Monday, August 20, 2012

The realities of inclusion and kids with special needs

Here's a happy sight: this girl in a wheelchair in the Girl Scouts fall 2012 catalog. 

The catalog also features this girl with Down syndrome.

I get all giddy when I see kids or teens with special needs featured in magazines and catalogs (as happened recently with baby Valentina, who ended up on the cover of People magazine). I'm also filled with greed: I want more, more, more. But inclusion in a catalog is one thing; inclusion in real life is another.  

Shortly after a reader shared the above (thanks, Faye) I read that an Illinois family is suing the Girl Scouts for excluding their daughter due to disability. Megan Runnion, 12, who is deaf, had a sign-language interpreter at meetings and troop outings. Earlier in the year, her Chicago-area troop was disbanded—allegedly since Girl Scout officials were limiting the group's activities because of the cost of the interpreter. Her mother, Edie Runnion, says she was later told the Girl Scouts would pay a maximum of $50 a month to support services for girls with special needs, and that Megan's family would have to pick up additional expenses.

The Girl Scouts are said to have a good track record of inclusion, so perhaps this is an anomaly. But if you're the parent of a child with special needs, you may well know the challenges of including your child in mainstream activities. I've been wrestling with that since Max spent two weeks in an inclusionary program at a camp in our area. Inclusion is awesome in concept—but in reality, it can be so tricky.

Max had a shadow, a counselor dedicated to helping him out. A couple of days after camp started, I emailed to ask how things were going; it's not something Max could tell me himself. I was told Max had made two "friends" who regularly said hello to him—and he'd "respond positively back." And that Max was having a blast.

Well, OK. I figured Max would have a good time at camp, given that there was a pool and ice-cream, but I'd wanted him to have an inclusionary good time. I wanted to know if kids were otherwise interacting and playing with him.

In subsequent days, I was told that one girl thought Max was "cool" but was having trouble understanding him. The camp hadn't wanted iPads there (to avoid breakage), but I sent it in so Max could use his speech app. I said I was open to other ideas they had about inclusion. I pointed out that Max had good comprehension, and could answer "yes" or "no" questions. I'd already filled out a list of his interests before camp started, along with certain favorite phrases of his.  

At the end of Max's time at camp, I had a brief talk with the program director and Max's shadow. Although Max made some real breakthroughs, including going into a crowded auditorium for singing, and it seemed kids genuinely liked Max (as people tend to do), in the end I just wasn't sure how much he'd interacted with other kids—or how inclusive his time there was, other than the fact that he was physically among so-called typical kids.

I think the camp needs more organized ways of communicating with parents. I will also say that I am SURE my hopes were too high. Max joined the camp mid-summer, and stepping into an already-formed group isn't easy. I am glad he tried it, and grateful that there even is a camp with a program like this in our area (the only one of its kind). Most other camps in our area wouldn't even take Max. But I was disappointed, and left wondering about techniques that help facilitate inclusion.

This same thing cropped up with Boy Scouts earlier this year. The troop leader was open to including Max, except as it turned out Max wasn't open to including them so things didn't work out. At one point, we had the troop over to our home to bake cookies. I had to take Sabrina to a Girl Scouts meeting that night, so Dave held down the fort. Afterward, Dave told me the boys weren't interacting that much with Max. Again, a situation in which they didn't know him well, but I wondered what we could have done to make things go more smoothly.

I so want inclusionary activities for Max, who has spent much of his life around kids who have special needs. Right now, this isn't on Max's radar, but I think it would do him good. Hanging with so-called "typical" kids would give him new perspectives, teach him new things, boost his confidence and open up his world. Inclusion works both ways—Max could expand other kids' perspectives, too, and help them better understand kids with special needs. Also: It would be lovely if he had someone else besides our family to share his fart jokes with.

I'm going to speak with an expert about inclusionary tactics, and I'll share what I learn. Meanwhile, if you've had success with inclusionary activities, please pass along any tactics that have helped.


