Susan's Blog

Monday, December 30, 2013

Ghosts of New Years’ Past

I am reposting from my own blog, four years ago New Year’s Day. Here’s what was on my mind, maybe it’s something you can learn from. I’m hoping it’s something I can learn from, at any rate:

The New Year is here, and with it comes the Old Fear. I keep buzzing around the issues of adult services, or perhaps these are buzzing me, tiny specks needling into my eyes and ears like gnats. But it is Nats, really; Nat’s future.

When Nat was younger, plunged deeply into the center of his school days, all I could think about — in activist terms — was that the career of the private special needs school teacher needed to be improved. Let me clarify that I am not talking about regular private schools that families pay big bucks to send their kids to. I am talking, instead, about the state-accredited private special needs schools that public school systems pay to send their complicated special needs kids to.

These state-accredited private SPED schools (which Nat has attended most of his school life) are also known in Massachusetts as “Chapter 766 Schools,” because they grew from the beloved Chapter 766, the legislation that called for every single special needs child to be given a free and appropriate public education. Chapter 766 opened the doors of the public schools to kids like Nat. And yet, Nat only attended school in our town for one year of his life; when he was six.

What I learned in all of Nat’s school years is that the public school special education (SPED) teachers had the same training as the private school SPED teachers, but earned sometimes a third more salary. I may have that figure somewhat wrong, but what I was told by the teachers themselves at the private schools is that they were always being made offers they could not refuse. The public schools would siphon them off, freshly trained in the private SPED school trenches, causing frequent turnover in staff of the private SPED schools.

The turnover in the SPED schools created an unstable situation for students like Nat, who were most likely in those private schools because the public schools could not/would not accommodate their needs (classes were too large, approach was not appropriate, etc.). So here you’d have a guy like Nat, who needs situations and people to be ultra reliable, but instead, he was getting all this upheaval.

I have been told now that when Nat is an adult, I can no longer expect any sort of skill-building for him such as we get in his IEP. Now, when he is not at his job (should he still have one) or in his DayHab, the emphasis will be on “leisure.” We all know what that means. Sitting around doing whatever he feels like doing. Utilizing his skills to the extent that he has learned them while still in the IEP years.

Nothing strikes fear in the heart of a special needs parent as the ticking of the clock. Our kids’ development is like a time bomb, where we feel nothing but dead lines and the mile stones that hang around our necks. Catch up! Lost year! Lost time! Brief window! This is our Greek chorus.

But instead of wringing my hands like Medea, I’m going to figure out how to improve the situation of the Post-22 developmentally disabled adult. I think that the place to start is the direct care workers, the group home staff, the personal care attendants. Who is working directly with your loved one? How dedicated are they? What is their level of training?

Why does the law demand that those working with Nat are highly trained, until he turns 22, and then, suddenly, anything goes as long as the CORI checks out? Why are the pay levels and training levels so different, between public education personnel and adult group home care? Do our adult children’s needs suddenly drop off? Or are we just not fighting hard enough?

Clearly the law needs to change. Extend the standards of IDEA into adulthood. Those who work with the most vulnerable must be the most highly trained. And don’t tell me it will never happen. That’s what people thought before the ADA/IDEA/Chapter 766…

This is a civil rights issue if I’ve ever seen one.

The renewal of energy and focus is what New Years are for.

Thursday, December 26, 2013

Call for Interviewees for my Third Autism Book

As some of my readers may know, I am working on a third autism book. (My two earlier books are Making Peace With Autism and The Autism Mom’s Survival Guide (For Dads, Too!). I need to talk to parents of autistic children, age 18yo +, particularly low-IQ but also any child considered “low-functioning.” If you are such a parent and you would give your legal, wholehearted consent to my using your first name, your state, your child’s first name, and his/her age, please contact me at: for an interview. The interviews will be either over the phone or by skype.

* If you are a parent whose child is in transition to adulthood, I will want to know where you are in the planning process — even if you are scared sh*tless of it — for your transitioning child. I will ask you your story, I will want to get a well-rounded view of your family life, your autistic child, and your worst fears for him/her.

* I also want to talk to parents of older adult children, particularly those in their later years, moderate-to-severe autism — fairly low I.Q. What is your family life like? What’s great about it? What’s not so great? What is your adult child like? What does he do during the day, where does he live? How have you planned for when you are gone? How did you face this problem?

