marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
A thought inspired by conversation on someone else's blog today - but it's a conversation I see come up over and over.

A kid like Charlie, in the US and in some other countries, can easly be slotted into the "not really disabled" social category, because his disability doesn't limit him very much.

This is because he is LEGALLY in the "actually yes really disabled" category, which means he has civil rights protection. And he's medically in the disabled category, which means insurance (or the school district) has to pay for his OT and PT. Therefore if he wants to play sports on a team at a publically-funded school? They will have to let him. Without civil rights protection, the coaches can put him on the bench, permanently. Without OT or PT to develop skills analogous to the two-handed kids, he might not enjoy sports in the first place.

Kids with dyslexia get extra time to take tests. Kids with ADHD or Autism Spectrum Disorders don't get expelled from school for behavioral problems--as long as it's diagnosed and they are put in that protected category and given legally-mandated supports. There's a long (long long) way to go for proper inclusion and access for everybody, but the law mandates that all kids can participate in school and the community. When I was a kid it wasn't like that, and plenty of families had a kid who just stayed home all day, or failed and failed and failed until they dropped out, or went off the rails trying to self-medicate.

The reason our mildly disabled kids can grow up feeling "not disabled" in this country now is because of lawmaking, lobbying, hard work and activism, much of it by their fellow disabled people, not because they are actually what society considers normal. I think it's important to remember that.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
Help me, O flist! I'm wondering if there is a YA book out there that features epilepsy in a cool way--like "I have epilepsy and can also do magic and fly" as opposed to "I have epilepsy and am going to struggle with my self-identity as a disabled person for 140 pages, ultimately making a friend or two and finding acceptance." Not that the latter sort of book is bad, exactly, but it's probably not the right message for the young person I'm thinking of.

Other brain disorders that figure into YA SF/F in a cool way woukd also be good.

Rec me! Thanks in advance.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
So, Charlie is 2 and a half, and is already falling behind on tests! Well, not exactly. His day care/school does the ASQ, which nowadays stands for Ages & Stages questionnaire but I think used to stand for Autism Spectrum Questionnaire? Anyway, it's a thing that parents or teachers fill out every 3 to 6 months or so (less frequently as he gets older) that asks questions about developmental milestones--gross motor, fine motor, verbal, social, etc. I have collected it when it was given and have even filled it in, but have not given it back to the school generally. This is because 1. we have him evaluated by doctors regularly, including at times with that same questionnaire, and we do therapy accordingly 2. It's not necessarily any of the school's goddamn business what his total medical profile is, particularly since we are not (yet) in the land of IEPs and special services, and if we ever are, it will be through our actual school district and not the day care, (which thus far has been very slightly faily about his disability, although great about his medical needs) and 3. (and most important) the ASQ is designed for children with normal morphology.

So this time his teacher did the evaluation--not just for him but for all the students in the class--and came up with "needs follow-up" (i.e. see your doctor about...) on gross motor, fine motor, and verbal. Now, we know he's delayed on verbal; we're in the "wait and see" stage, where he's catching up but might need a little therapy, or might not. So I think it's valid to flag that. For gross motor he mainly shows as "delayed" in things relating to balance; ok, fair enough, but I note there is not an "asymmetrical" option...anyway, ok, yeah, he's only been walking since May so I'd consider him delayed on gross motor, but the doc and the PT think he'll catch up on his own as his confidence grows.

For fine motor, I've always filled in "n/a" for most of the answers and not bothered to tally, because the questions MASSIVELY assume normal morphology. Stuff like "child can pass a small object from hand to hand, yes or no." Well NO of course. And "picks up a cup with both hands." NO. But he picks up a cup with his hand and the end of his short arm, and he tucks things under his short arm to carry them. He does not do really well putting lego bricks together, or scribbling on a piece of paper unless someone holds it for him. These are standard markers of fine motor skills but the question is not "can build a lego tower using only one hand," which is actually the required skill in his case. Some of the questions are less two-handy, like eating with a fork or spoon, but most of them are not.

His teacher went ahead and answered the questions exactly as asked--which is what she's required to do, and she was apologetic about it--so he now is rated with 15 out of 50 on fine motor. I would be happy to have a reliable way to tell if his fine motor skills are good for his age or if he actually is delayed, since he was significantly delayed with hand skills in his first year, and probably continues to be delayed now. But these questions are not the way to figure that out. I don't think the test should be redesigned, mind you, because it's a perfectly fine eval for the majority of kids. But the school should have alternative ways of assessing other kids - or just say, you know, "we skipped the fine motor skills section of this test because it's obviously stupid to ask these questions about Charlie; do you have an OT who could do an eval?"

