A couple of years ago I began thinking about “The Miracle Worker.” Specifically that moment when Annie Sullivan realizes she’s never going to get through to Helen Keller while she’s at home and her parents indulge her and give her candy whenever she starts to have a tantrum.

If only we had a teacher who could take Alex away for two weeks — reach him and teach him, put him in TV detox.

Little House by the Apple Tree (photo by Uncle Phooey, flickr.com)

I’m ashamed to say Alex does not eat with us at the table. He has some other behaviors we don’t like (constant TV-watching, for one) that we’ve allowed to become entrenched. I guess we might just as well have allowed him to wander from plate to plate, grabbing whatever food pleases him.

It began to seem as if Alex does have some things in common with Helen Keller: he’s so hard to reach sometimes. We’ve let certain things slide because it’s just easier. Inside him is an intelligence that’s something to reckon with, and it’s easy to overlook with the rocking and sparse language. If it’s hard for us to get in, I think it’s just as hard for him to get  out.

We watched “The Miracle Worker” the other night because Ned has been reading about Helen Keller in school. This time,  my reaction was mixed. Instead of cheering Annie Sullivan on I thought she was a bit harsh, a bit impatient. I wish she had been more willing to spend a few days just getting to know Helen. Everyone — the mother, the father, Sullivan herself — was a bit wrong and a bit right.

The parents definitely underestimate Helen and indulge her. But they love her. And they want a teacher who’s able to achieve a more affectionate relationship with her. Sullivan definitely wants Helen to communicate and learn. But she’s so rough. It was more painful than I remembered.

Even so I’m left with the sense sometimes that if Alex is going to come out of his shell it won’t happen at home where we indulge him and give in to him because it’s easier and we’re tired. It will happen with some teacher, somewhere, sometime — questions I obviously have no answer to.

CareGiver360 was created by Ken Ziel, a Colorado father whose son has a range of developmental and physical disabilities. Ziel was inspired to create CareGiver360 from his experiences raising a son with an array of special needs and trying to communicate all of those needs to multiple care providers.

“When providers left or new providers came in, I could see that the process of being brought up to speed and adapting to new procedures was just as hard on the caregivers as it was on me and (my son) Austin,” Ziel said.

Caregivers can also use the tool to streamline updates in care procedures, treatments and conditions.

CareGiver360 creates “care guides” tailored to the unique needs of those receiving long-term care, and streamlines and safeguards critical information to caregivers. Families are able to share a record of a loved one’s care, condition and personal preferences. New care providers can use the guide to become familiar with their care recipient.

The idea came one evening after Ziel and his wife left Austin with a caregiver to go see a movie. “The amount of time it took to go over all of Austin’s care instructions with the caregiver, and the anxiety it caused my wife and me, was incredible,” Ziel says.

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The National Autism Association provides relationship-coaching tools at no charge to qualifying couples who have a child with autism.  Couples in need will receive a book and DVD presentation at no charge. To qualify, couples that have a child with autism should write to lori@nationalautism.org outlining their special circumstance. Qualifying couples will then receive both the book and DVD in the mail. Lifetime partners that have a child with autism also qualify. Counseling funds are also available through Family First. To apply for a $500 grant towards marriage counseling, couples can visit www.nationalautismassociation.org/familyfirst.php.

1. Elmo (sadly) remains a favorite. Maybe it’s just a comforting habit now; he doesn’t seem riveted the way he did when he was younger.

Photo by Kitten Fleming

2. Chocolate chip cookies. (Never-fail recipe secret here!) Equally enthusiastic about homemade and freshly baked or dusty old Chips Ahoy.

3. Prefers homemade brownies. The first time he had them, on Christmas Eve about four years ago, he followed me around for about an hour saying, “Brownie? Brownie? Brownie?” (Note: After several different recipes, I’ve settled on the sublime Katharine Hepburn brownies with an added half-teaspoon of almond extract.)

4. The part of “Arthur’s Pet Business” where Arthur’s baby sister Kate wails. Loudly. He loves to rewind to this part. Sometimes I hide that tape for a few wail-free hours. It is permanently seared into my brain.

5. Have a hardcover book with dust jacket? Alex will thoughtfully separate them for you. (He’ll also slip the bookmark out, so I’ve gotten in the habit of glancing at the page number.) If it’s a library book and the jacket is in the plastic slipcase glued to the book, Alex will rip it off. I don’t know why he does this. Usually he looks for things that go together and reassembles them (like slices of watermelon).

6. Bathtime. Warm water, splashing, no one to bug him (we’re usually watching TV while he bathes) — what’s not to love?

7. Alex loves repetition and predictability. A bookstore provides both in the form of endless shelves of similarly shaped objects and copies of his old favorites, which he revisits for a satisfying hour or so.

8. The epitome of order and routine — with accessible shelves of books to boot — school is such a favorite place that Alex often stops at the locked doors of whatever school he happens to be passing on weekends and holidays.

