And I don't know how I feel about that. I have to sort my feelings out, and I don't know how. My shrink and I don't really do that.
It all started with Table for 12. A half hr Christmas episode. Eh. I'm Jewish. I don't do Christmas. Then the moment I'd been waiting for--The Hayes visit Special Strides, a therapeutic riding center. I rode from when I was 3 to when I was 16.
Now I'm sorry, but when they first went in the place made me uncomfortable. Too clean, nice and neat looking. Although that ramp was cool. Real horseback riders get down and dirty. Real horseback riders like dirt and get messy. Real horseback riders come home, collapse until dinner and then take a bath wherein a ring of dirt is left around the tub. And oh yeah, this has absolutely nothing to do with the show, and don't ask me how I remember this, but real horseback riders do not wear hot pink nail polish even if each hand does happen to have a horseshoe decal on it. I think I was 6. I thought they were cool. I got a talking to from my trainer about that. You just can't get dirty enough with nail polish on. How in the world do those things pop back into consciousness?
The whole family got a tour around the barn and then 9 of the kids got to paint horseshoes while Becca got an eval from the OT & PT who work there. I want to paint a horseshoe. I think I did once, but I don't know what happened to it. FYI when painting horseshoes you MUST use an old worn out one, NOT a new one (new ones are not lucky), and everyone knows you MUST hang them open end up or else the luck will fall out.
The OT/PT eval, that is an area where I need to evaluate my feelings. For one, OTs and PTs have no place in a barn or within 500 feet of one. Riding isn't therapy, it's "therapy" and the sanctity of the experience demands that lessons be facilitated by a trained therapeutic riding instructor solely. When you're riding with a trainer (even if you have volunteers assisting) you concentrate, you try hard, you strive to learn new skills. You do learn new skills and that's an incredible sense of mastery. An incredible sense of pride comes over you when suddenly after months and months of not being able to do a new task something clicks in your brain and it tells your hands and/or your legs exactly what to do in exactly the right way, with the exact amount of pressure, and the right shift of your body weight, and it is easy. Until of course things become so easy that you out master that horse and the new horse requires a more sophisticated amount of pressure and a more sophisticated shift of body weight and you have to start all over. So frustrating. I just don't see this process being facilitated through an OT and/or PT.
But back to the eval. That had nothing to do with the eval. I spent my entire childhood in therapy it seems. Sometimes up to 15 times per week. Yes that is more then once a day and did include weekends. I was tortured. I was in regular therapy of some sort of another (most likely multiple) up until I was 9 I think, and then I had surgery at 10, 13, 14, & 17 and back into PT I went. There is a reason why, when talking about my "therapist" and not referring to her by name, I most often refer to her as my "shrink" and not my "therapist." When I think of the word therapist I think of a physical therapist. That's the automatic association. Not a psychotherapist. And what I do with her does not need to be associated with what I used to be subjected to against my will.
Against her will. That poor little girl had to be subjected to TWO therapists manhandling her against her will and there was nothing she could do about it. One is bad enough, but TWO at the same time?!?!?! To do that to a 4 yo is unconscionable. Especially when you are non-verbal with no established communication system and thus no means with which to bitch and moan and try to fight back, to fight them off. It's not fair. My heart breaks for her.
I still haven't figured out how I feel about the episode as a whole. You know, in terms of my own personal flashbacks to my torturous childhood and my empathy towards Becca. I also don't know how I feel about watching a kid on a horse in general. Any kid on a horse. I haven't ridden in years, I no longer can afford to go nor would I have the transportation if I could. Paratransit only goes w/in 3/4 mi of a fixed public transit route and no barns are near buses. They're out in the country. I like to look at horses, but it gives me that mixed feeling I'm trying to identify. On the one hand horses make my face light up. It'd be interesting to have an MRI and see how much my brain would light up; how much my "happy centers" would be activated. But on the other hand, I get this incredible sense of longing for something I cannot have. Disney World is not "the happiest place on earth," barns are. Having feelings of happiness and depression at the same time is just odd.
The show was over and then Jon & Kate Plus 8 went on. Not something I was particularly interested in watching last night so I was going to turn it off and go to bed. Except that what was on was a rerun of an episode that ran in the fall where the family went to Memphis to visit St Jude's. I knew of the episode and watched it after I heard about it through the child life listserv. Child life held a prominent role in that segment of the show. How odd, I thought, that the two episodes would be aired back to back, in the order in which my life unfolded. First came therapy, starting when I was 6mos old, then came riding at 3, and then at 5 the surgeries started. I had surgery at 5, 10, 13, 14, 17, 17 (7 weeks apart, absolutely brutal) & 19. Two more to go eventually. I also traveled for 6 out of 7 of those surgeries. Twice to New Jersey and 4 times to Minnesota (see previous post).
