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!
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