Disbelief! (a Repost)

I was going through some old posts, and my linked within widget lead me to the below posted college entrance essay, originally written in 2003. I wrote it for the MC Scholars program (I didn't get in). You had to write the book jacket from your memoir you just finished in 2025, when I am 40. I thought I'd repost in honor of the fact that for the second time in just over a month I participated in the beginning stages of writing disability related federal legislation that will affect the lives of millions of people. Today was related to the Caring Across Generations campaign, in June it was the latest version of the CCA. At the time I never in my wildest dreams thought that would really happen. The original post has a bit more on how my life is really turning out vs what this says would happen.

Triumphs Over Struggles: The Ups and Downs of Life with Cerebral Palsy is an ordinary book about an ordinary person who fought for ordinary things. It is the autobiography of Cheryl *censored*, a wife, mother, and social worker at Gillette Children’s Specialty Healthcare, a hospital that services pediatric orthopedic and brain disorders exclusively. She has spent her whole life fighting. Although most people associate segregation with the 1950’s and 60’s, the 1980’s and 90’s were filled with just as many battles for Cheryl. It was the age of the Americans With Disabilities Act, but Cheryl was still continuously denied access to life. She fought for both the right to attend a local preschool as well as her neighborhood elementary school, which contained 32 steps down to the playground. An avid horseback rider, Cheryl was also almost refused the right to attend a local horseback riding day camp.

Besides all of the adversity Cheryl has faced in her life she has been able to triumph over it all. Cheryl endured eight reconstructive operations on her legs during her childhood which resulted in her having to relearn how to walk four times. Through all of this, Cheryl, whose parents were told would never amount to anything, remained an honor student in school. She attained her associates degree in psychology through Montgomery College’s Scholars Program and then finished her bachelor’s degree through Hofstra University’s Program for the Higher Education of the Disabled (P.H.E.D). Cheryl later received a master’s degree in social work at The University of California, Berkeley.

Through her advocacy for people with disabilities, Cheryl has made a significant impact on the education of mainstreamed disabled students. Cheryl started lobbying local disabled rights organizations in college. Since then she has been interviewed by many media giants, such as NBC’s Today Show, Good Morning America, and The New York Times. The Cheryl *Censored* Education Act is a Federal education bill aimed at setting a national standard for the education of students like her. It is currently being reviewed by the House Education Committee.

Cheryl lives in the suburbs of St. Paul, MN, with her husband Matt of twelve years and three adopted special needs children, April, May, and June, ages 9, 8, and 6, whom she has had since infancy. She has two dogs, Eloise, and Puck; a cat, Mizzy; and a horse, Apple Blossom. Cheryl and Apple Blossom are in training for the 2028 summer Paralympic Games in Rome, Italy. They have won many ribbons for dressage in both local and national disabled riding shows. When not in training, working in the hospital, or lobbying Congress, Cheryl enjoys shopping, running 5ks for charity, and working as her synagogue's high school youth group advisor.

Moms & Botox: What's the Deal? Or, Botox is Relatively PainLESS (and Botox Day is Like Christmas)

I've been meaning to post this since October when Tanis posted about Jumbly's botox appointment. She called the post The Steel-Toed Boots of Motherhood. I read it and thought about other moms that have written about botox, like Ellen and Kathryn. All three of their children have cerebral palsy, all three write about their children's botox appointments with angst, and I wonder why. I am somewhat flummoxed. I thought I wrote a post over a year ago, Botox Day: It's Like Christmas, but apparently I never did. OK, I don't know anything about Christmas (remember, I'm Jewish), but as my appointment gets near I start counting down the days.

In her next post Tanis writes that the day of the appointment was a soul crushing day for her. In 2009 Ellen wrote about being scared for Max. I don't know why Max's doctor puts him under general anesthesia for botox, I've never heard of that. I have heard of using conscious sedation for little children, like what was done with Ellie.

Kathryn thinks that people who think botox is not painful are out of their mind [look at the picture below, it's a teeny, tiny needle]. Jenni and I must be out of our minds then. Kathryn, have you ever had botox? How do you know? She seems to think that the pain produced from a botox shot is 100x worse then a tetanus shot. No, Kathryn, it's not. Tetanus shots are worse. To me, botox shots hurt about the same or less then a flu shot.

