Freezing the Future

What are your long-term plans for Joy? asked her grandfather.

We were up at the family cabins for the long Memorial Day weekend, and we'd been very happy with how things went for Joy, compared to the struggles we've sometimes had in previous years. But she turned seven while we were there, and one can't deny that she needs an awful lot of assistance for a seven-year-old -- diaper changes, constant close surveillance lest she dart away or eat something dangerous, lots of interpretation given that she speaks few words (and not many of them clearly).

So, what will we do when she grows up, assuming that serious issues still persist?

Short answer: We don't know.

Longer answer: The "not knowing" got a whole lot scarier this past week, here in Wisconsin.

You see, while you have a certain "not knowing" with any child -- What will I be? Que sera, sera! -- of course the "not knowing" is automatically more intense with developmental disabilities. Joy is fortunate to have access to a lot of services right now, between her guaranteed public education through the age of 21, and the autism insurance that pays for therapies. We also get respite care and other services via a Medicaid waiver for children's long-term care services that helps families like ours keep their children at home rather than the institutionalization that was the norm not so many decades ago. (Many children are on a waiting list for that waiver program -- we are SO fortunate in that regard.)

But both the schooling and the waiver run out when Joy reaches adulthood, and the program that would offer the next step, long-term community-based care into adulthood has been FROZEN by Wisconsin's budget committee.

Wisconsin has been making great strides in the past years when it comes to community-living services for frail elders and people with disbilities, primarily through a program called Family Care. The top goal of Family Care, according to the Wisconsin Department of Health Services, is

Giving people better choices about where they live and what kinds of services and supports they get to meet their needs.

The Family Care program provides Aging and Disability Resource Centers to help people figure out what assistance is available, and then (for those who qualify),

the new Family Care benefit, which combines funding and services from a variety of existing programs into one flexible long-term care benefit, tailored to each individual’s needs, circumstances and preferences.

Depending on the person's need, services might include things like: adult day care, home modifications, home delivered meals, supportive home care, health care services, daily living skills training, day treatment, pre-vocational services, supported employment and more.

But in the slash-and-burn budget that is coming down the pike, the expansion of Family Care is slated to halt. As of June 30, new Family Care enrollments will stop, and people will go on waiting lists instead. This freeze will last the entire biennium, during which time waiting lists are expected to DOUBLE.

The majority-party nay-sayers on the budget committee (the Joint Finance Committee, for those folks keeping score) figure that families will figure out ways to pick up the slack for the most part -- caregiver quit her job & stay home, anyone? -- but meanwhile they've set aside some funding to put people in nursing homes in case of emergency. Talk about going backwards!

For a family like ours, the "not-knowing" is looking across a span of years yet, with frightening consequences if the trend continues. For Wisconsin families and youths currently planning their transitions out of high-school and into the adult world in the next couple of years? This is a calamity, right here and now.

A new grassroots effort called Wisconsin Families Forward is looking to avert the calamity as the budget containing the long-term care freeze moves on to the full legislature.

First, Wisconsin Families Forward is conducting a survey of families (Urgent deadline, June 3!!) to discover how it would affect people to not have the services there when their young-adults needed them:
http://www.surveymonkey.com/s/wilongtermcarecap

The Wisconsin Families Forward group also has a Facebook page!

The group is encouraging people to contact their legislators -- the budget goes to the full legislature next, so there's one last chance to lift the caps.

There will also be press events around the state; the one in Madison is Thursday, June 9, 10am at the Capitol.

We've got to keep telling the stories!

==========

Those of you who have been long-time readers of this blog know that after Memorial Day weekend, I have great fun with the post-getaway wrap-up blogging. I promise, there will be such a post -- perhaps not such a cliffhanger as last year, but with some special excitement nonetheless!

When I Get Older

When I get older,
I will be stronger
They'll call me freedom
Just like a waving flag...
-- Theme Song from 2010 World Cup, performed by K'naan

At Rose's school, the second and third graders are doing an Africa-themed social studies unit and concert. One of the songs she has introduced to us is the South Africa World Cup theme song from this past summer, a song called Waving Flag:



When I get older, I will be stronger.

