Wednesday, December 24, 2008

Family seeks a great nation

I wanted to encourage folks to check out Mark's blog. It is really cool. He has spent some time working on policy issues (check out his profile and myspace page!) I read his article about military families having difficulty getting health care for children with autism and felt connected to military families in a new way-- we have a shared struggle when it comes to our kids. 

A few things are clear to me as I struggle to find resources and services for my daughter. We are all in this together, in a terribly isolated way. We have a shared struggle but not yet enough organization. 

First, every agency and health corporation has a stake in denying services to her. They know if they deny, they protect their budget, and "someone" will cover her needs-- or more likely the family will give up. For example, in trying to get a speech generating device for our daughter, we orginally went to the school. They denied, so we went to Regional Center (in our state, they are funder of "last resort".) Regional Center told us to appeal the the school, school tells us to appeal to Regional Center. For three years we got stuck in this loop. 

Second, for profit health insurance companies make money by denying services. A percentage of our premiums go to shareholder payouts-- money that could be spent on health care in a non-profit or single payer system. It is wasteful and inefficient if the purpose of health care is actually to provide care. A single payer system may not be perfect, but at least we would not have the conscience crisis of knowing that kids were denied health care so that share holders could get their cut. 

I know I am stumbling into a partisan issue here. But I want to raise this issue. Strict constitutionalists are against interpreting the general welfare clause to mean, well, welfare. Consider this though. The maternal mortality rate in the 18th century was about 25% -- read that as one in four women died giving birth. And the infant morality rate was even higher. My grandmother a century later had thirteen babies. Eight survived to adulthood and of those, six died of influenza during the Spanish American War.  Adults typically died in their forties, often with "their boots on" from illness, accident, warfare and, yes, age. Senility was rare. Most of the diseases we think of as age related (Alzheimer's, Parkinson's, cancer) were unknown. Who lived long enough?

We are so far removed from the experience that we simply cannot imagine it. 
We today are heartbroken (understandably) if one of our children dies. Parents sue obstetricians frequently if a child is born with CP or another disability that might be attributed to a birth injury. My father died at 60-- before he retired-- and we were shocked. He was so young. He should have had many good years left...

And it is hard to imagine that Jefferson, who lost his wife to childbirth, could imagine our world, where perinatology and neonatology have advanced to the point that premature babies of 28, 27 even 26 weeks sometimes survive. That they survive at all, and thrive, even with complications and disabilities like visual and hearing impairments, respiratory ailments, intellectual disabilities, is an artifact of medical science and social change. Or that someone with a spinal cord injury could live... for twenty, thirty or even forty years. 

The founders could not imagine this. And it is hard to know how they would have approached the social issues that these advance raise. At a time when the solution to an economic downturn was to follow the calvary west and claim newly depopulated lands, shoot a quadriped and put up the meat and wild vegetables for winter, when people like my daughter would have died young due to bedsores, seizures, starvation... it is hard to know what they would have seen as solutions to our current dilemmas. 

How would they have resolved the sanctity of life versus the spirit of independence and individualism that we attribute to them? We have a few clues. One clue is that when social issues were too hard to resolve, they left them to the states and future generations to solve. Like slavery. And women's voting rights. And the states and private charities took some of these issues on. And created great institutions like orphanages and insane "assylums." I guess they really did not want to deal with it either. 

I think we will have to think for ourselves. Be the grown ups in our own time. I am fully in favor of drawing on the wisdom of our ancestors-- but also recognize their short comings. How can we use the checks and balances, the evolved powers of the administrative and legislative branches of government to solve the deeply challenging problem of caring for the vast numbers of children and adults with disabilities? How can we do better than they did?

One thing I am sure of-- one of our great adaptations as a species is our ability to cooperate, form social networks, divide labor and work together to build societies. Animals solve some of these problems by eating their young and banishing adults. Humans build hospitals and fund Medicare.

Now we need to think carefully and talk together-- as if we really wanted to hear each other-- about what kind of society we can make. 

Because my family can't move any further west in search of game and a place to live. We are already in rough seas, nearly over our heads. And we need a social network worthy of our daughter.

Free books online

Fantastic resource with books published and downloadable online. Books on mental retardation, autism, educational policy, accessing SSI. Many new or current resources. Check it out.

