We have come a long way as a family since Finn was first diagnosed with Autism at 19 months old. I wrote about my feelings here on this blog. I laugh at myself now when I look back and read that post. It's almost embarrassing. Six months later at Finn's follow up evaluation, things really began to sink in for me. I wrote about my struggle with the slow realization that Finn had a disability, and how painful it was for me to come to terms with (you can read that post here.) I often think about that last post, about how I could neither identify with the parents who fought against autism, nor the parents who celebrated it. I just wanted to run from it. I just wanted it all to go away. I just wanted my baby to not have to work so hard for every damned thing.
I wrote that post nearly two years ago.
Since then, I can proudly say that I have floundered my way into advocacy. Instead of running from Finn's autism, I am fighting for him. Fighting for his rights as an autistic individual, fighting for an education and support system that works for him, fighting for more acceptance in the community, fighting to defeat stereotypes, and fighting for a future that he can be proud to be a part of.
But two years ago, like any parents who receive a medical diagnosis for their child, we went into "fix it" mode. We tried many different therapies for Finn.
The regular stuff- speech, occupational, physical therapies, Hippotherapy (horseback riding), aquatherapy (water therapy), ABA therapy, Floortime, Exclusion Diets, and more. I even went so far as to make an appointment with a DAN doctor (Defeat Autism Now), and didn't go through with it solely because the upfront cost of the labwork we had to do before the doctor would even SEE Finn was astronomical. We went to the beach instead. I will never regret that decision.
We learned a lot with Finn over the past couple years through all of these therapies.
And to sum it up, it's this: Finn is different. He will always be different.
And that's okay.
Finn really enjoys therapies that help him communicate more efficiently and participate in daily life more effectively. He has learned to ride a bike, climb the monkey bars, and do the balance beam in physical therapy. He has learned to feed himself with a spoon, draw with a pen, drink from a straw, get dressed, and give high fives in occupational therapy. He is learning to communicate with an Assistive Technology Device in speech therapy.
He has not learned how to not flap his hands when he's excited.
He has not learned how to consistently look everyone in the eye when he's spoken to.
He has not learned how to speak with his voice.
He has not learned how to not be autistic.
And we have learned that that's all okay.
Accepting that Finn is Autistic doesn't mean that we have taken the lazy route.
It doesn't mean that we don't do therapy, or that we don't challenge Finn.
What it means is that we accept that Finn is a human being like any other human being, with individual needs and desires, and that means loving all parts of who he is.
Because without autism, he simply would not be our Finn.
We choose therapies now that help him be the BEST him, not a different him.
Finn has his difficulties, but in many ways I don't find them more difficult than I find his brother Cole's difficulties.
Cole is 19 months old and is developing typically.
When we take Cole to the mall, he never wants to leave the play place, will probably cry for a new toy in the toy store, and will eventually be bribed into submission with a milkshake.
When we take Finn to the mall, he never wants to leave the fluorescent "Sears" sign, will probably want to ride the escalator 10 times, and will eventually be bribed into submission by letting him run up and down the hallway five times.
It's not harder, it's just different.
What IS harder is forcing Finn to play in the play place when he really just wants to look at the Sears sign, or making him look at the toys in the toy store when for him it's more fun to ride the escalator, or giving him a milkshake as a reward when he hates milkshakes. We don't force him to do the things that typical kids like to do because he's not typical. But he is still, above all else, just a four year old kid.
It is not by accident that I became an advocate for Finn. It's because of the voices of many autistic individuals who I have looked to for advice and perspective. To name just a few:
the book "The Reason I Jump"- by Naoki Higashida
the blog "Emma's Hope Book"- by Emma Zurcher-Long
the blog "Ido in Autismland"- by Ido Kedar (to date the person I find most like my son)
the people at the Autism Self Advocacy Network,
and my cousin Blair, who wasn't diagnosed with autism until her mid twenties, but despite her many challenges, was intuitive enough to notice that a 9 month old Finn didn't like his hands wiped with a wet cloth but didn't mind having them wiped with a dry cloth.
She was my first window.
People who understood Finn, who identified with him, who thought like him, and had the language to explain him to me.
These people made me less afraid.
They made me realize that my he-man mama energy needed to be focused not toward fixing my baby, but toward fixing how the world perceives him.
Finn is fortunate to be growing up at a time where he has these fierce self advocates fighting for his rights and the rights of others like him.
He is fortunate that he goes to a school where- if he has trouble sitting still- his teachers recommend regular breaks to climb stairs and jump on the trampoline- instead of restraining him.
He is fortunate that he has family and friends who love him unconditionally, with cousins who include him and acknowledge him consistently regardless of his ability to appropriately respond. (they are amazing).
But there is still much to be done.
He is still growing up at a time where innocent autistic kids like Neli Latson are imprisoned for almost five years, simply for waiting for the public library to open, and being unable to respond to police and trying to run away. Read about his case here and recent conditional pardon (thank God!) here.
He is still growing up at a time where autistic children are murdered at the hands of their own parent, and the media portrays these murders as justifiable and inevitable due to the "burden" of having a disabled person in the family. In the past five years alone over 90 autistic children were murdered by their caregivers. You can learn more about the Disability Community Day of Mourning here.
He is still growing up at a time where school districts throughout our nation disproportionately refer special needs kids to cops and juvenile courts. Read about the recent arrest of an autistic sixth grader here.
He is still growing up at a time where the majority of non speaking Autistic adults are unemployed, don't have resources available to live independently, and lose their supports after high school.
Historically we have had to fight horribly sad battles to prove that people of different races are equal, that people of different genders are equal, that people of different sexualities are equal, that people of different religions are equal. We are still fighting these battles.
And now we need to prove that people with different neurologies are equal.
We need to prove that segregating individuals with disabilities from their typical peers and giving them a "special" education is not acceptable.
We need to fight for inclusion and acceptance for all human beings, including human beings with disabilities.
Finn is one of the most wonderful and fascinating people I have ever met. I know that doesn't count coming from me since I'm his mom. But I really think that across the board, there is always so much more to someone than what meets the eye.
I hear a lot of moms say that they just can't wait for the day for their nonverbal autistic kid to say "i love you", and all the therapy and tears are with this end goal in mind.
But I have never once not known Finn that loves me. He tells me every single day.
It's in the way his face lights up when I pick him up from school.
In the way he wraps his arms around me to snuggle before bed.
In the way he takes my hand and puts it on himself to say "hold me mama".
In the way he takes his little finger and touches my eye as he looks right at me and waits for me to say it. And I do every day.
I love you, Finn. I love every single part of you.
We won't ever stop fighting for your rights, for your voice. One day we'll get it all figured out and you'll be fighting right along with us, for yourself, and for kids just like you.
Thanks for being patient with us.
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