I'm getting old. I can see gray hairs hiding in my tangle of brown curls. My laugh lines don't seem to vanish when I stop chuckling. And while my bustline isn't truly sagging (I never could take that pencil test) it does seem to be a bit, well, diminished. If good things come in small packages, I must be great.
I could probably use several shots of Botox to fill the furrows in my forehead. Don't get me started on my belly button. I think cosmetic surgeons refer to it as a "winky" after the droopy shape that follows three pregnancies. Fortunately, my lips are still full so I'm off the hook for the collagen injections. Small favors.
Even if I did resort to cosmetic surgery to try to fool the world, and myself, I know that I'm growing older every day. And one day, I'm going to become dirt. Dead. Gone. Worm food. Today I got a slap in the face reminder of what that will mean.
A friend named Ray, whose own son Eric is in residential care because of his autism, sent me a copy of this obituary. It catapulted me into my future.
Leila Simon, aided son, state's disabled
When he was growing up, Leila Simon's son did not speak. He could not dress himself, and he wandered off when no one was watching.
The daily struggles of David inspired a lifelong mission for Ms. Simon, who headed a statewide parents' group that advocates for New Jersey's mentally disabled population and was appointed to serve on the state's Council on Developmental Disabilities.
Leila Simon, age 74, died and left behind a son who sure sounds like he has autism. Her obituary made me deeply sad and worried for a man named David Simon, whom I do not know. A child who no longer has a mother to look after him. But the obit also shocked the heck out of me as I read:
She told The Star-Ledger that although David Simon had appeared a normal, healthy baby when he was born, he had suffered an adverse reaction after a vaccination when he was 18 months old.
My God. Was David Simon a healthy baby whose vaccines induced his disability many years ago? And we're still having the debate how many years later? With now thousands of children diagnosed with autism? I find that so disheartening.
This obituary added a few gray hairs to my head. And worries to my heart. Who will care for my girls when Mark and I are gone? They have no typical siblings. Can cousins who barely know them be expected to step in and assist them? Not realistically. Their autism has wiped us out financially already. We won't have money for private care for three adults for a lifetime. My beautiful girls will be at the mercy of the state.
Do you think we parents of kids with autism are loud and unruly now? Are you tired of us raising Cain about our kids' plight and seeking cures and treatments with a fervor that borders on obsession? Want us to please be quiet and just go away? Wait until we die, and leave you to care for our precious kids. It's coming. I can see the future. Kim Stagliano, 86, Leaves Three Autistic Children Behind.
Rest in peace, Leila Simon. Live in peace, David Simon.
Follow Kim Stagliano on Twitter: www.twitter.com/KimStagliano
Lately I've been thinking about ways in which the community could try to form care facilities for just this issue. Of course, the insurance laws would have to be adjusted to pay for it or else everyone would have to start paying into a fund of some sort and raise money (an area I'm clueless about).
However it's done, I think something better than what exists now will have to be invented. The late Loren Mosher, long-ago head of the NIMH before the drug companies took over, came up with an excellent, humane and economic model for care called "Soteria" and he wrote a book by that name. I would like to see such residence facilities formed for disabled adults and maybe for some of our children if we can't fully recover them.
If something like this was ever created, the whole NT world of retirees-- disabled or not-- would be jealous, since hospice care for the elderly in the US can be a horror show as it is.
You and your family are a tremendous inspiration. Your legacy is far greater than your headline. Whenever I am discouraged or exhausted, I think of you, your husband and your lovely girls - and how you keep fighting to help them every day. Your writing has so much power. I am constantly quoting you to friends and family... you keep us focused as we fight to save our kids and you do so in such an amazing way.
As the Autism crisis grows, hopefully more attention and resources will be devoted to our kids who currently struggle and what their futures hold. They will need qualified help and support, as will the families who love them. It is overwhelming. My 4 year old son who has Autism has his "NT" sister, but it is daunting to look at my five year old daughter with expectations of her becoming her brother's life-long caregiver. We will all need to come together and somehow support each other as a community. Of course, that is easier said than done as we all scramble between therapies, classes, research and trying to pay for it all.
In this frenzy, your grace and wit are a gift who all of us who are fortunate enough to read your words.
Emily
The charter school and summer program, which have served about 1,700 children, are being copied by groups across the country, Torisky said.
