Susan's Blog

Saturday, January 22, 2011

I’ll Never Go Helpless Again

I finished a really good book this morning, and then went to empty the dishwasher, when the thought strayed into my head that I don’t do much these days.  This is the kind of thought I am prone to, a vestige of my former low self-esteem.  Luckily, my new, stronger parts of my brain rose up quickly in my defense.  “What the F?  Do you know what you do with your time?”

Yes, I thought.  These days, and for the past year or so, my main occupation has been planning for Nat’s Post 22.  Every day I read something, talk to someone, meet with someone, email someone and basically move towards a complete synthesis of many streams of information.  The way I do things is through obsession.  That’s the way I love, that’s the way I work, write, exercise, and parent.  I dig in to the deepest layer, below skin, fat, and muscle; below confidence and coping, to the raw and bloody emotions around a subject and I try to feel it, see it, and know it.  Forget warts and all, I want to get to the pathology of things.  That is the only way to live.

That is the only way I can respond to all of the anxiety I have over Nat’s independent adulthood:  by fixating on the entire subject until I know it.  And I am getting there, gaining a fluency in Government Speak, where I can juggle federal programs with state agencies, rules and laws, and also how to find the catch in each kind of support offered.  I write down figures on any scrap of paper lying around — drives Ned crazy that I never get a clean sheet — and I calculate:  “If Nat qualifies for this, we will need to contribute that; if Nat can handle this level of support, we can go for that kind of living situation.”

I got so much figured out.  If I were grading me, I’d get an A- in Post -22.  So what’s the problem?  Aside from the fact that we won’t know if Nat will get state funds for even a part-time caregiver until two months before he turns 22 (yes, it’s true, at least in Massachusetts; the Department of Developmental Services gets its budget from the Legislature, which never passes a budget on time)?  The problem is that I can’t get a core group of families!

My friends who have sons around Nat’s age rarely even return my zealous, fact-filled emails.  They don’t want to deal with it.  They have full-time jobs and other pressures.  They know how to take things more slowly, to have balance in their lives.  But it drives me crazy.  I want someone to nudge, someone to compare notes with, but it has to be someone I’ve known for a while.  Someone who knows Nat and whose kid I know!  This is part of my dream:  to have Nat live with guys he knows and likes!  How great would that be?

Why won’t they sit down and plan with me?  Am I that much of a pain in the ass?

But imagine if the boys could live near us!  Not with us, near us!  A few weeks ago I found a really cute 3-4 bedroom dump of a house right nearby in a great part of my town.  Affordable-ish.  An agency could buy it and fix it up.  My town could be persuaded to provide a Project-Based Section 8 and reduce the rent, saving the rest of their SSI checks for food and part of their caregiver’s salary.  The caregiver could live in the fourth bedroom rent free to supplement.  I could see it.  It was perfect.  I imagined painting it all of Nat’s favorite colors.  I imagined big loud young men stretched out in the high-ceilinged livingroom, rejoicing every time the T went by (the D-line runs right behind the house!) (these young men love trains).  I thought of how they could go on walks with their caregiver (three young men could share one using Adult Foster Care money, if they qualify) to all Nat’s familiar haunts:  Starbucks, KuKoos Cafe, the Library, Peet’s, JP Licks, Booksmith, Panera.  It would be so easy to live there without even having to buy a car for the house because they could walk to Stop&Shop.  They could join ZipCar if they needed wheels.  They could use The Ride. Someday.  You gotta have goals.

I am so obsessed with making this happen for Nat.  This feels like the way I planned before he was born.  I read Consumer Reports to learn about the safest baby equipment.  I learned about de-leading an old house.  I read and read about what labor and delivery are like.  I joined La Leche League so that I could nurse him (I didn’t).  I wondered about cloth vs. disposable diapers.  I did not let myself think about disability or anything like that, but the worries lay inside my heart like clogged arteries waiting to close up.  So I didn’t learn about that.

This is like awaiting the birth of Baby Nat because I am full of hope!  Paradoxically, this process makes me excited.  I feel proud of understanding The System, of the helpful connections I’ve made, of the vision that I now have.  My mind is on all its cylinders.  Nat’s adulthood does not make me sad or scared (most of the time), because I have explored every dark corner of it that I can.  I am leaving very little to chance or the vicissitudes of state budgets.

Yes, yes, of course this could turn out just the way Nat’s babyhood turned out, where nothing matched up with what I had prepared for.  It was like I had studied for the wrong exam.  Autistic babyhood was not covered in any of the bestselling baby books.  I still have a little poisonous hatred for Brazelton and What to Expect the First Year.  Fuck them for not knowing Nat.

Sorry.  Anyway, I need to talk and think about Turning 22 so much that I’m writing this down today.  If I am wrong, I will deal with it, after being knocked on my ass by Nasty Reality.  This is my boy, after all!  My orange-and-yellow Nat!  If I’ve learned anything from the Incredible Horrible Wonderful Clueless First Year of Nat, it’s that as God is my witness, I’ll never be helpless again.


I love this post and I love your passion for creating what sounds like a wonderful post-22 for Nat. If I were one of those people getting your fact-filled emails, I’d just email you back with, “Yes. Whatever you suggest. Here is my deposit check.”

Good for you for being so ready and working so hard. Do you mind if I come asking you questions in 14 or so years?

— added by Stimey on Saturday, January 22, 2011 at 5:32 pm

Hi Susan,

Boy,do I hear you! And finding families is very tough. I think part of it is that when families hear how much it really costs, they dive back into their foxhole and try not to think about it. Yet from everything I hear, you are far better getting a plan in place while you have time to plan. Once the school bus stops coming, or the residential school is no longer there for you, you are far too consumed with day-to-day caregiving.

