Tuesday, February 7, 2012

Social world shrinks as disabled kids grow


















Soon after our son Ben was born, a geneticist gave us the news that our baby had a greater than 50 per cent chance of having a rare genetic disorder. After listening to a vague description of potential bone and development problems, and clinging to the stat that 25 per cent of these kids were intellectually 'normal,' my husband asked, through silent tears: "But will he still be able to run and jump and play with his friends?"

At the time, we didn't question that Ben would have friends.

We didn't know that being friendless was the norm for kids with physical and intellectual disabilities.

I really DON'T want to write this post.

I don't want to believe that my son will never be able to develop friends naturally because he can't speak, looks different, can’t keep up physically or intellectually with his peers and does things that aren't 'cool' for his age.

But in the last few weeks, the evidence outside our own personal experience has been mounting, and continues to slap me in the face.

It started with a British study -- aptly named Does Every Child Matter? Researchers followed children with disabilities and their families through interviews and observation for 32 months. One of the key findings was that parents face huge pressure to 'make their child normal' and when they aren't successful, the child and family are excluded -- from friendships, at school and in the community. The biggest barrier to participating in sports or community activities was not access or transportation, but attitudes. Children participated in segregated community programs, researchers found, because they had no other choice. At school, they were segregated because of the requirement to be 'able' and to develop typically, and because special-ed policies have placed the 'problem' of disability within the child, instead of within the disabling environment, the scientists said.

Then there was the Holland Bloorview research that showed teachers and students alike shut out kids with cerebral palsy in regular classes. "The kids act like I am invisible," one participant said. And it's not just the children. A teacher turns off a student's communication device, rendering the student silent. Another teacher refuses to allow a child to have a bathroom communication button -- so the child, toilet-trained, must wear diapers. The reason? The button would disturb other students.

And the final nail in the coffin? In Dr. Anne Snowdon's recent study of 166 families in three Canadian cities, more than half of children with physical and developmental disabilities have no friends or only one friend. Only 1 per cent spend an hour a day with a friend.

Can you imagine the outcry if any other population of Canadian children was found to be this isolated and alone?

Reporting on Snowdon's study, André Picard writes in The Globe and Mail: "In childhood, efforts are made, but by the time kids hit age 10 or so, when cliques and social circles form outside of parental control, ostracization and isolation is near complete."

According to a U.S. National Institutes of Health funded study in Ontario, the teen years are particularly difficult. While peers become involved in a growing array of activities that widens their social network, teens with disabilities tend to stick with the same activities, often with family members.

Ben wants friends. I used to love watching him stand as a small child at the window, signing, "Friends, where?" as we waited for the birthday party guests to arrive. When he was younger, he had some authentic friends. In particular, students rose to the occasion at an alternative elementary school he attended that had a philosophy of promoting diversity. There was Adaku, a girl who was fascinated with sign language, came for play dates and regularly spent time with Ben. She read his poem about a gorilla at a school function.

There was Eli (back photo above). One day another student questioned Eli about his friendship with Ben, and Eli responded by saying: "Ben? He's one of my best friends" and put his arm around Ben's shoulders.

But things got trickier as the kids moved into puberty: they were now twice the size of Ben, who has a form of dwarfism, we still hadn't found a reliable way for Ben to communicate, and he couldn't keep up intellectually or socially. He had one good year at the Metro School for the Deaf -- a segregated program within a regular elementary school. The kids were fond of him, he occasionally had students over, and he liked the kids who rode his bus.

Friendships didn't materialize at his segregated high school 40 minutes away: all the students were bussed in and lived in different parts of the city. If you invited kids to a party, parents never RSVP'd and often the kids didn't show. Ben's school reports indicated that he had no contact with the other students -- which was hard for me to believe, because he is sociable.

I have a meeting at Ben's mainstream school in a week and I want to know whether he's made any progress socially there. He doesn't get phone calls or texts with constant requests to go out like the rest of my children. His weekends are free. He still doesn't have a way to clearly communicate with people, which seems to be the basis of all friendship. He does have guts. He was the only student in the deaf and hard of hearing program who went to the school's Halloween dance (with his worker Marjorie). Apparently some girls asked him to dance. When we did his life plan, I wrote out about a dozen possible dreams for the future, and he immediately scanned through them and pointed to "have friends."