Therapy, riding & surgery have always been intertwined in my life. Therapy and riding both stopped when the surgeries stopped. Therapy, riding, and surgery were my life. When I think back on my childhood, which being a Family Studies major I've had to do from time to time, all I can remember are therapy, riding, & surgery. I remember my PT taking a theraband and tying my ankle to her ballerina pole (somehow that seemed especially devious) and playing with shaving cream w/Mrs Meanie, my OT (she made me eat w/a fork, a very mean thing to do in the mind of a little kid). I remember having to ride backwards on a pony just like Becca did, except that I remember being absolutely petrified that I was going to fall off (even though I had someone at the horse's head to steer and a volunteer holding each of my ankles) because I had to put my hands on my head. It's good for balance. I'd do it now w/o complaint. I remember being in the hospital in Minnesota twice during Christmastime and the ridiculous amount of visitors that came. 7 Santas in one hospital stay. And just to let you know, when Santa comes to the hospital he is equal opportunity. He gives toys to the Jews too. In case you want to know, I can tell you how to attach underwear to a full body cast if you're afraid people will know there is no underwear under your dress, and I can tell you that a male orthopedist is not fazed at all when he is about to operate all up in your private area and is told that his 17 yo patient has her period and doesn't wear tampons (I was very embarrassed).
I can also tell you about how I took Star, my stuffed clydesdale (pictured right) to the hospital with me when I was 5. A nurse put a hospital bracelet on her bridle that had her name on it. My parents wanted to keep it on there but I insisted they cut it off after I got home. Now I wish they'd left it on. That blanket she's on, I got that in the hospital when I was 13 or 14. I woke up from a drugged stupor and it was covering me. I had no idea where it came from and neither did my mom who had left the room. Volunteers donate them to the kids I found out. See, I have good memories of the hospital too as odd as it sounds. That blanket stays with me at school even 10 years later (WOW, where did the time go?). It makes me feel good. Star ended up at school after I had my first major melt down in recent history and on rare occasion I sleep with her when I need to now. At 24 I am not ashamed to admit that.
I did belong to girl scouts from 1st grade through 6th and back in elementary school I did have friends over on non therapy days to play house and school, but it takes a much more concentrated effort to drudge up a "normal" childhood for myself. Therapy, riding & surgery were the dominant forces in my life, not friends and play. I'm not sure how I feel about that. Whenever I have flashbacks to my childhood either through random TV shows or a forced exercise in class I get that same feeling I cannot identify. Do I want to identify it? I don't know. That would mean involving my shrink, and as I said, we don't do this kind of stuff. I don't particularly agree with that approach to solving my issues and neither does she. "Now" is probably more important. Although I don't really know for sure. We'll see.
It's Beginning to Look A Lot Like Fun*Run Time
Tuesday, March 31, 2009
And I don't know how I feel about that. I have to sort my feelings out, and I don't know how. My shrink and I don't really do that.
Monday, March 30, 2009
then I can use this blog to drum up support for local political (of sorts) causes in Minnesota too. I got the following announcement through the causes application on Facebook. Gillette doesn't just serve kids in MN, but children and adults from places like Maryland (me!) and Tanzania (see their website http://www.gillettechildrens.org/). That place will always be somewhere special for me, odd as it sounds.
As a supporter of Gillette Children’s Specialty Healthcare, you know how critical the organization's services are for tens of thousands of Minnesota children and their families. However, Gillette is at an important juncture. The needs of the community are simply growing beyond what we have the space to accomodate. For instance while the number of annual surgeries performed at Gillette has increased 135% in the past decade, the space to perform those surgeries has remained unchanged during the same time period.
At this time, to meet the needs of the community and the continued growth in population, Gillette is planning to expand its pediatric intensive care unit and surgery areas. This proposed expansion will more than double the capacity of these areas, allowing the organization to meet both the current needs of the community as well as projections for future needs as well. Currently, it is our hope that this project would be paid for in a combination of methods. $40 million from internal funding, and $10 million through a bill that is currently being reviewed by the State of Minnesota legislators.
Here is where we need your help. If we do not receive the support from the legislature, we will have to reassess what we can do and how quickly.
Will you please visit our Legislative Action Center and ask Minnesota's House of Representatives to ensure that children across Minnesota have access to critical health care services here at Gillette.
I was just glancing at Terri's blog (I really do need some time to actually read it, looks like she has some great posts) and realized that TOMORROW is "end the r-word day." I feel like I should do something, but I don't know what. Print the graphic (above) and tape it to the back of my chair for the day? Maybe. Not sure. Does anyone reading have an idea?
