Special Needs profile
“Make it your own!” has been the multi-season mantra of American Idol judges who encourage young singers to stand out and be different. It’s funny, when you think about it, because that’s a big switch from what kids have been conditioned to do. We spend our childhood trying to fit in by looking like and acting like everyone else. When we get older and are competing for jobs — as a national musical artist or a salesperson — we realize we need to be different from the masses to get noticed. We finally learn, perhaps too late in life, that diversity is good. But in first grade, you just want to look and act like everyone else. You want to ride the same bus and wear the same sneakers as all the other kids.
For children with disabilities, fitting in is hard and being “different” hurts. It would be helpful if fellow students are taught by their parents that it’s OK to be friends with a child with a disability and to be more understanding and compassionate. But, unfortunately, mom or dad most often does not know how to handle this, either. Heck, before I was a parent of a child with a disability, how much did I know and understand?
Here are some tips and tales about kids with disabilities and what we parents wish you knew.
Riding the Little Bus
My 6-year-old daughter Aurora enjoys riding her little bus, and the personal attention that comes with it. Her bus comes about 10 minutes after her sister’s big bus, the one all the kids in the neighborhood ride. The downside to this arrangement: the other neighbor children don’t know Aurora because she rides a different bus and is in the special-ed classes. And she does wonder “when” she will finally be able to ride the big bus.
Due to a hospital mishap at birth, Aurora has brain damage, officially diagnosed with cerebral palsy and epilepsy. As a result, she has developmental and motor delays and disabilities. What this means is she acts 4 years old instead of her second-grade age, wears braces on her feet and ankles, has little use of her left arm and hand, wears glasses due to cortical blindness, and has a one-on-one aide at school due to behavior issues that include hurting fellow students.
At first, we tried the big bus for kindergarten, but Aurora’s behavior was more than the bus driver could handle. Also, her sister and a neighbor let us know that Aurora was being taunted on the bus by older kids who were egging her on to misbehave. Per our request, the school principal watched tapes from the school video monitoring system. Unbeknownst to me, he called the involved youth to his office to talk with them. How did I find out this occurred? A parent called me and said the following: “My sons were scolded by the principal for an incident on the bus. Could you and your daughter come to our house so you can explain to them what is wrong with her?” Wrong with her? While Aurora may have disabilities, she is beautiful and friendly and funny and I grow more in love with her every day. Therefore, there is nothing “wrong” about her. Needless to say, I never went to that woman’s house.
Yet Another Step Away From ‘Normalcy’
The phone call I should have been expecting did eventually come from the principal − Aurora would now be riding a BOCES bus by herself. Yes, the “little bus,” the one kids joked about while I was growing up.
I began to cry on the phone. When the principal asked why I was crying, I replied, “When you are a parent of a child with a disability, every time he or she is moved yet another step away from normalcy, it’s just hard to accept.” (Now, I understand “normal” is just a setting on a washing machine, but that was the wording I chose to explain my feelings that day.)
I could have fought it, but you learn to choose your battles. The battle I was suiting up for was the annual meeting where her first-grade services were to be discussed and decided upon. My husband and I were ready to feel beat up, as we often had been made to feel like bad guys each time we were called to school for a behavior incident.
How do parents handle this kind of news and the feeling that they are being judged by medical and school officials? You just learn to become your child’s biggest advocate − from (as in our case) taking her dozens of times to Boston so she could be treated by the country’s top neurologists to fighting for a one-on-one aide so Aurora’s behavior wouldn’t result in a fellow student being seriously harmed.
Parents Don’t Get Manuals with the Disability
I never thought I would say these words: “Well, I’m sorry the brain damage didn’t come with a manual!” And I surely never thought I’d be saying them in anger to a school administrator who was making me feel guilty for my daughter’s poor behavior that day. She was rattling off my daughter’s wrong-doings (tipped over chairs, thrown toys, classroom aides being poked and pinched), almost if she was expecting me to give answers for the actions. I actually found myself being thankful I had another student at the school, so the administration wouldn’t write me off as a bad parent, since the general-ed sibling was so well behaved.
The reality is that parents of children with disabilities never get a crash course in how to handle what is thrown our way. But, since we live it every day, we can share tips with other parents.
Dresden Engle is a Rochester-based PR professional and writer, as well as a comedian and singer and proud mom of two second-graders.
A GUIDE TO WHAT TERMS TO USE
As we all strive to be sensitive and aware, here are some tips regarding using the least −offensive and most-respectful language related to people with disabilities.
Say “disability”: The preferred terminology is disability or disabilities used after the verb, as in “my daughter has a disability” or “my daughter has to undergo several therapy sessions due to her disabilities.” The label “disabled” implies the person can do nothing, when in fact a disability often only affects a certain part of the body and that person, in fact, can do many things.
Don’t say “handicapped”: Worse than “disabled” is the word “handicapped.” Guess where the word came from? (Prepare to be surprised.) It means that one with a disability always has her cap in her hand, looking for a handout … her cap is handy.
Say “accessible”: The word accessible is preferred, as in accessible parking or accessible entrance or restroom.
Other tips: Please refrain from the words “wheelchair bound” — those who use a wheelchair for mobility find it degrading. Other terminology frowned upon is saying one “suffers” from a disability or is “stricken with” a disability. Simply say “has a disability.”
Learn more about accepted terminology at:
• www.miusa.org/ncde/tools/respect
• http://inclusioninthearts.org/projects/about-deal/glossary-of-preferred-terms/
Tips so We All Can Feel More Comfortable on Either Side of the Fence
PLEASE DON’T ASSUME OR SAY THERE IS SOMETHING “WRONG” WITH OUR CHILD who has a disability. Rather, sincerely ask us what his or her challenges are, so you can learn, and in turn explain it to your child. I do my part by openly telling fellow parents about my child’s challenges; I know they want to know but are uncomfortable asking.
PLEASE ASK YOUR CHILD TO NOT “IGNORE” CHILDREN WITH DISABILITIES, even if it’s a little uncomfortable that they are “different,” with braces on their legs, yelling out of turn, using a wheelchair, using sign language, or talking to themselves. Yes, it’s OK to say “hi” to these fellow students, eat lunch with them, and play with them on the playground. I’ve been told by adults with disabilities that they are invisible to most people. Let’s start teaching this lesson early to our children, so no one is invisible, ever.
EXPLAIN TO YOUR CHILDREN WHAT THE WORD COMPASSION REALLY MEANS; not pity, but compassion as well as respect and acceptance.
BE COMPASSIONATE WHEN YOU ENCOUNTER A CHILD WITH A DISABILITY — visible or not — throwing a temper tantrum. I sometimes find myself telling strangers, “She has a disability” when we are being stared at in a store. I shouldn’t need to do that.
IF YOU WISH TO LEARN MORE ABOUT SPECIAL-ED PROGRAMS AT YOUR CHILD’S SCHOOL, especially since integration is now the trend, contact the principal or the district’s special-ed chairperson rather than a parent of one of the special-ed children. You have a right to ask questions and to be concerned about education and positive school experiences.
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