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All three of us were born in the USA: Jim on the East coast, me out West, and Charlie inbetween in a city on the Mississippi. Happy 4th of July (if you’re American)—-though this particular holiday isn’t alwyas the easiest for autistic individuals. Fireworks are loud and it seems that every town here in New Jersey has their own special fireworks display, booming and whistling over one’s house. Add the time off from already shorter days of summer school and standing on a hot sidewalk under the hot sun to see floats or marching bands (more loud noises): It’s enough to make one want to forget about why there’s a holiday at all and what the holiday is about—-and even that brings mixed feelings to the parent of a disabled child.
July 4th is meant to celebrate independence, a word that always gives me pause; a word I think about every day.
How independent can and will Charlie be? I more than suspect he’ll need a job coach to help him in his work (assuming he can get a job). He’ll need to live in some sort of supported living community, perhaps with roommates and a careworker or in a group home, and perhaps for some time with us as there’s a shortage of housing for disabled adults here in New Jersey. Charlie struggles to do simple arithmetic using a calculator; he’ll need help handling money and to take care of himself.
Which brings me to a rather personal, but practical, subject.
Fingernails, and toenails.
I cut Charlie’s and the fact that I can do this when he’s awake, without accidentally clipping him on the fingertip, has been a minor triumph. Until Charlie was about 6, I was only able to do this when he asleep. I’d turn on the lights (a bright light; you need to see what you’re doing when attempting a fast fingernail clip on a sleeping child) and strain my shoulders and arms, in an effort to be at the right angle. It was nerve-wracking, to say the least, and completely necessary. A long-nailed child can inflict a painful scratch on himself, on a teacher, on a parent. Charlie just could not sit still to have his nails clipped and attempts to hold onto him made the whole operation worse. The nail cutter—a small tool that portended a big pinch—may well have seemed like something approaching a torture device, on a par with the curved pick at the dentist.
I don’t quite remember how we taught Charlie to sit to have his fingernails and toenails cut. I suspect someone held his other hand or foot, everyone offered smiles and warm praise, and someone provided him with his favorite crackers. Over time, we were able to complete the task with fewer and fewer crackers and now Charlie sits (giggling and wriggling a bit) while I clip, and has told me on occasion that “I need help!”, and shown me a hangnail that he’s pulling at.
It’s a small piece of “independence,” I know. I do think I’ll be able eventually to teach Charlie to do it himself, though maybe rather jaggedly. I have to wonder: Will he really be able to manage the little clipper? Will he remember to do it? To ask for help when he needs it?
And maybe the last question is the main one: How independent are many of us, anyways? My mother-in-law has long feared to do anything on her own; she doesn’t even pick up the phone, but waits for someone else to do it, and rarely ventures outside the house without her husband. My 102-year-old grandmother, Ngin Ngin, has always lived among others, many others; after her children had grown up and moved out and my grandfather, Yeh Yeh, had died in 1975, there were always families newly arrived from China in her house, always elderly women—”old friends,” really distant relatives by marriage—sitting at the table with us. I can’t say that Ngin Ngin was “totally independent”: Not knowing English, or how to read and write any language, she was limited and has lived all of her life (since she came to the US in the 1920′s) in Oakland’s Chinatown.
Maybe it’s not independence we need to be thinking and planning so much for, as about acknowledging how dependent we are on each other, how we need to live in community. I’ve written before about a movie called The Key of G, which
…..follows Gannet, a charismatic 22-year-old with physical and developmental disabilities, as he leaves his mother’s home to share an apartment with a close-knit group of artists and musicians who support him, not only as paid caregivers, but also as friends. Together they create a uniquely successful model of supported living, and a compelling alternative to institutionalized care.
The film—and Gannet most of all—are compelling to watch.
And if the idea of a “uniquely successful model of supported living” that offers a real “alternative to institutionalized care” seems overly idealistic —– remember that it’s July 4th and that, once upon a time, saying that all are “endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness” sounded, indeed, idealistic and rather impossible.
Just as “cutting Charlie’s fingernails while he’s wide awake” once did.
1394 days ago
[...] yet learned to call me on a cell phone (or to keep it hidden from the camp counselor). The road to independence isn’t easy for a child, or for a parent. Tags: asd, asperger, autism, autism blog, camp, [...]
1407 days ago
[...] that tells the whole story, Meanwhile, Kristina Chew at Autism Vox asks the hard, but essential, questions about “independence” that will shape her son’s future. On the subject of childhood, Disability Nation takes a [...]
We’re all human. We need to take care of each other.
Also it took me years before i could clip the fingersnails on my right hand because my left hand is slightly atrophied from surgery I had on it.