The 50-minute rally will feature actor Eddie Barbanell from the hit movie “The Ringer,” Special Olympics athletes and volunteers, and original music performed by rap artist Rush. Also on the program are original videos produced by young people. High school students across the country will be asked to take the pledge to stop using the “R” word and to help raise awareness among their friends. The rally is being produced by Miami Palmetto Senior High School 11th-grader Noah Gray, Special Olympics Florida and SchoolTube.
Tonight at 9 & 9:30 eastern TLC is airing 2 new episodes of the new reality TV show about a family with 10 kids, one of which, Rebecca, (shown above sitting on her mother's lap) has CP. I'm posting this in particular because I am very excited about the 9:30 episode which is all about taking Rebecca for her 1st therapeutic riding lesson. This is something I was involved in from when I was 3 to when I was 16 (college costs too much $ ;( ) and I can't say enough about the good horses can do. I also LOVE the amount of disability awareness this show will bring. I'm almost bursting! Is it wrong to get this excited? (about TV? Yes. About horses? NEVER!) I need a life...
Thursday, March 26, 2009
I was on spring break and decided not to do one last week. But I could really use this today, so I'm glad I remembered.
Today I am thankful because...
- I found a new family practitioner who is crip friendly and went for my first physical in 4 years. Still waiting for the lab work to come back, but I am sure I am perfectly healthy.
- When I was home I grabbed some CDs and now I have new tunes on my ipods.
- I got to see family last weekend.
- I scheduled my return ride so that after I testified on SB907 (see posts below) I could tour the shops in Annapolis for a bit. I haven't been there in 4 years.
- I'm not sure how thankful I am for that, but I am thankful that I didn't get lost going back to the senate office building after I was done. I have the sense of dirrection of a flea.
- I really got to network in Annapolis. The secretary of the Department of Disabilities was there as well as some people from 3 of the local independent living centers, who all liked what I had to say.
- I got to spend time with friends over the break.
- Paratransit has been working perfectly since I've had to start using it again. Surprisingly.
- It's going to start getting warmer.
- My 24th birthday, which is in 10 days from now is not durring Passover (I'm Jewish)
[image description: red heart that looks like it was done out of paint, with thankful written in cursive inside the heart towards the left]
Wednesday, March 25, 2009
I was watching TLC recently and saw a commercial for a new reality show, Table for 12. ANOTHER ONE??? I said. Good God. Who cares? TLC already has Little People, Big World, Jon & Kate Plus 8, & 18 Kids and Counting. C'mon, regular families, tons of kids. We have enough of that. Well apparently not. I was lucky enough to start reading media dis & dat and caught an article about the show this morning. Rebecca, one of the 4 year old sextuplets has CP--LIKE ME!!! Except, well, she is legally blind and is much higher tone, but whatev. In the article the parents said they are doing the show to educate the public about CP. HOW COOL!!!
I once got into an argument with a friend who said the Rolloffs were exploiting themselves for the money. I got all uppity (as is my nature). They are doing it for the money of course, but they are really doing it as a service to this country. They are educating people about dwarfism and disability in general and showing people that we don't have the plague or something. "How's Your News?"? Same thing.
I think it is so cool that disability is all over TV, bringing awareness all over the country. But why? Why now? Why has disability become so popular? What do you think? I don't know, but I also don't know if I care why. I'm just happy, end of story.
On the second episode tonight the family went to the aquarium and the staff made sure that Rebecca had a sensory experience with some creatures that they brought over for her to touch. I had sympathy pains. I was hypersensitive when I was little. A lot of people with CP do. I went through a lot of therapy to get over that. Feeling for her if she is hypersensitive. Touching a starfish... EWWWWW! To be hypersensitive and blind (if she is) could cause problems I imagine. The 2 episodes repeat Saturday and then there are 2 new episodes next Monday, one that centers on taking Rebecca for her first hypotherapy session. I LOVE PONIES!
Please watch Monday and support disability awareness. This show could break down a lot of barriers for all of us.
Tuesday, March 24, 2009
Today, as I already said in my last post, I went to Annapolis to testify at a bill hearing for a bill about including disability rights/awareness education in schools for K-post secondary students. A parent of a child with Danny Walker syndrome who works for the Danny Walker syndrome association, someone who works for the Maryland Developmental Disabilities Council, and another friend from CDRC, as well as the Secretary of the MD Department of Disabilities testified. The two other people who testified told me they went to check and the bill did not pass the house. WTF??? Apparently they grouped it with a bunch of other "days" and people don't like days. But, they said African American Baseball day got voted on seperately and that passed. WTF???