  1. Hi Ellen,
    So much of what you write I struggle with in my own mind.
    As our kids get older some things are easier but this sort of stuff like communication, inclusion and friendship is reslly hard! cooper attends a mainstream school, he is the only one with special needs right now. Sometimes i toy with the idea of him being in a setting that is more balanced ( looking into a sporting group for power wheelchair users) where more kids use communciation devices or mobility aids. But seeing as you asked he lobes this school and setting and all 300 kids are learning about disbaility and inclusion without really knowing it. ALOT has come down to how this years teacher and integration approach inclusion......she has been firm from the start that everyone needs to listen to Cooper and concentrate on what he is saying, no-one is to jump in and try and talk for him. It really shows in the way the kids talk to Cooper now and have expectaions of him to be a natural part of the group. This teacher has high expectation of him too which always helps. Most often it is up to the adult who is supporting the child to promote inclusion and I really think its something that comes naturally that is genuine and respectful towards others. Sorry for the ramble and not really answering your head swims at this sort of stuff!
    Hope you Dave and Max and Sabrina are well xxx

  2. My son is in partial inclusion at school, where they do a great job of creating a truly inclusive environment. Their success is mostly the result of the great modeling that the adult instructors provide. They consistently enact examples, give guidance in various situations, and give lots of encouragement for the typical kids to learn how to interact with their special needs peers. One of the best things they did was encourage my son to ask other kids for help when he needed it (instead of looking to an adult), and then they instructed the kids on how to be a good friend to Simon. After a few months, Simon was seamlessly incorporated and the other kids really enjoyed interacting with him and even helping him. It is amazing, but it does take a lot of time and a lot of practice.

    On the other hand, we've had similar experiences to the ones you mentioned in your post with other "outside" inclusive programs. Everyone has the best intentions, but the actual follow through hasn't truly worked out yet. It can be very stressful and it is easy to feel defeated after an unsuccessful activity or program.

    I've actually found we far more enjoyed extra curricular stuff set up specifically for kids with special needs (Like our local league of dreams) -- Simon can be himself, with kids like him, and we can be ourselves with families facing similar challenges.The stress level goes way down and we actually enjoy the activity more.

    I also find these opportunities are good for my "typical" daughter who's school doesn't have much inclusion. She gets to meet other sibs and see other children with special needs. It normalizes her experience a bit more, she's even brought her friends with her to these activities which has been great.

    Sorry -- I don't know if this helps, but thank you for creating this discussion. I'd love strategies for making the shorter-term inclusion activities more successful.

  3. The girl scouts were expected to pay for an interpretor??? From what funds? They're non profit! I co-led a girl scout troup for several years and we had 2 special needs children in our troop. One was deaf. We included them just like the other kids but these two needed a bit more which never seemed to be an issue. Either of the leaders would be more hands on or the moms would help out. I'm confused!

  4. Expecting Girl Scouts to pay for an interpreter seems ridiculous. I feel it's like asking them to pay for my daughters glasses so she can see better at the meetings. Parents are financially responsible for their childrens extra curricular activities. If you can't afford the correct equipment (accommodation) you don't play. Seems a sense of entitlement was in the picture a little too much here.
    I'm hoping the story actually said that "THE GIRL SCOUT made a huge effort on her OWN to sell as many nuts/cookies as she could to raise the funds to offset the cost of the interpreter." Fund raised as a TROOP used for one scout will cause just HUGE resentment toward her in the troop and carry over into school as well. As with inclusion students in mainstream classes, their modified assignments are hard for (some) other students to understand or see as fare. This doesn't make them a desired friend to seek out on the playground. There is a huge difference between being accepted and actually being included. A "hello" or "high-five" is only acceptance. Starting a conversation or asking them to join a game in truly being included.

  5. One thing I struggle with regarding "inclusion" is whether I'm responding to my own wishes for my son (who is on the autism spectrum), instead of respecting his own comfort levels. He likes being around other kids, but perhaps full-blown "inclusion" would stress him out more than it would benefit him.