9. We might be going to a suburban supermarket, a Westchester museum or Stew Leonard’s. Alex is always up for a car  ride. (We occasionally rent from Zip Car.)

10. Sometimes it’s the farm yard assortment of ducks, cows, chickens, geese; other times lions and tigers and elephants entice him. Either way, plastic animals remain a source of great attraction.

1. Alex’s sweet nature. He chatters and babbles if he doesn’t get his way and he does kind of run around in the house but his wants are fairly simple. Will work for chocolate chip cookies. Is delighted with a trip to Borders.

Photo courtesy of Jelene (flickr.com)

2. Great excuse not to do things. “Oh, we’d love to… only YOU know. Alex.” Smile wistfully. Shrug. “We just can’t.” Gets us out of various family things or social events we don’t feel like going to.

3. Blessed silence. Of course I love when my children talk to me. Alex rarely does and sometimes that’s a plus. We can sit together in companionable silence without the constant wall of sound you get from some kids.

4. Great excuse for being late. “Alex couldn’t find his favorite book.” Acceptable, because everything with Alex takes longer. If he talked, it wouldn’t take as long. But he doesn’t. Of course sometimes it really is his fault. Quite often, really. So don’t think we’re just using him as an excuse whenever it’s convenient. We would never do that.

5. Free babysitting. Because of Alex’s Medicaid waiver, a respite worker comes every Saturday evening for a few hours to take care of him while we go out.

6. We get to meet a lot of people and parents we wouldn’t have met otherwise. Alex’s last service coordinator is a wonderful young woman who left the service world to go into fashion.

7. Automatic respect from people who say, “I could never do it!” because they’ve never had to. They’d be able to - they just don’t know it, so they think there’s something special about you.

8. You slow down and look at things very carefully - words on a newspaper page, water splashing in a fountain, alphabet blocks - and appreciate more details than you saw before.

9. No longer worried about buying a lamp that you can’t figure out how to turn on. Alex can figure out any light fixture.

10. The purest birthday celebration. Last year we had cupcakes and lemonade in one of Alex’s favorite playgrounds. We’re planning a repeat this year with a slightly larger group.

“We fear for Alex as he grows up and maybe comes to depend too heavily on a system that was built when there was a lot more money around. Is there a reason to suppose that a money shortage is going to abate just because Alex is closer to 21 years old than he used to be?”

I wrote this in my second book. For a long time, I thought I was the only one thinking this way. Then I ran across the recent piece by Linda Davis, who in addition to being the author of Charles Addams: A Cartoonist’s Life, is president of the nonprofit SAGE Crossing Foundation, which was formed to create a farmstead for autistic adults. David and her husband wrote what should become a classic piece to every parent who fears for their growing special-needs child.

“What coming social expenditure will cost more than a third of this year’s budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?” the authors posed. “Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually.”

Image: artnet.com

Read this thing (available on site, among others, at http://www.concordmonitor.com/apps/pbcs.dll/article?AID=/20090407/OPINION/904070328). Among the points: the number of autistic children expected to need extensive adult services by 2023 is roughly equal to the population of Minneapolis; most of these cognitively impaired citizens don’t vote, can’t live alone, or can’t work in public places; and, perhaps most critical, “the wrecking ball swinging at all levels of social services” may alter what we assumed was the standard care in their future.

I grew up thinking that if you’re sick or impaired, someone will take care of you. For years, not being sick or impaired, I assumed it’d be the government (my parents loved FDR). After Alex, I assumed it’d be one of the agencies in the sub-strata of support that seems to have mushroomed below the federal level.

A few years ago, though, I began wondering deeply and often what budget will be left unaxed to help Alex the young adult. I live in a city, and as I passed the doorways and the park benches, not looking at the men living there, I began to wonder more.

“I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become,” Davis writes, wondering “who will love or at least protect (her 22-year-old son) when he ends up in a group home run by an underpaid, overworked staff.”

Jill tells me, when I mention my fears for Alex’s fate, that she’s the one person on earth - Alex’s mother - to whom I can’t voice this wonder. And I can’t, and then I feel lousy when I do. But somebody should start wondering, and soon.

I was going to write about Passover and how preparing Alex is going, but I came across the picture of our living room and felt so embarrassed I immediately wanted to share it with complete strangers.

I’m not the most rigid mom in the world, so I don’t get rid of toys that often. My feeling is, if they think it’s entertaining, I want them to be happy. Being happy for Alex means taking all toys he’s interested in at the moment and strewing them carefully around the living room. Being happy for Ned means taking out toys and never putting anything away.

Though our sons are 8 and 10, we still sing the “clean up” song on occasion, until it devolves into screaming and yelling to just pick stuff up. Sometimes I feel as if there’s hope for Alex because he never walks by a door without shutting it. Bureau drawers remain resolutely open, however, after both boys have taken out a t-shirt or a pair of socks.

