Yesterday, Ryan was officially diagnosed with autism.
I began to see a lot of signs last fall: poor eye contact, clumsiness, no attempt at communication, being with us but not with us, staring off into space, a lot of repetitive behavior including walking and wandering in circles, and head banging. The aimless wandering progressively got worse, as did the head banging. At his worst, Ryan would head bang for an hour or more before falling asleep at night. Many times he didn't nap during the day: the entire duration of his nap would be spent slamming his head against the wall. He put cracks in the wall behind his bedroom door, an actual hole in the wall that his bed is against, and worse yet, developed a large bald spot on the back of his head (covered with careful hair cuts that require clever layering), and a fluid filled lump on his spine that has caused a callous to form on his back. With the exception of the head banging, I saw a lot of my youngest brother in Ryan. My brother was -- and still is -- a chronic rocker. Rocking chairs and recliners are his favorite places to rock himself to oblivion in.
In January, Ryan was evaluated to determine what exactly was going on, and what services would be needed. The evaluation lasted over four hours, and the results were that he scored extremely low on social emotional and communication, low on cognition, borderline low on adaptive, and below average on physical.
Since January, Ryan has had about three hours of services each week: a special instructor works with us on Mondays, and an occupational therapist works with us on Tuesdays. The past five months have been spent working with Ryan and trying to get him to find better ways to comfort and stimulate himself, getting him to play more, socialize more, look at us and listen to us.
There have been some improvements. He's no longer rocking for hours during the day and for hours at night. At night, he does still rock, but most of the time it's as little as fiften to twenty minutes before he's out. He is making more eye contact. He is actually playing a little bit, rather than sitting on the sidelines, watching rather than participating.
It's upsetting to know that Ryan is autistic. Knowing that he had a lot of delays and that there was a possibility of him being on the autistic spectrum was one thing, but actually
knowing
he is autistic is quite another. We have made a lot of progress in the past five months, but there's still so much to do. He's going to be two in a month, and he doesn't talk. He understands a handful of simple, one and two word commands and requests (cup, eat, diaper, no, come here, go bye-bye, let's go), but doesn't communicate with us, aside from throwing temper tantrums and screeching in frustration because he can't talk to us and let us know what he wants.
Each day is an exhausting guessing game of figuring out his wants and needs, directing him into specific activities, doing my best to communicate with him, and encouraging him to play with his toys and play with Alyssa, rather than wandering around aimlessly, getting immersed in repetitive behaviors (opening and shutting the fridge, cabinets, drawers, doors, washer and dryer, bathroom cabinets, toilet lids, cat litter box lid, etc.) and staring off into space while walking around or rocking against the couch.
We have changed our lives around and our everyday routines to accommodate Ryan's needs. We didn't take him to the zoo because Ryan has to be in constant motion. Rocking, swinging, moving. If we're at a red light for more than five seconds, the rocking starts. If he's in a shopping cart or in the stroller and I pause to look at something, check my shopping list, check out at the register, etc., he starts to flip out. He can't handle a lot of visual or audio stimulation: he freaked out at the pool last Friday, because of all of the people and noise, and retreated to a back corner of the fenced in pool and surrounding area, where it was shady, quiet and isolated.
After we left the autism center yesterday (wonderful place, btw: they have specialists and doctors and psychologists and psychiatrists on staff, and we have lots of info to look over, and phone calls to make regarding setting up additional occupational therapy and speech therapy), we stopped at Perkin's for lunch (speaking of restaurants, a few times now we've had to leave restaurants because there's no way Ryan could handle the fifteen - thirty minute wait for a table without breaking down). After we had ordered, gotten our food and were starting to eat, and Ryan was gazing out the window at the passing cars, Dan started reading some of the paperwork the autism center gave us.
All along Dan has been vehemently denying that there was anything more going on with Ryan then a few minor delays. I've been able to see the writing on the wall since last fall. Time and again I see so many significant similarities between Ryan and my youngest brother, who is more the classic autistic child, and seeing how the therapists worked with him, and the way they have been talking to us during these last few months.
All along, Dan has had the hope that Ryan would catch up, there would be no more delays, he would be perfectly normal, and off we'd go. I admit to wishing for the same, but deep down I knew that these weren't just "delays" that we we would work through, get the kinks out.
Hearing it from the staff and seeing it on paper was a little much for him. In the restaurant he started talking to me about why he's so upset and worried about Ryan being autistic. It isn't so much having an autistic child, or even the rough road ahead of us and how our lives will definitely be different from the lives of parents of "normal" children. It's the social stigma attached to autistic children. He is really worried about how schools, teachers and other kids will treat Ryan because he's autistic. He was looking at Ryan when he told me this, and his eyes were glistening, and his voice sounded tight, choked up. I broke down and cried there in the restaurant, for Dan and the obvious heartbreak and pain he was experiencing, and for Ryan. Poor Ryan. My sweet, lovely, adorable baby boy. He's so happy. I hope that we can help him and do whatever we can to ensure that he is a happy child that can do anything he wants to, and that he isn't held back by his autism, or by the opinions and judgments of others.
So what's next? Well, we'll continue to have the therapists come and work with him each week. We're meeting with a psychologist next Tuesday afternoon to discuss "what's next". I know that one big focus is communication and speech: Ryan is so frustrated by not being able to speak, so we're all going to come together and do what we can to help him. We love our baby boy, and we'll do whatever it takes.
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