Susan's Blog

Tuesday, April 17, 2012

Facing our DIScomfort

I don’t want to scare you or make you nauseous. But I’m going to go into the rabbit hole tonight (I’m also watching The Matrix with Ben and Ned), and take you with me if you want.  I’m going to ask you to face your child’s adulthood.

In terms of nuts and bolts technical autism adulthood information, I do not believe I am the go-to source. That kind of knowledge is not my forte; I’m not a big details person. But I am talking to people who are, who have the sharp minds to pull apart the messy clumps of information about adulthood issues — primarily housing and day programs. I want to give a plug to the friend who helped me today, because even though I am not ready to use her info specifically, I owe her and her organization at least that. So click on Autism Housing Pathways and donate something, anything, right now, before you continue reading this. AHP is going to be one of the premier places to learn about housing models, for all sorts of people up and down the Spectrum. And learning about how to put together a home, how to leverage whatever resources you’ve got as well as the three building blocks: SSI, Medicaid, and Section 8.

Piecing together an adult life for your autistic child is not going to be easy, especially given shrinking budgets. But the thing to know is, you must face it. Now. Even if your child is 6. You think about college, you can think about this. Right now it doesn’t seem like much fun, but that’s because you’re thinking, “Ew, if it’s not college, what is it? A life of van travel and decrepit, shoestring day programs? Mall walking and group dinners out at Bugaboo Creek?

Well, yes, maybe, but also, no. I’ve said this before, but it bears repeating. You have to get past how it all looks. First of all, physical appearance is always deceiving. It’s true but it isn’t the whole truth. Nat does all those things. But he is happy doing those things. He is happy. So who am I to say it is not a good life? Because it may look, at times, pitiful?

There is no adult in the world who is as cute as a child. So it is with autistic adults and autistic children. At some point, all children stretch out and pad out into greasy awkward teens and slowly morph into crusty adults. It’s not always pretty. This is perhaps a metaphor for adult disability. It may be hard to look at adult disability at first. I’m sorry, that is a possible truth. It is how we are engineered in this day and age — to be smooth, sleek, symmetric, etc. Non-stim. All those Ableist things.

It’s not good, but it is a possible bias that is there within you and so the sooner you face this malaise, the sooner you can get over it. The ugliness is within us, and it is not our disabled children at all.

So once you know this, once you get past the strangeness, awkwardness, and all the other DIS kind of stuff, you just have a guy, a person that you need to get to know. Luckily, if this is your own child, you have not only gotten to know him, you love him, and so you are already past the awkwardness of all the DIS-related stuff.

I used to wish that people could know Nat just the way I knew him so that they would not think his behavior, his presentation, was ugly. That’s why I started writing. It was pure Mother Selfishness. I wanted the world to love Nat, not revile him.

So let’s say you are more highly evolved than me, and you are past all of that stuff. So then what’s the problem with facing that they are going to be adults with lots of challenges? You already have that in their childhood. Is the problem that you have to face that they may not go to a traditional 4-year college, live alone, work 40 hours a week, have a family?

I’m asking because I’m so different now, I can’t even remember!

Yes, I can. I still feel sad driving away from Nat’s group home! Even though I had a big hand in creating it!

But for the most part it has become so easy to just face it and go full steam ahead.

You, my friend, must plan. You must face different scenarios. You must deal with it. Emotionally, financially (start saving now, not in his name, make a special needs trust fund), and informationally. Bite off whatever tiny chunks you can, chew them, let them digest, leave them for a bit.

Then come back to your meal.

On the most selfish level, the most difficult part of having a child with a disability might just be that you have to face your own non-existence. Who the hell wants to do that?

But — need I say it? You, wonderful, lovely, unique you, are not going to live forever! Argh. I hate that.  And your child as an adult will need support one way or another. That is just a part of what his life will be.  The sooner you understand that you can and will deal with it, bite by bite, the better equipped you will be for that eventuality. And that, dear reader, is the best way you can parent and love your child.