If the bill is voted on on its own in the senate and is seen for its own merit it should pass. It's not a "day" or even a month. It's an educational initative. When it passes it goes back to the house. So if you are a Maryland resident, please find out who you're state senator is and urge them to support the bill. If you're reading this post I don't think I have to tell you how important it is.
Monday, March 23, 2009
The bill I submitted written testimony for has passed the house and is now being heard in the senate tomorrow afternoon. I will be schlepping to Annapolis to testify in person this time because it is on a better day of the week. This will be my first time taking paratransit somewhere that far. It could be interesting... If you care at all, my revamped testimony is below, and if you live in Maryland, find your state senator, contact them and tell them to pass it.
My name is Cheryl *censored*. I am a senior Family Studies and Community Development Major at Towson University and am looking forward to spending my life mentoring children with disabilities after graduation. I am here today in strong support of SB907.
I have been involved in disability rights/awareness for the past 9 years. I started speaking to groups when I was just 15 years old, through a program run out of Montgomery County Public Schools, Montgomery Exceptional Leaders. After high school I continued seeking out speaking opportunities on my own. I have spoken to children as young as 9, and have done several professional training workshops.
I have chosen to work with children with disabilities because I've witnessed first hand the high comorbidity rate between having a visible disability and depression. It breaks my heart to hear teens and peers talk about feeling worthless just because they can't drive or have some scars from surgery. It doesn't have to be this way, people don't have to focus just on what they consider to be their negative aspects, although isn't that human nature? Doesn't EVERYONE?
SB907's emphasis on educating K-12 students will help ALL students, not just students with disabilities, because the curriculum will help students to learn that there are many factors that make people who they are. It will also help to foster a sense of pride in students with disabilities by introducing them to famous people who are just like them—something I wish someone had done for me when I was a kid.
I was also pleasantly surprised to learn that SB907 places a significant emphasis on post-secondary education, something I have focused on in recent years. Family studies majors graduate prepared to work in a variety of human services jobs. Many of my fellow graduates will end up working front lines with children and/or families touched by disabilities, and after interacting with them and hearing a free association with the word disability, I was more then frightened by my vision of them interacting with disabled clients in the field. I knew my department wasn’t doing a good job preparing graduates to work with this population so I took it upon myself to undertake a very long and overwhelming independent study. For about a year, I poured my heart and soul into creating a three hour disability awareness workshop for 120 Towson University students enrolled in various Family Studies classes.
Preliminary data from that initial workshop shows overwhelmingly how well it worked. Students responded that they learned things such as disability etiquette, the impact of disability on the individual and family, and the need to view each person as an individual, among other things. The workshop was viewed by the Family Studies Department and other associated Towson University departments (Disability Support and Towson University Outreach) as such a success that it is offered as an independent study to a senior Family Studies student annually. The Oct 2010 workshop will be the 3rd annual. It is my greatest wish that disability will start to become included within lectures covering cultural competency and that something along the lines of my workshop can be replicated on all of the campuses across the state and attended by every student in a human services major.
Please support SB907. Your support means a lot to everyone that is, has been, or will be touched by disability in their lifetime.
Friday, March 20, 2009
Why is no one covering this? And by 'no one' I mean no one in my small circle in the disability blogsphere that is. No one on my blog roll, and only one person on alltop (besides Patrica Bauer of course) who is in New Zealand.
Last night I was talking to my mom on the phone. "What channel is Jay Leno on?" she asks "Obama is going to be on." I had no idea but I was glad she said something. I put it on too. Obama was GREAT, very light hearted and funny, UNTILL...
JL: Now, are they going to put a basketball -- I imagine the bowling alley has been just burned and closed down.
BO: No, no. I have been practicing all -- (laughter.)
JL: Really? Really?
BO: I bowled a 129. (Laughter and applause.)
JL: No, that's very good. Yes. That's very good, Mr. President.
BO: It's like -- it was like Special Olympics, or something. (Laughter.)
JL: No, that's very good.
BO: No, listen, I'm making progress on the bowling, yes.
What's with the LAUGHTER??? They had a light hearted laugh, and so did the audience. Why didn't he quickly catch himself and appologize right then? Is it just me who thinks this or is most of the president's job thinking before he speaks? Am I naive in thinking that not all press conference questions are screened in advance, and that no one was pre-prepped with the questions at the town hall debates during primary season? Shouldn't Obama be well versed in the art of thinking before you speak?