Which, come to think of it, we do, although he hasn't seen her since he finally learned to walk. Maybe we'll get our doc to refer us for a little milestone testing. In the meantime: rargh! Stupid unhelpful test.

ETA: Since you've kindly read all this rantyness, you deserve a picture:

Charlie playing with his Xmas choo-choo. Mike put velcro sticky pads on the bottom of the remote and on the table, so Charlie can work the lever without having to hold the remote.

marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (binky)
There is a kid in the neighborhood who is just not getting his head around the concept of Charlie.  This kid, who I'll call X, is 6, and asks about Charlie's arm almost every time he sees him, in particular wanting to know if it's going to "grow back."  He's not a starfish, young man.  Every other kid who hangs out on our end of the block is fond of Charlie, asked once or twice about his arm, and now they just want to play with him and say hi. (X is also the kid who asked if Charlie is a "China boy," as I believe I mentioned, but if I didn't, there you go).  So I'm getting a bit irritated with X.

Today we encountered three kids, two of whom predictably went "Charlie! Hi Charlie, say hi!" and smiled at him. The third kid, X, asked about his frickin arm AGAIN! Mike's brother, who hadn't ridden this ride with X yet, started to give the "that's just how God made him" answer (I tend to give the "he was born like that" variant or the "he's just different" one), but I found myself snapping "you've asked that question about a hundred times, X, you need to stop asking."  Then to take the sting out of it, since all three kids were a little startled (I am not usually peppery with kids) I encouraged Charlie to say hi, and I was smiley.

A tiny part of me feels bad, because natural curiosity blah blah blah.  But a much bigger part of me thinks that if you don't understand something after the first couple of times you've asked about it, you need to just shut the hell up about it, even if you are only 6, because DUDE. 
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (charlie-washcloth)
When talking about kids with minor physical disabilities, a lot of able-bodied people--teachers, parents, even doctors--will say they don't consider these kids to be disabled, because they can do basically whatever a not-disabled kid can do.  I'm always uncomfortable with this assertion, because I think it's based on an unspoken assumption that "disabled" means "OMG totally fucked."

According to the World Health Organization

"Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions.
  • An impairment is a problem in body function or structure
  • An activity limitation is a difficulty encountered by an individual in executing a task or action
  • A participation restriction is a problem experienced by an individual in involvement in life situation

Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives."

As someone with an upper body limb-reduction defect, Charlie inarguably has an imparment.  When it comes to activity limitation, the effect of the impairment is very minor; he has to adapt and develop his own way of getting things done, but for the most part he doesn't need help and when he's an adult I don't expect he'll need any help at all.  He will encounter some participation restrictions when it comes to certain sports, artistic pursuits, and musical pursuits, which will either be no big deal or will be a significant factor in his life, depending on his desires and aptitudes.  If he loves piano and wants to play at a very high level, he will be screwed, but if he loves trumpet instead, he'll be fine. Obviously we intend to direct him into activities that will allow him to participate fully instead of having to deal with impossibilities or near-impossibilities.

So he's not particularly limited, but he is disabled. We absolutely think of him  as disabled; we teach him to think of himself as disabled.  Because there's nothing wrong with being disabled.  And because there's a vast community of fellow travelers out there that I want him to get to enjoy and learn from and join with in activism.  If he decides, as he grows up, that he doesn't think of himself that way, I'll respect that, because it's his identity and he ultimately has to be the one to craft it. But I hope it will be just no big deal to him, that he'll be "disabled" the same way he'll be "a White Sox fan"--something he takes for granted and likes about himself.

marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (charlie-animals)
I knew, adopting transracially, that my family would be conspicuous and strangers would ask me a lot of stuff, and tell me a lot of stuff, ranging from opinions to stories of their cousin who adopted a baby who blah blah blah.  Doubly true when parenting a child with a limb difference or other physical difference, as it turns out.  That's all fine, and not surprising.  And I generally enjoy hearing people's stories, as long as they aren't the kind of stories that haunt me.

