On Laughter and Sadness, Relief and Distress

Autism_Awareness_by_thisfleshavenged

They called. After being on a waiting list since September of 2011, they called and we started the process to finally find out what is going on with Evan. It started with an appointment with a developmental pediatrician. A very long appointment. And it was so frustrating that I ended up sobbing for the second half of the 4-hour interview. How do you replay every little issue a child has had since birth, through age 11, into one appointment? And of course I totally had unrealistic expectations for the appointment. I knew how the process would work way in advance, that this was just the start, but still—maybe it is the mom in me—I clung to this appointment like our lives depended on it. It was my lifeline.

Because Evan has gotten worse. He seems to be deteriorating before our eyes. In truth, the differences between him and his peers is probably just becoming more noticeable with age. But still, this is how it seems from so…up close.

So the doc did his job. He gave me some assessments to complete. Written ones. One for ADHD and another for autism spectrum disorders, which confirmed my gut feelings all along. He doesn’t just have ADHD. There is more going on. Simple as that. But what? Turns out that Evan met as much criteria for an ASD as he did for ADHD. So referrals were made and appointments were scheduled. Speech, OT, psych, IQ evaluations over the coming months. Today…Well, today was Day 1. But first some background information.

Since we have suspected Asperger’s for Evan for some time now, I have really been paying attention. And suddenly, as we are meeting with and speaking with these experts at a major pediatric research institution, and they are asking questions about Evan. About early childhood, how he has developed, how the problems have surfaced. And everything…everything…is making sense. How, when he was little, Evan would flip over toy cars and trucks and just play with the wheels. As he got older, he did the same with his tricycle, bike….How Evan never could sleep well. I remember one time in particular that John and I had not slept in over a week, and we were so sickly-looking that Ev’s pediatrician gave him a powerful sedative for 2 nights, giving us orders to give it to him at bedtime and we were to go to sleep. All of his independence. I thought he was just really smart, and he is, but the independence at such a young age…He still has trouble with his shoelaces, yet he has been able to operate a computer since he was 3. And then there is the freak-out we get when he is tickled, played with. We found out yesterday that he feels like he has to have his feet on the ground. And he likes deep pressure. Thus the embarrassing resurrection of the outgrown clothes that are waaaaaay too small.

So his first day of evaluations came. First, the ADOS, or Autism Diagnostic Observation Schedule. A speech-language pathologist did this with him. It was 3.5 hours long, and I had no participation other than to sit in a separate room and watch on a video monitor with a set of headphones. It was so surreal to watch my baby, and while we have witnessed his behavior first-hand, there are just some things you block out. Watching him on that screen, I was able to see him how an uninterested third party might. And I saw.

I saw the little boy who barely made eye contact. I saw the mix-up of literal and implied meanings—I didn’t even realize he did this. I saw the kid who, despite a huge vocabulary and intellect to match, could not keep basic emotions separate. And then the part that literally left me gasping like the wind had been knocked out of me: she was talking to him about friends. Well, even though I hate it, I know Evan has no friends. So I am saddened to hear him describe his classmates. First the girls, then when the therapist asked him if he has any who are boys, he started to name the boys in his class. She asked him to describe the difference between classmates and friends and he could not. She asked him what made these boys his friends and he named one boy in his class and said he is his friend because he doesn’t bully him as much as the other boys. And the blood rushed to my head. My ears began to hum and tears stung my eyes. This. This is the part that hurts so badly.

So on we went. Next eval was occupational therapy. The therapist didn’t know what he was being evaluated for in order to keep an unbiased opinion. And after reading his history, she asked me about Asperger’s. And after telling her I didn’t think she would find anything other than handwriting and a couple of other fine motor issues, I was stunned. He has no coordination. He couldn’t catch or toss a ball with any accuracy whatsoever, had very little by way of dexterity, and after assessment, seems to have major sensory issues, She gave him some stiff putty to play with and he came alive, kneading it and working it with his fingers the entire time. She gave him an exercise ball to bounce on and for the first time in a long time, he looked content. He looked happy. Animated. He looked relieved.

I have been both amazed and, well, wrecked a little if I am being honest. Every little question, every little nagging thought you have as a mother…knowing something is not right, but nor being able to point it out specifically. Well, over a decade’s worth of that is coming to a conclusion, so it is like a weight has been lifted. And then there is the knowledge: will he ever have friends who appreciate all of the amazing gifts he has? Will he have a date to the prom? Goals for his future? Can we overcome this, too?

Today, I got info in the mail to get him registered with the Autism Treatment Network. That one killed a little bit. I carefully filled in his name, his city and date of birth underneath the letterhead with the dreaded A-word that can invoke terror in the hear of any parent. And I thought back to the day he was born. The hopes we have held just for him. The memories of smiles and laughter, of amazement at his ability. And I knew, suddenly. Just like that, I knew that, just like when he was a baby and we helped him through colic or reflux, or formula intolerances, just like I helped him when he had an ear infection or a scraped knee. I will help him through this. I will champion for him. He is my baby. He is still perfect.

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