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