Susan's Blog

Wednesday, August 24, 2011

Black thoughts on a bright sunny day

My so-called strength is deserting me.  I hate this, I hate this.  There is no escaping my terrible sadness and fear for Nat’s future.  Yes, yes, he is luckier than some because he does get some funding.  We don’t know how much or where he’ll live or with whom or whom the staff will be but we do know he’s eligible for residential care.  But still, for residential care, there is always a catch.

Nat is between two worlds; he always has been.  Neither “high-functioning” or “low,”  it is hard to find a match for him, just as it was hard to find a school program.  There is always a fork in the road, between the upper levels who are mostly verbal and can make conversation and be left alone maybe a little or a lot, and the so-called lower levels who appear disengaged and have a lot of trouble with communication and safety. In school we had to make the choice between academic programs and pragmatics.  We had to risk regression with peers who were more challenging or we had to risk his anxiety and aggression with a more demanding curriculum and fewer support staff.

Nothing for just plain Nat.  How often I have wanted to just pull him out of the world and teach him myself.  But what kind of life would that be for either of us?  I need to be out in the world and he does, too.  He loves being around people, as long as he doesn’t have to talk to them, probably more than I do.  I can’t deny him that.

The group home project is a bit frail at the moment.  We are not at all sure we have anyone for Nat in November, when he needs it.  There is talk of bringing Nat home for a few months, with support.  But that makes me scared.  Will he become anxious with the changes and regress and aggress?  Will Ben pay the price?  Will we even be able to find adequate staff once he does have a cohort?

Why does the state set such low pay rates for caregivers?  How the fuck does that make any sense?  And if they do that, why can’t I legally supplement their salaries and pay them more?  It is a system that perpetuates low-level life styles, mostly maintenance, because the staff are disengaged.  They need to be paid better, like anyone else.  What is motivating them?  Coming to work to restrain people and clean them up?  No wonder there is so much “van therapy;” it is probably a relief to pile them into the van and get them seat-belted and deposit them at DayHab or a mall.  God damn it.

Oh, I’m sorry to anger or depress you, my dear readers.  These are my fears.  They are your fears, too.  They are the worst I can think of.  Oh no, wait, there is worse.  I could live in a country like Darfur or something.  God forbid.  This fucking world.

I know of a young man who would be a perfect match for Nat but he doesn’t have funding.  The only funding available for staff for Nat and this guy is very very low.  So to put them together means risking a disengaged caregiver.

Who can help us?  All I see is uncertainty stretching ahead for my dear son.  Sons.  Me.  Us.  Sure, yes, life is always uncertain, red in tooth and claw.  But fucking hell I have tried so hard to make things work for him and now there is so much I have to leave to chance.

plus Max is leaving on Sunday.


Susan – I have no words of wisdom. Just “I’m sorry” – This is a tough road.

— added by Suzette on Wednesday, August 24, 2011 at 1:10 pm

Take heart…you have a right to every single bit of frustration and anger you’re feeling. Just know that “this too shall pass.” That bit of cliche is probably small consolation, but I’ve been there. I have a 41 year old autistic son, Jay, and I’ve tread your path, even finding an apartment mate for him but losing because of funding issues. That was years ago. I’ve just finished a book – like yours a memoir about our life with our special son. It ends being a really good story. Take heart.

— added by mary p miller on Wednesday, August 24, 2011 at 1:28 pm

Mary, thanks. Please be sure to let me know when your book is out.

— added by Susan Senator on Wednesday, August 24, 2011 at 1:31 pm

Van therapy, home schooling, adult life, low pay caregiving…you are hitting this on the head. I will reread and reread and hope there’s a light at the end of the tunnel. Best, ANNE

— added by Anne Barbano on Wednesday, August 24, 2011 at 1:42 pm

My son is diagnosed as Developmentally Disabled NOS (Not otherwise Specified). He has neither autism nor aspergers. But he cannot function in the world by himself. Right now I’m renting an apartment at $850/mo just so he can have a place to live. It sucks. Where are you and what project were you speaking of. I have often thought about creating a non-profit where I can buy a building with several apartments and have one care-giver who stops in on them.

— added by Daniel on Wednesday, August 24, 2011 at 2:30 pm

Sending you some warm thoughts. I wish there were easier answers.

