community inclusion
Back on the Road to Find a School
Published July 15, 2009 @ 12:13AM PT
Jim and I met with our school district yesterday at an IEP meeting that the district had requested. The school district is of the opinion that Charlie needs to be educated in a placement other than in the public schools (he is currently in a self-contained autism classroom in our town's middle school). There are some private autism schools here in New Jersey that are possibilities (and I am actually visiting one this very morning), but these schools are very small and, when we mention them as placements that we would like to inquire about for Charlie, the response is usually statements such as:
"getting into X school is harder than getting into Harvard"
"Charlie will never get in because they only take 3 to 4 year olds and he is too old"
Not exactly encouraging.
To return to the IEP meeting (whose overall tone was on a similar note, as you may imagine). The private schools, including the one I am visiting and another I will visit tomorrow, have a one-to-one ratio of teachers/therapists to students, as is the case in Charlie's current program. Noting how difficult it is to get a spot at one of these schools, the district has mentioned some other placements, including a center that is quite large; earlier this year, they had also mentioned this residential placement. We have had many questions about these places concerning the training and supervision of the staff, the staff-to-child ratio, and the staff turnover rate. Suffice it to say that we have found answers to our questions, and that these answers have only served to make us raise our eyebrows more and to dig our heels in deep.
Prior to the meeting (which was originally scheduled in late June and cancelled and rescheduled by the district), I had requested to see Charlie's records under FERPA (the Family Educational Rights and Privacy Act). This review made it clear that evaluations (neuropsychological, speech/language, OT) had not been done for Charlie in more than three years. Under IDEA, students with disabilities are to be evaluated at least every three years, and such evaluations are necessary to determine placement. What, therefore, was the district basing a change in Charlie's placement on?
All this, combined with the district talking about other placements, adds up to a situation that is in-ter-est-ing, to say the least and more than familiar to Jim and me.
Exclusivity for Inclusion
Published July 02, 2009 @ 10:14AM PT
A special surfing group for ASD kids seems to be meeting with success. Reminds me of ASD night for both kids and adults at the Long Beach Aquarium. And also, some recent dances. What all these activities have in common is that they are exclusive to people with a specific set of needs. Is this a problem with "inclusion?"
Concepts of inclusion have always been hard for me to come to terms with. On one hand, I do not (obviously!) want to be discriminated against, denied an education, or denied any sort of opportunity I may want to seize. On the other hand, I frankly do not want to be included in most "community activities" and often resent the insistence of others that I be included. Good grief, the last thing I want to do, for example, is go shopping at a mall (or as I call it "maul")! Include me in a quiet afternoon hike instead, please! I often feel like that the word "inclusion" is used to mean "participate with all the others in all the same activities" which has never sat well with me.
At the ADA Section II and III talk, the speaker gave a fascinating example of inclusion. People with disabilities are to be included in the same activities as non-disabled people, except in the situation where in order to enable equal access, the activity needs to be modified. For example, a museum tour for people who are not blind would involve not touching the art; however, a special museum tour for people who are blind might involve people being allowed to touch the art.
In the rush to include include include, its important to not loose sight of what inclusion is supposed to be doing. It is not meant to simply fill a seat, to say, yes, this autistic person is in the same setting as non-autistic people of the same age. It is meant to actually include--to enable us to participate effectively in activities that are also open to others. Should we want to participate! (Never lose sight of self-determination.)
This may mean that, like the blind people at the museum, activities need to be created just for us. This isn't bad--it's good. It's the reason why some civil rights laws were created. For us at times, being included does not mean being forced to do the same things in the same way as others, but to do the things we actually want to do in the way that works best for us.
The Principle of Doubt
Published June 29, 2009 @ 12:52AM PT
Celebrities float in and out of discussions about autism in ways that often attract attention, but impede real understanding. While feeling saddened by the passing of two pop icons who were media fixtures throughout my childhood (and of that of many of us), the inevitable focus on them has led me to reflect how little our little household follows trends and "the latest," and how Charlie himself has less than little interest in the "latest." Charlie seems certain about what he likes, and what not, and lets us know.
With all apologies to those who follow/like various teeny bopper types, it's been ok for Jim and me as parents that Charlie has no idea who Hannah Montana or the Jonas Brothers is (not that I do, either). Maybe some think it's sad that Charlie's not sharing in the cultural icons of his generation, but (the secret is revealed) I had zero interest in most celebrities when I was his age, preferring my own interests (which, for a time, meant Bach). There's a part about parenting a child who's different, a child with disabilities, that is, if I can may it, freeing because we don't have to be typical parents. We can be more of who we are.
