Susan's Blog

Thursday, March 31, 2011

How to brag about your autistic kid

In circles other than my autism world, I find myself at a different starting point with regard to Nat.  It seems I got a lot of ‘splainin’ to do.  These days everyone has a someone with autism, and so that particular experience informs theirs.  It is difficult to dislodge people’s perception of autism, and of course, that is one of the things I live for:  changing the world to make it a better place for people who have similar challenges to Nat.

Last night I had a teaching opportunity, and I blew it.  I was not prepared, even though I knew it was coming.  I was at a shiva, which is a post-funeral Jewish gathering similar to to the Catholic wake.  I had just met a man who was friendly and interesting and we got around to the subject of our kids.  “My guys are 21, 19, and 13,” I said.  Wait for it, wait for it —

“Oh, so the 21-year-old.  Done with college, off on his own…?”

D’oh, and it had been such a light and bouncy conversation until then.  “Well, no, he has pretty severe autism, so…”  Here’s one tip:  don’t be elliptical.  Don’t dot-dot-dot.  Offer your most impressive news first.  Here’s what I should have said, “Well, no, he’s been working for a while.  About to move into his own place.  He’s got pretty severe autism.”  This way, I keep myself — and Nat– on equal footing.  I don’t want no Goddamn sympathy.  Or if I do, I choose the moment when I get it.

No, I didn’t think on my feet.  They guy kind of blanched and said, “Oh, that can be SUCH a burden, to think about his future… I have a friend whose daughter…”

I let him talk.  It was a shiva, after all.  He was wearing a yarmulke, for God’s sake!  I’m kidding, because I feel bad.  I should not have let him refer to someone even remotely like Nat as a burden.  Only I get to say he’s a burden!  Or something like that.  Here’s autism parent tip #2:  Cement your loyalty to your kid.  You already love him.  You would not trade him for the world.  So go with that.  And then, think about what you are proud of, make a list right now.  I’ll help you start:

My autistic kid is:

1)   Really cute

2)   Funny

3)   Unusual, interesting

4)   Thought-provoking

5)   Loves life

6)   Gives my life a challenge

7)   Does not hide his feelings

Let’s all start being really brave.  Learn from my pathetic example.  And I don’t mean tell-people-off brave.  That’s easy, as tough as it is.  Being a bitch is the low-hanging fruit.  The greater challenge is to stay with them, assume they are well-meaning, and then rise above what they are saying and show them – don’t tell them, show them, gently but firmly – that they have it wrong.   I think that it is our duty – no, it is our privilege – to teach the world about our guys, to lessen the misery out there.  Yes, autism spectrum disorders – or, to use the language that the Neurodiversity crowd employs – behavior issues, social challenges, and the other  co-morbid symptoms that often accompany autism – are a challenge and even horrible at times.  But that is not the news.  Scoop everyone with your own positive story.

Wednesday, March 16, 2011

Letter from Sendai

Hannah’s mom Cynthia sent me this letter from a friend of a friend who is in Japan at the moment.  It just took my breath away.

Subject: Blessings

Hello My Lovely Family and Friends,

First I want to thank you so very much for your concern for me. I am very touched. I also wish to apologize for a generic message to you all. But it seems the best way at the moment to get my message to you.

Things here in Sendai have been rather surreal. But I am very blessed to have wonderful friends who are helping me a lot. Since my shack is even more worthy of that name, I am now staying at a friend’s home. We share supplies like water, food and a kerosene heater. We sleep lined up in one room, eat by candlelight, share stories. It is warm, friendly, and beautiful.

During the day we help each other clean up the mess in our homes. People sit in their cars, looking at news on their navigation screens, or line up to get drinking water when a source is open. If someone has water running in their home, they put out sign so people can come to fill up their jugs and buckets.

Utterly amazingly where I am there has been no looting, no pushing in lines. People leave their front door open, as it is safer when an earthquake strikes. People keep saying, “Oh, this is how it used to be in the old days when everyone helped one another.”

Quakes keep coming. Last night they struck about every 15 minutes. Sirens are constant and helicopters pass overhead often.