In the mouths of second and third graders, it's an encouraging note for the future.

Sung by adults, it's encouraging in another way (with maybe just a hint of "when I am an old woman, I shall wear purple!")

I want this encouragement to apply to both my daughters.

The other Friday, I had the opportunity to hear a brown-bag presentation by Dr. Paul Shattuck, autism researcher and professor of social work at Washington University of St. Louis. He's on the cutting edge of a new trend in autism research -- a trend that recognizes how very much autism-research-attention has been devoted to children and how very little to adults.

He's been working with data from a U.S. Department of Education study called the National Longitudinal Transition Study 2. This study has been following a huge sample of young people receiving special education services, starting with youth age 13-16 in the year 2000. They followed the same youth for ten years, with five sets of interviews at 2-year intervals. The interviews (with parents/guardians and with youth who are able to interview) explore special education experiences and the students' transition into post-school, adult life. There are over 900 youth with autism in the survey.

Dr. Shattuck and his team have been analyzing data from the fourth set of interviews, from 2007 when the youth were 20-23 years old.

A couple of findings in his presentation stood out for me.

One was the comparison of services received before vs. after high-school graduation. As one might guess, there's a substantial change and drop-off. Most dramatic: speech services. Fully 75% of the sample with autism received speech services in high school. Of those who had transitioned into adulthood? Sudden drop to 9%. Because magically at age 21 the need for speech therapy goes away, right? Yeah, not so much. It's all about the service system -- schools provide the therapy, insurance and adult services don't. (The way autism insurance is written in Wisconsin right now, speech therapy IS covered for adults, by the way. I wonder how many will be able to take advantage of it.)

The other big one: Dr. Shattuck looked at how many of the post-high-school contingent were completely disengaged -- that is, no employment, no career counseling, volunteer work, education, vocational training, outside commitments, nothing.

That number was 20%. The only other subgroup in the study with a slightly higher number on that score were the young adults in the "mental retardation" category.

The disengagement level was hugely associated with family income level. Only 3% of the young adult autists from families making over $75,000 were totally disengaged. In families making under $25,000, the number was 36%.

It makes me wonder a lot of things. One thing I wonder is what exactly it would take to bridge the engagement inequities -- which of course exist amid so many other inequities.

I also wonder... what's the ideal? Surely the appropriate engagement level varies from one person to another. I don't suppose total disengagement can be spun as a good thing, although there are probably hermits and mystics throughout history who might disagree. But I'm guessing that there are as many forms of ideal as there are adults with autism.

I also wonder what the engagement level was for those who didn't fall into that totally-disengaged category. How many have just one small lifeline into the outside world, for example, versus those with multiple means of engagement?

I also wonder what this survey would look like with 30 year olds. Or 40 year olds. Or beyond.

I also wonder how different / better / worse things will be for youths with autism who are ages 13-16 in the year 2010.

And finally, I wonder what will be the outcome of something else that Dr. Shattuck noted. He spoke of the valiant lobbying efforts of the many families who helped drive the cause-and-cure research that has been where the money and effort has poured -- and pointed out that many of these parents now have kids in their late teens. He sees some of these people turning their well-honed talents to lobbying for adult services. A trend worth watching -- and worth supporting / joining.

I hope for all of us that we will continue to find our strengths as we get older.

There Was A Little Girl

The other night, JoyDad and I got to spend some quality time with Joy. Rose was off with friends for the whole evening, and Joy was delightfully happy, and playful, and interactive. At one point JoyDad sighed and turned to me and said, "When she's being sweet, she's just so sweet!"

Which was funny, because I'd already been plotting a post around a rhyme I'd remembered from my childhood:

There was a little girl,
Who had a little curl,
Right in the middle of her forehead.
When she was good,
She was very good indeed,
But when she was bad she was horrid.
-- Henry Wadsworth Longfellow

Masterful use of slant-rhyme (forehead/horrid) -- I guess it makes sense that it comes from a master, though I hadn't known it was Longfellow's work until I went looking it up for this post!