I understand that these kids are 7 and 8, and that when I first started getting botox regularly I was 20. I did have botox a few times when I was somewhat younger and unconscious, during surgery, but doing it that way makes it hard to determine whether improvements are from botox or surgery. I also had botox once when I was 18, although hardly any, I think just in my thighs and opted for the numbing cream.

I fully support the use of numbing cream, conscious sedation, distraction like bubbles or I Spy books, or sheer bribery like ice cream, money, or a trip to the toy store for little kids. I might suggest calling in a child life specialist. Getting upwards of 8 shots is a lot for a kid to take. I would have been a wreak at 7 and 8. But for the last five years I haven't opted for anything for pain management. Botox is my pain management. It's a g-d send. I just don't have the patience for EMLA. Having to wait for paratransit to take me to/from my appointment tries my patience enough. Waiting for Emla to kick in might put me over the edge.

OK, OK, I'm being rather misleading. Botox is injected all over my body every 6 months. I get it in 8 muscles, and because they are rather large muscles my physiatrist spreads the shots out and injects more then 1 spot. Of course I feel it. Of course, just like getting blood drawn or a flu shot, my natural CP reaction is that my whole body tenses up even before the needle even hits my flesh. Try telling someone with spastic CP to relax. It ain't happening.

Fortunately, I was told by Dr Gormley, of Gillette, that in the case of botox, tensing the area actually makes it easier for the physiatrist to find / access the correct muscle. Score one for spasticity! Of course it hurts when the needle is in my flesh, but as soon as it is out there is no longer any pain. It doesn't linger. I don't walk out of the hospital in pain. There is some very minor discomfort, but as my current physiatrist suggests, going for a walk afterwards not only helps work the botox into your muscles and helps it to take effect sooner, it also makes that discomfort go away sooner. What do you do if you can't walk? I don't know. Ask your physiatrist.

I always wonder why my doctor always has this look of guilt or something on her face when she is giving me botox. I'm sure the look on my face isn't pretty. I do always utter multiple OWWWs during the appointment. But I always wonder why she doesn't focus on the tremendous amount of pain that she is saving me. Or why she doesn't focus on the giant smile that I'm sure is plastered on my face most of the times she walks into the room. She's there to give me BOTOX! I'm a botox junky. Dr. Alter is one of my favorite people. She's totally got me strung out on the stuff :-)

She should hear the way I talk to other people anticipatorily about botox, with that smile on my face. Or maybe I should tell her that in the weeks leading up to "botox day" I go to bed thinking about botox the way most Christian kids think about Santa Claus (I think I have told her that actually). I'm sure little kids getting botox don't think of it this way, but I know of at least one other person my age (coincidentally a patient of Dr. Gormley) who looks forward to it, although I'm not sure if she looks forward to it as much as I do.

So I wonder why these moms look at botox with such angst, while I look at it as somewhat joyous in a way. Yes, I am injecting diluted botulism all over my body, almost from head to toe (from shoulder to calf), and yes, I'm fully aware that botulism in it's pure form is a lethal form of food poisoning, having done a report on it 8 years ago for 11th grade chemistry class. But the pain I otherwise have, especially from panic attacks, is unbearable. Although I'd like another option, I've rationalized the food poisoning. Why can't mothers?

True Story Tuesday: Smell Like a Turkey Sandwich

Click on the picture to see the others

I'm a fan of the show Private Practice, and for those of you who don't watch, the character Charlotte has had her arm in a cast the past 3 weeks after a beating during a brutal rape. Seeing her in the cast has had me thinking of turkey sandwiches, so I thought this would be a good story / tips to share during Thanksgiving week.

When I was 17 I had 2 surgeries over one summer so that I only had one foot in a cast at a time, instead of both at once like in the picture, right. They were the only times I've ever had summer surgeries, so we weren't really thinking when we decided it was a good idea to go to see fireworks on the 4th of July in 90+ degree weather with my leg in a below the knee cast. You sweat a lot in 90+ degree heat even when you're not in a fiberglass cast. Mix that heat with the heaviness of a fiberglass cast which has been on you for about 2.5 weeks or so, and dead, gross, nasty, sweaty, ITCHY skin ensues. And it doesn't go away.