    I would love to see him interacting with other kids the way he interacts with our family members, but maybe -- just maybe -- that's not such a huge priority for him, especially in large groups, which tend to make him clam up and move off to the side to play alone or with one other kid, often one with special needs, too.

    So, my point is that if I leave him alone in a new group -- the school classroom, a camp, etc. -- I consciously try not to set any expectations regarding his behavior towards the other kids. We have IEP goals, of course, and I work with his para and teachers to track his progress -- but there's a point where we just have to respect his social differences, and let him be who he wants to be, not who we want him to be, when it comes to interacting with peers.

    I might be hurt, for example, if a friend didn't say hello to me, but it doesn't really hurt his feelings when that happens. We adults also have to employ "theory of mind" not just to our kids, but to ourselves, and realize that our kids often don't think and feel the same way we do, and let them be who they are.

  6. To Anonymous squared: FYI, it is FEDERAL LAW that nonprofits and businesses who serve the public make accommodations for those with disabilities, including "effective communication" for the deaf. However, groups can bypass if this they can prove the accommodation places an undue burden on the institution.

    Bronywn and Laura, I so agree, everyone has the best of intentions but success very much depends on the modeling the instructors provide.

    And Anon #3: Right now, yes, the drive for inclusion is totally my own. Max doesn't care. He's perfectly content with hanging out with kids who have special needs, and he does participate in those programs. But I think it would be such a good thing for him. If we successfully tried such a program and he didn't like it, I wouldn't force it. But I would like to find such a program.

  7. A nice example of inclusion in camp is the Little Bit Therapeutic Riding Center in Woodinville, WA. It provides all year long therapy but in the summer opens its camp programs to siblings too so you get a good mix of typically developing children who have special needs brothers and sisters and kids with special needs. And it works because the sibs are so used to their brothers and sisters with special needs that it isn't a stretch to make friends with other kids with special needs.

    Another idea is to employee camp counselors with special needs. Recently we were at Portland Shriner's Hospital for a gait study and my son was amazed by all of the employees with orthotics and walkers/wheelchairs because they had CP or other.

    If I were running the camp, I would market my camp to therapy establishments and try to enroll kids with special needs and pair each child with a buddy who was typically developing and have inclusion activities throughout the day to foster interaction. Just my two cents.

    Thanks for writing as always!


    Thanks for writing!

  8. This brings to mind the smallest , littlest moment that happened last night. It may not be to the full scope of what you are looking for...but i'll share anyway. My upstairs neighbors have two girls around the same ages as my boys, 3 and 4 years. ( let me preface by saying that I'm divorced, but I am seeing someone who my kids adore and the feeling is mutual on his side too. He plays with the kids when he comes home from work and he is always loking for ways to help out my oldest with therapy and such) Well, we took theboys upstairs last night for my neighbors bday party and the kids were playing...chasing eachother around, while my oldest who is autistic just sort of wandered about. The oldest girl was playing a game with my boyfriend where he was holding up his hands in different positions and she was slapping them before he moved them away. My oldest passed him and I watched as he grabbed a hold of him, turned him around to face the girl and used his hands ( hand over hand) to play the game with the her. His face lit up, he smiled and giggled and didnt mind letting my boyfriend hold onto him at all. It's the little things that I think sometimes people just don't think of because it seems TOO small...but in our kids worlds, it's really not.

  9. Seems to me you're taking the right approach if you just keep doing why you're doing and trying different things. Like with any kid, there probably won't be one major transformational experience, but they'll all work together. Some of the things you try will be better than others, but as long as they aren't bad experiences for him, they'll either build into something good over time or you'll hit a few REALLY good ones. If you don't try, you'll definitely not succeed, so you're on the right path!

