Courtesy of “Google alert” on “down syndrome”, I noticed a blog tonight, written by a mother of a 14 year olf girl with Down syndrome. “Gee, this should be interesting”, I thought. It was. But not as I had expected.
This blog was negative. So much so, that I only came across a positive statement after one and a half pages of reading. At first, I even suspected that maybe the blog wasn’t even written in truth by a mother, but by someone trying to show the world how “awful” Down syndrome is. A bit more reading made me feel that maybe it wasn’t a fake, but… it was still VERY VERY sad.
I am assuming that this lady’s child is not as intellectually advanced as Ricki (who is in the lower end of the “easy” level of “retardation”). (Sorry, technical term only….) I will assume for argument’s sake, that she is somewhere in the “moderate” range. (I would say “low moderate”, but sometimes kids when taught right, surprise us all.) And what I am going to write now is not only gauged by what I have experienced in raising Ricki, but in talking with hundreds of mothers (Israel has a lot of kids with Down syndrome, and I am one of our national coordinators), as well as extensive reading.
My regular readers will all know that I do not whitewash nor “Pollyanna” my relationship with Ricki. But my love and respect show through everything I write. I feel very strongly that if you want to raise your child to with special needs to be a person you can bear to live with, LOVE IS NOT ENOUGH.
1. You have to believe that your child can learn. And believe me, they can.
2. You have to respect them as individuals. You need to approach them from a direction that takes into account what they want for themselves. If your child is not learning, ask yourself “How can I do this in a way that will work?”
[This reminds me of a story that I heard from a special educator who works for Feuerstein institute. She told how she had a class of teens who had never learned to read (Hebrew). So she started the new year of studies by asking if they liked computers. She received an affirmative answer. So she explained how they need to know the English alphabet in order to do certain things on the computer. So they were very excited and they learned the ABC’s. Once they had done that, she pointed out to them that if they could learn English, they were smart enough to learn Hebrew. And they did. But first they had to believe in themselves.]
3. If you are having behavior problems, and don’t know how (or are not able) to apply behavior modification techniques, GET HELP. Ask the experts. It is hard work, and I know that I am not always 100% here, but it sure beats living with obnoxious behavior.
4. Your older child, teen, or adult with Down syndrome is NOT a BABY. They are a person with Down syndrome. You have to expect them to act their age, as much as possible, by giving them the education, and possibilities to succeed. The more you can treat them as (future) adults, the more interested they will be in meeting your expectations.