioral Therapies or Physical Therapies. The list keeps growing and growing.
We are now currently awaiting our ARD meeting. I can’t even remember what that stands for, but I do remember the words don’t tell you anything. It’s a meeting at the school Scooter will attend with his new principal, the PPCD teacher, his new kindergarten teacher, at least one of the people who did his evaluation and Scott and I. We will meet to discuss his eval and set expectations and goals for next year and make a plan. This will help them come up with his IEP, Individualized Education Plan, which will be a very detailed explanation of that plan and how it will be implemented as well as dates for goals to be met. I have already met the PPCD teacher and hinted heavily that we will be pushing for Scooter to be mainstreamed for all academic parts of the day. She got a great example of how he doesn't interact, but lets Riley communicate for him while we were there.
Scooter will probably excel well in direct instructional settings. He is going to struggle in areas that are more free form (like so much of kindergarten is) and require a lot of social interaction. There is a possibility of a retention year which would put him in the class only 1 year before Riley instead of 2, but we won’t worry about that until next year. Regardless, once he moves on to 1st grade it is very unlikely for him to be held back again since it is socially that he is behind and direct teacher instruction will increase each year while free time slowly falls by the way side. I was surprised to hear about speech therapy for him since he talks so well, but it’s more about the pragmatics for him and will involve a lot of visual story boards to help him with transitions, schedules and social behaviors. His OT is already working on his weak fine motor skills and I expect that to be a lot better when he starts school than when we were evaluated, but they will work on that as well.
Since we were already starting OT, there isn’t a whole lot more I can do for Scooter right now as far as therapies go. However, with OT I have been given a lot of ideas for play at home that can help Scooter as well. The psychologist suggested that I expose him to as many different social situations as I can over the summer, whether or not he participates is not the issue. Oh, yeah. Well, truthfully I know I have avoided a lot of stuff because of how Scooter doesn’t handle things well. And I know I have to stop that because Riley DOES want to participate and should be allowed to. I found a small swim school that will accommodate our particular situation for lessons this summer and I am thinking about a Gymboree art class, but WOW they cost a lot. I am currently accepting as many invitations as possible and have asked my MOPS group to invite us to every play date they can over the summer months. They have been super supportive.
I have spent a lot of time this last month looking back over Scooter’s 5 short years and thinking about all the little signs I might have missed along the way. For instance, he was my only child to have a bad reaction to a vaccine – once upon a time. It wasn’t major and it was within the realm of normal on all those info sheets they give you. I never believed in the link between vaccines and autism (although it’s looking now like some of the data we have relied on for this info is skewed), but none of my children has ever had a vaccine with thermisol in it anyway. However, one of my blogs posted info about a study last month that publicized how vaccines are grown in human tissue, human DNA. That scared the bejeezus out of me and not just because of Autism. What kind of latent diseases and problems are lurking in some strangers DNA that we can’t see and then we are injecting them into our young children’s bodies?
I can’t remember a time that Scooter wasn’t loving and affectionate to us or that he was disconnected from us, but I do know there was a difference in how he expressed himself. I watch him interact with his brothers, cousins and neighbors and on the surface it all looks very normal. It’s just that now that I KNOW, I can see where it isn’t exactly perfectly normal. The differences and quirks are there and will probably become more evident in time. He plays with kids, but the cooperative play is greatly reliant upon Scooter calling the shots and maneuvering others. He does not cope well when he is out of control. He has a severe lack of empathy for others and doesn’t understand why their feelings are hurt by his behaviors even while his are hurt by them doing the same things to him.
The most obvious of behaviors is how he doesn’t greet or interact others in different situations. Even arriving at his grandparents house where he is super comfortable and happy involves a disconnect in behavior. He will walk in with his head down, avoiding all eye contact and greetings. He doesn’t respond to people and their questions. Then after a few moments he will begin talking to his Grandma or Grandpa like they are in the middle of a conversation that was interrupted. It was explained to me that this is because these children either don’t have or don’t recognize their inner voice. Therefore they don’t realize that there is a separation between what is going on in their heads versus your head. A greeting isn’t necessary and you must certainly know what I am talking about because ‘we’ were just thinking about it in the car and when I walked in the door. This is also key in understanding the behavior melt downs for the processes that we were supposed to innately know how our child WANTED them to go without him ever telling us.
All of my family has known since Scooter was just a baby to give him his time to warm up. You could never just walk in and grab him. He isn’t ready to be kissed and hugged when you see him for the first time in either a day or a month or more. We always just called him our ‘warm up kid’ and thought he was just painfully shy. Even at home, he doesn’t want to be embraced and kissed first thing in the morning, he has to be ready. He will often tell me his kisses are ‘in his pocket’ and he will get them out later. I can hug and kiss him and he will 'receive', but not initiate kisses or hugs until way later in the day and some days not at all. Now I am starting to see how this is just a different level of a characteristic on the AU spectrum.
Another one of these quirks is his social interaction with other kids. The longer he is around a child or group of children the easier time he has of playing, but it’s always better if it’s more of a small group or individual situation. He also uses Riley as a social crutch whenever he can. If Riley is around he will adjust more easily and more quickly than when he is on his own. At preschool he was every teacher’s favorite child because he was the one that stayed by their side or became their helper. He had a couple of friends, but most of the time when I picked him up I would find him playing alone quietly or sitting with the teacher while Riley would be playing who knows what with any or every kid in his room. Last summer on our Wisconsin vacation, Scooter spent most of his time in various strangers homes exploring their toy areas with his brother rather than interacting with the new children around him.
It makes more sense now, why soccer was so hard for him. He wanted to play so badly, but he didn’t interact directly with the other kids. He talked about them when we were at home, but wouldn’t talk to them when we were there. It also explains a lot about why he never adjusted well to a Sunday School toddler or preschool class as the dynamics of teachers and children present are always changing. There isn’t enough consistency for Scooter to get comfortable and adjust.
He’s normal, he is just different or delightfully quirky. I have more patience now that I know, even though having the truth thrust on me was painful and hard to swallow. I see how he just needs something different from me at times than the other two do. When I am in difficult situations for him now, I can say things like ‘Scooter has a hard time transitioning’ or ‘Scooter needs a little help in new social situations’ and that is usually enough.
At first I was bogged down by fears for his future and sadness that he wasn’t ‘perfect’ as we would all like to see our children and grandchildren. I am beginning to find my way out of the murk and once again rejoice in what Scooter IS, not what he ISN’T. Now I try to focus on what the advantages are for him to have some special small group help at school and what I would like our goals to be for them to help my child. I look to the future and see a world of opportunity for a child who is so intelligent and enormously creative and detail oriented. I don’t worry about whether or not he’ll marry, but think of how singularly dedicated to his wife and family he will be because of how loyal and loving he is to those closest to him. I’m trying not to see the limitations, but the possibilities.
I am so grateful for my friends and family for being so supportive. I am grateful that they all just see Scooter as Scooter and not something less than wonderful. I am so happy that he is surrounded by love and acceptance. A friend of mine who teaches special-ed in WI told me she has 7 Kindergarteners with Aspergers this year and most of the parents are so devastated by the diagnosis they have a hard time adjusting. She told me on that very first day how awesome I was doing already because I already had so much knowledge and understanding. I didn’t feel like she was right that night, but it helped anyway.
Scott is finding his way to acceptance too, but I think it’s harder for him in many ways. I’ve noticed more patience in him lately too though. More patience and now an effort to gently help Scooter work on things like eye contact and empathy. At the very least, he’s gone at work all day and doesn’t see all the little things that I do. Most of Scooter’s breakdowns happen in the mid-afternoon when he is cranky and should probably be taking the nap that he gave up long ago. I often think that if I had not been home with my kids this year, I would have missed a lot of this stuff as well. Scooter might have had a miserable start to school with problems we weren’t prepared for and now we can go armed into battle. God is amazing! He lays the path for us whether we understand what He is doing or not.
I took the boys to a birthday party at a park yesterday and a stranger would never be able to tell there was anything different about my child. He had a few moments of shy before he was ready to chase his little brother down and follow him on the playground and then order him around for the rest of the day. Only I noticed that although Riley spoke to other children and interacted with them, Scooter only spoke with Riley or me. Scooter would not sit with the other children at the cake table without me standing there and then only for a moment before he moved to a table by himself, but there were a lot of kids coming and going so it wasn't very noticeable. Only my dear friends hosting the party understood what a HUGE deal it was for him to say Thank You to one of them when we were leaving and Happy Birthday to their son just before we walked away, even if it was very quietly and with eyes averted.
My life is alphabet soup. My kid is delightfully quirky and unique. My journey is just beginning. Telling you all about this is part of my process to accept and move on. Hopefully soon I will be able to say the words out loud that I fought again just this weekend surrounded by loved ones. I’ll keep reading and learning and teaching my child and I will rejoice with you his accomplishments and cry with you when he falls. Mostly though I am going to try and focus on how completely wonderful and fantastic Scooter really is.
Thanks and God Bless!
My kid is delightfully quirky and unique.
I really appreciate all of your supportive comments from Friday’s post. This process has been overwhelming some days and frustrating others. The SI issues were concerning to us in a big way, but I probably would have shared them with you all sooner if we hadn’t run into another huge diagnosis like it was a brick wall last month. That one has taken some time to begin processing and accepting. Even though SI is challenging it gave me a lot of hope to have a plan and a course of action. I freely admit that I am not anywhere near that point with our newest batch of alphabet soup.
In my search for services for Scooter I was encouraged to contact the school district PPCD (Pre-School Program for Children with Disabilities) Department to see what would be available for him. At that time I thought that our OT was going to cost more than our mortgage each month and I was searching for other avenues to supplement his treatments that would alleviate the pressure financially. It took a while to find the right person to talk to in the right department, but in early March I finally got the right office.
I explained Scooter and his SI issues and my concerns for how he was going to handle something like lunch or gym during the day and also queried about possible OT at school to supplement treatments. They asked a lot of questions and then they explained to me that as therapists and psychologists they were very aware of SI and its effects on kids in the classroom. They also explained that the state of Texas does not recognize SI as an official disability except for when it falls under the autism spectrum.
This wasn’t really surprising to me. That’s how the medical community sees the whole matter as well. They recognize that it’s a real thing, but they don’t recognize it as its OWN condition yet. SI can be a part or portion of many other developmental disorders and that is usually how it is treated or at least billed for. It makes finding and getting treatments very difficult in certain situations.
They wanted to evaluate Scooter, but they could only do it under specified codes for the state and so they had to do the evaluation as an Autism Spectrum evaluation. They further explained that I shouldn’t worry about that as if he didn’t fall on the spectrum but had obvious sensory issues that would inhibit him in the classroom they could either recommend services based on their severity or at the very least notify the principal at his incoming school of a potential problem to watch out for so that little signs were not ignored. I liked that idea a lot. I wanted them to be aware of a potential mine field so they could be prepared.
Between the two OT clinics and my internet mining operation, I have now filled out 4 or 5 full sensory integration questionnaires about my child. They are very lengthy and detailed. There are over 20 pages of questions related to particular activities and senses and how often your child may or may not exhibit behaviors. There are detailed questions regarding every single stage of your child’s development from infancy to present. There is a lot of focus on the actual birth experience you had with these children and events in their first few weeks and months. When I was told that I would be receiving paperwork and a questionnaire from the PPCD department prior to my appointment, I wasn’t alarmed. It came in the mail just 3 days later and because my evaluation appointment was over a month away, I set it aside for a while.
I did my best to coordinate the PPCD evaluation with the one for our new clinic. Technically if the district identifies a child with a need for services they are obligated to provide them immediately, despite having a month long window to get on the school administrator’s calendar. I kind of felt like there might be an opportunity for him to get some OT during the last month of school and maybe I could eliminate a session or two from my paid-for schedule. They were both set for early April and a couple of weeks beforehand I pulled out the PPCD paperwork to fill out.