Hard to sort out how much of the mess is autism and how much is just boys, but I have to throw in that a few nights in a row when I don’t get enough sleep (and that I CAN lay at autism’s door) mean I have no energy at all to clean or throw stuff out.

With Passover coming, though, I have a renewed vigor for decluttering and cleaning. I doubt we’ll ever get to my imagined blissful state of one toy and one book per boy, but I know that Alex can be happy with fewer toys.

Change.org has been running a competition to vote on the top Ideas for Change in America. The competition ends on December 31st—-yes, that’s Wednesday—and here are three ideas that I think can clearly make a difference in the lives of autistic individuals:

Fully Fund Medicaid Waivers for the Developmentally Disabled

Replace No Child Left Behind With a Strong Education Policy

Independence and Services for Disabilities and Autism

The top 10 ideas will be announced in January.

(For discussion about the idea about the “Autism Reform Act,” see this post on autism legislation.)

It’s said to be something that parents of children with developmental disabilities experience. An article by Amy Basking and Heather Fawcett coins the terms “Empty Nest Envy,” as noted in today’s Orangeville Banner:

While most parents can look forward to children spreading their own wings, there are some who look to the future with trepidation and uncertainty. Not just for themselves, but more importantly for their adult children who have developmental disabilities. These parents, when their children graduate from high school, suddenly find themselves supporting their adult child full-time.

The reality for these parents can be daunting. In the article, the authors talk about how for one family their 28-year-old son remains with them. Despite thinking that he would be living on his own with supports at this age, the reality is that he will probably remain with them “until one of us dies or we’re in crisis.” This couple has little time alone and never the opportunity to holiday away together.

Another mom, who is 60 with a 30-year-old son with autism, is quoted as saying, “When the kids graduate there is nothing but endless applications for funding. I can’t afford to retire. I have no savings. I’ll retire when I drop dead.”

The just-this-week published Easter Seals Living with Autism study reports that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home and I do wonder what wil happen for Charlie. Sure I think a lot about, advocate for, how to provide more housing for disabled adults, more jobs, more and more and more: But how to turn needs, advocacy, testimony, research, into realities? Into an actual place for Charlie to live when he’s older, with the supports that he’ll need?

Let’s say, I don’t want to have develop empty next envy. But it may well be inevitable.

Today Easter Seals is unveiling the results of its Living with Autism Study. The study was done in cooperation with the Autism Society of America. 1,652 parents of children who have autism and 917 parents of typically developing children were surveyed about daily life, relationships, independence, education, housing, employment, finances and healthcare. The results are summarized on the Easter Seals blog:

The Easter Seals Living with Autism Study results reveal parents raising children with autism are very concerned about the future independence of their children. In fact, they’re far more concerned than parents of typically developing children — nearly 80 percent say they’re extremely or very concerned about their children’s independence as an adult, compared to only 32 percent of other parents. This is especially true when it comes to their financial independence, quality of life, social and inter-personal cconnections, and employment and housing opportunities — and with good reason.

Autism is a growing public health crisis, and families are desperate for solutions and resources. Easter Seals and others in the autism community are doing their best, but current systems, structures and resources to help people with autism and their families do not adequately meet the growing need, especially for adults with autism.

Today’s Chicago Tribune provides more details:

The study by Easter Seals found that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home. Only one-fifth of children 16 and over with autism are employed, compared to 75 percent of people that age without developmental disabilities.

And children with autism under the age of 18 are far less likely than typical children to take advantage of some of the basic tools of modern society, like cell phones, bank accounts and credit cards.

We’ve got to start thinking and doing right now to address these more than pressing concerns: There has to be housing and trained staff and jobs, if autistic adults who need such services are going to have access to them. And we have not only to teach autistic children about using cell phones and ATM cards and managing their bank balance, we have to think that they can and will learn these things.

I really think that a first step is, indeed, believing and knowing that autistic children can learn all those things and that if they’re not, we need to trying different ways of teaching, and learning how they can best learn. Too often I’ve seen my son not learning something (after weeks, months, and years) and every time it’s been because the same old teaching methods were being used, and Charlie was making the mistakes and minimal progress.

Yes, we’ve got a lot of work to do, and what if we start by thinking, it’s not just that a child is not “getting something,” but we’re not “getting” how we can change ourselves and teach them in ways that best suit their ways of learning?

A potentially double-good plan involves (1) preserving one of the last strips of undeveloped land within Dubuque’s city limits and (2) creating a residential facility with an on-site farm for autistic adults: Today’s THOnline tells more about an effort to preserve green space and provide a place to live, and to work, for autistic adults. $985,000 has to be raised to purchase the property and the whole project could cost some $2million, so there’s a lot more to do. Says Craig Beytien, whose autistic son is 15 years old, “‘We’ve got the passion and some ability, but does the economic model support it?’”Goes without saying—hoping that it can, and will.