April 2006 Issue

There are no scheduled parent support group meetings at this time.

Kamali Mictchell. 2006 Special Olympics Basketball

Kamali Mitchell's basketball team, the "Chargers" received bronze medals this year. The two games they played in the Region II finals were on Sunday Jan. 22, 2006 in Effingham, IL. Kamali is currently the youngest player. We would love to see more families participate in Special Olympics. The coaches, team members and other families were great. Kamali was one proud young man.

In this issue we continue the series on Down syndrome growth hormone abstracts and commentaries from the journal Growth, Genetics & Hormones.

Our guest commentary is by Michael T. Bailey, E-mail: mtbclarion@comcast.net, Portland, OR. Eli's Choice? © 2006 Michael Bailey.

A young man with Down syndrome "chooses" to drop out of his carefully crafted inclusion placement and opt for a self-contained classroom. The lack of social integration in high school suggests not only that his decision is correct but, indeed, inevitable. Why is that?


Is an inclusion placement impossible to implement in high school? What is inclusion anyway?

A Simple Choice

The Wall Street Journal, in a December 31, 2005 article by Amy Marcus, discusses an inclusion dilemma of a Maryland family. The article, Eli's Choice, focuses on the "choice" the 14-year-old Eli made to renounce his inclusion placement and opt, instead, for a self-contained high school placement. The article emphasizes that this is Eli's choice, made to the surprise of his family. Eli feels lonely and isolated being the only student in his class with Down syndrome. Like all teenagers, Eli would like friends. And the friends he has are people among other students with disabilities. The "choice" is presented as a simple one. Friends vs. Social Isolation. But, people created the customs of isolation and people have the ability to dissolve them.

The article implies tacit acceptance of the barrier of social isolation. What it should have called for are creative solutions, not surrender.

Eli's mother was shocked by his choice. Her reluctance was mollified when she visited the school science fair where Eli was displaying his project. Even in that environment he asked her about his high school placement and she realized the level of his anxiety. "I really had to step back from my personal beliefs," she said.

Social Integration Presented as an Impossible Barrier

Given the results of a cited study by the Center for Social Development and Education at the University of Massachusetts in Boston, Eli's choice is presented as inevitable. The study found that social integration of students with disabilities in high school has remained "stagnant." In spite of demonstrated success of students from inclusion placements living more independently as adults, having more friends and better jobs, the article implies that an inclusion placement is impossible, given the attitude of classmates toward kids with disabilities.

moonlight is the newsletter of the Riverbend Down Syndrome Association.

Editor: Victor Bishop
Web Site: http://www.riverbendds.org/

The cited study involves 5,600 seventh-grade and eighth-grade students from seventy schools across the country and concludes that while half the students said they were "willing" to interact with peers with disabilities during school hours, only one-third said they would consider social activities with them away from school. "Student attitudes continue to be the most formidable barrier to inclusion," the study concluded.

Because there is an unknown factor, in this case social acceptance, the article suggests that families are paralyzed by fear of the unknown and, if not endorsing, at least acquiescing, in more restrictive placements. The choice is portrayed as simple: a happy child is a segregated child. Segregation is reality; inclusion a mere dream.

Why the focus on negativity? The study concludes that one of three high school students are willing to socialize with disabled peers outside of school. With a little courage and creativity this is surely a fertile seed with which to grow social integration.

I find the results encouraging.

But it is not simple. And Eli's choice is not a reasonable choice.

When Choice is Not Choice

My first reaction was to ask myself, "Who in the school system can make a "choice" to attend school only with people exactly like them?" The answer is, no one. No one, that is, except kids in special education. Afro-American girls cannot choose a public school that is exclusively for Afro-American girls.

The fact that we cling to self-contained classrooms does not tell us one thing about the students in them. It only tells us that unknown factors, such as isolation, have paralyzed our collective ability to move beyond fear of the unknown and plan inclusive placements where social acceptance is a priority and not an afterthought. What is missing here is not appropriate candidates for inclusive education. What is missing is creativity.

Why is it that kids with disabilities are the only ones offered the opportunity to opt out of the real world? If a non-disabled child is struggling with algebra we don't send them a special school for math underachievers.

Inclusion is not easy. But it has been around for over thirty years and the time long ago came and went where schools and parents can honestly behave as if inclusion were a wheel that needed to be invented. Inclusion is a model that works. Its benefits are well known. So why are we still acting like it is something so new and different that we just can't figure out a way to make it work?