I know you’ll get there, and we will too.


— added by Catherine Boyle on Saturday, January 22, 2011 at 5:32 pm

Susan, I am wondering what you think of autistic adults who live with their families into adulthood. Maybe it’s because I was in my 40’s when I had D, but I feel like when that time comes, I might not want him to live anywhere else, or depending upon what is available, might not think that would be best for him.I know we won’t be here forever, I just wanted to know what your thoughts were. Funny last night, my husband and I were having a conversation and trying to remember the name of our daughters hampster…neither of us could, and D, who we didn’t know was listening, yells out “it’s Pokey!” My husband laughed and said to him, “I think someday you’re gonna be the one taking care of us!”

— added by eileen on Saturday, January 22, 2011 at 6:16 pm

Eileen, the beauty of parenthood is that every kid is different, a package waiting to be unwrapped. If you and D are more comfortable with his living at home, then plan for that. Just don’t forget to plan for your very old age. D is growing in leaps and bounds and you will have to see what he is like before listening to old codgers like me! 🙂

— added by Susan Senator on Saturday, January 22, 2011 at 6:22 pm

Thank you! This is the second time one of your posts left me feeling less terrified of my own kid’s future. Maybe the parents ignoring your emails will read this and get on board!

— added by Jana on Saturday, January 22, 2011 at 6:32 pm

I stay up nights planning these things too! Obsessively.

— added by Susan on Saturday, January 22, 2011 at 8:16 pm

Hi Sue

Thanks for this post. I spend good chunks of time thinking about this stuff too, but then I do put it away in a hatbox on a fairly high shelf so I can go to work, do the caregiving, smooth together the pieces of the day. But I take that box down at least once a day. As parent of a young woman I am including in my explorations all-female communities. Do you, does anyone, have a connection to someone who has firsthand knowledge of Mandy’s Special Farm in the Southwest, or Riverview in Stockbridge MA?

— added by Melinda Coppola on Sunday, January 23, 2011 at 8:45 am

M –
I don’t, I’m sorry!

— added by Susan Senator on Sunday, January 23, 2011 at 8:46 am

It’s normal… it’s absolutely amazing how few parents actually dig, plan and get it sorted. My Mom’s friend has 2 of them in her classroom… SIL has one… I keep sending people to my FSW and nobody calls her – yet they were griping looking for help. Out of 400,000 people (at 1/100 how many autistic children) in the city, the grandparents autism group has 10 members.

People want someone else to do it for them. I like you, would rather do it myself and get the best, not the leftovers.

— added by farmwifetwo on Sunday, January 23, 2011 at 12:16 pm

Susan, I am already thinking, plotting, and planning regarding where my son will live post-22, and he’s seven. Yes, you heard right, seven. I truly validate your angst, and hope you get some calls back soon!

— added by kim mccafferty on Sunday, January 23, 2011 at 8:13 pm

Thanks Susan, we are in similar places in terms of planning even though my son is 35. He needs to transition from an old system to a new one. The new system has many challenges including a slowly disappearing budget. There are several resources/orgs out there that promote the principals of self-determination. Unfortunately, this is something on the periphery, since it requires a concerted effort by family, the system and the community to be successful. It is the standard we should migrate towards one step at a time.

— added by Jane in Wisconsin on Sunday, January 23, 2011 at 10:19 pm

I think it’s great how you are spending your time! I do things pretty obsessively also, although I’ve learned to disguise it from my friends a little over the years (they know, anyway)

A lot of the stuff I really want them to learn to do soon (use the bathroom, willingly take medicine) is because I know it will make their lives so much better when they leave home.

— added by Alice on Monday, January 24, 2011 at 11:17 am

I’ve had the decision of where my son will live taken away from me. My husband has made arrangements for my son to live full time in a residential facility for teens and adults with autism. He is only 14 and I am broken-hearted. I will only see him on weekends. He will still attend school during the week but the facility in which he will live will now really be the parent, not me. No more tucking him in at night or hearing about his day at the end of the day. My feelings be damned, this is what’s going to happen just deal with it, get over it, we’ve dealt with autism long enough, etc. I am told I am being “selfish.” Susan, you’ve written about your fantasy of a house for your son, well today here’s mine–getting a ton of money quickly, getting a divorce and bringing my son back home to me. As usual, it takes money, money money to solve just about any problem we have.

— added by Sharon Jones on Monday, January 24, 2011 at 12:24 pm

This sounds like a nightmare. I don’t know any of your life’s details, but I hear how sad and angry you are; I would be, too. Is there any way around this decision, since you feel so strongly that it is wrong? I thought that team decisions about placement were subject to approval by the parents! ?

I know what you mean about how it all takes money. We are trying to save for college for two sons as well as for the rest of Nat’s life, so… that’s why I’m in hyper efficiency mode, because the time is now!!

— added by Susan Senator on Monday, January 24, 2011 at 3:28 pm

Susan – yep, that’s the only way I know to do things, too. Laser-like focus.

Sharon – It seems to me that you could get a court to intervene for you – even if you can’t afford a lawyer – like a guardian ad litem (who is appointed by a court to look out for the best interests of the child. ((Hugs))

— added by Brenda (mamabegood) on Saturday, January 29, 2011 at 8:55 am

[…] recently read a wonderful post by Susan Senator, in which she discusses her journey in trying to secure housing for her almost twenty-two-year-old […]

— added by Get a Life « Autism Mommy-Therapist on Sunday, January 30, 2011 at 7:56 pm

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