Not really anything to do with Autism but I thought this was hilarious… and you know, it’s funny… cause it’s true!
Not really anything to do with Autism but I thought this was hilarious… and you know, it’s funny… cause it’s true!
So I wrote about how humbling it was to visit a place like Sick Kids Hospital, to see all the children truly suffering and even dying, but I didn’t feel it warranted writing about my own experience at the same time as it distracted from the message, so here it is now.
My wife, Cameron and I arrived at the hospital around 8:40am in anticipation of our 9:30am appointment and was immediately warmly greeted by nurses and given a lot of video games and toys to occupy our times with. First we headed off to the cafeteria for a warm bacon and egg breakfast since we had a little time.
We were called in right away to have Cameron weighed, measured and pressure taken… however, due to his diet rendering him so skinny and his squirmy behaviour, they never did get his blood pressure. Their digital devices simply couldn’t get an accurate reading but he did great with standing on the scale and against the wall.
After a short period we found ourselves in the little doctor’s room where they put 4 drops on his arm and then punctured the skin a bit… at this point, I think Cameron had more of an issue with his arm being held and something being done to him that he didn’t understand than he did with any actual pain. He complained quite vocally but then calmed down just as quickly once it was over.
We had to wait a short while for any reaction, none came. So back came the doctor and this time, with needles. The doctor even told me that they were really quite painful… not at all like when you simply have blood drawn.
This time, Cameron let out some screams that likely scared the bejeebies out of any other children still in the waiting room. However, that being said, he never once tried to pull his arm away… never once tried to get away at all. Despite the overwhelming pain and his arm being held against his will and his obvious distress… he did what was asked of him. Cameron sat on his mother’s lap who held him, comforted him and most of all, was the one to keep his arm where the doctor could do his work… if they hadn’t allowed her to be the one to hold him, it could have gone a lot worse. He demonstrated a truly a brave character trait that I can be quite proud of… but not only me…
The doctor was apparently impressed with him as well because he left for a bit and then came back with a brand new book that he got to keep. It was a cute little animal puzzle book which Cameron loved quite a bit… and immediately got to work on. However, when my wife asked him “Do you want to take this book home or leave it here for other boys and girls to play with while they wait?” he quickly replied that he wanted to leave it for other boys and girls. Again, another great character trait.
The doctor checked his arm out and found no allergic reaction so we were onto the 3rd and final test, the actual medicine portion… he had to take a dose of penicillin and see what happens. Again, he wasn’t happy but he did as told.
The doctor heard how Cameron liked the book but wanted the other children to enjoy it and so he returned again shortly later and this time with a dvd! He gave my son the “Arthur and the Invisibles” DVD, still wrapped in plastic… for being such a great patient.
We finally got to leave after 1pm, we finally found out once and for all that he wasn’t allergic to penicillin (although now we have no idea why he broke out in hives when he took it when he was younger) and we were heading back to the hotel with a new movie for him to watch.
It sure did make for a long day but Cameron handled all the waiting, all the pain, all the discomfort and all the overwhelming issues that must have come from having Autism and being stuck in a place like a hospital… and he handled it very well.
For how well it all went, I sure do hope that we don’t have to do it again any time soon.
I think, sometimes, we forget about just how bad it really can be. The first thing you’re told when your child is delayed in speaking is that Einstein didn’t talk until he was 4. Then we hear about other amazing ‘savant’ Autistic people, even watch the Temple Grandin movie and start to think that maybe it’s not such a bad thing.
Then you get out into the Autism community and start talking to other people and even discover people with Autism themselves, discussing, sharing, informing… being involved. Many of whom are very proud of being Autistic actually, they recognize that they’re not less than anyone else, that they actually have advantages even over some people.
When you’re not doing that, you’re doing your own family thing with your own Autism issues and you get excited when your own child hits milestones, reaches achievements and so forth.
You can very easily get lost in it all because those that are unable to speak, those that are unable to leave the house without being in danger, those who have extremely stressful situations at home with their completely out of control children… we don’t get to hear from them. They don’t get the time to join communities or to share experiences. Many of whom don’t even want to share because it’s simply too hard.
I think we can very easily sensationalize the very thing we’re all fighting so very hard against. We get so caught up in all the wonderful news, in all the good that can come of it that we easily forget just how ugly and terrible it can really be. Out of sight, out of mind, right?
I was recently watching twitter and a few sites where people with Autism themselves were expressing how proud they were but more so, going on about how others should be proud, how they are fully capable of everything that anyone else is capable of… and I couldn’t help but wonder how much that would hurt those parents out there who’s children simply never will be capable of much, much less everything that you or I can be.
How hurtful would it be to watch your children hurt themselves and constantly be in a rage… and then hear this person go on and on about how wonderful it is?
I don’t know what I would suggest to either as I certainly would never want to suggest that the person not be proud and not be loud about it. I mean, shout it from the roof tops if you’re capable! It’s truly wonderful.
I guess we just have to be sure that no matter how proud, how happy, how amazing the accomplishment, no matter how sensational it can seem… there is an ugly side. There is a reason that Autism needs to be prevented.