I would not recommend spending anytime outside in a cast in the summer. It was itching so bad all that night and the next day that I was crying because it WOULDN'T STOP. My mom called the hospital and said she just didn't know what to do with me, she felt so bad. She talked to my surgeon's assistant, who is a nurse and an absolute genius. He said #1 to give me lots of benedryl, which I am very sensitive to so I passed out for the rest of the day. #2 he said to get an ice pack and put it on my thigh of that leg. I wouldn't recommend using ice in a baggy, as when it melts the water could leak and drip down into your cast. Use one of those fake ice blocks.

[Love my non-scanner, taking a picture of a picture with my phone skills? This is a very unflattering picture of me after my most major surgery, done at Gillette when I was 13. Bad picture, but the easiest to find.]

Your brain can't process both stimuli at once, it gets overloaded, and so you both stop being itchy, and your thigh doesn't feel cold. I would keep thinking that the ice block needed to be replaced, that it had thawed, would put my hand on it to take it off, only to find that it was still plenty cold. IT WORKED SO WELL, I had ice on one leg or the other for the next 3 months.

What does that have to do with a turkey sandwich you ask? Nothing. That's cast tip #1. Cast tip #2 is that I went back to Minnesota to have that cast taken off and have the next surgery done. After getting the cast taken off, I was waiting to see the doctor, vigorously finally scratching at my leg [FREEDOM!] and all it's nasty flaky skin, when the surgeon's assistant came out to get me. Me with the nice pile of dead skin on my wheelchair footrest. I was scratching so much so hard that I was giving myself a rash.

What did he say to do? He said to go out and buy a small jar of Miracle Whip (he said this only works with Miracle Whip, and I have no comparison experience with which to dispute) and slather it on my leg and leave it there for a bit. Wipe it off and presto, all the dead skin comes off with it. Who came up with this? I have no idea. But IT WORKED, so much better then the soaking I used to do after my other surgeries. Worth smelling like a turkey sandwich for a day.

CURE PITY!

I realized the other afternoon that it's October, disability awareness month, it's 2/3 over, and I've done nothing for it. We can't have that! So without further ado, here's a video from Gillette Children's Cure Pity campaign. There's a bit of subtle ableism in there, but I still think it's great.

Tomorrow is Miracle Treat Day

Ok, so those pics don't match up, but whatev, they say:

Buy a Blizzard Treat at a participating DQ® location on Miracle Treat Day and $1 or more per Blizzard Treat will benefit your local Children's Miracle Network Hospital. You'll be helping to save and improve the lives of children in your community! Visit MiracleTreatDay.com to find a participating location.

If you're in Minnesota you'll be helping my favorite CMN hospital, Gillette Children's Speciality Healthcare. If you're down by where my mom is, you'll be supporting Children's National Medical Center in DC.There is a video that takes place at Gillette on the the Miracle Treat Day site. Check out the 2nd video. I don't know if there's another, this is the only one I've watched.

On Rolling Access Funds

All the way back in Feburary I trekked to Annapolis to attend 8hrs of budget hearings. I don't know why I am just writing about this now, over a month later. Due to snomageddon and hearing cancelations, budget hearings had to get smushed to my benefit, although I feel bad for the Secretary and Deputy Secretary of DHMH. It turns out that the developmental disabilities administration (DDA) had its hearings in both the senate and house and mental health administration had its hearing in the senate back to back with an hr lunch break. 9am, 1pm, & 3pm. It also turns out that they went longer then 8hrs. Needless to say it was a LONG day for everyone. I had to guess what time to schedule my paratransit ride for and apparently 5pm was too early. They were still going when I left....

I wanted to focus this post on one program I learned of in the course of the day, a program that I had never heard of, but has been in existence for 20+ years. It's called Low Intensity Support Services (LISS) but until somewhat recently was called rolling access funds. LISS provides one time funds up to $3000 to assist individuals with developmental disabilities in meeting their needs in the community. According to one of the provider's websites, you must

(1) Be a Maryland Resident - Be a verified resident of Maryland (COMAR 0.22.12.05)

(2) Have a Developmental Disability—The individual appears to have a developmental disability, or does not appear to have a developmental disability, but may be eligible for individual support services in accordance with Health-General Article, 7-403 ©, Annotated Code of Maryland (COMAR 10.22.12.05)

(3) Currently not receiving any DDA funded residential services with the exception of Resource Coordination.

