Susan's Blog

Wednesday, January 28, 2015

The Young Autistic Man Who COULD

Number One: People grow and develop. Education works. Sticking by someone and believing in him works.

Number Two: Disabled does not mean “can’t.” It means “I possibly can, with the right supports. Give me a chance.”

I have a lot to be grateful for. 1) Nat’s tremendous growth and ability to learn; 2) Nat’s wonderful independent living skills education at the May Institute; 3) Nat’s amazing loving caregiver who lives with him in their small apartment in Boston nearby; 4) Nat’s tremendous growth and ability to learn. Lather, rinse, repeat.

Especially given the concern and worry I devoted towards Nat’s self care skills. I despaired that he’d ever learn how to even make his own breakfast, as you can read here in this 2004 New York Times article I wrote for their Education Life section.

Read the piece, and then play this video, taken this morning by his caregiver John. John merely said to Nat, “What do you want for breakfast?” while sitting on the couch, not even in the kitchen. And then Nat went ahead, as you can see. NO PROMPTS.

And now say to yourself, “With autism, never say ‘never.’ With any human being, never say ‘never.'” If any professional every tells you “He will never be able to …” you might consider walking right out of that office, and directing them to this blog post and the video below:

NAT making breakfast with NO prompts, 1/28/15

Wednesday, January 14, 2015

Waiting for the light to go on

This morning while driving I realized I was behind a van, one of those tall white ones, that transport either school kids with disabilities, or adults in day programs. The rearmost seat showed a hatted head, with gray hair sticking out underneath so I knew it was an adult van. Then I thought of Nat, of course. I remembered immediately that he would be at work this morning, in the supermarket parking lot gathering shopping carts. Small stab of pain in my chest, just the tiniest drop of sadness gathering there. Not because he is a person who has that kind of allegedly menial job. But because I wondered if he was cold. And that I had forgotten about him for the morning, until this moment.

The two thoughts merged while I waited for the left turn signal. The van in front of me became a blur as I remembered the actions I’d taken the other day, to protect Nat from being cold. I had heard from the day program that he was coming in without hat and gloves, and was wearing low socks. Right away I had talked to his caregiver John, whom I love, and who loves Nat dearly, and we’d figured out together what to do. John had then spoken to the day program, agreed about the socks, and then the day program director — also a good guy — pointed out in turn that he’d discovered Nat’s missing hat and gloves in someone else’s locker there. Problem solved.

It’s not often that easy. I often have trouble figuring out what Nat’s doing when during his week and it is no one’s fault. It’s just that he is involved with many people during his days. There are many parts to the Nat machine and keeping them all well-oiled and operative is still my job — even though I am no mechanic. I’m much better at the softer skills, the things I can see and touch, particularly when he is home with us on the weekends. I can look around the kitchen and see he has not yet eaten. Then the problem is to get him to initiate wanting to eat. That is a piece that flies away from me whenever I come near it, like a startled bird. You can never really catch those birds. I don’t know if I will ever get Nat to consistently ask for what he needs, let alone just take it. I am the proponent of “With autism, never say never.” And I’m not saying “never,” but I am seeing initiation for Nat with a big sigh blocking it. And I’m just as much an obstacle, because I love mothering in certain ways, and jumping to make a fun meal for him is one of my favorites. So the Goals and I seem to be at cross purposes.

Sometimes I feel that Nat and his adulthood, and I are at cross purposes, actually. I’m supposed to let him go, and be in the world independently, with the help of others and only sometimes me. But how in the world does one pace this type of thing? And yet it is happening, because I had indeed forgotten about him until I saw the van.

All these thoughts were tumbling through as my vision blurred and the van was a shadow. I thought, I am at such a loss about this letting go thing, because I am torn between wanting him to be a successful adult and with wanting him to feel like he still has the love and protection of his mother. Many of you are shaking your heads, smiling wryly about how I hover, or how Nat is so grown up and I just can’t see it. But do you realize that it hurts — hurts — to think that he might indeed want me more in his life and then finds that I’m not!

So there was that little pinch in my heart, that’s what it was. And then it kind of popped, like a blister, and became something else. For right there, next to those fast moving scurrying ant thoughts along came another memory, creamy and slow, like lotion in a bottle, almost run out: I realized I was at the very corner I’d been 24 years ago, where I was supposed to meet Ned and Nat (after my appointment nearby). And sure enough, Nat had materialized there, swaying atop Ned’s shoulders. Wobbily joyous. Then his face had lit up even more because he’d recognized me. There was that wide goofy baby smile. He was so glad to see me — but he had been happy without me, too.


Tuesday, January 6, 2015

Breaking News: Congress Aiming At SSDI

This information below comes directly from the Arc of the United States. The new Congress is now stealthily pushing to reduce Social Security Disability Insurance benefits by potentially 20%!!! Taking aim at the most vulnerable, most under employed sector of the US population. Is that fair? Here is the information from the Arc:

The Arc Action Alert: SSDI Under Attack Today: Tell Your Member of Congress to Vote No on House Rules

On the first day of the new Congress, proponents of cutting Social Security have hidden major disability program changes in an unrelated, routine package that sets the rules for the U.S. House of Representatives.  These changes to the Social Security disability program have not been considered in hearings or open to input from constituents.

As Members of Congress are organizing for the new session, the rules governing debate and procedure in the House must be approved.  Tucked in this package is a provision that takes off the table a routine shift in Social Security revenues needed to prevent a 20% cut in Social Security Disability Insurance (SSDI) benefits in 2016.

This vote is happening this evening – call your Member of Congress now to support SSDI.

In 2016 Social Security’s disability fund will face a long-expected shortfall due to demographic trends such as the nation’s aging population.  Since Social Security was enacted, Congress has “reallocated” payroll tax revenues between the retirement and disability trust funds – about equally in both directions – some 11 times, on a bipartisan basis, to account for such demographic shifts.

The House rules package would hold SSDI hostage by putting up roadblocks to another routine, common-sense shift in Social Security revenues.  Unless Congress acts to temporarily increase dollars going into the disability fund, in 2016 SSDI beneficiaries will face a 20% benefit cut.

Instead of having a meaningful debate about the future of Social Security and SSDI, House leadership is seeking to make major policy changes that will affect millions of people without hearings or input from their constituents, essentially in the dead of the night.

Call your Member of the House of Representatives today and ask him/her to protect SSDI and vote NO on the House rules.

The House rules package contains a harmful provision that could force cuts to Social Security, including Social Security Disability Insurance.
People with disabilities rely on this program for basic needs – any cuts will have a devastating effect on our/their lives.
This major policy is being done without hearings or input from your constituents, essentially in the dead of the night.
Vote NO on the House rules package when it comes up for a vote today.