I read the comments posted on media stories about research showing exclusion of children with disabilities. Many have disturbing, although predictable, themes: You can't 'force' a child to be friends with a disabled child; Parents should have aborted their kids so they didn't have to experience this misery; Why would a child invest time in a disabled child when he or she could get so much more from a typical child?; Any relationship between a disabled and typical child involves charity on the part of the 'regular' one.

If the parents and brothers and sisters of our children have meaningful relationships with them -- why can't anyone else?

No Ordinary Boy author Jennifer Johannesen and I were discussing this the other day. She pointed out that although workers had authentic relationships with her son Owen, she had to pay them to spend the time with Owen -- time that was necessary to get to know the boy inside.

And perhaps that is the bottom line. It takes more time than any teenager is willing to spend to get to know our kids, who are often locked in bodies that limit self-expression.

I didn't want to write this article. But when I came in today, I read this blog entry by Ben's worker Marjorie: 'It's fine, I don't care.' It's about a Super Bowl party one of her adult clients organized. Most of the friends he invited from college didn't come. "It's fine, I don't care," he said.

Marjorie writes: "I once took a small conference with David Hingsburger, and he said something I will never forget: 'You will always be more important in the life of someone with a disability than they are in yours.'"

I'm assuming Hingsburger was referring to how few friends disabled youth have compared to their peers -- which would mean that any friendship is more valued by them.

But it really bothered me, reading that quote. It suggests that the person with disabilities always has less to bring to the relationship. Which is wrong.

The whole topic of youth with disabilities and social isolation makes my blood boil.

42 comments:

I have come to see the amount of effort on my part that is required to promote relationships of peers with my 9 y/o daughter who has disabilities, and it is so very much! I am not naturally outgoing myself, and with my own recent cancer diagnosis, my energy is often spent. Real friendship for her can sometimes appear to be an impossible dream. And yet I have hope.
When she was diagnosed shortly after birth, and once she was out of mortal danger, my fears and concerns centered not around her potential handicaps and deficits (we will deal with those!), but around the attitude of others, which is more of a wild card. And that has been borne out. Those remarkable people who start with a positive attitude, and not "what's in it for me", and put in the effort required to know my daughter, most frequently do get more out of knowing her than expected. But that effort is required, and it's a difficult hump to get over.

Dear Louise,

Such a thought provoking post which brought back many memories.

Your words about Ben and so many others pulled at my heart strings today. To read about our special children who only really want friendships and time from their peers.

I know when Savannah went from a normal toddler to a disabled one, many of her friends were scared of her and didn't know how to act around her. And then there were the adults.....

I wish reality was different to what it is and I wish I had some suggestions to help.

Savannah's BFF was 45 and came to the house everyday with a smile and so much fun wrapped up in her visits I am indebted to her forever for the time and smiles she gave Savannah.

I wish we lived closer as I know Dempsey would adore Ben!

Sending a hug to you Louise,
Diana x

I understand so many of your feelings in this post. My daughter is almost 11 with Cri du Chat Syndrome. She has had a lot of success with making friends and keeping friends. I get a little nervous thinking about junior high and high school though...but I'm confident that the friendships she's made are strong and will last. It has taken a lot of work on my part though. Sometimes I felt (and still feel) like giving up in that area b/c it would be so much easier...but I don't. I hope you can find some friends for Ben...everyone should have true friends.

Friends in the UK write "The only true disability is lonliness." (See http://www.inclusive-solutions.com/)We've spent most of my daughter's life working with that premise. As often the first one to be included, friendships were a struggle, particularly in the high school years, BUT we were able to find communities and activities that actively embraced Jessie's belonging . . and nurtured true, respectful, fun (and sometimes drama-filled) relationships. I have a lot more to say on the subject (rather, share). But its a bit too complex and convoluted (like relationships!) to fit as a comment. I'll try to think in more depth about it (I actually feel like I've spent a life-time thinking about this) . . . . look forward to reading what others have to post.

