June 16, 2014

The View From Here

Posted in AMT's Faves tagged , , , , , , , , , , , at 8:32 am by autismmommytherapist

 

I didn’t want to write about this today.  I’ve been following the story for months, and truth be told it makes me feel raw.  It hits too close to home, takes me out of my comfort zone.

 

Which is why I have to write about it.

 

In the past few months two men with severe mental and physical disabilities died from choking after their transfer from the North Jersey Developmental Center in Totowa New Jersey to privately run group homes.  The move is part of a massive restructuring of care for disabled adults.

 

Their names were Richard Fornarotto, 54, and Steven Cortes, 65.

 

The state is closing the North Jersey Developmental Center and the Woodbridge Developmental Center in an effort to help improve the lives of thousands of disabled adults because this will help integrate them into their communitities.  Advocates for the disabled say the plans will unnecessarily disrupt lives, and many of the families are fighting the closures.

 

Nicole Brossoie, a spokeswoman for the State Department of Human Services, was quoted in an article by Stephanie Akin in NorthJersey.com as saying “there was no causal connection between deaths of residents and transfers from community centers.”  She also is quoted as saying that “the administration firmly believes that all individuals deserve to be cared for in the least restrictive environment available.”

 

Richard Fornarotto and Steven Cortes were under the care of state-appointed guardians as they had no living relatives to handle their affairs.  The two men had lived in state institutions since they were children.

 

They were two of the 639 residents in the centers scheduled to be moved from these centers to privately run group homes.

 

Cortes had lived in developmental centers since he was eight.  His care was supposed to include ground up food and constant supervision.  He choked on a sandwich while sitting alone in an office. By the time paramedics were summoned to the scene and discovered food lodged in his throat, it was too late.

 

Mr. Cortes died on May 17th.

 

Fornarotto grabbed a cupcake at Shoprite from a shelf and shoved it in his mouth while on an excursion.  When he started choking the group home staff members ran to get water and asked the store customers to watch him. State law requires staff must immediately perform CPR and call 911.

 

Mr. Fornarotto died on February 19th.

 

I didn’t want to write about all this today because the subject plays to my deepest fear- that for the thirty to forty years Justin will grace this earth without me something terrible will happen to him, and neither his father nor I will be there to help.

 

The quote that struck me the most from the article was from my friend Geoff Dubrowsky, a member of the New Jersey Council on Developmental Disabilities and a guardian of three people with disabilities, who said “These deaths sadden me but they do not shock me.”  He also commented that “When you move somebody from a facility where they have been most of their lives, surrounded by the people who know what kind of care they need, these results must be expected.”

 

He was saddened, not shocked.  That alone is horrifying in and of itself.

 

I wish I had the answers to the state budget issues and a way to ensure each autistic individual’s personal care requirements.  I don’t.  But it strikes me that when contemplating closures of this magnitude each person must be looked at on a case-by-case basis, with strict precautions put in place to prevent injury and deaths such as these if they are relocated.

 

I am left with questions.

 

Why did Cortes have access to solid food?

 

Why was he alone?

 

Why did staff members not perform CPR on Fornarotto in the store?

 

Why was he left unattended even for a brief time with total strangers?

 

My son with severe autism graduates in ten years.  Just a decade to go until Justin’s parents, who will be pushing sixty, have some difficult decisions to make.

 

As usual, I want to remain hopeful.

 

I admit however, when I contemplate his post-twenty-one future, the view from here leaves me scared.

 

Scared on a good day.

 

Steven Cortes.

 

Richard Fornarotto.

 

To both men and any remaining family members, I am so, so sorry.

 

Link to article in NorthJersey.com:

http://www.northjersey.com/news/two-deaths-in-privately-run-group-homes-stir-concern-in-n-j-1.1028426?page=all

 

 

April 8, 2010

A Ripe Old Age

Posted in My Take on Autism tagged , at 10:40 am by autismmommytherapist

It is my fondest wish that I survive my oldest son.

No, I’m not suffering from Munchausen’s, Munchausen’s by proxy, or any variation thereof, nor am I hoping for our collective demise to occur anytime soon. I am committed however to breathing until I’m 106, which will make my son 70, and although that’s a bit short of the life expectancy of the average white male these days, I figure that’s still a nice long life. I think I’ve got a shot at being a centenarian, as my great-grandfather on my mother’s side made it to 99 in an era where he should have been dead at fifty. Plus, there’s that daily segment on The Today Show, where Sallie Sue and Gertrude Louise smile their toothless grins at the camera, while Willard Scott reads us their inspirational advice on how to outlive your welcome. It never seems to include anything about their husbands.

So, I’m going for it, and I’ve taken steps to ensure I get there so I’ll always be around for my son. I exercise daily now, eat more vegetables, have limited my wine and chocolate (in theory), all in the name of good health. The thing is, I simply have to live beyond the parameters of good taste, because I can’t imagine leaving Justin on this earth without me. The thought, usually the last one I have before I slip into slumber each evening, is simply unbearable.

I imagine most of us, if we can still remember our names at the end of our lives, are reluctant to leave our loved ones. I’m guessing it’s because  we know we’ll be missing things, milestones with grandchildren (if we weren’t too old to have them), or the satisfaction of bossing our children around into their fifties. You know, all the main reasons we endeavor to reproduce at all.

I am certain, if I’m granted the ability to retain my saliva in the appropriate orifice and am remotely cognizant of my surroundings, that in the moments before my passing, I will not be in a peaceful place. I will, quite frankly, be freaking out. It’s not the pretty picture I envisioned for myself before parenthood, where my children would be gathered around me (my spouse would be dead, the men always go first), grandchildren would be texting their friends and hovering uncomfortably by the doorway, and some fabulous Stevie Nicks tunes would send me off to my great reward. Said reward would of course include pretty drinks, an endless array of dark chocolate, and ten consecutive hours of sleep a night without mandatory bathroom breaks.

The truth is, I feel I deserve to go peacefully, as I was yanked into the world prematurely and by emergency C-section, and I feel I’ve earned a smooth exit. For me, that means knowing Justin will not be left to fend for himself for years without his mother to protect him. It means not worrying about him being harmed in the group home he will surely reside in for at least several decades during his adulthood. It means not perseverating on who will love, or at least like, the man whom I’m certain I will always think of as my little boy, the child who despite his autism has always sought out touch, been generous with his abundant affection. It means being able to relinquish the sadness of knowing he won’t understand what dead means, and won’t comprehend why mommy isn’t visiting him anymore. It means Justin will not be required to reside alone, with no one left who cares to cross the bridge between his world and ours.

And this thought, this fear, is at the crux of the great divide between parents of children with lifelong, debilitating disorders, and those with children who do not. It is a constant companion this fear, and for me, my greatest daily challenge is just to sequester it somewhere out of reach so I can move forward with my day, and not be completely paralyzed by the implications of dying before my child.

So, wish me luck. I’m buying vitamin C and ginkgo biloba in bulk so that if I make it to 2073 I might still remember my son’s name. It’s a goal.