What makes it worse is that 2hrs before the show aired on the east coast a white house spokesperson issued an appology. The show is not live. Again, is it just me or is that enough time for NBC to edit the exchange out? SHAME ON YOU NBC!!! Keith Olbermann & Craig Ferguson agree with me. (for transcript see NewsBusters)
It excites me that when I googled 'obama special olympics' an article on MTV.com was the first to pop up. I'm really starting to like them. The Huffington Post has a poll that is running pretty even, and Good Morning America interviewed Timothy Shriver, head of Special Olympics, this morning (video somewhere). This all so close to End the R-Word Day. 3.31.09. Please spread the word to end the word.
*sigh* All I can do is shake my head...
Monday, March 16, 2009
Sunday, March 15, 2009
Especially when she is attempting to ice skate (left) or climbing up a very old staircase in Israel (right below). Those pictures have absolutely nothing to do with this post, I just like them. This post is about my use of language, specifically the word cripple.
Thursday, March 12, 2009
- I refilled my baclofen last week
- I have the new U2 CD and iPods
- I helped 2 friends to cope this past week. If only I could d0 that for myself...
- I had a GREAT weekend and can finally hang out w/my friends w/o any pent up hostility. I let it all go...
- I have great plans set up for next weekend too
- Oreo is in love w/me :-)
- it is an easy roll to get more deoderant after I realize I've run out of it. Rolling is free...
- my chair has never died on me no matter how far I roll. The battery meter has been questionable...
- it has been VERY warm lately. 75 on Sunday and in the 60's yesterday
- I lost my wallet on Saturday but I have business cards in the front & someone found it & called me & is holding it for me to pick up later today
[image description: red heart that looks like it was done out of paint, with thankful written in cursive inside the heart towards the left]
Friday, March 6, 2009
The Leadership Empowerment Advocacy Project (LEAP) began in 1990 and is supported and funded by the Maryland Department of Health and Mental Hygiene’s Mental Hygiene Administration. Through the years, LEAP has offered an opportunity for mental health consumers to learn the leadership and advocacy skills necessary to make a positive impact on
Each workshop is taught by an expert in their field. Workshops for this year include: Leadership Skills, Advocacy Communication, the Recovery Experience and Concepts, Partnering with Policy Makers: Technical Assistance Needed by Administrators, How to Engage in Changing Mental Hygiene Administration Policies, Federally Funded Wellness and Recovery Models, How to Engage in Changing Federal Policy, Medicaid 101, and Using Medicaid Monies to Support Recovery Efforts.
The LEAP training involves a four day commitment to participate in intensive workshops. The dates of the training are June 22nd through June 25th. The training is provided at no cost to you with room and board included. You must be able to provide your own transportation to and from
For more info contact:
Mental Hygiene Administration
For those of you who aren't familiar w/disability slang/abbreviations, my title stands for Temporally Able Bodied People & People w/Disabilities. Why temporally? Because eventually everybody gets diabetes or cancer or hit by a bus. Eventually everybody will become a crip. It's a fact of life. Although if you've ever seen the documentary Including Samuel, 'people just call it old,' but a crip is a crip.
On Sunday it started to snow. I wasn't sure it was really going to snow b/c it started later then the internet said, but we were supposed to get 7in (we got significant snow, but not 7in). Once it started I went "Oh CRAP!" I haven't gone food shopping since the second week of school b/c I only go food shopping when I need to do my prescription refills and I put that off way too long. If we had gotten 7in of snow I would have been held captive. I'm not walking across campus to get something to eat and my chair can't tackle that kind of snow fall. When the bottom gets wet it shorts and I have to wait til it dries out for it to start again (learned that the hard way). What was I to do? ORDER CHINESE!
So I went out to the lobby where all the take out menus are stored and grabbed the one I prefer. I had to order quick before the snow started to stick. My mother trained me well. Delivery guys do not go out in the snow. What if they got in an accident because of me? How awful would that be? Anyway, I ordered more chinese then I could eat in one meal, in case I really got stranded and decided to sit in the lobby and wait for it.
I don't have a TV in my room and there is a big screen in the lobby. I flipped the channels. P.S. I Love You was on some movie channel. Never saw it but wanted to. About the time I put it on some freshman girls walked into the building and saw it on. One of them had seen it and the other hadn't. They went and dumped their crap off and then came back down to watch it. A little while later their friend (a guy) came over and sat down as well as the RA that was supposed to be on duty (also a guy) at the front desk. The RAs often watch TV on duty b/c you can still see the door from that side of the lobby and that's all they're supposed to be doing--watching the door.
At this point you're probably wondering what this all has to do w/TABs & PWDs. Well I'll tell you. The movie was long and the guy and this one girl asked if they could switch it to Flight of the Conchords at 10. The movie ended in time. I said I'd never heard of it, what was it? Well it's a sketch comedy show & it was weird. As soon as they said that I went "OMG I totally forgot How's Your News? Is on at 10:30. Can we switch it to that after? I missed the last 2 weeks" Sure, but what's that? (see, the connection)
So at 10:30 we switched to How's Your News? I was more then a bit worried in that I was watching the show w/a bunch of TABs I don't know all that well & I was unsure of what their reaction would be, but I wanted to see it so bad I took the risk. Thinking back now for all I know one of them could have a sister w/down syndrome and the other a brother w/autism. Who knows.