The symptom questionnaire was different from the SI profile since it was an Autism and Aspergers symptom profile. As I began, I thought that I would really only see positive and frequent behaviors in the sensory areas. Therefore, I was a little concerned when I realized that wasn’t the case and Scooter had quite a few behaviors that were telling in quite a few different areas. They asked a lot of the same questions on other forms regarding his development and birth, but there were other, slightly different, questions that made the hairs on my arms stand up.
There is a belief with SI that something happens to kids during their development time as babies to make them more sensitive. Somewhere along the line there is a misfire of neurons or a non-fire of neurons that keeps these kids from learning how to process sensory input properly and therefore with therapy the neurons can be trained into firing, so to speak. Early and frequent therapy can help build the pathways. It works better for some than others but the earlier you catch it and treat a child, the more neurons can be brought back to life. That’s a pretty rough interpretation of the data, but hopefully you get what I am saying. So therapists want to make sure there wasn’t anything hugely unusual or alarming with a birth, but they are more concerned with what happens during the first year. For us, Scooter crawled late and then not very long. He was quick to get to his feet and that probably was one of the signs of his tactile defensiveness beginning or even possibly a cause since crawling requires a lot of touching different surfaces in different situations. By itself, this isn’t a big deal, but combined with other factors it can be an indicator.
The AU questions were more focused around the birth and the first few weeks and then later development, like when he learned to recognize letters, etc. Both questionnaires touched on all the same areas and the differences were subtle, but having done so many already I could tell what was different right away. When I started filling in information about the bump on Scooters head when he was born that took 6 weeks to fully disappear and details regarding his severe choking issues as a newborn, I remembered that one of the therapists at the first clinic we had visited had been very concerned about those as well, while the owner and PT that were evaluating for sensory issues had not been concerned at all.
It was like working a huge jigsaw puzzle with 1000 pieces, but you don’t have the picture on the box to work from, to see where you are going and what you are going to end up with. I mean, I shouldn’t be worried, right? My kid is obviously not Autistic. That is what I was saying – to others and to myself. There is no way. Scooter is extremely affectionate and loving. He gives us eye contact, even if he doesn't for others. He talks like an adult half the time and he’s so smart. Right! Not my kid. And really, for our generation, it’s understandable. Our first images of what Autism looked like came in the form of Dustin Hoffman and Rain Man: Genius and completely detached, must be institutionalized to be happy. Granted, we’ve seen a lot more over the years to know that this is extreme, but it’s kind of hard to get that image out of our minds.
Still, I was a little worried so I did what I always do when I am worried, I read. I found some more checklists to tell me whether or not my child might possibly fall on a spectrum or not, they just were not as detailed as everything is so subjective in this area. Because he is so articulate I was consistently led to information about Aspergers. Everything I found pointed to the possibility that my son might fall on the borderline of this particular disorder. And I was calmed because I didn’t think it was an obvious problem. He was always one question shy of ‘You should have him evaluated’. I found out eventually that I was answering two of these questions incorrectly.
Ahhh, denial. Isn’t it wonderful? The thing is, we had lots of issues that we had chalked up to falling within either very stubborn or shy child or now within SI, not wanting to see that the SI might be part of a bigger picture. Before Scooter had his PPCD evaluation, I had prepared myself for the fact that he just might fall on the lowest (or technically highest, but that gets confusing for the regular person like me so we will keep it on the obvious) end of the spectrum, borderline. That’s what I thought, borderline. Like maybe he would qualify just enough for services and help, but he wouldn’t really have any real problems in life from it.
We were there for almost three hours and they gave Scooter plenty of time to warm up and be ready to play while they plied me with about 600 questions and asked for as much detail as I could give them. I got to talk about Scooters meltdowns that are definitely not in the area of ‘spoiled child normal temper tantrum’; when our whole life comes to a grinding halt for 45 minutes because there was some process we didn’t fulfill that only existed inside his head. I had the pleasure of explaining in excruciating detail the enormously pain filled social experiences we have had in situations like soccer or birthday parties or swim lessons. How Scooter wants to participate, but can’t. It was just downright thrilling to recount how hard transitions are for Scooter and how long he takes to warm up to people and situations. (Sorry for the sarcasm, but it was tedious.)
While my son lay in the floor fifteen feet away transforming a small Transformer backwards and forwards over and over again, they observed him gently while they focused on me. I knew they had already tested some of his basic knowledge and interaction skills when we first came in the door by disguising it in the form of play and excitement. They had tried to give him another transformer to play with as well, but he waited about 30 minutes before he reached out to touch it. Eventually they called him over and with some severe prompting he showed the ladies how to transform their Optimus Prime, but he wouldn’t make eye contact.
The evaluation involved Scooter participating with them, or in our case not participating, and then they observed the two of us playing together for a while. We drew and colored and played Go Fish. They gave me another form to fill out, more questions. This one was clearly labeled as an Aspergers profile. The three women evaluators went behind closed doors for a while and then came out to talk to me while Scooter played with some more toys.
I had prepared myself for this borderline, ‘maybe’, diagnosis so I had come alone. I wish I hadn’t. I wish Scott had been sitting there with me answering questions and then hearing what they had to say. It was so much harder later trying to recount it. Hearing it was hard, telling it is harder. The women were gentle and kind, but when they told me that my son fell on the high end of the mild to moderate range of the Autism spectrum and that it will probably look like Aspergers to us eventually, it felt like someone had punched me in the stomach. They stressed how intelligent Scooter is and how high his verbal and vocabulary skills were (like a 2nd grader, and he was being quiet and shy). They started talking about mainstream kindergarten coupled with PPCD services and all of it started blurring together for me. I really tried not to cry, but I know that I was not entirely successful.
Autism Spectrum Disorder. I still have a hard time saying it out loud. I am likely to say things like ‘It looks like Scooter might fall on the Autism spectrum’ or ‘It’s possible that he has Aspergers’ rather than ‘Scooter has Autism’. I spent a lot of those first nights watching him fall asleep and praying to ask for things like a ‘normal’ life or the opportunity of a career and a family if that’s what he wants. I had days that I cried and worried and others that went so well I wondered if they were all wrong about Scooter. I have moments when I want to believe the brief, misguided comments of well meaning people who think he will someday outgrow these behaviors.
For the record, the two questions I was unknowingly answering incorrectly on those profiles were about repetitive random movement and obsessive interest in one subject. Scooter isn’t obsessed (yet, but he just turned 5) with one particular subject like bugs or trains so I kept answering no. It turns out though that his obsession with movies and movie characters is enough. I wrote it off as normal little boy behavior and since he will move from one movie to another I didn’t think it qualified. I was wrong. He has an immensely detailed memory and obsession for those characters and movies. His focus will probably shift to other areas of interest as he starts school and his horizons are broadened, but I am told to expect him to latch on to one or two topics at a time over the years and we may have a hard time getting him to move on to the next unit in school as he obsesses over something that caught his attention.
As for the repetitive movements, Scooter occasionally has a rocking motion in his mid section that isn’t too noticeable because you often think he’s just antsy or has to go to the bathroom. Had we not had our diagnosis now, a teacher may have told us eventually that it was a sign of ADD (often an early misdiagnosis for these kids) since he would have trouble sitting still for long periods. Also, the way he focuses on parts of toys instead of the whole, for example: constantly switching his transformers back and forth or adding and removing limbs and accessories; also falls into that repetitive movement category. Although he does do a lot of pretend play with these toys and characters (very creative), it’s secondary to his need to play with the parts and maneuver them. This is why I am not the expert and just the parent and why all those online and book questionnaires are intentionally so vague. The behaviors require a professional to observe them as part of a big picture.
I had called my friend, L, after the meeting and asked her how seriously to take the evaluation. Yes, I know there was a Psychologist there and everything, but how real is this? She asked me if I wanted the supportive friend answer or the professional one. Professional, seriously. She told me that educational evaluations were designed to be on the conservative side and we weren’t likely to go somewhere else and find out he was perfect. After talking to my doctor, I have decided to hold off on a more detailed medical evaluation (Children's has an amazing program) for a few months to see how everything develops. There are certain things that can't be seen with Scooter in regards to Asperger's until he is just a little older.
When the written report came in the mail, it was even harder to take. The numbers were right in front of us. The numbers on all the scales that showed how many obstacles my son has to overcome. When Scott read it he thought they had used what I said ‘against’ Scooter, like it was some kind of battle. I get what he’s feeling, the denial. I explained to him that the questions were to help them see all the sides of Scooter that they can’t observe there in their offices. Was anything I said wrong? Well, no. Okay.
Acceptance is slow. Understanding is slower. Results of a new study were just released in the last week that show Autism to possibly affect as many as 1 in 38 children. 1 in 38! Kids fall all over the place on the spectrum and most are not even identified. Even though the spectrum is currently separated into 3 areas: Aspergers, PDD-NOS (developmental delay non-specified, the most minor) and Autism; that outlook is changing. Soon we will see more detailed evaluations and a more generalized spectrum. I look at books and sometimes can’t tell where Scooter falls, but generally because of his IQ and verbal skills most people will lump him with Aspergers. However he’s extremely creative which would move him over to High Functioning Autism easily. It’s all very subjective and some of the more telling factors won’t be evident for another year or two as he matures. For Aspergers, this is really an early diagnosis. Most kids don’t get identified until they are 6-8 years old as the quirkiness becomes a problem once the kids are in school. Autism is many times identified by 3 years old, but not always.
ABC’s and 123’s. Numbers on scales, some very alarming. Letters, lots of letters. I have now added AU for Autism Spectrum, PDD-NOS, ASD for Aspergers Disorder, ARD and IEP and PPCD for school related therapies and evaluations and plans for meeting goals. There’s SPT for speech therapy and I am grateful that so far we don’t have to deal with Behavioral Therapies or Physical Therapies. The list keeps growing and growing.
We are now currently awaiting our ARD meeting. I can’t even remember what that stands for, but I do remember the words don’t tell you anything. It’s a meeting at the school Scooter will attend with his new principal, the PPCD teacher, his new kindergarten teacher, at least one of the people who did his evaluation and Scott and I. We will meet to discuss his eval and set expectations and goals for next year and make a plan. This will help them come up with his IEP, Individualized Education Plan, which will be a very detailed explanation of that plan and how it will be implemented as well as dates for goals to be met. I have already met the PPCD teacher and hinted heavily that we will be pushing for Scooter to be mainstreamed for all academic parts of the day. She got a great example of how he doesn't interact, but lets Riley communicate for him while we were there.
Scooter will probably excel well in direct instructional settings. He is going to struggle in areas that are more free form (like so much of kindergarten is) and require a lot of social interaction. There is a possibility of a retention year which would put him in the class only 1 year before Riley instead of 2, but we won’t worry about that until next year. Regardless, once he moves on to 1st grade it is very unlikely for him to be held back again since it is socially that he is behind and direct teacher instruction will increase each year while free time slowly falls by the way side. I was surprised to hear about speech therapy for him since he talks so well, but it’s more about the pragmatics for him and will involve a lot of visual story boards to help him with transitions, schedules and social behaviors. His OT is already working on his weak fine motor skills and I expect that to be a lot better when he starts school than when we were evaluated, but they will work on that as well.
Since we were already starting OT, there isn’t a whole lot more I can do for Scooter right now as far as therapies go. However, with OT I have been given a lot of ideas for play at home that can help Scooter as well. The psychologist suggested that I expose him to as many different social situations as I can over the summer, whether or not he participates is not the issue. Oh, yeah. Well, truthfully I know I have avoided a lot of stuff because of how Scooter doesn’t handle things well. And I know I have to stop that because Riley DOES want to participate and should be allowed to. I found a small swim school that will accommodate our particular situation for lessons this summer and I am thinking about a Gymboree art class, but WOW they cost a lot. I am currently accepting as many invitations as possible and have asked my MOPS group to invite us to every play date they can over the summer months. They have been super supportive.
