Limitations and Impairments, and Potential
Published January 08, 2009 @ 01:00AM PT
Limitation and impairment. These are two words that I like to handle with care when talking about my son and about autism and disability.
The times that I find myself most using these terms quite a lot is at IEP meetings; times when Jim and I are in full advocacy mode and seeking to represent Charlie as best as we might. During these meetings, we always seem to find ourselves dancing back and forth between noting his strengths---his willingness to learn, his love of being in motion, his liking for being around people---and his difficulties---the everlasting struggle to communicate, to concentrate, to keep calm and carry on through anxiety. Not being as straightforward and clear about, well, limitations and impairments, can impede creating a curriculum appropriate for Charlie, but focusing only on those can also mean that the curriculum does not sufficiently acknowledge what he is capable of.
Being Charlie's mother has certainly made me aware of my limitations.
One that has tended to have a rather significant impact on my "level of functioning" (a term addressed on the Controversies page under #5, the "autism spectrum") is parking my car and, in particular, parallel parking it.
It's been only fairly recently that I've been able to parallel park our car; I still never seem able to drive in precisely between the two long white lines of the parking spaces in a parking lot. My first lesson in parallel parking was some 14 years ago under the watchful eyes of Jim, in front of a St. Louis pizza place, in front of a few tables of outdoor diners (some of whom, I am quite sure, were the owners of the cars I was trying not to bump into, or not too hard).
What changed the whole parallel-parking-phobia, and my refusal to drive my car into what looked like a way too tight space, was my getting my current job, at a small college in Jersey City. Our campus occupies something more than one city block and there is a chronic lack of parking, whether in lots or on the street (and Jersey City is a place where, as one former resident writes, "Fixing parking tickets is as much a fixture ........ as the New York skyline or the new Jersey City skyline"). I now have a place where I regularly park in front of an old house where my office is, but the driveway is frequently blocked by someone who has quite disregarded (or just really could care less about) the "DRIVEWAY NO PARKING" painted on the street (granted, the words "DRIVEWAY" and "NO" are quite faded, especially the "NO"). Indeed, sometimes the driveway is blocked when my car is parked in the driveway, requiring me to attempt creative maneuvers to get the car out (without scratching it on a cement divider, or the other car), all on a one-way street on a hill going down.
The first year I had to deal with this (while already anxious about getting home to meet Charlie's schoolbus), I panicked quite a bit. Gradually though, I slowly became somewhat adept at squeezing a stationwagon through a really small space, diagonally. (Necessity is the mother of invention, and of parking in Jersey City, I guess you could say.) As a result, the chances of my parking my car, running into my office and running off to teach in good order---of functioning much more efficiently on a work day---have significantly increased (though the car's taken a bit of beating after being driven over sidewalks and thisclose to someone's rusty bumper). And, really, if you'd told me ten years ago that I'd be driving daily over the bridge in this photo (which people do not drive, as the article says, at 45 mph---that would be considered rather slow), I'd have assured you, I can't do that. No, nope, n-o w-a-y.
If we don't note what Charlie cannot yet do----and that "yet" is key, because really, there's no telling what he might be able to do. Believe me, the "team of experts" who diagnosed Charlie in 1999 would not have predicted that he'd be outracing Jim on his bike through the streets of New Jersey. Hence, "potential" is a word I've often used in reference to Charlie's learning, as it has connotations of possibility and of some existing, but not yet tapped ability. Within the word---within its etymology (being a Classics professor, if I'm able to do one thing, it's to explain Latin and Greek roots of words and grammar)---is the Latin word for "can, be able," possum, posse, potui. "Potential" is from an adjective related to possum, and so means "being able," and also gives us the English word "potential."
So if "limitation" and "impairments" are words that describe what someone "can't" do, "potential" expresses what he or she could do; has the possibility of doing. It's a word that, to me, leaves the door open----because you just never know what's going to happen once you go up into the skyway.
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Comments (10)
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Author
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.
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This is so true. It's such a delicate balance; trying to recognize the difficulties and impairments in order to work around them but, at the same time, accurately portray the strengths so that he can be challenged by his curriculum. What makes it that much more challenging is that my son sometimes has these moments where something will just "click" for him and fall into place. Then, other things that I had thought would be relatively easy for him, pose more of a challenge than I expected. His development can be really unpredictable in both good ways and not so good ways. He really keeps us on our toes!
