This post was originally published at http://katscafe.org/2012/04/30/kats-cafe-to-i-wish-i-didnt-have-aspergers-autismpositivity2012/ and is reprinted here with permission from the author.
Kat’s Cafe to ‘I Wish I Didn’t Have Aspergers’: #AutismPositivity2012
Autism Awareness in Action, A Positive Message about Autism for #AutismPositivity2012
It’s hard dealing with autism in the family, and I won’t lie, there are days when I am overwhelmed and out of sorts with too many questions asked repeatedly, (no desire to do) potty-training, too many doctors, and not enough time or therapy to do everything I want to for my children with autism.
But there is one thing I do know – I wouldn’t trade it for the world. As I struggled to write something to “I wish I didn’t have Aspergers” I realized that I was, in effect, writing potentially to one of my own kids, or to Jim.
And as that thought hit me, I realized the greatest fear I have for my boys, all of them, is that they’ll give up on the world around them, give up on themselves, give up on the hope of a future that seems so very far away today.
My message to “I wish I didn’t have Aspergers” is this: DON’T GIVE UP
Don’t Give Up Yourself to Autism
Everyone has a different idea about what autism (or aspergers) is, how to diagnose it, and whether one therapy works better than another, or one diet works better than another.
But at the end of the day, how you react to having autism isn’t found in how you treat your autism. Sometimes, in the ongoing struggle of every day trials, of things that don’t make sense and never will, or situations that are uncomfortable if not downright impossible to deal with, it’s easy to lose sight of the fact that YOU (or your child) is an individual FIRST. Autism is always second to who YOU are where it counts.
Don’t let the stigma of the diagnosis, the thoughts of the uninformed, or your own depression, let you lose sight of that — YOU matter. Not the diagnosis. Not the label. Not whether you make great progress or still struggle. YOU. Let yourself shine!
Don’t Give Up Hope
I don’t know if you are reading this as another parent, overwhelmed with the diagnosis of ASD, as a young adult (or mature one) new to the late diagnosis of Aspergers, or as any other person struggling to understand the diagnosis … hating it, even.
But you shouldn’t give up hope. Not hope for a cure – because I don’t believe in cures for things that aren’t a disease (autism is NOT a disease!) – but hope for something better.
Therapies, dietary intervention, new understanding of neurological and environmental causes – these are being discovered, used, and are successfully helping many with autism spectrum disorders every single day. With time, and effort, you can make the kind of progress you need to feel like you fit in with the rest of the world.
Or course, fitting in isn’t the same as being yourself, always. So please, don’t give up hope that YOU can be YOU, an extraordinary person with something magnificent to offer this world. Keep hoping that the rest of the world will see you as the unique and amazing person that you are. Because I can guarantee you that others already do.
Don’t Give Up Your Determination
Over the years, a lot of doctors and therapists and teachers and friends, and yes, even family, have told us that our boys couldn’t succeed. That they wouldn’t be able to walk. To talk. To learn. To be … to be as amazing as they truly are. It was hard to hold on to our determination that our boys would NOT be the equivalent on any diagnosis or prognosis, but that they could always be more than some words on a page.
That determination wanes sometimes, when therapy doesn’t seem to make the progress we’d like … but it’s there.
Determination is what helps dry the tears and quiet the fears; it’s what is left behind when others try to dictate who you (or your kids) will be; it’s what you hold onto when you are tired and scared and lonely, when the world seems overwhelming and confusing. Determination will see you through the storms in your life; and help you embrace them and rise above them. Determination is your friend. Never give it up.
From a Mother to Another Parent
If you are the parent overwhelmed and unsure, caught up in too many of the negative things about dealing with autism … give yourself permission to be overwhelmed. Give yourself permission to be unsure, to be scared, to want to give up … but use that emotion.
If you can’t redirect those kinds of emotions, they will overtake you, and they will strip your determination from you. Your child needs you to give them that hope, that determination … the world is a scary place when they are trying to find their way as well. When you are overwhelmed, they are right there in the thick of it with you.
Learn to embrace the positive, the good, the unique, the loving, the innocent, the mischievous … and remember that these are part of your child as well. Help them to see that, and you will appreciate it too.
Don’t give up.