Archive | September, 2010

Staying positive in the face of Autism

Autism is usually synonymous with depression… whether it be the person with Autism feeling depression due to their inability to be a ‘normal’ part of society and have friends or if it’s a parent (family member) that has to deal with the financial burden, lack of sleep, stresses of parenting and so on and so forth, not to mention feeling terrible should their child also be depressed.

Not to throw more fuel onto the fire, you also have those who feel violated due to losing their child at some point due to regressive Autism, where their child was developing perfectly well and then, for what ever reason, their child regressed back to a non-speaking, diaper wearing toddler the size of a 3 year old.

The question is, how do you stay positive with all of this going against you? How do you keep a cheerful disposition and go on laughing with friends and encouraging others to be happy as well?

Sadly, I have no miracle cure answer for you. If I did, I’d be rich and this blog would be full of ads selling it to you.

No, there is no miracle answer that will just make you happy because even if there was, all those things would still exist and you’d just fall back into being miserable the moment you stopped using it.

Instead, what I can offer to you is a change of perspective. A way of looking at the positive instead of the negative.

Your child was not ripped away, your child is still there. And your child is still beautiful and amazing and fighting just as hard as you, maybe even harder.. it’s just not evident. Your child is an inspiration whether they can draw Rome from memory, play piano without lessons, recite Pi to 20,000+ places or if they’re just starting to say their first words at 10 years of age.

Dealing with the world is hard enough, doing it with Autism is near impossible but they’re doing their best and in a way, the ones that aren’t savants are far more inspirational than those that are.

They are doing their best and they are doing well and it’s all because of you!

Financial burdens are everywhere, not just with parents of children with Autism. Imagine if your child was actually dying and you had to get a 2nd or 3rd mortgage only to lose the battle anyway… it happens… every single day. And those people, while sad, are happy that they did all they could and gave their child a good life while they had it.

Self pity is a very derogatory term these days, it is something that people tell you is never any good. It has it’s purpose, it’s not a bad thing… unless you let it consume you. You need to feel it but you need to move forward.

Your child was never lost to you, your child is right there with you, verbal or not, toilet trained or not, savant or not… they love you, they need you, they want you.

If all you can do is focus on the misery, the depression, the anger… then perhaps you didn’t lose your child, perhaps your child lost you.

Your child, no matter how many meltdowns or tantrums or hateful things they may say… they would never want you to be consumed by depression or hate. They would never want you to stop being happy, even if they think they can never feel that for themselves.

The biggest disservice you could ever do your child is to lose the love. Not just the love for them, but for your fellow man, for your fellow parent who is going through the same thing, maybe even far worse off than yourself.

Stand up, wear that smile as you count your blessings and share it with those that need it just as much or more than you do.

Happiness is contagious, but so is sadness… so is hate. Which does your child wish to share with the world? Which does your child want you to share with the world?

I hope one day my son will be proud of me for always doing my best to be happy, to make others happy and doing my best to make sure he is happy as well.

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Would you continue to let your doctor see your children if he lost his medical license?

Let say your family doctor did some very painful tests on other children that resulted in him losing his medical license… would you continue to bring your child to that doctor for medical treatment?

What if the doctor did those tests while patenting his own ‘medicine’ as an alternative to what he was hoping to discredit? What if you found out that lawyers were paying him to discredit it so that it would strengthen some court case they had going?

Ok, I think it’s fairly evident that I’m talking about Dr Wakefield but forget about who it is or what conspiracy theories you know surrounding his whole situation and imagine it was just your family doctor right there in your town.

You see, we are all too far removed from Dr. Wakefield to put it into proper perspective, in my opinion. He’s a celebrity doctor now, a martyr. Many people praise him for saying what they want to hear and so they dismiss the stories, theories and even facts.

This is not an article about whether or not he was right, it’s about what we know of a doctor… a doctor that could have been checking out your children, just as easily as anyone else’s child.

Remove yourself from stories… true or false.. and go by what has happened and imagine he was your doctor and ask: Would you continue to bring your child to a doctor that did unethical tests and hurt other children resulting in the loss of his medical license?

Yes? or No?

I’m sure, if your judgment is clouded enough by the hoopla of it all and unable to separate yourself from the situation, that you may just praise him as a God enough to say yes. But for those who have any real common sense and can put that all aside and imagine it was actually just your family doctor right there in your town, the answer must be a very absolute no. Even if we were 99.9% certain that the good doctor was just a victim of global conspiracy, we’d still say no as a responsible parent looking out for the safety of our children.

So let me ask you this, if you would not take your child to such a doctor for the safety of your child, why in the world would you listen to him and take his words as if they were a prescription from God when he didn’t even see your children in the first place?!?

If you know, as I do, that no doctor knows my child without seeing them, why would you think that this doctor holds dominion over all children without seeing them? I mean, imagine your family doctor up and left the country because of it all… would you still continue to see that doctor? Would you still listen to what he tells you to do?

Maybe it’s just me, maybe I’m the one confused by all of this. Even if I had the undisputed greatest doctor in the world caring for my child, and these allegations came out and events happened such as losing his license, leaving the country, being discredited and findings retracted… I’d stop listening to what he tells me.

I know I’m strange like that, but it just kind of makes sense to me. My own health, and certainly my children’s health, are far too important to me to be dismissing these things and hoping that maybe his conspiracy theory stories are true… cause let’s face it, if he did do all those things, he wouldn’t lie about conspiracy theories… right?? Right??