Posted by Beth Costa on 01/08/2009 @ 06:51AM PT
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One of the things that seems most difficult to me, in this balance, is the way that any improvement or gain is seen as a reason to cut back on supports and services. I know, for my own sanity, I have to focus on the positive - the small gains that were made, strengths that exist etc. When I go into a meeting I have to emphasize the problems we still see or I risk having services that were fought for and are still very much needed taken away. In different situations this has been more or less pronounced, but I think in a system where funding as always an issue this is bound to happen. For me, focusing on the negative, even for a couple hour meeting, totally saps the energy that I need to be a good parent for my son.
Posted by Cornelia Rivers on 01/08/2009 @ 08:12AM PT
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Well, why doesn't every special needs kid be involved in their own IEP meetings. They are the ones to benefit not you. As soon as you know your son or daughter can voice their own, let them.
You must help them voice their opinions now. My mom did this with me and it helped me out tremendously.
She pushed me to become a person just like anybody else. Every individual needs to have their right to become a person just like anybody else can.
I am still reading Carl Rogers' book On becoming a Person.
Jason
Posted by Jason Ross on 01/08/2009 @ 08:43AM PT
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@Jason,
Our school district starts including kids in their IEP meetings beginning at age 14. I definitely plan to have my son participate and I make sure now (he's 9 1/2) that I discuss changes that are being made and why things change as we go along. I began doing this with him when he was 6 and started special ed. I hope that, by doing this with him, he will learn how to speak up for himself as he gets older (and I get older and can no longer speak up for him).
Posted by Beth Costa on 01/08/2009 @ 09:39AM PT
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@Jason Ross, whenever I'm in a position to speak with people in the educational system or parents about education, I stress the need to include students in thier own IEP as soon as possible--not only can it help empower students like you say but it can start teaching studients self-advocacy skills that will be needed throughout life. It's always good when I hear more from others how much inclusion in the IEP process benefited them!
Posted by Dora Raymaker on 01/08/2009 @ 09:50AM PT
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Kristina,
A. In this blog entry you list as the first "limitations and impairments" for Charlie "the everlasting struggle to communicate." Indeed, this struggle to communicate may be the cause of the next and only other three matters you list of "to concentrate, to keep calm and carry on through anxiety." In a previous blog entry you describe your 11-1/2 year-old son as "minimally verbal." I note that in various places you describe the intensive efforts you have arranged for the education and treatment of Charlie since he was diagnosed at age 2 - primarily the use of ABA. But I have not seen (admitting that I have not read everything you have ever written about Charlie) any mention of trying AAC - Alternative and Augmentative Communication. If I missed some information about AAC, please inform me, but if not, WHY NOT?
B. With my own son Ben, who is not "minimally verbal" but "completely nonverbal" (a fact for many other persons with autism), AAC was started at age 5-1/2 and that was over 30 years ago. Today, for any child who has a "struggle to communicate" AAC should be started at a preschool age. Many persons with autism through the use of AAC have shown a much higher level of communication skills (and academic skills) than they can show with being "verbal" - speech. I know of persons with severe autism (completely nonverbal) who when given AAC were able to be included in regular classes even though they needed a full-time aide. One such boy, who I have personally known for over 10 years, with the environment of normally verbal classmates, slowly developed speech until he was completely verbal at age level within several years and today studies advanced academics at the equivalent of a post-college level.
C. I have already tried to raise this issue (although I never got to the point of mentioning AAC as such but only the current form of AAC used by my own son Ben so he can take the lead in making life-altering decisions) with your fellow blogger Harold Doherty about his nearly 13 year-old son Conor, but he did not choose to continue this discussion with me. I feel very strongly about the use of AAC for persons with autism who do not have age-level communication skills (and not just for the completely nonverbal). I hope you will choose to respond, both for the benefit of Charlie and all the persons with autism who stuggle to communicate, which often is a major factor in other "limitations and impairments" such as concentration and anxiety.
D. At this point, I wish to raise a question about your blog entry "What is Autism?" where you state "While all individuals labeled with an autism spectrum diagnosis (one of the above 5 categories) are as unique as any other human beings, they share some characteristics typical of autism in common." Then you list 7 characteristics and the main one dealing with communication is number 6, which you state in another blog entry applies to Charlie:
6. "Difficulties in understanding and expressing language as used in typical communication, both verbal and non-verbal. This may manifest similarly to semantic-pragmatic language disorder. It's often because a young child does not seem to be developing language that a parent first seeks to have a child evaluated. As adults, people with an autism spectrum diagnosis often continue struggle to use language to explain their emotions and internal state, and to articulate concepts (which is not to say they do not experience and understand these)."