Note: Individuals enrolled in a Medicaid waiver program (i.e. Autism Waiver, Living at home, etc.) and children within the Maryland school system should have their needs met by that service system.

This program seemed to be the focus of the DDA senate hearing because the committee chair had recently gotten a call from a constituent who was distraught. According to the regulation (which is not listed on the DDA LISS site) an individual is entitled to apply for LISS funds yearly as long as it is not for the same service. For example, in 2007 you could apply for money to use for respite services for your autistic son so that the rest of your family could go on a 2 week vacation, and that would be it for respite funds, but in 2008 you could apply for LISS funds to purchase and install a sensory swing in your basement.

Now though, due to our budget crisis, DDA arbitrarily decided after 20+ years that instead of being eligible to apply for LISS funds once per year, an individual is only eligible to apply once in their lifetime. The constituent had been turned down for funds, was told that his daughter had used them up already and was frantic. The thing is, neither the DHMH Secretary (the department DDA is housed under) or deputy secretary knew what the regulation was, and when looked up it clearly stated once per year, thus they had no legal right to change the eligibility criteria without first getting the regulation changed. It was quite humorous listening to them try to defend their decision.

I'm writing about this because I am outraged. I am outraged that PWDs and their families aren't told about the services they are entitled to over and over again. Growing up we didn't have a lot of money and often struggled to pay for services I needed that were not covered by insurance (which would have been eligible for LISS). In 9th grade when my back hurt so bad I could cry we could have used LISS funds to pay for my twice weekly massage therapy appointments at $60/hr $120/week. In 12th grade we could have applied for LISS funds so that I did not have to stop horseback riding (also $60/hr) after my parents separated and the divorce lawyer got my horseback riding money. Horses are integral to both my mental stability and spasticity management and that could have kept me out of or lessened the impact of the decent depressive episode I experienced that year (still bitter that my BP got misdiagnosed as ADD for several years).

Heck, we could have used LISS funds to pay for our hotel bill when I had that 2 week stay in MN for my gigantic surgery, and the following year we could have used them to pay for the airplane tickets. Who knows what we could have used LISS funds for when I was itty bitty. The program was around in the 80s.

I was under the impression that LISS funds could only be used for children, but after looking up the program found that this is not the case. It is nice to know that if the program should ever get back on track (g-d forbid it is ever eliminated) it will be there for me should I need. Maybe one day I will have a job and buy a condo and, as I don't anticipate ever exceeding the income limit, I could dip into the LISS program to assist me in obtaining a universally designed kitchen :)

CP Alters Your Cardiovascular System

About a month ago Ellen wrote a post about how max is super skinny. Max has oral coordination problems and she was wondering if he isn't eating enough. I responded that a high metabolism comes along with spasticity and went into detail. I wonder what people think when I write comments that are longer then the post. The tighter your muscles are the more calories you burn. Even just sitting on your butt. I learned this when I had my first gait lab experience at Gillette. Tight muscles need more oxygen and that means your heart has to pump faster to keep up with that increased need, and well you can eat a whole lot. It explains why my resting heart rate is in the high 80s-low 90s.

Before I had my big surgery I ate TONS. I don't know how my mom kept up with the grocery bill. I also have a former roommate that ate bowls of ice cream for dinner and chugged Hershey's syrup out of the bottle and couldn't gain an ounce. She's super skinny, has been always. This isn't to say that someone who has increased spasticity can't gain weight/be overweight. That is an equal probability it seems from what I've gathered. If you have a harder time getting around, especially if you're a full or part time wheeler, you just don't have the opportunity to burn it off. It all depends on many factors. This drove me crazy for years, but now I just don't care anymore.

This brings me to a question I've been meaning to pose on here for a long time. I run. I LOVE TO RUN. I've been told it's bad for my joints, that I put 3X the force on my ankles as opposed to able bodied people, but I don't care! Except, well, I've always wondered if I'm doing damage to my heart. The heart rate monitor on the treadmill often reaches 200bpm and I've always assumed it's actually higher--that the machine just doesn't go that high. My thinking though is that you're supposed to double your resting heart rate when engaging in cardiovascular exercise and being that my resting heart rate is 92 lets say and that it's oh, about 124 just walking at 1mph, I SHOULD keep my heart rate that high.