Indeed, again and again in life with Charlie, it's been necessary:
(1) for Jim and me to learn to think outside the proverbial box (regarding employment and services for adults, as a friend reminded me in a recent comment). I think of all the times we've heard "can't do that" or "it's not possible" or "that program does not exist" or "he's never going to do that." Life raising a child who's got some pretty big needs means, we hear a lot of such statements. We try, want, and need to be positive and upbeat and in "we can do it!" mode most of the time, but sometimes it seems that you exhaust every option and there's no energy left, barely even enough to hope.
It's been equally necessary(2) to be in sync with Charlie who walks his own path away from most every trend and gossipy concern. I cannot measure it, but a constant piece of our lives is trying (not always getting it right, but still trying) to understand his communication on his own terms. One hears regularly about how autistic individuals "lack empathy" and are unable to put themselves into another person's shoes, but are those of us who aren't on the spectrum any better able to do that? How hard have you, we, tried to see things from the perspective of someone on the spectrum?
Saturday we did something not terribly extraordinary, but certainly out of the ordinary. A friend of Jim's is directing Doubt by John Patrick Shanley at a theater outside Philadelphia and we thought we'd try to see it.
Megaconference Special #4 of 6: PAs, Social Skills, and Community
Published June 28, 2009 @ 11:00AM PT
In the afternoon on the day of Kunc's keynote, after delivering my own presentation along with my co-presenter Elesia (I'll get back to that a little perhaps), I attended a panel session about hiring and maintaining a personal assistant. Both the panel, and the audience, consisted primarily of people with physical disabilities, and, in the audience, a few parents of younger children.
On one side of things, the issues surrounding personal assistants are pretty universal: How do I find someone I can trust? How do I protect myself from abuse? How do I find someone who is able to work well with me? How do we maintain good employer / employee boundaries? How do I fire someone without a mess?
On the other side of things, how these issues are resolved is pretty individual. Relying on one's interview skills to initially determine if someone is trustworthy is only a good idea if one has excellent interview skills. Understanding when one is being taken advantage of requires a certain amount of skill as well--and just because a person doesn't realize they are being abused or taken advantage of does not mean the abuse isn't happening.
I often look to the broader disability community, especially to people who have been successfully living a high quality of life for many years, for ideas and information. There is a lot of wisdom out there to draw from, and one should not discard knowledge just because it does not come from "within the autism community" (whatever that means). I have a professor who says, "a systems scientist is a person who looks at birds flocking and fish schooling and realizes they are both the same." There are many repeat patterns like this between the Autistic community and other disability communities.
And yet--there is also significant divergence in strategies that work for people whose differences fall in a physical rather than mental and/or social realm. We may need different strategies for learning how to hire, who to hire, how to protect ourselves. We may need a panel and audience that is populated more by people who have social or mental differences so that we can learn strategies for hiring and maintaining a personal assistant that work with our specific strengths and around our specific weaknesses. I didn't end up getting as much out of the personal assistant panel as I hoped for this reason.
However, I do have to say that of all the presentations I attended, I found that panel and that audience the most inclusive, welcoming, and accommodating of any in the whole three days. They made sure my questions were voiced and answered, they gave me time to communicate at my own slow pace, and they took the extra time to make sure we were all understanding.
Sometimes the most valuable thing that I get from cross-disability interactions isn't the shared information but the shared sense of, yes for real, belonging to a community. And that is, for any human being, an essential and valuable thing.
Summertime
Published June 19, 2009 @ 12:33AM PT
This is Charlie's last week of school before summer starts (he has one more day, Monday). His Extended School Year Program has been trimmed down to four days a week, for four weeks. (And I know not everyone has even that....)
My friend Shannon has a totally on-target post about when summer is extra-special over at BlogHer. As much as I read about summer camps for kids with disabilities (like this one in Canada), we've found options to be far and few between for Charlie. Many programs are geared for children younger than Charlie and the programs that Charlie could go too (like one that could be paid for via New Jersey's Department of Developmental Disabilities) just doesn't sound like the right thing for him (based on speaking to other parents and learning more about the camp).
So this may be more of a dad-mom-'n'-Charlie summer (and kidsitters) than previously.
Sign of a good start: The week started off with Jim and Charlie on a Sunday morning bike ride (under gray skies and a bit of a drizzle; we haven't had the sun here for 2+ weeks it seems, and one must bike). They stopped at our favorite bagel place (Jim has decided it must be one of the two best restaurants in New Jersey......there's a lot more than cream cheese and lox you can get). It being Sunday morning, and this place being so good, it was completely mobbed. Charlie sat down at a little table outside (bikes parked nearby) and Jim forged into the crowd, constantly turning to see Charlie's head. Foodstuffs were procured (including one for me, stowed in Jim's pocket) and Jim and Charlie had their brunch (yes, gluten-y) en plein air, with a fine view of a plaza (not a mall!) parking lot. Afterwards we went swimming at the YMCA and then into lower Manhattan, where I met some fellow Change.org folks (shout out to Danny, Matt, and Mike!). After dining on burgers and shrimps, Jim and Charlie roamed.