We fight for our children, we fight for ourselves, we fight for those who have yet to be diagnosed… but most importantly, we fight for those who can’t fight for themselves. Those who are either lost within their own minds or too busy doing everything they can for their children that they can’t be out there fighting for everyone else.
When you talk about Autism with someone else, either casually or in the Autism community, remember those people and the people who are happily having children that may soon discover that their lives will be harder than they ever dreamed possible.
They need our support even more than the rest of us, even though their voices may be the quietest.
This probably ranks #2 on the hot topic debates in the Autism community where parents are fighting with the ‘experts’. Basically that means that there is a whole lot more to this than a simple yes or no answer, there is no black and white here and therefore it causes a lot of tensions.
I’d like to cover this topic in a few areas: what is the diet, what is the theory behind it and will it work.
Breaking it down to it’s simplest form, the gluten is wheat and the casein is dairy. This isn’t limited to bread and milk however, it covers just about everything you can find in your local grocery store aside from meats and veggies/fruit. So cereal, pasta, cheese, cake, snacks, waffer cones you hold ice cream in… everything.
Moving to a GF/CF diet can be a rather huge step for the average person as it means no more sandwiches, switching to brown rice pasta and giving up just about everything you eat. No more hamburgers, cakes on your birthday, cookies, grilled cheese, kraft dinner… we’re talking about eliminating just about everything on some people’s regular diet.
In our house, we’ve put our son on soy milk, brown rice pasta, eggs, bananas and peanut butter and a few other things. You learn to find them when you have to. Also, you don’t have to be all that limited if you’re resourceful. There are some great sites around the internet with some absolutely amazing GF/CF recipes and grocery stores are growing their GF/CF sections a lot over the last few years.
The truth of the matter is, gluten is quite bad for you. There’s no healthy reason at all to eat it, it’s simply added to our foods to give it it’s texture, consistency, help preserve it… stuff like that. If everyone ate less gluten, we’d all be healthier so there’s no reason not to give the diet a try. Gluten proteins and Casein proteins are not essential to a healthy diet and therefore there’s not only no risk in being on the diet, it’s actually good for you.
I don’t think they’ve proven it scientifically, but they have narrowed it down pretty good… the theory is that some Autistic children have a digestive problem where their systems are unable to break down the gluten and casein proteins in their stomachs. This causes them to work through their systems, entering the blood stream and eventually finding their way to the brain where they act like a pretty powerful drug, causing the children to become very hyper, to see things (colours and trails behind moving objects), become irrational, unable to speak, clumsy and so forth. Imagine a grown man tripping out on heroin and you can begin to see similarities in your child after eating some bread.
Well, this is the tricky part and where the heated debates come into play. Even the ‘experts’ can’t agree because they can’t get the same results twice. In this article, you can see that they have concluded that the diet does help and further down the article lists another study where others concluded that it doesn’t: foodconsumer.org
Autism is a pretty tricky condition with seemingly thousands of causes, thousands of differences and thousands of different ways to ease it. This means that yes, the diet might work… might. However, some Autistic children simply are hyper, clumsy, unable to communicate… that’s how they function and unfortunately, the diet will not change that.
But a lot of times, the diet actually will help and therefore, I really recommend that you at least try it… a week, 2. Try.
In Cameron‘s case, we put him on the diet and saw a difference almost immediately… less repetitive motions, more eye contact, more calm. It was a miracle in our eyes and we never looked back. Our house is almost completely gluten free at this point.
And this is how I know that not all answers are guarantees for everyone. I said we’re almost gluten free, not casein free. People lump the two together but in reality, just as it may or may not work, in our case, it half worked.
Once we removed gluten from Cameron‘s diet, he was instantly a different child. The casein however, made very little difference. If he has too much, it does affect him a little. But for the most part, we can still give him orange cheese, yogurt and ice cream. We keep him on soy milk though.
Don’t listen to experts, don’t listen to parents. The only person you can listen to is your own instincts and your child’s results. There’s no harm in trying the diet, there’s no harm in not trying it. If you do try it, you may see results, you might not.
There’s only one thing I can say to all parents of all Autistic children…. try everything!! If it worked for 1 child out of one million, try it. It might work for you. Try the diet, you don’t have to commit to years of eating food you don’t like. Just try it.
As a father of a child with Autism, I find discussions and information around the Internet at an ever growing rate, which I find encouraging. But it seems to be almost exclusively from moms, about moms or at the very least, from a mom’s perspective.
That’s fine really, since no one will ever be able to take the place of a child’s mom, much less when the child has special needs. I can tell you, from my own experience, that no one is more important in my son’s life, nor more capable of telling you everything about his life and his disorder than his mom is, however I can also tell you that being a father comes with it’s own set of challenges and experiences.
I think it’s no secret that men in general are simply less capable of dealing with emotion, family hardships and probably hardest of all… accepting that their child isn’t perfect and there’s nothing they can do about it.
We, as men, bottle it up and would rather find our own hammer and nails, and keep working at it until it’s fixed rather than talk to someone about it much less be taught what to do.
I am a father of two boys, my oldest has Autism and I may be one of the few male voices out there, but I’m going to tell my story anyway. Maybe it’ll help some other fathers out there, maybe even some mothers.
Even if it doesn’t, it’ll help me down the road and possibly even my son… this is my journal, my introduction to Autism.
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