When I began the adventure of raising my son, I couldn’t believe how hard it was. Nothing I said got through to him. He didn’t seem to be interested in what was around him, unless it upset him- and then he screamed. There was this lack of curiosity that was puzzling. I knew when my boy was born that he would be legally blind because of an inherited condition in his family tree. A lot of these things that made raising him so hard I chalked up to the difficulty of raising a boy that was legally blind.
As time went on though, it became more obviously something else. The ominous A-word began to float around in our discussions of his progress. He didn’t seem to learn how to do many things, and even more disturbing was that that didn’t seem to bother him much unless it meant some direct physical discomfort. He wouldn’t ride a scooter. He tried, failed and abandoned it. He didn’t struggle to learn anything. For many months, we all told ourselves that this was tied to his near-blindness. That began to fade when we saw him climbing six foot ladders at the playground and walking across the room when he spotted a sippy cup of juice.
There were obvious indications of his poor vision, though. He held things very close to his face to look at them and he watched TV so close up he would get spit on the screen. I would cling to those signs of his blindness for months as the explanation for why he didn’t talk or really play with me, and why he seemed oblivious to what I said. All that time though, the spectre of autism lurked on the periphery of our relationship. I stayed home with him, and as the months wore on I could almost see it flitting around his room like a Ringwraith or a Dementor. An uneasiness stalked me that would not go away.
The longer he went on without talking, the stranger it seemed. The other oddities began to bother me more. He didn’t want to play with me. He was constantly twitching and shaking his head and jumping in place, as though he were trying to jiggle something loose in his head. These bothered me more and more, but as the months went by and he was getting close to two years old without speaking or even responding to sign language I held out hope he’d snap out of it. There was one thing that constantly haunted me. My son would not respond to his name. For weeks and weeks I tried to see if he’d turn when I yelled it. He rarely did, and most of the time it was for some other reason.
Autism is a lot of things, but the one aspect of it that has made life the most difficult in my brief time around the condition has been the asocial tendency of many autistic people. My son has asocial tendencies, albeit far less severe than many other less fortunate autistic kids- and his social interest has improved with therapy. He began ABA therapy 6 months ago, and the difference has been nothing short of remarkable.
Still, I sometimes I feel like I’m talking to a wall. I never know how much he understands and he often has a faraway look in his eye. On some days he has a catlike indifference to affection and praise, on others he’s quite sweet. Sometimes he laughs out of nowhere at a joke only he will ever understand. I have a short fuse, and I have often have to pause and take some deep breaths to avoid yelling at him for climbing on something or jumping on the bed for the millionth time that day. Sometimes I fail, and yell. It upsets me, he seems to take it in stride. It’s sort of creepy to see a kid so indifferent- he seems almost jaded. At times I love that about him. Often, it makes me sad.
Raising my son felt like that anxiety dream you have where suddenly discover you have a final for a class you didn’t do any reading for. It is that way for all parents, but how can you get your bearings as a father if your son sometimes doesn’t even acknowledge you? My boy often has very little need for my approval. It was worse early on -he would smile when I clapped for him sometimes, but more often would just go about his business. He seemed unable to understand that people are different from plants or furniture. Often, he would use me as a sort of crude tool. He would take me by the hand and place it on a door or a cabinet. When I opened it, I was dismissed, having served my only function. He pushed people to different parts of the room if like he’s rearranging the furniture. It’s changing, and it isn’t always the case, but often, my son seems to think of the world as a giant living room full of mannequins or dolls that yammer indistincly like the parents on Peanuts. A lot of the time, I’m just one of those dummies.
As I said, a lot of this has changed after 6 months of ABA therapy. My son is more social and more affectionate. He’s more patient, he’s less volatile, and he’s making efforts to communicate in ways I thought were impossible just months ago. Autism isn’t curable – at least I don’t believe it is, but it is treatable. It all boils down to developing the social instinct most people have innately. With therapy, my son has developed the ability to form bonds that other people have right away. After six months of therapy, I never doubt that my son loves me. Never.
