Inclusion, "Dead End Programs" and Multiple Perspectives

It's been weighing on me since I first read it a couple days ago, Lisa Rudy's post "Dead End Programs for Children with Autism." Rudy begins "These days, there are quite a few community program available for children, teens and families with autism.  Most are not true "inclusion" programs; they are, instead, 'autism only' programs intended to provide entry-level access to everything from sports to art to movie theaters."

Rudy and I live a couple thousand miles apart, in vastly different worlds. Where I live there aren't quite a few programs for people with autism. There aren't sports teams for autistic kids here. There aren't any "autism only" programs. Do I think there should be? No. Not autism only. We do have some programs for the mentally and physically disabled, though, for which I will always be grateful, as the adaptive recreation center my son attends has given him a place to thrive, to have friends, to be of service and to feel valued. 

Rudy's push in the piece is that there should be transition programs so autistic children with specific talents can move into regular, inclusion teams and that if there aren't, then these programs are dead ends, and therefore somehow bad.

My comment over there stated well my initial reaction to Rudy's piece:

My son attends a recreation center for the disabled. I guess, by your criteria, it is a dead end program. I don’t look at it that way, and I dare say that few of the participants look at it that way, either. It’s a full time year round program that provides classes and recreational activities for a very small fee each month.

They go on weekly field trips to local stores and restaurants; they participate in special Olympics events that they train for year round. It is where my son will most likely spend the rest of his life, at least as long as the program is available. Indeed, two of the participants have attended it since it began over thirty years ago. One participant at a concert that they put on last year spoke about how important it was for her because no one looked at her funny, treated her mean; there she was free to be herself.
Where our children can take their place in an inclusive society and fend for themselves, great and awesome. We’ve got a ways to go to making society receptive to those it considers different and less than. My son can’t do that fending for himself and needs a safer, supervised environment. I’m grateful there’s one there for him.

Interestingly, this got no reaction from Rudy, so perhaps she doesn't mean the severely disabled? I don't know. The comments in the piece were interesting, but frustrating, at times. It was nice to see that Twyla, who is ideologically opposite of me, actually has the same position on "inclusion" that I do. In a follow up post by Rudy, where she professed her surprise that people didn't agree with her on inclusion mattering (that's a bit of a stretch, though), Twyla commented:  "I think inclusion is extremely important. But I also think that programs tailored to people with special needs are also extremely important. I felt that describing joyful, enriching special programs as a “dead end” was unnecessarily perjorative [sic]."

And that does seem to be part of the point, one that Rudy didn't seem to quite understand. Either that or Rudy's defining inclusion and community differently. My son is a part of the community; he volunteers at the local animal shelter, but on a day and time where he is sheltered because dealing with the public coming into the shelter or a large group of volunteers would tax his ability to function. It's difficult enough for him to interact with the few regular employees, even after a year. Rudy's idea of inclusion in community would seem to suggest that unless he did it at the busiest hour with the most people, he hasn't been included in community. Narrow definitions of inclusion and community don't work.

Another area of community inclusion that Bobby has are the Special Olympics, which are important to Bobby, and he trains most of the year in the three events he routinely participates in. He's thrilled with it. The days of the competitions, spaced one each  quarter, participants come from around the Big Country and it's an all day affair, and a joyous event, and because there are volunteers from the community helping bring about the event, it is absolutely inclusion in the community.

These two posts by Rudy, along with some of the comments, really struck me. I don't want to say they irritated me, as that's not quite right. I'm not mad or annoyed, but perplexed.  

It may be that Rudy's posts were inspired by frustration over trying to help her son find a place in the mainstream world with his peers, and the accompanying belief that all parents, indeed all people, would want that inclusion. Since we are none of us, and that includes our children or the autistic adults in our community, the same person, we each approach the idea of community and inclusion from different perspectives and obviously with different definitions. 

My son's day center may be a "dead end" to Rudy because it won't somehow magically transfer him into normality and her idea of community inclusion. To me, though, it embodies community inclusion. The participants range in age from the teens to their late 60s (and perhaps older); the senior citizen recreation center next door prepares the hot meals that the participants at the day center eat. There are volunteers from the community at all the Special Olympics events, and the city firefighters are there, too, watching and handing out the medals to the participants. 

The reality is that community  is something we will all define differently, as is inclusion. My son is happy, he is fully included in his community, and his community intersects with the broader community on a regular basis. It is anything but a dead end program, even though he will not age out of it. I, for one, am grateful that it is a community that will be there for him as he ages, that the city has demonstrated a commitment to provide this program for those who would otherwise be relegated to the isolation of their own homes or at group homes. The city has promoted a wonderful community for my son and his friends. 