Tuesday, December 23, 2008

I've been looking for resources for students in secondary educaiton, in transition, on their way to college and in college. I found this resource this morning and the database of free accessible technology is a real resource. Definitely worth checking out.

Monday, December 22, 2008

I found this site this morning as I was trolling the net. I highly recommend it. Great resources and a wide perspective of news and events related to special education. Resources as well, and even the ads are relevant.

Sunday, December 21, 2008

Pre-Natal Testing

I just finished reading "New Era, New Worry" (Carmichael, Mary. Newsweek, December 15, 2008). The article explains the positions of the Allards, who have a son with Down's syndrome. They support more Down's Syndrome babies being born. 

Prenatal testing has become a disability rights issue, because as Newsweek put it, non-invasive genetic testing could "result in more diagnoses, more abortions, a dwindling Down population and a drop in support for families who carry to term. 

The Allards have had a good experience raising a child with a disability, and they want more people to know that it is possible to raise a happy, healthy child with a disability and maintain a strong marriage and family. The concern is that people with Down's syndrome will have a shrinking community and less support. 

That would be like having a child with a rare disability. 

Our daughter has a rare genetic mutation that affects about one in 10,000 live female births. It is nearly universally fatal in males. Still, we do enjoy a wider community and network than friends of ours who know of exactly 17 children in the world with their son's disability. 

When we learned that our daughter had a disability, after watching her develop normally for 18 months, her baby sister was three months old, not yet weaned, and I was just allowed off bed rest after complications from a C-Section. 

All hell (no, really not heck, it was living through Hell) broke loose. Our first child went from a happy contented baby to a screaming, sickly child with degestive problems, self-abusive  behaviors, and screaming, screaming, screaming, sometimes 10 hours a day. 

"Babies just don't cry ten hours a day, I know it must feel like it sometimes, but that just is not possible," said my family doctor, whom I still love to this day. She simply could not conceive of what we were living through. No one did for two years, until I found out about her syndrome online. 

Ten hours not possible? I was the one who walked her around the block from mid-night to 5:34 AM (sunrise) in the sling so that my partner and our newborn could get some rest. He took a sick day and did the same thing, pacing the living room floor with her in the colic hold, putting her down to scream while he fed the baby, pacing pacing pacing so I could sleep. 

We decided not to have any more children. 

Then we learned that she had a genetic mutation that can be screened prenatally. After long midnight talks and much soul searching, we decided to try again, with the understanding that we would terminate a pregnancy if the developing fetus had any genetic diseases that we could screen for. 

We are pretty lucky, we have a strong family, we still love each other, we both have good jobs and health insurance, three great kids, and a wide community of friends that we have made as parents of a special needs child. But it is not the life I choose. We make it work, and we embrace our child, and we fight for her. But I would never wish this life on anyone, least of all another child like her. 

Every family, every mother, every child, every disability, is different. Even disabilities that are the same are different individually. I know a child with Down's with a (rare) complication-- a spinal malformation that left him a quadrapalegic on a ventilator. And I know children with my child's disability who, unlike her, never walked, never ate, have feeding tubes and intractable seizures. 

We have been relatively lucky, at least as far as bad luck goes. But that is the thing about genetics. You NEVER know. It might be the good kind of down's syndrome, or it might be pretty severe. Yes, we still know a lot about supporting people with Down's and by and large have changed the natural history of the syndrome dramatically for the better. 

But being a parent of a special needs child is no picnic. In fact there are fewer picnics, merry-go-rounds, and play dates for many of us. And a lot more medical appointments. 

This has to be an individual decision. I support everyone who has a child with a disability, whether they chose that or not. I know how hard it is. 

And I support women who choose to terminate a pregnancy when they learn of a genetic mutation that is disabling. Only they can know they factors that impact their decision. And they can only make the decision with complete information-- unbiased, complete information. That includes the full prognosis for better and worse.

For me it was painful, but simple. I would not subject another child to this, not even to create a community of support for mine. 

But Down's is not like her syndrome. And I hope that the Sarah Palin's of the world will rise up and join the rest of us who have been struggling to fund and expand IDEA for years. For her son, and for my daughter, and the rest of the huge community of families that love a child with a disability.