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Opening Doors

  • Posted on February 17, 2014 at 10:00 AM

I’ve discovered a handy PDF file created by the State of Wisconsin called Opening Doors. This booklet helps parents, teachers, and students navigate the transition from high school to adult services in the State of Wisconsin, with the hope that the information will improve outcomes for students with disabilities. According to State Superintendent Dr. Tony Evers, “It is our mission to prepare Wisconsin’s students to become contributing members of their communities and the world by connecting youth to the resources necessary for a successful transition.” Funny, that’s the goal of most parents, too!

Unfortunately, it seems far too often we fail at this goal. Too many students are directed down paths proven to be isolating and disabling in nature. You see, people with disabilities have both abilities and disabilities. The training, encouragement, and support they receive are strong indicators of whether their abilities or disabilities will be the foremost forces shaping their lives. When we direct students down paths towards sheltered workshops, we are directing them to lives where their disabilities, not their abilities, shape their lives.

In renewing an old contact, I was advised, “DO NOT ACCEPT a sheltered workshop for your son. He will never make any money and will never leave. That’s very clear in the research and in practice statewide in WI.”

There are people trying very hard to change the way things are done in Wisconsin. Sheltered workshops and other disabling pathways are being diverted to make more pathways that provide students with disabilities with strong enabling forces in their lives, so their abilities, not their disabilities, can direct their lives.

Together, those of us who believe in the abilities of people with disabilities can change the way society chooses to provide for and support people with disabilities. Together, we can make sure abilities, not disabilities, are the dominating forces in their lives. No one person can make this change on their own, but together we can!

The Ripple Effect

  • Posted on December 6, 2013 at 10:00 AM

The Affordable Care Act. When the law was passed, my family was safe and secure in a state-run program that offered families a way to ease off of medical assistance by providing an opportunity to purchase subsidized insurance when they no longer qualified for fully-funded insurance. I’m not entirely sure how this program really worked, because this month is the first time I made enough to be eligible for the transition and the Affordable Care Act killed the program. Now, my choice is Obamacare or bust.

When President Obama first started pushing this legislation, I wasn’t exactly supportive. On the one hand, we really do have a problem in this country, so there was a part of me that really wanted it to work. On the other hand, this legislation doesn’t do anything to fix the problem, because, as the system stands, healthcare cannot be “affordable” for providers and insurers and the people. Somebody has to lose out on that deal. Seeing as the major supporters of the legislation included providers and insurers, I suspected that the people would be the losers, no matter what the President and his supporters claimed.

When initial estimates for Wisconsin residents were released, all the evidence pointed to the people being the big losers. Recently debated figures indicate a rate increase of 10-185% due to the legislation that makes health insurance “affordable.” Since I cannot afford health insurance independently, my only hope of providing my husband and me with adequate coverage is to hope and pray for adequate subsidies (my children are still covered through Wisconsin’s disability-related insurance program). The only way to access those subsidies is to go through the program run by the federal government.

This is all the more complicated by the very unsuccessful roll-out of the new website. When I discovered that I would be forced to use President Obama’s hallmark legislation to provide my husband and me with insurance, I was also taking a class about the crossroads of technology and public administration. Let’s just say that the disaster that is seems so much worse when you’re actually informed and leave it at that. Okay, I’ll throw this in too: After discovering how important online security really is, I really have no interest in loading up confidential financial information on a site that hasn’t passed its security tests because those tests were deemed too time-consuming under such a tight deadline.

The problem is that I don’t have any good choices. I can either go without insurance, which means my husband will go without prescription medication, or I can let the federal government take even greater control over my life. Either I pay a penalty for having no insurance or I pay more than I can afford for insurance that I cannot afford to use effectively. The only other option is to give up the freedom of self-employment in favor of a job that will provide insurance I can actually afford, if there are any employers who can still afford to provide insurance to their workers after this whole mess shakes out.

Wisconsin’s Teacher Protests: What the Protests are NOT About

  • Posted on February 26, 2011 at 3:07 AM

Earlier this week, I wrote about the protests in Wisconsin that hit the national news feeds so hard.  It was the kind of political post that I try to stay away from on this blog.  However, I felt it necessary to post about what the protest were about, before I posted about what the protests were NOT about.

In the United States, we spend more to educate consumers about what products to buy than we spend to educate our children.  This fact provides a disturbing illustration of US priorities when it comes to education.  We do not pay teachers enough to hire and retain the high quality teachers our children deserve.  We do not devote enough resources to providing our children with the high quality learning environments they deserve.  We do not devote enough resources to develop the best methodologies for teaching our children, nor do we train our teachers in the existing best practices as our children deserve.

