The Meaning of Independence
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.
Tags: aging, asd, asperger, autism, autism blog, disabilities blog, disability, Family, family blog, independence, july 4th, key of g, Parenting, pdd-nos, philadelphia, supported living
30 opinions for The Meaning of Independence
Independence and Dependence « What Sorts of People
Jul 4, 2008 at 3:38 am
[…] July 4, 2008 — kristina The 4th of July holiday in the US gets me thinking about what independence means, and the importance—the necessary—of acknowledging how much we need each other. […]
hammie
Jul 4, 2008 at 7:09 am
Happy Independence Day!
While I prefer not to think about the future too much (see http://hammie-hammiesays.blogspot.com/2008/01/one-small-bite-of-cookie.html)
I do like the idea of taking time to remember how difficult something WAS in the past, and to celebrate how it is now easy.
Too often we move on when we get over a tricky stage, such as “Training for No 2’s”, and just forget about it, Mumnesia I call it.
We obviously evolved that way to protect our young, kicking them out of the cave for smearing would not work when there were predators around. So we forget about it and love them anyway.
But ever so often we should pause, and smell the clean laundry!
xx
farmwifetwo
Jul 4, 2008 at 8:01 am
That concept of “community living” is in the progress of being implemented here. We got information on it a year or so ago from our FSW. They do have group homes but they are also trying other models.
It’s not an issue today, but there will be lots to think about when little boy is older. Eldest will be fine.
S.
Rose
Jul 4, 2008 at 8:24 am
We all are dependent on others. I never really saw this until I worked in an Orthopedically Impaired classroom, where the kids were dependent on others for their very lifes (feeding, bathing, they had no verbal abilities to even control it in a manner.)
Deborah Webb
Jul 4, 2008 at 8:40 am
I was diagnosed as having Aspergers March of this year, and I am 55 years of age. Life has not been easy. Most of the time, I have been treated unfairly by employers, the most recent employment before the one I have now (at an Independent Living Center). Before my present job, I was working for the state of Kansas. The Department Director of the city office I was in decided I was “too old, too ugly, too short, too fat,” and told my supervisor to get “rid” of me in whatever way it took to sidestep antidiscrimination laws. My adverse job evaluation was full of defamation. (Later, the psychologist who diagnosed me used the job evaluation as a basis of his diagnosis, and refused to believe me when I told him the evaluation was full of lies). I am getting very tired of people not believing me when I stand up for myself. And no, I have not been a liar to the point where people refuse to believe me. It is because I am “different.” And yes, the state fired me and put me in their blacklist file, meaning that if I should ever interview for a state job with that agency again, I will be removed from the interviewing table by security. During my employment with the state of Kansas, I did NOTHING illegal, NOTHING unethical, NOTHING untruthful. Other people’s reasons for inflicting this injustice upon me was essentially to punish me for being born with a disability, if I was. And yes, I was replaced with a 25 year old pretty, tall, slender cute chic the director can fawn over.
Because I was bullied by my supervisor in being constantly criticized and blamed for things I didn’t say or do, and I considered myself having been emotionally abused, I filed a report against her with the state adult protection service, and they refused to investigate my case because this state’s APS is with the same agency my supervisor works for, and they won’t investigate their own people. I did not file a discrimination complaint because I felt the state human rights commission would take favor with a state agency because it was a state agency, even though it is a very provable fact that I was replaced with someone much younger and nondisabled.
If the treatment I received is no different in most other states, we are not much further than the time in history when this country sterilized people with disabilities or even people believed to have disabilities. We did not get our ideas from Hitler, Hitler got his ideas from this country’s treatment of people with disabilities.
I have a four-year degree with a 2.8 average I earned during a time just before grade inflation started. I figure my 2.8 corrected for grade inflation is good for a 3.1. I had to work for every last tenth of a GPA point, where those who graduated a decade later, did not have to work hard at all to get a 3.0 or higher. All they had to do was show up in class. Yet, I have to compete against these people for jobs, and employers refuse to take grade inflation into consideration. At college, I was treated as an outcast because people knew something was “wrong” with me, but couldn’t figure out what it was, so I was treated with hostility and suspicion.
It has not been easy for me to keep jobs in the past. I knew a lot of it has been discrimination. After I lost the state job, my oldest sister was pretty sure that I was washed up for jobs for all time. She wanted me to get some diagnosis supposedly to get my state job back or a job. It was really to justify her in forcing me to either allow her to be my guardian and payee or being forced into an institution. I think she forgot that a payee has to justify every expenditure, and show that they are not spending their ward’s money on themselves. My sister is after my share of inheritance. My Mom is my only living parent, and she acts like it is all my fault that I was born with Asperger’s, and that I did it to annoy her and my oldest sister. My sister wants to give my share of inheritance to her kids instead of it going to me, because her reasoning is “What can a defective person do with $100,000? The fact is the “defective person” my oldest sister wants to deny the inheritance outperformed her in school. Because of necessity, I have learned to live on very little. I have learned how to save my money. My oldest sister, the one who wants to be my guardian, is married to a very successful businessman, and they go on exotic trips five times a year. I have not had a vacation that took me very far from this state since 2002.
I know that if my sister had to save, scrimp, and do without like I have had to do, she would scream and just lose it. Yet, she wants to give my inheritance to her kids.