The celebrated case of Brown vs. the Board of Education rejected as unconstitutional, the idea of a "separate but equal" education for children of different races. The road to racially integrated education has not been easy. We have all put a lot of effort into learning how to do it. No matter how difficult it has been, no one has suggested the option of giving children the "choice" of opting out of racially integrated education. No one is calling for a return to segregation because of difficulties with inter-racial friendships. Why is special education different?

Uninformed Choice is Not Choice

I do not criticize other parents for educational decisions they make about their child. These are personal matters best left to the judgment of families. This is not a critique of the Lewis family, who appear to be highly skilled advocates, struggling to do what is best for their son. But they should never have been forced into this sham "choice."

The bedrock principle of self-determination is choice. Implementation of self-determination is really a question of the best method to redress the historical absence of any kind of choice, for both children and adults with disabilities. Disability "services" have been created on a one-size-fits-all model, totally indifferent to choice. The paternalism of traditional service models does not allow for the possibility that someone with a disability would have either choice or the ability to exercise it. Fear of the unknown, in this case what people with disabilities would do with freedom if they had it, stopped the process in its tracks. We opted for safety over risk, and eternal childhood over the scary adventure of becoming an adult.

In our enlightened modern world "choice" has become the holy mantra of self-determination. Any flim-flam notion, dressed up as "choice," is regarded as unchallengeable. In this mode of reactive thinking, we are compelled to honor "choice." The issue is simply tossed off onto an adolescent with a disability and, because it is his "choice," we are, somehow, expected to bow down before it.

This may or may not be a good policy for adults with disabilities. But Eli is not an adult. He is a child. Just how informed can a fourteen year old be?

What would your reaction be if your fourteen-year-old daughter with Down syndrome came home and announced that she had made a "choice" to have a baby? Or, "chosen" to become a user of marijuana? Since these things are "choice," are parents bound to accept them? Of course not.

Our whole culture is based on the belief that no fourteen year old can simply "choose" to reproduce or ruin their health with drug abuse. We recognize that childhood "choice" is an immature choice or, put another way, not an informed choice. And we override those choices everyday. We intervene, we prohibit, we monitor. What we don't do is tacitly accept destructive, bad or illegal behavior because it is a "choice." That is what parents do. Parents make choices for their children until the children become adults.

Is Inclusion a Dream?

"Inclusion," said the late Marsha Forest, "is a battle cry, a parent's cry, a child's cry to be welcomed, embraced, cherished, prized, loved as a gift, as a wonder, a treasure." Is there anything more that a parent could want for their child, disabled or non-disabled, then to be welcomed into the world, embraced by family, friends and community, cherished, prized and loved?

Inclusion, as described by Marsha, seems the panacea of normalcy that so many of us wish for our child with a disability. Inclusion ratifies our belief that our children are normal kids with important contributions to make to our world.

In the marathon game, that raising a child with a disability has become, there is, perhaps, nothing that parent advocates strive for more than community endorsement of their child's place in the world. The first skill a parent needs is the ability to believe in their child and his or her capacity. Inclusion is a word we use to describe what is, in fact, a dream of normalcy. Normalcy may be unrealistic, and we know that, but we like to minimize differences and emphasize human similarity. The first gift of inclusion is the gift of dreaming of a world where our children belong and matter.

Dreaming is an essential part of advocacy. But inclusion must be more than a dream. A dream is imprecise. Inclusion is the opposite of exclusion. And exclusion is not what we want for our child, any child, or ourselves.

Inclusion as Philosophy

If we want a world of inclusion, independence and opportunity for our child with a disability we must develop our own philosophy of inclusion and learn to use it .An inclusive world is a familiar place to us. Most of us have not had the experience of labeling and exclusion and, when we think of those things in relation to our child, it gives up the creeps. And it should.

The great mathematician and philosopher, Bertrand Russell, said that the principle goal of teaching philosophy is "to teach how to live without certainty and yet without being paralyzed by hesitation." Much about how we will include our child in a normal world is unknown and cannot be known. Inclusion is both philosophy and art. And, like those things, it requires creativity both to achieve and to maintain.

An essential part of the creative process is hesitation - without it, divergent thinking is impossible (and inclusion is divergent thinking) - but we need to find a way to move through the hesitation and beyond it or we risk being paralyzed by the very uncertainty that makes creativity possible.

