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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4 Comments »

  1. May your dream come true ~ I know it will because you always make the best come to fruition! ♥

  2. kenlininger said,

    Wow. How poignant for me right now as I ponder our daughter’s future. She is much younger than Justin, but her situation is a bit different. We know there will forever be permanent deficits from her epilepsy surgery, and a potential still exists for her to battle seizures in the future despite her positive progress to date. And now, the ASD…

    As a SAHD, dedicated to her care (and the other kids too), all of the “what will’s” and “how will’s” weigh heavily on my mind. All the effort invested into estate planning an retirement planning now hugely complicated by the potential financial burden of her care. Providing for her in every aspect while also being somewhat fair to the kids too, and my wife….

    It is all so complex and mired in the unknowns.

    Great post today and I feel your invisible pain on this topic.

    • Thank you, what an eloquent response. The thing that gets me through the day is knowing my son is truly happy, and that I’ve got time to plan, plus the wisdom of many parents who have gone before me. I’m certain your girl is in good hands. Thanks so much for reading!

  3. Martha M said,

    My older brother is severely autistic. I also have a nephew with autism.
    You said ‘ 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.’
    Do not underestimate the strength of your other children. My parents are gone and I always, from a very young age, said I would care for my brother when they were gone. I never considered it an imposition, my niece feels the same way about her brother. It is what family does for family. Now with that said, I do not care for him in the same way our mother did, I care for him as a sister does and should. No one can take the place of a mother. My parents raised us with a strong sense of family. Since you seem to do that already, you may be surprised and find that your other children will ‘step in’ with out having to be asked or imposed upon. I’ll repeat what I said earlier… Do not underestimate the strength of your other children. I speak from experience we siblings are special too.


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