Dang. If they locked people up for not agreeing with Bush not only would I be in jail but millions of other people…
They’d have to have a huge dungeon or something…. Since his approval rating is 28%. Slightly ot.
Because diagnosis was not on the table when I was a child–still isn’t, if you ask my mother–I was held to a pretty high standard of independence. Of course, Charlie and I are pretty different in our skillsets (he’s much better at swimming and cello, for one!), and it’s only in my early 20s that I’m coming to the realization that Asperger’s might be a diagnostic fit for me (or I might be close to but not on the spectrum). I do think that my mom’s incessant push for me to be independent has been a good thing overall. I did well in public school (once she stopped fearing for my lack of friends) and pushed myself through undergraduate in 3 years. I was able to move, alone, to Australia, and do postgraduate there, and move back to the US to live with friends.
Yes, sometimes I was forgetful (it took me 5 grocery trips in 2 days to remember to buy milk, once), or anxious (I’ve definitely had more hand gestures/flapping since moving to Melbourne), or lost track of responsibilities (I’m still working on my dissertation, 6 months after moving back to the US). Yes, I’m finding it very difficult to find a job, because I don’t have the skill to present myself well on paper (I’m told I’m charming in person, even if I don’t make eye-contact well), and I’m afraid my peace corps application will go nowhere because I was so harassed at the VA hospital in DC. But I remember to shower, and brush my teeth, and pay my bills on time. I guess it’s all okay in the end.
Regan, I’m sure you are right, “independence” can mean different things to different people.
When I think of “interdependence”, it is because Alex will probably always be a little more dependent in some ways than many people. I want to help him learn to problem solve, so he can identify a problem, think about possible different solutions and which one would be best for him, and then learn who to ask for help, so that he is more in control of his “interdependence” upon others. A lot of people are physically unable to do certain things for themselves, but they can ask the right person to do things for them, giving the person control over areas in their life that they can’t actually do independently. I am teaching him who the right people are to help him with certain things. As he grows older, I want to teach him how to discern if someone is trying to take advantage of him or is taking his choices away from him when it is his right to make those choices.
Maybe it is that I don’t really like the negative way “dependence” is used a lot, and “interdependence” to me means the person has more control over themselves while still needing others more than an average person in society. Maybe it is that in the USA, “dependence” has a negative connotation with someone else being in control, at least, from my perspective as a physician.
When I lived in Austria, it was so different, people there are much more connected to their families and social network, from childhood, and the norm is more multi-generational families in the same house, and the elderly or differently abled are treated more as part of the family with something to contribute, and dependence is not seen so negatively. They don’t warehouse people like I see here. They are more integrated into society from what I could see. And it is more accepted.
1415 days ago
[...] Fourth of July fireworks have never been a big deal until last Friday night. The rain was coming down as we drove to a firemen’s carnival in a certain central Jersey town and at first Jim and I figured we should turn around. We asked Charlie if he’d like to go to his favorite hamburger place and he said, [...]
I wonder if the use of “independence” may be a subjective one. I don’t use it to imply that Eleanor is less valued if she does not gain independence in some things compared to someone else, or that she needs to demonstrate perfect independence and performance at all times.
However, an issue for me in dependency is not that garden-variety interpersonal relationship of give-and-take and “lean on me”, but the kind of dependency that sets someone up to be in a position of relative powerlessness in potentially not being given choices and decisionmaking in vocation and leisure, and in some situations of residential care, the basics of what to eat, wear, play, privacy v. company, when to sleep, etc.
No one has perfect liberty and control at all times, nor do I think that is necessarily optimum, but I feel development of independence gives one more choices and options. Interdependence is a good goal, but I also think that it is going to be rely on the specific circumstances of the relationship.
1416 days ago
[...] always need someone to meet his bus and supervise him—this is one area that he can only so independent [...]
Instead of “independence” how about “interdependence”?
I kind of feel like we are all dependent upon other people for all sorts of things in our lives, no matter who we are, so needing a little more help with things is a part of society. No one is truly “independent”, we need farmers and truck drivers and grocers to get our food, we need health professionals at various points in our lives, we need bankers, we really need everyone, are dependent on everyone to some extent.
My son already is “interdependent”! And he continues to grow and learn more every day!
Like I emailed you, I smile every time I drive past the new group home down the road from us! A little place for “interdependence”, my son may live there someday!
As for nail clipping, we have been lucky there, as well as with tooth brushing and haircutting. We started these routines when the kids were very young, using appropriate supports and finding a wonderful hair stylist who’s son is also autistic, so she doles out the smarties or skittles and talks him through it. Nails get clipped in the bathtub. No fuss, been doing it since he was a baby. Tooth brushing and dental visits since getting teeth in, our dentist has a whole desensitization process, this week he allowed the dentist to scrape off the plaque and polish his teeth! I started using a small rotating toothbrush for him 6 months ago and he is used to it now! Small steps!