I have spent a lot of time this last month looking back over Scooter’s 5 short years and thinking about all the little signs I might have missed along the way. For instance, he was my only child to have a bad reaction to a vaccine – once upon a time. It wasn’t major and it was within the realm of normal on all those info sheets they give you. I never believed in the link between vaccines and autism (although it’s looking now like some of the data we have relied on for this info is skewed), but none of my children has ever had a vaccine with thermisol in it anyway. However, one of my blogs posted info about a study last month that publicized how vaccines are grown in human tissue, human DNA. That scared the bejeezus out of me and not just because of Autism. What kind of latent diseases and problems are lurking in some strangers DNA that we can’t see and then we are injecting them into our young children’s bodies?
I can’t remember a time that Scooter wasn’t loving and affectionate to us or that he was disconnected from us, but I do know there was a difference in how he expressed himself. I watch him interact with his brothers, cousins and neighbors and on the surface it all looks very normal. It’s just that now that I KNOW, I can see where it isn’t exactly perfectly normal. The differences and quirks are there and will probably become more evident in time. He plays with kids, but the cooperative play is greatly reliant upon Scooter calling the shots and maneuvering others. He does not cope well when he is out of control. He has a severe lack of empathy for others and doesn’t understand why their feelings are hurt by his behaviors even while his are hurt by them doing the same things to him.
The most obvious of behaviors is how he doesn’t greet or interact others in different situations. Even arriving at his grandparents house where he is super comfortable and happy involves a disconnect in behavior. He will walk in with his head down, avoiding all eye contact and greetings. He doesn’t respond to people and their questions. Then after a few moments he will begin talking to his Grandma or Grandpa like they are in the middle of a conversation that was interrupted. It was explained to me that this is because these children either don’t have or don’t recognize their inner voice. Therefore they don’t realize that there is a separation between what is going on in their heads versus your head. A greeting isn’t necessary and you must certainly know what I am talking about because ‘we’ were just thinking about it in the car and when I walked in the door. This is also key in understanding the behavior melt downs for the processes that we were supposed to innately know how our child WANTED them to go without him ever telling us.
All of my family has known since Scooter was just a baby to give him his time to warm up. You could never just walk in and grab him. He isn’t ready to be kissed and hugged when you see him for the first time in either a day or a month or more. We always just called him our ‘warm up kid’ and thought he was just painfully shy. Even at home, he doesn’t want to be embraced and kissed first thing in the morning, he has to be ready. He will often tell me his kisses are ‘in his pocket’ and he will get them out later. I can hug and kiss him and he will 'receive', but not initiate kisses or hugs until way later in the day and some days not at all. Now I am starting to see how this is just a different level of a characteristic on the AU spectrum.
Another one of these quirks is his social interaction with other kids. The longer he is around a child or group of children the easier time he has of playing, but it’s always better if it’s more of a small group or individual situation. He also uses Riley as a social crutch whenever he can. If Riley is around he will adjust more easily and more quickly than when he is on his own. At preschool he was every teacher’s favorite child because he was the one that stayed by their side or became their helper. He had a couple of friends, but most of the time when I picked him up I would find him playing alone quietly or sitting with the teacher while Riley would be playing who knows what with any or every kid in his room. Last summer on our Wisconsin vacation, Scooter spent most of his time in various strangers homes exploring their toy areas with his brother rather than interacting with the new children around him.
It makes more sense now, why soccer was so hard for him. He wanted to play so badly, but he didn’t interact directly with the other kids. He talked about them when we were at home, but wouldn’t talk to them when we were there. It also explains a lot about why he never adjusted well to a Sunday School toddler or preschool class as the dynamics of teachers and children present are always changing. There isn’t enough consistency for Scooter to get comfortable and adjust.
He’s normal, he is just different or delightfully quirky. I have more patience now that I know, even though having the truth thrust on me was painful and hard to swallow. I see how he just needs something different from me at times than the other two do. When I am in difficult situations for him now, I can say things like ‘Scooter has a hard time transitioning’ or ‘Scooter needs a little help in new social situations’ and that is usually enough.
At first I was bogged down by fears for his future and sadness that he wasn’t ‘perfect’ as we would all like to see our children and grandchildren. I am beginning to find my way out of the murk and once again rejoice in what Scooter IS, not what he ISN’T. Now I try to focus on what the advantages are for him to have some special small group help at school and what I would like our goals to be for them to help my child. I look to the future and see a world of opportunity for a child who is so intelligent and enormously creative and detail oriented. I don’t worry about whether or not he’ll marry, but think of how singularly dedicated to his wife and family he will be because of how loyal and loving he is to those closest to him. I’m trying not to see the limitations, but the possibilities.
I am so grateful for my friends and family for being so supportive. I am grateful that they all just see Scooter as Scooter and not something less than wonderful. I am so happy that he is surrounded by love and acceptance. A friend of mine who teaches special-ed in WI told me she has 7 Kindergarteners with Aspergers this year and most of the parents are so devastated by the diagnosis they have a hard time adjusting. She told me on that very first day how awesome I was doing already because I already had so much knowledge and understanding. I didn’t feel like she was right that night, but it helped anyway.
Scott is finding his way to acceptance too, but I think it’s harder for him in many ways. I’ve noticed more patience in him lately too though. More patience and now an effort to gently help Scooter work on things like eye contact and empathy. At the very least, he’s gone at work all day and doesn’t see all the little things that I do. Most of Scooter’s breakdowns happen in the mid-afternoon when he is cranky and should probably be taking the nap that he gave up long ago. I often think that if I had not been home with my kids this year, I would have missed a lot of this stuff as well. Scooter might have had a miserable start to school with problems we weren’t prepared for and now we can go armed into battle. God is amazing! He lays the path for us whether we understand what He is doing or not.
I took the boys to a birthday party at a park yesterday and a stranger would never be able to tell there was anything different about my child. He had a few moments of shy before he was ready to chase his little brother down and follow him on the playground and then order him around for the rest of the day. Only I noticed that although Riley spoke to other children and interacted with them, Scooter only spoke with Riley or me. Scooter would not sit with the other children at the cake table without me standing there and then only for a moment before he moved to a table by himself, but there were a lot of kids coming and going so it wasn't very noticeable. Only my dear friends hosting the party understood what a HUGE deal it was for him to say Thank You to one of them when we were leaving and Happy Birthday to their son just before we walked away, even if it was very quietly and with eyes averted.
My life is alphabet soup. My kid is delightfully quirky and unique. My journey is just beginning. Telling you all about this is part of my process to accept and move on. Hopefully soon I will be able to say the words out loud that I fought again just this weekend surrounded by loved ones. I’ll keep reading and learning and teaching my child and I will rejoice with you his accomplishments and cry with you when he falls. Mostly though I am going to try and focus on how completely wonderful and fantastic Scooter really is.
Thanks and God Bless!
Friday, May 13, 2011
A,B,C’s and 1,2,3’s: Our Journey of Discovery, Phase 1
Alphabet soup. Some days now I feel like that is what my life is evolving into and becoming. It’s overwhelming at times and barely noticeable at others, but it’s always there. There are portions of my life that have quickly devolved into an array of acronyms. In some ways this journey has been one we’ve been inching along for years and in other ways it is just beginning and feels like I have been on a high speed train for the last 4 months.
We have struggled with Scooter’s diet since he was only 18 months old. It’s easy to forget, but there was a time that he ate everything we put in front of him. And then he didn’t. It wasn’t too alarming at first. All toddlers go through phases with their food. They eat nothing but bananas for two weeks and then don’t want to touch a banana for a month or two. Those things are normal. So, when Scooter first began dropping favorite foods from his normal repertoire and was more and more hesitant to try something new we weren’t very worried. Weeks stretched into months and months stretched into years. I asked the doctor about it at every single appointment and was always told the same tired stories about kids who ate nothing but beans for 6 months or white foods for a year. He’ll grow out of it. It’s a phase.
At what point is it not a phase anymore? He was growing. He was getting all nutritional needs met. He just wouldn’t eat what wasn’t in his particular diet plan. As a mother, this was frustrating to me on many levels. I worried he wasn’t getting enough of what he needed. I knew that I wasn’t supposed to cater to him or become a short order cook for him, but I also needed him to eat something and I began to cave. I had days that I could laugh it off and say to myself ‘he isn’t going to college eating this way’ and there were others that I wanted to get a huge funnel and prop it in his mouth so that I could pour food down his throat. Going to a restaurant was definitely cheaper than it would’ve been, but we have started to avoid some of our favorite places because there is absolutely nothing there that our child would eat. It was sometimes embarrassing to be a guest somewhere that Scooter wouldn’t eat anything offered to him and I was digging out fruit bars and peanut butter crackers to feed him. It was often humiliating to be with family that didn’t understand and looked at us like we were the worst parents because we couldn’t even talk our child into trying one bite.
All kids are picky eaters in some area. Mine was just picky in almost every area. Helpful friends would give me tips on cramming extra veggies into sauces, but he doesn’t eat sauce. Family members would try to gently admonish me into making him try 2 bites of what we put in front of him, but they didn’t get that we had tried that stuff a million times. Reward systems, threats, hiding foods, making him remain at table until he tried something, making it a game or a contest, reading books together about nutrition and trying foods (I’ve read Green Eggs & Ham to him about 500 times in the hopes that it would click with my son) and me reading books and websites on stubborn kids, food chaining, kid friendly recipes, you name it. It’s hard for others to see what efforts you are putting in on your own time and in your own home, but believe me the effort was there.
When Scooter turned 4 last year and I realized we had hit the 2 ½ year mark with our eating challenges and I still wasn’t getting anywhere with him I began to feel despondent about the whole thing. Is it possible to let your kid eat this way as long as he wants and then eventually he will just start eating? That’s what my doctor was telling me and as much as I love him, I was getting pretty tired of that answer. I started looking for possible medical reasons for the behavior and read even more books. I thought maybe I could come up with a couple of things to suggest a test for, like thyroid or something. And in the meantime, I just kept plugging on. On the rare occasion that Scooter tried a new juice flavor or even a new type of chip we rewarded him with a marble in his bucket (when filled he gets to pick a ‘big’ toy from the store, but at this rate it could be 3 years). I insist on a healthy food option for him before a not-so-healthy one and I try to make most of his ‘snacks’ healthy in disguise. Even the juice he likes has veggies hidden in the mix.
White Rice, Flavored Kid Type Gogurt, PB Crackers (only store bought), shredded cheese, carrots on occasion, red grapes, apples, fruit bars, granola bars, dry cereal, milk, some juice, and crunchy bite size snacks. That’s it. (Of course chocolate and cookies and cake and popsicles and mint chocolate chip ice cream too, but for the healthy that’s it.) My child’s diet for the last 3 ½ years. No meat. No potatoes unless they are in French fry form (must not have any peel or seasoning) or on a rare occasion hash browns. No pasta. No bread. He likes Eggo Waffles and Pop Tarts, but I go long stretches without buying those so that he isn’t getting too many breakfasts coated in sugar.
Wouldn’t you feel frustrated and lost? I was. And there were other things going on too, but I didn’t link them until recently. I just thought they were quirky things about my kid. Except for one little thing which I had even asked my doctor about it in relation to Scooter’s diet on more than one occasion. He didn’t think anything of it though and it took a long time for everything to come together. What was that item? Smell. Scooter has a ridiculously sensitive sense of smell.
When Scooter was about 2 ½, I was making Tyler’s lunch one morning on the far end of my kitchen. Around the corner and a good 40 feet away, Scooter was laying on the couch under a blanket. He didn’t know what I was doing. He hadn’t seen me yet. I didn’t even know he was there until he started yelling at me to ‘Stop it!’ What? Stop that momma. I don’t like that smell. What smell? What are you talking about? The bread. I don’t like the smell of that bread! It was the first of many incidents like that, but he wasn’t always vocal about the problem. He would just occasionally complain about certain food smells. It was odd and quirky, but not alarming. I did ask my doctor if his sensitivity to smell could be keeping him from eating different foods, but he didn’t think so and I let it go.
