Every year the Ohio State Fair marks a monumental moment for us… the home stretch of summer break.This year was no different… until we arrived there and then the twists and turns of the day lead to an unexpected turning point in our world of autism…
We were greeted by a procession of dozens of motorcycle cops blowing their horns with flashing lights… what was the big deal??
Sahara is obsessed with Santa (and I mean that literally). The past 3 weeks have been riddled with Christmas Carols, crafts and plans about how we now have a fireplace to accommodate The Big Guy entering the house Christmas Eve… never mind you it is the dog days of summer.This has left me wondering why we tell our children this lie.
Now once upon a time I thought this was a magical right of passage.
Today? I see how my older NT daughter is completely upset that I had lied to her all of these years. And although I know we shall get through this, it leaves me wondering how we will address this exaggeration of the truth to our autistic daughter. The not so well thought out excuse, “The spirit of Santa Clause lives in us all as long as we believe,” will certainly not suffice to my concrete thinker.
I have even started saying to her, “What if Mommy is Santa?” And she looks at me with a ‘I don’t understand’ expression and moves on.In fact, these are one of those moments in parenthood that you regret bringing mainstream delusions into the world of autism. I suspect that this will be a very difficult situation to overcome…
Anyways, let’s get back at the State Fair.
Each year we have a previous year’s experience to help measure our progress.… and HUGE MILESTONES were evident.
From being able to ride independently on rides as we stood on the side lines looking on just like the other parents … to her exclaiming that she wanted to go on the Big Yellow Slide and The Caterpillar (junior roller coaster). What is so amazing about that? She asked for them before she saw them… which means she not only remembered the fair from previous years, but had the words to tell us.
Having more and more words coupled with receptive communication has been our biggest growth this past year (especially the past several months).
Words were sandwiched between every activity… but there we moments that reminded us that autism was still in our midst.
… like the time she refused to stop playing with the squirt guns at the water balloon game… the Carnie yelled, “hey kids if you aren’t going to play, stop touching the guns.” Of course Sahara didn’t understand his words muted over the back ground noises… so I quickly come to her defense, “she has autism and doesn’t understand you”. He huffs away, we move on.
…. or the time she ran across the bridge on an obstacle course and that Carnie yelled at her to stop running and when she didn’t he grabbed her arm and told her to go back and walk the bridge or she wouldn’t be allowed to come back on the rest of the day. I am hot, exhausted and snap, “she has autism”. Then he gave me a look like ‘make her listen lady or else’ so I add, “…. I am doing the best I can.”
A few weeks ago I caught myself on numerous occasions saying in reference to her, “She has autism”, as a defense against perceived odd, annoying, or challenging behaviors. I wondered what message that this sent her? I remember thinking that I didn’t want her to use this label as an excuse and I didn’t want her to identify herself solely on this label and so I vowed to shift my language and beliefs. I obviously didn’t do very well with the oath at the Fair.
Each time this ‘defense’ came out of my mouth, I was left with a feeling of regret in my heart. And found my internal dialog was desperately trying to find an alternate way of responding (not reacting) to others frustrations, judgments, and demands on my child who IS EXCEPTIONAL BEYOND THIS LABEL!!
I realized at the fair that this is so much more about me than her… [or so I thought]. My daughter is good at teaching me huge lessons in life… patience, faith, trust, compassion, endurance, etc. This day was no different…
After using the bathroom, she washed her hands. As I looked down I knew that she was going to tear her wrist band for the rides off as soon as I saw it get wet… there was no convincing her to keep it on. She has sensory issues around water… so I knew the wet band was irritating her wrist.
Her dad and sister took off to go ride the big rides while we headed to the other side of the park to see if they would issue a new tag.
Honestly, I didn’t want to shelve out another $22 for a new wrist band and was panicked that they wouldn’t cooperate with my request. We arrived to the tent which was empty all except a middle aged man sitting at a table. He looks up and asks what I need and I blurt out, “My daughter has autism and tore her wrist band off when it got wet, can we get a new one?”
Just an understanding nod of the head.
He has her sit down and he repairs the band and puts it on her ankle over her sock to prevent further skin irritation… pretty sure he has done this before or perhaps he has a special child in his own life.
I am taken by surprise when Sahara starts to sob as we are walking out of the tent. I get down on my knees and ask why she is upset. Her answer punches me in the heart…“AUTISM”… I embrace her and we cry for a moment together… “I SAD!!”
“Does autism make you sad?”
A very clear articulate, “YES!”
“Do you want me to stop saying you have autism?”
She looks me in the eyes and says an even more articulate and clear, “YES!!”
I am floored… I don’t know if I should laugh or cry. On one hand, I am relieved she knows about the autism. Yet on the other, it is my own damn sense of insecurity and my Mama Bear reactions that most likely resulted in her awareness…. and she doesn’t like it… in fact, she said it makes her sad.
I always wondered when we would have “the autism discussion”… I never pictured it happening organically at the Ohio State Fair. But there it is…. “Yes, Sahara, you have autism… but no it does not define you. You are, can do and will become anything you so choose.”
So there it is… My 7 year old quasi verbal child just reminded me why I educate others that our kids are exceptional beyond labels… I have gone introspective and decided it really isn’t anyone’s business why my child has quirks… and really that IS my issue not hers. In her own way, she made it quite clear, that she is not defined by autism… she is Sahara Grace.And so, I move forward into our new chapter of our newly defined world within autism.