Not that the concept of being good doesn't set my teeth on edge. Sweet behavior and core "goodness" are very different things, and we conflate them at our peril. It's even worse to assign good and horrid intention to a child whose behavior is surely coming from causes we don't fully understand...

I gotta say, though, Longfellow's little ditty captures something of the contrasts we've been living with Joy lately.

When we're having our good moments, she lets us record her singing, and then sings along again and again as we play it back! She smiles, she giggles, she initiates interactions, she's truly a joy to be with.

The bad moments lately, as I mentioned in my transition post, are rather scary things to have happening as we head toward kindergarten: head-banging, and hitting and hair-pulling.

Take Saturday, for example. Saturday afternoon Joy got up happy from her rest, and we went to a gallery opening. (Elites that we are.) Actually, it was a home-grown art show, engineered by an enterprising mama who'd been doing a home-based art camp for her daughters and then displayed the results on the walls of their home and made an event of it. The girls are in the same grades as Rose & Joy; the older one is on Rose's soccer team, and the younger will be in Joy's kindergarten class. So far, Joy is the only classmate that younger-daughter knows, and the family has been capitalizing on the fact that there'll be at least one familiar face!

Joy was willing to let me lead her around as her classmate-to-be proudly showed off work. Then we found some Joy-appropriate toys in the play room where she happily settled, despite rather a crunch of other kids romping and making noise. She loved the snacks: crackers! blueberries! grape tomatoes! We ended up staying for almost two hours, with nary an outburst or protest in sight. (OK, she did make one break out of the yard to try & play with a sprinkler on the other side of the cul-de-sac. But other than that.)

This was a different girl entirely from the one her morning autism-therapist encountered. Joy gave him one of the roughest sessions she's ever thrown at him -- he's usually a favorite for her. He could hardly make the slightest request of her without getting an over-the-top frustration reaction. Several of these involved Joy getting down on her hands and knees and trying to pile-driver her head into the floor.

The head-banging. Oh my, the head-banging.

We have a whole bag of calming tricks, which we shared at a meeting with her school team yesterday. These include:

• singing
  
• soft calm talking
  
• slip a pillow or thick quilt under her head
  
• change of activity / distraction
  
• silly/fun people games
  
• glider rocker
  
• Baby Einstein MP3s/CD
  
• change of venue
  
• sit in highchair
  
• chewies
  
• pillow squishes
  
• bouncing on therapy ball
  
• back off / alone time
  
• pressure to the head / body-sock on the head

We've been trying very hard to take a thoughtful approach to this, trying not to panic, working to figure out the behavior and keep things from escalating, praying that the switches will slide sooner rather than later. From a behavioral perspective, the headbanging does seem to be a frustration reaction, even though sometimes it doesn't take much to set it off. ("Okay, Joy, let's go potty now"... BANG.) We also suspect there's a big sensory component. Some pressure -- quite a bit of head pressure -- feels good. We'd like to get her to choose other forms of expressing frustration, such as pressing her own hands to her head, or stomping her feet.

Of course the question of a helmet has come up in our thoughts. How could it not? There's almost an easy-fix feel to the idea of wearing a helmet... at least keep the wearer physically safe, then we can figure out what to do about the behavior itself!

Alas, this is one of those truly not-simple things. My thinking on the helmet-question has been profoundly influenced by Kristina Chew, who has written a lot about her son Charlie and self-injurious behaviors. Their experience with head-banging in the past couple of years has taken them through full-time helmet wearing at one school, to a much better experience and very-occasional helmet wearing at his current school.

