Sunday, May 22, 2011

The inclusion debate

Daughter Leslie, second from right, was one of the original students at Alice Carlson  ALC.
I read several blogs of parents who write about parenting their kids who have disabilities.  Most of these parents have kids much younger than my own.  I occasionally comment on their posts, hoping that hearing from a parent of "kids" who are now adults, might offer a different perspective.  Occasionally I feel slightly miffed that my comments seem largely ignored, as if they are relics from the Stone Age, but I take a breath and tell myself that I'm being too sensitive, and remind myself that they are discovering something new…something that’s new for them. And it’s in the discovery that it becomes real for them.

But in recent days, a debate has been going on on Ellen's blog and Louise's blog regarding inclusion.  I admit that I have been taken aback by the vociferous tone of the debate, especially on the part of those who are adamant that their child (and everyone else's apparently) must be included in all aspects of normal life and should never be "relegated" to the ghetto of activities organized only for special needs kids.  I also feel that there is a certain amount of disdain for those of us who have chosen segregated or specialized programs of any type for our kids with disabilities and for those of us who pushed for the elimination of barriers before many of these parents were even born.  In a way, it reminds me of the disdain that Black Power groups had for the pioneers of the civil rights movement, regarding them as "Uncle Toms" and sellouts.

With so many kids, who had a wide variety of abilities and disabilities, I've had lots of experience with specialized programs and with inclusion.  My kids who were capable of doing academic work at or close to grade level were all educated in regular classrooms.  That includes my daughter Leslie, whose cerebral palsy is so severe that she cannot even feed herself.  When she was approaching kindergarten age, the diagnostician at her school tested her, and sought me out to tell me that Leslie had scored at or above her age level in all pre-academic areas.  "Good, " I said, "then you'll understand why I want her in regular class next year."  The poor woman looked shocked; our district had never mainstreamed a child with such severe disabilities before.  But it was all worked out, and Leslie went through school in regular classes, with an aide to assist her, and she now lives in her own apartment.

But I recognize that there are kids who don't do well in mainstream classes.  I pushed for Marcus to be in regular class in kindergarten and first, and it did not work out well.  In fact, school itself did not work out well, increasing his PTSD to the point that he started running away from school.  I took him out of school during middle school and his PTSD was totally resolved.  When he returned to school for high school, at first he was in his neighborhood school, in generic special education classes that were abysmal.  Goaded by other students, who asked him things like,  "Do you f*** your white mother?," his explosive behaviors  returned.  I then asked that he be placed in a pre-vocational special education program, where he made friends, was able to move to a sheltered workshop at the Lighthouse for the Blind, and was described by his teacher as so responsible that he was like her assistant.

Outside of school, my kids participated in both types of activities.  All went to vacation church school and regular after school day care.  Some went to regular summer enrichment classes, day camps, and church camp in Colorado.  But most also went to camps for kids with disabilities, sports programs sponsored by United Cerebral Palsy, and adaptive horseback riding.  In some of the regular programs, my children got hurt.  At day camp Leslie's seatbelt wasn't fastened and she fell out of her wheelchair and broke her collarbone.  At day care, Marcus got a corneal abrasion when another child accidentally scratched his eye.  I'm sure Marcus didn't make many friends at church camp in Colorado, because no one helped him locate the showers, and he stank to high heaven when he got back home.  One time I helped with Gabriel's Campfire group, and it hurt me so deeply to see how the others ridiculed him.  One advocate of inclusion just signs her kid up for t-ball and any other activity she chooses, because it's his "right," and I guess she just expects the staff to step up to the plate, so to speak.  That, in my opinion, is the path to possible disaster.  Aside from the safety factor, one has to acknowledge that it takes leadership from the staff to make inclusion work, and, if the staff is ill-prepared or fearful, they will not have the necessary skills and commitment to figure out how to meet the disabled child's needs in the group.