Like any philosophy, inclusion contains inherent contradictions and it is in the mastery of the contradictions that we avoid the paralysis that Russell warns of. We would prefer a world of certainty. We would like assurance that if we do A, B and C the result for our child will always be D. But neither life, nor philosophy, comes with a guarantee. It is uncertainty that gives us the gift of creativity. And without creativity, we are lost.

A Natural and Normal Part of Life

Disability has been around since the first human walked the earth. Having Down syndrome is normal. It is time we all accept that. But it seems to be one of the last things the culture will accept. People with disabilities may appear different. They may act different. Instead of accepting those facts as just another square in the quilt of life, we have focused on differences.

Why, more than a half-century after Brown, do we still maintain separate educational facilities for kids with disabilities?

Eli's choice is really Eli's dilemma. Given that we offer separate schools and classes, he must choose inclusion or separateness. That is a false choice. It should not be there for him to make.

But, we know that the choice is there and it is real. There are positive steps for social inclusion that could be tried in Eli's inclusive high school. The National Down Syndrome Society maintains an excellent web site with suggestions about how to implement social inclusion with IEP goals. This is the kind of thing that we all need to know. But we also need to remember that we are living in an artificial world. Such things as social inclusion goals would not be necessary in a world that accepts difference and diversity. We cannot create that world by dreaming. We have to make it happen.

The philosophy of inclusion is just what Russell said it would be. It presents us with a world of uncertainty. Our job is to learn to live with unanswered questions and to travel untrodden paths.

The writer, and advice-giver, Cynthia Heimel, wrote, "When in doubt make a fool of yourself. There is a microscopically thin line between being brilliantly creative and acting like the most gigantic idiot on earth. So, what the hell, leap."

Don't be stopped in the pursuit of what you think is best. Believe in your child. Believe in your family, its history and its values.

Being a parent is not easy. We must balance our natural concern for our children's immediate happiness with our own responsibility to be good stewards of their childhood. There is no substitute for your judgment.

Eli made his choice. We wish he and his family well and hope for the best.

At the same time, we do not dishonor Eli or his family, by recognizing that this "choice" should not have been presented in the first place.

We are all part of the human family, in all of its complexity, confusion and good intentions. Let's start by believing that.

Let's believe in our children.

Separate but equal is a false choice. Let us work to create a world where acceptance is the norm and not the exception.

Disability will be a natural, normal and accepted part of the human condition when we all accept it without second glances or judgments. Only then will we get to make real choices and set aside for good those administrative conveniences and fears that still plague our children. It's time to move on.

Michael Bailey is the father of two teenage daughters. His 17-year-old, Eleanor, has Down syndrome.
He is a member of the Board of Directors of the National Disability Rights Network.
Mr. Bailey is author of "Special Education: A Families Guide to a Child's Success," which will be published in April, 2006.

StarNET Region IV

March 31. 9:00 a.m. - 3:00 p.m. Do Re Mi to ABC: The Connection Between Music and Literacy. Many basic pre-reading skills happen naturally when children participate in music. Pattern, rhyme, rhythm, sequencing, crossing the midline, language development, vocabulary, tracking, motor coordination ... and more! Music can be an equalizer: many children with developmental and physical delays can engage effortlessly in musical activities. Presenter: Carole Peterson, see: http://www.macaronisoup.com. Location: Early Childhood Center, Southern Illinois University, Carbondale, IL (618) 453-4272. Contact: Cheryl Neville (618) 397-8930, ext. 166, E-mail: cnevill@stclair.k12.il.us.

Future Planning

Ticket to Work? Say What? Say What? Future Planning in Plain English, Vol. 2, No. 3, March 15, 2005 by Alexandra Conroy, Future Planning for Families with Special Needs. Waddell & Reed, Inc., One Oak Hill Center, Westmont, IL 60559. (630) 789-0044. Fax: (630) 789-8005.
This publication is for information only. Before making any financial decisions, please consult your benefits specialist, financial advisor or attorney.

What is the Ticket and how does it work?

Ticket to Work is an underutilized but potentially useful Social Security Administration program designed to assist people with disabilities who want to work. It allows Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid and Medicare recipients to prepare for and begin to work without losing those benefits. One reason this is possible is because you can deduct certain expenses before calculating your 'countable income.' Remember that your eligibility for ongoing disability income benefits depends in part on whether your countable income exceeds the 2005 Sustained Gainful Activity (SGA) threshold of $830/month or $1,380/month if you are blind. Last issue, we discussed Impairment-Related Work Expenses (IWRE) which can be deductive to lower your countable income. In this issue, we will discuss subsidies and special conditions and unincurred business expenses.