Thank you for sharing this. It is beautiful.
We don’t do fireworks; I can’t imagine what would happen if I tried to keep them up late enough to see any. they are in bed by 7:30 or so and asleep by 8:30. Mostly. K is also still afraid of the vacuum so I don’t know how fire works would be. On the plus side, once they are asleep they will sleep through ANYTHING, eg: smoke detector, ambulance/fire truck, tornado siren. Keep in mind we live about 150 ft from the siren and the fire house!
A thoughtful post on this topic at the Disability Studies blog; post is entiteld Independence, too much of a good thing……:
“beauty and cohesiveness”—-”being cared for and caring for another”—what it’s all about.
Charlie likes the lights and colors—-we’ve watched them from afar (once some friends had a house on a hill and a great view from the backyard) and also while in our car (not the best for views but you can make a quick getaway as needed…..)
Kind of a shift, but what do other folks do for fireworks, or do them at all?
We have an older daughter and a slew of neighborhood families running DIY firework displays, so even if we wanted to opt out, we’d have to go elsewhere to do so.
For years Eleanor was terrified by the bang and the boom, but we tried to play it cool ourselves and a couple of years ago sparklers and those little things that pop when you throw them caught her interest, and last year, she took the whole thing pretty sanguinely and even seemed a little disappointed when the last firework fizzled out.
(I have no idea how tonight will be, but I guess we’ll find out in a few hours.)
We are still hard at work on figuring out how to use spoons around here! Nail-clipping is in the very distant future (but you never know!)
I loved the model for living shown in the movie “Key of G”. Especially the fact that all his roommates seemed to be artists or musicians. What a rich living experience for him.
I am not a crystal ball, so I have to try to help Eleanor learn to be as independently skilled as I can, let her try many things, take care not to inadvertently make her more dependent on me than she needs to be, accept what I need to learn to accept and figure out where to go next.
She is much more independent and a young lady already than others prognosticated, but not enough to navigate the world on her own (partially because she’s still young, but really, very few people are, especially in these hectic and complicated days, and that may be one of the issues. I sometimes think that everyone is increasingly expected to be multi-tasking Renaissance folk to be really independent in the face of the rapid paced change and increasing demand).
We did the nails asleep and then bit the bullet and did them awake, now she brings me the box and asks for help (poor man’s manicure), and I asked her the other day, “Do you want to learn how to do this?” “Yes.” So we’re working on that now.
Happy Independence Day.
@hammie, do I get the sense that you’re doing a lot of laundry and have soap all around? Mumnesia is rampant here…..
@Rebecca, and intolerance seems to be running at least a bit rampant in some settings one would hope for acceptance! we have gotten haircuts down with Charlie—my husband’s project, tears and uneven haircuts but Charlie sits in his own in the chair now! and rubs at his head as the hair comes off.
@Autismville, things that seemed huge and impossible yesterday can become routine, just when one isn’t looking…
Nails are tough, but haircuts are full out war!!! We joke that L and K get “quarterly” cuts from mom with a clippers. They see my husb get his cut every month as I also cut his. I have gotten pretty good and can go fast, but with all the wiggling and screaming it takes about 15 min or until I decide its close enough and give up. Cookies and juice and M and M’s are a must.
Also have been thinking about Independence Day and tolerance of differences more and more. Some of the earliest settlers came because their previous homes were intolerant of how they lived, religion, politics etc. They came so they could live as they were. Of course almost as soon as they arrived they started being intolerant of Natives already here. It has been a constant struggle throughout our history and it won’t end any time soon.
Every day we read about autistics being discriminated against in the workplace, air planes, schools, etc. I hope someday America can actually be as tolerant and accepting as we like to think we are.
I am able to do Matt’s fingernails and the toenails. He will hold and squeeze the Aveeno lotion while I do toenails.
Nick has a harder time, probably because he can verbalize and I am trying to get him to do his own.
The issues with Matt are haircut, but that is getting easier but looks like a Mom cut and the brushing teeth. Nick likes the barber and picks out his own toothbrush and likes to use the ACT rinse. He does not really brush his hair correctly, and luckily he is homeschooled so not really an issue.
Jack may very well be dependent on others for the rest of his life. He certainly is now. Our family loves and nurtures him … probably too much!
I still can’t wish that on him for the rest of his life. One of the best feelings in the world is navigating the world independently. I hope and dream Jack will have that experience one day.