Until now, he never thought there was a reason to let me know he loved me. He assumed I knew, just as he assumes I know that he’s crying because his juice isn’t cold enough without saying a word to me. My son can’t link his feelings to expressions, because he can’t link other people to information very well. This is something you can learn. My boy is slowly but surely developing the ability to show me he loves me.
His love is a weird kind. He’s sort of like an old- school Dad. He’s aloof, stingy with affection, demanding, and critical. He gets uncomfortable when he’s doted on or fussed over. Often, I feel like going near him when Sesame Street is on is like approaching Archie Bunker when he’s reading a paper in his armchair. It’s hard to know what to do with such a worldly toddler. The role reversal is just bizarre.
Like a grouchy Dad who can’t emote, my son has moments where he is extremely cuddly and affectionate. Those moments are heart-stopping and powerful, if only because they are rarer than they are with most kids. We’re teaching him to show his feelings, to come out of his shell, to be comfortable with being loved. Those moments of connection are happening much, much more and I’m grateful for every one of them. This slow, arduous process of building a bond with an autistic child is teaching them how to show the love all kids have for their parents.
When I imagined what being a Dad would be like, I had images of heart-to-heart talks, showing him Star Wars for the first time, athletic failures (or who knows- successes), showing him how to ride a bike, taking him to a Yankees game, teaching him the difference between good rap and crappy rap, how to swim, how to read, how to discern right and wrong- the kinds of things everyone looks forward to when they find out they’re going to be a parent. Most parents have relationships with their kids that have those kinds of sentimental moments they’ll always cherish. Those memories are vital, but they aren’t the whole point.
My son and I haven’t had many of those moments. His first Halloween was kind of an ordeal. When I brought him outside to play in the snow for the first time, he totally freaked out. His first class pictures feature him on the edge of tears or with a kind of glazed expression. My son and I have a different set of memories. A lot of them involve hard work and struggling. There’s a lot of crying and tantrumming and me fumbling ineptly at the job of consoling him, or trying in vain to interest him in some toy or another. The thing is, my son has made progress. All the hard work we’ve done together, all those heartbreaking failed “firsts”, have united us in a way few parents can be with their kids.
Raising a child isn’t actually what I thought it was. Being a parent is working as hard as you can to teach your kid what they need to know to be grown-ups. You work and worry and sweat to put yourself out of the job of “parent”. A father or mother is charged with the gut-wrenching job of raising someone who will grow up to be an adult and an individual who will walk away from you. Your kids will come to reject a lot of your values, they will move on to their own lives. As your son or daughter becomes a man or woman, you become less and less a part of their lives, but they’ll still be the most important thing in the world to you. That is really what raising a child is about.
My son has taught me that I have to accept him as he is, and that the Hallmark moments I grew up thinking were what child-rearing involved have nothing to with love, or family, or being a father. Being a father means building someone up, slowly but surely. My relationship with my son has been about that and little else. The temptation to view that as some sort of tragedy is what makes it hard. When I see my son as he is now, when I see how hard he works and how much I’ve been able to help him, I don’t care that he didn’t love his first Halloween. I look back on the moments when he looked up and smiled at me or when he does something small that he’s struggled with for months with the same nostalgic affection most people have for their kid’s first day of school.
Raising an autistic child is by necessity stripped of sentimentality and nostalgia. The ornaments and frills of parenting are harmful and not helpful. As he learns to show love, we go through arduous drills of repetition and reward. My son and I live wholly in the present. The business of making a boy I’ll be proud of one day is totally superceded by the needs of the moment.My relationship with my son has a Bauhaus design- it is purposeful and functional. It is a love that is raw and exposed fro what it is. The dynamics of attachment and release that child-rearing truly is- the selfless love of both child and parent are right there in the forefront with my son. Like Bauhaus, my son and I have a relationship that looks severe, sterile, and mercenary to those who are outside the process of making it. Like Bauhaus, the raw functionality of our love for one another creates a lucid reality and a pure love that us unlike any other kind of relationship. We understand it and we can recognize it for what it is- the love of a family.
This blog is an effort to show you what parenting that puts function before form is truly like. It is wonderful. I love Bauhaus parenting.