What are 'subsidies' and 'special conditions'?

'Subsidy' and 'special conditions' are terms the Social Security Administration uses to identify support that you receive while working because you have a disability that a worker without a disability would not need or receive. Such supports may be provided by your employer, in which case they are termed 'subsidy' or by an outside organization, such as a vocational rehabilitation agency, in which case, they are termed 'special conditions.'

Subsidies and special conditions represent additional costs to either the employer or another provider agency. The actual value of the work you perform is really the amount you are paid to do the work less these additional costs. The Ticket-to-Work is designed to provide a cushion until the actual value of your work exceeds SGA consistently. Thus, the SSA allows you to deduct the cost of subsidies and special conditions from your nominal income to arrive at an effective income which is then compared to the benchmark to determine whether or not you are working at SGA level.

Subsidy and special conditions are used to determine whether or not you qualify to receive either SSI or SSDI. However, the SSA will not deduct these amounts from your countable income when calculating how much SSI benefit you are eligible to receive. You may be able to deduct for subsidy and/or special conditions if:

Generally, it is up to your employer to determine the value of your work net of subsidies and/or special conditions. If the employer does not, the SSA will calculate.

What are un-incurred business expenses?

Unincurred business expenses are contributions that others make to your business or business expenses that others cover on your behalf when you are self-employed. Generally speaking, the SSA uses Internal Revenue Service (IRS) method to calculate your earnings from self-employment. However, the IRS will only allow you to deduct as the cost of doing business expenses that you, yourself, actually paid. For instance, if you buy a computer for your business or you hire a web-designer to produce your businesses web page, you can deduct those costs for income tax purposes. If, however, the local vocational rehabilitation program purchases a computer for you, or a friend designs your web-page pro-bono, the IRS does not consider these to be expenses.

For SSA purposes, you may deduct the cost of the computer provided by the vocational rehabilitation office or the cost of the web-page design even though you did not actually pay for these. Your income net of these un-incurred expenses as well as standard IRS expenses is then measured against the benchmark to determine whether you are performing SGA. Once again, un-incurred business expenses do not impact the amount of your SSI check.

For an expense to qualify as 'un-incurred' and deductible, you must be self-employed and the expense must be:

*Eligibility requirements taken from the Social Security Administration Programs Operation Manual System website (http://policy.ssa.gov/poms.nsf/aboutpoms) and the Centers for Medicare and Medicaid Services website (http://www.cms.hhs.gov/home/medicaid.asp). Information on IWRE taken from the Social Security Administration 2003 'Red Book' (SSA Pub. No. 64-030)

Down Syndrome Articles

Positive Steps for Social Inclusion. Copyright © 2006 NDSS. Reprinted with the permission of Suzanne Elliott Armstrong, E-Mail: selliott@ndss.org.

For students with and without disabilities, the social experience at school is as important as the academic experience. Both are necessary to ensure post-school success. Colleges and employers want to see strong interpersonal skills in addition to the other qualifications they may be seeking. Below, you will find a list of action steps to help parents facilitate social inclusion for their children with disabilities. This list contains many suggestions that may seem obvious to you, but you would be surprised how often they are overlooked.

Social inclusion is a critical issue for all students with disabilities whether the student is educated entirely in special education classes or is fully or partially included in regular education classes. Hopefully, all of these students will eventually live and work in the community where they need to be able to interact with people of all ability levels. The following action steps will help these students develop friendships with their non-disabled peers in the classroom, if applicable, or in other school or extracurricular activities.

One of the critical components of social inclusion is that the other students see your child, and your child sees him or herself, as a full participant in the classroom and the school. Every activity or assignment your child participates in will underscore this point, even if it is modified or adapted. Before long, your child and his or her classmates will see each other in terms of similarities rather than differences and measure success based on how far each of them has progressed rather than on a comparison with each other's achievements. This creates a positive learning environment for everyone.

