It's cliché but, hey, let's start with the good news (because it really is good). Teens with cerebral palsy rate their quality of life pretty high, per a new study—the first of its kind—published in the prestigious medical journal The Lancet.
British researchers had 431 adolescents with cerebral palsy, ages 13 to 17, from nine European regions fill out a questionnaire. Then they compared the answers to those of young adults in the general population. Teens with CP rated their overall quality of life as comparable to that of peers without CP. And they reported better quality of life than their peers in five areas: moods and emotions, self-perception, autonomy, relationships with parents and school life. As the lead author noted, this study challenges "the widespread perception that adolescents with disabilities have unhappy, unfulfilled lives."
So there's that. And then there's this: The only category in which teens reported their quality of life as significantly lower than others was in the category of social support from friends and peers.
I wasn't surprised, based on my experiences raising Max and what I've heard from other parents who have kids like him. But I was bummed to read a statistical finding on it.
For a kid who is amazingly friendly and social (and charming and giggly, sorry to gush, I'm his mother), Max does not have non-disabled friends. A lot of this have to do with going to a special needs school, but it's also because being a kid with cognitive and physical disabilities can be very isolating. It's not like Max can jump on a skateboard and cruise the neighborhood with the other kids who live nearby, shoot hoops with them or do any number of active things the kids around here do. Still, it's not only about a physical divide; the other kids are nice to him but just aren't interested in hanging out, probably because they have such varied interests. They want to talk games and sports and tech stuff. Max wants to talk about being a firefighter when he grows up. Meanwhile, I am partly to blame because I have never put a lot of effort into initiating friendships; getting Max to progress physically and cognitively has been all consuming.
The blessing is that Max does not care about this lack of friends—he is content with the life he has. I am of the mindset that he just doesn't know what he's missing and if he did, he would mind. I sure do.
I think having a variety of friends is important to him not just socially but for his future. Last year, I saw the documentary Certain Proof about three kids with CP in a public school and the challenges they face. This quote from an expert has stayed with me—or, rather haunted me: "If these children with severe disabilities are educated in a completely separate environment, they will never have opportunities in the community when they leave and they will have to have systems of separate service delivery for the rest of their lives."
Inclusion in our local school isn't the right setting for Max at this point. I'm not sure it ever will be. So I really have to do more for him socially. I need to figure out ways to enable friendships. Real ones. I've been thinking about putting up a note on my neighborhood Facebook group asking parents to encourage their kids to hang out with him. Or throwing out a request for playdates on my local moms group e-loop. I do not want to make this seem like a charitable deed, because Max is not a charity case, but there is really no organic way of doing this.
Last night, we went to a dinner at our temple for the Jewish holiday of Sukkot. For dessert the kids sat around a large table and decorated cupcakes with blue and white icing and candy. Max has a hard time holding cupcakes because he grasps them so tightly they crumble, so I was feeding it to him. I watched some of the other kids watching him, trying to figure out what was up. His ever-present firefighter hat doesn't make him blend in with the crowd, that's for sure.
When Max was done, I said, "Let's go say hi to the kids!"And we walked over to boys who seemed about his age and I said, "Tell them your name" and he said "Fireman Max!" I often have to prompt him about conversation so then I said, "Ask them their names!" and he did. Then we discussed ages. Then he asked them what they wanted to be when they grow up, which is always a good ice-breaker: An FBI agent! A police officer, who could work together with a fireman! An astronaut!
The kids dashed off and Max was getting tired and wanted to go home. We went and found Sabrina, who was playing Uno in the playroom with other kids. And then, something happened that nearly made me melt into the floor: Max put his hand into hers, which I've never seen him do. The two of them walked out holding hands.
She is there for him. And evidently, God wants me to know it, too. But this boy needs—no, he deserves—more.
Friendship is a hard thing. By Max's age it requires a two way street quality that doesn't seem like it's part of Max's interactions right now. Part of that is what makes max so happy. The " do overs" ....the always being first... The you HAVE to call me " fireman max" You do those because they make max happy. But they don't lead to the learning about the very much give and take (not having others wait for you, letting others do things their way...letting others have their turn) that genuine friendship requires. If Max isn't missing that friendship how much are you willing to take away from what gives him pleasure to provide the tools that may ( though are still not guaranteed to ) give him that? As you said Max simply doesn't have the same interests as his peers. It's pretty hard to have friendships without shared interest.
ReplyDeleteYes, Max does have his (strong) preferences, like wanting to go first when we're going into a place, but he is not as you described above—he gets sharing, taking turns, etc. The shared interests thing is a challenge, for sure.
DeleteLike another commenter said, younger kids may have more shared interests than other 6th graders(I think thats where Max would be right?). If you are okay with that b/c they are not exactly his peers I think friendship could happen. Does his teacher have any ideas?
DeleteI have never discussed with her. I should! She always has great ideas.
DeleteIt's a tough situation, to be sure. Have you heard of the Best Buddies program? They have them in the schools where I live, and my son is paired up with a typical kid his age. The whole group does one event a month, like bowling and they have lunch together sometimes. At the end of the school year the buddies help out with the Special Olympics. It's really a wonderful program.
ReplyDeleteMy son is in a congregated class in a public school and one of the benefits of that is that he absolutely has developed friendships with his peers. He will probably never have friendships with typical kids in the way my other son does, but that's OK, because he is still surrounded by people he cares about and who care about him. Yes, he can't go out and play with the neighbourhood kids, but it is what it is.
Ah, I thought Best Buddies was for kids with Down syndrome! I will explore. I am glad your son is having an inclusionary experience. I love the school Max is in but at the same time, I wonder about what he is missing out on by not having inclusion.
DeleteNo Best Buddies is for kids with a variety of disablities but are usally at public schools. However I do think there is an E-Buddies program.
DeletePlease tell me you didn't try to strike up friendships on Max's behalf I know you have the best intentions but it makes me feel really uncomfortable when my mom does that it's really awkward. Why don't you ask guys at the firehouse if there are any other kids in your area who want to be firefighters and try to get in touch with those kids.
ReplyDeleteNo, I haven't done this with kids although like I said, I was thinking of asking their parents... That's a great idea about checking in with the firefighters!
DeleteHi Ellen -- We reported on the first part of that study years ago -- when they found similar findings in kids with CP aged 8-12 -- that quality of life was on a par with typical peers and wasn't related to degree of disability. It's great to see this second part of the study. I think we as moms place too much emphasis on OUR ability to promote friendships for our kids. Most of us do "all the right things" and yet sometimes kids still don't have friends who are typical peers. I think it's a trap to believe that we have that kind of power and it leads to blaming yourself. xo
ReplyDeleteAs a previous kid with CP I can confirm this. The first time I saw my mother cry was when a friend (whom I didn't even like) stopped talking to me. I was 12 and totally happy to be in my books. I still don't have loads of friends now, but I'm introverted and that's how I want it.
DeleteYes, I do partly blame myself for not putting in enough effort, because I do think it's important. This may or not be feasible but I feel like I have to try.
DeleteEllen, when you and Dave go out with another couple for drinks or dinner, is it a special needs couple, such as, a husband/wife where they both have Down Syndrome?
ReplyDeleteWhen Sabrina does sleep overs are they with profoundly challenged girls like my daughter Addie? Did you and Dave have special needs individuals in your wedding party? I did not, most likely you didn't either
Dave and I are not friends with special needs couples, Sabrina does not have friends with special needs because there are no other kids with SN in her school or our neighborhood .But this is part of my point: Because too often people with special needs live in a special needs world, people who are NT do not get to meet them/mingle with them/befriend them. Why should it be this way? And what is so wrong with wishing Max could have NT friends, both so he has a range of friends in life (which is always a great thing) and so that when he grows out of the school system he feels comfortable in a NT world?
DeleteThat sounds very unusual--a school with no differently abled children and a neighborhood with only one special needs child
DeleteThe last part about him taking his sister's hand really resonated here. Big hugs Ellen. Hag Sameach.
ReplyDeleteYou too, Julie!
DeleteWe are in a similar situation, as my daughter with multiple needs attend a deaf school. Communicating with kids 'outside' becomes even more difficult. I see how kids react around her and with a communication barrier added to the mix it's nearly impossible. It is sad as she is SO social. However, I can't make others play with her (except her sister, lol) but can help by increasing awareness, which you do SO well! Also- I am so grateful that she has real friendships at school.
ReplyDeleteMax also has good friendships with kids at school, and I'm glad for those.
DeleteOh man, I get this. I have to confess that my biggest problem may be that _I_ don't know what to do with boys Nick's age. After 10 years, I know intuitively how to relate to my son with CP, but have no clue about what typically abled 10-year-old boys do. So I feel intimidated. (Although now that he's moving into his teen years, my intuition seems to be falling down on the job).
ReplyDeleteBest I've been able to come up with is, when Nick's in an inclusive environment, get the leader to "interview" Nick on his interests so the kids at least have a point of entry.
That's a great idea. For us, I've found that getting into a discussion of what kids want to be when they're older is a good ice-breaker, although we do have that conversation piece firefighter hat!
DeleteI was going to make a similar comment to Nisha, in terms of finding kids with similar interests. When you are talking being a fireman or the previous Cars 2, you are likely looking at children who are a little younger than he is, but if they can have fun running around the house putting out fires, why not? The younger kid would have a cool older buddy, and would grow up with a better understanding, perhaps then reaching out better to those with special needs his own age or older. Slow going and not exactly what you're looking for, I realize, but would it be a start? Perhaps the children would have older siblings, and they'd all learn...
ReplyDeleteI know. I've been thinking about that, too, and a kid who is younger is a definite possibility. I still haven't decided what my plan of action is.
