Sam’s World ~ A Little Clarification

boy autism spectrum sams world

I’d like to clear up, or rather clarify, something I said in my post last week.

This may surprise people and may even anger some but I don’t care about a cure. I’m not really interested in knowing a cause.”

I’m not taking back what I said but in and of itself it could be taken the wrong way – as if I don’t really care about my son. The road of autism is pretty broad and those words, not quite filled out, could make someone who is walking that same journey on a different part of the path feel like they are doing something wrong if they are concerned about a cause and a cure.

For us, for Sam, we live with the reality that he was born autistic, he is autistic, and he will be autistic. It is a true truth fact. It doesn’t mean that we haven’t second guessed what could have caused it. Was it the restoration paint job Rob was working that exposed us to lead paint during my pregnancy? Is there any connection between my gestational diabetes? Looking at great grandparents, specifically our grandfathers, is it a genetic thing?

It also doesn’t mean that I haven’t wondered in the quiet of my own mind and heart what Sam would be like as a typical thirteen year old kid. But I rarely go there because I just can’t see him any other way…his quirks, his issues, his struggles, his sense of humor, his uncanny way of speaking so simply and his plain insight, all of his strengths and weaknesses make him who he is and whether that is all due to his autism or not really doesn’t figure. It’s who he is.

Autism isn’t the definition of who he is…it’s just part of who he is. Like I have green eyes but that doesn’t make me who I am it’s just part of who I am. And if I am so focused on trying to cure this part of him then I run the risk of missing out on who he is. And, in the words of his father, “If I had a normal kid I wouldn’t have Sam. Sam is more…Sam is Sam.”

boy autism spectrum sams world

The are two other considerations I have about the whole cause and cure subject.

First, there is a ton of money and effort being put into what causes autism and finding a possible cure. But there is precious little in place for autistic adults. My son may not do it exactly the same way but he is doing what every living creature born on this planet does ~ he’s growing up. And if all of our energy is focused on one small percentage of time that makes up a human life then there is almost nothing left to help him or families with autistic adults cope with the post infant and adolescent world that we will eventually live in. We’re already experiencing this to a certain degree and he just became a teenager. (Side bar: There is no doubt that early intervention makes a tremendous difference with autism. I am all for putting a structure in place that meets the needs of the family with a young autistic child. But I think more needs to be done to help and assist those same families as their child grows.)

My second consideration may seem wonky and disconnected at first.

90% of all pregnancies with a prenatal diagnosis of Down Syndrome end in abortion. What do you think will happen if a genetic cause is ever discovered for autism? Our society views any form of disability as a detriment and value of life is balanced on the razor sharp edge of quality of life determined by some obscure feeling or humanistic reasoning. Anything not normal, not typical, is a liability and we are not a people that tolerates the burden of imperfection well. But the value of human life is in it’s being…it’s very existence as the image bearer of God.
boy autism spectrum sams world
Sam’s life, autism and all, is not some tragic burden but a constant source of delight for our family. The struggles and difficulties are legit, and at times, exhausting. But he is worth it…just as he is. And we know that God will use Sam to display His glory in a way that is enhanced by his autism.

Now, all that said doesn’t mean that we don’t do things to work with and improve life for Sam. While we
may not be looking for a cure we do want to help him connect and be a functioning productive part of society. There are things, like discipline and therapies, that are of great benefit and they should be utilized as much as possible.

If you’ve spent any time on the blog at all you know we do a gluten free diet with Sam. (You can read more about why here.) Since last year I have come across two websites that are quite helpful to those who do gluten free regardless of the reason. What I really like about them both is that they share brand names that are easily found and accessible.

This first link is really a link to a bunch of links. The food stuff is listed by category though so it’s easy to navigate.

The second link is to a really great gluten free blog. The Gluten Free Spouse has a really great list of normal everyday brands that are gf. Like off the shelves of Walmart or Publix kind of brands so it’s really helpful.

This week’s Sam story is a food related funny from several years ago when we were introducing meat into his diet.
Rob: “Sam, why won’t you try this chicken?”
Sam: “Because it’s made out of meat.”

Made perfect sense to him.

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