In the back of my mind, I was thinking of my grandfather though. Grandpa Brawand had practically no sense of smell which limited his sense of taste. That man ate EVERYTHING and then some. It’s not that he couldn’t taste at all, he could and loved a good meal and even more a good dessert. But he was so easy going with food, good or bad, and I think that was because he couldn’t smell everything. You were taught in school, just like me, that smell and taste are linked. Maybe that was part of Scooters problem, right? Right. But what can you do about that?
In all of my reading, I kept coming across something; a possible disorder. I would read the short lists of symptoms and think that most of them didn’t really apply and the ones that did could be something or anything else. I would tell myself that I was reading my kid into this list, this disorder, because that was the book I was reading today. I would ponder and then discard. Because it sounded crazy, and subjective and ethereal. It didn’t sound like something REAL to me. And my kid didn’t have ALL the symptoms, he only had symptoms in some of the areas.
As we rounded the year out and started a new one and as Scooter’s 5th birthday approached my worries for how he was going to handle himself in Kindergarten got stronger. Scooter had gotten to a point that he could not stay in the room with us when I made certain foods for dinner. He would run and hide in my bedroom until we had cleared the table when I made things like Pork Loin or Ham. If the meal was beef mixed with strong spices he would insist on sitting on the other side of the living room while we ate. Most of the time, if chicken was for dinner he would join us at the table. If his brother was eating Mac n Cheese, he would insist that he stayed on the other side of the room from him. Heaven forbid Riley ate a piece of bread or a bagel and decided to carry it around the house. Scooter would yell ‘Don’t come by me! Stay away!’ In fact, if I touched bread for Riley, he would cry and beg me to wash my hands before I touched him or anything he wanted. I wasn’t worried about whether Scooter could learn to read and write. I was worried about how he would handle sitting in a lunch room with 100 kids eating PB&J sandwiches when he couldn’t stand the smell of even one piece of bread. What was going to happen? When he started to complain that he didn’t always like the smell of Riley or Scott, and insisted that Riley take another bath or shower I began to get agitated. Am I compensating too much? Is this for real? But, I knew it was.
I went to a movie in January with a friend who has a career in special education, deaf education and preschool child development. She deals with kids on many, many different levels all day every day. She has an adult son with Aspergers who is now a sharp shooter in the Marines. She’s seen a lot, but she has never tried to push anything on me with my kids. She just listens and sometimes guides me gently to good resources. She is the first to rejoice in some of my complaints about my kids for their wonderful, amazing normal-ness. I love her. After the movie we sat in her car talking and I told her all about my concerns, again. She had been hearing them for a couple of months. And then she said: Have you ever heard of something called Sensory Integration Disorder?
There it was. The ‘Disorder’. The one that I had been reading about for months and discarding, most likely because it came with the word ‘Disorder’ attached. And I admit to you now, that I had never pushed my research on it until then. I hadn’t done any research on the internet or found any books specifically about SI. (See, there’s the first Acronym, SI, Sensory Integration. That’s what they call kids like mine. I am grateful that they drop the ‘D’, let me tell you.) Reading would have been my first course of action normally, since I am an information junkie, but I didn’t really want to know so I just didn’t look.
I told L that yes I had, but I didn’t think it was Scooter because he didn’t have issues with movement, for example, or cover his ears for every loud noise out there, etc. L said that yes, that was true, but every kid with SI was different and sensitive in different areas. It wasn’t about whether or not he had every symptom, but if he had a whole lot of symptoms in a certain area and whether or not they were affecting him in his daily life. Oh. Hmmm.
I started mining for information and looked everywhere for data and lists and explanations and treatment options. My first concern was if my kid fit the profile or not. My second was what could be done if he did fit the profile. And finally, what do I do next? When I found very long and detailed lists of symptoms and questionnaires that I could fill out and see where we stood, it was obvious to me immediately that Scooter was going to fall in this spectrum in a big way. The smell sensitivities and picky eater problems were the most prevalent, but there were more.
Scooter does have some audio sensitivity, just not obviously so. He doesn’t run away when I turn on a vacuum cleaner or a hair dryer, but he has always been able to hear sounds from far away more than the rest of us. He went through a long period when he wouldn’t go to Home Depot with us, because the loud tools in the lumber department and tool rental area were too much for him and he left the room when dad & I used our power tools last summer. He spent 2 weeks last fall having trouble getting and staying asleep because of some noise in his room that no one else could hear. I finally found a small play phone in the back of his closet, buried under a whole pile of stuff that was emitting a very soft, almost non-existent, occasional squeak as the battery inside died. He also has some visual sensitivity, mostly regarding bright lights. Car rides during the summer months with him can be difficult as he begs me to turn the car and get the sun out of his eyes, even with dark sunglasses.
The rest of Scooter’s issues fall in what is called ‘tactile defensiveness’. It never occurred to me when he was little that his refusal to run barefoot in the grass was an issue. I didn’t consider that his extreme dislike of having his hands or feet dirty was a problem. We just thought it was super cute. I bought him his first pair of crocs when he wouldn’t walk on the sand at the beach or put his feet in a lake, river or ocean because of the sand and silt underneath the water. Only problem was, crocs have holes in them and sand can get inside. Scooter will gag often during his teeth being brushed and often can’t stand the feel of the bristles on the brush. Textures in foods are very prominent to him as well as their smell and taste. He can’t always get past smell and texture to even find out if he likes a taste. Sometimes he won't eat his rice because he says it 'smells too soft', I don't know exactly what that means to him, but it's enough to keep him from eating. It turns out that some of the reasons that he is initially so quiet and shy in new situations stems from being so overwhelmed by sensory input that he needs his dad or I to cling to and help filter through all the stimuli.
The good news in all of this is that there is a lot of help out there. Kids with SI respond extremely well to Occupational Therapy and a sensory diet (tailored to each child, a gentle expansion of their sensory world). There isn’t a cure, but they can be ‘de-sensitized’ a little while being taught how to process sensory input better. They can learn to cope, even if they are always sensitive. For instance, some of these kids may never learn to tolerate meat and will become vegetarians while learning to tolerate other sources of protein and others once their brain catches up with their bodies may grow out of it by adulthood with only mild sensory issues that resemble quirks. With a high frequency of treatment initially, they can be weaned and tapered off within 6 months in most cases. The problem is that you don’t just start with working on eating more foods because they aren’t going to try something they can’t touch or smell. It’s a process.
I make this sound pretty easy, jamming it into this very lengthy blog, but it’s really been challenging. Finding the right clinic, figuring out insurance and cost, scheduling and then actually getting my kid to participate have been some pretty large obstacles. It’s also a really long story so I’ll sum up! The first clinic I tried was highly recommended, 15 minutes from home, quite expensive and didn’t work with insurance at all. I knew I was going to be out of network on all this stuff anyway, but these people wanted everything out of pocket and then let you file yourself. All sessions were 1 hour, $160 per, and they wanted Scooter there for 2-3 sessions per week for the next 6 months, followed by another year of weekly and then bi-weekly treatments. We had a screening there, not a full evaluation (for which they wanted $750) and a couple of cranial-sacral treatments (pressure point kind of thing with head and neck) and then I put on the brakes.
Sometimes it’s good to be an information junkie. I knew from my research that frequency was more important than length for OT treatments, most evals in my area topped out at $300 max and any OT clinic should accept ANY eval, not insist on their own only, which this place was doing. My sister got on the phone all the way from Vegas and helped me do some more looking. (It turns out I live in a hot spot in the metroplex for pediatric occupational therapy. Who knew?) Anyway, I waited to start the treatments until I had all of my ducks in a row since frequency and consistency were the 2 biggest keys for helping kids with SI. We found a clinic that is literally in my subdivision! They do all the insurance filing and I just get to pay my copay now that the deductible has been met. They also will break sessions down into shorter periods than an hour when they need to, but since they always bill an hour to insurance, Scooter gets a full hour if he can tolerate it. Scooter had a full evaluation there for sensory integration by 2 occupational therapists and he now sees Miss Lauren twice a week.
I got two huge pieces of good news during our initial evaluation and they both revolved around the fact that Scooter loves Mint Chocolate Chip Ice Cream. First, mint is a very strong smell and flavor which means he can probably be taught to tolerate other strong flavors and smells eventually. Maybe not all of them, but definitely more than what we see today. He loves mint in general so the smell can also be used in different ways to help him tolerate smells he doesn’t like in situations where I want him to stay put and behave instead of running away or having a meltdown. Also, Mint Chocolate Chip Ice Cream is a mixed texture food. It’s the only one that Scooter will eat right now, but some kids with SI never develop the ability to tolerate mixed texture foods. Since Scooter can tolerate one, he has the capacity to someday tolerate more. I know it sounds crazy, but these were enormously helpful to my state of mind. After all, our life now sounds like this: SI – Sensory Integration Disorder, OS – Oratory Sensitivity, VS – Visual Sensitivity, TD – Tactile Defensiveness, OT – Occupational Therapy. And the list gets longer, but that’s later in our story. I am constantly reminding myself that I have the same Scooter today that I had yesterday and that I will tomorrow. Acronyms and labels are just tools to help him. Some days I have to remind myself more than once.
He just finished week four of therapy. One month down of what they estimate to be a 3-6 month time frame of working with him. It shouldn’t be twice a week for all of that. At some point, they will start tapering off as he meets his goals. We have already seen progress in some areas. Scooter really likes to ‘play’ with Miss Lauren and Riley hounds me the entire hour we wait because he got to play with Scooter the first time and thinks he should be in there too. Scooter tells him ‘Riley, I’m five now so I do this, you are not five.’
At the beginning of each session, Lauren ‘brushes’ Scooter. This is the weirdest and coolest thing and I totally don’t get why it works, but I love that it does. It’s a special soft surgical type brush. Scooter gets brushed in a downward motion on his arms, legs and back ten times each. This is followed by joint compressions on all of his limbs. The effects last about 2 hours and doing it is like flipping a switch on my son. He goes from being shy, disconnected and uncooperative to calm, responsive and ready to work. It’s crazy. I ordered some brushes for home and I now do this routine before bedtime or going somewhere he would normally have a hard time interacting or even prior to dinner if we are having foods with strong smells. I also do it when he starts to have a meltdown that I know is not related to anything other than him having a hard time dealing with everything around him.
Scooter also now has 2 ‘smell sticks’ which are kiddie-flavored-chapsticks. When I served pork loin a couple weeks ago, Scooter got his cherry smell stick and sat at table with us for our entire meal, smelling his stick and chatting away with us. That’s an accomplishment, a big one. They are working hard on his tolerance for textures & smells and building up his fine motor skills which are very weak it turns out and that is in part related to the tactile defensiveness. To him, it’s just play time where he gets a lot of attention, but it’s very structured and helpful. He actually went outside barefoot the other day to play in a pile of leaves. That isn’t something that is normal for him and I am grateful for all of these little tiny signs of progress.
Sensory Integration Disorder (Also referred to as Sensory Processing Disorder) is basically a developmental disorder that makes it hard for someone to process sensory input. They are either over or under sensitive in a range of senses. We all have some of these sensitivities, but these kids have what you and I deal with times a hundred or a thousand. When I first started mentioning it to people, I got a lot of very strange looks and sometimes rude comments. Lots of people think he can just grow out of it or I should stop accommodating him so much. I get it, it sounds crazy. But it is very real and Scooter needs a little help, so we are giving it to him.
At the end of the day, I don’t really care if everyone gets it or believes it or not. I am just doing what I need to for my munchkin to help him. And in trying to get him all the help I could, I discovered a lot more about my son that I wasn’t really prepared for. But, that’s the next blog – the next phase. More alphabet soup. More ABC’s and 123’s.
