Susan Senator

A song I wrote about Joe Scarborough, who thought to link a horrible twisted act of James Holmes to autism.

Sung to the tune of Simon & Garfunkel’s “Scarborough Fair.”

Are you listen’in to Scarb’rough on air?
He’s no sage on AutisticKind
Remember he’s mean and unfair
Got no right to autism malign.

Tell him to shove it with a sickle of leather
He’s no sage on AuttisticKind
And switch his job to reporting on weather
Then he’ll be much less of a swine.

Tell him to find me some proof on his stand

He’s no sage on AutisticKind

Away from the quacks and ignorant fans

Far away from Bettelheim.

Talk show host Joe Scarborough may have issued a so-so apology to the autism community for his unsubstantiated, offensive remarks trying to tie the  Colorado Tragedy to the Autism Spectrum, but to me the real news is that we here in Massachusetts have the opportunity to do some actual work towards improving the lives of those with ASD. “Work towards improving…” are not interesting words to get you worked into a lather, and neither are “call your state rep,” but those are words that actually matter. It’s one thing to sit in a comfy chair in front of a camera and millions of similarly sedentary viewers and whip people into a frenzy over your own ignorant views. It’s quite another thing to be an elected official and sit down over a crappy pizza dinner on shitty creaking plastic chairs with parents who are not even your own constituents, just to learn about what specific improvements should be made in the lives of autism families. But this is what Ashland Respresentative Tom Sannicandro did Tuesday night at Advocates, Inc. in Framingham, with a bunch of fierce autism parents of adults, including Autism Housing Pathways founder Cathy Boyle, Metrowest Autism Alliance Executive Director Nannette Ohman, other ass-kickers, and me.

(Before I go any further, I will say that it is likely that none of the people at this meeting had autism, although of course trees don’t grow far from their apples, so… but I do often hear “Nothing about us without us,” so I feel the need to address this. Yes, it is true that autism adults who can advocate for themselves should always be part of meetings about autism services. But for those who cannot yet do so, their guardians, caregivers, and loved ones will do this for them. We cannot make wholesale dismissals of meetings that are “only” parents, because if the parents are doing the advocating — and to advocate well for your autistic loved one, you must stay in the closest contact with him to understand what he wants and needs — if the parents are doing the advocating, they are valid representatives. . As much as we all dearly wish that our autistic loved ones could be the people at this meeting, saying clearly what they want and need, it is not realistic. We need to listen carefully to our children and figure out their needs, and then we have to reliably convey them at meetings that cannot logistically accommodate them. We parent advocates need to listen to what autistic adults and our children say and need, and our children — and the autistic adult community — need to listen to what we have to say, too. We live with autism, too.)

Sannicandro told us he was there to learn about autism transition and adulthood for a paper he was writing; the state rep is in a program at Brandeis that is funded by the Lurie Center, all for the purpose of improving services and access for those with autism. But Sannicandro is one of those stellar leaders who wears most of his hats all at once:  state rep, student of autism, father, special needs attorney. He is a Force for the Good, make no mistake. (You can contribute to his campaign here, by the way.)  So we knew that whatever we told him was going to spread into the State House, too.

“What would you change right now to improve the lives of autism adults and their families?” Sannicandro asked us. The list was short but thick: 1) Have one clear, consistent entry point into the system, from the day of diagnosis throughout adulthood. Open up the silos. 2) The money should follow the person*, rather than where he happens to live (meaning, the Regions should not get to dictate where the client gets to live, but rather, the client’s needs should dictate this).  3) Funding should be according to functioning level and need, not label or IQ. Funding should be person-specific, not label-specific. 4) Funding should be portable, between Residential and Family Support. In other words, there should be a sliding scale of funding from Full Residential all the way to In-home Support. It should not be one or the other. Currently the system is: if you have Residential funding, you are fairly well set in terms of support money. If you don’t, you have A LOT less.  Either you are Priority One or you are NOT, and then God help you. 5) There needs to be a road map, a timeline, some kind of chart that families and school systems and DDS’s follow so that proper planning is done. By age 14, no later, Team meetings should be discussing independent living skill-building and vocational training, NO MATTER HOW “HIGH FUNCTIONING” THE STUDENT IS. I don’t care if you are autistic and you get high honors every time, if you’re college-bound; if you can’t understand how to pay bills, how to ask where the restroom is, how to cross the street safely, how to speak to people politely, etc., YOU WILL NEED SUPPORT AND THAT COSTS MONEY.  Kids should be trained almost from day one to be as SELF-SUFFICIENT AS POSSIBLE.