Wow, Susan, that’s about as straightforward as it gets. Thanks for calling it like you see it.

— added by Caryn Sullivan on Tuesday, April 17, 2012 at 9:15 pm

Arghhh! But thank you for giving me that proverbial slap I so needed! You’ve paved the way for so many of us who will face these same ‘dilemmas’….
After attending Autism Awareness Day at the State House in Boston last week, I walked out of there feeling motivated as I have every year I’ve gone (10 or 11 years maybe?) but then it hit me–my Katherine will be 14 in a few short months…(where has the time gone?)….and in 6 + years she’ll be at that age too! I realized I NEED TO GET MY S$&T TOGETHER RIGHT AWAY!!!
Thanks for such GREAT posts! You are a great motivator!

— added by Sarah Conley on Tuesday, April 17, 2012 at 9:23 pm

Susan thank you so much for this information. Parents of children who are getting older are learning so much from you in this area. Please keep any information you have coming. It is so helpful.

— added by thank you on Tuesday, April 17, 2012 at 11:23 pm

I think you have been reading my mind from half way across the country:)Thank you for an awesome post and for being so inspiring.

— added by Ann on Tuesday, April 17, 2012 at 11:29 pm

My husbands aunt asked if we wanted her to set up a trust for Charlie and I said she would do better to put the money in our names, thinking that SSDI would just make him liquidate it before he ever receives any benefits after he turns 18. Am I right then?

— added by Janet bowser on Tuesday, April 17, 2012 at 11:41 pm

Susan, good information and insight. I want to mention something complementary on the topic — this is a very informative video on adolescents and adults with autism — the study has been going on for 12 years and is still continuing (Waisman Center, University of Wisconsin):

It is long, 9 parts of about 10 min. each, but well worth watching all the way to the end. Some findings may be intuitive, but some will most likely be surprising.

Secondly — Nat is 22 correct? His age is still listed as 21 on your homepage.

— added by Tim on Wednesday, April 18, 2012 at 12:16 am

Jan, you may be right there!!!! I don’t know for sure, ask your lawyer.

— added by Susan Senator on Wednesday, April 18, 2012 at 6:45 am

Great post Susan! Fantastic motivation to start doing things now.

— added by Suzette on Wednesday, April 18, 2012 at 9:36 am

And THIS is why I love you and your writing. Thank you so much Susan!

— added by Sunday Stilwell on Thursday, April 19, 2012 at 3:16 pm

Right back at ya, Doll.

— added by Susan Senator on Thursday, April 19, 2012 at 3:18 pm

Thank you Susan. I’ve been sitting here thinking about this since Tuesday. Thanks for being able to articulate the uncertainty and fear and yes, discomfort, of the whole planning for adulthood process. Thanks for the gentle nudge. Reading your blog is like sitting down with a friend who loves you enough to push you through the hard stuff and waits for you on the other side.

— added by Kathleen on Friday, April 20, 2012 at 8:23 am

Thanks! I’m just doing what I wish someone had done for me.

— added by Susan Senator on Friday, April 20, 2012 at 8:31 am

An amazing coincidence: I saw your blog on the list of ’30 best autism blogs’, enjoyed your writing (I have an 18-year-old son with autism) and then noticed that your husband is Ned Batchelder. I’ve corresponded with him, completely independently, on some Unix-related topics.

Or is it a coincidence? I sometimes feel eerily, when talking to other ASD parents, as though I am looking at myself reflected in a mirror.

— added by Carolyn on Saturday, April 21, 2012 at 11:02 am

Thank you for this, was just wondering the other day where I would start…

— added by kim mccafferty on Monday, April 23, 2012 at 3:09 pm

Susan, thanks for this very important post! We have nothing resembling Autism Housing Pathways in WI, but it is desperately needed.

My son and I have participated in the Waisman Center Autism study since 1999. It has been quite a journey.

— added by Jane from Wisconsin on Tuesday, April 24, 2012 at 5:50 pm

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