Scooter is an incredible kid. He’s so smart, creative and funny. I love him so much I can’t hardly hold it in! When I think about what he’s been dealing with all these years, and still thriving; all that overwhelming sensory overload and he is still a super loving, silly kid - I get all teary eyed. I used to think that the word ‘disorder’ was a bad thing, that it would mean something or someone was ‘less’, at least if it hit my family anyway. Scooter isn’t ‘less’, he’s so much MORE. He deals with smells and sounds and the way things feel that the rest of us barely notice in a much more pronounced and major way and he just keeps on moving, learning and playing. You gotta love that! I do. I am so proud of him and the work he is doing. More tomorrow on where this journey has led us and what our spring has been about. Scooter has a million more challenges ahead, but if anyone can handle them – he can and therefore I can.
God Bless You and Keep You
We have struggled with Scooter’s diet since he was only 18 months old. It’s easy to forget, but there was a time that he ate everything we put in front of him. And then he didn’t. It wasn’t too alarming at first. All toddlers go through phases with their food. They eat nothing but bananas for two weeks and then don’t want to touch a banana for a month or two. Those things are normal. So, when Scooter first began dropping favorite foods from his normal repertoire and was more and more hesitant to try something new we weren’t very worried. Weeks stretched into months and months stretched into years. I asked the doctor about it at every single appointment and was always told the same tired stories about kids who ate nothing but beans for 6 months or white foods for a year. He’ll grow out of it. It’s a phase.
At what point is it not a phase anymore? He was growing. He was getting all nutritional needs met. He just wouldn’t eat what wasn’t in his particular diet plan. As a mother, this was frustrating to me on many levels. I worried he wasn’t getting enough of what he needed. I knew that I wasn’t supposed to cater to him or become a short order cook for him, but I also needed him to eat something and I began to cave. I had days that I could laugh it off and say to myself ‘he isn’t going to college eating this way’ and there were others that I wanted to get a huge funnel and prop it in his mouth so that I could pour food down his throat. Going to a restaurant was definitely cheaper than it would’ve been, but we have started to avoid some of our favorite places because there is absolutely nothing there that our child would eat. It was sometimes embarrassing to be a guest somewhere that Scooter wouldn’t eat anything offered to him and I was digging out fruit bars and peanut butter crackers to feed him. It was often humiliating to be with family that didn’t understand and looked at us like we were the worst parents because we couldn’t even talk our child into trying one bite.
All kids are picky eaters in some area. Mine was just picky in almost every area. Helpful friends would give me tips on cramming extra veggies into sauces, but he doesn’t eat sauce. Family members would try to gently admonish me into making him try 2 bites of what we put in front of him, but they didn’t get that we had tried that stuff a million times. Reward systems, threats, hiding foods, making him remain at table until he tried something, making it a game or a contest, reading books together about nutrition and trying foods (I’ve read Green Eggs & Ham to him about 500 times in the hopes that it would click with my son) and me reading books and websites on stubborn kids, food chaining, kid friendly recipes, you name it. It’s hard for others to see what efforts you are putting in on your own time and in your own home, but believe me the effort was there.
When Scooter turned 4 last year and I realized we had hit the 2 ½ year mark with our eating challenges and I still wasn’t getting anywhere with him I began to feel despondent about the whole thing. Is it possible to let your kid eat this way as long as he wants and then eventually he will just start eating? That’s what my doctor was telling me and as much as I love him, I was getting pretty tired of that answer. I started looking for possible medical reasons for the behavior and read even more books. I thought maybe I could come up with a couple of things to suggest a test for, like thyroid or something. And in the meantime, I just kept plugging on. On the rare occasion that Scooter tried a new juice flavor or even a new type of chip we rewarded him with a marble in his bucket (when filled he gets to pick a ‘big’ toy from the store, but at this rate it could be 3 years). I insist on a healthy food option for him before a not-so-healthy one and I try to make most of his ‘snacks’ healthy in disguise. Even the juice he likes has veggies hidden in the mix.
White Rice, Flavored Kid Type Gogurt, PB Crackers (only store bought), shredded cheese, carrots on occasion, red grapes, apples, fruit bars, granola bars, dry cereal, milk, some juice, and crunchy bite size snacks. That’s it. (Of course chocolate and cookies and cake and popsicles and mint chocolate chip ice cream too, but for the healthy that’s it.) My child’s diet for the last 3 ½ years. No meat. No potatoes unless they are in French fry form (must not have any peel or seasoning) or on a rare occasion hash browns. No pasta. No bread. He likes Eggo Waffles and Pop Tarts, but I go long stretches without buying those so that he isn’t getting too many breakfasts coated in sugar.
Wouldn’t you feel frustrated and lost? I was. And there were other things going on too, but I didn’t link them until recently. I just thought they were quirky things about my kid. Except for one little thing which I had even asked my doctor about it in relation to Scooter’s diet on more than one occasion. He didn’t think anything of it though and it took a long time for everything to come together. What was that item? Smell. Scooter has a ridiculously sensitive sense of smell.
When Scooter was about 2 ½, I was making Tyler’s lunch one morning on the far end of my kitchen. Around the corner and a good 40 feet away, Scooter was laying on the couch under a blanket. He didn’t know what I was doing. He hadn’t seen me yet. I didn’t even know he was there until he started yelling at me to ‘Stop it!’ What? Stop that momma. I don’t like that smell. What smell? What are you talking about? The bread. I don’t like the smell of that bread! It was the first of many incidents like that, but he wasn’t always vocal about the problem. He would just occasionally complain about certain food smells. It was odd and quirky, but not alarming. I did ask my doctor if his sensitivity to smell could be keeping him from eating different foods, but he didn’t think so and I let it go.
In the back of my mind, I was thinking of my grandfather though. Grandpa Brawand had practically no sense of smell which limited his sense of taste. That man ate EVERYTHING and then some. It’s not that he couldn’t taste at all, he could and loved a good meal and even more a good dessert. But he was so easy going with food, good or bad, and I think that was because he couldn’t smell everything. You were taught in school, just like me, that smell and taste are linked. Maybe that was part of Scooters problem, right? Right. But what can you do about that?
In all of my reading, I kept coming across something; a possible disorder. I would read the short lists of symptoms and think that most of them didn’t really apply and the ones that did could be something or anything else. I would tell myself that I was reading my kid into this list, this disorder, because that was the book I was reading today. I would ponder and then discard. Because it sounded crazy, and subjective and ethereal. It didn’t sound like something REAL to me. And my kid didn’t have ALL the symptoms, he only had symptoms in some of the areas.
As we rounded the year out and started a new one and as Scooter’s 5th birthday approached my worries for how he was going to handle himself in Kindergarten got stronger. Scooter had gotten to a point that he could not stay in the room with us when I made certain foods for dinner. He would run and hide in my bedroom until we had cleared the table when I made things like Pork Loin or Ham. If the meal was beef mixed with strong spices he would insist on sitting on the other side of the living room while we ate. Most of the time, if chicken was for dinner he would join us at the table. If his brother was eating Mac n Cheese, he would insist that he stayed on the other side of the room from him. Heaven forbid Riley ate a piece of bread or a bagel and decided to carry it around the house. Scooter would yell ‘Don’t come by me! Stay away!’ In fact, if I touched bread for Riley, he would cry and beg me to wash my hands before I touched him or anything he wanted. I wasn’t worried about whether Scooter could learn to read and write. I was worried about how he would handle sitting in a lunch room with 100 kids eating PB&J sandwiches when he couldn’t stand the smell of even one piece of bread. What was going to happen? When he started to complain that he didn’t always like the smell of Riley or Scott, and insisted that Riley take another bath or shower I began to get agitated. Am I compensating too much? Is this for real? But, I knew it was.
I went to a movie in January with a friend who has a career in special education, deaf education and preschool child development. She deals with kids on many, many different levels all day every day. She has an adult son with Aspergers who is now a sharp shooter in the Marines. She’s seen a lot, but she has never tried to push anything on me with my kids. She just listens and sometimes guides me gently to good resources. She is the first to rejoice in some of my complaints about my kids for their wonderful, amazing normal-ness. I love her. After the movie we sat in her car talking and I told her all about my concerns, again. She had been hearing them for a couple of months. And then she said: Have you ever heard of something called Sensory Integration Disorder?
There it was. The ‘Disorder’. The one that I had been reading about for months and discarding, most likely because it came with the word ‘Disorder’ attached. And I admit to you now, that I had never pushed my research on it until then. I hadn’t done any research on the internet or found any books specifically about SI. (See, there’s the first Acronym, SI, Sensory Integration. That’s what they call kids like mine. I am grateful that they drop the ‘D’, let me tell you.) Reading would have been my first course of action normally, since I am an information junkie, but I didn’t really want to know so I just didn’t look.
I told L that yes I had, but I didn’t think it was Scooter because he didn’t have issues with movement, for example, or cover his ears for every loud noise out there, etc. L said that yes, that was true, but every kid with SI was different and sensitive in different areas. It wasn’t about whether or not he had every symptom, but if he had a whole lot of symptoms in a certain area and whether or not they were affecting him in his daily life. Oh. Hmmm.
I started mining for information and looked everywhere for data and lists and explanations and treatment options. My first concern was if my kid fit the profile or not. My second was what could be done if he did fit the profile. And finally, what do I do next? When I found very long and detailed lists of symptoms and questionnaires that I could fill out and see where we stood, it was obvious to me immediately that Scooter was going to fall in this spectrum in a big way. The smell sensitivities and picky eater problems were the most prevalent, but there were more.
Scooter does have some audio sensitivity, just not obviously so. He doesn’t run away when I turn on a vacuum cleaner or a hair dryer, but he has always been able to hear sounds from far away more than the rest of us. He went through a long period when he wouldn’t go to Home Depot with us, because the loud tools in the lumber department and tool rental area were too much for him and he left the room when dad & I used our power tools last summer. He spent 2 weeks last fall having trouble getting and staying asleep because of some noise in his room that no one else could hear. I finally found a small play phone in the back of his closet, buried under a whole pile of stuff that was emitting a very soft, almost non-existent, occasional squeak as the battery inside died. He also has some visual sensitivity, mostly regarding bright lights. Car rides during the summer months with him can be difficult as he begs me to turn the car and get the sun out of his eyes, even with dark sunglasses.
The rest of Scooter’s issues fall in what is called ‘tactile defensiveness’. It never occurred to me when he was little that his refusal to run barefoot in the grass was an issue. I didn’t consider that his extreme dislike of having his hands or feet dirty was a problem. We just thought it was super cute. I bought him his first pair of crocs when he wouldn’t walk on the sand at the beach or put his feet in a lake, river or ocean because of the sand and silt underneath the water. Only problem was, crocs have holes in them and sand can get inside. Scooter will gag often during his teeth being brushed and often can’t stand the feel of the bristles on the brush. Textures in foods are very prominent to him as well as their smell and taste. He can’t always get past smell and texture to even find out if he likes a taste. Sometimes he won't eat his rice because he says it 'smells too soft', I don't know exactly what that means to him, but it's enough to keep him from eating. It turns out that some of the reasons that he is initially so quiet and shy in new situations stems from being so overwhelmed by sensory input that he needs his dad or I to cling to and help filter through all the stimuli.
The good news in all of this is that there is a lot of help out there. Kids with SI respond extremely well to Occupational Therapy and a sensory diet (tailored to each child, a gentle expansion of their sensory world). There isn’t a cure, but they can be ‘de-sensitized’ a little while being taught how to process sensory input better. They can learn to cope, even if they are always sensitive. For instance, some of these kids may never learn to tolerate meat and will become vegetarians while learning to tolerate other sources of protein and others once their brain catches up with their bodies may grow out of it by adulthood with only mild sensory issues that resemble quirks. With a high frequency of treatment initially, they can be weaned and tapered off within 6 months in most cases. The problem is that you don’t just start with working on eating more foods because they aren’t going to try something they can’t touch or smell. It’s a process.