  1. If you believe it is appropriate for your child to be educated to any extent in regular education classes, it is important to start inclusion as early as possible.
  2. If your child may benefit from being held back a year, start him/her in kindergarten a year late. You don't want to hold your child back later, after friendships have been formed with classmates.
  3. The teacher (and paraeducator if applicable) should receive training or at least be aware of the importance of facilitating friendships. The best way to do this is to put a social goal on the IEP and specifically request staff training.
  4. In the younger grades, talk to your child's class (and all the classes that will be at lunch or recess with your child) if there are obvious modifications/ adaptations required for your child's assignments, if your child requires any special equipment or if your child has significant communication issues. Explain Down syndrome and its effect on your child in very simple terms. Explain the need for adaptations and/or equipment as being the same as a person needing glasses or, braces. Then spend time talking about all the ways your child is just like them: loves pizza, movies, sports etc. You only need to do this for a couple of years. After that, the other students who have been in the same class with your child will start sharing this information with new students. Everyone Counts: Teaching Acceptance & Inclusion, the new NDSS disability awareness curriculum for grades K-6, is an excellent resource for lesson plans, activities and discussions. For more information, contact NDSS at (800) 221-4602 or info@ndss.org.
  5. Consider sending a letter to parents of your child's classmates that provides the information you shared with the students. Communicate your willingness to answer any questions they may have about this information and about inclusion. This may also help when it comes to arranging activities with classmates outside of school.
  6. Ensure that a few of your child friends or supportive acquaintances are in his/her class every year. This is especially important during transition years to middle school and high school. The students who know and are supportive of your child will model positive relationships and promote the expectation that your child will continue to be an important part of the group. The fact that your child's friends may be in "gifted" or higher level classes in middle and high school should not be an obstacle. Many of these classes have a greater focus on group discussions than the regular classes and may be the best classes in which to promote your child's communication goals. Modified materials for these classes can be found as easily as for the regular classes.
  7. Ensure that your child is a full participant in all class and school activities.
  8. Out of school activities
  9. If friendships are still not developing you can explore school activities that facilitate friendships such as a peer-mentoring program. One example of this type of program is "Circle of Friends." For a fact sheet on "Circle of Friends" see http://www.unr.edu/educ/ndsip/tipsheets/circlesoffriends.pdf. Another excellent resource is the "Promoting Social Success" curriculum available from Brookes Publishing (http://www.brookespublishing.com/store/books/siperstein-6741/index.htm).

School is Where My Friends Are by Eleanor Bailey. Mouth Magazine #59, May-June 2000.

I am in Mrs. Karr's fourth grade class at Laurelhurst School in Portland, Oregon. I love it! I have always liked my schools. I have always had an aide to help me. Right now my aide is Lana Craig. She is cool! Lana helps me with work at school. She always tells me to "hustle." She wants me to be faster. Lana has a dog named Kola.

I had to read a book and tell the story to my class. In this assignment I have to pretend I am a character in the story. I chose Cinderella. My Mom and I went to a thrift store and bought a gown. I wore an old, dirty sheet over the gown and when it came time to go to the ball I tore off the sheet and everyone could see my gown. I did a good job.

This Spring we studied rockets. I got a plastic bottle. I put water, vinegar and baking soda in the bottle and then hurried to put the cork in. After a little while the pressure from the bottle blew the cork off and it was a rocket.

Some things in school are easy and some are hard for me. Math is hard but I don't do the same math as my friends. I go to a room once a day and do math and reading with my other teacher. Sometimes Lindsay is there too. She is in third grade and has Down syndrome like me.

I just turned twelve. I had a party at a swimming pool and forty kids came. We swam and then had cup cakes and juice and I got tons of presents. Mrs. Karr came too. I met my friend Amy at camp. She lives in Salem. She came to my party. She has Down syndrome too. So there were three of us with Down syndrome and everyone else doesn't have Down syndrome.

My friends said it was the best party they have ever been to. I got two Barbie dolls but I have to take them to my grandparents because my parents don't let me have them at our house.

Right now I am starting to play softball on a team. I will get a uniform. I already got a new softball glove. Next year I will be in fifth grade at the same school. Next year I will have a new aide because Lana wants to have a baby. I will miss her.

School has always been fun for me. Most of my friends are there and I love my teacher.

A 'Placement' in a regular class by Michael Bailey. Mouth Magazine #59, May-June 2000.

Eleanor's story is true. (see "School is Where My Friends Are.") Her IEP Team for the past seven years has always 'placed' her in the Least Restrictive Environment; that is, she has gone to her neighborhood school, in a classroom with appropriate related services including a one-on-one educational assistant. With these supports in place she has made progress every year on the educational goals set out in her Individual Education Plan. Thus she is entitled to remain with her friends.

Her current 'placement' has been a great success. Marilyn Karr, her teacher, welcomed her into her class from the beginning and has always made Eleanor feel not only a part of the class but a valued member as well.

