Tag Archives: autism parenting

No Dead Bodies Required – On Parental Effort in Disability

dead-bodyIf you have an autistic child, you’ve seen the stories. Friends tend to tag you in them or PM you to share. They’re stories of autistic kids who didn’t talk but do now, children who sing the national anthem, young women who compete in beauty pageants, and those on the spectrum who graduate from college. And you don’t mind the stories, because human beings persevering in the face of adversity is a beautiful thing.

But invariably, somewhere in the story is a quote that goes something like this:

“When experts told her her son would never talk, never have friends, never graduate, she declared ‘Over my dead body.'”

Those quotes are all sorts of inspirational – for some. But if you have a child whose disability is severe, such quotes are felt like a slap. Because some disabilities cannot be overcome. They can be accepted, worked with, planned for, and accommodated, but no amount of parental love and determination can erase them. Callum is not going to go to law school. He’s simply not wired for that, and I can’t rewire him. The fact that I can accept that and love him unconditionally does not reflect him having not been raised by someone willing to try harder.

Because – over my dead body – will he be relegated as somehow less worthy for not doing the unexpected and unrealistic. The presence of an autistic adult in the world who doesn’t make the newspaper is not a statement of failure. Not of society, not of his family, and certainly not of himself. And other than steadfastly insisting he be given every reasonable opportunity any other person has to live, learn, and grow, no other declarations need be made – and no dead bodies required.

Why We’re Still Not Sleeping

61797930_2850851084988590_524884100658495488_oWhen you’re raising a typically-developing child, eventually they stick to their own beds and no longer sneak in to cuddle. There comes a time they don’t want that constant touch. It’s bittersweet. But it’s okay, because you assume that one day they’ll have that need met again when they partner off.

But when you have a child whose developmental age is very likely to remain below five, there’s a good chance that touch need will one day no longer be met. Only it might still be felt. And that’s one of those things that can keep your eyes wide open at 3 a.m.

But to be best prepared for future supported living, we will have to teach him to sleep in his own bed (although that’s still likely more than a decade away).

Then I look at him in the light from the window. At peace in the certainty he is loved and snuggled up to the people he has no understanding will one day die. And that’s why I give in.

Because I want him to soak it up all he can while we’re here. I want him to remember our arms.

On Shortcomings and Attention Equity: Hard Truths in Special Needs Parenting

14628103_10208949304104722_2135956070_nThere’s nothing quite like parenting to make us confront our shortcomings.

Mr. Flappiness and Bronwyn are so very alike. They both have diagnosed ADHD – the kind that puts the H in ADHD, if you know what I mean. But they have all the other delightful traits that those with ADHD often have – the creativity, quick thinking, etc. that those of us who love them adore.

But because they are so very alike in temperament, interests, and sense of humor, in addition to the ADHD, they are close. They get a kick out of each other. Bronwyn often seems to prefer him to me, me being a little too low-key to entertain her some days. They’re two peas in a pod, my baby girl and her daddy.

Sometimes, I’m envious of her relationship with him — although I understand it. If ever a woman were a daddy’s girl, it’s me. I wish the introvert and lover of air conditioning in me were less so. She’s beautiful to me, but we’re quite different personalities. Since I share a temperament and personality with Callum, I know some things just are.

But because I love her so, sometimes I envy their closeness and worry – deep in the heart of the mother who raises both a typical AND a special needs child.  I both fear and mourn the certainty there is not enough of me with regard to my daughter. Her needs are great too. The problem is that Callum’s – who is autistic, high needs – are so very immediate and not delayable. 

Mr. Flappiness is on the road often now, and it’s taking its toll.  Big changes for all of us. Bronwyn is taking it hardest.  This morning, she woke up and came in to snuggle with me. She talked about how much she misses daddy and said, “The truth is, Mom, daddy is just more FUN than you.” Ouch.  

I acknowledged the difficulty she’s having, and I told her I’m sorry I’m not as much of her kind of fun (theme parks, producing videos, etc.) as daddy. And my sweet girl put her arms around me and then clarified, “Mom, daddy is more fun than you.  But you’re more loving.  I go to daddy for fun and you for love. That’s what I love about you best.”

Well, hell.  That’s for sure a conversation I’ll replay in my head obsessively as I continue raising these two.  But the combination of those big beautiful blue eyes – my grandmother’s – and those words?  Deep breaths kind of love right there.  Words that felt a little like absolution just when I’m sure I’m failing.  

She comes to me for love.

I may be doing lots of things wrong.  But I hope that statement counts. I have to be doing something right – right?