Our Special Children

Mickey receives his award.

He celebrates with his family.

Within the past two weeks our family has celebrated and mourned two of our special children. Forty-six year old Mickey with Down Syndrome celebrated his successful adjustment to independent living after the death of his parents.  Our thirty-nine year old Sharon with Prader-Willi Syndrome died unexpectedly.  They were part of our large extended family, welcomed at family events, but not really understood beyond their immediate families. They were indeed special, unique, and forever children mentally and emotionally.  They were deeply loved by parents who dedicated their entire lives to their care, worrying about what would happen when they died and siblings became responsible for their special brother or sister. One child outlived his parents as one would expect; the second left an inconsolable mother.  Both lived at home for most of their lives; one included in all extended family interactions while the other was primarily sheltered within her immediate family.

These are not unusual arrangements, and far better than the lives of older mentally impaired individuals. Another cousin—born a year after I was—a PKU child, was kept close to home, seldom taken anywhere. When his parents tried to get him special schooling at a Kennedy family sponsored facility for mentally impaired children they were turned away—no clout, little money. Jimmy stayed at home, often perseverating, always fearful, until his widowed mother could no longer take care of him. In his 50s he found himself in an alien setting, a very nice caring Home—“he seems happy there”—but everything was unfamiliar. Pity he didn’t find his way there earlier because I suspect he never experienced happiness. That is not to say that his parents didn’t love him and care for him—they did their best but Jimmy was a child of the 1940s and we were far less enlightened.

Special children are not labeled “mentally impaired” in the 21^st century. That is a PC no-no. They are intellectually disabled and/or developmentally delayed. They are not hidden away, unschooled and untrained as Jimmy was. This is a very good thing, because each special child has potential, just like the rest of us. 

As a child of the 60s, Mickey attended a special school for children like himself, learning the skills necessary to obtain work in a sheltered workshop. However, like so many Down children, his parents were getting old, their health failing. The world was beginning to close in on Mickey. After his parents died, Mickey’s siblings took the responsibility their parents’ prayed they would accept. Today their brother lives in a supervised independent group home. He has friends who have their own unique challenges. He has a job. His weight is down and he is less reticent to interact with the world and other people. Mickey’s success was celebrated by Aspire of Illinois, an organization dedicated to facilitating the lives and actualizing the potential of adults with developmental disabilities. I think he is truly happy with his new life.

Sharon’s education was determined by an IEP (individual educational plan). She was a special child treated under Public Law 94-142.  She received early evaluation and education in “the least restrictive environment” to the maximum extent possible. The local school district was charged to provide services and interventions appropriate to her needs. She was “mainstreamed” into the general school population but would remain alone within her difference.

A few times her widowed mother sent her to a hospital for morbidly obese children. Prader-Willi Syndrome has an eating disorder component that makes supervised diet a necessity. Children with Prader-Willi can function at a fairly high level within the mental retardation IQ range. Sharon did as well as she was able. After the legal age limit of 21, she and her mother were left to their own resources.  Sharon stayed close to home, intensively cared for by her mother with help from brothers and a sister. Sharon enjoyed pets and was known fondly by the neighbors. But she did not really have a life outside a small, carefully proscribed, circle. She developed serious health problems. Extended family members rarely saw daughter or mother as the years passed.  I was shocked—and a bit guilty—reading her death notice in the local paper. Only a few cousins attended her funeral, unable to console a mother disorientated by grief, lamenting that she had “spent my entire life taking care of her.” Such is the toll that befalls the family of our special children.

As you might suspect this disquisition on special children is about to veer into something quite different.  I was not only a member of the extended families of these three children; I have worked in the system set in place by PL 94-142 (Enacted in 1975 as the Individual with Disabilities Act, IDEA).  I was a mainstreaming aide for a number of years in our local junior high school. All of my students were special with IQs ranging from the low-60s to the mid-30s. I worked with them in both a self-contained classroom and in regular, specially selected regular classes. Each child had a team of educators determining their educational goals. Each child had close families, caring—and often despairing—parents. 

The law requires that all children be educated in “the least restrictive environment.” From this concept came the practices of mainstreaming and inclusion, although the presumption was that self-contained classrooms would be the better general option in some cases. Children are mainstreamed by pulling them out of self-contained classrooms and placing them in regular classes with the general school population. Inclusion virtually eliminates the self-contained classroom. It was expected that a certified teacher with training in special education would work in the regular classroom with the special education child. In reality, things work differently. 

