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.

Forever Young...a blessing for my family

I just finished a little project I've been wanting to put together: a slide show of my family, to Bob Dylan's "Forever Young." I love this song...it's such a powerful blessing to bestow on anyone. So I've been going through my huge box of photos that never got put in albums. It was hard to narrow down the selection and laborious to scan them at Walgreens.

I have to admit it was a bittersweet experience to go through all these pictures. After all the severe behavioral and emotional problems many of the kids had during their teen years, and which many continue to have in young adulthood, sometimes it's hard to remember all the good times. But the pictures don't lie...there were moments of great joy, adventure, fun, and love. I was determined that all my kids, despite their disabilities, would have a normal childhood, including not only the fun parts, but the responsibilities, too.

Five of my children no longer keep in touch with me. I've tried to include at least one picture of each kiddo, but my focus was on the ones who remain part of our family life...the ones who learned some of the values expressed in the song.

Craving conversation

Human speech is like a cracked kettle on which we tap crude rhythms for bears to dance to, while we long to make music that will melt the stars. Gustave Flaubert

There are times when I would give anything for a normal, free-flowing conversation. I spend most of my time with my family members who have some type of language disorder.

There's Marcus, who suffered a severe traumatic brain injury at the age of 2. The left hemisphere of his brain was so damaged that now, according to his last CAT scan, there is very little brain tissue left on that side and it has been replaced by cerebrospinal fluid. So I guess it's a testament to the plasticity of a young brain that his right hemisphere took over the language responsibilities. He is able to understand a great deal of what he hears on the news, especially with the extra visual input of the video, and sometimes he surprises me by some fairly sophisticated vocabulary he uses. But his ability to pronounce words is impaired, as is his grammar. He has difficulty with memory and often fails to understand something simple I'm trying to tell him. He also has a habit of using a very repetitive, circular type of conversation, in which he basically says the same thing in about a dozen slightly different ways...a habit that really tests my patience at times.

Gabriel, as I have mentioned before, tends to obsess on certain topics like the Mafia, the Queen of England, rappers and gangsters, etc. His hebephrenic schizophrenia also causes him to be on the silly side, so he'll make really silly jokes over and over again. For example, he says, "Coolie (the dog) was making gang signs," and he thinks this is hilarious. He jumps from topic to topic, in a schizophrenic stream of consciousness. His memory skills are very poor, so he asks the same questions he asked yesterday, or even earlier in the day, because he has literally forgotten the answer or that he even asked the question before. I try to engage him in more normal conversation, but often my efforts are met with a total lack of affect and/or interest. When he's quoting someone, for some reason he assumes a very high pitched voice, and has taken to flapping his hands when he's talking as well.

Tevis, who spends most weekends with us, is a different challenge. He has the WORST stutter/disfluency I've ever heard, repeating the beginning sound or word or phrase up to a dozen times. He has a certain amount of apraxia and a very nasal quality to his speech, so he is pretty hard for most strangers to understand. He also asks questions repetitively, ones he has asked a hundred times and knows the answers to. (I personally think special education teachers inadvertently reinforce this, as they are constantly asking their students questions to test their skills and knowledge, rather than simply conversing with them.) And he thinks he has to be talking about 55 minutes out of every 60! But, to Tevis' credit, although he has a measured IQ of about 40, he has a lot of common sense, is very observant, is tuned into other people's feelings, and has picked up a lot of information he's heard. For example, when I told him that we might move to St. Louis, and they have more snow up there. "You need to get a car with 4 wheel drive, in case we get stuck in the snow," he opined. In some ways, he's more functional than Gabriel, which makes me very sad.

And then there's my mother. I remember the days, when the kids were young, that I used to call her every day, just to talk, blow off steam, get advice. As she got older and a little more cranky, I called less often, as I wanted to avoid her complaints. What wouldn't I give now to have a normal conversation with her, complaints and all? Her stroke last year left her with Wernicke's Aphasia. She understands what is said to her, and knows what she wants to say, but much of what she says comes out as gobbledy-gook or the Jabberwocky of Lewis Carroll. I call her and ask how she's doing. She can now answer automatically, "Oh, pretty good." But then she continues, "I was just lasting here frankly on the clasp. The man was spelling the sepler today, and it was something, but we got it done." Somehow I understand that she is sitting on the couch and that her personal care aide came and did the laundry, which there was a lot of. I often think of that scene in "Saving Private Ryan," in which the young medic, sitting in a darkened, deserted ruin of a church, talked about how his mother would come home from the late shift and would want to talk with him. "She'd stand in the doorway looking at me... and I'd just keep my eyes shut. And I knew she just wanted to find out about my day - that she came home early... just to talk to me. And I still wouldn't move... I'd still pretend to just be asleep. I don't know why I did that," the young soldier says quietly, with pain and regret in his voice.

Even when my other kids lived at home, it wasn't any better. I had the "cocktail party" speech that is a feature of Non-verbal Learning Disability and hydrocephalus/spina bifida. I listened to the circular reasoning of Fetal Alcohol Effect. I tried to tune out the insults of a sociopath. I was bombarded with the emotional abuse and the narcissistic monologues of a borderline personality. And I had to use intense concentration to understand the language of severe spastic/athetoid cerebral palsy.

When I was working, I used to have the opportunity for normal conversation sometimes. Now, I didn't get much of that from my co-workers; the "Me-generation" doesn't engage in much give-and-take with anyone twice their age, it seems. I did enjoy conversation with some of the parents of my patients, especially those who were closer to my age. But we were under instruction from the agency to refrain from conversation about our personal lives, so I felt some restraint in my interactions. Some parents....well, let's just say there wasn't much to talk about with them, like the mother who complained when I dared to take a whole week off when my dad died. But now that I'm not working, my interaction with others outside my family has been limited. OK, I admit it, I'm something of a hermit, though not entiredly by choice!

To my readers who have children who are non-verbal, you might be thinking, "What is she belly-aching about? At least her kids are able to talk!" I know that I am very lucky that all of my children, even the ones who have very significant disabilities, are verbal. It's just that sometimes a little normal conversation would "melt the stars."

What an inspiration!

I was watching CNN while ago and they happened to have a story about a camp in Georgia for kids with Tourette Syndrome. The driving force behind the camp was a man named Brad Cohen, who has TS himself. I googled his name and discovered that he is an award-winning elementary teacher who has written a book about his experiences growing up with TS and becoming "the teacher I never had." On his website he has the video of his appearance on Oprah. I was so moved by his story, and especially the video of the kids in his class and school at the end.

May all of our children be lucky enough to have at least one teacher like Mr. Cohen in their lives!

Links to my Helium articles

I am still off of work on short-term disability due to my back problems. So I've had a lot of time to pursue some of my interests, including writing on the Helium website. I hadn't been active on the site for some time, so, alas, a lot of my articles lost ground in the rankings due to my inactivity. I thought I'd post links to a couple of my pieces that pertain to disabilities, as they might be of interest to some of my readers here.

Parenting a handicapped child (for those who prefer "people first" language, keep in mind that on this site, the title is already chosen for the suggested topic!)

Autism: Why and how to treat toe-walking

And, by the way, I earn a small pittance when people link in.