John Z is 28, and wrote this a year ago. He’s married to Sarah, with three kids at time of writing; Harry (4.5) Charlie (2) & Ruth (3mths). He has Asperger’s syndrome and prefers to share this sort of thing pseudonymously. He was very angry when he wrote this.
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My firstborn son Harry was diagnosed with moderate-to-severe Autism Spectrum Disorder (ASD) when he was two. It has changed my life and the life of my family immensely. He is now four-and-a-half.
The worst thing about having a child with ASD is the guilt that comes as a father, as the family provider. There are programs and treatments out there that have been proven to alleviate the worst aspects of the condition. Trouble is they cost scores of thousands of dollars each year. How’s that for a guilt-trip? You could fix your son if you earned more money. You could save your wife the heartache and tears and stress and the shame, if only you earned more money.
Not that he’s broken. You can’t ‘fix’ ASD. What you can do is help people to fit in with mainstream society more easily, to the point where they can live independently and hold a job. And not that he is the only member of the family. I have a wife and two other children who need my attention and love just as much. I have things I need to do for my own physical and mental health. So it’s the biblical two-edged sword. No matter what I do, I am failing someone.
The second worst thing is just how alone you feel as a parent. You can’t really talk about it with other people.
How do you tell someone how proud you were when your son said ‘good night dad’ unprompted for the first time when most kids his age are ready to go to school and sit in a class with a bunch of other kids for six hours? How do you explain that while you use laughter and humour to cope with your son’s quirks, you want to curbstomp the next idiot who laughs at him eating grass or stuffing his mouth full of chalk or taking off his clothes as he runs about the house moaning?
How do you explain the bittersweet emotion of watching your two-year old overtake your four-year old? Everyday Charlie does new things, neurotypical things. He talks, he asks questions, he shows off, he lies, he plays with other people, he takes turns, he watches a movie from start to finish. Harry doesn’t do these things. At the same time you feel proud for Charlie and sad for Harry, when Charlie doing something new shouldn’t be sad at all. You shouldn’t feel sad watching your son dribble and pass a soccer ball with other kids. But I do.
People don’t understand how draining it is to live with, every hour of every day. We put on a brave face because condescending looks and invasive and gossipy questions just make it worse. I try to remember what I thought of special-needs families before we found out about Harry. As far as I can tell, it didn’t take up any of my mental RAM at all, even though I knew several such families. If I thought about it at all, I would think a) sucks for them and b) glad it’s not me. But otherwise, I was always more concerned with my own problems, when to look back, I had no problems at all.
You can’t ask for help because only a handful of people (and I mean, two or three tops) can look after Harry for more than a couple of hours. Whether it is because people don’t realise you can’t let him out of your sight, or that he is stressed by them, or because we just don’t feel comfortable letting him go, the result is the same. People don’t understand the level of trust we need to have in someone before we can leave him with them. One bad experience can scar him and turn him off something forever. It might be inadvertent, but we can’t afford for Harry to develop any more complexes than he already has. Harry used to let me change his nappy, but now Sarah is the only one allowed to do it. I don’t know what I did, but something happened and now Sarah has to pay for it. So don’t think we’re not taking advantage of the offers of help because the situation’s really not that bad. We’re not taking advantage of them because it’s worse.
Another thing I love are the ASD experts. They might have seen Rainman, or read a book with a character with ASD. Or maybe they watched a TV documentary. But whatever it is, they ‘get’ ASD.
Every kid with ASD is a secret genius. Truth is, most children on the spectrum have an intellectual disability. Chances are, there is no ‘silver lining’ to ASD (ie, he’s a little odd to talk to but he’s really good at maths). Chances are a child with ASD will struggle with everything.
Here is an article I read in the weekend paper about parents who sold their house and quit their jobs and spend all day running therapies for their only child! And look how well he’s doing! Well fuck. If only we had a house to sell. If only I could afford to retire at 27 and still pay the ~$20-$40k a year for therapies. Why the FUCK would you point that out to someone?
ASD isn’t such a big deal. All kids need watching, and all kids throw tantrums, have difficulty sharing, and so on. Fuck them and if you think that then fuck you too.
Ridiculous offhand comment about vaccines. This is about the only topic that I am unable to argue over without getting blood-boilingly mad. We need more people to understand the science behind Autism, not to turn it into some pseudo-scientific plague that big pharma has unleashed on us. Fuck. It’s making me angry just typing this.