I breathe so heavy, get bright red, guzzle tons of water, take what seems like forever to get back to a normal rate of breath. Is that ok? Don't just say no, substantiate your opinion. Any cardiologists read my blog? I'm wondering if the heart just isn't designed to work that hard and if I am going to wear it out at a young age. Should I be worried? Or am I paranoid as usual?

If You Live in MN Gillette Needs Your Help

Here is an email I got from them:

We need your help.

Over the coming weeks, the State House of Representatives will be reviewing Bill 2568. This bill was authored by 39 Representatives in support of providing funding for Gillette to expand our surgical facilities to meet current, and future, patient needs.

Did you know that, currently, Gillette has only two surgical suites that are able to accommodate the complex, multi-specialty surgeries that so many of our patients need. And yet, each year, we perform more than 3,300 surgeries.

All we are asking you to do is help us say, "Thank you." If you click on the "Take Action" link, you will find a sample email message you can send to your State Representative.

We hope you will join us in thanking them for their support of Gillette and remind them why Gillette is important to you and your family.

Thank you.

My View

I was thinking just now of board games. For months I've been meaning to stop by Target and pick up some UNO cards to donate to On Our Own. I don't know why I never got there when the weather was nicer. It's a 20min roll in the chair or a quick bus ride. I even went to another store right there once and forgot. Well last weekend friends of mine were driving there so I tagged along. Now I just have to remember to bring them. I also ended up buying Farkle, a dice game I've become addicted to playing in its online form. UNO is theirs, Farkle is on along term loan, meaning I can take it back whenever I feel like.

Anyway, so I was thinking of board games and my mind wandered to SNATCH, a game I haven't played in years. People would like it if I even knew where it was, remembered how to play. My mind wandered to bringing it in, people asking where I got a game no one's ever heard of. "I got it in a game store in Mall of America. I forget when. One of the times I was there, 1999 or 2002. I think 2002."

One of the times??? People look perplexed always when I tell them I've been there 6 times. Ever play the ice breaker game 2 truths and a lie, where just like it sounds, you go around telling 2 truths and a lie and people have to guess what the lie is? Some standards, I've been to Mall of America 6 times, I grew almost 2in in 7hrs (from surgery, but I leave that part out), and when I was younger I wanted to be a figherfighter (someone once thought that was true). The Mall of America is in Minnesota, and remember I live in Maryland. That's 2/3rds of the way across the country. Who would go there 6 times? It's a mall (with a tiny amusement park and an aquarium inside). My orthopedist was at Gillette. I had 4 surgeries there, and went for 2 just visits. I will always hold a soft spot in my heart for that hospital as odd as that sounds.

Every time we went we spent some time at the mall. My surgeries were always on Tuesdays so I could be scheduled for appointments, xrays, etc on Monday and we always scheduled Sat flights just in case. We had time to kill on Sunday, so we went to the mall. The first time we went to Gillette we tacked a few extra days onto the trip to do some sightseeing. We ended up just seeing the mall, spending 20hrs there over 3 days. My grandma has to touch everything... Eventually we got it down to just 6hrs in one day, hitting up must sees like the Italian restaurant Tucci Benucch (MMMMMMM........) In all those trips I've never been to the aquarium. We always saved it for if we have time, and the people who actually walked the mall got worn out.

My view is if you have to have surgery you might as well have some fun in there too. It's possible to do both, even in a hospital where there are therapy dogs and playrooms to balance out the pain. And a great cookie store at the mall :-) Is it wrong to on some level look forward to going for surgery? I think not. I think that's the way it should be.

One Sentence Journal

From clicking I got to this post about one sentence journaling. I feel like it is a concept somewhere along the lines of Thankful Thursday (the official blog), although different. As I'm coming to the end of my goal of Thankful Thursdays for 2009 (I have 28 out of the 39 I set for myself and 16 more Thursdays in the year) I wonder if I want to switch it up a bit and work on one sentence journaling in 2010. I would write one sentence a day and post all the ones for the week in one post every Thursday (to maintain consistency). What do you think?