Eleanor's educational assistant, Lana Craig, has been with Eleanor for two years and is an unusually competent and dedicated person. Eleanor regards Lana, and Lana's dog Kola, as her special friends and has done a lot of things with them outside the classroom.

Many of Eleanor's classmates have been with her from the first grade and do not regard having her as a classmate as anything unusual or extraordinary. They are understanding of who she is, what she can do well and what she needs help with. They are quick to support and praise her.

Why then do her mother and I feel such anxiety about next year and her school future in general? Partly it is because we are aware that her 'placement' is regrettably not so much about her as it is about us. Don't get me wrong. Eleanor is a great and in many ways exceptional young woman. We know a large number of other children with Down syndrome who are in very restrictive placements and without the supports Eleanor has. There doesn't seem to be much real difference between their and her basic abilities.

Why is she with 'normal' kids and they are not?

The answer is that her parents are skilled, trained advocates who know the system, the buzzwords, and how to get what we want. It is not a matter of our loving her more than other families love their children. What hangs over our heads is the injustice done to others and the pressure to perform as super parents in order to each year achieve a 'placement' that leaves her with her friends in her school, pursuing her individual goals.

At the opposite end of the hall from Eleanor's room is the school's self-contained classroom. The kids in that class are separated from the rest and stand out as school oddities.

It is not that they are laughed at or abused, but where Eleanor is just another kid, her friends in the self-contained classroom stand out as special. They take recess at a different time. They eat lunch separately. They are escorted around the school. They are 'them'; the rest of the school is 'us'.

Eleanor is 'placed' in her 'least restrictive environment', a highly defined (see Federal Register, Vol. 64, No. 48, Section 300.550 -556) provision of IDEA '97. In order for a 'least restrictive environment' to exist there always is, by definition, a 'more restrictive environment' where a kid can end up. My experience is that when kids start out in a self-contained class (keep in mind they are five years old when that decision is made), they will not escape back into the 'real' school.

For those of us who start with an inclusion placement, there is an expectation that it can only go on for so long and than we will, of course, revert to another, more restrictive, placement more 'appropriate' for the student.

When kids 'fail' in an inclusion placement, it is never their fault. It is always the fault of the school. Either the school has failed to provide the necessary supports, lacks the professional skill necessary, or has an attitude that makes failure a preordained outcome. Naturally the failure is then used as evidence that inclusion cannot work.

When I first studied IDEA, the Least Restrictive Environment provisions seemed to me to be positive ones. What I did not know is that they are simply a first, federally-mandated step requiring schools to abandon their time-honored method of dealing with kids with disabilities by ignoring and excluding them entirely or, more recently, allowing them in but carefully segregating them from kids who would otherwise be in their class. A step in the right direction, not the end of the struggle.

What we need now is to eliminate the concept of least restrictive environment in favor of the simple notion that kids belong with other kids. All children must have the right to be educated with their peers. With supports, every child can succeed. Every child must be an 'inclusion' child.

My other daughter, Taylor, is nine years old. She is not 'placed' every fall. She simply goes where her class goes. That must become true for every child. Eleanor's education with her friends and neighbors must be a right and not a subjective game played between her parents and the school district.

It is time to abandon 'placement' and 'least restrictive environment'. Everyone matters. Everyone is important. Everyone is unique. Kids belong with kids. It is that simple.

Early Intervention Helps Child with Down Syndrome by Rebekah Hoffmann, E-mail: hoffmann@bnd.com. Highland News Leader, Feb. 20, 2006, A1 - A3.

Like most parents Duff and Tammy Wrobbel of rural Highland want what's best for their children, Parker, 7, and Holly, 6.

And they believe they have found this in the Highland School District, despite the fact that their children's needs vary widely. Parker, a regular education student, is a second-grader at Alhambra Primary School, while Holly, classified as special needs as a result of Down syndrome, is a kindergartner at Highland Primary School, where she splits her time between a resource room and a regular classroom.

Duff and Holly Wrobbel
  Duff and Holly Wrobbel

Duff Wrobbel, a communications professor at Southern Illinois University at Edwardsville, and Tammy Wrobbel, a financial aid officer at St. Louis College of Health Careers, are no strangers to the educational arena. They know that every school district does not give special education students the same priority as regular education students at budget crunch time.

"I've been absolutely almost humbled by how steadfastly (Highland School District) has stuck by special education," Duff Wrobbel said, referring to budget-cutting actions.

He noted that many other districts are inclined to short shrift special education under similar circumstances, although "it's not the moral thing to do - and it's only legal by the thinnest of margins."

