March 24, 2014

A Home of His Own

Posted in AMT's Faves, My Take on Autism tagged , , , , , , , , , , , at 11:34 am by autismmommytherapist

Disney and Halloween 2013 015

A few months ago I had the opportunity to attend Autism New Jersey’s annual conference in Atlantic City (no, no time to gamble that day).  I happened to choose some very good sessions at the event, and was fortunate enough to hear Tom Toronto of the Bergen County United Way speak about a special-needs housing project known as Airmount Woods.

The nine unit residence is the first in the state to be designed to exclusively house adults with autism, and came about as a collaboration between Ramsey Housing Inc., the Bergen County United Way, and the Madeline Corporation. Staff from New Horizons in Autism will be working there around the clock.

The residence has nine bedrooms, all of which open into a common area. Since it was developed with input from the parents of the prospective residents the facility even includes a sensory room, which serves both as an outlet for calming the residents when they need it, and also as a recreation area.

Mr. Toronto was kind enough to bring both the plans and pictures of the housing complex that day, and I have to say I was impressed both with the attractiveness of the facility and the many ways the builders had factored in the residents’ needs as they constructed it. It was beautiful, functional, and safe, and all involved parties are hoping to open several more facilities in north Jersey in the years to come.

Frankly, it looked like a slice of heaven.

There are many issues within the autism community which are controversial, and where our adult children should live after they complete their schooling is one of them. I have a number of friends with autistic children over the age of eighteen, and I’ve seen them handle the issue of housing in a myriad of ways. Some have opted for the group home route, although in New Jersey there is an extremely long wait for an opening, so that isn’t always an option for parents.

I’ve also seen some families where one parent quits their job and stays home to care for their child. Last, and infrequently, I’ve seen families who can afford in-home care for their child. All of these options are fraught with difficulty. Any parent who chooses the group home option has to hope that their child is treated with respect and dignity, and remains safe.

Relinquishing employment to stay home and care for a child means a loss of income and embracing the role of 24/7 caretaker for decades. Those families who opt for in-home care are at the mercy of their child’s caregivers, for if the caregivers are sick or injured parents may be unable to find a sitter for their twenty-seven-year-old child so they can go to work. Truly, there are no easy solutions for families whose children will never live independently.

Trust me, I think about this issue a lot. If there were an easy answer I would have discovered it when I should have been sleeping.

When I think about the ramifications autism has had on this family (and yes, I think about that a lot too,) where Justin will live as an adult is one I come back to time and time again. I admit that contemplating where my eldest child will reside conjures up conflicting emotions within me, and is a complicated subject.

Justin adores his house, his bedroom, and having access to the multitude of toys he’s played with almost his entire life. He loves to go out for an hour or so but then is eager to come back, content to idle away the hours within the confines of his beloved home. I’d have to say if I chose to label him he’d be a homebody, might be perfectly happy living with us forever.

Of course the fact that his parents will die eventually is a slight wrinkle in that plan.

When I embarked on this parenthood journey I never anticipated I’d be responsible for one of my progeny for about fifty years (if I’m lucky, I was one of those people who had kids late.)  I’m fairly certain there will come a time when the only people I’ll want to care for are me and my husband, and I’m sure there will come a time when that will prove impossible as well. My youngest loves his brother to death, but I’ve seen the restrictions imposed on this family due to the severity of Justin’s autism, and I don’t want those limits imposed on Justin’s little brother.

The truth is on any given day the thought of what happens to Justin when I’m dead or no longer able to care for him (or both) is overwhelming, a thought I’ve had to shelve as I deal with more immediate concerns. Fortunately he’s not quite eleven yet and won’t graduate from high school for ten more years, so even in my complex “perseverationland,” I still have some time.

I have to say however that when I hear about places like Airmount Woods I feel a surge of hope, both for Justin and for our family, that a significant piece of the “post-21 abyss” might have a happy ending. I hope that with society’s increased awareness and acceptance of autism that my son will eventually find a safe haven, will be respected and treated with the dignity he deserves.

That’s my dream for him. And I won’t give up until it becomes true.

 

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April 19, 2013

Autism Awareness Month- A Celebration of Autism Advocates

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , , , , , , , , , at 9:46 am by autismmommytherapist

vince scanelli

Ed. Note:  April is Autism Awareness month, and as such provides an opportunity both to recognize the families struggling with the impact autism has made on their lives as well as to honor those who are helping to make their lives better. Among those leading the effort are three New Jerseyans who have helped countless families affected by autism. Bobbie Gallagher has been honored by Congress for her advocacy work in autism.

As Executive Director of POAC Autism Services, Gary Weitzen has trained tens of thousands of teachers, parents, and first responders throughout the state, and provided programming for families of autistic individuals.

Vincent Scanelli has fostered relationships between autistic and neurotypical children as founder of Someone Special Needs You (SSNY), and is now working to build group homes for adults with autism. Below is the third interview in the series.

Vincent Scanelli

Vincent Scanelli is the president of the non-profit Someone Special Needs You (SSNY), as well as the president of the Douglass Organization for Occupational and Related Educational Services, Inc. (DOORS) program at Rutgers University. He serves as Vice-President for Ride for Autism, a group home liaison for New Horizons in Autism, and as a Community Work Partner for the Monmouth County Chapter of the Arc of New Jersey.

Vince is the owner of the Colts Neck Insurance Agency, and has twenty-five years of expertise in financial planning as well as specializing in special needs and estate planning. He has two daughters, and an adult son on the autism spectrum.

Kim:  How did you come to be an autism advocate?

Vince:  Honestly, it was because my son was born. My family was born into autism, all we do is what we’re supposed to do for our kids. I really give credit to people who do this and don’t have kids with autism.”

Kim:  How did SSNY and your future group homes come into being?

Vince:  My son Angelo showed me the way. When he was little his mother and I wanted him to have peer relationships, but there was nothing out there, no groups. I got together with a couple of other parents and created SSNY, where kids with disabilities are paired with neurotypical teens for various activities.

We wanted Angelo and other kids to be able to get together and have some peer and social interaction, so we started doing monthly events. As Angelo has aged, our focus has shifted off into group homes. After this I’ll probably investigate work programs.”

Kim:  How did you get started with creating group homes?

Vince:  We started thinking about doing all this back when Angelo was thirteen, and he’s nineteen now. A friend of mine who is a planner knew I wanted to do a farm, and he knew a builder who was involved with affordable housing. We then connected with New Horizons in Autism, and got a grant from Marlboro, NJ to move forward with the plans.

Marlboro gave us part of their Council on Affordable Housing (COAH) funding, plus we partnered with a special needs housing trust fund (a state program). After that we would be able to purchase a house through New Horizons in Autism.

Everything was approved in July, but now the plans are stalemated, and we hope to move forward soon. We have enough money to buy a house, renovate it, and put three adults in it.

Kim:  What do you envision for the property you want to turn into a farm?

Vince:  We need about two million dollars to complete everything, but the property is ready, it has been donated by a large development called Overbrook Farms. It sits on twelve acres at the end of a cul-de-sac, has two barns, and it’s just beautiful.

It will have ten beds, two wings for five adults each. Since we have the barns I hope we will be able to do many different farming activities, raise alpacas, maybe have horses, and host events. Hopefully we’ll get the community involved in it as well.

My goal is for the adults to work the farm. I’d love to see the farm provide jobs for the people who live there, and for people in the community as well.

Kim:  What are your dreams and plans for your son over the next five-to-ten years?

Vince:  I just want him to be happy. I want him to be safe, have a good quality of life, and be the best person he can be.