After using several types of AAC for 16 years, my own son Ben in the early 1990s began to use a still controversial method of AAC called Facilitated Communication (FC) and insists on a controversial method within this controversial method which I call "Full Support Facilitated Communication." My point is that when using FC, all the problems you describe in characteristic 6. completely disappear and my son Ben is extremely articulate. Without full support FC, his level of communication is extremely low. As I wrote in a previous comment, the more I explore the subject of "What is Autism?" I come up with many more questions than answers. But I think these questions are worth discussing and it is worthwhile considering different ideas, especially if such ideas (whether it is AAC in the broadest sense or the specific approach of FC) have resulted in some persons with autism (and of course other persons with different so-called disabilities) to have a good life for many years. Since you live in New Jersey, I will note that FC was really big in New Jersey in the early 1990s and then completely disappeared in New Jersey (largely thanks to the opposition of the supporters of ABA).
E. In closing, I hope to get a comment from you Kristina and I would welcome comments from others.
Arthur Golden of Jerusalem Israel
Posted by Arthur Golden on 01/08/2009 @ 07:04PM PT
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@Arthur Golden, thank you so much for writing here, and for writing about your son. We have brought up the possibility of AAC numerous times for Charlie, and I've spoken to a couple of people about FC.
In regard to using an augmentative device, it's been suggested numerous times and discussed and it still remains a possibility. Thanks to a combination of ABA, verbal behavior, speech therapy (and who knows what else, I often think), Charlie talks in 2-3 word sentences. Enough to convey more than one might think one could with so few words.........
We've still to investigate FC and certainly methods involving typing and I've spoken also to Ralph Savarese (author of _Reasonable People_) about this.
It's really interesting to hear about FC and your son's communication through it----one reason I think we haven't explored FC more (yet, that is) is because Charlie seems to be communicating plenty, though now with language. We feel a tremendous bond with him and a communication that's not via words and the usual channels when out riding bikes or together at the beach or even just around home after the day's tasks are done. This is partially the subject of the book I'm writing --- how we've been able to learn other ways to communicate thanks to Charlie.
And yes, hope to continue the conversation. Thank you----
Posted by Kristina Chew on 01/08/2009 @ 09:06PM PT
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Kristina,
F. (Continuing my first comment which had sections A. to E.) And thank you for your speedy and detailed response about your involvement with AAC, FC and "nonstandard" communication with your 11-/12 year old son Charlie. This newly disclosed information took me by surprise because I had made some apparently erroneous assumptions based upon certain other information. I would like to discuss a couple of new points with you, but I would prefer to not initiate them on a public forum. Could I contact you by private email or would you prefer to continue this discussion only in public? One point I would only initiate in private and the other point I will defer bringing up in public for up to 4 days, while I await a reply to another email. At this time, it is entirely your choice which would be fine with me either way.
G. I am glad to learn that you have been considering AAC and FC. I understand your typical position to defer such a consideration "because Charlie seems to be communicating plenty, though now with language" [but did you mean to type "not" instead of "now"?]. "Not" would seem to make more sense because your next statement is:
"We feel a tremendous bond with him and a communication that's not via words and the usual channels when out riding bikes or together at the beach or even just around home after the day's tasks are done."
While the above statement is open to interpretation (such interpretation I would avoid initiating in public but some others might try to guess in public), this is what I am vaguely referring to in public as "nonstandard" communication. For several years, I have been very explicit in publicly available statements on the internet about my "nonstandard" communication with my son Ben, which started when he was 22 years old, over 14 years ago. Of course, you might mean something completely different from what I have experienced with my son Ben. Oh well, again more questions than answers!
H. However, if an 11-1/2 year old such as "Charlie talks in 2-3 word sentences. Enough to convey more than one might think one could with so few words..." - while that is almost infinitely better than my own son Ben at that age, I do not take the typical position for someone in Charlie's situation that AAC is not needed in this situation. I would advocate AAC if his standard expressive language is below age level and does not allow him to fully participate in age appropriate academics. Although I may be wrong about your position, I would question accepting his level of expressive language because it does not follow my belief of "presuming competence" and actually I go much further in denying the concept of mental retardation for anyone. If you accept the language level of what seems to me to be of a 3 year-old in an 11-1/2 year-old boy, then isn't this accepting a developmental level that in old-fashioned language would be described as severely mentally retarded? Also, previously you described Charlie as "minimally verbal." What do you really believe about the potential of Charlie?
