Now, I’ve been posting about food and wine here. I’m sure, at this point, you think that all I do is eat, drink, and apparently weigh 300 pounds because I merely eat and drink. Not so.
I have a son. He is five, at this point. He is beautiful, with big blue eyes, sandy blond hair, a dimple in his cheek. He likes to laugh, he plays like crazy, he’s the “happy kid” (I always have people going “The Boy is so happy!”), and he’s the love of my life–in that wonderful special bond that a mother has with her children. He loves cats, dogs, t-ball, any Pixar movie, eating lots of food, and all the other sorts of things that five year olds enjoy.
He is also on the Autism Spectrum.
Autism is strange. Most people think of Rainman when they hear the word autism. I knew a touch more than most because I have a cousin who is severely autistic. I don’t see him often as he lives in the greater Chicago area but I’d hear the occasional story or see him at the occasional family event. He’s non-verbal, wild, restless but he’d burst into laughter or smile or hug my uncle from time to time. He’s the traditional image of an autistic child you see in the media: rocking, self-absorbed, effectively mute. He’s also my cousin and hard as it is to communicate with him, he has the family’s love (which in my massive family can be downright overwhelming) and has made real progress as my aunt and uncle struggle with his treatment.
If that’s all you’ve seen of autism, you relax when you see your child behaving in a typical fashion–starting to talk, walk, hug you, smile, laugh. All those things that you go “hey, autistic kids don’t do that, surely, I must have dodged the bullet.” You aren’t told, as a new parent, that there are other signs of autism (and this is only an abbreviated list, simplified because I don’t have the formal sheet in front of me at the moment): certain types of play, inappropriate laughter, speech delays, motor delays, refusals to meet the eyes of those he is talking to, fixations on either items or certain words, echolalia. These are all things you have to watch for, I was told later. Except they don’t tell you that when you’re holding your newborn or infant.
So, when The Boy was evaluated at two for speech and motor skills (and I thank god on a regular basis that the part-time daycare he was in was staffed with observant and intelligent people) and they did a conference and carefully and delicately explained that he showed signs of autism, I mentally shut down. My grandmother had died two days before and I was literally leaving the meeting to drive to her funeral. I couldn’t believe that my smiling, laughing, loving little boy was in the same class as my cousin (I was woefully uninformed in those days) and I refused to take their observations seriously. They didn’t know my son. They were wrong.
The results were enough to get The Boy into the special education preschool at my local school system (at the time, I was living in Southeast Michigan). I still miss those teachers–he had the same teacher, aide, speech therapist and occupational therapist for two years and with their guidance, The Boy made fantastic strides. And he loved being in school, trotting off with his backpack bouncing on his back and a big smile on his face.
But I wouldn’t acknowledge that it was anything but simple delays. And part of this comes from the difficulty of diagnosing high-functioning autism. The spectrum is so vague, so wide, that plenty of kids would seem to be on it at a young age. Our pediatricians and school officials were all cautious and said over and over “give him time, give him time”. I was happy to take that recommendation because the alternative was terrifying.
He has gotten better. Huge strides have been made in his speech, though he still doesn’t communicate very much and is rather self-absorbed. His physical skills are much better: he cuts well, he writes well for a child his age, his drawings of people have made real progress, he can climb like a little monkey. He’s funny, he’s loving, and despite his inability to communicate well at times, other kids like him and invite him to play.
But he is still on the spectrum, somewhere. I’ve finally come to terms with this, in my heart and mind. I can imagine some people judging me, right now, right here. Sure, I suppose, it could be deserved. But when you have supposed experts in your life saying, “Just wait, just wait” over and over, it’s easy to pull some reassurance from it. It’s easy to just assume that it’s merely a delay and he’ll get over it–half the people are telling you that, after all. But you can’t know the terror of having your child diagnosed with something out of the ordinary, something that will affect him his whole life and could keep him separate from society in some way his entire life. You can’t know that till it happens to you or someone incredibly close to you. I certainly had no idea. Frankly, I hope most readers out there never ever have to experience it.
But it isn’t that simple and that’s a cowards way out so I’m finally doing the right thing. Our insurance covers a visit to The Kennedy-Krieger Institute, one of the premier institutes in the country for diagnosing and treating the autism spectrum. I feel confident that we will find more ways to help The Boy progress toward kindergarten.
It is a lonely feeling, however, having a special-needs child. Most people don’t understand your world and either pity you or avoid you for fear that their own child will be “affected” or “infected” or some sort of trashy nonsense. I sometimes lay in my bed at night and rip myself to shreds, blaming all of this on me: something I did, something I ate, some defect in my genes, something in what I didn’t do for him. It is easier to be rational in the light of day but in the dark of night, the heart takes over from the head and it isn’t usually pleasant.
I don’t know. I suppose like everything else in my life, this will be ongoing. I have my son and he’s perfect to me. Sometimes he makes me mad, frustrated, or sad. Sometimes, I feel like my heart will explode because of how much I love him. Either way, he’s mine and we’re together, us against the world. For good or bad, I can’t imagine this any other way. I suppose that’s the funny thing about life, hm?