I make this sound pretty easy, jamming it into this very lengthy blog, but it’s really been challenging. Finding the right clinic, figuring out insurance and cost, scheduling and then actually getting my kid to participate have been some pretty large obstacles. It’s also a really long story so I’ll sum up! The first clinic I tried was highly recommended, 15 minutes from home, quite expensive and didn’t work with insurance at all. I knew I was going to be out of network on all this stuff anyway, but these people wanted everything out of pocket and then let you file yourself. All sessions were 1 hour, $160 per, and they wanted Scooter there for 2-3 sessions per week for the next 6 months, followed by another year of weekly and then bi-weekly treatments. We had a screening there, not a full evaluation (for which they wanted $750) and a couple of cranial-sacral treatments (pressure point kind of thing with head and neck) and then I put on the brakes.
Sometimes it’s good to be an information junkie. I knew from my research that frequency was more important than length for OT treatments, most evals in my area topped out at $300 max and any OT clinic should accept ANY eval, not insist on their own only, which this place was doing. My sister got on the phone all the way from Vegas and helped me do some more looking. (It turns out I live in a hot spot in the metroplex for pediatric occupational therapy. Who knew?) Anyway, I waited to start the treatments until I had all of my ducks in a row since frequency and consistency were the 2 biggest keys for helping kids with SI. We found a clinic that is literally in my subdivision! They do all the insurance filing and I just get to pay my copay now that the deductible has been met. They also will break sessions down into shorter periods than an hour when they need to, but since they always bill an hour to insurance, Scooter gets a full hour if he can tolerate it. Scooter had a full evaluation there for sensory integration by 2 occupational therapists and he now sees Miss Lauren twice a week.
I got two huge pieces of good news during our initial evaluation and they both revolved around the fact that Scooter loves Mint Chocolate Chip Ice Cream. First, mint is a very strong smell and flavor which means he can probably be taught to tolerate other strong flavors and smells eventually. Maybe not all of them, but definitely more than what we see today. He loves mint in general so the smell can also be used in different ways to help him tolerate smells he doesn’t like in situations where I want him to stay put and behave instead of running away or having a meltdown. Also, Mint Chocolate Chip Ice Cream is a mixed texture food. It’s the only one that Scooter will eat right now, but some kids with SI never develop the ability to tolerate mixed texture foods. Since Scooter can tolerate one, he has the capacity to someday tolerate more. I know it sounds crazy, but these were enormously helpful to my state of mind. After all, our life now sounds like this: SI – Sensory Integration Disorder, OS – Oratory Sensitivity, VS – Visual Sensitivity, TD – Tactile Defensiveness, OT – Occupational Therapy. And the list gets longer, but that’s later in our story. I am constantly reminding myself that I have the same Scooter today that I had yesterday and that I will tomorrow. Acronyms and labels are just tools to help him. Some days I have to remind myself more than once.
He just finished week four of therapy. One month down of what they estimate to be a 3-6 month time frame of working with him. It shouldn’t be twice a week for all of that. At some point, they will start tapering off as he meets his goals. We have already seen progress in some areas. Scooter really likes to ‘play’ with Miss Lauren and Riley hounds me the entire hour we wait because he got to play with Scooter the first time and thinks he should be in there too. Scooter tells him ‘Riley, I’m five now so I do this, you are not five.’
At the beginning of each session, Lauren ‘brushes’ Scooter. This is the weirdest and coolest thing and I totally don’t get why it works, but I love that it does. It’s a special soft surgical type brush. Scooter gets brushed in a downward motion on his arms, legs and back ten times each. This is followed by joint compressions on all of his limbs. The effects last about 2 hours and doing it is like flipping a switch on my son. He goes from being shy, disconnected and uncooperative to calm, responsive and ready to work. It’s crazy. I ordered some brushes for home and I now do this routine before bedtime or going somewhere he would normally have a hard time interacting or even prior to dinner if we are having foods with strong smells. I also do it when he starts to have a meltdown that I know is not related to anything other than him having a hard time dealing with everything around him.
Scooter also now has 2 ‘smell sticks’ which are kiddie-flavored-chapsticks. When I served pork loin a couple weeks ago, Scooter got his cherry smell stick and sat at table with us for our entire meal, smelling his stick and chatting away with us. That’s an accomplishment, a big one. They are working hard on his tolerance for textures & smells and building up his fine motor skills which are very weak it turns out and that is in part related to the tactile defensiveness. To him, it’s just play time where he gets a lot of attention, but it’s very structured and helpful. He actually went outside barefoot the other day to play in a pile of leaves. That isn’t something that is normal for him and I am grateful for all of these little tiny signs of progress.
Sensory Integration Disorder (Also referred to as Sensory Processing Disorder) is basically a developmental disorder that makes it hard for someone to process sensory input. They are either over or under sensitive in a range of senses. We all have some of these sensitivities, but these kids have what you and I deal with times a hundred or a thousand. When I first started mentioning it to people, I got a lot of very strange looks and sometimes rude comments. Lots of people think he can just grow out of it or I should stop accommodating him so much. I get it, it sounds crazy. But it is very real and Scooter needs a little help, so we are giving it to him.
At the end of the day, I don’t really care if everyone gets it or believes it or not. I am just doing what I need to for my munchkin to help him. And in trying to get him all the help I could, I discovered a lot more about my son that I wasn’t really prepared for. But, that’s the next blog – the next phase. More alphabet soup. More ABC’s and 123’s.
Scooter is an incredible kid. He’s so smart, creative and funny. I love him so much I can’t hardly hold it in! When I think about what he’s been dealing with all these years, and still thriving; all that overwhelming sensory overload and he is still a super loving, silly kid - I get all teary eyed. I used to think that the word ‘disorder’ was a bad thing, that it would mean something or someone was ‘less’, at least if it hit my family anyway. Scooter isn’t ‘less’, he’s so much MORE. He deals with smells and sounds and the way things feel that the rest of us barely notice in a much more pronounced and major way and he just keeps on moving, learning and playing. You gotta love that! I do. I am so proud of him and the work he is doing. More tomorrow on where this journey has led us and what our spring has been about. Scooter has a million more challenges ahead, but if anyone can handle them – he can and therefore I can.
God Bless You and Keep You
Tuesday, May 10, 2011
Fudge!
Mom said I had to write this one down, so I wouldn't forget. I don't know how I'll ever forget this one, but I've been known to go spacey on important stuff before so here goes.
For the sake of decency, I will be using the word 'fudge' in place of the offensive four letter word that starts with 'f' that was the true source of serious conversation and hilarity yesterday. Keep in mind, I was still in my robe and only about 3 sips into my first cup of coffee when this dialogue began. I wasn't on my A-game, otherwise I am sure I would have been much more quick witted and had better responses for my 5 year old.
Scooter has been experimenting with rhymes and initial sounds of words for months. Intensively experimental, I might add. I often spend 30-45 minutes at a time answering questions like 'Does happy rhyme with haggy?' Scooter knows he is being silly when he makes up words to rhyme and he likes to make me laugh. It cracks him up.
So yesterday morning he started out with 'Does Randy (our next door neighbor) rhyme with Riley?'
Yes
Does it rhyme because it has the same sound?
Yes, and if we called you Scotty instead of Scooter, you would rhyme too
No, I have an 's' sound
Yes, but rhyming is the end sound, not the beginning. Scotty rhymes with Riley, but Scooter doesn't. Scooter rhymes with rooter & pooter, that's why I call you my Scooter, Rooter, Pooter.
Smiles & pause to think
Does Donald Duck rhyme with Donald Day?
No, those words all have D sounds but Duck and Day don't have the same end sound, so they don't rhyme.
(I should add here that Scooter KNOWS this already, but he purposely gives me things that don't rhyme to test me. He might be testing me on rhymes, or it could be he's making sure I am listening to him - not entirely sure.)
Does Donald Duck rhyme with Donald Fudge?
silence
Mom, does Donald Duck rhyme with Donald Fudge?
Ummm, well yes it does, but . . .
It does? Donald Duck rhymes with Donald Fudge?
Yes, well, it does rhyme, but that's not a word we use . . .
What word, Fudge?
Yes
Why don't we use Fudge? I like the word Fudge.
Well, it isn't really a nice word so we don't use it.
Why not?
Because it isn't nice.
Why isn't Fudge nice? What's wrong with Fudge?
Well, some people think it's a bad word and we try not to say it.
But, what does Fudge mean?
much stumbling around and gulping of coffee
Mom, what does Fudge mean?
(at the moment, I was thinking the situation was one HUGE cluster-fudge which prompted my answer)
Well, it kind of means to mess up really, really bad, but it's a really bad way to say it and most people don't like that word so we don't say it.
I can say Fudge! I made it up! It's my word. I can say Fudge if I want to say Fudge.
gulping a LOT more coffee
Mom, does coffee rhyme with boffee?
Big grins from the 5 year old as we moved out of a mine field and into safer territory.
Yes, it does.
Later that morning I took the boys to officially register Scooter for Kindergarten next year. I just kept praying he didn't decide to use the new word he 'made up' that morning. It was one of those times I was actually grateful that he is so shy and quiet. I was also pretty happy that Riley had missed the entire exchange and wouldn't repeat anything.
Mom laughed so hard when I told her this that I had a hard time telling the whole story and I am certain I heard her literally fall out of her chair. Scotty didn't think it was quite as funny. He wanted to know where he heard the word which led me to a long explanation of pre-reading skills and the game Scooter likes to play during the day.
It really is funny, as long as he doesn't use the word out in public anyway.
God Bless!
For the sake of decency, I will be using the word 'fudge' in place of the offensive four letter word that starts with 'f' that was the true source of serious conversation and hilarity yesterday. Keep in mind, I was still in my robe and only about 3 sips into my first cup of coffee when this dialogue began. I wasn't on my A-game, otherwise I am sure I would have been much more quick witted and had better responses for my 5 year old.
Scooter has been experimenting with rhymes and initial sounds of words for months. Intensively experimental, I might add. I often spend 30-45 minutes at a time answering questions like 'Does happy rhyme with haggy?' Scooter knows he is being silly when he makes up words to rhyme and he likes to make me laugh. It cracks him up.
So yesterday morning he started out with 'Does Randy (our next door neighbor) rhyme with Riley?'
Yes
Does it rhyme because it has the same sound?
Yes, and if we called you Scotty instead of Scooter, you would rhyme too
No, I have an 's' sound
Yes, but rhyming is the end sound, not the beginning. Scotty rhymes with Riley, but Scooter doesn't. Scooter rhymes with rooter & pooter, that's why I call you my Scooter, Rooter, Pooter.
Smiles & pause to think
Does Donald Duck rhyme with Donald Day?
No, those words all have D sounds but Duck and Day don't have the same end sound, so they don't rhyme.
(I should add here that Scooter KNOWS this already, but he purposely gives me things that don't rhyme to test me. He might be testing me on rhymes, or it could be he's making sure I am listening to him - not entirely sure.)
Does Donald Duck rhyme with Donald Fudge?
silence
Mom, does Donald Duck rhyme with Donald Fudge?
Ummm, well yes it does, but . . .
It does? Donald Duck rhymes with Donald Fudge?
Yes, well, it does rhyme, but that's not a word we use . . .
What word, Fudge?
Yes
Why don't we use Fudge? I like the word Fudge.
Well, it isn't really a nice word so we don't use it.
Why not?
Because it isn't nice.
Why isn't Fudge nice? What's wrong with Fudge?
Well, some people think it's a bad word and we try not to say it.
But, what does Fudge mean?
much stumbling around and gulping of coffee
Mom, what does Fudge mean?
(at the moment, I was thinking the situation was one HUGE cluster-fudge which prompted my answer)
Well, it kind of means to mess up really, really bad, but it's a really bad way to say it and most people don't like that word so we don't say it.
I can say Fudge! I made it up! It's my word. I can say Fudge if I want to say Fudge.
gulping a LOT more coffee
Mom, does coffee rhyme with boffee?
Big grins from the 5 year old as we moved out of a mine field and into safer territory.
Yes, it does.
Later that morning I took the boys to officially register Scooter for Kindergarten next year. I just kept praying he didn't decide to use the new word he 'made up' that morning. It was one of those times I was actually grateful that he is so shy and quiet. I was also pretty happy that Riley had missed the entire exchange and wouldn't repeat anything.