The working title for this one is Autism Adulthood: Facing the Challenge Head-On.  What follows is the keynote, or summary of the book so far:

This inspiring, honest, and essential book could not be more timely considering that the big bubble of children on the autism spectrum will soon be bursting out of the public education system.

Parents are terrified of what life will be like once their autistic children graduate high school. Particularly if their child is severely affected by any or all of the following– language, communication, behavior, cognition —  parents of  graduating autistic child can be anxious, sad, and likely pretty ignorant about the future. They commonly refer to autism adulthood as an abyss, as falling off the edge of the world. And to be fair, autism adulthood can feel like a soul-sucking challenge. But autism adulthood, like any phase in a child’s life, can also be exciting and joyous. And, like autism childhood, the happiness we find is not always grand, obvious, or permanent. Parents need to know that autism adulthood can be complex and plain old hard work, it is also a time of growth  and possibility. Yes, there are terrible challenges and a lot of legwork and advocacy; autism families on the moderate-to-severe end of the Spectrum need to have an honest picture of what autism adulthood is like. With this book, they will learn from example how they can meet the challenges of autism adulthood head on, and help their adult children achieve a fulfilling life.

Autism Adulthood is unique in that it features a real family – my family– as well as conversations with other autism parents and some autistic adults themselves. The book illustrates the lives of autism adult families, particularly the families of our less-discussed severely autistic adults.The narrative unfolds as a memoir-like story, but also thematically. Punctuated by relevant anecdotes from members of the autism parent community, each part of the book describes different situations and problems that I, my husband Ned, and my son Nat faced, and their actual resolutions. Each section also looks at other families and their strategies, plans, fears, joys, and solutions to autism adulthood issues.  Autism Adulthood is one of the few books of this sort out there with a real family story, as well as portraits and viewpoints of other families, plus essential resources and organizations, told in my trademark warm, honest, and approachable style.

Thank you for letting me tell your story!

Sunday, December 22, 2013

My Notes from the Massachusetts Higher Ed Inclusion Task Force 11/13

In November I was appointed to the Higher Eduction Task Force on Inclusion of Students with Intellectual/Developmental Disabilities. I represented the Community College Consortium for Autism and Intellectual Disabilities as well as being an autism advocate, mom, and author. The following are my impressions of the hearings:

I sat on the Higher Ed Task Force hearings wearing at least two hats. The first, my oldest and most comfortable, is as the mother of Nat, my 24 year-old son with fairly intense autism. The second hat I wear is as the Director of Outreach for the Community College Consortium for Autism and Intellectual Disabilities (CCCAID). I have been immersed in Nat’s education for 21 years – since his diagnosis at 3 years old. My heavy involvement with Nat’s needs led me to become a voice for autism issues, and to write two books on the subject.

For the last two years my interests have turned, naturally, to autism adulthood. I listened to the hearing testimonies with great interest because the programs discussed served autistic and/or developmentally delayed students in transition to young adulthood.  Although my son would be considered “lower-functioning,” (lower IQ) than the students at the hearings, I felt a great resonance with the struggles and stories of the students there, and a great empathy for their situations and goals.

I will admit that I went into the hearings a little skeptical of inclusion as an effective practice in higher education. This skepticism was born of a longterm dissatisfaction with how inclusion is often done in public schools across the country: that is, as little more than a pretty theory that ends up with not much actual curriculum learned. Too often merely “blending in” is the goal. In the disability parent community, we like to say that our kids are fully included as a mark of pride, but often the ugly truth is that their special needs are being sacrificed in favor of blending in.

My experience with the Community College Consortium has also strengthened my viewpoint that targeted, rather than inclusive academic, programs are frequently more desirable for people with ID and ASD. In our Consortium, community colleges offer programs on their campuses in which the curriculum is specialized so that students with disabilities can learn the maximum. Not only is there adapted curriculum; the curriculum itself is pragmatic in nature. Consortium students get vocational training as well as independent living and sometimes travel training. One could easily argue that first and foremost, students need to be able to get a job with their post-secondary education, and to live as independently as possible. When you consider the severe budget cuts in adult services, it seems almost irresponsible not to offer practical curricula. It has been my belief that students like my son would not benefit as much from humanities and other academics. And indeed, my son has had years of vocational and independent living training, and although he is a Priority 1 with the DDS, he now works three days a week at a Shaw’s and contributes some of his income to his own job coaching and transportation.