[image description: the How's Your News? Logo]
I am very happy to report that the screening went well. They laughed in all the right places (not ROFLMAO type laughing, I mean the show is funny but not that funny) and genuinely seemed to enjoy it. The RA even made a comment that it was pretty funny and wanted to know more about it. YES!!!!! Score one for our team. Even if they never watch another episode again, they still sat down for a half hour one snowy Sunday night and laughed at a bunch of crips making fools of themselves on purpose. Breaking down barriers a few TABs at a time... and all because I was waiting on an order of chinese food...
**What I heard is that the show was only picked up for a six episode series. The How's Your News? folks are asking people to "...take a trip over to mtv.com and let them know how you feel about How’s Your News? We have no idea whether or not we’ll get the chance to make another season of this show, but we do know that feedback from people like you does make a difference in the decision making process. Even if all you do is watch a past episode on the mtv site, that helps us because it let’s them know that people are interested in seeing shows like this on television. Go ahead, make a difference!"**
Thursday, March 5, 2009
- cancer is included as a disability (see post below)
- I have GREAT friends
- my chair didn't die out in freezing cold Baltimore
- my psychiatrist decided to offer all of her canceled Wednesday people Saturday appts and I was able to time it perfectly so that my friends will pick me up from there saving me some cab fare
- The state reduced cab fare starting this past Sunday and the cabbies didn't decide to go on strike as I had feared
- I did laundry this past weekend and have some clean clothes
- although it is way too cold in my room for most of my body, at least my feet have stopped itching in the morning (for the last few years they've itched when just the slightest bit hot and I have yet to figure out why)
- I feel good wearing nicer clothes, which are really my same clothes but I've gotten better at putting my outfits together lately
- I have baclofen stored in a keychain and always w/me
- I have been really well fed for the past 4 days
[image description: red heart that looks like it was done out of paint, with thankful written in cursive inside the heart towards the left]
Wednesday, March 4, 2009
As I mentioned in my last post, I just came from the Leukemia & Lymphoma Society's Maryland Chapter annual Bright Horizons conference which was being held over in the union. The conference is held here every year and is all about childhood cancers. This year's focus was hospital to school transition. It was eh, but it was required for class. Maybe if I was already a child life specialist, or still enrolled in the child life track here, I would have cared more. I dunno. As an aside, I was able to get ahold of a free copy of the video Why Charlie Brown Why? (links to youtube, & there's a book too apparently) although the copy was a VHS and not a DVD.
First there was a Dr from Hopkins Children's who spoke (we are 25mins from there), then there was an educational lawyer who spoke, lastly a panel of all sorts of people (parents, a Hopkins child life specialist, etc). I was VERY excited that both the Dr & the lawyer referred to 'children with cancer and other disabilities.' YES!!! That's one of my big pet peeves--to get people to recognize that medical conditions, diseases, whatever you want to call them, are disabilities in their own right and have just as much impact on a child/family as say down syndrome. The Dr talked some about the cognitive impairments that can come as a side effect of chemo and the lawyer talked mostly about the need to get a child an IEP or a 504 plan who may not have previously been identified, and how to go about doing that, so it makes sense.
However, I had figured the conference would be more focused on younger children, elementary school age. That was not the case. They tried to cover all ages, although both sets of parents on the panel had young children. The lawyer did a good job of talking about high schoolers, accommodations such as an abbreviated school day for all ages, and even touched on the possible need to hire an educational consultant, mentioning ever so briefly on how they could help figure out the appropriate college setting, 2 year school vs 4 year etc.
Um, but in all the talk about the lasting cognitive impacts of cancer treatments and the pressing need to get educational assessments, she didn't mention that colleges have this weird rule that requires assessments to have been done w/in the last 3 years. So I had to mention it. I mentioned the fact that even if your kid has had a disability since they were 6 you still have to get it redone. I forgot to mention that DORS (VR) will give free testing to any Maryland resident ages 16+ free of charge period. That's how they determine eligibility for services, which is why it is always offered even if nothing else is. I believe that is the way it is in all states, although don't quote me on that. I also mentioned something that is particularly important to cancer patients, which is that I think at all schools w/appropriate medical documentation you can live on campus whether or not you are a full-time student. Nobody knows about that. The picture above is of a dorm here on campus. I won't go off on a tangent about what I think about those dorms.