Imagine if parents, teachers, school administrators, and community leaders protested our country low prioritization of education.  Imagine if it happened in just one state.  The way the protests in Madison have spread, we could raise awareness to new heights.  Instead, teachers protest over their union rights, their pay raises, and the amount they must contribute to their benefits packages.  If the protesters in Madison are to be believed, union rights are sacrosanct, but our children’s rights to a high quality education are not.  If teachers have to be let go, if classes have to be shut down, if services for students with disabilities need to be pared back or eliminated—well, that’s fine.  Just don’t touch their union rights. 

Our public schools are in trouble.  Unions do not help the situation.  It seems like nobody is really helping the situation.  Our priorities haven’t changed.  Our country still wants to provide students with an assembly-line style education for as little money as possible.  As much as special education rights represent a dramatic shift from that mentality, that shift has only gone so far.  Too many people argue that special education deprives “real” students of the resources they need.  Providing those “real” students with individualized education isn’t even on the negotiating table.

Why not?  Why aren’t our children our highest priority?  Why is it so easy for education budgets to be attacked?  Why do we, the voting public, tolerate the federal government’s inadequate support for federally mandated education, while our politicians vote for pork barrel spending to buy off their constituents?

I’m a fiscal conservative.  I believe the government should live within a balanced budget.  But I also believe that our spending priorities have to benefit the people—not just some special interest groups, but all the people—first and foremost.  Few things satisfy that priority like providing our children with a high quality education.  But that isn’t our priority because the voting public, the protesters, and the lobbyists do not make it a priority—so our elected politicians do not have to either.

There are a lot of things worthy of protest.  There are a lot of things that are worth my time and energy.  Protecting union rights are not.  Once upon a time, when workers were systematically abused by their employers and unions fought against those abuses, the unions were worth fighting for.  Now unions are a political force unto themselves, answerable first and foremost to themselves, and then to the workers they represent.  Like any other special interest group limiting information or disseminating misinformation is their stock and trade, a means of influencing their base, and they are good at it.

The irony is that if our present day workers—including the college-educated teachers who are currently teaching our kids—had a better education, then these tactics wouldn’t work nearly so well.  But, that’s not really ironic at all.  It’s the whole point.  Why would decision makers provide their constituents with a high quality education when doing so would require them to meet higher standards of political discourse and legislative action?  It’d be like shooting themselves in the foot.

Humane Dentistry

  • Posted on September 4, 2009 at 10:24 PM

Alex is our most complicated child.  The symptoms resulting from his autism are the most significant of our three children.  He’s nine years old and still hasn’t found an effective means of communicating consistently.  He rarely attempts verbal communication.  His sensory needs are difficult to meet, because he experiences a complicated mix of hyper- and hypo-sensitivity that seem to fluctuate without notice or apparent cause.  The many trained professionals over the years have made little progress in deciphering the mixed signals we get.  We don’t yet know how to help Alex interpret his environment consistently, which frustrates all of us.

Another ailment which is distinctly Alex’s (of my three boys) is something I don’t have a good name for.  Basically, when his adult teeth grow in his baby teeth have this nasty habit of not coming loose and falling out.  The adult tooth and the baby tooth compete for space where only one tooth should be.  It creates a double row of teeth in one spot that pushes both teeth out of ailment and affects the surrounding teeth.  He also has a very, very sensitive mouth.  When we first started brushing his teeth, he would occasionally gag to the point of throwing up.  Since then he’s learned to control his reactions.  When he cannot tolerate having his teeth brushed he just clamps down his teeth and lips so the toothbrush can’t get in.  If we catch him at just the right frame of mind and level of sensory management, we can occasionally get a tooth brush in his mouth and clean his teeth.  But, it’s not enough and he already shows signs of cavities.

Due to these complications, taking Alex to the dentist seems very inhumane.  To make the experience less traumatic, we go up to the dental clinic in the Children’s Hospital in Milwaukee.  They have a well-trained staff and special equipment housed in a seemingly ideal setting.  We take Alex into a private room with subdued lighting (except for the dentist’s lamp).  They have a hug blanket, which is a form of restraint intended to help keep him still and apply pressure that helps keep him calm.  But then we have to get the wedge in his mouth so the dentist can poke around in there.  The hug blanket isn’t enough, so on comes the happy gas (which isn’t available at the local dentist’s office).