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Sleeping in shifts

Sleep is always an elusive beast for parents as it is, but when you throw in details such as Autism, the fact that there’s more than one child sharing the bedroom, a really crazy big work load and a wife with Fibromyalgia… sleep can be near impossible to come by.

My boys are 5 and 2, my 5 year old (Cameron) being the one with Autism. For the most part, neither of them really have much difficulty sleeping, it’s just the getting to sleep part that can be a little rough. If either of them isn’t sleepy, or has something on their mind (which is a very definite possibility with Autism), they’ll just stay awake and keep the other one awake with them. And if one of them should have bad dreams or just wake up randomly in the middle of the night, they both wake up… and I have to get up.

Then there’s Natalie (my wife) who has Fibromyalgia and is very much unable to sleep most nights… either due to pain or simple discomfort that keeps her limbs moving all night long. I am usually able to sleep through it myself but I don’t get as restful of a sleep as I would otherwise.

I work way to much as it is, but for the last month, I had worked 17 hours per day for 3 weeks straight, including week-ends. This meant that I was usually going to bed around 3am and then getting up at 6 or 7 with my boys.

The only way that myself and even my wife can handle this sort of thing is to sleep in shifts. I tend to be up with my boys early in the morning but she has to get up as well to help get everything ready for school.  Most of the time though, she’ll go to bed at 8am and sleep until 9:30, when I go to work. Then I work until 3am.

Come the week-end however, I get up with the boys still while Natalie can sleep in until what ever time she chooses. But when she gets up, I go back to bed to catch up on what I missed through the week.

It’s certainly not ideal, and I would love a full 8 hours sleep but after a few years, I’m not entirely sure I could keep myself knocked out for that long anyhow. So it is what it is… we sleep in shifts.

With Autism, Fibromyalgia, a crazy work load and 2 boys waking or keeping each other awake… it’s the system we’ve had to become accustomed to.

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The Source of my Inspiration

Spending most of my time online, I find a lot of people that are very good with words and are able to inspire and motivate people simply with the words they say. Some are just random people on twitter or facebook, others, like Temple Grandin, are reaching us through film, news or other means that being a celebrity can bring you.

While I do enjoy reading the posts or watching the videos, I find that they don’t inspire me anywhere near as much as my own children do.

I think that most of us take reading and writing for granted, and just assume that our children can do it and so we practice with them. But when you really think about it, how difficult is that really? Especially with limited motor skills, much less understanding of language?

That’s just one subject, think of ALL the things being bombarded on children to learn… and sure, we help them as best we can, but it’s a lot! And most of the time, we go through the motions with them without usually giving much thought into just how hard it must be for them.

Then you throw something like Autism on top of all the other problems… you see your child sad because they have no friends, they get frustrated easily because none of what you’re teaching makes much sense, they feel overwhelmed very easily, they have even less motor skills than what you expect they should at their age… and yet, despite the difficulty and despite the odds, they keep trying.

My son has done his first 5 days of his second year at school and has yet to get a single thinking chair or time out. He’s been doing well at learning how to read 3 letter words and can write his name. He even does addition and subtraction on numbers under 10! He has been verbal for less than half of his life and here he is overcoming so much… I think about it and wonder… would I keep trying as hard as he does?

Yes, I find all people with Autism to be amazing, yes I do constantly find myself impressed with the amount of support that parents give each other and yes, motivational and inspirational people move me with their words… but the real source of my inspiration, the ones that truly makes me believe that you can do anything…. are my children.

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How do you feel about seclusion versus inclusion schools or programs?

There’s been some debate over whether or not a child with Autism is better off in a classroom with other Autistic children or if they’re better off in a classroom of NT (NeuroTypical) children… the obvious answer is, why not both?

I guess I am just spoiled (or my son is) in that his school will offer an hour or two of ‘integration’ time where my son gets to join a class of children his age where the ‘normal’ children are. He tends to sit quietly to himself, I could only imagine how difficult it would be when I think back to my childhood, but it is a good experience for him. Even if all he does is observe, it’s educational. If it didn’t benefit him, I could simply tell them to stop and they would. It’s great when a school listens to the parents!

The problem is that not everyone has a school that is that flexible. Most schools don’t even have a mix where you get that option. You’re either in with other Autistics or you’re not and that’s that. If that’s the case, you’re left having to choose.

My advice to you, as it is with every parent of every child in every situation, stop expecting someone else to do what you need them to do. If your child is in a classroom with only Autistic children, then take the time (make the time if you have to) and get your child out to a park or play centre as much as you possibly can and give them that hour or two ‘integration’ time yourself.

As parents, we stretch our time pretty thin but you know what? If you had an expert at time management step in and help you out, you’d find that you have a lot more time available to you than you think. And even if you don’t, make it! This is your child we’re talking about and no one anywhere ever will give your child everything they need no matter how much you want it.

I had to sell my house and lose just about everything to find this school for him. So no, I’m not spoiled. I deserve it, my son deserves it and we did what we had to do to get it. And when he gets home, we still go to visit family and friends, parks, the beach and other places he enjoys so he can play with more children.

If your child is secluded and you don’t like it? It’s your fault. If your child is included and you don’t like it? It’s your fault. If you can raise such a loud voice as to shake the foundations of the town in which you live because you’re so outraged that they’re not doing what your child needs… why can’t you put that energy into doing something about it yourself?

Your child is not second best and so you shouldn’t settle for second best. You and your child need those schools and programs but you know what? They’re not there to do everything for you.

Get involved in making the changes required and more importantly, get involved with your child. Make the time if there is none. Because in the end, years later, if things don’t turn out how you wanted, there will be no one to blame but yourself.

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