If any of you guys who knew him personally want to forward my name to his family I will gladly share what I know, seems the least I can do. Email is fine. Your artwork is beautiful Glen but the picture for your son Ted brought tears to my eyes. After all these years your depiction of him being trapped cut me to the bone. I thought I had conquered those feelings, you are a master. I’ve kept my artwork out of this arena for my own reasons but your piece has inspired me to pick up where you left off. I’m not nearly your equal but I will do what I can.
If this post is inappropriate mods, I apologize, its who I am.
I know your fight is complete Glen, but perhaps my words to you will help educate others on this site about our sons.
Reading through the references you made to your sons condition I could tell immediately that it was autism. My son Connor showed signs when he was very young, he was diagnosed when he was 3. He just turned 9 so that makes 6 years we’ve been living with it. I know at first it can seem like a death sentence. Sometimes the doctors seem cruel, “Your child has Autism, here’s a pamphlet, see you later.” You had all these plans for your child and their future and now its all thrown up in the air.
Take heart, your child is not broken, he’s just different. There may be many things your child will have difficulties with but there will be others that he will excel in. What we have to do is raise the child we’ve been given, not the child we expected. Along the way you will learn how to deal with your childs different way of thinking, feeling, learning and you will see these abilities start to show themselves. We’ve all got things wrong with us, these kids are just a little more obvious. The way I see it, Connor doesn’t know he’s autistic. He’s just Connor and thats the way I treat him. Like a kid, not a condition.
A fathers first reaction to this situation is to “fix it”. We’re men, thats what we do. I know that all I wanted was to fix Connor. Unfortunately science and medicine have no miracle cures for us. The doctors will fail you and all you want to do is beat the ground because you feel so helpless. But eventually you realize that all we are really trying to do is make the child “normal”. Are any of us normal? Every one of us have got some kind of weirdness about us, it just seems more magnefied when its autism. The main thing to remember is that these are kids, not experiements. I’ve met many a parent that seems to spend most of their time trucking their child from one therapy session to another, signing them up for every experimental procedure or treatment under the sun. The kid needs time to be a kid. Let them be a kid and enjoy their childhood not remember all the time in a doctors office. I’m not saying don’t try therapy, if theres one thing autistic kids need its specialized training. Speech and phycial therapy are all about helping them understand how to do things that other kids pick up naturally. But people will spend years raising $50,000 for chelation therapy only to find it does nothing but destroy their childs physical health. Don’t waste their childhood on your hopes. Let them be their own kid.
The problem with most experiemental treatments is that autism is considered an umbrella condition or a spectrum disorder. Last I read the umbrella contained: PDD, severe profound, high functional, aspergers syndrom, fragile X… the list is long. I hear they want to add ADD/ADHD to it. (That would make me autistic too) These treatments may work on a few cases but because there seem to be an infinite number of causes for autism the odds of you hitting the exact right one are slim if its possible at all. The brain is one of the slowest healing parts of the body. The small gains you may see in your childs development are usually the healing process, not some miracle cure like cod liver oil or gluten free diets. What would be better for your child anyway, the inside of a doctors office or green grass and blue sky. To me a smile on Connor’s face is worth more than any so called cure.
This article is pretty close to my experiences with treatments. http://www.autism-watch.org/about/bio2.shtml
Medically, like with an actual Neurologist involved, we’ve had MRIs, EEGs, ECGs, hearing tests, brain scans you name it. It has produced nothing. They will offer you many kinds of medicine. I don’t know how you feel about drugs but I was totally against it. My Mom was a staunch opponent of psycotropic drugs so thats how I was raised. Connor responds very well to medicine so I had to relent because it helps him at school. I’m not telling you what to do here just DO YOUR RESEARCH! Many of these drugs have long term side effects and your childs reactions will be different seems like on a daily basis. Like any drug they build up immunities to the effects and they grow up so dosages have to change. Certain combinations don’t work together. One type started causing Connor to hurt little kids. You’ve got to stay in close contact with your Neurologist. I don’t like ours, I think they practice mad science because they never seem to know anything concrete. Its not their fault I’ve had to realize, no one knows enough about autism.
Be flexible, most of what you learned from your parents techniques won’t apply here. I was spanked (a lot) as a child. And for me it worked great. It doesn’t work great for Connor but thats the only thing I knew. So I had to learn other techniques for discipline, time-out actually works on this kid. I used to laugh at time-outs. Absolutely you must discipline them but as my wife says pick your battles.
Set boundaries and schedules, autistic kids seem to respond really well to set patterns and repetition. For Connor, if we say we are going somewhere we better be ready to go when we say it otherwise he gets confused as to why we aren’t leaving right then. Its summer time right now and no school really messed him up at first but he adjusted slowly.
Pay attention to your surroundings. Most autistic kids have a condition called hypersensitivity. It means there senses are way off the chart. Crowd noise, crickets chirping, traffic may be soft to most people but to an autistic kid it may sound like a jackhammer. I have this problem, some of you may too. I can hear flourescent light ballests, crt monitors, tv tubes from across the house. Large crowds can make me dizzy if I’m fatigued. At my Moms house there was this chirping noise that was driving me nuts. After a quick hunt I finally found this device plugged into the wall behind the fridge. I asked, “What is this thing!” Turns out it was an ultrasonic device to scare insects and vermin away. Guess I’m the vermin now. Remember what I said about all of us having problems, lol. The difference is I can deal with it, these kids need help to get used to it. So observe your kid in certain situations. He may cover his ears, shield his eyes. Connor covers his face when he is overstimulated in crowds mostly, thats the time for me to step in and remove him from that environment before he breaks down.
Overstimulation can cause them to go into a tailspin. Don’t crowd their rooms with every toy, poster or learning aid you’ve bought for them. Keep it simple so they have 1 toy to play with and not have to pick from an entire toy box. Otherwise you will end up with an empty toy box and a full floor every day because they can’t decide what they want to do. Rotate the items out every week or so, that way they have something new to look at but not a mass all at once.
This is not parenting for the lazy or the weak. You are now a full contact parent hehe. You need to be aware, alert and not distracted by your own agenda. Why I hardly ever finish any of the contests I start here. But I’m okay with that, my kids are much more important.
Points to remember:
There is no cure, only progress.
He is a child not an experiment.
You are a parent not a research scientist.
Be flexible because every child is different, normal or not.
I’m sorry if thats too blunt, its my real life and maybe I can help skip you ahead to the happy part of life and skip the denial, acceptance, experimental part that makes us and our kids miserable.
Autism Society - I don’t care much for it. Its an awareness organization so they like to talk without making any progress but they do have a great network of contacts from their site.
RDI - Out of everything I’ve seen, this looks the most promising. Its a new way of working with autistic kids but its not a cure or therapy for the kid. Its hands on training with a specialist that teaches the parent to work with THEIR kid not autism in general. Its not cheap but the technique makes more sense.
Ten Things Every Child with Autism Wishes You Knew - This is a must read for every parent of an autistic child. What I’ve written here is what I’ve experienced, but this book covers many of the same topics in better detail. I was turning the pages going yep yep.
Thank you for listening, I hope you learned more about this condition that affects 1 in 150 kids these days.