Remembering that we are individuals who are unique, with our own desires and levels of comfort for community inclusion, is paramount.  Expecting that everyone will agree with us and our definitions is bound to lead to disappointment, and one could argue that it leads away from community inclusion. 

I'd also argue that expecting every competitive activity to have in place transition programs for autistic individuals alone is, at best, unnecessary (and unreasonably narrow; there are other special needs groups, and it's self-absorbed to think that autism is somehow more deserving or more needy). 

Not everyone is going to be able to compete for placement on a team, and it's unrealistic and unreasonable to expect the organizing body of whatever event or team sport to fund such a transition program. Sometimes, it's our job as a parent to be that 'transition program' for our children. That's parenting. If it's important to our child to participate in a competitive event in an inclusion setting and it's important to us, then we'll do the work to help the child succeed. If our child just wants to play, then we'll find a setting that allows the play without the competition.


farmwifetwo said...

One day we're going to have a PM discussion on this subject... farm books first...

But, yes, there are some "disabled" programs here... even in "no man's land" :) along the lines of the one your son attends. For children's programs they don't exist. Luckily, they will take my children in every program with the appropriate supports if they cannot manage (there is funding for this available to us) or in a regular program if they can cope. We've never been turned down, but we've also never bullied our way in and accommodated us and them.

There are programs just for children with autism an hour away in the city. There is a soccer league just for them. I'd love to send the youngest... it is for the severely disabled... but for now it's too far. There is a summer camp starting at the summer after Gr 8... mild to severe... no support workers required, they supply them.

None of this is "dead end". A year ago I would never have agreed to a self contained classroom for my youngest - until it all went to sh****. I put him in it so he wasn't segregated any longer. So he now has friends. He now has the opportunity to speak and be heard. Ironically, since he can read at grade level and they can't, he is teaching them to read, they are teaching him to talk. He has 4 "normal" friends that come and fetch him at recess time - HE made them himself, they were not "assigned" to him. They don't care that he has an EA outside with him - runner - nor that he doesn't speak well. They play bleyblades in the cleared off sections off the playground. He will never be "normal", he will always continue to require support of some form... but isolation can occur just as easy when you are integrated and IMO at times even moreso.

One day we need to have a chat on homeschool materials. Right now... back to work.

Unknown said...

I often notice the difference between the experiences of parents with "mildly affected" PDD-NOS / Asperger's Syndrome and those with more affected children.

If your child is in a "grade-level" high school class, or even advanced courses, and participates in band or other activities, that is not the same experience as the parent of a child who will never attend a university or live independently.

One of the reasons I dislike this entire "spectrum" thing is that parents of the severely disabled have needs far more complex, expensive, and demanding than the parents of minimally challenged children. They simply cannot be compared -- and I say that as someone who has overcome physical and neurological challenges. I know my parents had a different experience than most parents. Trips to surgeons, back brace fittings, neurological tests, and so on, are different than "only" having to help your child "fit in" socially.

I don't mean to minimize the experiences of PDD-NOS, AS, ADHD, etc, families, but ADHD doesn't destroy family finances (normally). AS doesn't (normally) involve broken bones and serious injuries from self-injurious behaviors.

You cannot place a self-injurious, non-verbal child with agressive tendencies in most mainstream activities. My mother works as a one-on-one aide in a small classroom. The children could not be included in many things, for their own safety and that of others. The need a professional at all times. Activities for them have to be specialized.

That's not a "dead-end" to have special events and activities. It is meaningful inclusion for those families and children, within the limits of what can be done.

farmwifetwo said...

C.S. as a parent that has one child with NLD (11) and one with severe/moderate ASD (9) I fully agree. The elder can and does attend any and all programs that he may wish to try. Saying that he is missing what I like to call "the I give a shit gene". He doesn't perfect something, doesn't improve on a skill. If he can do a kata in Karate that's good enough... He doesn't understand why he has to practice and practice. It's an issue that I have no idea how to address. We finally had to take him out of karate last spring b/c he was getting frustrated and wasn't moving up in belts - was one below green - and didn't understand why.

On the other hand the younger would never manage a karate class. The sensory stimulation alone would be overwhelming. Could he learn karate - yes but there are other extenuating concerns whereas a "disability" program would take sensory and other issues into account when teaching these kids. This is why he's been in private swimming lessons this school year unlike the group ones last year. He loved the pool, he just could not hear with all the noise.