Lastly, I know that special needs parenting has its ups and downs and frustrations.  Everyone wants their child to have every possible opportunity and chafes at limitations.  We still have a long way to go to achieve a society without barriers, especially to employment.  But it's always a good idea to reflect on the progress we've made.  When I first got involved in working with the disabled, doctors still advised parents to place their children in dreary state institutions.  When I was rearing my children, I had to carry my daughter into restrooms because her wheelchair wouldn't fit, and I must have bumped Leslie and Cedric up and down about 10,000 steps in their chairs because there were no ramps.  Of course, we should not rest on our laurels, but today's parents should acknowledge those who paved the way, instead of denigrating their efforts because they "settled" for less than full inclusion.


BLOOM - Parenting Kids With Disabilities said...

Thanks for sharing your many years of experience with many children!

I've encouraged BLOOM readers to take a look. Cheers, Louise

Galen said...

Thanks, Louise! And thank you for providing so many thoughtful, thought-provoking posts on BLOOM! I've learned so much from your blog.

Ellen said...

Galen, I can't even tell you how glad I am to see a comment from you on the blog. Stone Age? Um, no. You are one of THE best voices of wisdom.

I agree that in the end, raising a kid with special needs means a mix of activities, both inclusionary ones and special-needs-only ones. We just haven't done much with the former, and I think it would be a good thing.

Galen said...

Hi, Ellen, thanks for visiting my blog. As I said, I remind myself that I may be overly sensitive at times. But the discussion really did get my dander up a bit. Those who are so adamant that inclusion is the only way sometimes seem to imply that (1) believing in total inclusion is a higher form of consciousness and those poor souls who are still involved in special needs programs have not yet found enlightenment, and (2) the unenlightened ones should feel guilty for not demanding inclusion. I know that we all know our kids the best and do what we feel is the best for them as individuals. Good luck with camping, whatever you my kids, camp was the high point of every summer!

Rickie, Domestic Goddess said...

This was a very interesting blog, Galen. Although I don't have any children with disabilities, I've always thought that mainstreaming these children should be on an individual basis. I think so many disabled children will do well in a neighborhood public school and if so, it will be better for both the disabled children and the so-called "normal" children to be friends with each other.

I do believe there are instances in which this is not a good idea, such as your son's who was not a good fit and did better in programs that could help him become the best he can be. I believe the parents who push for this are not always doing their children a service...sometimes I think it is because they so desperately want their children to have no disabilities that they don't really stop to ask themselves if they could make their children's school experience a wonderful one for their children.

I wish all children could go to the same school, but it is not a good idea, say if a child is extremely disruptive to the class (be it from a disability or simply a behavioral problem).

God Bless You and all you have done with your children. I admire you and your heart.


Galen said...

Hi, Rickie, I'm glad you like the blog post. I think that some people automatically assume that inclusion is always the goal, even if that is not what is best for the child. When I worked in the schools, I would go to get a student from his mainstream class for therapy. It was a fourth grade social studies class, and while the rest of the class was discussing something like the geography of Texas or working on map skills, my little student was sitting at his desk scribbling on a piece of paper. Every time I thought how much better it would be if he were in his special education class, working on reading skills or learning the difference between a city and a state and which state he lives in or learning his address and phone number. Some would argue that he was improving his social skills, but he wasn't even paying attention to the rest of the students (unless they misbehaved), and they basically ignored him except when they were teasing him. And yet the powers that be assume that this was the desired goal, because he was mainstreamed.

gillian said...

I am preparing to post on this on my blog next week.

I love your balanced approach and I pay heed to your years of experience. Thanks so much!

Stacie said...

I hear you:-) and fully agree with your viewpoint and thoughts on inclusion. I've felt just like you when talking to other parents and I know my own efforts have contributed to changes for the better. There is a strange disconnect between special needs parents, advice from those who have been there is largely ignored... maybe it's kind of like grandma sharing her baby care experience with a new mom determined she knows the best way already (sometimes ways have changed and sometimes new mom is dreadfully mistaken). My son would gain nothing in being part of a regular classroom. Thank you for sharing.