How can this list of needs be met? *Funding Follows the Person: The Real Lives Bill, H167 (was H984), would address some of this effectively. The principal behind Real Lives is that the supports, services, and housing should be dictated by the needs of the client, not the State. Only then can we have true self-advocacy. Or as in the case of a guy with Nat’s particular issues, self-advocacy with a parent/caregiver liaison.

Here is what the ARC of Massachusetts has to say about Real Lives:

The Real Lives Bill empowers people to make decisions that are deeply personal and central to how they live their lives.

The Real Lives Bill lets people choose where they live and who they live with. It lets them choose the people who they want in their lives and what type of relationship they want to have with them. The Real Lives Bill helps people with disabilities be a part of their communities.

Right now, many of those personal decisions for people with developmental disabilities — decisions that most other people take for granted — are determined by other people. The Real Lives Bill will allow those individuals who choose to participate in self-determination to take control over those choices. It does it in a responsible manner, giving individuals the support they need to make these difficult decisions.

The Real Lives bill makes self-determination available for all people who are receiving services through the Department of Developmental Services. It utilizes a person-centered funding model for the services they are receiving. This funding model is innovative, cost-neutral, and one that this state and the federal government is already moving towards.

The passage of the Real Lives Bill would represent a fundamental shift in how we perceive people with disabilities. It expresses a confidence in individuals with disabilities as self-advocates whose own desires and interests should be central to their plans and their lives.

We need to get our State House to pass this bill in the next few days, and then we will be on the road to facing the present and future for our ASD loved ones. The current system is unfair and often completely bypasses what the individual needs and wants (especially if they lack parent/caregiver advocates). As Cathy Boyle, one of the wisest women in the state, said, “This is a homelessness/prison population waiting to happen.” We have thousands of spectrum kids coming up through the schools in Massachusetts alone. The schools can only take them so far. We need real solutions now.  If you live in Massachusetts, call your state rep and your state senator, and make sure they have signed onto H167. Your autistic child will thank you — one way or another.

Today is July 10, and it would have been Eunice Kennedy Shriver’s 91st birthday. Six years ago today I was invited to a White House dinner on behalf of Ms. Shriver and Special Olympics (you can see Ned’s pictures here).  This lovely event was hosted by former President George W. Bush. I really appreciated the celebration he and his wife Laura put together for my favorite organization. Special Olympics was Nat’s portal to the rest of the world. It took him a few years to become truly open to the experience of team sports, hard physical practice, and loud crowded ceremony. Once he took that leap, he learned the most important thing in his life: human companionship is worth far more than gold. (But getting a gold medal is a great start!)

 

Remarks of Eunice Kennedy Shriver
The White House
July 10, 2006

President Bush, Mrs. Bush
Members of Congress
Stephen and Jean Case
Peter and Carolyn Lynch
Athletes of Special Olympics
Distinguished Guests

President Bush: thank you for your wonderful remarks. I could have no greater honor than to be welcomed to this amazing house to celebrate the ideals I have held so dear, for so long. And I’m sure I will not be able to express how honored I am to be here on my birthday. But I am not telling which birthday it is.

President Bush, you have been so courageous in your commitment to compassionate action, especially in your response to the AIDS crisis in Africa. And in addition to your achievements in politics, you have also managed to control Teddy, at least some of the time. PLEASE, please: tell me how you do it!

Mrs. Bush, children who are reading all over this country know you as their special champion. May they enjoy a lifetime filled with libraries, knowledge, and imagination and thank you for it. We are so honored by your gracious welcome here tonight.

Yet no matter how honored I am to be here with all of you, perhaps there is a greater honor still. Many years ago, the prophet Isaiah wrote,

If you do away with the yoke of oppression
If you spend yourselves on behalf of the hungry
And satisfy the needs of the oppressed
Then your light will shine in darkness
And your night will become like the
Noonday.