We got water for a few hours in our homes last night, and now it is for half a day. Electricity came on this afternoon. Gas has not yet come on. But all of this is by area. Some people have these things, others do not. No one has washed for several days. We feel grubby, but there are so much more important concerns than that for us now. I love this peeling away of non-essentials. Living fully on the level of instinct, of intuition, of caring, of what is needed for survival, not just of me, but of the entire group.

There are strange parallel universes happening. Houses a mess in some places, yet then a house with futons or laundry out drying in the sun. People lining up for water and food, and yet a few people out walking their dogs. All happening at the same time.

Other unexpected touches of beauty are first, the silence at night. No cars. No one out on the streets. And the heavens at night are scattered with stars. I usually can see about two, but now the whole sky is filled. The mountains are Sendai are solid and with the crisp air we can see them silhouetted against the sky magnificently.

And the Japanese themselves are so wonderful. I come back to my shack to check on it each day, now to send this e-mail since the electricity is on, and I find food and water left in my entranceway. I have no idea from whom, but it is there. Old men in green hats go from door to door checking to see if everyone is OK. People talk to complete strangers asking if they need help. I see no signs of fear. Resignation, yes, but fear or panic, no.

They tell us we can expect aftershocks, and even other major quakes, for another month or more. And we are getting constant tremors, rolls, shaking, rumbling. I am blessed in that I live in a part of Sendai that is a bit elevated, a bit more solid than other parts. So, so far this area is better off than others.  Last night my friend’s husband came in from the country, bringing food and water. Blessed again.

Somehow at this time I realize from direct experience that there is indeed an enormous Cosmic evolutionary step that is occurring all over the world right at this moment. And somehow as I experience the events happening now in Japan, I can feel my heart opening very wide. My brother asked me if I felt so small because of all that is happening. I don’t. Rather, I feel as part of something happening that much larger than myself. This wave of birthing (worldwide) is hard, and yet magnificent.

Monday, March 14, 2011

Good News: MassHealth Cuts On Hold

Recently, I blogged about a serious threat to adults with developmental disabilities who wish to live as independently as possibly, and in their communities rather than in institutions:  cuts to MassHealth.  The particular programs singled out to be reduced were Adult Foster Care, which provides funds for live-in caregivers to keep people in their homes, as well as DayHab, which provides therapeutic day programs to people.  I also sent a letter to Governor Deval Patrick in January about this same issue.  And on February 22, I went to a hearing with perhaps 60 other adult service providers and clients to give testimony about how devastating these cuts would be, and how mean-spirited they are, considering how little real revenue the specific cuts would give back to Massachusetts.  (I say cut the MCAS spending instead, the Massachusetts Comprehensive Assessment “System,” which is really just one standardized test that determines graduation in Massachusetts!!!!!  The citizens of poorer towns and cities, ESL students, and students with disabilities tend to be penalized and kept from graduation because of the MCAS, regardless of how they perform in their entire career of school.)

Anyway, today I got word from The Arc of Massachusetts that the MassHealth cuts are on hold.  Here is the text of the Arc message:

Thank You Governor, Secretary Bigby and MassHealth Director Dougherty!

After listening to stakeholders, the administration has decided to hold on the MassHealth rate reductions for Day Habiltitation, Adult Foster Care and Adult Day Health. A special thanks to the Governor and his administrative team.

Although the possibility of reductions during this fiscal year continues (through June 30), we hope that they will be less likely as each week progresses. Thank you to those that helped educate our leaders about the impact of the reductions.

For 2012, we need to look to our legislative leaders and the rank and file, who supported our programs for this fiscal year. We need to make sure that the programs are fully funded.

We encourage you to thank Governor Patrick, Secretary Bigby and Director Dougherty. We appreciate the time they took to meet and review the issues as well as their responsiveness.

Thursday, March 10, 2011

Sweet Tension

Every weekend that Nat is home — and we are now starting to wean ourselves from that pattern, to prepare Nat and ourselves for Post-22 November — there is tension.  This is not to say that the tension is Nat’s fault; it is no one’s fault.  It is a dynamic.  Maybe I shouldn’t say “there is tension,” using the passive voice.  Because the thing is, it is I feeling the tension.  I am, and maybe Ben.  Nat and Max:  birds of a feather, ducks with water rolling off their backs, or some such foul analogy.

