May 13, 2011

Autism robbed me of my son.

I have never spoken those words.
But I have heard them.

I recently read a blog post that mentioned the writer's frustration with those words. I wish I could remember which blog it was, but I honestly cannot. There are so many wonderfully written special needs blogs that I can get lost in them for hours if I am not careful. So many of them make me pause to reflect on things that are dear to me, as well as things that are extremely difficult to think about.

And so it was with this particular post ....

Is it wrong for autism-parents to say that the disorder robbed us of our sons and daughters?

I have heard a dear friend of mine say it.

I have heard another dear friend comment on how uncomfortable the words make her feel.

I must admit -- and this is probably going to make me a little unpopular with some folks -- that my first reaction to the post was to wonder if the writer's child was hanging out on that "high functioning" end of the spectrum or if he/she was chillin' with the kiddos closer to my son's place -- you know, the kids whose autism is never, ever in doubt.

Oh boy. There it is.

I am probably going to be shunned by parents who think I just trivialized their worries concerning their children.

I do not mean to. Honestly.

I know that all parents have sincere, agonizing worries when their children struggle with communication and social skills enough to legitimately be placed on the autism spectrum.

But in all honestly, the sentiment that the writer takes issue with -- the idea that autism robbed a parent of a son or daughter -- is much easier to understand when you picture a child who is unable to utter a single word ... a child who is incapable of engaging in any meaningful conversation with anyone ... a child who cannot begin to understand the purpose of play ... a child who struggles with the meaning behind not only words, but even gestures.

I don't ever recall thinking that autism "robbed me of my son." I am a very literal person, and I think the words don't make perfect sense to me because I believe Daniel always has had autism -- from the time he entered the world. And, so, my thinking goes: how could autism rob me of a child when my child has always been autistic -- when autism has always been a part of him, and I have never stopped loving him as a son from the day he was born?

But don't get me wrong.

I do believe autism robs.

And robs and robs and robs.

It definitely robbed my son. It robbed him of so many things that I can't even begin to really think about them -- because to think about them would be to return to days when I was so lost in grief that I almost lost myself.

It robbed me, too, as his mother, and it robbed his dad as a father.

It robbed me as a wife. And it robbed Daniel's dad as a husband.

It robbed Olivia as a sister.

And it robbed Daniel's grandparents.

Autism robbed me of an opportunity to know my son in the way I should have been able to.

And it robs Daniel every day of the ability to show the world just how much is going on inside that mysterious mind in his beautiful head.

So would I say that autism robbed me of my child? No, I would not.

But I take no issue with those who feel that way, only to say that I hope all parents who struggle with autism find a way to laugh each day, to rejoice in "small" accomplishments, and to find their way back to what matters most when they find themselves slipping into despair.


  1. What a good and brave post!
    I am on the outside looking in you might say. I try to help and support my friends and family that have autistic children. My husband used to work with Autistic children and adults and in all my years there is ONE thing that I have found ALL special needs families to have in common - The Need to be Heard.
    From where they are at and what they are going through.
    I don't understand why there is so much in fighting when each one should be embracing the other and saying "I am sorry that's what your going through."
    And in your honor I am going to blog about this tomorrow. Please come on by. Blessed Rain

    If anyone has anything rude or mean to say to Leah please read my blog FIRST, thank you.

  3. I agree with you. Autism never robbed ME of anything. Dude is, and always has been Dude and I've always accepted that. What it's robbed him of is a bit trickier of a question. There are certainly things that he could and would be doing without autism that are impossible with it. But for the most part he's a happy kid, and not counting the things Dad makes him do, or school (another Dad idea,he's sure) he's doing what he enjoys. Don't missunderstand me, it's a hard slog on a long road, but it is what it is. And if a 'cure' were suddenly found for autism, I'd actually have to think for a bit before I signed him up for it. I'd definitely sign him up, but I'd have to think about it first.

  4. YES! And I totally understand your feelings of concern that you may get flamed for saying what you've said. As much as I'd like to think my blog can be that safe place where all the contents of my head may be emptied (and there are a few!), the reality is that I'm often scared to say the things I sometimes feel about M's autism and the life we all live as a result. Oh, and thank you for your text. I suck and haven't responded! Things are much better here, albeit a bit burpy still :) But I am hopeful we won't have to go to the hospital again for any, uh, 'assistance,' and I'm hopeful that when we do finally get in to see the specialists there are some 'fixable' things that could help improve his quality of life...and, well, ours too! I will keep you posted. Hugs from CA!

  5. I just discovered your blog and I love this entry. You have completely captured the way that I feel every single day. My son sounds so much like yours. The part about having to sit at the dance studio being so exhausting is how I have felt for the past four years about my younger son's baseball games. Sometimes I don't know why I bother going. I spend the whole game watching my autistic son. It doesn't seem like sitting at a game would be exhausting work, but as you can imagine, it's torture.

  6. Thanks, y'all. I don't respond often to the comments left on my blog but that doesn't mean I don't read them. I love to get comments. And I feel so incredibly complimented when someone tells me I have managed to describe the way they sometimes feel. Thank you for reaching out to me. I can use all the kind words and encouragement I can get.