Susan's Blog

Wednesday, April 28, 2010

Don’t tell me what I can’t do!

I got de fire in my belly today — and those flames are dancing around Nat’s future!  Where the F is he going to live in a year and a half?  I ain’t gonna wait around for no stinkin’ entitlements to kick in — or not.  Today I made two appointments:  one with a group called Specialized Housing, who have been setting up group homes for decades!!!  Another is Jewish Family and Child Services, part of Combined Jewish Philanthropies.  I am going to go to these people and pick their brains dry.  Call me the Housing Vulture.

Here’s the fantasy — and don’t tell me I can’t do it!!! As an autism mom, you must know that is the best way to get us going and doing it!!!!!!!  I am going to gather 8 or so guys like Nat (of course I’ve known them for years — stay in touch with those autie families, folks — in the end, they might just become your family).  I am going to go to our Housing Authority.  I am going to find a fixer upper near my town.  We will all pool our money and buy it and fix it up.  We will get assistance from philanthropic organizations.  We will pool our services to pay for one qualified live-in staffer.  The guys in the House will share a kitchen and a livingroom and have chores to the best of their abilities.  I will try my damnedest to get a job coach for my darling so he can continue to be the best darn worker Papa Gino’s has ever seen!!!

If I succeed, or when I succeed, I will write about how to do it.  Autism Parents of the World, Unite!  Our kids will not be lost. They will have a future, we just have to really really plan and try to stay awake and alive.


Hi Susan,

It sounds like you might be interested in a group I’ve been working to get off the ground since last summer. We’re called Autism Housing Pathways, and our goal is to be an umbrella group that helps parents access research on how to create housing. I will be doing an announcement about it on Facebook and all the listserves in a couple of weeks, but it sounds like you’re in the mood to hear about it now. Check out our website,


— added by Catherine Boyle on Wednesday, April 28, 2010 at 6:18 pm

You bet I am! Thanks, Cathy!

— added by Susan Senator on Wednesday, April 28, 2010 at 6:22 pm

Ok Housing vulture…You go girl! Stick to the plan. You have a good plan…and a wonderful vision for Nat’s future. I will benefit from your book, I’m sure.

— added by Timmy's mom on Wednesday, April 28, 2010 at 6:24 pm

I was going to say…join the Autism Housing Pathways group, but Cathy beat me to it.

— added by Hillary on Wednesday, April 28, 2010 at 6:33 pm

Awesome idea, Susan. We need to get cracking on some long term care insurance for my little one. Scary to think that I need to buy such a thing for a 6 year old. *sigh*

— added by ASDmomNC on Wednesday, April 28, 2010 at 6:55 pm

Why are “professionals” always surprised when we want something and are willing to make a stink to get it. Especially when it isn’t unreasonable.

Why do they always treat us like we are stupid or white trash?? Why do they keep secrets?? Why are dates “secret”??

May you get what you need…. I now have a date of May 3rd… from googling and finding the school boards spec ed site… If I haven’t heard by May 10th… I’m going to nag.

— added by farmwifetwo on Wednesday, April 28, 2010 at 7:02 pm

Woo Hoo!! Go Susan! Not only will Nat benefit from your advocacy, I feel like I am also benefitting. That stuff of life beyond age 21 is the big black hole – I refuse to think about it. But you give me hope. And that’s a precious thing.

— added by Suzette on Wednesday, April 28, 2010 at 9:08 pm

email me, please

— added by Dadvocate on Wednesday, April 28, 2010 at 9:29 pm

It’s reasons like this that I’m grateful to live in PA. We have several non- profit organizations that house adults with special needs in small homes in very nice neighborhoods. My stepson is currently on a waiting list. We are getting our ducks in a row. -Farmwifetwo- The squeaky wheel gets the oil, so squeak away!

— added by Lisa on Wednesday, April 28, 2010 at 9:39 pm

Love you and what you do for Nat and families like mine. Love you to the core! Keep up the good work and great writing!

— added by Stacy on Wednesday, April 28, 2010 at 10:22 pm

Folks — with deepest respect — there are millions of adults with autism currently living in the United States. My son, Stefan, is one of them. Stefan works full time, takes public transportation and lives in his own apartment. In my community, there are Vocational Rehabilitation offices, employment services, community services and various non-profit organizations – some progressive, some not — who have been working in the trenches for years to provide supports to individuals with disabilities. While it is very important for families to create a “vision” for the future for their sons and daughters, it is not necessary to drink the “kool aid” offered by many of the large fund raising organizations that all is despair and that everything must be specially created for people with autism by them or by families from the ground up. There really are parents and professionals in the field who have been at this for awhile. In fact, for many of us, the transition to adult life was a pleasant surprise, and in many ways, offered our children more options and us a chance at creative solutions.

— added by Jamie Ruppmann on Thursday, April 29, 2010 at 6:54 am

Hi Jamie,
I doubt anyone here is drunk on kool-aid — we see the numbers and talk to our agencies all the time. The economy dictates vision and planning. I am glad you have found a helpful organization, and it would be even more beneficial if you would put up the website and contact info so that we, too, can enjoy what you have found for Stefan. It is also important to remember that not all people with ASD are alike. Some can live independently, and some will require different things, just like any other individual on this earth.I am glad that not all is despair; now let’s see what you have found.

