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Group Home

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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.

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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!

For more on my family visit my blog at autismmommytherapist.wordpress.com

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