Susan's Blog

Saturday, October 30, 2010

Back to the Future

October makes five years that I’ve been writing this blog.  I’ve been lazy about it lately, but many posts have simmered nonetheless.  I’ve been very caught up in trying to move forward on Nat’s future — housing, supports, day program, job.  It occurs to me that though you do have to plan the future in many cases in life, with Nat I feel that I have to move, to make, his future.  I can’t let the future unfold.

Yet, this is not a situation unique to my oldest child.  I also had to look for the path and propel my middle child, my Max, forward to his future.  We assumed, knew, imagined that he would apply to college, but, to paraphrase Mammy:  “Imaginin’ ain’t gettin.'”  Ned and I had to attend parent meetings, where the panic and energy in the room made it hard to sit still.  We took Max on trips to visit colleges, slogging across dewy quads, studying the faces of students to find — what?  Something familiar, something that felt “right.” Max was on the look out for kids with ironic tee-shirts and balaclava hats.  Posters advertising geeky get-togethers.  If there were too many clean-cut guys carrying tall blue plastic cups, too many girls in Uggs and ponytails, it was not the place for him.

It wasn’t much, but it was a start.  We didn’t know that we already knew so much:  Max eschews categorization; Max is an A student; Max thrives in the world of creativity + engineering; Max has a good head on his shoulders; Max did not want to stay in Boston.  So  Max ended up getting into the Tisch School — NYU’s art school — and so Greenwich Village will be his campus.  That seems pretty right to me.  But we still won’t know anything until he starts (this is his gap year).  He’s already making noises about how he wants to do computer stuff, not so much film…

Whatever.  None of this makes me worried.  No, I won’t be kept up at night worrying about NYU until Max is there, and then, well — ick.  But I have time.

Not so with Nat.  The sense of not much time has been pressing down on me for a long time.  Ever since we got to that IEP meeting five or seven years ago where they started making noises that we should cut some of the academic goals in favor of the pragmatic.  That was the moment when I realized that Nat’s childhood was over.  He was not going to be going to school forever.  Just like when he was three, Time swoops down and pries him out of my arms and throws him somewhere and I just have to run alongside him and make sure he’s not hurt and can still stand up and walk forward.

With Nat’s imminent adulthood, I have responded in the only way I know how:  taking wild, sweeping swings at the dense clusters of information on Post 22, gathering knowledge greedily in both arms, sucking it down, all of it, whether accurate or not.  Recently, for example, I’ve been on a rocket ship trajectory towards setting up a group home for him.  I’ve been meeting with so many other people, and canceling meetings with so many people, just trying to figure out how to put it all together.  Do I sell my house to make this happen?  Do I put my energy into getting a philanthropical organization to create a home?  Do I become a 501C3, R2D2, or whatever?  The more info I consumed, the more constipated I felt.  I felt like I was in Dante’s version of Dys, the lowest part of Hell, where the more you struggle, the more you are trapped in ice.  What I keep finding is, there is no Step 1 and then Step 2.  It all feels like you have to do 1,2,3, and 4 all at once.

Talked to a Dad yesterday, though; this guy knows everything about housing, vocational, day programming.  I’ve known him for a couple of years now and I used to feel nervous whenever I was pulled into his orbit because he knew so much and seemed almost to enjoy arranging the pieces and rearranging them to see what the puzzle could look like.  He crackles with competence. He smiles a lot. Yesterday, after a long session with him on the phone, I finally knew what I have to do next:  Figure out Nat’s days, rather than his nights.  “What does it matter if he’s living in a home you’ve created, if he’s got nothing to do all day?”  This was the question that snapped me out of my funk.

Perhaps I don’t have to work so very hard at trying to build Nat’s group home now, when I don’t even have a reliable cohort of families to work with.  I can put my energy into finding for Nat an enriching day program, one where he works as much as possible, where he can exercise, where he can be creative, cook for himself, and perhaps even go back to some of the academics he had to give up years ago.  Even if he remains in my house for a year or two — so what?  He will be gainfully occupied for most of the day.  And it won’t be forever.  Once he is established in the Day Program routine, then we can take the steps towards living somewhere else, with others, with supports.  And during that time, we will get to know more families with similar outlooks and start to cultivate each other, to form relationships that will lead towards a housing solution.

I don’t know, at least that’s where I am this weekend.


Keeping Nat occupied, moving forward, it really key now isn’t it? One day at a time, and you’re making the right decisions for him.

— added by Ed P. on Saturday, October 30, 2010 at 8:38 am

What a great insight! Thank God for people who have been there.

— added by Brenda (mamabegood) on Saturday, October 30, 2010 at 8:40 am

I realize that my kid is in Gr 4, but the more and more I read, I listen, I ask, the more I fear highschool’s a disaster waiting to happen – Gr 7/8 maybe be too when he returns to being integrated after 3yrs with the most amazing teacher.

I’m leaning towards homeschooling…. and I’ve started thinking already… which probably isn’t helping my bp any :)… but I do know the advice you were given was good….

B/c I’m thinking…. how do I teach him a trade, and keep him occupied.