  10. Inclusion is a goal for us as well, but figuring it all out is not easy. Our district does not have much inclusion that we've seen (but then there aren't a lot of orthopedicly impaired kids here either!) so it will be interesting when Jackson is ready to start kindergarten in 2 more years. After this year at the Bridge School (a special school for kids with CP) he will probably do a year at a "typical" preschool before starting kindergarten instead of going into the district special ed class. I've heard about inclusion public preschools in some areas (I know around Boston has them!) which would be ideal, but no such luck here!

    Good luck with your quest for inclusion!! (And have you watched the movie Including Samuel yet? We loved it!!)

  11. Ellen - you say it's federal law for businesses who serve the public to make accomodations for the disabled including communication. Does this mean that Target has to provide a deaf interpreter? Does the movie theater have to subtitle the movies? Does Barnes and Noble have to offer books on tape for every title they have? What about the inflatables play place - my daughter can't walk so she can't play there, don't they have to hire someone to hold her up so she can bounce?

    While I fully believe that any time our tax dollars are used to provide a service (such as schools) then full accomodations must be made, but it's just not realistic for private organizations and businesses. When I sign my daughter up for events/classes, I attend with her or otherwise provide the adaptations she needs (she is diabetic and mobility disabled). I don't expect Miracle League to provide her a nurse. If I signed her up for Girl Scouts, I would go with her. I would prefer the GS use their money to provide their programs rather than something particular for my child. It's one thing to accomodate a disability by making small changes (if the GS leader writes down instructions for the girl), but to expect them to hire an interpreter isn't reasonable.

  12. In Canada we have respite services for kids under 18. That's how I did my camp. It's hard to get people to understand that you're a person with ideas and feelings.

  13. Hey Ellen,

    Can you point me to the relevant federal law? I'm surprised to hear that individual local, private groups would be subject to that requirement, and I'd like to read up on it.


  14. I'm torn, seriously.

    I feel that inclusion is much, much more than an aide or an interpreter. My son has a severe mental illness (childhood onset schizophrenia)yet still was a Cub Scout and played Pop Warner Football. Our accommodation was that my husband was the equipment manager for the football team, and the den leader for the scouts, so if Tim was having a particularly hard day, his shadow aide - Dad - was right there. We never asked the scouts or Pop Warner to provide such an accommodation because, frankly, we never considered asking.

    But even more important to us than an aide was that Tim be included by the neurotypical kids. With Dad there as part of the activity, he was. In fact, one of my most treasured memories is when, third year into Pop Warner, a new kid joined the team my son had been on with the same other 19 boys. Tim could not comprehend the huddle, so the boys - all on their own - had always huddled, then the boy that lined up next to Tim told him the play after the huddle. That was their normal way to play football.

    The new boy didn't like this, calling Tim "retarded" because he couldn't understand the 10 other boys in the huddle, over the voices in his head. Tim's long-time teammates told him to take it back. When he didn't, they, well, let's say they tackled him. repeatedly.

    Tim was included. That made a world of difference in how Tim saw himself and how the other boys - now all over age 18 - say peers with disabilities, for the rest of their childhoods.

    I'm torn because I'm not sure an aide that was a third party, not affiliated with the activity, would have made that inclusion happen. I wonder if it would have made Tim stand out more. I don't know.

  15. Chrisa, yes, inclusion is definitely much more than just an aide or interpreter. Hearing how your son's teammates came to his defense was heartening.

    Christine: the relevant federal law is that little one known as The Americans With Disabilities Act. ! Here's a good summary of how it applies to those who are hearing impaired:

    Lesley, you are obviously entitled to your opinion, but this is a law. Good for you for being able to accompany your daughter to all her events, and to not expect accommodation, but please don't assume that all parents can do so—or that all kids with disabilities can make due without accommodation. I don't know about the particulars of the Illinois case, but it seems unreasonable to expect the mother to attend every meeting. Maybe she works full-time? Maybe she can't afford a sitter for other kids? Who knows.