Mom laughed so hard when I told her this that I had a hard time telling the whole story and I am certain I heard her literally fall out of her chair. Scotty didn't think it was quite as funny. He wanted to know where he heard the word which led me to a long explanation of pre-reading skills and the game Scooter likes to play during the day.
It really is funny, as long as he doesn't use the word out in public anyway.
God Bless!
Wednesday, May 4, 2011
The Worst and the Best . . .
Parenting is usually a lot of days that look the same, strewn together for long periods filled with the every day growing, shaping and playing that kids seem to inch through minute by minute, peppered with momentous achievements and incidents. Changes are so subtle and then I am shocked to realize suddenly that one of my boys is 'bigger' or 'older' or 'smarter'. There are good days and bad. Most of them are good. And most of the bad, aren't really that bad.
A bad day usually goes bad because there were more than the normal number of temper tantrums, someone skinned a knee, the boys are all fighting over one toy every hour on the hour, getting a 10 year old to do homework on the first warm day of the year proved to be an epic battle of wills, or I spent an inordinate amount of time arguing with a preschooler about what is or is not a HEALTHY snack. Over all, most of the bad are not that bad. Most of the bad days could upon further evaluation be moved over to the good column, just further down on the list.
Some of the bad days, luckily very few in my blessed experience, are really bad. Some are awful. Some of those bad days leave you feeling sick and exhausted and depleted. Some of those days leave you wondering who you think you are and what you think you are doing. Some of those days . . .
I've had my share. I've had quite a few ER visits and scares. I've also had my share of days that I completely lost it in front of my kids and hoped that they would not remember their mother ranting like a crazed lunatic. I cussed like a banshee at Tyler's dad once when he was taking Tyler away from me for a visit for the first time. I slammed the car door on my then 11 month old before they drove off. It was a misunderstanding about the schedule and I was scared and angry. I yelled and swore like a sailor. I was so embarrassed about my behavior to Brian and in front of his parents, but worse - my son. Then I was devastated that this was how I had sent him off with his family. He knew them well, but it was the first time they had their visitation away from me and I wasn't prepared for it on that particular day. It was terrible and I was humbled. I never once sent Tyler off in anger or resentment or anything less than benign happiness again.
Tyler once and Riley thrice have woken me up with croup like coughs and breathing that scares the bejeezus out of a mother in the middle of the night. Riley's in particular seems to come from nowhere, have no cause and be severe enough that he has trouble catching his breath enough to try to cough. It's not asthma, and it is really terrifying. We have now been prescribed a nebulizer so that I can be prepared for the next time.
When Scooter was just two weeks old, we had a family Easter at Cedar Creek and my infant son stopped breathing, choking on I knew not what. He recovered and breathed, but it happened more than once that day - landing us in the ER that night when the choking was followed by projectile vomiting. A few more weeks of occasional bouts like this led to the discovery of fairly severe reflux, but it was months before I listened to the radio in the car. I was always on alert for whether or not my son was breathing or choking. One of the incidents had happened while I drove alone and I pulled over on the side of the road trying to get him to clear his passage of the thick, clingy mucus, and I had somehow forgot the sucky-thing at home that day. Luckily Walgreens was on the next corner and I raced there with Scooter in my lap. I had the new tool open and used it well before I breathed again and then paid for my purchase.
At 18 months, Riley fell head first out of Scott's truck bed. It was parked in our driveway and the kids were climbing all over - playing. Scott was following Riley around the truck, but he wasn't fast enough and toddlers are top heavy. He leaned over and fell out, flat on his back in the grass (thank you!!!!). Scott brought him inside and while we sat there our very pale, but thankfully conscious and moving, child started puking. Off I ran to the hospital again. Luckily it was just a concussion.
Last summer, Riley gave me two big scares. The first was at the family lake house which has a loft over the living room with a very narrow and steep spiral stairway. We have blocked this monstrosity with a chair for our toddlers for years, but since Cori & Scooter were able to navigate the steps fairly easily we were forced to let Riley play some too. Scott was the first to cave and then he came outside and told me. Since there was no way I was letting them play on these steps unsupervised I went inside and sat in the living room with Aunt Bonnie to chat. She was actually in a chair next to the staircase, I was across the room on the couch. It was a miracle, really, that I looked up when I did. Riley was teetering on the edge of the top stair with one hand around the widely spaced rungs. I had opened my mouth and was standing up to tell him to be careful, etc. And he fell - from 12 feet up. I don't remember anymore if it was head first or how he tumbled. I do know that when I caught him he was back down with his head first at a very scary angle. I still don't know how I got there in time - it was like slow motion, jumping across those 6 feet while he sailed downwards. Bonnie was reaching out as well, but she only got one hand under him while I somehow got my arms cradled and caught him just as his head was grazing the carpet. It could have been the worst day of my life, ever. Scott didn't really believe me at first until Bonnie and his brother, who saw from the kitchen, confirmed that he really had fallen and I had caught our baby by some gracious miracle. When I blithely make jokes about not taking a cruise any time soon because I worry Riley would go over the rails, I am really NOT joking. I am dead serious.
The second scare involved a piece of toy/model car that Riley swallowed and got stuck going down. He was gagging and puking and occasionally turning purple. Then he was fine. I took him to the er to be safe, but then on the way there he started having problems again. I found myself stopped on a busy road trying to help him, just blocks from the hospital. He recovered again and we made it to the hospital. By the time we left we were fairly certain that the piece had un-stuck and moved downward. It has never 'appeared' that I can tell, and I occasionally worry about what that inch long oval plastic body is doing to his body for the long term. Like I needed something else to worry about.
I've also had quite a few bad parenting days that involved finding out truths and facts about my kids that I would rather not know, but I'll save that discourse for another day. Most of these incidents though, are surprises. Out of the blue instances that in most cases you don't see coming. They suck and they are often harrowing and scary, maybe because of their emergent nature. And then when they are all over and done with and all is well, it's hard to tell if those days should fall in the bad or the good column after all.
So the very fact that yesterday was planned and was something I did intentionally to my child is what made it the single most horrific and awful parenting day of my career to date. It was the absolute WORST day ever.
It was Scooter's dentist appointment to fix his cavities. I sent Riley home with my dad the afternoon beforehand and Scooter had been moaning about his absence ever since. Tyler played with him which helped but Scooter really wanted Riley to go with him to the dentist. We arrived at 8:30 and it took 3 of us to get Scooter to swallow his dose of valium, but once he had we camped out in the waiting room and waited for sleep that never came. He was loopy and compliant and kind of silly. His head bobbed and it was obvious that if he stopped moving he would pass out, but I couldn't get him to stop playing or moving around.
So at 10 a.m. we went back to the procedure room and he wasn't asleep. He was awake and therefore not happy about the nitrous mask. Being a pediatric dentist, they had flavored 'piggy noses', but the smells were just too strong for Scooter on his face. We tried a non scented mask, but even though he struggled slightly less, Scooter could smell or taste a trace of the gas and refused to breathe it in. If they put it over his nose, he breathed through his mouth and vice versa. The assistants figured if he could just get a couple of good breaths he would calm enough to make him compliant again. It was obvious as I was called over to hold him and secure his arms that his valium buzz was long gone.
After a good 10 minutes of Scooter crying and struggling and none of us succeeding, I was ready to call it a day. But the staff wasn't. They wanted to use a 'huggie-board' to secure him so that they could get the work done. I agreed, and signed a release. I took Scooter to the bathroom while they got ready and when we came back there was a white stretcher board laying on the chair. Scooter knew something was different and asked what that was. His voice cracked with fear and I know now that I should have turned around and left at that moment.
It was the voice that kept me there. The hard inner voice that tells us when we must do what must be done. Scooter couldn't chew on one side of his mouth. The cavity had to be filled. They promised they would be fast. I laid him down and watched the staff strap his wrists into bands and then wrap him in white mesh to hold him still then secure his legs with another band. Huggie board is a nice friendly term to disguise what is essentially a straight jacket. They didn't try the nitrous again. They numbed and injected and drilled. They did their job while Scooter screamed. Screamed in fear and anger. Cried in frustration and with pleading.
At first I sat in the mom chair in the corner, tears streaming down my face. They asked me if I needed to step out, but there was no way in hell I was leaving my child. Because while I sat there I was having flash backs of a test I had to endure when I was five. It was my kidneys and my parents could not come in with me. They were forced to sit just outside the door of a radiology test room while I cried and screamed. I remember being pulled away from them. I remember that fear too well. I wasn't leaving. (Could be why I am still a home-body and like to do everything with my parents, but who knows?)
I pulled myself together and refused to cry anymore. I stood at the dental chair and stroked the only part of my son that was available to me - his bare feet. They worked quickly so I am not sure if Scooter was fully numb before they drilled. He told me later he could feel it, but I am sure he didn't have nerve pain. I had to keep reminding myself that he wasn't actually in pain from the procedure. But he was definitely hurting. Crying, screaming and gagging. He wouldn't breathe through his nose so he kept choking. At one point he was puking and I was ready to break us out of the joint. In between drilling and filling, when there were less tools jammed into his mouth, he took a big breath and wailed 'I want Riley!' and I almost lost it.
I just kept praying, over and over, 'God please protect his spirit!', because that was what I was worried about. Scooter, with his impeccable recall, will probably not ever forget this. I never forgot. I spent 20 years with a fear of needles that bordered on the irrational (even forcing me to ask for nitrous and drilling without a shot at my own dental appointments) thanks to that test when I was five. Although becoming a mother helped me get over the hump with my fears, I am still not a fan. I avoid needles like the plague and I can't watch when someone else gets pricked either.
We left and went straight to my mother to pick up Riley. Scooter dozed a little in between moaning 'I don't like it!' regarding his now numb mouth. My mom wanted to hug me but I couldn't let her because I would fall apart. And I didn't want to fall apart in front of Scooter. I came home and cried in the bathroom, a lot. Explaining what happened to Scott or anyone else has proven difficult so far because I generally want to sob through it and saying it out loud somehow makes it much, much worse.
Kids are resilient. After Scooter suffered through the 30 minutes it took when the numbing wore off and feeling returned, he was ready to play with his brother just like any other day. And I would like to think that he will forget and move on, but I think I know better. At bedtime he was irrational about a pj shirt Riley was wearing and he wanted back. It took me a long time to settle him down and get him to sleep and I know it was the stress of his day. The truth is, I may never get him back in a dental chair. I did tell the dentist we were never doing that again. If he ever has another cavity, we will be doing IV sedation for him, regardless of the cost. I'd rather him be annoyed with me about one shot than put him through this again.
I really think I made the wrong choice yesterday. I know the cavity needed to be fixed, but I should never have agreed to the huggie board. As time goes on, I know I will be able to talk about this and think about this more clearly, but right now I am just horrified. I am horrified about what we did to this child and what it might have done to him permanently. Maybe I'm wrong and he'll be fine. I know eventually I will be okay. But, I know my kid and this was NOT good.
In my devastation and depression, I escaped last night for a couple of hours to do coupon shopping at Walgreens and CVS. That cheered me a little. Finally getting my sister on the phone for a while helped quite a bit more. Scott passed out five minutes after I got home since he had stayed up half the night on Monday to watch the Mavericks and LA in the playoffs. I watched a little tv and poked around the kitchen. On the counter was my 'encouragement journal' from MOPS the day before. As a surprise craft, steering committee had gifted us with a list of adjectives obtained in secret from our husbands that they and our children would use to describe us. We cut out the words and decorated the front of the journal with them. The list had overwhelmed me on Monday, the way I was seen. The words were meant to encourage us on those days that we were feeling 'less'.
I was definitely feeling 'less' yesterday. I looked at those words again and smiled. And then I cried all over again, but it wasn't the same. I wasn't sobbing in grief this time, but in gratitude and relief. Some days are so awful, but I can still find a ray of sunshine at the end of them. Scott had consulted with the boys for my words so I like looking at the list and thinking about how they see me. And since Scooter seems to be okay for now, I am going to try and focus on these things this week. I'd like to share them with you:
MOM
CARING
STRONG
SWEET
UNSELFISH
LOVING
COOL
UNDERSTANDING
WONDERFUL
Isn't that amazing? Isn't that wonderful? Isn't that just the BEST???!!!!????
