Inclusion in the Community

As parents, we are at the forefront of integrating our children with disabilities into the community. This is not always easy, as when our son screamed and cried when we took him with us to a large DIY store. He was tired, young and overwhelmed by the echoing sounds, the number of people around us and the extensive variety of things to see. He had a meltdown, and I was close, as store staff complained about the noise our son was making. I had a few polite, but pointed remarks with the shift supervisor as to the nature of our son’s disability and his sensitivity to sensory stimuli, as well as my expectations of the store staff in accommodating customers with disabilities. I was a new parent in “disability world” but it mattered that we begin to educate our community on inclusion and acceptance of those with differing abilities.

Now our son is a young adult and wants to go almost everywhere that we go. Over the years of exposure to different environments, he has learned how to adjust to the different demands each places on him. I continue to advocate for his acceptance by the staff wherever we go, such as talking to a waiter (in private) about why we do not call ourselves or others “retarded” after the waiter called himself that for mixing up our son’s drink order.

Integrating (or including) our children requires courage when we would rather leave them home, avoid the stares and comments and get through the shopping or appointment in half the time. It means that we expose our children to a variety of experiences from an early age so that they learn over time how to behave in those environments and how to get what they need from the experience, whether it is ordering a meal or making a grocery purchase or learning to move to music. Exploring the community with our children enriches their lives as well as the lives of those who may not have regular contact with people with disabilities. The goal is that our children will have friends, employment (preferably paid) and activities with people from a mix of backgrounds and abilities, which is what makes up an American community.

Creating a Vision Statement: Planning the Future for Your Child with Disabilities

For parents of children with disabilities, it is simple to become caught up in daily life, to see each day as a struggle requiring all of our effort and energy. Without a vision of our child's future, however, our efforts lack a target on which to focus.  That is why IEPs have goals - in order to determine progress, we have to know progress toward what. Life, like IEPs needs goals so that we know where we want our child to be in three, five, ten or more years.

It is essential to schedule a block of time to prepare a vision statement. If it has been awhile since you really thought about the full range of possibilities for your child's future, then it may take some time to complete the vision statement. Make a list of what you want for her life - fulfillment, love, happiness, health, friendships, opportunities. Then consider how these will be realized in her life. Think about the following questions and envision how they will look in your child's life. Ask your child to answer these questions and learn what she wants for her life. If your child cannot answer some or all of these questions, then consider asking others who are close to her for their insights.

• What are your child's interests?
• What are her strengths?
• What is the nature of her disabilities?
• For a school-aged child, in what classroom environment would she like to be? (This does not have to be the kind of class she is in now, but where ideally you want to see her within the next three years. This is the vision that you hope will be created in your child's life, so nothing is off the table of possibilities, including true inclusion, where the proportion of students with disabilities to the class size is the same as naturally occurs in society.)
• For an adult or transitioning student, how will she be employed? (This can include self-employment, paid employment and volunteer work.)
• Where will she live and with whom, if anyone? (Home ownership, an apartment with a friend or support person, a group home, with family, etc.)
• What will her community look like? How and in what will she participate in the community? (Playing sports, engaging in the arts, joining a book club, belonging to a religious organization, etc.)

Write down your answers. Create a word picture of your child and her future. Include photos of your child doing something she enjoys or that shows her capabilities and strengths. Then print off copies or consider creating a PowerPoint® presentation to share the vision with the people who can help make the vision come true - teachers, therapists, the IEP team, family, friends, and service providers. Help them get to know your child as you know her, and not as someone defined by the label of her disability.

Review the vision statement before the annual IEP, IFSP or ISP meeting to keep the vision in mind when developing the next plan. Update as necessary and at least every 3-5 years. Ask your child for input and be supportive of her dreams, which will probably change  over time, just as yours do. Include her dreams and goals in the vision for her future.

             

People with disabilities have more options than before, and it is important to challenge assumptions about what they can do. They have the same right to make mistakes and take risks as anyone else. Let us get out of their way.

Last year I reviewed five parts of "Unfit for Work: The Startling Rise of Disability

in America." My comment to NPR - "I did not hear my son's story - that as a young man with intellectual disabilities (and we do not define him as "a disabled man," he is a man who happens to have disabilities) and with autism, employers do not want to hire him for wages. He does volunteer work, but he cannot find paid work, in part because of employer attitudes, customer attitudes, lack of job coaches and other employment supports. He is hardly living the high life on SSI or developmental disability funding. This series is unbalanced and biased. Where are the interviews with people like my son or with adult service providers such as The Arc? Where are the employers? Where are the parents and family members who spend up to 21 years fighting the school system for an education that will prepare their child for independent, community-based adult life?"