Also, he is low behavioural. Why would I want him in with children with behaviour problems just b/c they have the same dx on paper??

Specialized programs/different levels of proficiency, are nothing new even for "normal" children. Why should there not be divisions for those with disabilities as well?

Joeymom said...

I wish all three types of programs were in place everywhere. I wish that there were appropriate environments and programs for everyone, to be the best they can be and in the community as much as they can be, so everyone can feel wanted, valued, and valuable. Alas, this is not the case. Some places are very good at programs for "severely disabled" people, making sure they have sheltered environments and plenty of supports to help them be as independent as possible. Some places are good at moderate programs that provide specialized environments and moderate supports. Some are excellent at serving people who just need a little support to get them into their communities in non-sheltered environments and full integration into non-disabled society (well, as much as there is such a thing. Is there such a thing?). No place seems to be good at serving the whole spectrum of needs, so someone always is left to fend for themselves and feel ostracized or "dead ended."

I know exactly what a "dead end" program means. It is a program that is designed for a service level higher than you want or need, but the alternative is being just tossed in with non-disabled peers with no support at all. Some people don't need sheltered environments, and leaving them in sheltered environments doesn't allow them to excel and be the best they can be, or do things they may want and be able to do. Or there are programs that seem to offer supports, but don't offer the appropriate supports, and thus the individual fails in the program, which can lead to depression.

When we can get folks to really understand what is meant by "individualized" and get people the support they need in the environment appropriate for them, I think we'll all be surprised how much better society as a whole can be. When everyone can contribute their talents while facing their challenges, everyone wins.

For now, I am glad Joey can be in Challenger's baseball, but remain frustrated that they have so screwed up his school environment that he is no longer in a "mainstream" classroom for math or reading, where he really does well with his non-disabled peers. I wish we had more supports in the community for transitioning kids with disabilities into the community at appropriate pace and levels so that everyone gets to contribute. And I know full well what is appropriate for my Joey is likely not to be appropriate for any of the other special needs kids I know. He is, after all, an individual human being. If we just treated everybody else as individual human beings, imagine what we could do and be!

Anonymous said...

Wow, those were quite the discussions over there. I'm not even going to attempt to jump in.

I think real community inclusion only comes when the capacity is built for it. Just saying someone with a disability can come isn't enough.

And often capacity-building only happens when the parents do the work, so it comes down to the parent's ability to educate and inspire people to make changes.

It also depends on the individual's ability level and desire to be involved in the activity.

For my son, both special needs soccer and baseball were nightmares because he can't handle the demands of team sports, both in terms of attention switching and competition, even though the people involved are amazing. But a regular swimming class varied in how well he did based on which instructor he had, as one was very good with him and the other wasn't.

School is a whole other story. At least in the US, schools are supposed to be supporting goals and accommodations for extracurricular and recreational activities, but too often only do it with prolonged, intense pressure from the parents (and sometimes not even then).

Kim Wombles said...

Farmwifetwo, hope you're getting caught up with the work. :)

Programs are so drastically different from country to country, region to region, and from school to school. Consistency would be nice, but we don't even have that in the general classrooms.

FW2, C. S.,Joeymom, aspergirlmaybe, you all make such good points. Thanks for commenting.

I felt that a large part of the spectrum was missing from the conversation over at About.com.

D.J.Kirkby said...

My number 3 son doesn't like competitive sports and gets quite distressed when expected to join in but he does love horse riding and makes good use of the disabled ridiing therapy centre about an hour away. It's a shame it costs so much though!

Lisa Jo Rudy said...

It sounds to me like we are all on very much the same page: we would like our kids with autism to participate and achieve to their level of comfort and ability.

I'm sorry if I was difficult to understand. My point is this: participation and inclusion may appropriately start and finish with autism-only programs. But when an autism-only program is wholly segregated, and provides no chance of full inclusion, it is creating a dead end for those children who gain from it and could do more.

I was really responding to a music program that teaches kids to play instruments, offers autism-only recitals, and has absolutely no relationship to any mainstream music - period. Thus, if a child does well with their music and is ready to progress, there is no thought given to how that could possibly happen. The response I was given when I asked was "why would we get involved with that? We're running an autism program!"

Perhaps the assumption is "if they're good enough, they can just go join a band." But as any parent of a child with autism knows, it just ain't that simple!