Abilities Within Disabilities­—

The Challenge Of Fitting In While Being Different

By Nancy K. Crevier

(As part of an ongoing series on special education, this report looks at transitioning into the teen and young adult years for children with disabilities. Names have been changed to protect the privacy of individuals in the story.)

There are milestones in parenting: the first word, the first step, learning to read and write, the first school dance, the first crush, and the first real date. Getting a driver’s permit and then a driver’s license is a huge milestone for teenagers, as is the preparation for post-high school education. They are all baby steps on the journey to young adulthood met in approximately the same way, at approximately the same time, for most children.

But when a child is disabled, the milestones are farther apart, the journey is longer, and along with dreams and hopes, some of the milestones fall by the wayside. As a child with disabilities reaches young adulthood, some parents and families find they must rethink expectations.

In 1973 the Rehabilitation Act became federal law, banning “discrimination in federal programs and services and all other programs or services receiving federal funds.” It was the first civil law guaranteeing equal opportunities to disabled people.

In 1975, New York Governor Hugh Carey pledged to close institutions and move residents into communities, following the Willowbrook School scandal, in which residents were confined in despicable conditions — a similar issue at other schools for the disabled across the country at that time. Gov Carey signed the Willowbrook Consent Judgment that year, an act that enforced the rights of the mentally retarded and developmentally disabled. The class action lawsuit filed by Willowbrook School residents led to the deinstitutionalization of the mentally impaired. It was the impetus for mainstreaming the disabled into schools and communities, and other states soon followed suit. It was not until 1990, however that Americans with Disabilities Act was signed into law, leading to educational reform.

It was during this period of reform, known today as “Best Practices,” said Cindy White, that her son, Lee, was born in 1984.

Lee has Down syndrome. He has an IQ of 40 to 50 (the average IQ is 100, with most people scoring between 90 and 110). At age 27, he is unable to read and has poor articulation. He can write his name, but not much else. Currently, he lives in a supported group home and holds a job.

It is a good life, but it is not the life Ms White and her husband, Tom, visualized for him when they first confronted the issues presented by a Down syndrome child.

“As a parent of a Down syndrome child and a normal child [Kate is two years older], I wanted Lee to be a part of the family, wanted him to experience all of the things Kate did. I thought at the time that it was the best way for him to be ‘normalized.’ We were getting all of this educational material about the importance of the first three years with a Down syndrome child, and how he could learn from normal kids to take on normal behavior,” she said. At the time, the Whites lived in Woodbury and many services were not home-based and required traveling more than 20 miles each way to received intervention services. “The developmental milestones that his older sister reached without the slightest effort were so difficult for Lee,” recalled Ms White.

The family moved to Pennsylvania when Lee was 3 years old. The original Tiger Mom, Ms White became a parent consultant for Gateways, an initiative focused on the inclusion of the disabled into schools and communities. She spoke at parent groups and researched how other parts of the country were including “differently abled” children. “I fought for inclusion,” recalled Ms White. “I didn’t want my son to be viewed as a freak. To me, championing this cause was important. I wanted to try to change the world to accept people with disabilities. I threw myself into that advocacy,” she said.

Inclusion of children with disabilities was still not common. Lee did not have access to regular education classrooms until he was in the third grade, following the 1994 landmark Raphael Oberti Case. Lee was the first child with a mental disability to ever enter classrooms in his school district in Pennsylvania.

Access To “Normal Life”

It seemed that the fight for gaining access to a normal life was winning. Through those elementary school years, integrating Lee into activities and program with normal children worked. “He was invited to parties, he was embraced by other parents, and he had loads of friends who came over to play and spend hours playing video games together,” Ms White said. His academics were clearly lagging, but she felt that in the long run, the emotional and social elements he gained through mainstreaming would do him more good than being able to add numbers or write a note.

Around sixth grade, though, the gap between her son’s cognitive abilities and others’ cognitive abilities grew. “Lee was starting to be more aware of his limitations, and so were we. Our hopes for reading and math concepts weren’t coming to fruition,” she said. The teachers structured jobs in the classroom for Lee that were outside of the academic scope — collecting papers, cleaning blackboards — to make him feel included in the classroom. His social life deteriorated.