One kind of story that haunts me? Is any story in which a child comes to serious harm.  So when someone meets Charlie, (who did not lose his arm but rather never had it), and immediately launches into telling me how a child they know came to lose a limb, I am sympathetic but on the inside I am also very much OMG AAAAH Stop Telling Me I Don't Even Know You.  It's only happened a couple of times so far but I am coming to understand that it will go on happening until Charlie is grown up, and will happen to him even more often than it happens to me  (Once he's grown up I assume we'll mainly hear people's tales of adults losing limbs, which do not haunt me like the child ones do, although of course I feel for those folks quite a bit, too).

Of course it's never people who have actually lost a limb themselves who do this.  They just want to pat him on the head and swap prosthetics and adaptation stories.  I think perhaps NOT asking "what happened?" is the secret disability/disability-allies handshake. 
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
Wonder Pets has become a staple TV show in our home, because Charlie looooooves it. And we find it weird and entertaining enough to be able to tolerate watching it with him and singing along. Also, episodes are 15 minutes long, which is about as much TV as we like him to see daily.

The shows involve a team of 3 classroom pets rescuing (usually) baby animals after the class has gone home for the day. They sing a little song about saving the animal. However, the ep we saw yesterday, called "Save the Bullfrog," was about helping an elderly bullfrog who couldn't hop to the water. He wanted to swim with his "grand-poles" but couldn't because his legs wouldn't get him to the water. They modified their little song to say "let's help the bullfrog" instead of "let's save..." and then they went and built him an awesome little wheelchair out of a cut-up log, and then helped him get into it and he wheeled himself to the water and got in to swim, keeping his new wheelchair nearby. THE END. Mobility problem, solved with a mobility device, YAY.

They normally have to solve a problem in the classroom before they fly off in their flyboat (don't ask) to help whoever, and the problem in the classroom has the same solution as the problem of the animal who needs helping. This episode's "classroom problem" was about finding wheels for the flyboat because it needs wheels to go (I said, don't ask!). Also during the credits they show a dog with one of those wheel-carts for his back legs, trotting by the door of the school. Basically the whole episode is "wheels are good!" and the bullfrog's problem isn't presented so much as "his legs don't work" but as "his grandpoles miss him" and "he needs to get to the water." Wheels are the solution.

We did notice that they don't cover how he's going to get out of the water and back into the wheelchair after they leave, but I guess there's only so much they can cover in 15 minutes. :) Anyway it made us happy to see a positive showcase for a mobility device, that treats it as a fun solution to a straightforward problem instead of a very, very sad encumbrance.

For contrast, in the Halloween episode of Ni Hao Kai Lan, Rintoo sprains his ankle and so can't go trick-or-treating (in their apparently crutch-free world) until the kids figure out that they can put wheels on the bed and all go trick-or-treating together on wheels. First they spend 15 minutes going "oh no! you can't go trick-or-treating because you CAN'T WALK! Oh No!" while I yell at the screen.

marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (charlie-chair)
So, here is the overdue update on the plan for Charlie's prosthetic arm.

We met with the nice people at the prosthetic & orthodic department of the Rehabilitation Institute of Chicago.  My sister rehabbed at RIC after her stroke, 35 years ago, and she was able to accomplish a huge amount there, so taking Charlie there was the natural choice.  Also they run a pediatric limb deficiency daylong clinic every few months where the kids can meet each other and see an orthopedist, a prostheticist, a physical therapist, and an occupational therapist all in one go. We'll be doing that in August when the next one happens.   Oh and also, as it turns out, they're a national leader in prosthetics R&D, including bionics (More info here).  So we're excited to be able to get Charlie started with them so early in his life.

Anyway, they said Charlie's a very good candidate for a prosthetic arm, and since he's sitting unassisted and crawling he's definitely ready for one. Since he is lacking the left elbow as well as hand & forearm, the beginner prosthetic arm will have the elbow fixed in the bent position, with a molded hand that has a manually-operated opposable thumb so that he can hold things in it.  It defaults to a closed position so he won't drop stuff.

We've chosen a body-powered arm rather than a myoelectric one--myoelectric (controlled by muscle signals & sensors) is cooler, but more specialized and harder to take care of and possibly harder to use, at first anyway.  The body powered arm will give him the body skills he needs to go in a lot of different directions with prosthetics use when he's an adult. So, once he's gotten used to wearing the arm & the associated harness, and using the hand for some stuff, he'll upgrade to a "voluntary opening" hand with a wired thumb, that will open when he moves his shoulders a particular way in the harness (probably in a year or two?). Once he masters a voluntary/wired hand, he'll be upgraded to a wired elbow as well.