What I heard at the hearings dispelled many of my concerns. I learned of students who took classes in drama and went on to work or act in theater. Another student told of how she learned how to write even though she used to hate it. Still others learned to travel on public transportation independently. All of these are tremendously important skills. Other students, from the UMass Institute for Concurrent Enrollment (ICE) programs went on to become students for credit at one of the colleges. A student from the POST program in Carver, at Bridgewater State said, “I was able to be myself in a way I never was in HS.” I don’t need to be perfect. I have helped others learn more about Asperger’s. I’m here to be more independent.” That took my breath away. And finally, I learned of substantial peer mentoring at these programs, which is the gold standard of student support. Students – both with disabilities and mentors who were without disabilities – testified how much they had learned from the other. That kind of lesson is of immeasurable benefit to society.

I became so enchanted with what I heard that I found myself wishing that there were programs like these for post-22 adults, too. There is so little of value that happens in the DayHabs, which is where these adults often go. If there could be programs for guys like my 24-year-old autistic son, where their education could continue, what a benefit — not just to them but for society. Think about it: if they are trained to work, they will be that much less dependent on public funding in the future. You invest in post-secondary education for adults with ASD and ID, and you end up with less needy people in the system.

In the end, I learned from the hearings something I thought I had learned a long time ago: that one size does not fit all, and some intellectually disabled students grow and learn in a four-year-college academic setting precisely because such inclusion is what they want and need. Others benefit from more separate and targeted programs but that are still on campuses (usually community college campuses).  The common denominator here is that all students need the opportunity to discover what sort of post-secondary educational experience works for them. As a result of these hearings, it is clear to me that we need to have an even broader spectrum of offerings to take into account all the varying needs of our learners with intellectual disabilities and autism.

Sunday, December 8, 2013

Yankee Swap

Nat, though seriously involved with his autism, has a good life. He lives in a small house with three other young autistic men, and they are overseen by kind, caring staff and a wonderful house manager. The house was started by three of the four families almost two years ago. I had the vision of such a place, a home near me, in Boston, close to parks and YMCA’s, restaurants, shows, etc. Roommates who were his age and had similar interests and similar challenges. They could learn from each other. They could grow together. Some people feel that there should be higher-functioning role models around for their lower-functioning children to model from, but I don’t feel that way. I think people are people and you can find something good and important in just about anyone. If you are living with that person, that is even more true. Two of the other young men would probably be referred to as “non-verbal,” and yet Nat clearly relates to them. They react off each other. They have fun together. They are his bro’s. Talking has very little to do with their happiness. However, tonight a bit more social savvy would have worked wonders for Nat.

Tonight was Nat’s house holiday party. All the families came, even siblings. We brought Ben, who seemed to enjoy himself enough with paper and pen, as well as chatting in front of the football game with one of the dads. Christmas songs were blasting. Hot dinner smells floated from the kitchen. Ned played with the staff’s little kids and the moms were all running around opening packages of goodies, setting up the guys and the other kids with gingerbread men to decorate. It was noisy, chaotic, and full of good cheer as a holiday party is supposed to be.

When we all sat down with our paper plates loaded with potatoes, mac and cheese, sweet carrots, and ham, I stood up to make a toast to the staff. I really feel good about these guys, who work so hard running all aspects of our sons’ lives, and seem to really know our guys very well. I love when I learn new things about Nat from a staff member there. Yonel even went with us on a doctor’s appointment once and really helped supplement my info for the doctor. Usually John, the house manager, comes to the doctor appointments and these days the docs talk to him more than me!

At the party, I tried to do all this justice but I know I mushed my thoughts together because of all the emotions in the room. I did manage to mention how I loved the families and the way the house is working out. We have had our bumps and false starts — like a real family — but things feel pretty good right now.