[image description an Anne Taintor journal with the quote "medicated and motivated." I have the mug and apparently this design comes on all sorts of things like pill boxes (duh), key chains (I want one), and even flasks (?!?!?!)]

Oh, and PLEASE go VOTE for GILLETTE (the hospital's official site). We've suddenly, tragically dropped to 15th place. I thank you for your 10 votes every day.

Thankful Thursday

This week I am thankful because...

• Gillette has jumped all the way from 28th place to 13th! VOTE GILLETTE!!!
• I have not had 1 panic attack or nightmare these 1st 2 weeks of school.
• I'm learning that peer support is just as helpful as paying someone and way more convenient--you don't have to wait a week to see a peer!
• the 48 runs on time.
• I found someplace I might be able to ride (if they call me back and I find out it's cheap enough).
• I learned a lot about video games & infant massage/relaxation techniques at the Hopkins CL conference (& got credit for a class assignment for attending).
• I finally got the balls to unplug the TV last night.
• I am able to play internet radio right now.
• my chair still hasn't died in the middle of the street... someday soon...
• of my WONDERFUL apartment.

Quote of the week: "The difference between the right word and the nearly right word is like the difference between lighting and the lighting bug." ~Mark Twain

Oh, and Sept is Leukemia/Lymphoma/Myeloma awareness month according to the LLS as posted on my newsfeed.

Some Child Lifey Things

Chicago Hospitals Hold Pre-Surgery Tours to Put Kids at Ease

Glad I'm not the only person in this world that thinks hospitals are fun, although the surgery part, not so much... Seriously though, this is something that is becoming the norm but is not quite the norm yet. You know your kids (if you have kids that is). If this is something that is not offered to you that you think would be helpful, by all means, DEMAND IT!

Swine Flu Poses Risk to Kids with Neurological Conditions

What about adults with neurodevelopmental conditions? Should I be worried too?

Gameroom Give-Away

Microsoft has partnered with Children’s Miracle Network to provide three Children’s Miracle Network pediatric hospitals an Ultimate Gameroom experience - and they need YOUR HELP to decide which three lucky hospitals will receive this great giveaway and better yet, YOU could win an Xbox 360 as well!

Cast your vote for the Children's Miracle Network hospital of your choice, each time you vote you will be entered to win an Xbox 360 - the more you vote, the better your chances of winning!

You get 10 votes per day each day from now until October 16th. Vote all 10 for one hospital or spread them around. Not to trash talk Hopkins (it really isn't my goal) but I know for a 100% certainty that they have so many XBOXs that their IT guys are on a 1st name basis with guys from microsoft. So if you're in Maryland, DON'T vote for hopkins. They just got a whole bunch of new Xboxs through projectHOPE for a research study. They don't need any more. Vote GILLETTE in MN. You can't understand what Gillette does for kids/this room will do for kids unless you've been a kid there.

The Book Jacket to my Memoir (written in 2003)

For some odd reason I felt compelled to visit my geocities site that I started in the 7th grade and hasn't been touched in years. Good thing I did because it turns out that Yahoo is shutting geocities down in Oct and deleating everybody's stuff. There's stuff on there that I want (like below) and will have to put on my laptop.

I signed into my account to look at my extensive clipart collection and saw a file essay.html What's that??? Something I don't ever remember writing, but I apparently posted the admissions essay I wrote to get into the MC Scholars program (I didn't get in). You had to write the book jacket from your memoir you just finished in 2025, when I am 40. On my website I wrote "this is the fakest thing that I have ever written in my life. Wouldn't it be great if this happened in the real world?"

Triumphs Over Struggles: The Ups and Downs of Life with Cerebral Palsy is an ordinary book about an ordinary person who fought for ordinary things. It is the autobiography of Cheryl *censored*, a wife, mother, and social worker at Gillette Children’s Specialty Healthcare, a hospital that services pediatric orthopedic and brain disorders exclusively. She has spent her whole life fighting. Although most people associate segregation with the 1950’s and 60’s, the 1980’s and 90’s were filled with just as many battles for Cheryl. It was the age of the Americans With Disabilities Act, but Cheryl was still continuously denied access to life. She fought for both the right to attend a local preschool as well as her neighborhood elementary school, which contained 32 steps down to the playground. An avid horseback rider, Cheryl was also almost refused the right to attend a local horseback riding day camp.