I'm going to quote a particularly relevant paragraph here, from a post of hers that's well worth reading in its entirety:

One thing I have learned from all this is that often the most obvious solutions just treat the problem people see, without addressing the deeper causes. Thus did the school district (and their lawyers) insist that Charlie wear a helmet. But that blue plastic apparatus has been the equivalent of a putting a band-aid on something serious that requires much more examination. The "protection" offered by the helmet was limited at best. As Jim and I predicted, Charlie banged his head harder while wearing the helmet (which makes for really big holes in the walls). He probably started banging more while wearing the helmet (in part due to the discomfort of the thing?)

Joy hates having things on her head. Won't wear hats, won't wear headphones, no earmuffs, no sunglasses. We're lucky that she is willing to accept a hood on her parka, because winters can be brutal around here.

Imagine the frustration level that could be caused/escalated by forcing Joy to wear an apparatus on her head -- when she's frustrated!

No easy answers. Fortunately the good times far outweigh the horrid, even if we spend a disproportionate time agonizing about the rough stuff.

Onward to kindergarten. Our little girl has her first day tomorrow, at a public school with a fine reputation. We like what we know of her team so far. Ready or not, here she comes. Keep thinking those good thoughts for us!

Transition

I've got a whole list of posts swirling in my head to write -- I guess I ought to at least get something written, and maybe the rest will fall into line in the coming days.

It's interesting -- in the world of developmental disabilities and special education, the word transition has come to have a specific meaning: it's the big Transition from school out into the adult world. There are transition-planning manuals, and transition-planning conferences, and transition-planning laws (in Wisconsin, for example, transition planning has to start in the IEP team at age 14, and at that age the student must be invited to participate as a member of the IEP team.)

Heh.

We've got a huge transition going here, folks, but it's into school instead of out of it.

Transition-into-kindergarten planning for Joy started a couple of years back, when we made the decision to wait an extra year, so that with her early-summer birthday she'd be one of the oldest kids in the class instead of one of the youngest. Back in February, I described the steps we took to get Joy some formal kindergarten practice, spending several hours of each Tuesday afternoon at the school with her early-education therapists.

In April, we had a big summit at the elementary school to put together Joy's IEP, the Individualized Education Program that spells out goals for the upcoming school year, and what services she'll receive that will help her work toward those goals. Looking back now, I guess I never did blog about that meeting. It was a huge meeting -- Joy is going to have a LOT of staff working with her. She's going to have one-on-one attention all the time, safety reasons being paramount but also because that's what it's going to take to work with her in a classroom -- and the school district seems to have quite the commitment to working with kids in the regular classrooms, as much as ever possible.

So far, things seem to be falling into place pretty neatly. Joy was assigned to the teacher whose classroom she got to know in the spring, a fellow with a gentle demeanor who has been assigned clusters of kids with IEPs for the past couple of years. One of her (typically-developing) classmates will be from a family we're in good contact and on good terms with, so that's a fine development. Her special-education lead teacher has had the chance to visit her at daycare for a couple of hours, and will be visiting at home the day before school starts to get acquainted. Joy has had a couple of visits to school, seems comfortable in the classroom (at least when there aren't any other kids there, heh), got to meet the new principal, and got to try potty-routine in the hall-bathroom.

We've got another summit with school staff coming up Monday, not an IEP meeting but a chance to share a home-grown document full of details about the amazing progress Joy has made over the summer, and tips for lunch, and a list of the songs she knows and can fill in words for.

And a list of the new challenges. There are some big ones, and it's more than a little scary.

The top two are: head-banging, and hitting/hair-pulling/pinching of peers and adults.

Just what you want your kid to develop in the months before kindergarten, no?

I think I'll just leave that there. These are switches that we desperately want to flip the other way, as soon as possible. A new environment and routine might do just that -- or it might escalate these behaviors to whole new heights.

Meanwhile, this is all quite a major transition for me. I wrapped up my summer-job yesterday, so I will truly be going back down to half-time again, as opposed to the 75% time that I've been squeezing in for close to a year. All those work hours will now take place during school hours, so I can do drop-offs and pick-ups for both girls at school, and eliminate the need for after-school paid care. A very different routine for me.

Think good thoughts for us. This transition may not be THE big one, but it's pretty much the biggest one so far.