Not too long ago, we (my husband and I) posted on our facebook pages that troubleface #2 – Andreas the Amazing, has been provisionally diagnosed as having Autism Spectrum Disorder – “ASD”. I promised to write something explaining where we’re at with this and how we got here. This is the something I’m writing. I hope it answers the questions we’ve been getting and I hope it maybe answers some questions that nobody has thought to ask – yet.
First, the “provisional” part of it is because we are mid-assessment with the Early Child Development Clinic (ECDC) at the Children’s Hospital, and well, mid-assessment they realized we can’t wait for the final word from the psychologist before moving forward with getting our boy some extra help when he transitions to kindergarten next week. After the psychologist does her assessment we will no longer have a provisional diagnoses – it’ll either be confirmed and final, or something else, or a combination of something elses. At this point it is ASD unless proven otherwise. I think there was some confusion with the whole provisional diagnoses business and what it means. It does not mean they are giving him a label to force the school system to give him extra support in the classroom. It means they are giving him the label that fits best based on what we know right now, in order to get him the help he needs until we get our final answer.
I want to make it clear that I am not suffering from any kind of ‘special snowflake syndrome.’ My kids are special to me, and Andreas may have some special needs, but there are plenty of kids facing challenges that don’t qualify them for any kind of special funding who adapt and grow into phenomenal adults. There are many children in our schools who would benefit from extra support in their learning who are not getting it. There is only so much funding and only so much a school can do. I don’t exactly know how it all works but I do know that whether or not Andreas is able to be approved for the specific kind of funding and support that the ECDC is pushing for, I will be able to rest easy knowing that we tried. And I will rest in the knowledge that all of these assessments are helping us and others understand him, for his sake and our own.
Now, the details.
What was so concerning to the ECDC? A lot of things.
He is so far behind in fine motor development that I feel tremendous guilt for not knowing sooner. He’s adapted to doing things his own way so it didn’t stick out to us as being as much of a delay as it has turned out to be. He tested at a 9 month old level in his grasp, and a 2.5 year old level for visual motor integration. This is what they call a “profound delay.”
His language skills test average for his age, but the problem is his inability to use language appropriately. The way they put it reads, “Andreas’ functional communication and his social pragmatic skills were considered to be moderately delayed in spite of his assessed language skills meeting age appropriate criteria.” The way I put it is that he is socially awkward. The way another kid put it recently was, “you’re kind of weird.” To which Andreas responded, “I know.” What we tell people is that he is our mini-Sheldon, as in Sheldon from Big Bang Theory.
At play he treats other children as if they are pawns in whatever game he is trying to play. Everything has a specific way it is supposed to be done and deviation from whatever way that is, frustrates him. It seems to me that he feels like everybody is just doing everything wrong. He gets worked up in a real hurry, in good ways and not so good ways. Self-regulation is something we work on at all waking hours of the day. Social skills are things we practice everywhere we go. He had a melt down in the mall the other day because the sales person said hi to him. I found him underneath a clothing rack upset and repeating, “I just don’t want anybody looking at me.” How do I parent that? By respecting his emotional needs in those moments. It’s that simple. He is genuinely upset, even if his reason for being upset makes no sense to me or even seems invalid. Sometimes, yes, it’s too bad. He wanted to leave the store altogether and I made him hold my hand, close his eyes and wait until I was done. It was hard for him but he lived. I lived. Whatever. Today we went to the park with a large group of people and he was fine. There are good days and bad ones.
The major thing that set off the alarm bells during his assessments so far is what they are calling his sensory function. The boy hears everything louder, smells everything stronger, sees everything brighter, feels everything harder and has such a hard time with taste that he only eats specific foods in specific ways. And having too much sensory stimuli going on at once shuts him down completely. On the internet they call it Sensory Processing Disorder. There is a book titled, The Out of Sync Child, that explains this piece of the puzzle perfectly. The assessment for Andreas in this area reads, “none of his sensory processing systems are correctly receiving, processing or integrating the sensory information they obtain from the environment and as a result he is unable to make correct or appropriate social/emotional or motor responses to it. In addition Andreas is not successfully controlling or regulating/modulating the quantity, quality or intensity of the sensory information he receives from the environment. Andreas was also identified as being emotionally reactive and as having a higher than typical level of inattention/distractibility. Deficits in these areas have profound implications for Andreas’ successful functioning across all environments without consistent and intensive 1:1 adult assistance.”
I’m so hyper aware of the kind of assistance Andreas needs that I do it in my sleep. I don’t notice how much coaching I do until someone else points it out. And let me make it perfectly clear that this is not just some fancy way of saying the kid has a behavior problem. I’ve seen plenty of kids with behavior problems. My own included. Shutting all the curtains because the snow falling outside is too loud, is so far past the realm of “behavior” that I am not even going there. Today anyway. My 2 year old is an ongoing behavior problem. Andreas is really struggling. We discipline him of course, because all kids have behavior stuff that needs to be corrected. But you can’t simply discipline a kid out of hearing and seeing snow falling too loud. You have to teach him to adapt, to cope and overcome it.
Will he get an aide or other support at school? Who knows. I don’t know. I’m certain he will have a successful year no matter what. If he comes out of kindergarten knowing how to sit politely during carpet time without interrupting, without moving around like his pants are on fire, without distracting himself or other kids and also having paid enough attention to learn something – that will be a really great year. If he comes out of kindergarten with friends who he plays with reciprocally that’ll be a stupendous year. If he can take what he is told during carpet time and follow through on the task at the table without coaching, that’ll be an outstanding year. I’m not worried about ABC’s – he’s known those since he was 19 months old. He can count and is learning to read. He has a great memory. I’m worried about him taking all the things he knows and using them in some meaningful way for himself and the world around him.
I’m a tiny bit worried he’s going to give his teacher some grey hair but she’s faced tougher challenges in her classroom and come out better for it.
On Saturday night we went to a birthday party at Gymtastics. The birthday “coach” led the children through the various apparatus in the gym, giving them each turns to learn how to use the equipment safely. It was a very cool birthday party. Andreas thought it was pretty cool but he wasn’t interested in the group of kids or the coach. She told him, “Andreas if you want to play with the big kids you have to follow my rules.”
Andreas replied, “well I guess I will go follow my own rules.” Not in a rude way. Not in defiance. Just as a matter of fact. I hope someday he tells people that it’s not some diagnosis or disorder that makes him the way he is – he just has his own set of rules. Of course. (He always says of course, as if everything he tells you is so obvious and true you’d be stupid not to see it his way.)
But in the meantime he’s got to get through kindergarten.
And so we will keep pushing and fighting and banging down the doors to do what we can for him in the here and now. One thing is for absolutely certain though. The boy is not crazy. His mother had him tested.
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