“Kids who he had known his whole life, who used to play with him, began to ignore him and not include him. I don’t think they were being intentionally mean. It is just that age when you don’t want someone different around,” said Ms White. She questioned whether her telling Lee he could do anything if he tried and encouraging him to be a part of the normal group, tactics that had worked so well in younger years, had been in error.

All of a sudden, the message was changing: You can’t do everything.

Transition to high school was even harder. “I was no longer asking for people to embrace an adorable little tow-headed blond. I was asking them to accept a 160-pound young adolescent with poor articulation, a crew cut, and complexion issues. I questioned what I was doing, every day. Lee started his freshman year when we were still in Pennsylvania. I remember going to the first big high school football game that fall with him, and watching him try to blend in and talk to all these kids he had grown up with. They didn’t want to include him, and he didn’t understand. It was heartbreaking,” she said, “for both him and for me.”

Facing Reality

The White family moved to Newtown at the beginning of Lee’s sophomore year. It was a challenging time. Their daughter was developing her own autonomy, a process Lee did not grasp. “He didn’t understand why he couldn’t go out with Kate and her friends; why he couldn’t go out at night with friends; why I had to drive him everywhere he went. He had a lot of anger toward me. Even as a normal adolescent, a person has to come face to face with limitations,” Ms White said.

“I really questioned everything we had done. We had had dreams and goals, and now we had to face the reality that it was not all coming together,” she said.

Normal adolescent behavior had to be modified for Lee, she said, and they all had to realize that his behavior would be judged very differently, because he is disabled. “He would see kids in the hall at school hugging and kissing, but I was telling him you can’t be physical with people you don’t know well, unless it is invited,” she said. Because Lee is very affectionate individual by nature, Ms White found it necessary to teach her son about personal space and stepping over personal boundary lines. What might be viewed and responded to as normal high jinks for normal teenagers — bad language, playful punches, even mooning — could have serious consequences for someone like Lee.

As he became more socially isolated, Ms White started taking Lee to Department of Mental Retardation-sponsored dances at WestConn. “The first time, he turned to me and said, ‘Are you kidding? You’re dropping me off with these people?’ I had to have the discussion that he was not different from ‘these people.’ It was like he experienced a reverse discrimination, not wanting to associate with other disabled people, because he could see they were different,” she said. That battle went on for several years, she said, before Lee finally found his peer group.

He was fortunate that before high school graduation, as others around him were planning for the next milestone of college, that NHS special education teacher Jill Gonski started a pilot program. “Lee went to the WestConn campus and audited courses. We jumped on that opportunity. Academically, I don’t know if he gained anything, but he was with other young people his age. He could ‘go to college,’” she said. It was through this program that he met and maintained a few contacts.

After graduation, Lee faced an uncertain future. He was still at home. He relied on his mother for transportation, including to his job or to the gym.

Learning Independence

When Cindy White heard about the Chapel Haven transition program in New Haven, she begged them to take Lee, even though he functioned at a much lower level than most of the young people at the boarding school. “They did, and we are so grateful. Lee learned the skills that he needed to live independently.”

She admits to struggling within over the benefits of inclusion, as Lee progressed through young adulthood. “There were times when forcing inclusion on an ideological basis may have done him a disservice. There are times when inclusion is of great benefit, and other times, it would have been better to focus on his individual growth. But educational research as Lee was growing up was telling us how great inclusion was going to be…”

Acceptance of those with disabilities by the general population is still a huge issue, said Ms White. People remain, as she readily admits she was prior to giving birth to a Down syndrome baby, afraid of the mentally challenged. “The world is still an unfriendly place for people with disabilities,” she said.

But without inclusion in his early years, she does not believe that Lee would have progressed socially and emotionally. “I believe that we accomplished incredible things through those years by gaining access for our children to more normalized settings. We helped open the world up for people with disabilities,” she said.

Two years ago, Lee moved into the supported home. “My husband and I have worked together for the last 27 years to give both of our children the confidence and skills to be happy, productive, independent, and contributing members of their communities. I believe that we accomplished that,” said Ms White, “for both of them.”

