The Undermine

This week I got one of the many episodes I get from people who have barely seen the kid during her life and have all kinds of opinions of her diagnosis, prognosis and other misconceptions they like to add on.

Case in Point: "You sure it was Autism?  I think maybe she was misdiagnosed, because she looks perfectly normal to me, blah blah blah.  I have seen kids with Autism and they don't look like her".

Yes.  I made the whole Autism thing up cause I enjoyed all the hell we've been through the last ten years and it makes for one hellava victory story and all the pity I get from people feels oh so good.

Don't get me wrong.  I love the fact that the kid is back on track and is almost unrecognizable compared to her peers, but do not undermine my last ten years.

Do not undermine the fact that from day one she was born I knew something was wrong; she cried non stop; she was probed and examined by every single emergency hospital during her first month trying to pinpoint what was wrong.  Do not undermine her hand flapping and complete zoning out during her first year of life.  Her severe tantrums and incapability to cope in public. Do not undermine her diagnosis at the age of two. Her walking on the tip of her toes, her body rocking, her screaming with each haircut.  Do not undermine all the nights I had to rip her off my body in severe temper tantrums.  Do not undermine the time she bit into my arm at the grocery store and ripped the first light layer of skin and the hell of a bruise it left behind.  Physically and Mentally.

Do not undermine the 2 psychological therapies, 2 speech therapies, 2 occupational therapies, 1 physical therapy, 1 kinesiology therapy she took weekly and the gluten free casein free diet we did the first three years of her diagnosis.  Do not undermine the nights I lay in bed debating whether to pay on time the electric bill or pay an additional therapy.

Do not undermine all the birthdays and Holidays she just sat there, blanked faced, completely unaware of what the hell was going on.  Do not undermine all the nights I lay in bed wondering where the fuck I went wrong?  What the hell was gonna happen to her if I would die?  How on earth was I gonna survive the week?

Do not undermine all the days I had to nearly kill someone at the Department of Education to get what the kid deserved.  Do not undermine the tears, the screams, the frustrations, from the kid and from me.

Do not undermine the kid's summer of 2011 where she had a horrible set back and refused to leave the house for the entire summer due to being terrified of getting sick; such paranoia that led her to vomit and want to hurt herself.  Do not undermine the fact that she takes 2 different pills to cope. Do not undermine that a couple of months ago she ripped out her eyebrows, again.

So, it is not all in my head. Lord knows I wish it wasn't.  And though I am comforted by the fact that she is better and most people that do not know cannot tell, I can.  Just today I noticed how she still cannot alternate her feet climbing or walking down stairs or get metaphorical jokes, or how she broke down in hysterics because she could not complete a simple one instruction task I gave her, which was getting something from the kitchen.

I can see it and I know how hard it has been.  For both of us.
So next time someone wants to undermine and doubt what we've gone through, I will let them know.

We have been through hell and back, and hell and back and hell and back....and there is no for sure way to know how this story ends, but it is Non Fiction and it happened to me and lots of other parents...and that is never to be undermined.

Newer Post Older Post Home