Monday, May 25, 2009

Special Events

This lovely picture is the view from my favorite seat on the beach at Pineridge Resort in Parham, Ontario. The water and across the water a rock cliff and hill of green trees--lovely!

I love to camp, I live in a family that loves to camp and sometimes we go on a vacation where the only thing we will do is camp and the only people we will see, for days at a time, are other campers. In fact, these times make up some of my family's most cherished memories...

When I tell people that we go camping no one tells us we shouldn't.

At the same time no one makes us go to restaurants just for campers, or a mall just for campers. We are not required to live in a camping neighborhood, have a job just for campers, or attend camper church...

Most people would consider that ridiculous.

Yet when it comes to disability this sort of all-or-nothing thinking is everywhere.

There are folks who believe in all inclusion, all the time. They view any gathering for people with disabilities as segregated and feel every segregated activity steals time and resources from integration. They would never consider telling scrapbookers that they couldn't hang out with other scrapbookers. They would never consider telling Presbyterians they shouldn't spend time with other Presbyterians. But a group of people with Down syndrome is anathema to them.

I think these folks go too far.

At the same time, there are people investing tons of hours and bazillions of dollars trying to create systems for education, jobs, housing, recreation and transportation for people with disabilities that never allow contact with people who do not have disabilities. They create a "special" universe so encompassing that it is possible to go months without any contact with poeple who don't have disabilities except for your staff and your own family. You want exercise? They create a special exercise program. You want worship? They create a special worship service.

I think these folks also go too far. (In fact, there are folks building the same all-encompassing systems for the elderly and I think that is a mistake too.)

I think both of these extremes are very isolating.

To me it seems that all people need BOTH types of experience in their lives: All people should spend a percentage of time with folks who share their interests or characteristics, AND all people should belong to the greater, more diverse community.

It is a question of balance. You could compete in Special Olympics AND run with a local running club. Or live in your own home, work for any local corporation AND belong to a Self-Advocacy organization--or the other way around: work at a sheltered workshop AND be active in your neighborhood association--and your church.

And, in real life, that balance shifts. Prior to the Christmas pageant you might spend every waking moment at church... in the summer you spend less time there and more in your neighborhood at cook-outs...

My friend in Texas saw Dr. George Capone this weekend. From what she says,he spoke about health and adults with Down syndrome. My friend said he reported that depression in people with Down syndrome is a strong predictor of Alzheimer's disease, and he feels that a strong preventor of depression is healthy relationships with the other folks with disabilities. (He often presents at the NDSC conference which is in Sacramento this July--check him out!)

Food for thought...

Sunday, May 24, 2009

The Kobayashi Maru: Lessons About NVLD from Down Syndrome

This is my favorite Star Trek scene, from The Wrath of Khan where Kirk says, "I don't believe in the no-win scenario." Well neither do I!

As I have mentioned before, my son has a diagnosis of Non-Verbal Learning Disorder. For some unknown reason (though Karen has a theory!) I always posted more about Down syndrome than NVLD (or NLD as some folks say) until recently. (Here is the link to my first post on NVLD)

As the parent of a child with Down syndrome who was diagnosed at birth I had some definite advantages when my son was diagnosed with NVLD in the 4th grade. I had many connections in the local disability community, had expunged any disability prejudice that clouded my thinking, and I knew a lot about development, advocacy and rights. There is lots and lots of data available about Down syndrome and nowadays most of it is positively stated. And there is a well-formed and experienced community of families of people with Down syndrome to guide newbies along.

Parents of children with NVLD diagnoses get NONE of these advantages out of the gate. It is really pretty pitiful.

So, I want to offer a disability primer to ease the learning curve a bit for you. Some of this is mindbending stuff because of the society we live in, but trust me, if you get your head around this stuff you and your child will both be better off!

First about disability in general:

As it says in the DD Act:
Disability is a natural part of the human experience that does not diminish the right of individuals with disabilities to enjoy the opportunity to live independently, enjoy self-determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural and educational mainstream of American society.