  16. We do Boy Scouts with my son. He already knew all the boys from church since it is a church pack. I talked to the den leader and let her know that he was more capable than he let on and that she should treat him the same way as the other boys with in reason (he only has full use of one hand so there are times when he just can't do an activity). I think the boys get along with his well. I don't stick around hovering for meetings or anything but I trust the den leader to alert me to any issues.

  17. Just pointing out I was in Girl Scouts as well as a girl with CI's hearing(well she was in the brownie troop when i was in caddets) and our regional chapter supported us well so i think that the chigago regional branch is at blame not the entire national chapter. Just saying and I wished Max had an inclusionary fun time!

  18. What a good topic! My daughter has a lifetime ahead of her trying to figure out the right spot in life. She would love to be included with her peers (all of them) but there are times when she also doesn't want to be the center of attention or to have a fuss made over her to accommodate her needs. Kids with special needs have so many challenges in their daily lives that it would just be nice to have a welcoming environment from "typical" groups and not to be made out to be so different or to have your needs be a hassle. I think parents of typical kids and parents of kids with special needs are both responsible to create an environment that works for everyone. Reasonable expectations, extra consideration, extra effort from everyone to make it work. My daughter goes to a regular public school, she has tried dance, choir, girl scouts, horse-back riding, etc. and the best indicator on how these activities work is the leadership behind them. As a parent it takes thick skin to put up with rude comments, lack of consideration, plain ignorance, and imposing curiosity... when inclusion works it is magical!! Thanks for opening this topic Ellen!

  19. Thanks for lessening my ignorance on this - it certainly does look like Girl Scouts and similar groups would be subject to the ADA (unless of course they had a long history of an exclusion of the disabled as a core part of their viewpoint, I suppose).

    I still think with troops that get by on some dues and cents on the box cookie sale revenues, you'd run into a lot of "undue burden" defenses, but yeah, it applies!

  20. I made one of my best friends at an inclusion project at my school. We went sailing or canoeing with kids from a local special needs school. It worked really well because we were all learning a new skill, had all chosen to be there and the ratio was about 50:50

    Hannah and I met there when we were teenagers and are very good friends now in our 20s.

    We also worked together at her school's holiday play scheme, which is the next inclusion project I've seen that works really well.

    The Fun Club was for local kids with special needs and their siblings.This meant that all the kids had some knowledge of special needs and that all kids are just kids, but every one is different.

    The other awesome thing was that Hannah started out as one of the kids at the club and then when she aged out became one of the staff. Many of the kids did that - not matter what their ability.

  21. Actually I have 2 other friends with disabilities that I met there too, who are now adults, like me.

  22. Ellen. It is important for Lesley and your other readers to know that the Girl Scouts (at least the regional counsil being sued in the case) DO RECIEVE TAX DOLLARS in the form of Federal (as well as State and City grants.)

    It is also important to know that it is this reciept of tax dollars that makes them subject to the Federal Rehabilitation Act, the act which they are being sued under (not the ADA).

    Any private organization that does not seek this assistance from the federal government does NOT have to supply these services. The Girls Scouts chose to seek that money and FOR THAT reason alone, is subject to the law and must provide assistance.

  23. Just further clarifying. You are right Ellen that the ADA does require some services of businesses that serve the public but the Rehabilitation Act has more specific requirements and is the act this particular case was filed under. Those organizations who do not seek and obtain Federal assitance are not covered by the Rehabilitation Act.

  24. Interesting post. My son is still young so we'll see how things go as he ages, but inclusion is often on my mind. For now (nearing 3), it's very difficult to get him fully included because of his motor delays/impairment, even though his social skills, speech and cognitive skills are at age level. He does best playing with just one other kid, but with any larger group there's just too much running around and he can't keep up. A 1:1 aide could help sort of, but would be a crutch given his personality and also a distraction to the kids.

    Lori - I'd love to hear more about the gait analysis - we've been thinking about getting one done for out son. He also goes to Little Bit - I've been really impressed with what I've seen of their summer camp.