As he gets older, he'll get new molded socket inserts a couple times a year, and a whole new arm mold about once per year.  The hands only come in a few sizes so he won't have too many hand swaps as he grows up.  However, once he's using the adult size arm/wrist mount, he will be able to use an amazing variety of specialty replacement hands.  My favorite is the camera mount.  The basketball hand is also pretty awesome looking: 

Once you let go of the idea of making it look or function like a human hand, all kinds of stuff is possible. 

The coolest thing about this first arm? We said we're not interested in a cosmetic prosthesis for him; we want him to feel his body is whole without (most of) a left arm, and that the prosthetic arm is a really cool tool.  They agreed with this--children who are born with a limb absence don't have the sense of loss that people who lose a limb do. The hand will be caucasian flesh color (it only comes in 3 colors, and that's the closest match to Charlie's skin), but for the rest of the arm they will take any piece of stretchy fabric I care to give them, and laminate it into the arm.  OMG SO COOL!  I have some dinosaur fabric that I think will be perfect.

The plaster casting of his arm will happen on June 10, followed by a couple of fittings and then ongoing physical therapy. YAY arm! Giving a weapon to a 1-year-old baby, possibly not awesome from the POV of the people around him, but overall this is going to be AWESOME.

marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
I'm curious to know how folks on my flist feel about the term "disabled," particularly people who are technically "disabled." 

There's this internet storm underway because the BBC has a host for a children's show who has only one hand.  Google "bbc arm children" and you'll find half a million articles.  Anyway, one of the things that I'm seeing from people, particularly people who are close to someone who has a limb deficiency, is this: "he/she isn't disabled!  he/she can do anything anyone else can do!!! just you watch!!!" 

I have an assortment of people in my family who have disabilities, including my sister (right-side hemiplegia), my mother (assorted geriatric mobility problems), my mother-in-law (severe arthritis),  my husband's cousin-in-law (upper limb deficiency), and my son (upper limb deficiency).  This isn't counting my friends, or people I work with, or people with psychological disabilities, etc etc--(all of whom do count, I'm just not listing).  Anyway, from my perspective, a lot of people have disabilities.

It seems to me that if I tell Charlie "you're not disabled," or "that's not a disability" when he has only half as many hands (and elbows*) as other people, that's 1. stigmatizing "disability" and 2. minimizing any difficulty he has going through life in a world designed for the two-handed.  I don't think it's a tragedy or a big hairy deal that he has a limb deficiency.  I also think it's ok if he has days where he is not an inspiration to all, or fails at some stuff because it's too hard to do without that extra hand or elbow.  Like, he really enjoys music, so we're going to have him take music lessons, but we'll try to steer him toward an instrument that he can play WELL without a second hand.  The whole thing of "there's a lot of piano music written for just one hand!" is great, but it doesn't help you to play the Moonlight Sonata.  I'd rather have him be the kid who plays the trumpet well, full stop, than the kid who amazingly plays piano with only one hand isn't that amazing?  That's me, though; his mileage may vary and I will follow his lead.  Mainly I'm going to try to open as many doors as I can, and let him decide which ones to go through.

Anyway my take is "it's a disability; lots of people have disabilities.  It doesn't have to stop you from having a good time or doing the things that matter to you.  But sometimes it's probably going to be a pain in the ass."   And "yeah, you're disabled, and there's nothing wrong with that."

What do you think?

*a whole lot of folks who only have one hand and do stuff like play major-league baseball have two elbows, which makes everything more manageable.  With an elbow, you can move something toward yourself or cradle something in the crook of your arm, and your prosthetic options are better.  Not that "oh it's horribly sad that Charlie lacks an elbow," just that "no hand and also no elbow" is more challenging that "no hand." 
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (charlie-smile)
[ profile] neutronjockey asked an interesting question over here, and I think I should answer it in a new post, since other folks on my flist are adopting too, and may be interested.

So, here is how we prepared for people's assorted reactions to interracial families and/or disability:

1. First, our social worker had us do a buttload of training including international adoption, interracial adoption, prenatal drug exposure, and some other stuff.  I think we'd racked up 40 hours of training by the time we got Charlie.  There's an online class offered by Adoption Learning Partners called "Conspicuous families" if you don't have an in-person class you can go to.

2. Mike and I both have family members with disabilities; from the time I was 6 years old my (much) older sister has walked with a pronounced limp and has very limited use of her right hand.  So I've seen her answer the "what's wrong with you" question a lot of times.  We also had a family friend who was blind and another who was in a wheelchair, and since I was a child around them I asked all the questions a child does, and learned various things from how they answered (more on that below).