Tonight, I thank each of you for I believe that the noonday light of justice is shining around the world because of your enormous generosity. For in your dedication to our campaign and to over 2.2 million athletes of Special Olympics, you have each sought the light of the prophet.

When the athletes asked us for better health, together we answered YES, and over 340,000 athletes saw a doctor at Special Olympics! When non disabled young people asked us for the chance to learn more about our athletes, together we answered YES, and over 1 million young people welcomed Special Olympics into their schools. When families asked us for more hope, together we answered YES, and over 30,000 family leaders created networks of caring.

And most importantly, when athletes asked for a chance to play, together we answered YES to the skill, the courage, the sharing, the joy of 2,250,000 athletes in 168 countries around the world. And they have triumphed in the noonday joy of sports -— Champion athletes! Champion citizens! Champion human beings!

Mr. President, the honor we celebrate here is the honor of being part of a movement that is working one village by one village; one person by one person, one attitude by one attitude to change the world. Special Olympics athlete leaders and Best Buddies leaders and all the family leaders remind us that it is not just about “them” but about each of “us” as we journey toward being the best we can be.

Tonight as we celebrate, we know beyond us lies a dangerous world. And sadly, throughout my lifetime, it has been so. World Wars, regional wars, ethnic wars, religious wars. O that they would cease! O that we could do better than war!

But one thing has changed in my lifetime. When I was young, my sister Rosemary was told “NO.” And I remember so well as my mother sought help. Over and over again, she heard “No”—no place here, no program here, no welcome for your daughter here.

Tonight, Rosemary is in heaven, and I miss her. But despite the struggles of her life, for 86 years, she was patient and kind; she never put on airs; she never judged, she always forgave; she loved to look pretty, she savored chocolate and she made everyone happy. She taught us all that adversity meant almost nothing—that it could always be fun to be together no matter what. And I know she is joining me from heaven in thanking all of you tonight.

When we wake tomorrow, let us not forget that we have miles to go to overturn the prejudice and oppression facing the world’s 180 million citizens with intellectual disabilities. But what joy for together we have begun.

May you each continue to spend your lives in this noble battle.
May you overcome ignorance.
May you challenge indifference at every turn.
And may you find great joy in the noonday light of the great athletes of Special Olympics!

Thank you and God bless you all.

I’m feeling sad about Nat again, maybe it’s because I was trolled by a commenter in my latest Swami post. Not trolled, exactly, but judged. This person made a jab about moms who “ship their kid off to neglectful institutions so that they can have their freedom.”

I don’t know for certain if she meant me, because it is not true about me, but the point is, why the hate? Here I was, trying to express my joy with how Nat has blossomed in adulthood. In looking back, I see that for the most part, his growth has made it possible for him to understand the world better, and in turn to feel more comfortable in it. His inner comfort has led to a calmness that allows him more learning. And so, the more he learns, the more he understands, the better he feels, and so on.

I wanted my readers to know that this has been my observation, and that in fact many of my older autistic friends tell me this with regard to their own lives, and my older mom friends with grown-up autistic kids have found the same thing, regardless of functioning level. And we, in turn, have found a certain measure of equanimity and peace as we age along with our mellowed-out sons.

My happiness later in life springs from many things, Nat’s growth being one of them. My growth is another factor. Getting older has given me a little bit of perspective about life, as it does with most of us. The trade-off of losing your fresh youth is that you acquire a soothing knowledge.

I am also happier because my children are turning out nicely. And so has my career. But, yes, some of my happiness comes from having more free time than I used to, because all three of my sons are older and more independent. To my greatest delight and surprise, Nat became more independent when he left home to live in his school residence at 17. He did not “act out” once. There were some nights in the beginning where he asked to sleep at our house, and so we had him home a lot, and I came to visit him all the time during those days. I agonized over that decision for a year, not knowing what he would make of it. Would he think I was “shipping him off?” Or “discarding him like a used bellydance costume,” as another hater once posited.

I’m agonizing a bit now, too, because of that comment, as stupid as that may be. Don’t all of us worry about the thin shades of truth in any sweeping generalization? I am freer now because Nat’s not here. I did pick out a place for him to live, the structure and make-up of which was somewhat dictated by the state bureaucracy. Does that make me a callous mom? Does that make his house an “institution?” Does the fact that Nat does not live with me mean that he is living in “neglect?”