For more about the natural-ness of disability read here.

Disability means that part of your body works differently. Not better or worse, just differently. Some folks see, hear, get around or learn differently. There is no heirarchy--my near and farsightedness (!), my son's diagnosis of NLD, my daughter's diagnosis of Down syndrome and my friend's Cerebral Palsy are equivalent.

The sooner you come to the decision that disability is FINE, the better off you will be and your child will benefit from your belief in them--doubt is poisonous and they will get plenty of that from others. Too much fighting the disability gives the strong message to the child that they are not ok... and if you exhibit pity or unacceptance for other disabilities your kid will make the jump that disability (and they themselves) are bad. It will help all of you to get past this!!!

Now, about experts: Down syndrome is a chromosomal issue and there are literally hundreds of possible symptoms. No one with Down syndrome exhibits all of them--or even most of them! Down syndrome plays out differently in every single individual. As my friend Laura told me when my daughter was born, "When you know one person with Down syndrome, what you know is one person with Down syndrome!"

Because I know tons of families, I know there is a range and expect individual strengths and needs that don't necessarily follow a 'Down syndrome profile.'

When it comes to NVLD the literature implies that folks all present the same way. This is dead wrong. I know several people with the diagnosis and they are all quite different from each other. They sometimes have some commonalities, but they are all unique individuals.

The literature about NVLD is also FAR more negative than anything you read about Down syndrome nowadays. I think this is because it is a newer diagnosis. The literature out of the 1970s about Down syndrome was terribly discouraging as well, but has grown as clinicians, educators, parents, folks with the diagnosis and others have gained experience.

Trust yourself and trust your child FIRST. Be defiant about it! This is a medical diagnosis, it is not a script.

You will build a life that suits your child, you will stand up to naysayers, you will challenge systems that don't work, you will problem-solve and you will create--and your children will learn that from you.

You can do this.

Repeat after me:

You can do this!

Saturday, May 23, 2009

Attention Parents of Young Children with Disabilities: The Fight Club Video and the Community Choice Act

There is a horrible video from an institution for adults with disabilities in Texas where the employees forced the residents to fight for their entertainment. I know many parents of children who say they didn't see it and won't ever see it because it is so upsetting.

In a lot of ways I don't blame them a bit. It isn't that they don't care, it's that they hope to change future of the disability community by putting all their energy into building up their own child and helping them be the best they can be.

I applaud their efforts--I have done (and do) the same myself.

But because of this focus many parents don't get involved in disability issues, don't call congress or sign petitions. And this is a shame.

You know what the worst part about the "Fight Club" video out of the institution in Texas is?

It wasn't Willowbrook. In the legendary Willowbrook expose from the 1970s the facility was run down, the residents weren't dressed and few had had any education at all...

In the Fight Club video of 2009 the place looked decent, the men looked clean and modern and well dressed, many or all had clearly been taught much--they could speak and more.

And still they were victimized.

Like every other parent who watches that video my very hairs are standing up on end, screaming, "NO, NO, NO... NOT my child!!!! Please no..."

The sad truth is that to create the world we want for our children with disabilities we have to do more than bring them up. We must participate in creating the situations that will receive them.

We must get them ready for the world AND get the world ready for them.

The good news is we don't have to kill ourselves doing this. We don't have to make it our full-time (or even part-time) job. There are many, many ways to be heard and make a difference without becoming overwhelmed--honest.

First: get yourself a decent source of information. You don't need to watch all of the videos and read all the hours of congressional testimony yourself, but you need to pay attention to someone who does.

The National Down Syndrome Congress, The American Association of People with Disabilities, The Arc and more have government newsletters and send out action alerts to let folks know about the important issues.

Second: Read the e-mails you receive. Or at least a percentage of them (LOL!)

Third: Take an action. Make a phone call, write a letter, fax something. These are all short actions that add up to big impact. If you feel the need and have some energy to invest, join a committee or visit a legislator (or more than one.) Don't burn yourself out, just pick an action and do it.

