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.