He’ll grow out of it. He won’t. Harry will always have ASD, and it won’t get any better. He’ll just get better at hiding it. It breaks my heart that he has to modify his behavior so much. He has to work so hard just to be normal. He shouldn’t have to. I did, and it was one of the worst things ever. I used to stim by running around a rubbish heap out the back of mum and dad’s for hours and hours. I stopped when I finished homeschooling and went to a mainstream school at about 16. In a couple of years I put on a lot of weight and lost the ability to focus on something for any real length of time. I used to be able to read dictionaries for hours straight. Now writing a short assignment on a topic I know back-to-front is a task. I was able to coast through high school and college on the work I had done homeschooling, but I’m only just getting back into the game as I realise it’s OK for me to do things differently. I don’t have to work and study the way other people do.
The people who raise eyebrows at the level of government assistance we get. This is just so petty and small-minded I don’t know what the fuck. Harry is not our fault. He’s nobody’s fault. The therapy sessions he is getting now might mean the difference between him spending a lifetime in intensive care, with Sarah and I scraping along on the disability support pension and his being able to live in a flat attached to our house. Or being able to hold a job. Or Lord-willing being able to live on his own and get married and have a family of his own. $10 spent on him now can save $1000 later. It is really a no-brainer from a government position, and making us feel like dole-bludgers is just…
The stress of not being able to leave him unattended even for a minute is enormous. I have to get up when he does. Harry only needs a minute alone to scatter rice all over the kitchen floor, to get the carving knife out of the chopping block, to climb into Ruth’s cradle for a cuddle/smother. It’s worse for Sarah. When she is in the house, she is the only person allowed to change his nappy, to strap him in his car seat, to get him out of the bath, to change his clothes, to feed him. As if she didn’t have enough to do already.
You know how when kids are little, you can’t trust them with anything? But they grow up and by the time they are able to do things (ie, climb up on kitchen benches, navigate the computer’s hard drive, unlock front door, get sleeping 3-month-old out of her playpen etc) you can trust them usually not to do any serious damage. Not with Harry. He has the physical abilities and coordination of a 5/6-year-old and the careless and destructive nature of a 2-year-old. And there is no end in sight. He is fast, silent, curious and has no common sense or fear. We laugh about it, but I’m terrified he’ll kill Ruth or himself.
You invest a lot of emotional energy into your first son, especially if he’s your eldest. He’s the one who would inherit the farm. You wonder what he’ll do in life. Doctor, Prime Minister, run his own business? Will he have a large family or a small one? Will he like going on hunting trips and bike rides and playing StarCraft with his old man? Now I’m just hoping he’ll make it to adulthood without wandering off and drowning in a creek.
But it’s not just my kids I had plans for. My wife and I married young. She was pregnant with Harry before I graduated uni. We never were able to travel and just spend time and money on us. I made a promise to myself that one day I’ll take Sarah to France, one day I’ll go to Machu Picchu, one day we’ll see the Voortrekker Monument. We had our family early, and we were looking at the kids being (more-or-less) independent by the time Sarah and I were in our early 40’s. But of course now, I don’t know if we’ll ever be able to do that. The large majority of people with ASD live with their parents their entire lives. We most likely will not be able to leave Harry on his own while we set off for a month, or even a week. We will be tied to his routine for the rest of our lives.
The majority of parents with a child with ASD divorce. The large majority. I don’t think we will, but it’s another thing just sitting in the background, nodding knowingly, watching every argument we have. We might have gone into the marriage with every intention of staying together forever, but sometimes it just seems like a matter of time before we can’t handle our family any more. But I’m not worried Sarah will divorce me. She wouldn’t. I’m worried she will kill herself. I’m worried she’ll have a massive depression that will cripple her for life. I’m just worried.
Of course I love my son. He’s my son. But it’s more than that. I like him. He has great taste. Avatar: The Last Airbender is his favourite show, he loves Star Wars, and refuses to wear anything other than Dunlop Volleys. He makes me laugh and constantly surprises me with the things he manages to figure out on his own. He does his own thing, and is the least co-dependent person imaginable. His happiness has absolutely nothing to do with the approval of others. He never shows off, or sulks, or acts up to get attention. He has no agenda. He can’t lie. In a world dominated and swamped by people who pose and speak with a forked tongue Harry is such a refreshment.
I thank God that he seems happy, and that, given the chance to follow his routine, he enjoys himself. Many kids with ASD are stressed and miserable most of the day, and it is such a blessing that he is not.
But it’s still hard and I can’t talk about it with anyone.
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