As I was reading through this post, I found myself nodding in agreement at so many sentences. It hits very close to home for me because my son is so cognitively aware but lacks the ability to communicate in a meaningful and consistent way.
But the statement that took my breath away and made me feel like I was kicked in the stomach was:
"You will always be more important in the life of someone with a disability than they are in yours.' Truer words have never been spoken.
Marcy

I won't stop trying to help friendships happen.

Acceptance, friendship, and love are gifts given from one human being to another. Unfortunately, many will never see my humanity.

Matt Kamaratakis

Hi Louise - so glad you wrote about this! I think there are (like with all the things we talk about!) a few things at work here.

Social isolation is indeed a problem but not an easy one to sort out. With Owen,our early years' focus was as much on making him look approachable and less different to other kids (so they might see him as one of them) as it was on helping him enjoy encounters. I honestly can't think of anything in our journey that was more depressing. Most people, especially children, know when they're being tricked or coerced or bribed in some way. Earnest efforts to include can go sideways quite quickly.

A second but related issue is how we as parents feel about it. In our conversation last week, I wondered out loud: what if Ben's lack of peer friendships is the same sort of 'challenge' as his physical issues? What if it's a reality that just has to be accepted? (Which, by the way, doesn't necessarily mean one stops creating opportunities for connection.) I agree that it's a difficult pill to swallow - as are so many of the disabilities and barriers our children face. But this issue in particular, by definition, requires the full and willing and eager participation of the other party. If it's not there, it's not there. You can't legislate or artificially construct friendship.

And, I don't think it's possible to worry something into existence! And still we all try. I wish there was a shortcut.

Meant to comment on the Hingsburger quote: I disagree that this should be a blanket statement. All relationships are transactional in some way - we each give and we each get. Often it's something different on each side. And what we think we're giving is not necessarily perceived the same by the other.

Perhaps one way to look at this quote is to wonder who has the power and ability to initiate freely - in many cases, it's the person without the disabilities. So in this respect, commitment to the relationship is extra important. But I'm being generous.

I don't like the quote or agree with it - throws the relationship out of balance and makes gross assumptions about what a non-disabled person is or isn't getting out of the relationship. And the person with disabilities, for that matter.

So nice to read some positive stories about making friends.
Jacob's mom, I was going to make a similar comment as
Jennifer regarding Dave's quote.
While I respect Mr Hingsburger and know he does very important work, I don't agree with his perspective on everything. Besides, is that quote in context?

When I read the statement again this morning, I looked at it in a different way and can see why people disagree with my comment. Reading it last night, I was thinking about people who came into our lives as a 'project' and when the school year was over, they disappeared. And that left a void in Jake's life whereas I wonder whether the other kids felt the same way.
In cases where a 'real' relationship exists, I wholeheartedly agree that both sides benefit tremendously and I wouldn't think to ask who gets more out of it.

I think this Israeli scouts organization should be a model for something in the U.S. along the same lines. It's a huge success here.

http://www.krembo.org.il/

Let me add that that this also holds for kids with invisible disabilities. My 10YO son with bipolar is in a contained classroom, and mainstreamed part of the day. With the exception of "everyone in the class is invited" birthday parties for the special ed kids, he's never been invited over to a mainstream kid's house to play. And now that he's stabilizing, he really gets that he has no friends. Junior high is around the corner, and it's hard not to cringe in fear.

Because of the stigma, I am Anonymous in Seattle.

Hi Kate -- Thank you for writing!

Is your daughter in a typical school? I can't remember? I was wondering when you talked about promoting relationships where you were doing this -- with what kids? In the neighbourhood? At school? I'd love to hear more.

Thank you for letting me know that you had a successful surgery! Take care of yourself! Louise

Hi Diana -- As always, great to hear from you. You have a unique perspective because you were able to see how children's and adults' reactions changed as a result of Savannah's illness. That must have been SO hard. Who was the BFF who came to visit? You said 45 -- but did you mean a 4 or 5-year old? Or was it an adult friend of the family?

It's amazing who steps up to the plate at times like these.

Hugs back to you!

Hi Tiffany -- Thanks for writing! I would love to hear more abour your daughter. Are her friends primarily at school or in the neighbourhood?

Hi Nan -- The quote you mentioned is similar to one I saw in a newspaper article related to this research - it was from Mother Teresa and said: Loneliness is the greatest poverty.