3. I spent a lot of time talking to and learning from my POC friends about racism, white privilege, and what the world feels like for people of color. I also solicited opinions from all my friends, POC or white, about interracial adoption.   And I read a crapload of books and blogs about race and interracial adoption.

4. I grew up good friends with a family that had a mix of bio-kids and interracially-adopted kids, and we all talked about race together from an early age.

5. I got picked on mercilessly when I was a kid, because I looked like one of those kids you can pick on.  I won't elaborate but if you were one of those kids you know what I mean and what some of the likely causes were.

Sooo....from all that I've come up with some rules for how I handle Charlie's conspicuousness, with kids and with adults.

1. I make sure he always looks as cute as possible

2. I make sure he looks well tended--clean clothes, multiple layers, everything matching, etc.  This doesn't have to cost a lot although I'm fortunate to be able to afford some nice things for him.  But I know people who dress their kids entirely in 2d hand stuff and you would never know it.

3. When I introduce him to children, I point out his arm to them before they can notice it for themselves.  Then they aren't startled by it, just fascinated, so they ask some direct questions and maybe point out that they have *both* hands. Then move on to saying how cute he is.  I also do this with adults, if they're going to be around him again.

4. I invite children to touch his arm and I show them the little nubbin on the end that would have been a finger and explain that the arm didn't grow, which reassures them that this won't happen to them.

5. When talking to children, and to some adults, we refer to his future prosthetic arm as his "Robot arm," because robots are cool.  And nowadays, prosthetics are often also robotic.

6. When people come up and peer at him, I always say hi and I generally also say "This is Charlie, say hi, Charlie," and pick up his hand and wave at them. 

7. He is in a large daycare full of a diverse group of children.  There are plenty of downsides to daycare, but daycare kids tend to have strong social skills.

8. We let everydamnbody touch him.

9. We explain what we know about his disability to pretty much everyone who asks.  "it might be a mutation, it might be what they call a 'spontaneous event,' we're doing medical tests to determine if he has any other problems.  But he's doing great, he's a wonderful baby, he sleeps right through the night..." 

The net effect of all of this seems to be that everyone who meets him--friend or stranger--feels comfortable with him very quickly.  The children in the neighborhood really like him and enjoy being around him, partly because they get to pet him and touch him, which gives them a sense of ownership.  (Note: this policy will change as he gets older and starts to care about being touched or not.  But for now it is helping his neighbors to bond with him)  Because I talk directly to strangers who see him, and I tell them his name, they ask me questions about him instead of whispering to each other behind my back.  Also, once they've asked about the ways in which he is unlike other babies they start asking about what he eats, does he have teeth, how does he sleep--they move him into the category of "normal baby" and they pretty much forget about his differences, because their curiosity has been satisfied. I think that people are powerfully curious, more than they are cruel or hostile.

And the main thing is that we're doing everything we can to give him a sense of security and strong sense of self, and a lot of love and affirmation, so that when he encounters someone who thinks there's something wrong with him, his gut will tell him "that person is weird!" instead of internalizing that person's negative stuff. 

For me, the bottom line is that I enjoy being conspicuous, most days, and what I focus on is how we can be conspicuous in the most positive way possible.   I want Charlie to be an ambassador for other kids like him.

It helps that he is the world's cutest baby, of course:

marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Charlie)
1. people who think missing a forearm & hand is not a big deal, just inconvenient, and maybe a even a little cool.

2. people who think missing a forearm & hand is a REALLY BIG FUCKING DEAL, tragic, horrifying, heroic, shocking, OMG.

It's been interesting to discover who falls into each group. My neighbors and in-laws, every last one of 'em, fall into the first category. Even the occasional older-generation racist neighbors, who eye my child sideways at first because he's Chinese, warm right up to him when they discover that he's disabled. Which is odd, but I'll take it. The neighborhood kids are thrilled with him and can't wait til he's old enough to get a robot arm.

I shouldn't be surprised when some people fall into the second category, but I am. I somewhat expect it from people born in some other countries, where discrimination is still the norm. But I'm running into it from people born here, too--people who know disabled folks, have disability in their families, and still just don't fucking get it. Yeah, sure, kids are going to pick on him at school. It'll suck when that happens. But it's not tragic...unless people who meet him keep deciding that it should be.

April 2013

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