My friend Suzanne sent me this article about the VP-nominee’s infant son, from Michael Gerson of the Washington Post. It is a powerful reminder of how far these extraordinary kids have come, as a group, in the last 100 years … and how far they still have to go.
I ran into Suzanne at Curves the other day, and she told me that her daughter Anna (who has other, non-chromosomal challenges), who attends a regular high school, has been the basketball manager for the school team. “It’s been amazing to see how well the other girls interact with Anna,” Suzanne said to me. “The funny thing was, when I mentioned how well a particular girl got along with my daughter to other moms, their response was often something along the lines of, ‘Oh, you gotta watch that one. She’s pretty wild.’ Time after time after time.
“But they were great with Anna. I guess these girls related to her in some way — maybe it was because they sometimes felt like outsiders, too.”
special needs kids take down barriers. ones who “act out” or “misbehave” around others and/or parents will often be terrific role models for SNKs (while they’re together). And sometimes the “trouble” kid is “trouble” simply out of a need to be needed/noticed…which the sNK provides. I’ve often found that picking a kid and asking them for help with mine gives them a sense of purpose and responsibility that brings out nothing but the best in us all.
So, smile and nod to those moms and keep on letting those girls help. Long term, it’ll be good for everyone.
Heidi, Thanks for thinking of me and my daughter on your site. However, I do need to correct a significant error. This correction may help you and others understand the unique situations in the world of families of special needs children. My daughter does not have a chromosomal disorder. In fact, medically, on paper she has no disorder. She has what is sometimes referred to as a “hidden disability”. She has had all the genetic tests, blood tests, urine tests and a MRI (let’s see, am I forgetting any others?) All the results have been normal. On paper, she looks just like the rest of us. Her diagnosis (which is still not totally clear) is a mixed bag. She does not fit neatly in any category. As strange as it may sound, I have often times longed for a medical diagnosis that was clear. On the positive side, it has forced us all to look at her and her individual needs and make decision from there. Really, shouldn’t we be doing this for all kids?
My daughter’s original diagnosis is mild Cerebral Palsy (CP) and this was from observation only. Anna is not a typical child with CP as she is physically functional but she does have some mild characterisics. She has also been classified as “developmentally delayed”. That certainly fits but now that she is age 15 it really no longer applies. She has autistic characteristics but when I had her privately evaluated (for a hefty fee) the neuropsychologist said he would not and could not professionally give her a diagnosis of autism. He had observed her in the classroom and felt for many valid reasons this was not an appropriate diagnosis.
When asked about her diagnosis, I usually stumble and I even give different responses depending on my mood and the day of the week. Now, I usually just say she has a developmental disability. It is frustrating but okay because truly, as I said earlier, it forces all of us (myself, my husband, siblings, friends, doctors, teachers, therapists, etc) to look at her as an individual instead of a label….and that’s really not such a bad thing.
Also, just for future reference, there is a federal law titled The Individuals with Disabilities Act (IDEA) that entitles ALL children with disabilites to a Free Appropriate Public Education (FAPE) http://idea.ed.gov
So sorry, Suzanne! I fixed the mistake, and appreciate your taking the time to respond. Blessings, Heidi
I’m right there with you… mine have no diagnoses other than “developmental delay” and “lack of coordination” –real descriptive huh? Now, my oldest is almost 5 so you have about 10 years head start on me.
I’m actually very glad to NOT have a diagnosis because I don’t want my kids to be put in a box of particular expectations based on a diagnosis. This does happen and it only hinders the child. I want them to be free to stretch as far and wide as they can, with the only expectation being “let’s see how far you CAN go!”
For insight into my head. watch this http://www.youtube.com/watch?v=aLLMf43IQw0