I wish they had broken up into different rooms so that concerns could be addressed to different age groups and/or professionals. A parent of a 6yo might have no idea that they need to go out and get a nueropsyc now, and be thankful and go and do it, but they aren't going to remember that in 10 years they have to get it redone. And there was a school nurse there that was looking for advice about a 7th grader at her school who was diagnosed w/leukemia in Oct. They might have been able to have greater attendance if it was broken up and advertised that way. I thought it was low and would have been very pathetic looking if it wasn't half filled w/students. *sigh* at least they tried and made a pretty decent effort at it. Read yesterday's post. Not everybody does...
Tuesday, March 3, 2009
[image description: b/w clipart of a girl in a manual chair w/her hand raised high]
I feel rather odd not having blogged for a whole entire week. I think I ODed on the whole blogging thing in Jan/Feb and I need a break, even though I wrote down a long list of things I want to blog about (this one not included). Anyway, the post now...
Today I went to the CMS MFP conference (Center for Medicare/caid Services Money Follows the Person) which was down in Harbor East (Baltimore). For my senior seminar in family studies class we have to go to 2 conferences, so this is #1. #2 is tomorrow evening. The Leukemia & Lymphoma Society's bright horizons conference is held in the union every spring. I chose the CMS conference because I have a very good friend who was presenting today who wanted as many Sunshine Folk there as possible, and my other friend and fellow CDRC member works for CMS and was in charge of the whole thing.
The day started by having to get up 2hrs before usual, earlier then I remember getting up in a long time, because the conference was downtown and started at 9am. It was still dark out when I had to get up *whine* and very cold in my room. It was extremely hard to get out from under the covers. So I missed my paratransit ride :-( I can't take a cab into Baltimore anymore because the state cut how far I can get on the discounted rate, and, well, I lost the card again the other day anyway... So in the freezing cold 13 degrees fahrenheit I raced over to the library to use google maps to figure out my route via bus, which is totally free w/a paratransit ID. The route seemed easy enough, but I got totally lost. Anyone who knows Baltimore, I somehow randomly ended up at the inner harbor after I got off the bus, which was good being that I was looking for E Pratt st, but I guessed wrong, turned the wrong way, and ended up at the convention center (off of W Pratt st, totally missed the fact I had crossed over) when the hotel is in Harbor East. I was an icicle by the time I texted someone, turned myself around, and miraculously found my way there. To top it all off, my chair battery was blinking angerly at me on 1 bar this whole time and I was petrified it was going to die. Thankfully it didn't. So I was late, yes, but the requirement for class is only to be there for a minimum of 3hrs.
*sigh* It makes me feel better to get that out.
I went to 3 sessions today. I can't even remember what my sessions were technically on. All the names sounded very interesting except what they all were really about was needs assessing, dressed up in different contexts. Employment, person centered planning, and community organizing. I've done some theoretical needs assessments, in fact I turned one in yesterday for sr sem that everyone in the class has to answer and give back to me, and frankly I've had enough of needs assessments over the years. I've had to do them in too many classes. And right after I just did one, gag me. Even so, I was able to pick up a little tidbit in each session and really did learn something. In fact, I had had a return paratransit ride for 2pm that I canceled during lunch so I could stay for the 2 afternoon sessions.
I've totally gone off from what this post was supposed to be about: the first session. "What about ME!?!?!" The session was about employment & community inclusion. Getting people employed post-nursing home? I dunno, but employment is a hot topic nowadays, so I picked that one. That was not what the session turned out to be about. It was somewhat about SSI and ticket to work, medicaid buy in, etc, but then I stood up, asked a question and totally derailed the entire conversation.
[image description: b/w clipart of a girl wearing AFOs w/forearm crutches (left) talking to a girl (right) w/a backpack on]
"This transition program that you're talking about, is it for students still being serviced by their public schools? Because what about people transitioning from high school to college? I'm 24 (it feels weird to say that), I'm about to graduate, and I feel like we are a very underserved and ignored population."
People thanked me for bringing up the point. I said that I was never in special ed, got rid of my IEP in 3rd grade and had a 504 plan all through school, and there was no "transition" for me. "What about trying to steer students to college? Many students don't realize that they can go to college, that they are capable of it. It isn't easy, it certainly hasn't been for me, it's been 6 years, but many students can do it." There's just things like school systems not realizing that students not in special ed are still eligible for voc rehab funding. Who knew the state pays for crips to go to college?