He said he understands financial pressures but thinks public schools are meant to serve all students.

"Public education doesn't mean public education just for the kids who can be educated cheap and easy," he said.

The education that special needs students get often determines to what extent they can lead a normal adult life, the couple noted.

"This isn't just about indulging parents by going through the motions," Tammy Wrobbel said. "This is real. This is our daughter's future."

The family, which moved into the school district earlier this school year, previously lived in a district which they declined to identify. The couple said this district seemed to give special education students low priority.

"Holly started school at the age of 3. By 5, she had been in four different buildings, five different classrooms - every one of them very far from our home," Duff Wrobbel said, noting a one-way bus ride of up to 55 minutes.

He added, "Most kids with special needs thrive on consistency and routine. (The changes) were done strictly as a way of dealing with budget issues, and those decisions made my kid's life miserable."

The Wrobbels have been grateful to have found different circumstances in the Highland School District.

"It makes me proud, as silly as that sounds. It tells you something about the character of the place. Everybody takes a little bit of a hit so special education doesn't have to bear the brunt of it as it often does in other districts - and it's worth it," he said.

Duff Wrobbel pointed out that taxpayer money spent on early intervention and special education pays off in the long run. He cited statistics that show that for every dollar spent, there's a later savings of $4 to $7.

He also noted that many special needs adults, including those with Down syndrome, can become productive citizens and diligent workers at jobs where employers may otherwise have difficulty finding and retaining employees.

Growth Hormone Deficiency in Down's Syndrome Children. Growth, Genetics & Hormones. Abstracts from the Literature. Volume 9, Issue 2, June 1993. URL: http://www.gghjournal.com. Permission granted by Jere Lifshitz, RN, MS, Director of Operations on behalf of Prime Health Consultants and the author, Fima Lifshitz, MD.

In this study, the capacity to secrete growth hormone (GH) was investigated in 20 children with Down syndrome (DS) to determine if GH deficiency plays a role in growth retardation in DS. The subjects (13 boys, 7 girls) were aged between 15 months and 13.9 years, had a height standard deviation score (SDS) ranging from -1.19 to -5.48, a weight SDS of -0.21 to -4.58, and a head circumference SDS from -0.4 to -6.6 below the mean for normal children of the same age and sex. All but 1 severely mentally retarded child attended infant stimulation programs. All but 2 subjects had moderate to severe expressive language impairment and were institutionalized from early infancy. GH was evaluated in all 20 patients by levodopa (125 mg up to 15 kg, and 240 mg between 15 to 30 kg) and clonidine (0.15 mg m2) stimulation tests. GH secretory patterns were assessed in 4 patients via integrated 24-hour GH concentration (IC-GH) using a constant withdrawal pump with continuous blood collection every 30 minutes. Normal IC-GH values were considered to be above 3.2 ng/mL Peak serum GH after levodopa and clonidine stimulation was found to be below 10 ng/mL for both tests in 7 of the 20 children studied. Twelve children showed a disparity between levodopa and clonidine testing. Peak serum GH after levodopa administration was found to be below 10 ng/mL in 5 children; and peak serum GH following administration of clonidine was found to be below 10 ng/mL in 7 children. Four children had reportedly abnormal 12-or 24-hour IC-GH, with mean values below 1.5 ng/mL. These 4 subjects had previously shown GH levels above 10 ng/mL in at least 1 of the stimulation tests. Additional endocrine testing revealed no thyroid or prolactin abnormalities in any of these patients; serum luteinizing hormone, follicle-stimulating hormone, and testosterone levels were appropriate for age; and insulin-like growth factor 1 (IGF-1) levels were normal in all DS patients.

The authors conclude that the growth retardation observed in these DS children was associated with a reduced serum GH response to levodopa and clonidine stimulation tests, disparity in responses to the stimulatory tests, and low 24-hour IC-GH.

Castells S, Torrado C, Bastian W, et al. J Intell Disabil Res 1992;36:29-43.

