Monday, November 8, 2010
The Right to Be Unique
When my Aunt Jean was pregnant in the 1950s, she contracted German Measles. As a result, her baby, my cousin, Bonnie Jean, was born in the 1950s with cerebral palsy and could not walk or talk. Despite friends’ and some medical specialists’ advice to place Bonnie Jean in a home and “forget about her,” my aunt and uncle chose to have their daughter stay with them and their older daughter. They took Bonnie Jean everywhere. I remember my Uncle Lee carrying her up the stairs at our rented shore house; and to family gatherings. She was happy, though she was never even able to say “MaMa.” When she was only ten years old, she died of pneumonia. My aunt and uncle never regretted their decision to have her as part of their family.
When I was college senior, my university hosted one of the first Special Olympics events held in the area. We students volunteered to help the participants, students with mental and physical disabilities. Many of the participants came from private schools or their parents’ homes, as they were not permitted to attend public schools.
Today, thanks to the battle and pressure of parents, in 1975, The Education of All Handicapped Children Act (EAHCA) became law. It required that all schools receiving federal funds provide equal access to education for children with special needs. Schools, county services, and pre-schools began hiring special education teachers for separate classes.
In 1990, EAHCA was renamed the Individuals with Disabilities Education Act (IDEA); and has since received a number of amendments in 1997, 2004. In 2009, the IDEA received additional funding in 2009 through new legislation supported by President Obama.
They Are People, First
While raising my three sons, I directed two part-time community recreational programs for children and adults with unique needs for over twenty years. Our participants attended concerts, theme parks, and the shore; had dances and parties and also participated in Special Olympics. Some of the program’s participants came from the area’s first group homes established in the early seventies, taking former residents of huge institutions in and around Philadelphia that were shut down. Other participants who attended still lived at their individual home. Some of the participants’ families were of the Mennonite faith who, before many other programs were established, had their own caring network to support unique children of their congregation in both church and work programs. A group of these parents obtained funding to start Ridge Crest in Sellersville so their severely disabled, medically-fragile children could be cared for in a caring facility in their area and that family could visit daily.
My staff and I and volunteers, including my own sons and mother and brother, had wonderful experiences with the participants in these programs. They became our friends and we learned they are like us, but better in that they were more accepting of one another; looked after one another, and even “interpreted” for one another when it was difficult for us to understand some of their friends’ speech.
We had numerous funny and poignant moments. Once I took our participants to see a wrestling match at a local high school. The participants were excited; but after a few minutes watching the match, they came up to me and said with disappointment, “Mrs. Huff, this is NOT wrestling!” Wrestling to them was the professional wrestling, not the high school wrestlers we were watching.
When my niece was two years old, she had unexplained seizures. After test results, it was discovered she had the genetic disorder, tuberous sclerosis (TS). Persons with TS have tubers that for some unexplained reason grow in their bodies’ organs including their hearts, kidneys, and brains. My niece had some learning difficulties and was classified as learning disabled by her school district. I was honored to be “Aunt Advocate,” for her, attending every IEP meeting with her mother from kindergarten until her graduation this year from high school. My niece was the first child in the school district to have this disability; so her mother had to educate my niece’s teachers and principals about her daughter’s needs and strengths.
In attending her graduation ceremony this year, it was wonderful to see my niece along with other graduates with unique needs receiving their diplomas. She and the other special students had attended many regular classes. How different from the years ago when children like them were “warehoused,” in large buildings and thought that they could not learn or contribute anything to our society! (It is very important to note, too, that many students with disabilities have above or above-normal intelligence.)
Now my niece’s parents and I are evaluating work programs that will best fit her needs now and in the future so she can live a full adult life with satisfying work and an appropriate social life.
After these years, I have observed that it is due to primarily the mothers’ pushing and pressuring institutions and educating the public, educators, doctors and professionals about their children’s unique needs; that has enabled their children to be mainstreamed into today’s society. These mothers are asking for assistance to help their children live the most fulfilling and normal lives they can, just as all parents wish for their children.
I do not want to cut fathers out of the picture here, because they, too, have cared and supported and continue to do so for their special children. But like our featured author, there is something about these mothers’ persistence and tenacity to see their children get treated fairly, no matter what the obstacles, that has obtained the rights for all the children and others with disabilities, that exist today.
Being a parent is challenging in itself, but for a parent of a child with unique needs, it often means a lifetime of responsibility and commitment. Many parents get so exhausted from the stress and “battles;” by the time their children are adults that they just cannot fight any more. Thankfully, there are friends, relatives, and yes, the next round of parents to take up the banner. They, we, will continue to push to see that society will accept all of us, no matter what our abilities or disabilities, and as human beings who are loved equally by a loving and caring God.
“It is said that a society is judged by the way it takes care of those who cannot care for themselves.”
How You Can Help Children with Unique Needs
*Respite Care – Volunteer to give parents and caregivers a stress break by watching their children while they shop or go away for a weekend.
*Advocate – Do not let politicians or schools cut back or eliminate programs that educate and help instruct these children and adults to be self-sufficient.
*Volunteer – Be an advocate, tutor or be an aide in classes and other activities.
*Invite special children to your child’s party or take them on vacation with you.
*Hire – When they are adults, give them jobs.
Suggested Online Resources
http://idea.ed.gov - Individuals with Disabilities Education Act site
www.ada.gov/ - Americans with Disabilities Act
http://www2.ed.gov/parents/needs/speced/iepguide/index.html - Guide to Individualized Education Program
www.ThinkBeyondtheLabel.org - Committed to making the business case for employing people with disabilities.
I wrote today's post as part of the WOW-Women on Writing Blanket Tour for
Not Just Spirited: A Mom's Sensational Journey with Sensory Processing Disorder
by Chynna Laird. The book is a memoir of a mother fighting for a diagnosis when
countless doctor's told her that her daughter was just "spirited". Chynna shares the
heartbreaking reality of mothering a child with a severe "No touch" rule. She calls it
"Mothering without touch." Although Not Just Spirited is the perfect match for parents
of children with SPD, the determination and victories shown in the book will
encourage anyone parenting a child with special needs or working to overcome
an obstacle in their own life.
Chynna has also written a children's book, I'm Not Weird, and resource book about SPD,
At-Home Strategies for Managing Sensory Processing Disorder: A Guide for Parents .
She is now working on another book White Elephants. When not writing, Chynna
is a mom to her three young children and a student working on her BA in
If you comment on today's post you'll be entered to win a copy of Not Just Spirited
To read Chynna's post about parenting and a list of other blogs participating in Chynna's
Blanket Tour visit The Muffin. http://muffin.wow-womenonwriting.com/2010/11/welcome-to-november-blanket-tour.html