Friday, May 20, 2011

Inclusion -- or else!

Months ago I wrote to a BLOOM reader who has a daughter reaching adulthood. I had just done an interview with filmmaker Dan Habib about inclusion and felt horribly guilty that Ben was in a segregated school.

“Ah yes,” the mom responded. “The inclusion – or else – debate!”

Now Dan never made me feel judged because my son isn't integrated. He understands the barriers. But too often I find people who promote inclusion have zero tolerance for anything less than 100 per cent.

Last night, Ellen at Love that Max posted about how one of her readers was challenging her to send her son to a regular overnight camp – vs. the special-needs sleepover camp she had planned. "I wouldn't nag if I didn't think you had it in you to challenge your own thinking and be open to a different path for Max," this reader wrote.

My own experience is that families whose children are not in regular classrooms or camps have made this decision not because they have an attitude-problem -- or are close-minded, as Ellen's reader suggests -- but because they simply can't find a regular class or camp that is resourced to support the complex needs of their child.

In other words, the town, city or country they live in is not as far enough along in investing in well-supported, inclusive environments.

Sometimes we families may choose inclusion anyway -- even when it comes at a cost.

For most of elementary school, Ben went to an alternative school for typical kids precisely because I wanted him included. On the plus side, he made some authentic friends and was relatively well accepted. On the negative side, although he had an EA, the school didn’t offer any special-ed or sign-language support, the building was an acoustic nightmare for a child with hearing loss, and he didn’t get the structured learning environment he needed.

I’m grateful he had that time in a typical environment, but I can’t say that the friendships he had there lasted. I’m sure some inclusion experts would say that’s because I didn’t try hard enough to maintain them – perhaps by setting up a formal friend circle or being more proactive in keeping in touch when he left the school.

We did make efforts, but because my son can’t pick up the phone to talk to someone, or easily e-mail, it was hard to keep in touch when we didn’t see each other through school.

What I believe was Ben’s best year of education happened in Grade 8, when he went to the Metro Toronto School for the Deaf. The contained program was part of a larger regular school, and in addition to the students in his class, Ben got to know some of the kids who took the bus with him.

The class was small and combined speech and sign language. The teacher had high expectations and knew how to teach kids with hearing loss or learning problems. The other students were mainly ‘regular’ kids who were deaf. The teacher promoted a very inclusionary environment where students looked out for each other.

Unfortunately, Ben aged out of that program after one year. In the Toronto board, students with complex needs are taught in contained classes at high school, not included in regular classes. We were given the option of a segregated school for students with mild intellectual disability – in a deaf/hard of hearing class – or a contained class in a regular high school for kids with developmental disability. The latter was in the basement, no windows, and most of the kids didn’t use sign language.

Ben spent three years at the separate school, and this year we decided to look at other options when we realized his program was almost entirely life skills.

I’m going to visit some MID classes in the Toronto board, and am also meeting with the Catholic board. But there are few options that meet his multiple and complicated needs – and none are based on inclusion in the regular class. I’ve been told the Catholic board doesn’t have an MID class that uses sign language, and that their deaf/hard of hearing classes are segregated. And I assume theirs are the same as the Toronto high school classes, where the students sign but don’t speak.

Ben needs to be in an environment with speech and sign, with primarily one-on-one teaching, and where he is physically safe: he has severe short stature, bone problems, is weak and can’t walk for any distance.

I will visit a number of programs and check out our home high school. But as much as I would like to have him in some way included with typical students, I have not seen a regular high school class that is resourced to support children with complex, multiple needs in Toronto.

Perhaps someone reading this will enlighten us – I’m happy to add another program to my list.

I know that from a legal perspective, I could show up with Ben on our home school's doorstep and demand they take him. But at what cost? Him having only one person -- maybe an EA -- who understands his sign language? Tiny Ben, with bones as fragile as an elderly person's, being knocked over by regular, strapping 17-year-olds? And at our home school they will not put him in a regular class anyway. He will be put in a contained class.

I believe that inclusion in all parts of society is where we need to go.

But sometimes, I find myself caught between a rock and a hard place in terms of what is available – at least in the school system – and what inclusion advocates say is “right.” Too often, as a parent, I feel judged.


I understand the inclusion thing...but those who are so pushy about it usually have very high funtionning kids and have no clue what it's like to have kids with more serious challenges. Sophie was in a full inclusion program for several years but it fell badly apart in grade 8 when her needs became more intense. High school full-inclusion is an unmitigated DISASTER. have to find some middle ground and the ideologues are no fun to have around.

All in all, I think people mean well. I've said it before and I'll say it again and again and again. Go with your gut. If mothers would just go with their instincts, make a decision and then stop second guessing themselves, the journey would be a lot less stressful. Believe me. I've learned the hard way.

Just as a clarifier - as Ellen's "reader" my comment was in no way implying she was 'close-minded' in fact it was just the opposite - since it was just one tweet within a bigger convo between us in blocks of '140 characters' its perhaps been taken it slightly out of context.

Always I think parents need to go with their gut - but not without looking and thinking about all options and at times challenge or rethink the status quo.

Our little boy has multiple, severe disabilities - described by the state ed dept as the "most disabled ever" - we essentially use the school system to help change attitudinal, societal and community beliefs around someone like him. It is the only way we can see him get a life after school that doesn't involve 50 years of day programs.

He essentially chose the environment having been in a segregated Early Intervention program which he hated - he challenged our thinking, we listened.

