August 29, 2020
Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, group home at 1:59 pm by autismmommytherapist
It is with great delight that I will announce to all of you that I have some news. No, I haven’t won the lottery or cleaned out my garage (hopefully done before I move someday). I have yet to open my new pressure cooker I got for Christmas, and my “losing the Christmas pounds” regimen has yet to really take off (fingers crossed on that one).
No friends, my news is this. I have a new project.
I’m going to try to help create a group home for autistic adults.
No, I’m not doing this on my own, and I expect it to take years. I will be working with some wonderful parents from SSNY (Someone Special Needs You) (ssny.org) to raise money for the home and get land donated by developers for the project.
Do I know how to do any of this? Nope. It will be a learning curve for me, but a really important one.
My eldest son Justin is seventeen, non-verbal and severely autistic. Someday he will need to reside in a group home, as I do not anticipate for many reasons he will live with my other son one day. I am confident at some point Zach will work and have a family of his own, and it would be very daunting for him to have his big brother reside with him. Plus, in my “plan for everything” mindset I would worry about what would happen to Justin if something were to happen to Zach that would prevent him taking care of his sibling, so this seems the logical plan.
Oh, were it that easy.
I have to admit I am conflicted about the group home plan, and probably always will be. I worry about him being abused, although to tell you the truth that could happen if I kept him home with me until the bitter end and had in-home care for him.
Hi being hurt is one of my worst nightmares.
The other reason I am conflicted is that if I’m brutally honest with myself, I will admit that I’m confident if Justin had a choice, he would stay with us until the last possible moment. How do I know this from a kid who can’t talk? Honestly, I just know. I have a child who loves his routines, who loves his home, his bed, and is always happy to come back from vacation and just be home.
So you see my conundrum.
If I thought for a minute Justin would want to be more independent in his twenties I would still worry about the potential for abuse, but I would be more at peace with the decision. Of course the reality is, his father and I will die, and since we had him late he’ll have about forty potential years on this planet without us. He needs to live somewhere. And I am left to ponder, is it kinder to try and place him in his twenties when he’s younger and ostensibly more open to change, or keep him until he’s in his forties and his parents are doddering old farts who physically can’t take care of him anymore?
I will probably go to my grave not knowing the answer to this.
The reality is he most likely won’t come up to the top of the waiting list for a budget for residential care until he’s in his mid-thirties, so the decision may be made for us. The other truth is when the budget is available I may not be enamored of his residential options either, so the wait may continue.
Ah, uncertainty, my favorite.
Regardless, I am looking forward to finding out about this process with good people, most of whom have children a few years older than mine so I have a lot to learn. I will be learning about fundraising, and networking to find developers, and learning about all the myriad regulations associated with starting a home of this nature, of which I’m assured there are many.
Despite all the potential roadblocks, I am excited to learn.
I will be writing about the process along the way. Wish us luck!
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October 6, 2010
Posted in AMT's Faves, If You Need a Good Cry, My Take on Autism tagged autism, group home at 6:27 am by autismmommytherapist
A few months ago I read a chilling article in the Schafer Autism Report, a piece describing the murders of two autistic children, ages two and five, at the hands of their own mother. Sadly, this is not the first article of its kind I have read since my eldest son was diagnosed with autism, and I doubt it will be the last. Of course I was horrified and considered writing about it, perhaps in part simply to banish the images of their terrible deaths from my mind. Life however kept me from the computer for a few days, and in the meantime I had the opportunity to read two separate blog entries about the tragedy, one on:
http://adiaryofamom.wordpress.com/2010/07/23/the-unthinkable/,
and the second on:
http://sonidoinquieto.wordpress.com/2010/07/26/normal/
Both pieces were eloquently written, and encompassed everything I wanted to say, which rarely happens to me, as opinionated as I am. I eventually decided not to share my thoughts, but not just because the two authors of these blogs had collectively done such a beautiful job treating this subject. I realized I also didn’t feel compelled to scribe my thoughts because despite the horror of the event, despite the comparatively close ages of the children to my own, in some way I found I couldn’t relate to what happened. It seems there are few things I am certain of in this world, fewer now since I’ve become a mom.
But one thing of which I am irrevocably certain is that I will never kill my kids.
So, I let this topic go, said silent prayers for those children and any grieving family members they left behind, and did what we all do when something occurs beyond the comprehension of our everyday minds. I let it go as best I could, and moved on.
Unfortunately, that respite was short-lived, as a few weeks later I read a similarly chilling report of the death of an autistic person, this time an adult. This young man had been a resident of a group home in Pennsylvania, reportedly a rather good one. He was one of a set of triplets, one neurotypical sister, one autistic brother. One day, apparently returning in the van belonging to his residential placement, the driver inadvertently left him in the back of the vehicle and forgot he was in there for over an hour. In the middle of the day. In July. During one of the hottest summers we’ve had in a while.
He died. This young man stayed in the car, slowly boiled to death in the sun, and died. I couldn’t wrap my head around this initially, so of course I went into denial mode. I knew his death had to have been horrible, so I couldn’t dissipate those images for myself. He was gone, so I had to move on to thoughts of the family, not just the parents or the sister, but his autistic sibling as well. I placated myself with hopes that perhaps both men had been so severely affected they really had no relationship with one another, that the surviving adult would not truly miss his sibling, that the grieving would be confined to the rest of the family.
I read further, and discovered that in fact the two had resided together at the group home, and were inseparable. The mother was in fact consulting a psychologist to try and figure out how to explain to her remaining son that he’d never see his brother again.
They were best friends.
That’s when my stomach hollowed out and my eyes filled with tears, an infrequent occurrence these days because I find indulging in it just takes too much out of me. This time, I had no control over the situation, because I understand too well the “big picture” import of this calamity. I comprehend the ramifications for the parents, the sister, the brother who will most surely grieve the most. This death, and the circumstances surrounding it, play upon my darkest fears regarding the arc of Justin’s life, and what will happen to him when I am gone. The thought of someone harming him, or perhaps almost worse, the idea of him being left alone and unloved for the lion’s share of his life, is unspeakable. I do my best to banish such thoughts, because for once, I am capable of admitting that some things are beyond even my control.
But I cannot banish my grief for this family, and I refuse to try. I won’t attempt to reconcile this loss with everyday platitudes, that this man is in a better place, that perhaps he had a good childhood, that he appeared to have been loved. While these things may all be true, they cannot be mitigated by the enormity of his loss, nor the longterm, enduring effects upon this family.
A mother has lost her child. A father has lost his son. A sister not only has lost a sibling, but also the immeasurable relief of knowing that when her parents are gone, her brother would have a daily companion, a constant comfort as he aged.
Most importantly perhaps, a man has lost his brother, his sanctuary, his mirror to himself.
All of this, all the myriad implications of this event, the ripple effect that will surely haunt those left behind for the remainder of their lives, could have been avoided if a simple choice had been made. A choice to look around a van and make certain no one had been left behind. A choice to conduct a head count after emptying the vehicle and reaching their destination.
A choice for someone to actually fulfill the role of “caretaker”.
And as I finish typing these words and know my part has ended and this family’s devastation has just begun, I only have this left to say, for there are really no words that can convey the magnitude of this loss other than these:
I am so truly, truly, sorry.
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