Last time we took too long turning on the happy gas and Alex experienced such a severe reaction to the cleaning process that he threw up.  After that, a lot of happy gas was used.  Alex fell asleep or a state of near sleep, which allowed the dentist to x-ray his teeth (revealing the near cavities) and finish some of the cleaning.  Even in this state, Alex was uncooperative.  Furthermore, I was concerned that he’d had too much of the gas.  He lolled a great deal and lay down in the car on the way home.  It’s an hour and a half to two hour drive back to our house.  I was alone with Alex and as much as I would have liked to watch him, I had to keep my eyes on the road.  I felt anxious for his well-being all the way home, and would reach my arm behind me to touch him and feel the rise and fall of his shallow breaths.  He was out of it and upset for the rest of the day.

After seeing how traumatic the experience was for Alex, the dentist recommended putting him under general anesthesia in order to perform all his dental care needs at once.  This is a procedure the dental clinic is able to do, but getting MA approval is difficult.  Before we can get that approval we have another regular visit to see if just maybe it’ll go more smoothly this time.  It’s a week away and I’m not looking forward to it.  Luckily this time I will be picking my mother up at the airport on the way back, so I’ll have another set of eyes to watch Alex.

The question I ask myself is:  What would be the most humane way to get Alex the dental care he needs?  I don’t like restraints, I don’t like doping him up with “happy gas” (which, btw, doesn’t make him at all happy), and I don’t like the idea of putting him under.  Yet, without the restraints and the happy gas, dental care would be even more traumatic for Alex.  And putting him under may be the least traumatic alternative.  If teeth problems didn’t cause so much pain (as I know from my own mouth and through observing others), then I would probably say we should just forget the whole thing.  But cavities are painful.  Untreated cavities can lead to cysts, which are even more painful.  And, while I cannot be sure, I cannot imagine that having two teeth where there should only be one would be all that comfortable.  I especially cannot imagine that, since his aggressive behavior started right around the time the first baby tooth refused to come out.  It might be coincidence, but he might be in constant pain or maybe just discomfort.  That would certainly explain his irritability.  But so would the general frustration of being unable to consistently communicate in a manner that is understood by others.

The most difficult thing for me is the ignorance.  I don’t know the best thing to do for my child.  If I knew, but was unable to do it, I could at least plan and strategize how to achieve my goals.  But, not knowing leaves so few options.  At this point, I can only make the best choice possible – using both my head and my heart to see which way to go – and hope Alex can forgive me if I’m wrong.  As a parent, there is just so much of that.  We second-guess ourselves, because some of the choices we make are just wrong.  But we never have all the information; we never know all the consequences; and we cannot see inside our children’s minds or ask their future selves to know what they would choose if they were able.  We must do the best we can and remember to say “I’m sorry” when we’re wrong.

P.S. Left Brain/Right Brain also has a post about autism and dentistry that leads you to an article by Darlene Oakley.

Back to School Ruminations

  • Posted on September 3, 2009 at 8:00 AM

Comparing and contrasting Willy’s educational experience with that of his brothers always makes me a little sad.  Willy is fortunate in that he’s found a way to take the world as it is and interacts on a level that most people understand.  He’s very much autistic and still faces many challenges in how he interacts and what he’s considered able to do and what he is able to do (which are not always the same).  But, he has a strong support system at Roosevelt and is able to compensate for most of his differences to succeed in a socially recognizable way.  Alex and Ben are on a different track.  They do not demonstrate a sufficient amount of self-control, communication, or interaction to participate (as per the Janesville school system) in an integrated environment.  Their educational needs are met in a segregated classroom called the CD room – for cognitively disabled.  The fact that they are not, in fact, cognitively disabled plays little significance in this designation, because they are not able to communicate their intelligence in an academically recognized fashion.  Roosevelt is not equipped to meet their needs, so they are sent to attend school together at Kennedy.

I don’t mean to slam Roosevelt or Kennedy.  The decision here is made at a level neither school can change.  Both are goods schools with good people and both try to service their students as they are able.  But I cannot help but remember my own time in school.

In one of several grade schools I attended there was a student with Down ’s syndrome.  I only saw her on the playground and many of the students made fun of her.  She first came to my notice when I saw another child push her for no apparent reason other than her poor balance meant she’d fall with only a little push.  I didn’t usually see things like that, because a friend and I would go off as far in the field as we could to play our own games of make-believe.  This girl would always come out a few minutes later than us, so we’d already be gone.  After seeing our classmate push her down, we went to her an invited her to come play with us.  She couldn’t quite follow our game, but enjoyed our company. 