Monday was Charlie's last full day of school (until September....); he started half-days on Tuesday and this disrupted his internal sense of The Order of Things. We'd been swimming at 4pm for a couple of weeks and that time worked out perfectly with Charlie coming home at 2.30pm, snacking, and getting ready for the pool. Now he's been coming home at 12.30pm and the still wanted to swim, and frowned when I told him we had to wait.......a few more hours.
Jim came home early two days and some midweek bike-riding ensued; the new kidsitter also came and accompanied Charlie and me on a walk to the supermarket for paper plates, napkins and plastic utensils for his class's end-of-year party. Last night Jim and Charlie dropped me off at the train station to travel down to Washington, D.C.. They did the diner thing (comfort food, comforting environs) and then to the basketball court: All good dad-n-son time. (My trip is regarding autism research; a "pleasure" trip would not, of course, be a solo.)
I think this summer could well be ok. (It would help some, too, if the sun would chase away the rain and gray. Some time, maybe soon.)
Late Night at the Aquarium
Published June 16, 2009 @ 04:00PM PT
Long Beach Aquarium in California is hosting autism family night for both adults and children on the spectrum. The Aquarium is being kept open for four hours after closing to accommodate the event.
As someone who adores museums, aquariums, interpretive centers, and pretty much any sort of educational exhibit but can't tolerate much in the way of crowds and noise, I immediately wished that no only did I live near Long View so I could attend, but also wished that more educational centers would follow the same model. As it is, I plan my visits for times as unpopular as possible--a few hours before closing, on a Wednesday, during the school year-- (I also spent most of my youth living a nocturnal lifestyle to avoid overload, sleeping from 8 AM - 4 PM).
According to the Examiner article the Long Beach Aquarium is committed to accessibility in general. Setting aside time without the crowds and bustle of the daily traffic is a great way to make educational institutions more accessible to people with sensory sensitivities.
Mallrats We Ain't
Published June 14, 2009 @ 01:00AM PT
We don't do malls.
As we live in New Jersey, a state somewhat synonymous, and certainly well-peppered, with shopping malls (covered, plaza-style, outlet), it may seem quite incredible that the three of us basically never set foot in one. Truly, we have no need (ok, except for when I need to get something from the Apple store; having converted Jim to Macs and with Charlie lovin' his iPod, such trips are an occasional necessity) (though truth to tell, I bought Jim's laptop online).
It was a happy moment for Jim when he realized that, instead of having to endure shoe salespeople measuring his feet, commenting on the state of his socks, and trying to sell him loafers he'd never wear, I could get him black slip-ons in just the right size courtesy of OnlinesShoes.com (am now getting Charlie his shoes from there too). Charlie not being too thrilled about going to stuffy department store dressing rooms and trying on pants to see what fits (really, who has fun memories of that?), I'd just as well order his clothes online. We've yet to have to return anything and I can always make sure he has things in the right colors.
Malls---and bigbox stores---are places Charlie is happy to do without visiting. Rob Walker in last weekend's New York Times Magazine commented on the demise of such American shopping meccas as malls and mammoth warehouse-sized stores like Walmart's, BestBuy, and the like:
Talk of American infrastructure tends to focus on inadequacies: roads that need to be repaired or widened, bridges fortified, electrical grids updated. All the more striking, then, that America’s retail infrastructure — its malls, supercenters, big boxes and other styles of store-clumping — has come to be characterized by rampant abundance. This has been a decades-long trend. But it has taken the economic downturn, with chain stores liquidating, mall tenancy slipping and car dealerships scheduled for closure, to focus popular attention on the problem with our retail infrastructure: there is too much of it.
And really, may there be less. Target is the only such store that Charlie will sometimes go into (and, lately, he has been disinclined to). Malls and bigbox stores have all the trappings that are likely to cause terrible sensory overload (fluorescent lights everywhere, disorienting floorplans, shelves and stores of stuff in overabundance) in anyone. Charlie is certainly very sensitive to sound and light. He has pretty much zero interest in any consumer goods on sale at any mall and even less in "malling," hanging, and being appropriately "cool." For him (ok, for us), the mall is a place to be suffered through, and left as soon as possible.
(So generally when I make my trips to the Apple store, Jim and Charlie drop me off and go for a spin to get sodas.)
Charlie seems much more to prefer stores that are built to human scale: bodegas, delis, 7-11s and the like (like a local independent bookstore---yes, they still exist here in the Garden State, chainstores be d*****d). There're many fewer shelves with a manageable amount of items to survey. The exit is easily found. The ceiling is not sky-high and everything is just a little more........personable.
I know of families who practice taking a child on the spectrum to a mall, so that they can be desensitized to the mall environment. But why not redesign the built environment to a properly human scale that doesn't wreak sensory havoc; that is simply more humane?