The state of Maryland I think puts on a big transition conference every fall. I know of the one that happened in 07 because I got on this list after I got my workshop grant. I had wished I didn't have class so I could have gone. I got the thing w/all the sessions on it. There were so many broken up into all sorts of categories. Pediatric to adult health care transition, school to employment transition etc. I was particularly impressed by how much they had geared towards health care. But, there was nothing in all of those sessions covering transitioning to a higher education setting. Not even one. It got me enraged, just as the session today ticked me off unintentionally (although more so because that conference had been completely organized by our state's voc rehab). If voc rehab doesn't even know what to do w/the kids whose educations they're going to be footing the bill for, then, well, we're all doomed.
Another thing, it seems as though a lot of the honest to g-d professionals that were in that room w/me had gotten into their field as a byproduct of having a crip kid. Which was totally cool because they were so passionate about what they were doing on the policy level even. But one of them mentioned how the expectation that professionals (mainly drs and such) have for kids very early on in life is projected onto the parents who are then completely brainwashed by the time their kid is 18 that they truly believe that their kid is incapable of working (which by and large is not the case). So then, um, the kid believes that too of course.
Another parent-professional brought up how important it is to get the parents involved, to get them engaged, to get them totally on board with this 'hey your kid is going to go out and get a job' thing. Ticked off lately by some conversations I've had recently with the person who runs the 18-21 high school to work program right here on campus, I had to say something to that of course. I had to say that I semi-disagreed w/her. "What about getting the student involved? It's more important to get the student involved then the parent. I mean, yeah, parents are important too, but your other child all along gets other messages about planning post high school and figuring out what they want to do w/their life. Do that. The students need to believe that they can do something even more then their parents do."
Sheesh. Treat your special ed students like they're no different then their regular ed peers and they will be. Treat them like they should have goals and aspirations that are just a little bit of a reach for them, and they will meet those goals, just like most other students. By golly, even some students who have spent the majority of their time in special ed or in inclusion settings with tons of intensive pull out services can go on to college. It is possible. I've heard the stories. Refer to The Short Bus. Work with both your special ed and regular ed students w/disabilities to find strength-based strategies that will help them to be successful in life. Strategize and problem solve with them. As the guy said today in the community organizing session I went to, don't come at a problem w/the answer and try to fit the problem (or fabricate a problem) into the answer. Come at the problem w/a question. Or questions. Seek out the answer and then ask some more questions if you have to. Then the solution will actually work. What a concept!
I wish I could attach a flow chart here. Ask yourself, 'can this kid go to college? Do I think they might be able to succeed?' That is the essential question. If the answer is no, ask yourself if there is even the tiniest voice in the back of your head that says maybe. If the answer to that is yes, or if the answer to the first question is yes, then you have come up w/your problem. How? How can we make sure s/he succeeds? Start asking yourself, the kid, their parents, their outside support system, the professionals they work with. The kid in particular might have no f*cking clue. Their shrink is a good place to start in figuring this out. Refer to the bottom of my blog roll. Everyone Needs Therapy. I truly believe that.
I went through freshman year failing everything, but surrounded by people who wanted to help me. Except that they kept waiting for me to be self-directive; to tell them exactly how to help me, exactly what to do. I didn't know. I was in uncharted territory that year. I'm all for person centered planning. It works way better then systems centered planning. But sometimes (most of the time) it needs to be a collaborative effort between the client and the professional. Get down and dirty in the trenches with your client. You need to be on equal footing with them. As a professional don't assume that you know better then your client. You don't. Who could possibly know better what is best for me then me? Help your client to fill in the gaps. Strategize with them, facilitate.
As the guy in the person-centered planning session said, you have to look at what is important to your client as well as what is important for your client. For example, it may be important to your new crip college student to make friends, establish social connections. But, it is important for them to go to class. That's what they're there for. Don't discredit your client's need to have a social life and tell them that the only way for them to ever graduate is to live their life for the next how ever many years in the library like a recluse. Help them to find their best balance between socializing and studying. Based on that particular student and their disability issues this may mean altering their course load in order to accomplish both goals. That idea may be unsettling to you at first, or the kid, or their parents. But work your way through that--or send them to a good shrink.
But above all, just start thinking about kids like me. Start discussing kids like me. Keep them somewhere in your mind, even if it is not the very front (hey, we all have to start somewhere). We're out there, we exist, and we need just as much person-centered strength-based goal direction as the next kid. We're not in special ed (or we are, but we're more high functioning then your "typical" special ed student) but we need more specific, more custom tailored person-centered plans then regular ed students. We're lagging behind because we're being left to fall through the cracks (someone please correct me if I am wrong and this is not as dire as I am presenting). It doesn't have to be this way. We don't have to struggle quite as much. Just do something.
*off my soapbox* If you like my clipart go to
There is never enough good crip clipart to go around. I have such a hard time finding it when I need it. Found it by accident tonight, wasn't looking.