  25. Ah! True inclusion would be so awesome! Just like taking multicultural classes, I think we need more public education. Maybe then, children would find it "normal" to be different?

    I wonder if therapists could start inclusion programs? Setting up group activities that include everyone's skills? I plan on creating play dates with "typical" children and my son and experiment with this idea.

  26. Hi Ellen! I'm a long-time reader from Canada and I also supervise summer camps for my municipality. We have lots of kids who come to camp alongside typically-developing kids. A few years ago we started a peer-mediated program at our day camps called Camps on TRACKS, which teaches campers how to interact with other kids who might be different. It's improved not just inclusion but has really increased social interactions between kids with special needs and their peers, while our 1:1 support staff step back and let those interactions occur. It's totally changed our camps for the better and now it's spreading across our province (Ontario) because it works so well. Anyways, check out a few clips at (it's a simple website because it was just used for a training session we had)and if you'd like some more info, maybe we could email or something. Love the blog!

  27. Thank you, Anon, for the important clarifications and added info.

    GreenGrl, AMEN, it would be so wonderful if parents of typically-developing kids cared as much as some of us parents of kids with special needs do about inclusion.

    Claire, I love that your school had an inclusion project. It hadn't occurred to me to check with schools in our area; I will.

    Bea: Inclusionary therapy sessions WOULD BE GENIUS. Seriously. Please. Do. It. Also: Maybe you could come move near us?

    Laurie, thank you so much for sharing, I will check out the clips.

  28. We started homeschooling my daughter in middle school because she has a seizure disorder and needed more sleep and less stress. We were fortunate to find a group of homeschoolers who had a bowling league. Sarah still bowls with this group - 7 years now - and is friends with 4 other girls on their league. They have lunch and birthday parties together. And the moms are very supportive of each other. We have a child in a wheelchair in the bowling league which has turned more into a kids with special needs league (ADHD, Asperger's, CP, MR). We prefer this league rather than Special Olympics - which is great - but requires traveling. I'm a former special ed teacher and we tried inclusion and it just didn't work out well for Sarah. She is more comfortable with kids with special needs.

  29. Ellen,

    Thanks for setting Anon straight re: interpreting and accommodations. That was raising my ire (and why is that people who write that kind of things ALWAYS go by "Anon"?!)


    My two cents and area of expertise is not from the school or camp end, but I think it's still applicable and the skills/techniques are transferrable. It's from the employment angle.

    PWD are more likely to keep and be valued in the workplace when there is buy in and acceptance with co-workers. So one of the first things I'd do (in my former life) was work with small groups in the workplace. Suss out the skills - or WHATEVER the PWD was bringing to the workplace. Play a lot of those ice breaker, touchy-feely games that make people laugh and like each other.

    I think it's unreasonable to throw a kid - or a adult - with a noticeable disability into the pool of "regular" and think it's going to be fine. It might be, I just think it's more reasonable to go into it with some planning, showing what everyone is all about, connecting people, making it clear that everyone is offering something of value.

  30. Inclusion is tricky indeed on the one hand you want your kids to be treated like everybody else on the other hand you don't want people to be as "rough" with your child as they would be other kids.

  31. My 4-year-old (non-verbal, some mild motor delays, some sensory issues, formerly trached and vented) is in a regular daycare center with same-age peers.

    The center has been amazing - he gets a lot out of being there, and is learning a ton. We've run into classmates at the store and in the neighborhood and everyone wants to play with him. We're all hoping that getting him a communication device this fall will take this to a new level.

    He's also in special ed preschool half the day during the school year, and twice a week they have an activity with a mainstream preschool class down the hall. So far, that doesn't seem as useful for any of them - the special ed class (which is a mixed class with a variety of diagnoses) or the mainstream class. There's no chance for them really to get to know each other, so it doesn't create a lot of interaction. But the school gets to say, "see, we're doing inclusion!" (in fact, that's how the teacher described it last year: "doing inclusion")


Thanks for sharing!

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