One married a very rich man, the other, a male, is about to marry into a prominent New York family. My sister wants to deny me my inheritance and throw me into a nursing home, and forget I was ever a member of the family for the “crime” of having been born with a disability, so I am the family “disgrace.” The clincher is:
I got another job very soon after losing my job with the state of Kansas, and I am taking home about $200 more a month than my state job. I am not going to tell my sister or my Mom just how well I am doing, or they might try to ruin it for me. Also, I work for an independent living center that advocates for people with disabilities. I do Home and Community Based assessments for physical disability waivers, and carry a case load that averages about 35 cases. I have done this before. I am familiar with the ways people with disabilities are taken advantage of in society and in the workplace. Due to laws in place in most states regarding exploitation of people with disabilities and the elderly, I will use that, if I have to should my sister try to force me to allow her to become my guardian. You can better believe I am going to fight for my rights and defend myself. My sister says to “give it up,” since I cannot afford as good a lawyer as she can. If she thinks I am going to “surrender” to her, she does not know her “little sister.”
Axis of Evil in Education « Where’s the Sun?
Jul 4, 2008 at 8:53 am
[…] limitations and abilities all too well. As such we also understand that for our children independence at times must also be filtered with much needed support from others. At the same time putting […]
RG
Jul 4, 2008 at 8:58 am
My son has Asperger’s. We used to have a hard time cutting his nails. I did it in his sleep, then when he was awake and now he does it himself but uses the large toe nail clippers because they are easier to manipulate. I usually have to remind him to do it but there’s hope because recently I stopped reminding him to brush his teeth and after he let them go for five days he finally did it himself. Even though I cringed the whole week (and I’m sure any dentists who are reading this are too) he was beaming with pride when he finally brushed them and showed me how clean they were and told me he remembered!
Deborah Webb
Jul 4, 2008 at 9:00 am
Oh yes, one more thing. I just wrote a long statement about my experiences throughout my life due to my recently diagnosed Asperger’s. I do NOT have a criminal history. My record is clean. I have not even done so much as a petty, unrecorded theft. So, for the state to put me on their blacklist is incriminalization on top of the justice of being lied about in my evaluation. I guess blacklisting is OK so long as the state itself does it to people whom they consider “unworthy.” Otherwise, blacklisting is a level three misdemeanor in this state punishable by fine and/or imprisonment. But the state can violate its own blacklisting laws if the person on the receiving end is not just perfect like those judging that person think they are. I find it really irksome that so many nondisabled people think they are perfect just because they have not received any diagnosis that they are imperfect in any way. This self-conceited and bigoted view has GOT TO GO.
Once, when I was living in another part of this state, I was heard to criticize President Bush for his plans to attack Iraq. (This was in 2002, I said this). A Bush supporter heard me, and called the police. I was not arrested. I told the police that I exercised my First Amendment in a perfectly acceptable way, and was no where close to making any kind of threats. The Bush supporter considered criticism of Bush and a threat to be one and the same, and told the police I made a threat. I am not that stupid even as much as I hate President Bush. I was ignored. The police report made it as far as the district attorney. Thankfully, he was a reasonable liberal Democrat, and dropped what should never have been an issue in the first place. Now, my oldest sister considers my hatred of Bush as a “threat,” and a “symptom” of my Aspergers that “proves” I should be institutionalized. By the way, my oldest sister is a conservative Republican who thinks Bush is one of the greatest U.S. Presidents to walk the earth. This is relevant today, and my civil liberties were grossly violated, and my way of exercising my civil liberties was criminalized JUST BECAUSE I HAVE A DISABILITY.
Deborah Webb
Jul 4, 2008 at 9:11 am
And one more thing again. Though I have only recently been diagnosed as having Asperger’s, it has long been a family belief that this was my “problem.” So, as my sister looks back at my mere criticism of Bush in my exercise of my First Amendment rights, it is now that she says, “See, you do have Aspergers. Your political beliefs are part of the symptom.” So, in her mind, I guess this means that everyone who is a liberal Democrat, like me, whose sense of justice has been violated by the Bush administration, is also suspect, and should probably go in for a diagnosis, meaning: if you politically (and otherwise) disagree with my sister, you should have your head examined. If you know you have been adversely impacted by the Bush administration, my sister will just tell you it is your imagination, and you better get back on your medicine so you “can see more clearly.”
Kristina Chew, PhD
Jul 4, 2008 at 12:04 pm
@Deborah Webb,
thank you so much for writing about your experiences here. sounds like you see a lot and plenty clearly—–
Autismville
Jul 4, 2008 at 12:14 pm
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.
Bonnie Sayers
Jul 4, 2008 at 1:26 pm
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.
Rebecca
Jul 4, 2008 at 1:59 pm
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.
Kristina Chew, PhD
Jul 4, 2008 at 2:16 pm
@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…
Regan
Jul 4, 2008 at 2:36 pm
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.
MomtoJBG
Jul 4, 2008 at 5:22 pm
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.
Regan
Jul 4, 2008 at 6:21 pm
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.)
Kristina Chew, PhD
Jul 4, 2008 at 6:45 pm
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…..)
Kristina Chew, PhD
Jul 4, 2008 at 6:53 pm
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.
Rebecca
Jul 4, 2008 at 7:21 pm
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!
enyal
Jul 5, 2008 at 12:39 am
Thank you for sharing this. It is beautiful.
Storkdok
Jul 5, 2008 at 8:46 am
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!
Daycare: A lot more than a “perk”
Jul 5, 2008 at 12:01 pm
[…] always need someone to meet his bus and supervise him—this is one area that he can only so independent […]
Regan
Jul 5, 2008 at 2:42 pm
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.
Noises and Noisy Is As Noisy Sounds
Jul 6, 2008 at 5:09 am
[…] 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, […]
Storkdok
Jul 6, 2008 at 11:33 am
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.
Patience
Jul 6, 2008 at 2:55 pm
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.
Synesthesia
Jul 7, 2008 at 12:56 pm
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.
Disability Blog Carnival #41: Death Becomes Her « Retired Waif
Jul 14, 2008 at 12:43 am
[…] 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 […]
Musings on Camp and Independence
Jul 27, 2008 at 3:18 pm
[…] 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, […]
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