High IQ And Higher Hurdles

Like the Whites, Deb Jones and her husband, John, have two children. Their daughter will be a senior this fall. Their son, Darwin, will be a sophomore. This fall, he will enter a regular private school classroom the first time in three years. Prior to that, Darwin, who has dyslexia, attended a special boarding school for three years, for children with reading disabilities.

Dyslexia is a language-based learning disability that hinders the reading and writing process. “The brain actually functions differently in a dyslexic person when reading,” said Ms Jones.

“We noticed when he was very young that language was a struggle,” Ms Jones said. Rhyming words was hard. Memorizing the days of the week was hard. “He had some organizational skills issues. Darwin always had a unique way of thinking, though, and was very creative,” she said. He blended in.

As soon as her son became school age, the battles with reading and writing became apparent, and wore on his self-confidence. “He is very smart. His IQ is somewhere above 130,” said Ms Jones, “but he felt stupid. He saw all of these other kids mastering skills that he struggled with. It was frustrating.” Her son experienced social isolation as he moved through the elementary years, because one of the difficulties of dyslexia is that it is an “unseen” disability, said Ms Jones.

Darwin was diagnosed with dyslexia when he was in the fourth grade. “By then, he was perceiving other kids as not accepting him. I was very honest with him, once he was diagnosed. I told him he learns differently and that is okay. We talked to him about famous people who are dyslexic.”

Because he is very intelligent, Darwin understood his disability, but it did not do much to keep him from feeling different from his peers, she said.

When he was 11 years old, the Joneses decided to pull Darwin out of public school and send him to Kildonan School in New York, where he would receive one-on-one reading help every day, along with a regular New York school curriculum.

“Boarding school for Darwin was the hardest thing I had to do. You become very protective of a child with disabilities. I stayed home to raise my children, and I wanted to be there for him. It was hard to let go and let him get what he needed,” said Ms Jones.

Excluding Darwin from the mainstream was a positive experience for the Joneses. He flourished at the school, and was surprised to find there were other people with dyslexia. With Darwin away at boarding school, it also gave their daughter a little break from the constant struggles and frustrations in the household that occurred when Darwin was at home. “It was not always easy for his sister. She gets tired of hearing about dyslexia,” said Ms Jones.

Mainstreaming is extremely important for people with autism or mental disabilities, said Ms Jones, who runs a support group and works for a foundation that provides grants for those with learning disabilities. “But my son needed basic skills. It was necessary for us to pull him out of the mainstream on a temporary basis, for his good. It’s a very individual decision,” she said. The intervention proved beneficial to Darwin. “He gained so much. He can read at this point, and has gained self-confidence. I’m confident he will be what he wants to be and has just as much chance as anyone,” said Ms Jones.

The Joneses are pleased that Darwin will be in a regular class this fall, though. He will receive extra help from teachers, and Darwin and his mother are writing a letter to his teachers to help them know “what he is all about. I hope I don’t have to intervene often. Life isn’t going to be in a bubble. We want him in the mainstream,” said Ms Jones.

Being Different, Fitting In

Unlike Lee White, Darwin’s disability will not prevent him from reaching most of life’s milestones. He will get his driver’s license, and he will go to college. He will someday hold a job. “Outwardly,” said his mother, “you cannot tell him from any other boy his age. He has the drive to be successful, and there is a lot of technology that assists people with reading and writing disabilities now.”

She agrees with Ms White, though, that the world remains an unfriendly place for people with disabilities. “My son told me that when he tells people he has dyslexia, people treat him differently, like he’s not intelligent,” she said. “It’s hard for a person with disabilities to feel they fit in if they don’t feel accepted,” she said.

There is a great need for society to change in the way it views people with disabilities, said Ms Jones. “Everyone has something to give back to society. We need different types of people in this world,” she said.

It is only through continued education about the different kinds of disabilities that she believes attitudes will change. “If we teach our children it’s okay to accept people with disabilities, they will carry that through. But it is the adults’ attitudes,” she said, “that stand in the way.”