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Dear special needs parents: It's time to stop saying you have PTSD

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Dear Fellow Special Needs Parents,

What I am going to say is going to sound harsh, but every once in a while we all need a little dose of reality, don't we? I am here to tell you, no to beg you, to stop saying you have PTSD. As special needs parents, we do not have Post Traumatic Stress Disorder. And I've become really tired of hearing everyone say we do.

Now, before you start throwing garbage my way, hear me out.

I want us to stop saying we have PTSD because we don't. I am here to theorize that we have CTSD instead.

"CTSD, what the heck is that?"

Well, let me be honest. I used to use the term PTSD freely when talking about my issues surrounding Austen's disorder. It's what my therapist called it, after all. I used it up until very recently. Like three days ago.

But this weekend I had the opportunity to spend some time with other Dravet parents, and something one of them said struck me right in my heart. She said she hated it when people referred to what we go through as PTSD because there is nothing post about it. What special needs parents go through is not precisely Post Traumatic Stress Disorder. Instead, it's Chronic Traumatic Stress Disorder. And I am grateful I have that C.

Can you please put down that rotten apple now?

You see, we never get to "post" portion of PTSD when living with a special needs child. It's chronic because it is continuous.

We're always worried about the next doctor's appointment, seizure, or surgery.

We never know what the next call from school will bring, or even if they will get to go that day.

There is never a time when we can take a deep breath and know the worst of it is behind us.

The life of a special needs parent is a continuous cycle of anxiety and trauma. Even on our good days, we worry about when the next bad one will come. Even the happy memories are invariably tinged by fear, guilt, and stress. If you think this is a crappy way to live, you are right. But it's the cards we are dealt, and we keep dredging through because we have to be strong. We have to be there for our kids. We are their biggest advocates; it is our job to do our best to make our bad days better.

It's not always easy to dry our tears in order to hug them through theirs. Sometimes it simply isn't possible, and we cry right along with them.

Some of us go to therapy. Some of us are medicated. Some of us run, some of us live in denial. We all cope in our own ways, and no two of our stories are the same. But we each deal with it, some way or another. We each feel the burden and pain that we can't quite seem to thoroughly shake, but we're scared to admit we have.

So please, special needs parents, stop saying you have PTSD. Friends, family, stop telling special needs parents they have PTSD. Admit that it's chronic. That you aren't past it, and you're honestly grateful, you're not. Because if we were in the post-stage, it would mean that our kids are not here any longer. Some day that stage might come for us, and we will miss this C stage. We will miss those hugs and kisses, the worrying and the waking up throughout the night.

Dear special needs parents, I know our lives are hard. I know our loads are heavy. But I'm here to say I'm thankful to be living in the "chronic". Because I don't want to think about how my life will be in the "post".

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