Saturday, April 18, 2009

The Weird Blog

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.


Amy said...

Excellent post!

Have you been to the Feurestien Institute? I wanted to visit when I was in the Holy Land but the tour was waaaay to busy.

firemom31 said...

Nice blog...and I don't mind being weird at!

rickismom said...

Amy, yes I have been to them, and I even took the first half of the IE course, as well as the basic IE.

Firemom, I wrote more about an hour ago to you. Best of luck!

Something Different said...

Unfortunately, I know of a special needs mom who has no faith in her daughter's ability to learn. And she has her daughter so convinced that she can't to xyz that she actually can't.

You make great points here...

Sharon said...

Thank you for this post. I will keep these in mind in the years to come.

I will say that I have met parents of typical kids who are so negative and underestimate their kids. Unfortunately, some parents are just that way - which is so sad, both for them, and for their children.

Anonymous said...

Firemom is raising a granddaughter with Down's. I can imagine that could make it even harder to deal with. Look at her other blogs and you'll see how much she has on her plate...

rickismom said...

Yes,annonymous, I saw firemom's situation was not regular when she made her replies to things I had commented on her blog, which was after I had written this post.
[Note that I did not link to her blog, as I did not want to point a finger of blame or critisism; she was the one who let the cat out of the bag (that it was her blog).]
However, the main point of my post is still VERY valid: