Mildly disabled children

[Caroline]

My daughter is away at Deerwander (the OPC youth camp) this week, and her main concern about going was that people might (with every good intention) press her to overextend herself physically. I have no reason to believe that they actually have done this, and I sent a letter with her advising the counselors to let my daughter rest as needed and not to encourage her to do things that require good balance. My daughter has Ehlers Danlos Syndrome, and while she looks normal, she actually has serious problem with her joints and impaired balance.

My daughters worries and conversations with her about her difficulties made me think about something:

Finding summer activities for my daughters (both have EDS) is even more challenging than for my son who is autistic. There are summer programs for seriously disabled children, and there are programs for normal children. What there is not are programs that are for children who have EDS, juvenile rheumatoid arthritis (which a friend's teenage daughter was recently diagnosed with), etc. I know of three disabled children just in my small circle of friends who have difficulty participating in AWANA or other youth activities because they end up sitting on the sidelines watching the other children play games and have fun. Or leaders who mean well but don't understand will keep yelling at them to 'get going' or 'try harder', etc. They usually end up dropping out of activities and then they are kind of lonely. (My daughter has this difficulty). I'm hoping that Deerwander will work out well for my daughter, but to be honest, I don't have high hopes about it. I truly believe that the pastors overseeing it are good-hearted men who will do their best with my daughter (I know several of them personally), but when you are running a camp with 60+ kids, you have to plan activities that are good for the majority, not the special few.

I wonder (and this is very early in the 'just wondering' stage) whether it might be helpful to organize something for kids who are not so disabled that they belong in special ed, but too disabled to be 'normal.' It might be helpful even for them to have advice on understanding chronic pain in terms of Christian faith, etc. But I wonder how common the problem is and whether some special event (or even online blog or whatever) might be helpful.

Thoughts?

 

[Kim G]

I have often wondered the same thing. My son's sensory processing disorder is not so severe that he cannot function. But he functions differently, thinks differently, has poor coordination, has anxiety, hearing and vision difficulties (but not deaf or blind--just processing issues), and most people, even doctors, look at me like I'm crazy when I discuss it because he looks like a big, strong, healthy boy.

I like to say that he's not a "special needs" child but a "high needs" child. And it breaks my heart when I send him to his class at church and he goes into a corner to play by himself because he's intimidated by adults and rowdy children, and sometimes no one bothers to get down on his level and draw him into conversation and play. I wish there were a group of people that understood him that I could get together with on occasion.

 

[Jack K]

It sounds like what you need is a "low impact" camp. Rather than label it a camp for kids with physical difficulties (and thus label the kids, too), call it a camp for any kid who wants less emphasis on rough play and closer supervision of active times. Camp staff would be aware of the unique physical issues of each child and not irked by having to adjust things to fit a particular kid. This sort of camp sounds like it would have been a good option this summer for my own daughter, who is experiencing leg pain when she runs due to growth issues.

I do see some difficulties, though. Such a camp would require more staff than the typical camp does. It might also attract kids with a very wide range of issues, including those whose trouble with physical activities is more emotional and social than physical. These are not necessarily the kids every parent always wants their own kid to hang out with, unless there's close and wise supervision. I think it would take a very skilled director aided by a mature and attentive staff, and no small amount of money, to pull off.

 

[Caroline]

Very true, Jack. I was thinking about that today... One of the difficulties of VBS is that parents tend to unload problem children who have been kicked out of every other camp on the church. I would imagine that there would be that tendency also in a low-impact (I like that word) group. That makes it hard for kids who are really there to learn when someone is disruptive and completely obstinate. I would imagine that anything special-needs oriented would draw troubled kids as well as merely ones with joint pain--probably even more than VBS does. I wonder whether there would be any practical way of screening out severe behavioral problems, but that may be easier said than done.

I don't even think a low-impact group if it contained people like my daughter and her two friends would require more supervision. In fact, they tend to be so low energy that they are the least likely kids to get into trouble. Even if they have a mischievous plot, they wouldn't be up to carrying it out, if you see what I mean. They knit and read and so on.

But I do think it would require more medical staff. We've got arthritis meds, pain meds, and diabetes meds all in the group of kids I am thinking of. And separating out kids with emotional and social issues that could not be easily managed and would take over the camp (and I've seen such problems at VBS) from kids with physical difficulties that require a little rest and medication here and there may be impossible.

Kim, I'm sorry to hear about your son's loneliness--and I do understand how sad that is as a parent to see a kid consistently left out--not because the other kids are cruel so much as because the other kids can handle more activity. I wish there was a solution to this. My youngest daughter tried to join soccer last year, but we pulled her out after the first two games. My husband said he just couldn't watch it anymore. She was trying so hard and all the other kids were yelling at her because she couldn't keep up and they were losing points because of her. But she is just the sweetest kid and loves to be around other people. I hope your son is able to find other children who can slow down for him.

I know that mainstreaming was all the fashion for a while, and still is to some extent, and there were all these inspiring stories about disabled kids put in with normal kids and then finding that they could do amazing things. But the truth is that it rarely works out like that. Mostly, the disabled kids just wander around the edges and wonder why they came...

 

[jwithnell]

Caroline, I think that's a great idea. Our son Samuel is considered high-functioning on the autism spectrum and really doesn't fit in well with any group -- he needs more patience than a lot of kids, but he's not obviously impaired in any way.

Our presbytery has a camp facility in western Virginia. I also know someone who is finishing his dissertation on the image of God in special needs children. I wonder if something could be pulled together that would offer some fun for the kids and encouragement for the parents?

 

[Caroline]

That sounds intriguing about the camp facility. I actually have a son who is autistic as well. I think he would be classified more as moderate on the spectrum, but he doesn't really have behavioral problem. He's a cheerful, upbeat kid, and it is one of his big disappointments in life that he cannot play sports with the normal teen boys. He just doesn't understand games that complex. I'd imagine your son's challenges are probably similar. The desire for social interaction is there, but they are just enough behind everyone else that it makes things problematic.

My daughter came home from the Deerwander camp with mixed reactions, as I more or less expected. She enjoyed some aspects very much, but she gets a little teary-eyed when she says she spent a lot of time by herself watching other kids play volleyball and ultimate Frisbee. She says she found a comfortable spot where two trees were growing close together and formed a sort of comfortable 'chair' and she would watch everyone. She didn't really complain, but she did say she felt like a fifth wheel much of the time. I think that is pretty normal for someone with a mild disability though.

I would really love to talk to someone who was doing his dissertation on the image of God in special needs children. That sounds like a fascinating topic. I'll run the idea of a camp by some people around here. I tend to be pessimistic and doubt anything will come of it, but it would be so lovely if it did.

 

[Caroline]

I'm not over-sharing at this point (but really, what are internet forums for if not oversharing?) My daughter came back saying she wanted to write a book about what it was like to be a teenager with a disability. She said she thought it might help some other kids not feel so alone. I'll paste what she has written so far--I helped her with some of the wording, but she has taken the lead on it. She already even has the cover imagined out. I actually think it shows promise.

This is it so far (which is not even a full chapter yet, but she has only been working on it for one day):
_____________________________________________

Doctors are often fond of reminding one another of an old aphorism: When you hear hoofbeats, think of horses not zebras. They mean that most people have common problems—a sneeze is probably due to allergies or a cold, not hyper-achoo-osis (or whatever fancy medical name might be invented for some extremely rare sneezing condition). Medical school interns who spent four years memorizing every medical disorder known to mankind tend to want to apply all of that obscure knowledge. They think they see hyper-achoo-osis lurking behind every sniffle and snort. The proverb reminds them that they are unlikely to ever see unusual diseases in their medical practice. They will treat migraines, colds, and high blood pressure. They will x-ray stubbed toes. They will diagnose obesity among patients who suck in their stomachs on the exam room scale as if that really helps. They will explain to some overprotective mother for the fifteenth time that little Ethan’s pimple is just a pimple. But they will probably never ever discover anything that would make headlines in a medical journal. Just plain old horses here, folks, no zebras.

Hello, my friends. My name is Kaylee Weerstra, and I am a zebra. Of course, I am not a literal four-footed beast. I do not prance around a field munching grass like the humbled Nebuchadnezzar. I have a rare medical disorder—Ehlers-Danlos Syndrome (often abbreviated “EDS”).
If you don’t know what Ehlers-Danlos Syndrome is, you shouldn’t feel stupid about it. Most doctors don’t even know what it is.
When I see a new doctor, the visit always begins so well. I don’t look sick, and when I’m sitting on an exam table, you can’t even tell that my feet are tilted at a slightly odd angle. So the doctor just starts rolling through his usual list of questions.
“Kaylee, how old are you?”
“I’m fourteen.”
“What grade are you in?”
“I’m going into ninth.”
“Do you have any allergies?”
“I’m allergic to penicillin.”
“Penicillin… uh, huh… okay. Do you ever have migraines?”
“No.”
“Stomach problems? Nausea? Vomiting?”
“Nope.”
We are just sailing along. For one brilliant moment, he seems so happy. I’m just a normal teen girl in for a physical. One allergy, no headaches, no barfing. He has nearly got it all wrapped up.
“Are you going to play sports this year?” he asks.
Ah, there it is. Whatever form it takes, I can recognize it: the question that will change the tone of this whole visit. Brilliant moment over.
“I can’t play sports,” I say. “I have Ehlers Danlos Syndrome.”
Doctors react in different ways to this news. But what they never, ever say is, “Oh, right, Ehlers Danlos Syndrome. I know all about that.” No, not at all. They freeze and look panic-stricken. They stare at the ceiling thoughtfully for a moment, mentally sorting through medical school diagnoses lists that they had disremembered after someone told them about the horses and the zebras. Sometimes, a doctor will even excuse himself abruptly, claiming that he left some important paper in his office.
“He’s going to google it,” my mother informs me. She has had Ehlers Danlos Syndrome all her life. She knows how it is.

If the doctors never know what Ehlers Danlos Syndrome is, then I suppose you don’t either. Don’t worry. I won’t make you google it.
Ehlers Danlos Syndrome is a connective tissue disorder. Connective tissue is the stuff that holds your body together—the glue, so to speak. There is connective tissue in your heart, in the walls of your arteries and veins, between all your bones, and many, many other places. When you have a connective tissue disorder, it can cause all kinds of problems. Some parts of my body are more affected than others. I don’t hear very well, and I tend to stutter when I talk. Occasionally, I faint because my blood pressure drops too low. Those are relatively minor issues. The BIG problem, the one that makes day to day life a challenge, is my joints.
Describing the problem with my joints is not easy, partly because my joints have always been this way. I look at teenagers playing ultimate Frisbee in the park and wonder how anyone has that kind of energy and coordination.
I am told that my connective tissue is too stretchy, and so my joints are loose and wobbly. My muscles have to work just to hold my bones together. Everything is harder for someone with EDS, they say. Just standing up is a challenge as muscles struggle to hold wobbly bones in place.
In practice, this means that I am slow at everything I do. Standing up is difficult. When I walk, every step is hard. Running is nearly impossible. Climbing is dangerous because my balance isn’t good. I’m terrified of heights because I’m always on the edge of falling.
Pain is a constant presence in my life. My ankles hurt. My knees hurt, my shoulders hurt, my hands hurt. I sound like an eighty-year-old woman complaining about her rheumatism, I know. I often feel like an eighty-year-old woman. Well, actually, I feel like a teenager who was built with spare parts—a young girl’s pretty face and an old woman’s achy bones.

People usually do not think of pain and disability as teenage problems. Teenage girls have pimple problems. They have problems keeping their mascara from running. They have problems choosing the right dress to wear on a date. In other words, the overwhelming perception of the general population (even in the Christian church) is that teenagers do not have real problems. They do not need special help. No one thinks of explaining to a teenager about the sovereignty of God in trials. What trials could a fourteen-year-old possibly have?
Yet pain and disability are more common among the teenage population than most people imagine. Each case may be unusual in itself. Each young person with a chronic medical condition may be a zebra, but viewed together as a whole, they comprise a whole herd of zebras—teenagers with diabetes, juvenile arthritis, lyme disease, muscular dystrophy, and other such problems. In any church of moderate size, there is likely to be at least one young person struggling with chronic illness. In my own church of less than 100 people, there are three.
_____________________________________________________

It drops off suddenly, of course, because that is as far as she got before saying she was tired and needed to lay down for a bit. But I thought it was touching. She said it was okay for me to post it. I think she was excited about the possibility of a camp for the mildly disabled and wondered whether posting it might incline people that direction. I'm not sure what I'd do with her writing if she finishes it--it's not exactly the curriculum that I normally publish. But I do like it (I'm her mother--I think everything she does is awesome. heh.)

 

[a mere housewife]

Caroline, it is objectively awesome. Please give Kaylee a hug from me.

 

[py3ak]

Kaylee is a good writer - no surprise, I suppose, considering her descent.

 

[jwithnell]

What a wonderful daughter you have! I'd be willing to bet she could sell a completed work through Amazon. I wonder if a piece about the length she's already written would work in New Horizons?

 

[jogri17]

Don't know your daughter, but she sounds awesome. Just one idea, while religious Youth camps are all and good, given they tend to plan them around the old fashioned activities. I really appreciated growing up (in a non-christian family) and going to secular children camps which put an emphasis on an activity that interested me. Niche Camps are really cool. One thing which I think is really cool is that there are camps designed to teach girls how to code (computer code that is), or youth web design, or writing camps, or photography camps. Depending on a few things, perhaps poking her interests in some of these is not a bad idea for the future.

BTW, if she want help publishing for kindle, I'd be glad to help her format documents and get it published for kindle.

 

[Semper Fidelis]

My son is on the Autism spectrum and can play with others but has some difficulty in social interactions that we're working on. I think kids with special needs is pretty common in any given community. As one example, the Tae Kwan Do studio we take our oldest too is very skilled at dealing with kids with all sorts of disabilities. They even have a class where Autistic and Down Syndrome kids can participate and earn belts. In a County with probably just over 100,000 that class probably has over 100 students. It's a tremendous outreach to consider your idea.

 

[Jack K]

Okay, I've managed professional journalists. I've taught writing to high school students. And I must say: that would be very good writing even coming from an adult. Coming from a 14-year-old, it is supurb. I don't believe I've seen another ninth grader who's that gifted.

 

[Caroline]

Well, to be completely honest, we worked on the phrasing together--so I don't think it would have sounded quite so sharp if she had done it alone (but then, it wouldn't have sounded quite so sharp if I had done it alone either--it was very much a joint effort at the wording). She would say what she wanted to say in the next paragraph and then give a starting sentence, and then I'd say, "How about..." and then she'd say, "Well, no, it sounds better like..." etc. until we settled on something we both agreed sounded good. But that is pretty much business as usual for us. As a homeschooled kid, she is constantly subjected to me rushing in from my writing and saying, "Okay, I've got three paragraphs you need to listen to! They don't sound right to me, and I need a second opinion!"

But she had this one pretty well planned out in her head. She wants to talk about ways that disability is harmful (especially in social isolation) and ways that it is helpful (she thinks it makes her more contemplative and meditative and less rushed in life, and she says she thinks that's why little kids always love her so much--she always has a trail of little children following her around everywhere, as they seem naturally drawn to her--and so she sees it as a blessing in some ways, although that is often hard to explain to others). She thinks church leaders ought to be encouraged to see teens more individually (with their own individual challenges in life) and less as a collective unit, and that addressing teen temptations goes beyond sexual temptation in dating, peer pressure, etc, and includes some more adult problems, like trusting God in illness and so on. She thinks that churches often focus a lot on visiting the elderly but don't give enough thought to visitation of younger people who are ill. She thinks people tend to treat it as though they are just waiting for young people to get better--like they have the flu or something, rather than as a long-term problem. Not that it is malicious at all, but just overlooked in the bustle of church life and the general attitude that young people are healthy and that only the elderly need special care.

But she also wanted to include something about how disabled teens can minister to other people. She thinks they often feel useless because every time they are invited to 'teen things,' they end up on the sidelines and feel like they can't do anything. So she wants to come up with a list of things disabled teens can do for the church. So (this is hijacking my own thread a bit), but if you have ideas in that regard, feel free to say.

Rich, I love the Tae Kwon Do class for autistic kids. My son has long begged to be involved in Karate, but I couldn't, partly for financial reasons, and partly just knowing that he would end up not able to follow along with much.

In regard to a camp--I wonder if a parent/child camp would be of much help. I mean, a camp that was for whole families who have disabled kids. That would take some of the intimidation factor out of managing it, because parents would be along to handle meds and so on. Besides, parents of kids with disabilities might enjoy the fellowship for themselves. I know I would. Of course, it's difficult for parents to take time off work, etc, so maybe that would be difficult--but it could even be just three days. It's a challenge to get disabled kids to a camp anyway (can't really arrange rides for them usually), and I doubt parents would want to drive from New York to Virginia (hypothetically) and then turn around and go home and return three days later to pick up their kid. At the point at which you drive that far, you may as well hang out for a few days.... Still just thinking... but I should sail this one past our Presbytery and see if any of them get on board with it. I'm sure it's one of those easier-said-than-done things, but I suppose it wouldn't hurt to ask...

 

[Caroline]

PS By the way, thanks for the encouragement for my daughter. I will tell her of the positive feedback. I think she will be thrilled. She was nervous about me posting her story. I think she wasn't sure it was really any good.

 

[JoannaV]

Great job Kaylee!!