In junior high, I was somewhat segregated.  They called the classes I took “gifted and talented” or “differentiated.”  They were the opposite of CD classes, designed for students who excelled instead of those who struggled.  I enjoyed these classes, because I was challenged academically for the first time in a long while.  Yet, integrating with non-differentiated students in the regular classes was difficult.  I was set apart, and they knew it.  Most of my fellow differentiated students had the social skills to compensate, but I didn’t.  I was an outsider.  Not like any of them and being segregated for most of my classes seemed to make that worse.

In all my time going to school and in all the different schools I attended, I was only aware of the one girl with cognitive disabilities.  The rest were kept out of sight, but I know now there had to have been more.  Kennedy doesn’t try to keep Alex and Ben out of sight.  Each child is assigned to an age-appropriate classroom with their typically developing peers.  Each will visit this classroom as their schedules allow.  And, at my recommendation, last year on Fridays one of Alex’s peers would come to the CD classroom to visit him.  This became a special treat that his peers looked forward to and enjoyed.

So, progress is being made.  Yet, I know fully integrated schools exist and that they can work for the benefit of all the students.  I know that children with special needs should not be kept out of sight for the comfort of the bigots.  I remember sitting in school, surrounded by my predominantly white peers, and learning about the history of segregated schools.  I remember when I first learned what happened in Little Rock.  I remember raising my hand and asking, quite honestly, “But why would they be angry that the kids wanted to go to the good school?”  I didn’t understand.  In a way, I still don’t.  I can wrap my head around racism and bigotry.  I see it as wholly illogical, but I understand that it is driven by emotion not intellect.  I cannot wrap my heart around it.  I cannot understand those emotions that drive racism and bigotry, however well I can label them:  hatred, fear, disgust.  I understand that people crave a sense of commonality and that those outside that commonality face prejudice.  That it is so, and understanding that it is so, doesn’t help me to understand why.

I’m thankful for the progress that has been made and look ahead sadly to how much more must be done.  But, my boys are lucky.  They have a chance.  So many have their chances stolen from them by prejudice and hatred.  I cannot help but think my failure to understand leaves me powerless to affect needed changes.  But I will try.  Everyone deserves the chance to live, to be educated, to grow, to develop – without artificial roadblocks keeping them from their own potential.

Health Effects of Activity Limitations

  • Posted on August 17, 2009 at 12:00 PM

Dr. Whitney P. Witt recently published a paper, “The Impact of Childhood Activity Limitations on Parental Health, Mental Health, and Workdays Lost in the United States,” concerning her research determining whether children with activity limitations (i.e., children whose activities are limited in comparison to their age-appropriate peers) affects the physical and mental health of parents.  Not surprising, Dr. Witt found, “Parents of children with any activity limitation were significantly more likely to experience subsequent poor health and mental health.”  If the activity limitations were on-going and/or multiple children lived with activity limitations in the same family, then the odds of poor mental health were significantly increased.

The results are not surprising.  She concludes:  “These findings indicate that child health can importantly influence the health and work behavior of the family and that health care providers should consider a family-centered approach to care.”

I don’t disagree.  Family-centered health care is important.  But, and this is a BIG but, there is a time-tested method of assisting these families.  Witt touches on that as well:  “Employers should consider offering respite care or additional support services for families whose children have activity limitations. This could enable the parents to miss less work and may improve workplace productivity.”

Neither my husband nor I have ever worked for an employer that offered such a benefit, though our work history has suffered due to the special needs of our children.  However, Wisconsin has an excellent (read here: expensive!) autism program that provides respite care to our family.  It is a sanity-saver!  Respite care is vital when you’re raising children with special needs.  Unfortunately, it seems funds for these programs are too few, spread too thin, and too limited to benefit as many people as need it.  For example, though these services are widely available to Wisconsin families with children with autism, families with children experiencing other special needs and activity limitations do not share in these same benefits.

There is a cost to raising children with special needs.  The cost is real, whether it’s spent preventatively or on treatment.  Our families are worth the cost.  Our productivity is worth the cost.  Our health is worth the cost.

“There are substantial health, mental health, and work implications for parents caring for children with activity limitations.  Addressing the needs of these parents could help improve the health and well-being of the whole family,” Dr. Witt said.  And she’s right.  It would also make for better employees, better citizens, and a better nation.