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The Unique Grief of Special Needs Parents

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The day I found out my boy had autism, I wasn’t shocked or upset or wounded.  I was relieved.

I was also in denial.

My boy was smart, and I knew that all too well. He was high-functioning, and I was confident that we would be able to help him overcome any obstacles before starting kindergarten. By the time he started school, no one would even know. They might just think he was a little quirky. Plenty of people are quirky. No big deal.

So I spent that first year with few cares at all, reading a handful of books, learning about social stories and visual schedules and the basics of Asperger’s, convinced that we would be past all of it in a couple of years.

Then kindergarten came, and my world got smashed to pieces.

Things didn’t work. The new school, the new teacher, everything we had prepared for… it broke faster than I could scurry around and pick up the pieces. Less than six weeks into the school year, we requested an ARD meeting and moved him to an autism program at a different school.

We are four years further down the road now. The social differences are much more noticeable at age 9 than they were at 5.

I don’t know what it is like to lose a child. It breaks my heart when it happens, because I’m not sure if or how a parent ever recovers from it. Yet I know brave souls who somehow go on after a child’s death. I can’t imagine what the grief is like.

The Unique Grief of Special Needs Parents

There is a kind of grieving that can exist as well with having a child with special needs. My child is very much alive, and I am so grateful, especially since I have witnessed his seizures and considered the possibility, if just for that split second, that he was dying.

But the hopes and dreams I had for my child change a little more each day as I watch him move forward in life. When he was just 5 or 6, I had hope that he would outgrow certain behaviors with age, that he would function better. It was that hope that kept me going. Yet here we are at age 9, and while some behaviors have improved, others have declined.

Adolescence is just around the corner and it is scary. To accompany the grief, there is its sister – guilt.

Guilt that I did something to cause it.

That I should have noticed the signs sooner, sought a different course or path.

That I should be doing more, reading more, helping more, trying harder.

That I should spend more time, more money, more effort supporting my child.

That I should experiment with a different therapy, a different drug, a different teacher, a different diet.

And whenever I try to give myself a break, cut myself some slack from overworking, overthinking, over-trying — there’s always a judgmental comment or stare to put me back in my place.

Sometimes it brings me to uncontrollable sobbing.

I can’t make the grief or the guilt go away.

My 13-year-old and I got into a shouting match one day about it. “Why don’t you and Dad do anything? Why don’t you make him behave?” he yelled.

With hot tears washing my mascara away, I argued back, “What would you have me do? I’ve tried everything! Please, tell me what to do! Tell me! Is there another book to read? Another therapy? Another anti-psychotic drug? I’d love to hear your suggestions!”

Not my finest parenting moment.

And yet, if there was one thing I’d want other parents to know, it’s to please be aware that we — the moms and dads of kids with special needs — are sometimes hurting.

Yes, we love our kids. No, we wouldn’t trade them for anything in the world. But the love we have doesn’t take our pain away. In fact, it just intensifies it. Because we can’t take their hurt away. We can try and try and try, and we do, and it might even help a little, but we can’t make always make the pain go away.

When you look at us like we are “weird,” when you stare and ogle, when you move your kids away from ours, or worse, never include our child in your child’s activities, it’s like rubbing salt into our already raw wounds.

For my son’s ninth birthday, we sent printed invitations to school. We invited the entire class of children with special needs, as well as the entire class of children without special needs. The invitations indicated that we were serving pizza and that families were welcome. We wanted to make sure people showed up. So we bribed them with free food.

Fortunately, all my son’s friends with special needs came. We have to stick together because kids with special needs don’t always get invited to that many parties.

One boy from the other class came. One.

That’s enough to just break a momma’s heart right in two.

My anxiety directly correlates to my son’s behavior. When he’s doing well, I usually do OK. When he struggles, I get worse. I’m sure it could be defined in some complex mathematical formula. All I know is that when he hurts, I hurt more.

So next time you are at the Chick-fil-A playground, or at a church picnic, or a Cub Scout campout, try looking at those kids and their parents a little differently, please? Try to remember that the parents are desperately in love with their baby.

And by being a friend instead of a judge or a finger-pointer, you might just make somebody’s grieving a little easier.

Editor’s note: This post has been updated since publication to meet our editorial guidelines.

A version of this post originally appeared on “Sheri Dacon – Lyrics for Life.”

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Originally published: April 2, 2015
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