Tag Archives | future

Family Dinner is Not What I Thought It Would Be

When you have a baby, and you’re standing there with this little new life of just a few minutes… your life flashes before your eyes, only it’s not the life you’ve had but the life you have yet to have.

You picture teaching this new life how to walk, how to say it’s first word, how to throw a ball, ride a bike… eventually, how to drive. So much floods your mind that you literally get light headed thinking about it. And as the years start rolling and you start doing some of those things, your mind starts to picture the more simple things as well, such as bed time stories, visits to the park, school and family dinners where everyone talks to each other.

But then you find out that your child has Autism (or any disorder/disease really) and all of those happy thoughts of your life yet to be come flooding through you once again, only this time it’s not of how you look forward to them… but… will they happen at all?

We bought my son a bike, and I made a solid attempt at teaching him to ride it but he could never get his feet to do what was needed of them. And if you’ve ever seen a 4 year old with Autism try to run, you would see why. So I’ve put it off for another year, we can try again as he learns more control.

I tried to teach him how to catch a ball but again,  his hands simply don’t have the discipline and coordination to do the things that are required of them.

Family dinner is one area that has been particularly difficult… and it’s not because he won’t talk to us, as you might expect from a child with Autism.

While it’s true that Cameron has a hard time with the social aspect, it’s not that he can’t talk to us… he does, it’s just that he can’t sit there for a whole meal. Essentially what happens is that myself, my wife and my 2 year old all sit around and eat while Cameron runs in and takes a bite and then runs back out to the play room to play. We give him a bit and then call him back to have another bite and he disappears again.

This has been the routine ever since he’s been able to do so… it means having a dinner with and without the whole family. It’s not what I had pictured at all, but I’ll take what I can get.

The other issue is that he’s on a GFCF diet, which means that 9 times out of 10, he’s eating a specially prepared meal that doesn’t match ours… we do try to stick to the same diet however my son’s food issues extend beyond just what we limit him on. He also refuses to eat the majority of vegetables and all meats, including fish and chicken. He has never once tried fast food and refuses to, but he does love candy and chocolate, not the best supper options.

So there we sit, watching my son run in and out through the entire meal, eating something different from the rest of us. Not at all what I had pictured when I first held him in my arms, not at all the happy family setting you see in movies and television.

We often get funny looks or comments from friends and family when they see us let him run around and play, rather than sit up like a good big boy and eat until his plate is empty (right? you all remember your parents making you do that?)… well, the fact is, either we do it this way or he doesn’t eat his dinner.

I’d much rather have a child with a severely limited diet actually eat, even if it means he plays all the while, than to have him not eat at all.

It’s not what I pictured, it’s not what you see on tv and it’s not how people tell you it should be… but it’s my family, he’s my son and he’s happy and healthy so to me, it’s the perfect family dinner.

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Something Many Parents Forget – Respect For Your Child

It probably slips our minds a lot of times as we watch our children be silly, do dumb things, need to be shown how to do just about everything and so on and so on but make no mistake, they’re growing up in a world that we ourselves have trouble dealing with and we’re adults!

Life is hard enough any which way you slice it but when you consider the age in which we live where technology advances every few months, messages are sent at light speed, we have more ways to communicate then ever before and most of us live in perpetual information overload… our children are living it too, and mastering it!

Let’s not forget the usual stuff that has now gotten much more advanced, and I don’t mean technology. I mean things like bullying and the world providing false images of perfection on every magazine cover and commercial that you see… is there any wonder that you hear about tragic suicides in the news all the time?

That right there is a lot to grow up with but then you throw in something like Autism into the mix and suddenly you feel like you’re in a hockey game where the other team is bigger, faster and has a 5 goal advantage before the game even starts. I’d probably just drop my stick and skate off the ice ranting about how unfair that is and why even bother and so forth…. and I’m an adult.

