Monday, January 4, 2010

More Renegade Down Syndrome Parenting Thoughts

This thought is continued from Saturday's post, so if it seems incomplete, it is because it is. Read Saturday's post first, then this one. Then come back for more later this week when this line of thinking will hopefully have come full circle.

I was at a mother's get together (for mom's of kids with special needs) a few months ago. The organizer of the monthly meeting is a woman who is a retired special ed teacher. As we sat and talked that morning, she shared a story with me:

She shared a story about two local young men who both have Down Syndrome. One is an outgoing young man, not super high functioning, but an included part of the community. The other is a young man who was always considered to be fairly high functioning, but lives a very isolated adult life.

As a boy, one of the young men's parents had insisted their child be included in the local school system. He was mainstreamed all throughout school and expected to participate in his neighborhood school like his typical peers.

The other young man attended the special education school (the same school Charlie currently goes to 3 days a week). The school is pretty secluded, and there is no mainstreaming or reverse mainstreaming at all.

Can you guess which young man went to what school?

It may surprise you, like it did me. The young man who now lives an isolated life, uncomfortable being a regular part of the community, is the one who was mainstreamed.
My friend went on to explain that as a child he was quite high functioning, and is still a bright young man, but he was very isolated in his school environment. His isolation and subsequent poor coping abilities affect him today. His parents myopically insisted that he be mainstreamed. Insisted that he be given every opportunity to be a "normal" kid. The problem was the mainstream school was not set-up to support his needs socially, and he was always behind his peers academically. He had little in the way of true friendship. He may have been a part of the "regular" community by attending the mainstream school, but he was not armed for success.

The young man who is not considered high functioning attended a school that serves people with disabilities exclusively. He was nurtured in a environment that supported his specific needs. Every staff person who ever worked with him had special training in how to support him socially, academically, and so on. He blossomed among adults and peers who accepted him just for who he was. His parents, by choosing the setting that was designed specifically for their son, never had to convince anybody of his capability or worth. He grew in confidence of himself and gained specific skills that help him to get by in the daily things of life on his own. Academically he is not as accomplished as his mainstreamed counterpart, but he is better able to care for himself with the skill set he learned. He has more confidence about his capability and belonging in the community.

As my friend told me the stories of these two young men, I wasn't sure where she was going to take the story in relation to Charlie. After all, Charlie goes to a mainstreamed preschool and the special ed school. Well, she ended by commending Ray and I for choosing the program we did. She said she thought it was a good choice to have Charlie at the special ed school to receive intensive training geared toward his specific needs, and to have him at the typical school to encourage him socially with typically developing students.

That aside, her story really made me think about some things.

I thought about that resolute decision that Ray and I felt Charlie should be included as a part of the community. That he should not be segregated based on his ability or diagnosis. The frustration that we have felt because the programs for kids with severe special needs in our community are based at a totally segregated setting, instead of the neighborhood schools. The uncertainty as we look toward Kindergarten and wonder where we will have Charlie attend: Our local school will have little expertise or set-up for his specific needs; the special ed only school has no opportunity for a mainstreamed experience.

Before Charlie started preschool, before his first IEP, I had visions of calling in the big guns at IEP meetings to convince the school district that the way of doing things in this county is antiquated. That kids with special needs deserve to be a regular part of the community, and that kids without special needs deserve to know a little diversity. I would mull over just how I would tell the district that they should better be prepared for my son to attend his neighborhood school along with his brother, because that's where we would be showing up on Monday.

Now, the set up in this county is one thing that I could discuss, because I DO think it is a bit antiquated. I think when the special ed school was established it was absolutely cutting edge to even have a place for children with special needs to be educated. I just think that now-a-days the local schools should be able to accomplish the education of kids like Charlie, who have significant disabilities but are still pretty sharp cookies, in house. I think it would be more in line with the heart and soul of the IDEA act if that happened. But I'm getting side tracked here...


Oh, Charlie. He is a piece of my heart, and listening to the stories of the two young men, my eyes began to wander away from the next IEP meeting, and toward Charlie's future. What we want for Charlie more than anything is for him to be able to take care of himself. We want him to have true friendships, and to never feel lonely. We want him to feel safe and secure. We want him to be able to have as much independence as possible, and participate in the community through work and leisure.

What I don't want for him is for his mom and dad to make him a martyr in the cause of special needs parents who want to feel like their kids are seen as "normal". (Which I am not dissing by the way, because that is a very real thing that us parents of kids with special needs face. That piercing pain in the side when we realize that other people just are not "getting it" when it comes to our children, who we rightly behold as amazing.) And, I don't want to send him into a situation that is not set-up for him, just because, really, it should be set-up for him.

So what do we do?

That's enough for now. More later.


datri said...

Well, you know Kayla goes to a private special ed school. It's what's right for HER and what works best in the area that we live in. That said, I do volunteer at the local elementary school, often at lunch. There's a 1st grader there with Down syndrome, she has a 1:1 aide and I just love watching her to see how she is doing. One day I heard her fellow classmates begging her to sit with them! It really warmed my heart. So that setting is what works for HER.

I've never believed in inclusion at the cost of my child's education, safety, and general happiness. How many news stories do I read about poorly trained staff just sticking kids with special needs into isolation rooms or taping them to chairs or worse? And I certainly don't believe in teaching the teachers how to teach my child. If I have to that I might as well homeschool! So, in our situation, I'm very happy where Kayla is.

Anyway, you'll know where Charlie needs to be as you go through the process. You'll know when to fight and when to let go. It all depends on the people involved in the situation at any particular time. But go with your heart and head, not what other people think is the "right" way to do it.

Brandie said...

I've gone over these same things in my own head and Goldie is only 2. Your district sounds a lot like ours. For special ed they would have Goldie bussed to the other side of town. If we want her to go to our local elementary school she would have to be included in a regular ed classroom. I know some of the teachers wouldn't be able or willing to meet her needs.

On another note, I have an uncle, he is 50, who is intellectually disabled. My grandmother fought to have him included in regular classes. My dad says this was a mistake because the school just passed him along to keep her happy and he never really learned anything. As an adult his only social contacts were family and even those he keeps brief.

I've been wondering if homeschooling would provide a better option for Goldie. We haven't told anyone that because we're under a lot of pressure right now to put her in prek. Looking forward to the next installment. :)

Lisa said...

Kim, this series is beautiful, thought-provoking, and helpful. Thank you so much for sharing your heart here.

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