Besides all of the adversity Cheryl has faced in her life she has been able to triumph over it all. Cheryl endured eight reconstructive operations on her legs during her childhood which resulted in her having to relearn how to walk four times. Through all of this, Cheryl, whose parents were told would never amount to anything, remained an honor student in school. She attained her associates degree in psychology through Montgomery College’s Scholars Program and then finished her bachelor’s degree through Hofstra University’s Program for the Higher Education of the Disabled (P.H.E.D). Cheryl later received a master’s degree in social work at The University of California, Berkeley.

Through her advocacy for people with disabilities, Cheryl has made a significant impact on the education of mainstreamed disabled students. Cheryl started lobbying local disabled rights organizations in college. Since then she has been interviewed by many media giants, such as NBC’s Today Show, Good Morning America, and The New York Times. The Cheryl *Censored* Education Act is a Federal education bill aimed at setting a national standard for the education of students like her. It is currently being reviewed by the House Education Committee.

Cheryl lives in the suburbs of St. Paul, MN, with her husband Matt of twelve years and three adopted special needs children, April, May, and June, ages 9, 8, and 6, whom she has had since infancy. She has two dogs, Eloise, and Puck; a cat, Mizzy; and a horse, Apple Blossom. Cheryl and Apple Blossom are in training for the 2028 summer Paralympic Games in Rome, Italy. They have won many ribbons for dressage in both local and national disabled riding shows. When not in training, working in the hospital, or lobbying Congress, Cheryl enjoys shopping, running 5ks for charity, and working as her synagogue's high school youth group advisor.

This is so bizzare. Bizzare in the fact that I found this during the time I am taking memoir writing class, and bizzare in the fact that I must have always known myself so well. It turns out this was not as far fetched as it seemed to me when I posted it on my site 6+ years ago. My goal still is to write "an ordinary book about an ordinary person who [struggles with] ordinary things." That's what I'm trying to do right now in fact.

It turns out that I went to Hofstra 1st, flunked out, and then went to MC 2nd. Going to social work school is still in the master plan, although not all the way in Berkley (I picked that b/c I was under the misguided assumption that Berkley was the mecca of disability rights, turns out Chicago is). I'd be more then exstatic if I got a job at Gillette some day. I'm never going to be a paralympic athlete, but it's interesting to note how prominate a role pets play in this essay. I guess I've always known how integral pets are to my mental health (what other term can I use? I hate that one). And running. Somebody at OOO mentioned Friday about getting a group together to start walking and signing up for a 5K. So I may do one. Dunno if I'm up for it or not. I don't know why I put down 8 surgeries, the count is 7, it was 6 then, still haven't done the last 2...

The part I thought was most unfathomable when I wrote it is "Cheryl started lobbying local disabled rights organizations in college." Me get involved in politics? Yeah right... Turns out that I did get involved in politics in college (see the CCA tracker to the right). Within the last year I've lobbied on both the state and national level. Who woulda thunk it? Get involved with ADAPT? Not me. They're too weird :D No one's ever going to attach my name to a bill, but I am going to work to finally get the Disability History and Awareness Month bill passed which will change the way all children, teens, & young adults are educated, both disabled and not. I am going to have an impact like I never thought I would. How cool.

3 Posts in 1--All About Awareness

If I can use this blog to drum up support for local political causes in Maryland...

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.

Kids at Gillette Need Your Help!

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.

http://gcf.convio.net/site/PageNavigator/House_Bonding_Campaign

[image description (top of section): the Gillette Children's logo]

Tomorrow is "SPREAD THE WORD TO END THE WORD" Day

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?

I did see this that I will watch if I have a chance (or even remember):

Spread the Word to End the Word online youth rally

Live stream at http://www.schooltube.com, 12:35 PM Eastern Time.

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.

[image description from top of section: 1st line-spread the word 2nd line-to end the word 3rd line-3.31.09 4th line-www.rword.org ; all in shades of blue w/a white background]

AND LASTLY... Remember to watch Table for 12 TONIGHT

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...