Perhaps you can write a post for us about Jessie's experiences? It sounds like she has a very rich social life. Thanks for writing!

Hi Marcy -- I think I read that quote the same way you did. No parent wants to feel that an interaction with their child has been a 'project' for another child or children that they then 'move on' from.

Thanks for sharing!

Hi Barbara -- it would be great if you told us more about how you promote friendships -- and with what populations? Do you work with kids who are very complex and non-verbal? I would love to hear more. Thanks!

Thank you Matt.

If we define friendship as acceptance it should be something that any child can be a part of.

Acceptance is somewhat different from the give and take people often think of when they think of friendship.

Hey Jen -- thanks for your comments!

I agree that when we try to 'construct' a friendship by trying to convince the other kids that our kid is 'the same' (eg what you said about making the child look less 'different' or more approachable -- I think you mentioned the other day playdates where Owen was doing an activity like playing with cars or trucks because other boys like that but it wasn't something he naturally enjoyed) it backfires.

The saying about how 'we're all the same really' has never resonated for me. I am more comfortable in environments where differences are embraced -- yes, we have many of the same emotions, but we come in all different packages with different experiences. Difference isn't a 'lesser than' -- difference contributes to richness.

So I guess as young children instead of trying to 'orchestrate' an activity to show that the child with disability is the same' as the other kids, it would make more sense to have less structured time together where children could gravitate toward what they enjoy and it's also okay just to BE PRESENT and not "doing" something.

It's funny because when I look back I think of similar playdates where I tried to come up with the most fabulous activity -- but enjoying someone's company isn't about the activity is it?

Thank you Allison for the link to the inclusive scouts group in Israel.

I liked this Youtube video they have:

http://youtu.be/rMbl7ovW9Qs

Have any of your children participated in this?

It would be great to hear more. Thanks! Louise

Hi Jen -- Part 2!

You wrote: "what if Ben's lack of peer friendships is the same sort of 'challenge' as his physical issues? What if it's a reality that just has to be accepted? "

I hope friendship can transcend clinical 'skills/abilities' and be more spiritual, I guess, about knowing the essence of a person -- but I also recognize that communication/movement barriers can make it hard for our kids to share their essence.

I hope friendship can be more flexible and inclusive and not be dependent on what a person can 'do' -- but perhaps I'm idealistic/not realistic.

I guess I think that as children -- and especially teens -- friendship is looked at as a transaction -- as you mentioned. But I think as people age they think less in those kind of terms (e.g. what am I getting out of this?)

I guess I am hoping for a cultural shift :(

I was interested to see Allison's link about the scouts group in Israel because it reminded me of wonderful experiences that Marcy, who is in on this thread, had when her son attended a program run by teenage girls at a Jewish school. And one of the reasons that program worked (I think -- Marcy?) is because of the values that were instilled in the students about every person making contributions.

Dear Anonymous in Seattle

Thank you for sharing your experience! That breaks my heart to hear about your son.

What efforts does the school make to promote friendships between the kids in your son's class and the mainstream kids?

When Ben was in the deaf/hh program of a school that had a contained behaviour class, I felt that staff actively discouraged the kids from developing friendships outside the classroom.

In one instance, when we invited a boy that Ben was very fond of to a party, we got an earful from staff about the 'risk' to other children, liability if anything happened, etc.

I hope you email me so I can send you a copy of the new BLOOM magazine which is out in the next week:

lkinross@hollandbloorview.ca

Hi again - I meant transactional in that both parties exchange energy... it can't be one-sided or it's not a friendship or connection. Children are much less sophisticated in appreciating the nuances- they don't do subtlety very well!

Thanks Jen -- that's an important distinction (re transaction). I always think of it in the business sense. You mean it in the sense of giving/sharing energy?

Hi Louise. You're right, we have had some tremendous experiences with a group of ulta-orthodox (Jewish)girls who have embraced Jacob in such a loving, non-judgemental and accepting way. They run a program every Sunday out of their school, they organize three days of activities during the Christmas break for kids like my son who don't have days filled with play dates and they come over to our house to help or simply to play with Jacob. And, as you know, some of them have taken Jacob to overnight camp for a month for the past three years, comfortable with all aspects of his care (and he needs 24 hour care). We are so lucky to have these girls in our lives. They adore my son and Jacob definitely benefits from their friendships, and I have learned so much from them about selfless giving.
Marcy

Hi again (and hi Marcy!)