DeleteEllen, a small group of parents of children with special needs created Building Buddies: An Online Friendship Toolkit recently for the very reasons you mention. You can find our page on Facebook, where the Toolkit is available to download. We created the guide out of a vision of inclusion, friendship and belonging for our kids. The project came out of the 2014 Arizona Partners in Policymaking training series. We have been asked to present about the Toolkit in a break out session at the national TASH conference. We hope to continue to gain momentum and interest in the Toolkit because it has gathered a great deal of information, ideas and resources in one place specifically related to friendship for children of different abilities.
ReplyDeleteWhat a great resource!!! I just started flipping through it online. I will download and digest. Thanks to you and the other parents for creating this.
DeleteThank you for this excellent post...I think about future friendships for my now six-month-old all the time. Sushi night at Max's house or at a restaurant might be a fun activity.
ReplyDeleteMax would LOVE sushi night! Meredith, your little one has plenty of time to make friends. Enjoy the cuteness right now!
DeleteI read an article once that has always stayed with me - I tried to find it, but cannot. It was about a boy with down syndrome from West Caldwell I believe - he was so high functioning that he was mainstreamed all throughout school and then attended county college - typical friends all the way through. As a young adult he told his parents he wanted to be spending his time with "people like him" - and they had to accept that. For all of his cognitive abilities he was able to express in the end, very clearly, that he wanted to spend his days with people with down syndrome. So maybe Max's comfort zone will always be with people more like him and that's okay....in our case we just wish our child could fit into either the down syndrome population or the autism population but seems to be caught somewhere in the middle - tough place to be.....
ReplyDeletePeggy, your own M may very likely tell you where he wants to be, too, when he grows up, as Max might. Whatever he wants will be fine with me. I just want to have him experience as much friendship variety as he can.
DeleteThis is hard stuff that keeps so many of us parents awake.. I have a son with autism and a son that is " typically " developing, we seem to have the best luck with inclusive play dates with children of all ages that belong to our friends.. We try to set things up to work by centering playdate on things son with ASD likes ie swimming and hamburgers for dinner on Saturday night with a few other families, playground riding bikes and coffee and donuts for parents on a Sunday am. Something for hanukkah party that all can enjoy.. The other kids see our special kids participating in something they like to do and it helps foster a connection.. Try with your neighbors -- You ( just from reading your blog) seem like a warm and loving family that other familes would love to be with !!
ReplyDeleteWe've done the occasional family playdate over the years but, you're right, we could do more. Thank you for that reminder! Other families tend to like us just fine, especially when we shower. He he.
DeleteI have many friends, most of them older or younger than me. I like the diversity.
ReplyDeleteYes, diversity. That's exactly what I want for Max.
DeleteThis is not my area of expertise or experience, so I may be off-base-- but I'm wondering, why pair Max with neurotypical kids who happen to have been born around the same year that he was? He made his first appearance 11 years ago, but who really knows how old he is in "Max years" anyway? (Maybe several ages at once!) I doubt he has enough in common with neurotypical 11-year-olds for spontaneous mutual friendships, even after the initial awkwardness of kids overcoming their unease with someone who looks and sounds a little different has been overcome. I could imagine him having fun in a mixed-age and –activity group, but for one-on-one friends, maybe younger kids would be a more natural fit?
ReplyDeleteAn analogy with his bike: It’s technically not a bicycle, being a three-wheeler. But he zooms around, he decides where to go, he’s completely mastered it, and he experiences the joy and confidence a neurotypical kid would experience on a two-wheeler. Isn’t that better than if you fretted that he’s missing out on the neurotypical 11-year-old biking experience, and put him on a wobbly two-wheeler that required an anxious adult constantly trotting alongside to keep him propped up?
--Phyl
P.S. Hooray for siblings!
Phyl, yes, I think this is a good thing to keep in mind. And I LOVE the bike analogy. Thanks, as always, for your wise words.
DeleteThe last part of the story with Max and Sabrina holding hands...MELT! It is clear that Max knows his sister is a source of both friendship and support. She will probably be instrumental in helping introduce more children to Max as they get older, if she hasn't already!
ReplyDeleteThese days when friends come over, she goes into her room and closes the door!!! But her friends are cool with Max and nice to him.
DeleteHi Ellen, there are two great Jewish organizations that focus on social inclusion programming, all extra-curricular and there are even programs for siblings and parents. They are:
ReplyDeleteFriendship Circle http://www.fcnj.com/ and
Yachad https://www.njcd.org/
I have been involved in both of these organizations personal and professional capacities and they have amazing programming. Feel free to contact me personally if you want to talk to me further about them.
Regards to Max, he's awesome!
Alyssa, thanks. Max has been part of Friendship Circle but the kids who visit him once a week are just that...kids who visit him once a week. Make no mistake, it's a great program but it's limited. I have been looking into Yachad!
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