— added by Susan Senator on Thursday, April 29, 2010 at 7:03 am

Hmmm … I can feel a fundraiser starting to form. Whether it’s for Autism Housing Pathways or general awareness, please consider tapping into the biking community. No, not guys wearing spandex riding bicycles. Think along the lines of guys wearing leather jackets and riding motorcycles. I participate in three or four each year (heart disease, a particular young man named Tyler with severe health issues, and food assistance). You’d be pleasantly surprised at how easy they are to organize, how many bikers attend, and the amount of press coverage they receive.

— added by Don on Thursday, April 29, 2010 at 8:48 am

My son is just turning seven, but I think about his long-term housing options frequently, even now. In NJ the waiting list for housing is currently about twenty years after autistic adults reach majority. This means my husband and I would be pushing eighty by the time we finally found an appropriate placement for him, and I don’t see that working for all of us.

There seem to be a number of growing alternatives out there, some of which follow the path you describe. I hope as a community we can all share them with one another, particularly as we all seem to have limited research time…

Thanks for bringing this up Susan, I will be interested to see what Autism Housing Pathways has to offer!

— added by kim mccafferty on Thursday, April 29, 2010 at 10:40 am

Kim here in rural Ont it’s over 10yrs of wait. And the Prov gov’t just said earlier this week it would not regulate PSW’s (personal support workers). Those would be the people that would be looking after our adult children and us if we need to be put into care one day. Frightening.

Lisa – I’m one of those parents that school systems love to hate. I was at the lawyers today – change will to put Henson trust in for little boy – and was told I was #3 parent in the last couple of weeks asking if they helped parents fight the school system. If I don’t hear soon… they really don’t want the Superintendant to read my appeal…..

A year ago I wrote a 23pg lobby paper to the Fed’s against a bill the Opposition wanted to pass on funding ABA (fwiw I’m against funding 1 therapy over others). It’s 130pgs long now…. I guess you can always look at the dealing with the system as good book fodder…. sigh…

— added by farmwifetwo on Thursday, April 29, 2010 at 1:00 pm

If you are indeed able to acquire the funding and actually get this up and running it could be a model of how to do it for others. I myself would be interested as I am already looking for a place for my son (he is 13); and I am already worried. I absolutely don’t want him spending his adult years with me unless there isn’t anywhere else for him to live. He needs the structure, the socialization and comradare of being around other young adults who also have autism. It is no different than any kid living in the dorms at college–by that age, most really don’t want to live with mom and dad. Funding is the biggie here–very few parents (myself included) would have the funds to entirely cover this kind of living arrangement.

— added by Sharon Jones on Thursday, April 29, 2010 at 3:09 pm

That’s just the point. We did not have an agency or “program” – Stefan receives employment supports from the same agencies and non-profits as other individuals with disabilities in the community. Currently he is working on a government contract procured by Service Source – a non-profit adult provider in our community. He lives in an apartment like anyone else and gets drop in support and lots of love and encouragement from his family. With nationwide waiting lists so long for all human services, I thought the point of the blog was that families could not wait for someone else to provide for their kids??? And, after almost forty years in the trenches and in policy work, I get it that not all individuals are alike and there are different levels of support required. I do believe that the fund raisers often use a vision of despair and darkness to encourage donations. We don’t have to accept that vision. Families can and do create their own.

— added by Jamie Ruppmann on Friday, April 30, 2010 at 8:06 am

You’re right, Jamie, that was exactly my point. I think I misunderstood yours, so thanks for clarifying.

— added by Susan Senator on Friday, April 30, 2010 at 8:11 am

Fyi, here is a great website. It raises the bar.

— added by Jane in Wisconsin on Friday, April 30, 2010 at 7:24 pm

Jane from Wisconsin! In the Advocacy Chapter of my book! Yay!

— added by Susan Senator on Friday, April 30, 2010 at 7:44 pm

Hi Susan, yes it’s me! Kudos to you – I think you are moving in the right direction. The more control you have over the situation, the better for all involved!

— added by Jane in Wisconsin on Friday, April 30, 2010 at 10:45 pm

YAY Susan!! Even though Nick is only six, we too have thought about his adult years-and ironically enough, came to just about the same conclusion as you, with a few differences. We thought that Nick could eventually live in our current travel trailer, and we could help create a camp for autistic kids. Nick loves camping so much, that is how we thought of it. Of course, this is way in the future right now, but it is kind of funny that all of our business ideas now seem to incorporate autistic people, and what we can do for them as well as for Nick. We would also have jobs at the campsite for the older auties and they could live at the park. There have been so many ideas floating around in our heads the last few years. Hey, can we reserve a spot in your house? 🙂

— added by Amy on Monday, May 3, 2010 at 9:05 pm

Sounds like you are close to achieving this dream. Keep up the good work.

— added by Jon on Thursday, January 12, 2012 at 9:05 pm

%d bloggers like this: