I read this yesterday on the Huffington Post, but it’s also written on the Age of Autism site. Please check it out. It gives a real, and honest voice from a parent on the Spectrum who realizes that the horizon is closer than we all think. I think there are many who share these emotions. -Ed
By Kim Stagliano
It’s been a while since I’ve spooned up a goodly dose of medicine to you. Today I ask you to open wide, say ahhh, bend over and cough all at once.
Last week I was in Dallas, Texas, speaking to a wonderful group called Metrocare that provides services to low income families with children who have developmental disabilities. I flew in a airplane all by myself. I was picked up at the airport and whisked to my luxury accommodations in a car that costs more than my annual income. I was ensconced in a room with terry robes and slippers (in case I had the desire for a massage or other treatment in the spa downstairs) and a mini-bar (didn’t touch it) and a bathtub my Bella would have sworn was her very own indoor pool. I was living large, my friends. I was even…. on TV:
We have to petition a judge to take away her rights as an adult so that we can make her medical, legal and financial decisions because thanks to her autism, she is not able to make safe choices for herself. She was a tot who could count and read before two. And THAT my friends is the reality of autism for thousands upon thousands of American families. It’s like Alzheimer’s for a lifetime in terms of safety, care and needing supervision. Except instead of an exhausted adult taking care of the “sandwich” of parents and kids for a few years or even decade of Alzheimer’s, it’s exhausted parents taking care of their adult children in the endless buffet generation of autism. Mark and I expect to take care of our girls until the day we die.
In our hearts we are proud to stand by them come hell or high water. We are mentally prepared. We will never be financially prepared. I train in a dojo up to 6 days week to stay physically prepared. We will never desert our kids. At the same time, we should never have been placed in this position. And more of us need to scream that the floodgates are officially open and the high water is coming. Fast.
There’s a spot on the form for “standby guardian.” That means the next person in line after Mark and I die. D.I.E. Whom shall I appoint? Her sister Gianna? Nope, her petition date is in 2014. Her sister Isabella? Nope. Her petition date is in 2018. Do you have a standby guardian who can care for your child forever?
I held my emotions in check as I stood in the doorway of the Probate Court judge and asked for the paperwork. When the kindly town hall staff member said to me, “We’re processing paperwork for two other —” I lost it. Tears slid down my cheeks. “I know,” I said. And I told her the names of the boy and girl who are turning 18 within days of Mia. We celebrated their 16 birthdays together at Bounce U. Three Moms, three Dads – all standing around in our socks in a jumping castle joint laughing through tears about how we should have been at the local car dealer negotiating a bulk discount on Honda Civics.
A favorite waitress from a local restaurant whispered in my ear a couple of weeks ago, “My son was just diagnosed with autism.” He has seizures and severe aggression. He’s not even three. She deserves more than what we “old timers” have put up with for so long. We need treatment. We need cure. We need prevention. Look, if you do not want prevention, treatment or cure for yourself or your own child – that is your right. I respect your point of view and I will be sure to fight so that you can have an exemption to any and all of it. (Insert irony emoticon here.)
To those parents who have forged the way before me, I say “thank you.” Barbara Fischkin and Chantal Sicle-Kira – and so many others who shine the light on a dark path for us. I have only harsh words for those in the media, government, doctors’ offices, universities and on blogs and sites who’d have us believe we are bad parents for wanting to wipe away our children’s autism to reveal the child underneath. Who think we are simply ignoring the good and the gifts of autism. My girls are gifts. My girls are good. Their autism is a noose around their necks. I’ve no patience for those who might tisk tisk and beg for acceptance and placate donors with “awareness” and fund ever more genetics studies that lead to nowhere while putting up barricades for those of us who will always have hope for the basic goals of every other serious diagnosis in America. Treatment. Prevention. Cure. Those who do not acknowledge and fight for change for the real struggle of families from coast to coast can kiss my polenta.
I cherish my Mia. My firstborn. A child who was not born with autism in 1994 and who at 18 will become a legal child for the rest of her life.