Notes from a bitch – autism on my mind…

Let’s jump right on in, shall we?
My 38 year old brother is autistic, hyper-active and aphasic. I have lived my entire life with autism in the mix…watching my parents struggle to understand the undefined, listening to doctors and specialists cast blame while recommending the unthinkable (institutionalization) and enduring the stares and giggles of others who didn’t understand my brother’s public displays of difference. I have also witnessed the fantabulous and never boring force of nature that is my brother, the empowerment that can be found through advocacy and action and the strength of community.
Five years ago I moved back home to Missouri to do what I always knew my sister and I would eventually do – take on a guardianship role with my brother. Our father passed away several years ago and our mother is not emotionally able to tackle the stress and drama that is all too often a part of guardianship, so my sister and this bitch are sibling co-guardians. Our brother lives in residential treatment near the neighborhood we grew up in with two roommates that he’s known for years, so we’re very lucky.
My sister and I are now fluent in the languages spoken by the Department of Mental Health, Medicaid and social services. We balance our role as sisters with our role as GuardianAdvocateWarriors…and I try not to resent the fact that more hours are spent going to war than just being a sister.
My brother’s entire life is wrapped up in his Person Centered Plan…a couple of hundred pages of recommendations and therapies that result in funding from various state agencies and monitoring from all manner of sources. My sister and this bitch are in there too…the frequency of our visits, our likes and dislikes and the activities we enjoy together are listed in bullet points on white pages in Arial font right above our brother’s nutritional chart.
And it is that plan…my brother’s Person Centered Plan…that I can’t help thinking about when I think of autism awareness.
I wish his plan could reflect his strength…the years it took him to learn to say the few words he does or the unbelievable ease with which he communicates without words.
I wish I could make the world aware of the healing power of his smile, the cure for bitterness that is his laughter or the soothing warmth of his hugging embrace.
I am so unbelievably frustrated that I lack the creatively to make my brother come alive for people…to bring awareness of the person he is so that politicians and the powerful would want to fight to protect him and support him just as much as I do.
But all I can do is try…and then try and try again.
‘Cause my brother is autistic and every month is autism awareness month.
He’s not a cure that has not yet been found. He is more than a diagnosis and far more glorious than any definition assigned by humans.
He’s magic…outstanding…and sometimes loud as hell and annoying (wink).
This April I am aware of the caregivers, advocates, champions, teachers, social workers, activists, friends and family members that make my brother’s life possible.
And of the individuals with autism who make life extraordinary and all that we need to do to support them…