Special education assessment takes place when the child is very young so that services can begin in the home.  An individual educational plan (IEP) is created by a team of special education professionals with parental approval. When the child is old enough for school, s/he is grouped by disability:  intellectual disability, developmental delay, learning disability, behavioral disorders, etc.

 Often those with learning disabilities and behavioral disorders are very bright, but the topic I have chosen to discuss is not with these children but rather with intellectually disabled students including many of those identified as developmentally disabled, a “condition in which a child is behind schedule in reaching milestones of early childhood. This term is often used as a euphemism for mental retardation, which can be less a delay than a permanent limitation of a child’s ability to progress.” [mednet.com] 

In school year 1980-81, 20% of the total disability population being served was classified with an intellectual disability; in 2010-2011, that percent was 7.1. The term developmental delay was introduced in 2000.  I imagine the percentage difference has been siphoned off to the developmental delay and multiple disabilities categories since then—in 2010-2011, 5.7 and 2.0 percent respectively. [Indicator 9: Children and Youth with Disabilities, “The Condition of Education 2012”, National Center for Education Statistics – Institute of Education Science] 

For children with intellectual disability or developmental delay time spent in regular classrooms in the 2009-10 school year is surprising considering that self-contained classrooms were originally favored in IDEA.

                                    80% or more                40-79%              Less than 40%

Intellectual disability        17.4                  26.7                          48.2

Developmental delay       61.6                 20.5                          16.2      [Ibid.]

I have a problem with the increased mainstreaming time.  The primary part of my job in Special Ed in the early 1990s was to go with junior high school Special Ed children into the regular classroom, mostly for music, practical arts, and home economics. There were exceptions when I accompanied unusual students into math or social studies.  As originally planned by IDEA, a special education certified teacher was expected to be with the disabled children in a regular classroom. That seldom happened.  If the school district had money, the children would be mainstreamed with a certified teacher who was not hired as a classroom teacher. If that wasn’t possible, then a careful district would hire a college graduate with complementary skills.  Poorer, or less careful, school districts hired whomever they could get to work for a fairly low salary.

Time away from the MMI (mildly mentally impaired) self-contained classroom provided a respite for the Special Ed teacher.  The children gained little by mixing with regular junior high students.  Even though I was very good at translating relevant instructional content into a core that could be temporarily grasped by my charges, I doubt the children learned anything lasting.  They never truly mixed with the general population. They were ALWAYS viewed as different, apart. And they knew it.

The general student body was not made better for the experience. Some students would always be open, welcoming and kind no matter if the disabled child were in school, in their neighborhood, or anywhere else. Others would always be nasty. Only the parents of the disabled child took away a sense of “inclusion” however false the impression.  They wanted so much for their child to be like other children, which is completely understandable.  Many parents were deceived by IEP expectations. Some parents were simply in denial; a few demanding; others bewildered, exhausted, heartbroken.  There was a parent who wanted to know when his child would “snap out of it,” as if mental retardation was the common cold.  PL 94-142 focused a false light of hope on the despair of a parent with a special child. 

The light was as false as ship wrecker beacons on a storm tossed rocky coast. It robbed these children of precious hours that could have been spent to attain their unique potential.  Make no mistake; a child with an IQ of 40 CAN learn something useful to his or her life.  They need constant reinforcement and repetition to do it however. It is not fair to that child to be given false lights when safe passage is required.  It is not fair to take time away from developing their skills to prove a social scientist’s point. It is not fair to demonstrate daily that they are different and excluded. Special children need to be with their peers; they need to learn basic, practical skills; they need to experience the success of being who they are, not who some bureaucrat thinks they should be. 

They need a success like my cousin Mickey has achieved through ASPIRE’s independent living and work program.  Today Mickey “has learned household skills…caring for his clothing and appearance…he earns a paycheck…shops…dines out.” Mickey lives in an ASPIRE community of peers where “he has thrived.” [Letter from ASPIRE 6/12/2012]

Thank heavens most special children are no longer hidden away and intellectually neglected like Jimmy.  There is no shame in having an intellectually impaired child or sibling or cousin or neighbor. There should be no unrealistic expectations promised to those children like Sharon, mainstreamed to nowhere, never given the chance to fulfill their unique potential within a special peer community.  Mickey achieved self-respect as well as the regard of his family and friends. Ironically, Jimmy and Sharon shared the same, lonely fate—PL94-142 notwithstanding.