I feel the tension because I know Nat so well.  I know what he is looking for when he runs upstairs and then runs back down.  Well, actually, I don’t know why he runs upstairs first; maybe to burn off some of that high-octane energy of his.  But I do know why he runs down:  to check on everyone else’s routine.  I have written about this many times.  Nat gets very focused on what others are doing given a particular time of day, and he repeats to them what he believes they should be doing — over and over — usually until they do it.

We have been schooled over the years not to give in to this kind of behavior.  This may seem high-handed and centered on us and what we want, rather than on what Nat wants, but it actually is not, because giving in is sometimes actually escalating to Nat.  Nat often craves the safety of a firm remark, the closure of crisp, stark-edged reassurance:  “Nat, I will eat my eggs after my workout, and you have to stop talking about it now.”

I feel tense as I wait for Ned to finish whatever he is doing on the computer at any given moment, so that he can deal with Nat.  The tension happens with Ned because I usually anticipate Nat’s anxiety and I structure some of my routines around avoiding that.  I am a a wimp and I have failed Behavior Modification 101.

Ben also feels the tension.  He used to run away or capitulate at once, running to put on his shoes the minute Nat said, “Ben will put on his shoes.”  Even if Ben wasn’t going out.  I get a creepy feeling when I think about Ben feeling forced to do this unnecessary thing just to keep the peace; kind of like someone being forced to dance when a bad guy shoots the ground, saying, “Dance.”  Or a hostage who has to give the criminal all of his stuff.  I hate seeing loved ones humbled.

Now Ben makes faces at Nat when he is being bossy.  Or he mimics him.  I have such mixed feelings when I see this.  On one hand, I am so glad that he is no longer a victim, that he stands up to Nat, who is a foot taller and very strong.  But on the other hand, I feel bad for Nat who may be confused as to why Ben is shoving his angry face into Nat’s face.  Does Nat feel bad, like he is being harassed, or teased?  Is this just, that Ben should do this?  It makes me very uncomfortable.  I often say, “Ben,” with a little bit of exasperation in my voice.  And he’ll say, through gritted teeth, “But he’s SO ANNOYING!”

Nat just looks at him and blinks, but what does he think of that?  And what does Ben think — that I feel bad for Nat and no compassion for him?

The other day, however, I thought of a new thing to say:  “Ben, does it ever help to remember that he does stuff like that because of his disability — that his neurons have grown together kind of wrong, and they are making him really anxious?  What does that feel like to you, to think that way.”

Ben’s voice was rough and quiet:  “Uh, it makes me feel really sad,” he said.

“Oh,” I gulped. Oh. My. God. “Yeah, I know,” was all I could say, because my heart was in my mouth.

Tuesday, March 8, 2011

Don’t Tell Me I Can’t

Tonight I gave a brief talk at the Boston University School of Education, an event to mark the “Spread the Word to End the Word” campaign.  The End the Word campaign originated with Special Olympics and Best Buddies, is about raising awareness of how misuse of the word “retarded” is painful for people with developmental and intellectual disabilities.   This isn’t about PC.  This is about how name-calling hurts and is a bad thing.

What is worse, however, than calling someone a name is limiting someone based on a label.  Tonight, the speaker who followed me was Jack Kelly, a man in his sixties, who has Cerebral Palsy.  Jack is an avid football and hockey player, a coach, a teacher, and an all around good guy whose message to us was, “don’t tell people they can’t.”  Jack was lucky to have parents who were teachers, who knew what the human mind was capable of, and so they rode him hard to become successful.  Jack’s dad was a Notre Dame man, so football was really important to him.  So Jack and his dad tossed a football “every night,” said Jack, and that could not have been easy, with CP.  Jack’s mom worked hard with him on all of his academics, and he eventually graduated from Salem State University.

The point here, though, is not his credentials; it’s his moxie.  He grew up in a very different time than Nat.  No ADA, no IDEA.  He could only get what he pushed for.

He was told he could not play football, even though it was his (and his dad’s) favorite thing in the whole world.  Even though he knew how to play.  He went to doctor after doctor, all of whom said, “No, he shouldn’t play because he’ll get hurt.”