I. Although we have used Facilitated Communication with my son Ben for over 15 years, we have a strong local support network here in Jerusalem Israel within the large local ultraorthodox Jewish community, at least to currently support my son Ben and a few others in the use of full support FC. Without such a strong local support network, which I understand no longer exists in the state of New Jersey, I would avoid using FC for regular academic work. Please note that my own son Ben never used FC for regular academic work here in Israel (such as attending an academic college as a young adult), its usual use in modern Western cultures. He has used his type of FC for other areas of expression equivalent to a very advanced academic level.
J. In closing this comment, I do wish to note that while I appreciate that Dora Raymaker replied so kindly to my first comments on "What is Autism" and so have you on this blog entry, I hope others will comment on my comments. Feedback, including "construcitive criticism" is so helpful in molding one's ideas, especially where the goal is to actually help persons with autism and other disabilities to reach their full potential (which potential I always assume is very high).
Arthur Golden of Jerusalem Israel
Posted by Arthur Golden on 01/09/2009 @ 03:11AM PT
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Kristina,
F. (Continuing my first comment which had sections A. to E.) And thank you for your speedy and detailed response about your involvement with AAC, FC and "nonstandard" communication with your 11-/12 year old son Charlie. This newly disclosed information took me by surprise because I had made some apparently erroneous assumptions based upon certain other information. I would like to discuss a couple of new points with you, but I would prefer to not initiate them on a public forum. Could I contact you by private email or would you prefer to continue this discussion only in public? One point I would only initiate in private and the other point I will defer bringing up in public for up to 4 days, while I await a reply to another email. At this time, it is entirely your choice which would be fine with me either way.
G. I am glad to learn that you have been considering AAC and FC. I understand your typical position to defer such a consideration "because Charlie seems to be communicating plenty, though now with language" [but did you mean to type "not" instead of "now"?]. "Not" would seem to make more sense because your next statement is:
"We feel a tremendous bond with him and a communication that's not via words and the usual channels when out riding bikes or together at the beach or even just around home after the day's tasks are done."
While the above statement is open to interpretation (such interpretation I would avoid initiating in public but some others might try to guess in public), this is what I am vaguely referring to in public as "nonstandard" communication. For several years, I have been very explicit in publicly available statements on the internet about my "nonstandard" communication with my son Ben, which started when he was 22 years old, over 14 years ago. Of course, you might mean something completely different from what I have experienced with my son Ben. Oh well, again more questions than answers!
H. However, if an 11-1/2 year old such as "Charlie talks in 2-3 word sentences. Enough to convey more than one might think one could with so few words..." - while that is almost infinitely better than my own son Ben at that age, I do not take the typical position for someone in Charlie's situation that AAC is not needed in this situation. I would advocate AAC if his standard expressive language is below age level and does not allow him to fully participate in age appropriate academics. Although I may be wrong about your position, I would question accepting his level of expressive language because it does not follow my belief of "presuming competence" and actually I go much further in denying the concept of mental retardation for anyone. If you accept the language level of what seems to me to be of a 3 year-old in an 11-1/2 year-old boy, then isn't this accepting a developmental level that in old-fashioned language would be described as severely mentally retarded? Also, previously you described Charlie as "minimally verbal." What do you really believe about the potential of Charlie?
I. Although we have used Facilitated Communication with my son Ben for over 15 years, we have a strong local support network here in Jerusalem Israel within the large local ultraorthodox Jewish community, at least to currently support my son Ben and a few others in the use of full support FC. Without such a strong local support network, which I understand no longer exists in the state of New Jersey, I would avoid using FC for regular academic work. Please note that my own son Ben never used FC for regular academic work here in Israel (such as attending an academic college as a young adult), its usual use in modern Western cultures. He has used his type of FC for other areas of expression equivalent to a very advanced academic level.
J. In closing this comment, I do wish to note that while I appreciate that Dora Raymaker replied so kindly to my first comments on "What is Autism" and so have you on this blog entry, I hope others will comment on my comments. Feedback, including "construcitive criticism" is so helpful in molding one's ideas, especially where the goal is to actually help persons with autism and other disabilities to reach their full potential (which potential I always assume is very high).
Arthur Golden of Jerusalem Israel
Posted by Arthur Golden on 01/09/2009 @ 04:41AM PT
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I had trouble posting my comments sections F. to J. and after numerous attempts, the same comment was entered twice.
Sorry about that! Are you able to remove the extra copy?
Posted by Arthur Golden on 01/09/2009 @ 04:44AM PT
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