Inclusive extracurricular activities

[Guest guest]

The only time we completely blind-sided a program (not by intention) was

when Jan was 5 and attending a Montessori school. That program was

totally inclusive and had no supports other than the head teacher

welcomed the opportunity to have Jan in the program. The second year

there, her brother attended the session for younger kids.

One day, when picking the kids up, I noticed that another Mom posted a

note looking for someone to car pool with to an after-school program in

kid gymnastics (Tumblebugs which was very early in kid gymnastics), so I

signed my two kids up. On the first day, both the other Mom and I

showed up. They had NO introductions. The kids sat down in a circle

and the instructor simply told the parents to come back in an hour. I

didn't even get to tell him that Jan didn't talk very well.

It went on this way for several weeks but one day I met the instructor

in the hall and he gave me his philosophy which was " develop the body

and the mind will follow " . As a kid who grew up as a nerd, this was a

new concept to me, but it certainly was right for Jan. She learned the

basic skills like forward rolls and being comfortable on a high balance

beam that simply gave her good gross motor control, so that wasn't an

issue that took much attention when she was trying to learn other things.

In general, she was " just a kid " in the neighborhood. She played with

the girls in the houses on both sides who were a year or so younger and

was in the " club " when the kids self organized one.

She was in lots of inclusive programs, but a few of them overtly

rejected her, even though she functioned well without much

accommodation. In particular, she was asked to leave Girl Scouts when a

new Mom became leader. She was also asked to leave a YMCA gymnastics

team training program by one of the YMCA staff. They recanted that one

almost immediately, but we didn't put her back in the program. I also

moved my S.O gymnastics program from that YMCA to commercial gyms where

I never had trouble being allowed to use their (much better) facilities.

Our attitude was always that Jan was our gift to activities. If you

don't want her, you can't have her ... and it is your loss.

A few years ago when I enrolled Jan in the Leukemia Society Hike for

Discovery, they knew she had DS, but they were not prepared to offer

much accommodation. In the end her Mom or I attended and took part in

most of the many training sessions and we both went with her on the

hike. The real turning point on her acceptance was a very wet and muddy

training hike. It was actually longer and harder than the hike in the

Grand Canyon. The team leaders hung back with Jan who was slowest.

When we were about a half mile from the end and the hike leveled out,

Jan broke into a jog. I think of that whole experience as " sensitivity

training " for the Leukemia Society. Someday soon, we will go back and

do another hike with them. As a leukemia survivor, I feel she owes it

to help raise money for research. Besides, it was a great experience

for all.

Rick

p.s. I don't think it matters if you tell them your child has DS. It is

whether they accept your child as she is into a program which doesn't

have any other special needs kids but which accepts her as a participant

without fuss.