— added by Alice on Wednesday, August 24, 2011 at 2:46 pm

I don’t have answers. I’m grappling with the same fears. So many of us are. Sending you cyber hugs.

— added by Liane on Wednesday, August 24, 2011 at 3:44 pm

I have a thirty-eight year old son, Brandon who has autism,intractable epilepsy, and severe learning disorders. All the professionals who worked with my son told us he would never be able to live alone. They were wrong. Brandon has been living in his own apartment for the past fourteen years. I speak around the country addressing the number one fear among parents of special needs children, What will happen to our special needs children when they become adults? In the next ten years 800,000 autistic children will become adults and as you know we are not prepared for them. I have a new non-profit, Autism Independence Foundation and we will be addressing and tackling these issues. For now I would suggest for you to be very creative and think outside the box and If you wish I would be happy to talk with you to brainstorm. Remember to breathe.

— added by Amalia Starr on Wednesday, August 24, 2011 at 3:44 pm

In the end you will find a solution, of course you’ll find a solution because you always do. But in the meanwhile it sucks riding this bumpy road without any usefull signs to guide you. Take care and don’t forget to lookup your ‘keys to the universe’ 😉

— added by Janneke van Bockel on Wednesday, August 24, 2011 at 4:15 pm

My son, who is 12, is just like Nat. Neither “high functioning” nor “low functioning”, we have had to tailor Conor’s education to, well, Conor with a home school program. We’ve decided to put him in school now, with less focus on academics and more focus on pragmatics because we’re now focused on how he’ll live when he’s an adult.

I often wonder why this country can find so much money for CEOs and athletes and even Congressional representatives, but those doing work with individuals with disabilities have to scramble for ever dime. It doesn’t make any sense to me.

I wish you luck in your search to find a good place for Nat.

— added by Alisa Rock on Wednesday, August 24, 2011 at 4:46 pm

So sorry things are hard Susan. What happened to the Advocates program you were so hopeful about? Be careful for other reasons, about bringing Nat home. Once you do that, “they” may think that you can do it forever and he will end up on a 10 year waiting list. Let me know if I can do anything to help. I will try. M

— added by Michele on Wednesday, August 24, 2011 at 5:57 pm

Susan so understand you
I have Zach 16 non verbal low functioning and Chris
15 high functioning. There is nothing that just fits
For them it’s too much of this or that
And it can be sad and depressing at time
But we move forward, no choice
Sending you a hug!

— added by Melissa Perry on Wednesday, August 24, 2011 at 6:35 pm

The world is a scary place for us mama bears who want to make it safe for our kids. You’re not alone. I don’t have answers – we are looking at the same scenario for our son.

Reading the comments here encouraged me – it’s pretty much me and my son right now for the near future. He is in school still but will soon be done with that….and then on to whatever is next. There have been so many season I thought I couldn’t get through but here I am on the other side of so many of them. I hope that these next seasons will be the same.

I hope for good things for Nat and for you, too.


— added by Dixie Redmond on Wednesday, August 24, 2011 at 10:11 pm

We’re all out here rooting for you Susan. Hopefully things will shake out in a good way for Nat — due mostly to your exhaustive efforts no doubt. I too get depressed when I think about how we as a society care for disabled adults — it sucks. I have the same worries with an in between child similar to Nat, but more years to figure it out. We just sent off our 2nd kid to college, and our autistic child is officially an only — I’ve been fearing this transition but hopeful we can begin a new chapter here. Good luck with all the changes.

— added by Vickie on Wednesday, August 24, 2011 at 10:28 pm

“Fucking Hell!, fucking world!” I admire your fiery passion and empathize with your frustrations, but always be reminded, things could be MUCH worse in the larger scheme of things(Darfur notwithstanding.) At least that’s what I keep telling myself! 🙂 smile!….you have a nice smile.

— added by Brian Bell on Sunday, August 28, 2011 at 3:51 am

Also…”A Sea Change” from the Boston Globe this month was a great article.

— added by Brian Bell on Sunday, August 28, 2011 at 4:14 am

You have raised questions that I have struggled for years to find answers to. I came across this article. I have some reservations about the project, but it has some positives.

— added by Jane in Wisconsin on Wednesday, August 31, 2011 at 7:28 pm