Friday, February 02, 2007


The process of fully comprehending what it means to have a special needs child is similar to the 5 stages of grief:

1) Denial
2) Anger
3) Bargaining
4) Depression
5) Acceptance

All grief stems from loss. As a parent of a special needs child, you have lost the future you mapped out for your child. You have lost the dreams you carried for when you became a parent, and the things you wanted to show and teach your child. You've lost membership in the "Typical Child" club. Your friends do not relate. You parents do not relate. Only other parents with special needs children relate, and that is the LAST club in which you wanted membership.

You move around and around in the five stages, in and out, skipping, repeating, randomly. Each stage has its up side and its down. Even after acceptance has "occured" there are days you slip back into the others. You never know what will trigger a backward slide, it's usually not a big deal in and of itself, but significant in that it startles you into the reality that your child is "different" and "different" can be great, or it can totally suck, depending on the attitude-of-the-day.

I think grief is circular, starting big at the bottom, getting smaller as it goes on/up, like a child's stacking rings. It takes a long time at first, until eventually you can zip through the 5 stages pretty quickly, and they just aren't so "big".

I'm no saint. It's nice that some feel that I am, but I'm not. Period. Special needs parents aren't special. We didn't sign up for this. We wouldn't have thought we could handle this, either, but we weren't given a choice. I hear so many people say, "I couldn't have done it," to which I must call "bullshit." None of us know what we can or cannot handle until we're faced with it. If there had been some pre-natal test to warn me all this was coming, I don't know what tough choice I would have made. I can tell you now, though, that if God said, "Here you go, I'm trading you now for a perfectly 'normal' boy," I wouldn't take that trade. No way. Wouldn't wish this parenting challenge on my worst enemy. Wouldn't trade it with my best friend.



Dawn said...

I hear that !

Jerri said...

As a mother who faced some pretty serious parenting challenges of her own, I can tell you that while it's true you may not be a saint or perfect, you handle the tasks you've been assigned with dignity and humor and a kind of grace that few of us can muster.

I sometimes look back at things from The Boy's younger years and wonder how in the hell I survived. I was there and I don't know how she (the younger me) did it.

Strength arises when it's needed. Your strength is to be admired. Your grace, too. Ditto with the humor. And that's no bullshit. Not even a trace.


kario said...

I'm with you, Carrie. All of the challenges given to us have only served to make us who we are to this point and I, for one, think you're truly terrific the way you are, so thanks to Rojo for helping shape you that way.

Kim said...

Your deep, genuine honesty is as powerful and inspiring as your sparkling humor. Maybe it took Rojo to get you here but, saint or not, you are amazing! Not because of what you've survived and accomplished as a special needs parent, but because of the woman you are today, in all her complexity.

JessPDX said...

Wonderful post, it says so much about all this. And almost everyone can relate to the stages of grief.

Yes, I like this part:

"I hear so many people say, "I couldn't have done it," to which I must call "bullshit." None of us know what we can or cannot handle until we're faced with it."

Very true, very well said.


Anonymous said...

When is your book coming out and when will you be on Oparh to tell the world about Rojo?

Prema said...

Ditto anon. You are a teacher, Carrie, and I sense you stepping into it with all your teachers (and wild women) at your back.

Nancy said...

If God leads you to it, He will see you through it. You are special and He knew that!

Told my son recently that if I had a "do over" with him, I wouldn't change one thing. He was angry and said not even my ADD? How could you want this for me?

I would love to take away the obsticles but to change one gene would leave me a much less amazing human being.

You and spite of the trials... a perfect match!

Terry Whitaker said...

Every word so perfectly said.