We did a Yankee Swap, which was my idea, because I wanted the parents, staff and guys to all play something together, like the pumpkin-carving we did at the Halloween gathering. In the Yankee Swap, everyone buys a $10 gift and wraps it. You don’t know who brought what. Then you each get a number and you choose a present from a pile and then you get to swap it with someone else’s — and they have to give it to you, whether they want to or not. It usually makes for a lot of laughs because men will get stuck with a pack of nailpolish (like Joe, one of the dads, did!). The thing is, with a group like us, no one is going to force any of the guys to give something back if they clearly love it. It’s always kind of hard to buy things for Nat, as I imagine it is for the other three guys, unless it’s candy.

And so… Nat’s beloved roommate D opened the sea-salt chocolate toffee we’d brought. Everyone was oohing and ahhing because of course that stuff’s lethally delicious. I didn’t think anything of it when Nat unwrapped an air hockey game, which seemed like an amazing thing to get for just $10. Nat hit the pucks around and I thought, “Wow, he likes it!” He does not usually look at the stuff he’s unwrapped unless it is food, but he seemed vaguely into the air hockey. I asked for batteries so we could try to play.

But all of a sudden Nat was asking for batteries over and over again, and hitting himself and getting upset. It didn’t take long to get him to say what it was about: D’s chocolate candy. Of course. Nat may have liked the hockey, but even $100 would have gone unwanted when you are Nat and your roommate has chocolate! If this had been a “real” Yankee Swap — and if Nat and D were not heavily disabled and truly understood what to do — Nat would have gotten it and it would have been funny. But instead it was a little heartbreaking. Maybe we could have tried to do the real swap thing but it seemed like it wouldn’t have worked.

John, the house manager, came over to calm Nat down, and Nat was really red, but he started breathing deeply as John was instructing him too. Meanwhile I was thinking about the candy. He had said he wanted the candy. That was great, because he expressed himself clearly and accurately. Ultimately, John did get him a piece.  Nat went into the kitchen to eat it quietly. The game was soon over and we started to clean up. I saw Nat on the couch and he was covering his eyes, as if he were still upset. John was with him, and he said he was fine. But he didn’t look fine to me so I came over to him and offered him cookies. Mommy and food to the rescue. Nat ate them and seemed better by the time we were getting ready to leave. We hugged goodbye and left with our odd assortment of loot and full stomachs.

I would say that it was a wonderful party but I did have that little moment of hurt for my dear son, who still can’t always get what he needs on his own. But then again, who can? And has there ever been a party with kids involved that does not have some kind of squabble? Bottom line: Nat has a lot of good people around him — an extended family, friends who understand him, and people to help him smooth out the sore spots. He has many years to grow and learn. I guess we all have to learn to deal with the small bitter taste of disappointment now and then. Good thing Nat could chase his with a piece of chocolate.

Friday, December 6, 2013

Nat’s holiday party

Here is the agenda for Nat’s holiday party.  I just got from Nat’s house manager, in regard to the holidays. My heart is just brimming with thankfulness.

(Of course they asked if we wanted to do a Chanukah activity, but I declined because it’s already over! But — I will contribute blue and silver decorations!)

Appetizers– as people arrive
Toast to the guys and the home
Dinner buffet style at beginning part of the party
Standing up the Tree
The guys will decorate their tree on Monday Night, I feel this will leave room for us to do the other activities but also provide them a time to decorate the tree the way they would like it without too many people in the house.
Ginger bread/craft activity graciously provided by M’s family
Yankee swap for anyone who would like to participate
The Yankee swap is a $10 limit, please bring a gift that could work for either Gender, the guys will participate in the same Yankee swap as all of us.  For Small children would not be doing the Yankee swap please get back to me with a head count of who is joining the group.  There will be a small gift under the tree for each of them to unwrap as well.

Below I have listed the food that we will have and ask that if there is anything you would like to sign up for to contribute it would be appreciated, and if there’s anything else you want to bring that I did not list please feel free to message me back what you will bring.

Veggie Platter
Cheese, crackers and pepperoni
Tortillas and salsa
Sparkling grape juice

Main course
Ham/Pineapple and Cherries-  Holly
Mashed potatoes
Green bean Casserole
Corn, Candy Carrots, Spinach- Holly

Others: ???

We are really looking forward to celebrating the holidays in our new home!

How’s that for a lovely holiday party?