Fourth: Forward the e-mail to your friends and family and ask them to help.

Right now there is a problem with Medicaid. It easily covers institutional care--it wants to pay for care to be given in institutions or nursing homes. It does not cover care in individual homes. (They call this institutional bias.)

This is a problem for people with disabilities (who get medicaid when they are unemployed, or considered uninsurable by their employers' plans) and for older folks who want to stay home as they age.

Now, care at home in neighborhoods is better. No one drives past an institution of any kind and wishes they could live there.

It is cost effective. They estimate that community living costs around 1/3 less per person than institutional care.

And if the nightly fighting from the Texas video had been happening in a neighborhood home SOMEONE would have heard it and complained.

Call your congressmembers. Tell them the Community Choice Act matters to you.

Creating the future your child will thrive in begins at home--and in the world.

We can do this together.

Let me know how it goes!

Thursday, May 14, 2009

Transition is an Obstacle Course

My idea for this post far exceeds my technical expertise (and my patience, I'm afraid!), but...

I hate transition. Actually I don't mind transitions so much, but Transition (with a capital 'T') stinks. I hated it when my daughter had to make the leap from Early Intervention to school, and now that she is moving to high school and adult living is the focus of everything at the same time that my son has a Transition plan to ready him for college I REALLY hate it.

But I am paying attention, Gentle Readers, and I am figuring out the path so I can pass the scoop along to you. The following is the grand tour of what I have gleaned so far:

The Transition Obstacle Course

Start: You begin in the Playground of the Past. It is familiar there, but it no longer fits. Your child has outgrown the slide and the swing and the sandbox, exceeded the age and height limits. It's time to go. This can be a happy or sad moment depending on how well it ever worked for you, but there WILL BE some emotional backlash. Prepare yourself.

Next: The Ladder of Information--this is a VERY high ladder with widely spaced rungs. The first rung will be the propaganda (brochures, etc) about your future options. Next will be their reputation in the community. Your next info will come from personally visiting the place or places and right up near the top is the rung called 'the inside scoop'. This rung is helpful, but may not exist in which case you will have to jump over the space--just don't look down.

At the top of the Ladder of Information is a high diving board. You will jump off the board and land on the Trampoline of Gut Feelings. If you are like me you will bounce around on that for a while.

From the Trampoline of Gut Feelings you must jump and land with one foot on each of two scooters (the wooden seats with wheels we used to use in gymclass--I will try to find a picture!) The two scooters will immediately roll away in opposite directions bringing you to the Split of Decisionmaking. Any compromises, contradictions, uncertainties or inconsistencies you encounter will roll the scooters further and further apart.

After the Split of Decisionmaking we move to the Hoopjumping portion of the course. Here you will encounter 3-10 hoops of varying heights and sizes, and any or all of the hoops can burst into flame at any time. At the very least you will encounter the hoops of qualifications, applications, and justifications--there may be more and you won't know about them until they are in front of you.

After Hoopjumping comes Platespinning wherein you will endeavor to keep all of the applications and information moving while the powers-that-be deliberate the fate of your child. This can be a very long phase. Very long. And exhausting--exciting background music helps.

After Platespinning you will be dumped into one of two destinations:

The Mud Puddle of Rejection from whence you will towel off and start all over again, or...

The Swimming Pool of Acceptance. You will swim in this pool for a bit, getting the feel of things. If it turns out to be a lovely, fun, idyllic swimming experience you will then leave the game.

If, however, the Swimming Pool of Acceptance turns out to be a filthy pit of vipers and sharks (or Fight Clubs) it's back to the beginning for you! (Note: some folks opt at this point to stay in the scary pool because going back through the obstacle course seems more grueling than dealing with the sharks...)

One major benefit I have found is that I do not have to face this course alone. There are people who can help make this obstacle course easier. There are Transition Specialists and Transition Projects around the country and I find great help from other parents of kids with disabilities...

And yet I still hate it.