I read Marcy's comment with real appreciation for cultural values which support inclusion in a way that Jacob (and the girls) surely benefit from...

But I would love to know if this kind of connection is what Louise is longing for, for Ben? I think what Marcy describes is a kind of volunteerism that fits with certain cultural/religious values - 'selfless giving'. Does this count as friendship? Certainly it creates the opportunity for authentic connection - just like hiring someone, or enrolling them in a program... But again the construct has to exist in order for the friendships to form. It's the reality of disability.

As a parent of a 16 year old with CP and NVLD, it is disheartening to see my loving, social son constantly "wish" for friends. At his high school, some teenagers are earning their volunteer hours for school by meeting him after lunch to chat for a few minutes in a social circle, and he considers them friends. Last summer I suggested he pass out his telephone number to meet some of them to go to the movies once in a while, which they were able to do once. It was so disheartening to know how excited he was to be meeting them ... and how disinterested they were to be there (one texted on her cell phone all through the movie). I guess there was less interest when there wasn't a volunteer hour payout at the end of the movie. When my son would call his "friends" to chat in the summer, sometimes their parents would hang up on him... not to be rude, but because his speech is impaired.

On a good note, my son has had the best luck "making friends" when interacting with adult volunteers at the various programs we have attended (therapeutic horseback riding, disabled skiing, disabled sports). I find the adults who volunteer at these places actually treat my son like a human being, and allow him to enjoy social interactions that are almost normal. I long ago began judging family friends and activities based on how the people interact with my disabled son... if they can't look him in the eye and talk to him normally, we stopped seeing them socially or attending the activity.

I don't know what the solution is... my son definitely needs more social interaction. I'm hoping as he becomes a disabled adult, there will be some adult social programs he can attend, perhaps through March of Dimes... I think the Befriending program there has good possibilities. Even though his social circle is very small, I still think the value of a few good friendships is worth pursuing... and I think people have to keep trying to find the right social situation to let your disabled child grow and express themselves. Don't give up on finding it, even if it seems like the opportunity doesn't exist... Somehow, even though he has no friends (just family who act like friends)... my son always wakes up happy and sees the cheerful side of life... and I hope someday that gift of his is recognized and valued by a true friend his own age.

Hi Jennifer --it's Matt.

Friendship can emerge through benevolence and compassion. If this were not so, would you be talking to me?

Nonetheless, in the context of severe or cognitive disability, there is nothing wrong with "selfless giving." Sometimes, this will occur at a public forum, such as your book launch, or in a personal setting. Either way, "Nobody walks away empty handed --you should know this better than anyone."

love
matt

Thanks for asking, Louise.

As an OT and PT serving children development altering diagnoses - well, all my work promotes the children living more fully socially - resulting in the opportunity to form friendships. The more accomplished a child with a diagnosis feels about himself, the more likely he will venture into relationships. I think. What do you think?

Hi -- Jen -- how would you define exchanging energy? Does it have to be exchanged in traditional ways (through speech?)

If 2 kids are sitting watching a TV show and laughing together, but they can't actually speak to each other, are they still exchanging energy?

I'm not sure what my answer is to your question about the kind of friendship I want. I think you're talking about a friendship that can be sustained by the 2 people in it -- who are able to organize communication, getting together, etc.

But sometimes I think there can be an overlap between those self-sustaining friendships and ones that involve children that would have trouble independently keeping up their end of the relationship.

I don't know enough about that scouts program, but is it possible that there could be genuine friendship that occurs in a situation like that (as opposed to the able person thinking they are 'volunteering?') The interesting thing about the volunteers here at Bloorview is they always say they get more out of it than the kids they're working with. So is volunteering selfless?

It's all very interesting and I think this is an area that isn't talked about very much -- but it's very important and needs to be discussed and examined.

Thank you for writing Mom3gr8kids!

It sounds like your son has a great attitude and lot of guts.

I have heard people weigh in differently on the idea of having students earn their high school community/ volunteer hours in activities with students with disabilities.