My kids who had physical disabilities (CP, spina bifida, and dwarfism) but were capable of doing academics close to or at grade level, were totally mainstreamed. Now, when my daughter, who has very severe CP, was approaching kindergarten age, the district tested her and the diagnostician was telling me how great she had done. I said, "Well, good, then you'll understand why I want her in regular class next year." This was 22 years ago, and our district had never mainstreamed a student that severely disabled. She was mainstreamed, with an aide to assist her, her entire school career, and now lives on her own in an apartment.

But my two boys who were not capable of doing academics and who had behavior problems spent most of their school years in self-contained classes. I made the mistake of pushing for mainstreaming Marcus in kindergarten and first, and it was a disaster.

I think people who are so adamant about mainstreaming don't give any thought to those costs. When I worked in schools as an OT, I would go get a student out of a mainstream social studies class, and would find him sitting in his desk, scribbling on a piece of paper, while the other students worked and discussed a topic that he could not understand, even if he were paying attention. All I could think was that he could actually be learning something if he were in his self-contained class.

Thanks everyone for your comments.

Gina -- I'm so glad you stopped by BLOOM. I checked out your blog Inky Ed and it's beautiful.

From reading just a few posts, it sounds to me like mainstream school has been such a success for your boy because he's extremely intelligent and communicates very well with his voice device.

That means he can learn the way other kids do, and at their pace, and they can truly get to know him as a person because he can express his thoughts, personality and humour through his voice device.

I think the real challenge is when a child has significant physical and cognitive disability, and doesn't have a reliable communication system. I think for inclusion to have any chance, then, you have to have a different level of commitment to/investment of resources in the class, and very innovative teaching practices, or the child can't learn, can't participate, and the other kids can't really get to "know" him. He may be sitting in the class, but he's sidelined and not one of the group.

I know there are pockets in the US where they've done studies on how to support children with the most complex, including intellectual, disabilities in regular classrooms. But I think that calls for very intensive resources. How do you make learning accessible and inclusive to high school students in the 90th percentile and the 1st percentile? You can't simply teach using the same old methods.

There is more of an openness here in Toronto to include kids when they're young (often without adequate resources).

But when they get to high school, they don't even pretend that that kind of inclusion exists for students with complex intellectual and physical disability -- who may also have high anxiety and behaviour issues if they can't communicate.

We would LOVE to change attitudes about our son with disabilities. But he wouldn't be "seen" in a regular high school class because he can't communicate and express his thoughts and personality. We don't have the commitment to 'unlocking' kids like him in the mainstream.

Maybe you could write a guest blog for us about how your son uses his voice device -- because it sounds like he is able to express himself very fully and eloquently.

I hope you come back and share more! Louise

Louise, will pop back in touch when the crazy life chills out a little. I am running on empty at the moment after being away and having a lurgy i just can't shake but will put my mind to outlining Mac's communication etc.

I've been shocked by how off base you are on your assessment of Gina but also knowing her, she wouldn't see this as criticism - more an opportunity to educate.

You are also completely off base on your assessment of services and assistance/education in Oz. We don't even have legislation to prevent discrimination in schools or the community. Given all this, what Gina has achieved is amazing and I am in awe of her every time I read her blog.

I hope Gina takes you up on the guest post offer.

Hi Jacqui -- Thanks for visiting BLOOM!

I don't know anything about services in Australia (I don't think I suggested I did).

I'm in no way minimizing what Gina has accomplished for her son. I encourage our readers to check out her blog at:

The point of my post was to say that many parents have wanted to choose that different path for their child, but often haven't been successful -- despite great efforts -- because their child has complex physical, intellectual and communication disabilities and adequate supports aren't in place.

I would love Gina to guest blog for us.

I'm a bit taken aback by the vociferousness of those on the "inclusion or else" side of the debate! We're all just doing what we think is best for our child. (See my latest blog post if you're interested on my take, as an "old-timer.")

I've been reading a lot about inclusion v mainstreamed v contained. and I really just wanted to say thanks for thanks for talking about it. I pretty much thought my kid would for sure need a contained classroom but hearing all the conversations (a program for the deaf - woudln't have thought of that but maybe that's an option for my non verbal, signing kid) has just opened my eyes to other options. and really that's what it should come down to.. research and find what you think is the best fit for your kid. although that sounds a lot easier then it is. Thank you!!

I have a 15 year old son in his second year of high school. He has been diagnosied with an intellectual disability. He is very social, verbal, loves to dance, sing, play the drums, participate in sports, has a big personality and loves to tell stories. He has been integrated up until high school at which time, someone convinced me that the best path for him was to go into a center based, segregated program. He was devestated the first several months as he did not see himself as having "special needs" and did not understand why he was in this type of classroom. He has adapted for the most part, but says he is bored and it does not seem that he is challenged much. He is in a "life skills" program. His IEP is very general and has no concrete goals that are measurable. He longs to be in the "mainstream" school. Last night I talked with a Special Needs professor who felt strongly that I should pull him out and integrate him. How do I know what is best? His reading and writing skills have regressed. I was told that he might be able to be partially integrated some day if he progresses, but as I said, he is seemingly regressing. This prof says that all the recent literature/studies suggest that kids fair best long term, beyond high school if they are integrated, because that is closer to "real life".

Hello Anonymous -- thanks for writing.

It sounds like your son has many strengths and could be included in a mainstream setting.

We have had a wonderful experience with our son -- who was in a segregated school -- being transferred to a regular high school. He is in the deaf/hh unit there, so it isn't full immersion, but he is thriving there in comparison to his experience in the segregated school.

Particularly if your son wants to be in a regular high school, I would purse your options. Where do you live?

Best wishes! Louise