Saturday, April 17, 2010

Autism Awareness Month

Its autism awareness month and I thought I would take a little time to reflect on what autism means to me. My son is 15 and diagnosed with Aspergers Syndrome.

A is for Advocacy. Because if I am not the voice for my child, no one is. I need to be able to tell school personnel, doctors, family, friends and strangers what he needs. As he ages, it means I also have to teach him how to advocate for himself.

U is for Unconditional Love. Not just love for him - he is my world. That part is easy. Its unconditional love for the people in our lives who don't get it & make hurtful statements, avoid him, treat him like he doesn't exist, and just generally are asses to him. If you think family and friends are understanding & helpful, you are sorely mistaken. Often, they are the most hurtful of all. (I won't even go into the horrible things strangers have felt the need to say to us.)

T is for Time. Everything takes time. Time to master new skills. Time to get his mind around a change. Time to prepare for things. It took him 4 years to memorize multiplication tables. 7 years & 4 therapists to learn to ride a bike. He had not yet learned how to wash his hair properly. Time is my friend. And my enemy.

I is for Information. Thank God I have a journalism degree. Thank God I know how to research. Thank God for the internet. I never accept things at face value. I question, I research, I learn. I don't know where we would be without my endless hours of searching for answers.

S is for Sorrow. There is more of it than you can imagine. The rejection we suffer is sometimes unbearable. I've had people act like my son has a contageous disease when they learn his diagnosis. I've had people suggest I'm a bad parent. I've watched my son rejected by other children because he isn't able to socialize as effectively as them. I've seen him rejected by kids because their parents urged them to stay away from him. I've watched him fall into bouts of depression. I've seen him struggle with life. Sorrow is my middle name.

M is for Miracles. Each time my son learns something that helps him cope with the world around him is a miracle. Many of our miracles came in the form of occupational therapists with endless patience & undaunted spirits. Some came in the form of teachers who could look past the obvious intelligence (my son is near genius) & could see the learning disabilities. Some came in the form of people who didn't care that he was different, who embraced his uniqueness and welcomed him into their lives.

A is for Anxiety. It rules our lives. The world is not user friendly for a child with autism, no matter how mild a form it takes. What follows is often cruelty & rejection. That leads to severe anxiety for a child who knows they don't quite fit.

W is for Will Power. Perseverence is something my son has taught me. Never back down. Never give up. Fight even when you don't see the point anymore. He is amazing.

A is for Acceptance. He's not neurotypical. He will never be neurotypical. But he will find a place in this world where he will be okay.

R is for Respect. Too many people seem to have forgotten how to be respectful, kind, accepting. A little respect for someone's differences goes a long way toward making that person feel like they're wanted. Too little can crush a person.

E is for Exclusion. We have been left out of family & friend get-togethers, social & school events. And when we are invited, we have to decide whether its something that's do-able or something that will end in disaster. Sometimes that means cancelling well in advance, sometimes its last minute. Autism is isolating.

N is for Neurotypical. If you have a neurotypical kid, you celebrate typical milestones - walking, talking, t-ball, birthday parties, dances, dates. The milestones I've celebrated - when my son first learned personal space boundaries, when he rode that bike at 13 for the first time, when he braved going back to regular school. You have no idea.

E is for Empathy. The general theory is people on the spectrum don't have it. I say they're wrong. My son has asked to have money that goes to his Christmas gifts instead be used to buy gifts for Toys for Tots. He's even picked out the toys he wants to buy to donate - toys that he loves. He's stood up for other kids being bullied. He's helped out strangers. Yet, he doesn't always understand other's emotions or respond appropriately.

S is for Sensory Issues. Taste, touch, smell, sight and sound. Holy hell. Who knew that unexpected touch could hurt? That sound could be amplified to levels of pain? That too much input could cause complete brain meltdowns? That food texture or color could make you nauseous? Imagine living in a world where the brush of someone's hand against you can send you into a fight/flight reaction the magnitude of an unexpected car crash.

S is for Selflessness. I know more about this than I ever wanted to. Sometimes I want to be selfish. I'd like a wardrobe that isn't ten years old. I'd like to go out for drinks with friends. I'd like a job. For me, that's not to be. But I don't dwell on it. There will be time for me one day. It's just not today.

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