The worst and the best - at the end of the day was it a bad one or a good one? The jury is still out.
Love and God Bless!
A bad day usually goes bad because there were more than the normal number of temper tantrums, someone skinned a knee, the boys are all fighting over one toy every hour on the hour, getting a 10 year old to do homework on the first warm day of the year proved to be an epic battle of wills, or I spent an inordinate amount of time arguing with a preschooler about what is or is not a HEALTHY snack. Over all, most of the bad are not that bad. Most of the bad days could upon further evaluation be moved over to the good column, just further down on the list.
Some of the bad days, luckily very few in my blessed experience, are really bad. Some are awful. Some of those bad days leave you feeling sick and exhausted and depleted. Some of those days leave you wondering who you think you are and what you think you are doing. Some of those days . . .
I've had my share. I've had quite a few ER visits and scares. I've also had my share of days that I completely lost it in front of my kids and hoped that they would not remember their mother ranting like a crazed lunatic. I cussed like a banshee at Tyler's dad once when he was taking Tyler away from me for a visit for the first time. I slammed the car door on my then 11 month old before they drove off. It was a misunderstanding about the schedule and I was scared and angry. I yelled and swore like a sailor. I was so embarrassed about my behavior to Brian and in front of his parents, but worse - my son. Then I was devastated that this was how I had sent him off with his family. He knew them well, but it was the first time they had their visitation away from me and I wasn't prepared for it on that particular day. It was terrible and I was humbled. I never once sent Tyler off in anger or resentment or anything less than benign happiness again.
Tyler once and Riley thrice have woken me up with croup like coughs and breathing that scares the bejeezus out of a mother in the middle of the night. Riley's in particular seems to come from nowhere, have no cause and be severe enough that he has trouble catching his breath enough to try to cough. It's not asthma, and it is really terrifying. We have now been prescribed a nebulizer so that I can be prepared for the next time.
When Scooter was just two weeks old, we had a family Easter at Cedar Creek and my infant son stopped breathing, choking on I knew not what. He recovered and breathed, but it happened more than once that day - landing us in the ER that night when the choking was followed by projectile vomiting. A few more weeks of occasional bouts like this led to the discovery of fairly severe reflux, but it was months before I listened to the radio in the car. I was always on alert for whether or not my son was breathing or choking. One of the incidents had happened while I drove alone and I pulled over on the side of the road trying to get him to clear his passage of the thick, clingy mucus, and I had somehow forgot the sucky-thing at home that day. Luckily Walgreens was on the next corner and I raced there with Scooter in my lap. I had the new tool open and used it well before I breathed again and then paid for my purchase.
At 18 months, Riley fell head first out of Scott's truck bed. It was parked in our driveway and the kids were climbing all over - playing. Scott was following Riley around the truck, but he wasn't fast enough and toddlers are top heavy. He leaned over and fell out, flat on his back in the grass (thank you!!!!). Scott brought him inside and while we sat there our very pale, but thankfully conscious and moving, child started puking. Off I ran to the hospital again. Luckily it was just a concussion.
Last summer, Riley gave me two big scares. The first was at the family lake house which has a loft over the living room with a very narrow and steep spiral stairway. We have blocked this monstrosity with a chair for our toddlers for years, but since Cori & Scooter were able to navigate the steps fairly easily we were forced to let Riley play some too. Scott was the first to cave and then he came outside and told me. Since there was no way I was letting them play on these steps unsupervised I went inside and sat in the living room with Aunt Bonnie to chat. She was actually in a chair next to the staircase, I was across the room on the couch. It was a miracle, really, that I looked up when I did. Riley was teetering on the edge of the top stair with one hand around the widely spaced rungs. I had opened my mouth and was standing up to tell him to be careful, etc. And he fell - from 12 feet up. I don't remember anymore if it was head first or how he tumbled. I do know that when I caught him he was back down with his head first at a very scary angle. I still don't know how I got there in time - it was like slow motion, jumping across those 6 feet while he sailed downwards. Bonnie was reaching out as well, but she only got one hand under him while I somehow got my arms cradled and caught him just as his head was grazing the carpet. It could have been the worst day of my life, ever. Scott didn't really believe me at first until Bonnie and his brother, who saw from the kitchen, confirmed that he really had fallen and I had caught our baby by some gracious miracle. When I blithely make jokes about not taking a cruise any time soon because I worry Riley would go over the rails, I am really NOT joking. I am dead serious.
The second scare involved a piece of toy/model car that Riley swallowed and got stuck going down. He was gagging and puking and occasionally turning purple. Then he was fine. I took him to the er to be safe, but then on the way there he started having problems again. I found myself stopped on a busy road trying to help him, just blocks from the hospital. He recovered again and we made it to the hospital. By the time we left we were fairly certain that the piece had un-stuck and moved downward. It has never 'appeared' that I can tell, and I occasionally worry about what that inch long oval plastic body is doing to his body for the long term. Like I needed something else to worry about.
I've also had quite a few bad parenting days that involved finding out truths and facts about my kids that I would rather not know, but I'll save that discourse for another day. Most of these incidents though, are surprises. Out of the blue instances that in most cases you don't see coming. They suck and they are often harrowing and scary, maybe because of their emergent nature. And then when they are all over and done with and all is well, it's hard to tell if those days should fall in the bad or the good column after all.
So the very fact that yesterday was planned and was something I did intentionally to my child is what made it the single most horrific and awful parenting day of my career to date. It was the absolute WORST day ever.
It was Scooter's dentist appointment to fix his cavities. I sent Riley home with my dad the afternoon beforehand and Scooter had been moaning about his absence ever since. Tyler played with him which helped but Scooter really wanted Riley to go with him to the dentist. We arrived at 8:30 and it took 3 of us to get Scooter to swallow his dose of valium, but once he had we camped out in the waiting room and waited for sleep that never came. He was loopy and compliant and kind of silly. His head bobbed and it was obvious that if he stopped moving he would pass out, but I couldn't get him to stop playing or moving around.
So at 10 a.m. we went back to the procedure room and he wasn't asleep. He was awake and therefore not happy about the nitrous mask. Being a pediatric dentist, they had flavored 'piggy noses', but the smells were just too strong for Scooter on his face. We tried a non scented mask, but even though he struggled slightly less, Scooter could smell or taste a trace of the gas and refused to breathe it in. If they put it over his nose, he breathed through his mouth and vice versa. The assistants figured if he could just get a couple of good breaths he would calm enough to make him compliant again. It was obvious as I was called over to hold him and secure his arms that his valium buzz was long gone.
After a good 10 minutes of Scooter crying and struggling and none of us succeeding, I was ready to call it a day. But the staff wasn't. They wanted to use a 'huggie-board' to secure him so that they could get the work done. I agreed, and signed a release. I took Scooter to the bathroom while they got ready and when we came back there was a white stretcher board laying on the chair. Scooter knew something was different and asked what that was. His voice cracked with fear and I know now that I should have turned around and left at that moment.
It was the voice that kept me there. The hard inner voice that tells us when we must do what must be done. Scooter couldn't chew on one side of his mouth. The cavity had to be filled. They promised they would be fast. I laid him down and watched the staff strap his wrists into bands and then wrap him in white mesh to hold him still then secure his legs with another band. Huggie board is a nice friendly term to disguise what is essentially a straight jacket. They didn't try the nitrous again. They numbed and injected and drilled. They did their job while Scooter screamed. Screamed in fear and anger. Cried in frustration and with pleading.
At first I sat in the mom chair in the corner, tears streaming down my face. They asked me if I needed to step out, but there was no way in hell I was leaving my child. Because while I sat there I was having flash backs of a test I had to endure when I was five. It was my kidneys and my parents could not come in with me. They were forced to sit just outside the door of a radiology test room while I cried and screamed. I remember being pulled away from them. I remember that fear too well. I wasn't leaving. (Could be why I am still a home-body and like to do everything with my parents, but who knows?)
I pulled myself together and refused to cry anymore. I stood at the dental chair and stroked the only part of my son that was available to me - his bare feet. They worked quickly so I am not sure if Scooter was fully numb before they drilled. He told me later he could feel it, but I am sure he didn't have nerve pain. I had to keep reminding myself that he wasn't actually in pain from the procedure. But he was definitely hurting. Crying, screaming and gagging. He wouldn't breathe through his nose so he kept choking. At one point he was puking and I was ready to break us out of the joint. In between drilling and filling, when there were less tools jammed into his mouth, he took a big breath and wailed 'I want Riley!' and I almost lost it.
I just kept praying, over and over, 'God please protect his spirit!', because that was what I was worried about. Scooter, with his impeccable recall, will probably not ever forget this. I never forgot. I spent 20 years with a fear of needles that bordered on the irrational (even forcing me to ask for nitrous and drilling without a shot at my own dental appointments) thanks to that test when I was five. Although becoming a mother helped me get over the hump with my fears, I am still not a fan. I avoid needles like the plague and I can't watch when someone else gets pricked either.
We left and went straight to my mother to pick up Riley. Scooter dozed a little in between moaning 'I don't like it!' regarding his now numb mouth. My mom wanted to hug me but I couldn't let her because I would fall apart. And I didn't want to fall apart in front of Scooter. I came home and cried in the bathroom, a lot. Explaining what happened to Scott or anyone else has proven difficult so far because I generally want to sob through it and saying it out loud somehow makes it much, much worse.
Kids are resilient. After Scooter suffered through the 30 minutes it took when the numbing wore off and feeling returned, he was ready to play with his brother just like any other day. And I would like to think that he will forget and move on, but I think I know better. At bedtime he was irrational about a pj shirt Riley was wearing and he wanted back. It took me a long time to settle him down and get him to sleep and I know it was the stress of his day. The truth is, I may never get him back in a dental chair. I did tell the dentist we were never doing that again. If he ever has another cavity, we will be doing IV sedation for him, regardless of the cost. I'd rather him be annoyed with me about one shot than put him through this again.
I really think I made the wrong choice yesterday. I know the cavity needed to be fixed, but I should never have agreed to the huggie board. As time goes on, I know I will be able to talk about this and think about this more clearly, but right now I am just horrified. I am horrified about what we did to this child and what it might have done to him permanently. Maybe I'm wrong and he'll be fine. I know eventually I will be okay. But, I know my kid and this was NOT good.
In my devastation and depression, I escaped last night for a couple of hours to do coupon shopping at Walgreens and CVS. That cheered me a little. Finally getting my sister on the phone for a while helped quite a bit more. Scott passed out five minutes after I got home since he had stayed up half the night on Monday to watch the Mavericks and LA in the playoffs. I watched a little tv and poked around the kitchen. On the counter was my 'encouragement journal' from MOPS the day before. As a surprise craft, steering committee had gifted us with a list of adjectives obtained in secret from our husbands that they and our children would use to describe us. We cut out the words and decorated the front of the journal with them. The list had overwhelmed me on Monday, the way I was seen. The words were meant to encourage us on those days that we were feeling 'less'.
I was definitely feeling 'less' yesterday. I looked at those words again and smiled. And then I cried all over again, but it wasn't the same. I wasn't sobbing in grief this time, but in gratitude and relief. Some days are so awful, but I can still find a ray of sunshine at the end of them. Scott had consulted with the boys for my words so I like looking at the list and thinking about how they see me. And since Scooter seems to be okay for now, I am going to try and focus on these things this week. I'd like to share them with you:
MOM
CARING
STRONG
SWEET
UNSELFISH
LOVING
COOL
UNDERSTANDING
WONDERFUL
Isn't that amazing? Isn't that wonderful? Isn't that just the BEST???!!!!????
The worst and the best - at the end of the day was it a bad one or a good one? The jury is still out.
Love and God Bless!
Subscribe to:
Posts (Atom)