Editor's comment: This study invites us to think that reduced GH secretion plays a role in growth retardation in DS. The authors speculate that DS children have fewer neurons and neuronal connections in the CNS, which accounts for the abnormalities in GH secretion found. However, as the authors pointed out, the discriminator of 10 ng/mL for peak serum GH responses to provocative stimuli is rather arbitrary. Decreased levels after stimulation tests (false-negatives) and disparity among test responses are well known to occur even in normal short children. In these studies, the peak response was between 7 and 10 ng/mL for levodopa in 2 patients, for clonidine in 3 patients, and for both levodopa and clonidine in another patient. The authors did not have their own control values for GH levels. In many laboratories using the same GH kit (Quintitape; Kaliestad Inc., Austin, Texas) used in this study, values between 7 to 10 ng/mL could be considered adequate and would rule out GH deficiency. Moreover, some IC-GH measurements were made with the Hybritech Tandem kit, which records lower GH levels than many other assays. Finally, all of these DS patients had normal IGF-1 levels for age. Therefore, the patients did not meet biochemical criteria for classic GH deficiency to account for growth failure. Unfortunately, only 4 of the patients who had appropriate responses to at least 1 pharmacologic stimuli had IC-GH measured, all 4 being abnormal. There were no such measurements made in the other 16 patients described in this report. Thus, no conclusion should be derived from these very few cases that the etiology of growth failure in DS patients results from inadequate spontaneous GH secretion.

A major pitfall of the study is the fact that obesity was not considered in the equation. Most of the DS patients were obese, as evidenced by the weight and height data; the majority of them were overweight for height. Since obesity is known to cause hyporesponsiveness of GH secretion to provocative stimuli and to reduce IC-GH, it is very possible that these obese DS patients could have responded normally after priming with pyridostigmine, as has been demonstrated in obese normal children.¹ Elsewhere these authors reported data that showed benefits of GH therapy in DS patients² (This information was reviewed previously in GGH.³) Caution must be exercised in obtaining incomplete data and extrapolating results of GH testing to establish the diagnosis of GH alterations in DS to justify treatment with GH. Other genetic mechanisms that relate directly or indirectly to gene abnormalities of chromosome 21 may be most important in determining height in DS patients.

Fima Lifshitz, MD
  1. Cordid F, Dieguez C, Casanueva FF. Effect of central cholinergic neurotransmission enhancement by pyridostigmine on the growth hormone secretion elicited by clonidine, arginine, or hypoglycemia in normal and obese subjects. JCEM 1990;7(5): 1361-1370.
  2. Torrado C, Bastian W, Wisniewski, et al. Treatment of children with Down syndrome and growth retardation with recombinant human growth hormone. J Pediatr 1991; 119:478-483.
  3. Lifshitz F. Growth, Genetics, and Hormones 1991;8(1):15.

Web Wanderings

Eli's Choice by Amy Dockser Marcus. The Wall Street Journal, December 31, 2005. Copyright © 2005, Dow Jones & Company, Inc. URL: http://online.wsj.com/article/SB113598974559935259.html
His parents fought for boy with Down syndrome to be in the mainstream. As a teenager, he just wanted to be with his friends.

Bethesda, Md. - FOR YEARS, Eli Lewis was the only student in his class with Down syndrome. [...]

But when all the other kids in his class were making plans to go to the local high school this fall, Eli, 14 years old, said he didn't want to go. He wanted to be in a small class with other students like him. "I don't want to get lost in a big crowd," Eli says.

Eli's declaration surprised his parents. Then his mother recalled the many times she stopped by the school to check on her son, only to find him eating by himself. Once, when she came to pick him up from a dinner that chorus members attended, she says she found Eli sitting with his aide, while the other students sat at a different table.

"The kids liked him, they knew him, they spoke to him," says his mother, Mary Ann Dawedeit. "They just didn't think of him as a peer." Eli, she says, was tired of "being the only kid who was different." [...]

Ms. Dawedeit remained reluctant. She talked with a friend who had a son with Down syndrome, who was also learning in a regular classroom. "I felt like I had let her down," Ms. Dawedeit says. "I had preached a mantra for so long to so many." [...]

Father's Journal


Check it out, dawg: Britten's variations on a theme from Abdelazer by Purcell. Emmanuel presses repeat to hear the fugue again and time stops as I drive. Not a worry in the world waiting for the final chord.

His girlfriend, whom he met in elementary school and also has Down syndrome, had invited him to be her date to the upcoming Winter Ball at her private school. Next month, Eli will turn 15 and is planning a big party. The only kids he plans to invite also have disabilities, his mother says. [...]

When he got there [to his next class], his face brightened when he saw one of his friends. "This is my best friend," he said, throwing his arm around the other boy, who also has Down syndrome. He pressed his face close to his friend's until their cheeks almost touched. Eli smiled. "What table are you sitting at lunch today?" he said as they walked together down the hall. "Come on, make sure you sit with me."