 

The problems finding employment for people with intellectual and developmental disabilities have not diminished. As of 2012, one in three living in the community lived in poverty, fewer than one in four was employed and less than 12% were employed full time, year round. My son is still volunteering in order to develop work skills, especially the "soft" skills of communicating with other employees and behaving appropriately in a business setting, and to make connections in our new community that might lead to paid employment. That employment dream seems more distant as the months go by, and his confidence is sapped. Even finding organizations that will accept him as a volunteer is difficult. One charitable organization that turned him down was later advertising for volunteers in local free papers. Having had a year of work-study experience in stocking shelves in a grocery store should have qualified him to stock the charity's food pantry shelves. The saying that "where one door closes, another door opens" does not seem to apply to employment for individuals with disabilities. 

We need to commit to employing people with disabilities who are willing and able to work. It may take some ingenuity, such as in job carving. In job carving,  people with disabilities are hired for certain tasks they can perform and freeing current employees to concentrate on their primary work. For example, a company might hire people with disabilities to make copies and collate mailings, so that current employees can focus on developing the content of the mailings. Employing people with disabilities can benefit employers, employees and the economy as people with disabilities contribute meaningfully within their community.

Can it really be five years later?

It has been a long time since I last looked at this blog, and a lot has happened in five years. My parents passed away four months apart. We took the children to England to see the town and country where they were born. Our children finished high school. After more than 20 years we moved from Maryland back to New York, home state for my husband and me, and back to the city where we met in the early 1980s. My mother-in-law, the last of our parents, died last year. This year I retired from the practice of law, and now I am volunteering as a Court Appointed Special Advocate for children in the foster care system. I am also a 2014 graduate of the New York State Partners in Policymaking, renewing my commitment to advocating with and for people with disabilities.

I was re-reading some old IEPs (Individualized Education Program) and looking at the summaries of strengths and weaknesses, the goals and the objectives. We are much better at seeing the weaknesses than finding the strengths of our students with disabilities. "Problem behaviors" are more apparent - aggression against people, work avoidance, eloping, self-stimulating behaviors (such as spinning around), self-injurious behaviors, and destruction of property. Somehow, it seems as if we need the highest power microscope to see the strengths and the positive behaviors and the progress the child is making. And so we work much harder to control their behavior and overcome their weaknesses than we do at building on their strengths and aptitudes and preferences. If a student has a sense of rhythm, build on it; incorporate more music in the program, perhaps during breaks. If a student is a visual learner, use pictures and models and sight words. If the child shows a gift for color, encourage the artistic side. This has multiple benefits. It keeps the student more engaged and increases focus and time on task. It builds upon the child's strengths so that the child knows success and accomplishment and what it feels like to be proud. Then the example of the student's successes can be used to encourage the student in new areas of endeavor, including areas that are known to be challenges. 

It concerns me, especially as I meet and learn from self-advocates, that we are trying not only to educate the student with a disability, but to change fundamentally the person. Every level of ability is natural, but we do not accept this. We push the child with autism to look us in the eyes and learn empathy and social skills, and the child with ADHD to focus. Are we not rejecting these students and telling them that they are inherently wrong? As they have told us, people with disabilities are not broken and do not need to be fixed.

Three Words for 2009

What are your themes for 2009? On his blog, Chris Brogan chose three words to summarize his goals for 2009. These are my three: health, growth and persistence.

Health is a renewed commitment to monitor my physical, business, relational, spiritual, and emotional health throughout the year and to improve my health where it is flagging.

Growth is the goal to continue to acquire new skills and insights at work (in both my legal work and teaching) and spiritually, so that I will draw closer to God.

Persistence is the key to both my health and growth goals - not to waver from the path, not to skip a day now and then (which becomes a week now and then, a month, etc.). It is so easy to begin in January with fresh resolutions, only to drop them within weeks. This year I am committed to daily check ups.

Red Nosed Reindeer and People with Disabilities

My family was watching Rudolph the day before Christmas, and I realized how much it says about our culture's attitude toward people with disabilities. Throughout the movie, the majority of the characters shun those who are different and differently abled. Even Santa's prejudice is revealed, although he learns his lesson.

The island of misfit toys reminded me of the low employment rate for individuals with disabilities. Nearly everyone can do work of some kind, and most people, including those with disabilities, want to be gainfully employed. People with disabilities, however, are often denied employment, even at tasks that they can perform. Many of those with significant support needs who are fortunate enough to be employed work in sheltered workshops - like the island of misfit toys, these workshops are segregated work places that offer little interaction with peers without disabilities.

Rather than shunting those who look, act, move, speak, or think differently aside, why not recognize that people of all abilities belong in our community, fully integrated at work, social life, religious communities, etc. Why not recognize that the full range of abilities falls within the natural spectrum of humanity? Why not give them the respect that is due to every person?

Earlier this month I had an opportunity to speak to students in a speech-language pathology class about fragile x syndrome and parenting children with disabilities. Few people, including therapists, know what fragile x is, so it was a wonderful opportunity to share what I've learned over the past 16, nearly 17 years. What I did not say, however, was what a blessing the children have been to me, and how much I have learned about compassion and empathy, about the hearts of others, and about love that asks for nothing but love in return. At this time of year, it is important to remember these lessons and to cherish the time that I have with my children and with others affected by disabilities.