Jack’s mom said, “He could get hurt walking across the street!”

Finally they found a doc who said, “Let him play!”  And Jack played.  His teammates tied his pads on, and made sure they were tight.  He can’t remember today how often they won, but the point is, they played.  He now has taken his game to Special Olympics, where I’m sure he is kicking people into shape right and left!

Jack asked the audience at one point, why it was that parents get so devastated when they learn their child has a disability.  He pointed the question mostly at me and the other speaker, another mom (the others in the room were professors and students).  I got to thinking, because it was fascinating to me that he, as a son, did not understand why a mom or dad would feel anger and denial about something that has been a part of him his entire life.  He actually shouted the question at us.

Afterwards I sought him out.  I told him what I thought.  “It is probably because they’re terrified,” I said.  For most of us, it is not about vanity at all, or not getting what we thought we deserved out of life.  For the most part, we react so strongly to the news of our child’s disability because we are terrified for them.  We don’t want our child’s life to be hard.  We don’t want our child to suffer.  And disability seems to signify that to so many.  I won’t pretend it isn’t true.  Nat’s life is going to be and has been hard.  Just existing in a world you don’t easily comprehend can be hard; and when others have expectations of you that don’t make sense, that’s hard, too.

Nat’s life is also going to be hard for me, and for Ned, as we try to find him supports in his adulthood.  His life has been hard for his brothers, who have to live with the fact that they will never have a conversation about Little Big Planet or Mario or Myst or this teacher or that girl, with him.

There are so many things we can all imagine that we don’t get to do.  The list is exhaustive and exhausting.  You can just make shit up on the spot about what you don’t get, what you can’t do.   Or you can be like Jack Kelly and say, “Don’t tell me I can’t.”

Please Take Action

To my readers,
I am thinking of organizing a March on DC to restore the proposed cuts to the budget.  I don’t know how to do that, but I want to gather all concerned parents and citizens to protest these cuts.
This week, Congress could cut a deal on the budget. And if Republicans get their way, billions will be cut from programs that millions of Americans count on – while tax cuts for the richest are protected.

But most people don’t have any idea what’s at stake – and how devastating these cuts would be to their communities – even though the cuts could take effect within weeks. So to help sound the alarm, MoveOn pulled together a list of the top 10 worst things about the Republican budget.  By the way, one item that should have made the list:  billions to be cut from Medicaid, which is the only program for many many developmentally disabled adults that will give them something to do with their days, as well as live-in help to enable them to avoid nursing homes, institutions!!

Check it out here.

It’s really awful. Share with anyone you can to help get the word out and stop this terrible plan.


Monday, March 7, 2011

Lord of the Rings Birthday Cake

Max’s 19th birthday is coming up on Wednesday, March 9, but the family (and Hannah, his girlfriend) could not coordinate schedules, so we celebrated tonight, with a Lord of the Rings cake:  The Shire.  Max is rereading LOTR, and so is Hannah.  Naturally I enjoyed this endeavor with mixed feelings, happy for us, delighted in the cake, but sad that Nat was not here; he loves frosting.  I will give him a can of it when I see him next.

Tuesday, March 1, 2011


Something highly unusual for my family has just happened, and I want to share it:  I was just given exclusive rights to publish my son Ben’s poem.  He is 12.  He is not on the autistic spectrum, but is solidly on the artistic spectrum!  Enjoy!

By Benjamin Batchelder

Let’s take a walk
My little friends
‘Tween the curly trees
Down the path that bends

Come along, keep up
For these woods be strange
You will get lost
And there you will change

Locked in the forest
Forever and ever
You will wander and trip
‘Till you pass to the Nether

Your soul will wither
Your limbs will grow slender
Best catch up quickly
I hear souls are quite tender…

The Demons of Wood
They scream and they hate
You’ve got one chance
To be free of this fate

Oh no, it appears
Your time may be up
The Demons of Wood
It is now that they sup.

In short, you are hopeless.
Hopeless as dust.
So keep up with me,
You must…
You must…

copyright, 2011, Fraxinus Redlektab, and Susan Senator