Through all this, Cope remained a consistent and humble volunteer, quietly helping out at events.
"He was an incredible, incredible presence. Always," Torisky said. "We just plain feel lonely with him gone."
"This was his income. ... He never needed any notoriety, never wanted any attention brought to all this," Champ said. It was about his son. "Danny is the center of Myron's universe. He was completely dedicated to Danny, to his care, to his progress."
That dedication led him to help found the autism society along with Dan Torisky and others.
"Myron got us our first grant. It was money to buy stationery. That's what started the Autism Society of Pittsburgh," said Torisky, the autism society's CEO.
Cope helped start the Pittsburgh Vintage Grand Prix, which has raised $2.3 million for the society and Allegheny Valley School, headquartered in Robinson. He convinced Alpha Phi Omega fraternity chapters at the University of Pittsburgh and West Virginia University to start the annual Run to Pitt football relay in 1970, during which fraternity members solicit donations for the autism society, Torisky said.
Cope left mark on autism treatment
By Mike Wereschagin
TRIBUNE-REVIEW
Thursday, February 28, 2008
Behind the exclamatory radio persona, more deeply seated even than the graceful sportswriter, lived the quiet philanthropist who, in the name of building a better life for his son, forever changed autism treatment in Pittsburgh.
Myron Cope and his late wife, Mildred, helped found the Autism Society of Pittsburgh and organized dozens of charity events to benefit the Allegheny Valley School, where their son, Daniel, lives. Cope, 79, died Wednesday morning at a Mt. Lebanon nursing home.
One of Cope's best-known charitable acts occurred in 1996, when he donated to the school the copyright to his Terrible Towel. In more than 11 years, towel sales have generated about $2.2 million for the school, which serves developmentally disabled people, said CEO Regis Champ.
"He really knew what he was doing. He wanted to leave a legacy for his son and his son's friends," Champ said.
continued in next post ...
The future is what I fear each day when I awaken and each night as I fall asleep.
Who will be me?
Teresa/red
What will happen to my son when my wife and I are gone? Do I leave him in care of the state, the very same people who caused his condition? His older sister is also on the spectrum, but she is very high functioning and will more than likely live a normal and productive life. Would caring for him be fair to her if she decides to have a family? My youngest daughter is the only one not on the spectrum (we spread out her vaccines, and she's normal. Coincidence?) What about her life? I know that my 2 wonderful daughters would more than likely take him in with no second questions (my oldest is so sweet with him...the doting big sister), but can I ask them to?
This is a chilling normality for parents like us. This is something we face every day. It keeps me up at night thinking about the "care" that all of these severely autistic children will receive in government sponsored homes.
God, I've got chills now....
One of my most cherished illusions is that if only Americans realized children are being injured by vaccines, then the cavalry would arrive to save them. But sadly assistance for our children is blocked by politicization. Libertarian philosophies of self-reliance fail, Republicans' compassionate conservatism may not translate into real action, and Democrats' social programs remain underfunded.
A few years back a family member commented on his mother's challenges with Alzheimer's disease by uttering the most passive sentence I've ever heard: "Someone should do something." That's where too many people are stuck -- waiting for "them" instead of empowering themselves by saying, "I must find ways to fix the problem."
In my family, any unneeded goods that aren't worn out are donated to ARC, which in our state has started a lifetime care program for vulnerable adults. That's a tiny start. So much more to do.
We all need to write, phone and visit our legislators. Keep banging pots outside the Capitol until our children get what they need. We are the cavalry, and we're in it for the long haul.
Thirty four years later-the government is still sitting on its big butt contemplating its monetary ASSets.
Maurine Meleck
I know the heartache of trying to grapple with my own son’s future – I can’t even begin to imagine what that must feel like x 3.
And your “babies” are so beautiful – which makes it even harder as a mom knowing that they will be at the “mercy of the care givers” (likely still earning minimum wage) who may not necessarily be the best equipped or trained to provide them the specialized care that they need.
In other words, “you get what you pay for” and I'm afraid that unless society “wakes up” and realizes the need to start valuing these children now and making the necessary adjustments, our children may end up in the hands of some pretty shady characters in the future.
Kelli
PS….Regarding bustlines and aging….for some weird reason, that department has gotten better for me as I’ve gotten older – go figure!