It’s our job as parents to prepare them for all of that as best we can, to give them the tools, the support and anything they will ever need from us to be able to not just cope with that but to excel… to somehow get 6 goals and win the game anyhow.

I’d like to think that even if we failed and they didn’t win the game, that at least we gave it our best try, our children gave it their best try and we all had fun playing the game no matter the outcome.

Ok, enough with the hockey metaphor but the point is, as you hold their hand and roll your eyes at their silliness… remember that they are the ones going through it, they are the ones that have to take all that you give them and then make it happen. They are the ones with the unfair task ahead of them, you’re task is not easy either but you can’t do it for them.

When I say that I respect those that can that can endure and overcome all insurmountable odds… do you imagine athletes or do you picture our own silly little chocolate faced monsters that refuse to hang their coat up?

I don’t think I could ever explain it but when I think about the life that my son will have, all that he’ll have to overcome, I feel bad, uncertain, scared… plus I respect him for it and all that he’s done thus far. It’s that respect which allows me to look at him differently, more positively, more proudly.

I don’t envy our children, they have quite the interesting future with a lot of uncertainty and challenges ahead of them but if anyone can do it, they can.

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The Hardest Part of Autism – Looking To The Future

I’ve had some people ask me what the hardest part is of having an Autistic son is and I kind of want to smack them. Don’t get me wrong, it’s a fair question but really, it’s an extremely overwhelming question.

Let’s see, we’ll start with the basics like his refusal to eat most foods, he’s never touched meat of any kind and then add on the fact that the stuff he will eat, he can’t because it makes him out of control. Then there’s his constant temper tantrums, more so a year ago than now but still happen. There’s his constant sadness as he comes home from school telling us how he has no friends. There’s the fear we have any time anyone anywhere ever has to take care of him, whether it’s family, baby sitters, teachers, sunday school teachers… anyone. Please don’t enrage him, please don’t feed him! There’s the stress that goes into every outing… right now we need to go on a week long trip, we have no idea how we’ll feed him since hotel rooms and restaurants aren’t his best situations to be in. Then there’s the financial burden, not only is there $150/hr speech therapy sessions but simple things like gluten free food cost a lot more than normal groceries. Let’s not forget that we picked up and sold our house, at a loss, to get him to a city where there’s a school that is perfect for him. That’s a good start….

On top of all of this there’s one thing that is actually harder than all of that, one thing that my wife and I have sat down and discussed many times and laid awake at night thinking about…. Cameron’s future.

I think most parents think about their children’s future quite a bit, most dream of great things and have their worries. It’s safe to say that most parents simply wish for their children to have a better life than they did themselves.

However, when your child is Autistic, you have a whole other world of uncertainty added on… one where the dreams fade a little, one where the hopes of a better life become more a matter of hope than desire. When your child is Autistic, all you want for them, is to be normal.

I think some parents pray for a savant, a child who’ll find that one truly amazing and indescribable talent that will bring the media running and make your child a prodigy… but I think most parents, like us, only want for our child to be able to grow up happy, to be able to finish school, have friends, get a good job, have a family of their own and all those good things that many people simply take for granted.

I think, for me anyhow, the hardest part is looking to the future and thinking to myself, what if he doesn’t have that? What if his life only gets harder? I mean, having no friends is hard at the age of 4 but it can make a teenager suicidal. What if he never has a family of his own? No one to love, to care for him other than his parents?

We can sell our house at a loss, we can handle the craziness when someone slips him a cookie that he shouldn’t have, we can handle the tantrums and the sadness… we can even handle having to eat mr noodles for a while to make sure he gets the things he needs… but looking to the future is something I can’t really handle. It’s something I don’t like to think about.

I’ve learned that all I can do is put it out of my mind and focus on right now. I just have to keep eating those mr noodles, keep helping him through the tantrums, keep getting him into the schools and programs he needs and maybe, just maybe…. hopefully… the future will sort itself out. Because if I spend all my time dwelling on what’s hardest, I’ll miss what is the best…. and that’s here and now.

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