Saturday, September 10, 2011

Did you grieve?

Did you grieve the diagnosis of Autism? I came across this post the other day and it set off a firestorm of comments on Facebook. Here is the column: Grieving Autism? Not so much

I can honestly say I did grieve the diagnosis and still am. We are approaching the 1 year anniversary of Avery's official diagnosis. I am more hopeful today than I was a year ago but I still feel as lost as I did a year ago.

I had my moment a few months ago about how I wondered how it was to have a normal child. I was walking out the door and my father made the comment about "when is she going to talk?" He didn't understand that all the play therapy was actually helping her. I cried when I took her to therapy because i just thought while driving there "What would it be like to have a normal child?"

I literally had no idea. Our first child had a global developmental delay. So she had therapy 4x a week and then her sister entered the world of therapy and that's where our world turned. My world for the last 3 years has revolved around 1 child or another in therapy. I wasn't prepared while they were in utero if they were going to have special needs. Physically everything looked good. Neurologically it was a different story and only one that could be told later on.

If you have the tests or ultrasounds and it shows a positive and not a false positive for chromosomal abnormalities or a physical abnormality and they tell you ahead of time you start the process of how to process it all much earlier. It also destroys or eats away at the joy of your pregnancy. I had that with Avery. Half way through I was termed "high risk" having high amniotic fluid that was suppose to lead to neurological disorders (never mentioned Autism) or extra digits or less digits. So while the last half of my pregnancy was spent in anxiety of whether or not she would come early or show the dr's wrong (she was indeed early) I also never thought about Autism during that period. I just wanted to make sure she was there. Breathing. Alive.

So once we got through the initial "She's here!" "She's physically all there!" we didn't really think to much about anything else til later when we started to see the changes or not meeting the milestones.

Then you are sitting in a DR's office and she hands you a report. Instead of reading through it all you flat out ask, "Is she on the spectrum?" And the reply is "Yes." Your world stops as you know it. The DR. starts to talk about the report and how she see's your child's future and it's a big blur. Because it's A LOT of information to absorb at one time.  Trusts? Maybe mainstreaming? You don't get a moment to swear, have an out burst, to hit something. You cry a bit and continue on with your appointment.

Then you walk outside and it's a beautiful early fall day. The sun is shining and it's still warm outside. You then feel like you need to do everything NOW.  NOW.  NOW. So you either process what has happened or you put it inside and you don't deal with it until later. For the last year I've been thinking of all of the things we have lost. We physically didn't lose her but we did loose our vision of her future. She still is a happy, cuddle bug who is a big sweet heart. That's never been lost. But what's been lost is deep inside her. We know she knows whats going on around her. We know she has the words. Why they are not coming out of her mouth infuriates me to no end. Why she screams non stop some days I have no idea. Why she hit's her head we know is out of frustration.

All of these things are a part of lives today. If you ask me if I would like a day of the Avery that doesn't have Autism, yes, why yes I would if only you didn't take her away again. You can't barter like that though. That's just not how life is. It is what it is. The word Grieve may not be a wonderful choice of words for someone who has made it through the other side or someone who views Grieving as part of death and never coming back but for someone who views Grieving as losing parts of your life and moving on then well I'll take it for what we've been doing the past year and I won't be made to feel ashamed by doing so.

1 comment:

  1. Of course I grieved. Everybody grieves, and if they tell you they didn't they're lying to you or to themselves.