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It’s another lovely day in Southern California. Here it is mid-November and we’re, once again, outside in shorts and t-shirts. As I sit and type this, I hear the joyful screams and plodding steps of my soon-to-be-seven year old. He’s running back and forth, back and forth, in our very small backyard, doing one of his very favorite activities: scripting from Disney’s Chicken Little, “Run for your lives! Run for your lives!” I pause my typing to turn around and look at him go, a smile on my face. Unabashed, uncontained joy is radiating off of his tall, lanky body.
My other son is more reserved. He’s moody and anxious more often than not. But today he’s lining up the cones in an incredibly precise method for a compulsion that only he is privy to. And just like that, row of cones perfect, he hops on the Big Wheel and pedals to his heart’s content.
Our eight month old, Gracie, gives a rip roaring sting of sounds and both of my sons stop what they are doing and run over to share in her laughter. They can’t get close enough to her or kiss her enough.
My two boys that I mentioned sit somewhere on the spectrum.
How many myths did I just blow out of the water? They make eye contact. They have empathy. Their show of emotion isn’t scripted. It was never taught. They love their sister every bit as much as “normal” siblings. Hell, I think they love her more deeply – more perfectly – than a typically developing child. I’ve never seen two young children, much less boys, shower a baby with such love, attention and care.
Contrary to Suzanne Wright’s claims, our family does not merely exist. We thrive. We are loud; boisterous, even. We have loud voices, louder laughs and, yes, really, really loud meltdowns. We have good days, crap days and everything in between. Memories are made and cherished here. We have ups and downs, set backs and growth.
Is our family typical? Good God, no. Our progress is measured bit by bit. We’re still potty training. We have sometimes dangerous SIBs and aggression. Both of my sons are on medical cocktails, pills in quantities I previously would have assumed only acceptable for cancer patients.
Though they have different neurological wiring from the majority of people, my sons have worth. They have value. They deserve resources and opportunity. But scaring the American people into thinking that they are worthless, lifeless, half-people is going to little in the way of acceptance and understanding, Ms. Wright. You have a grandchild with autism. Do you really believe that he is less? That his life has less value than your typically developing family members?
Don’t misunderstand me. We still struggle mightily. This is not an easy road in that we still have to fight tooth and nail for services – just now we sit stagnant on a waiting list for ABA. I met last Thursday with a lawyer to discuss my oldest son’s IEP and behavioral plan. Although currently decreasing, our oldest’s SIBs and aggression have resulted in pain to himself, others, and I’ve needed to replace several pieces of furniture. Our journey is at times rocky, but the scenery is beyond beautiful.
Now I understand that the squeeky wheel gets the grease and that you need to make autism seem really big and scary for Congress to listen to you. And, equally true, for some of our families, autism is really big and scary. Families do go bankrupt. Moms and dads get sick from stress and constantly being on guard. Our lack of sleep pushes our bodies and minds to their limits. But do not, DO NOT, claim to “speak” for every autistic experience. Not when you constantly deny the voices of the self-advocating adults. Not when you dismiss autistic experiences like our own. Not when you just play up to the fear and stigmas.
Slowly but surely, Ms. Wright, you are ensuring that the majority of the autism community stands up and says that Autism Speaks does not speak for them.
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A site to discuss and learn about TRICARE Philippines Policies and Issues that are often times implemented in secret by the Defense Health Agency (DHA). Policies that result in payments at about 7.7% and 3.8% of what they should be or $328 per under 65 person instead of the expected $4,261 & $328 per over 65 person instead of the expected $8,650.
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This WordPress.com site is about the ups and downs of life and autism.
Retired Pediatric Speech-Language Pathologist with 28 years experience …. still posting about apps & AAC stuff.
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