How do we keep them busy????

Hope you get it figured out.

— added by farmwifetwo on Saturday, October 30, 2010 at 8:46 am

Don’t forget to seek out any state support that might be there, as well as social security and medicaid for Nat. In NY we have VESID and ARC. I don’t know where you are. Also any IEP plan should have a transition program developed for Nat that includes what he is going to do after high school and how it can be done once he is out of highschool. He can also stay in highschool until he is 21 if need be. (I am not sure how old Nat is)Talk to an estate lawyer and set up a special needs trust if you do not have one already and have the proper documents drawn that give you power of attorney, make sure he has a living will, etc.(You should also have certain documents for Max as well, because once he is 18 you do not have a legal say in his medical treatment if he needs it.) I do not know Nat and how disabled he is but once he is 18 he is an adult in the eyes of the law unless you have him adjudicated an incompetent. You must make a decision and talk to a lawyer. I know this is alot when you are trying to create a future for Nat also but it is a necessary reality and everyone needs to think about it. Been there and am aout to be there again in a year.

— added by Elise on Saturday, October 30, 2010 at 8:56 am

Does he have to move out of the place where he’s living now? I thought you were fairly satisfied with his housing situation. If it were up to Nat, where would he like to live?
From what I recall of the teenage boys years ago in my class in the school for autism, the vast majority of them lacked what might be called initiative. If left to their own devices most of them would be perfectly happy to sit and talk to themselves all day. The teachers and aides took them food shopping and helped them prepare meals but I think if we hadn’t been there to get them going they wouldn’t have made shopping lists and planned and cooked meals; they would have waited until they were starving and then gone into the kitchen and grabbed whatever edibles they could find. Of course planning is a learned skill but I really don’t think that initiative can be taught. It’s one of the troublesome things about autism — getting the person to define what he wants.

— added by Sunni on Saturday, October 30, 2010 at 9:26 am

Susan, I’m glad you spoke to the smiling man with all the knowledge, because he set you in the right direction. You are absolutely right to have realized that you need to focus on the day program first. The housing can be worked on also, but it’s wise to focus on and plan the day activities right now. It sounds like Nat will be graduating this year, so this is a good time for planning next years program.

My daughter Marisa, is also graduating and she has been on waiting lists for housing since she turned 15. Even though I took the steps to place her on wait lists, (we’re on Long Island in NY where there is a major shortage of housing), I am much more concerned about planning for her day activities right now. It seems to me that it is more important to focus on this area first, and then work on a housing plan later. Marisa is eager to move out of our home and be on her own, but I tell her that just as her older sisters needed to live at home while first starting their careers, she will have an easier time adjusting to the transition from school to adult activities, if she takes one step at a time.

Marisa will be participating in the Self-Determination program here in New York, rather than entering the traditional Day Habilitation programs run by many agencies here on Long Island. Self Determination involves planning a day program tailor-made for the individual whether it means working or volunteering in a position of interest to them, pursuing vocational training, taking courses to help further an area of interest, attending exercise classes, or joining recreation groups for social integration. The options are limitless! The goal is to help our special needs kids further their growth toward a fulfilling and happy life. You might try checking to see if a similar program funded by your state Office for People with Developmental Disabilities exists in your state.

Whatever you do, don’t panic! Remember that there is no time limit on getting it all done. The fact that you are thinking and reaching out to others with the knowledge and know how means that you will more than likely find success in helping Nat achieve his life goals.

— added by Sherry Rubin on Saturday, October 30, 2010 at 12:38 pm

Susan – This is why the Advancing Futures for Adults with Autism (AFAA) effort is so important. Employment + Housing. One without the other shortchanges adults with autism. It’s also why (as I’ve shared with you before) the lack of emphasis on the agricultural communities for adults with autism, all of which have zero unemployment, zero openings, and huge waiting lists borders on the criminal.

— added by Dadvocate on Sunday, October 31, 2010 at 8:46 pm

Wow, you’ve gotten a lot done. It’s a good thing Nat has you in his corner!

— added by Alice on Monday, November 1, 2010 at 1:15 pm

I wish I had you in this corner of the world, Susan. That way I don’t drive myself batty at times, thinking of what to do for my 16-year-old. I worry enough with my pre-college son so adding this constant worry over the younger one feels like my whole body is on high alert each day. I know my yonger son will need us forever and I am at peace with that. But if there was some way where he also finds his measure of self-worth, I know then that even when I leave him behind in this world, he’ll be okay.

— added by Kittymama on Tuesday, November 2, 2010 at 10:34 pm

Okasaneko: life is long. He will likely find his measure of self-worth, if he has not already! When you leave him behind in this world, he’ll be okay — because he had you for a mom.

— added by Susan Senator on Tuesday, November 2, 2010 at 10:37 pm

Susan, I just read your survival guide in one day. Could not put it down. Your insights are so helpful.I was wondering about your thoughts in terms of setting up a disability trust for Nat. My biggest worry, and my son is 5 in kindergarten with pdd-nos, is what happens when we are gone?

— added by Liz on Monday, November 8, 2010 at 10:36 pm