One the one hand, it's unfortunate that the students have to 'earn' something for participating -- instead of simply participating. On the other hand, I would imagine in some cases it allows kids to get to know each other who wouldn't otherwise, and hopefully an opportunity to get to know our kids better as people.

I know I thought about suggesting some students at my son's school mentor him for community hours, but it never got off the ground.

I think teens can be horrible to one another -- as their need to be part of the 'in group' -- and exclude others -- is so great.

It's good to hear about the interaction your son has with the adult volunteers at his programs.

Do you think there can be an overlap between volunteer and friend? Or is there a difference?

It would be great to hear more!

Louise, I can believe this was a difficult post to write. It was difficult to read as well, because it is so true. The genuine friends of the elementary days were left behind when we moved, and now high school is such a different story. It breaks my heart. Thanks for tackling this difficult topic. You've obviously hit a chord with your readers.

I'm right with you on challenging the Hingsburger quote about people with disabilities having less importance in our lives than we have in theirs. Our daughter is a life-changer...not just within our family, but for her teachers and our family friends. Our kids challenge others to examine themselves, their own beliefs and actions, in special and very important ways. They bless us with their unique gifts. Certainly I have been blessed by my daughter with disabilities more than any other individual I can think of.

Hi Barbara -- Thanks for your message!

I think that for kids who don't speak or have a reliable, timely communication system (equivalent to speech), it can be really challenging to make friends.

It is hard for typical kids to find a satisfying way to interact with the child. I think when kids are younger, that interaction can be facilitated more easily by parents.

But in the teen years I don't think many typical teens are patient enough to spend time with a peer who can't participate in swift communication or who can't keep up with them physically.

I think if a child can speak or communicate clearly they have a ton of advantages.

If the child can't, even if he feels good about himself, I think there are a lot of practical barriers.

Hi again Louise,

Back to answer your questions...

Unfortunately, I do have a unique perspective because Savannah went from a child who could interact with others and play to one who lost her voice and the use of her legs and hands...it was heartbreaking to watch. That's why this post hit a heart chord with me...I truly feel for Ben and also for his beautiful mum, having to watch the heartache.

Savannah's BFF was an aussie girl who's husband worked with my husband, her name was Trishie.

Trishie was 45 years old, however was almost as much fun as a 4 year old. She came every day to visit, made Savannah laugh and just spent precious time with her.

She also was a sounding board to me as I was in the deepest of depression and sadness over watching Savannah fade away.

I've never forgotton the power of what one person can do for another and I try now to pay it forward to others...especially to special needs kids I encounter. They have so much to deal with on a day to day basis, they teach us all what challenges really are.

Sending you a hug Louise..this post really touched my heart.

love
Diana x

Hi Rose Marie -- thanks so much for writing! I am sorry that Ben's experiences are echoed in yours with your daughter.

What school setting is your daughter in?

Have you found places where she is able to make good connections with people outside school?

Thanks so much for writing! xo

Hi Diana -- thank you for coming back!

It's amazing to hear of your friend Trishie and her role in Savannah's life. You're so right, one person can make a huge difference, and it's heartening to recognize that.

You will have to keep us posted on the grief training work you are doing and share what you learn with us.

Hugs back to you. Louise xo

Excellent point, Louise. The importance of communication cannot be overstated for developing relationships. At the same time, there seem to be some (small group of) individuals who are innately good at non-verbal communication.

Perhaps it is is accurate to say my part is getting children into social situations - mobility-wise and acceptance-wise.

Ouch - this was painful to read, because we all know how true it is - heartbreaking!
On the bright side, regardless of the circumstances that leads to the connections our kids make, these connections _are_ very dear to our kids. I'm much happier that Jacob has these relationships with older girls even if it was inspired by volunteerism.

I'm much more concerned about the connections that really don't extend beyond the charity project. But I wonder if Jacob cares as much as I do? Is it better to have a "friend" for a few months than not at all?

this is so heartbreaking

Thank-you so much for this beautiful post and for your interview on TVOparents.com. This is my mission, and why I created Squag.com. Our family experience comes from loving a child with autism but much of the thinking transfers over to all diffabilities.

Sara Winter
Founder
Squag.com