No. I know that was all sent to me in confusion and anger and the impulsiveness we all find when we hide behind our computers. So easy to wound with the Send button, to draw blood with a faceless email. I’ve done it, too.

I guess what I’m saying now is, life is hard enough. Why go out of your way to hurt people? If my truth doesn’t match yours, you can shrug and move on. Hate just doesn’t help. And I think we are here to love, because we need to perpetuate our species, and we do that by being happy and helping others be happy, too.

Riding along with Max today it struck me how happy I was. But this is typical when I’m on my bike (and with Max). Again and again, the wide open sky is my source of ecstasy. Going fast into the rushing air, or pushing up into it working so hard that my arms tingle at the summit — this is my element.

If you’ve been reading, you know this. But I mention it today because it occurred to me that I always want to be outside. I want to do as much as possible outside. I live for the hot weather, so I can be outdoors as much as possible (coffee on the porch, lunch on the porch, dinner on the porch or at an outdoor cafe). Riding, riding, riding.

Working, too. Now I leave. I am out of my house, in the world, teaching, speaking, traveling. I’ve even been involved in politics. I write controversial stuff. I’m out there, people say.

It was not always like this. When I was a young mother, I was inside. All of my hobbies were indoors: decorating, painting, sewing. I ran in place or did the Nordic track. I did not work outside the home. Even though I wanted to. One one hand I knew I couldn’t because I had the babies, Nat and Max, and I didn’t want to get daycare — not out of some moral issue, but more because I had no idea how you hired one or more importantly what my job was going to be. I imagined people working, and it was like a sitcom version. It felt unreal, impossible, far away. And far away is out there.

I didn’t want to travel. I dreamed of old trips I’d taken — out to the Northwest as a kid, to France, to Italy to Israel. I didn’t know how to do it anymore, in my late twenties, early thirties. Our only vacation was Cape Cod, safe old place.

I was so fearful. I remember being afraid, vaguely, of crowds, or stores. Of strangers, germs, sharp things lurking. I forced myself to go out, because I had small children who needed the outdoors. But I was so scared.

I was thinking about this as I rode swiftly downhill, a little scared but in a normal, thrilling way.  How different I am now. Like nothing can contain me. I go outward, and it’s not even enough. I now want to go away for my fiftieth birthday, alone.

Why am I writing about this? Because I just had to tell you that the scary alone shut-in days come to an end. You won’t always feel like this. Oh, I know you are not me, but in a way, you are. If you’re an autism parent, you probably know what I mean. (And before anyone screams and accuses me of blaming autism, just stop it. I’m not blaming our children, or autistics; but I am saying that parenting, especially with this particular disorder in the mix —  is tough to handle in one way or another and there’s no getting around that. It’s hard, that’s the truth. For our children and for us. There is so much unpredictability with autism in their lives, and thus there is so much unpredictability in our lives, when they’re young especially, so much worry. What might he do? Will he be unhappy there? Angry? Overstimulated? Will others understand? Will they stare? It’s very, very hard and we love them and those two facts exist side-by-side.) How will he be when he’s older? Should I be doing more to help him? Sweat, sweat, sweat. So much effort and stress. I just wanted to go to bed. Or at least just stay in my house, eat, and watch TV.

Sometimes it’s easier just to stay indoors. So do it, if you have to. I’ll tell you what: stay inside, but when you feel stronger, go out. It doesn’t last forever, you eventually figure it out. Just like them. Because here’s the thing no one is really talking about it — our guys, especially our guys, seem to blossom as they get older.  Not only is Nat’s adult life not a dead end, it is a beautiful beginning. And I am giving you this sugar (coat)-free.

One thing I’ve learned from Nat is that the world falls into place. Whether out of sheer familiarity, perhaps, or something more: development and education, or a steady diet of parental patience and love — they/we begin to understand more. With or without language, maybe never saying “I love you, Mommy,” having playdates, or getting a high school diploma. They really really learn how to live their lives.  The world may still be loud and unpredictable, but even that is something they learn to expect. Just like all of us, our autistic guys develop their struggle muscles and grow.

And why not? Don’t we all?