Stem Cell Research Trial Beginning January 15, 2014

Beginning on January 15, 2014, the University of Texas at Houston will begin a clinical study on 30 children with Cerebral Palsy (CP). Patients will be between the ages of 2 and 10 and the study will last one to two years.Here’s the story on one participant, 10-year-old John Drambel. 

 This is a landmark study because the patients are receiving stem cells cultivated from their own hip bone marrow. Up until now, the only stem cell studies on people with CP in the United States have been done with patients given stem cells from their own banked cord blood. This is very exciting – and long awaited!

If you’d like to find out about other research topics or possibly be a part of a clinical trial you can find them at http://clinicaltrials.gov/

Subminimum Wage for People With Disabilities Debate

As part of the New Deal of the 1930’s, subminimum wage was allowed for people with disabilities. Employers can apply for waivers under Section 14(c) of the Fair Labor Standards Act. Rates for workers with disabilities are decided upon by comparing what their productivity level is to that of an experienced worker without disabilities.

Advocates against subminimum wages believe more money should be spent on training programs that are more creative and provide more challenging work than wrapping plastic ware at restaurants or folding boxes, repetitive task work that is common amongst employed workers with disabilities.

Here are some pros and cons to the consider:

FOR Subminimum Wage - work provides training for better, higher-paying jobs - jobs give individuals structure, keep them busy - working at any job challenges individuals - eliminating subminimum wage would mean employing fewer people within a population that already has a very high unemployment rate - a subminimum wage is better than no job at all

AGAINST Subminimum Wage - people get stuck in their job for years and never advance or leave - low pay is unjust - people with disabilities are not fully integrated into the workforce - allows for abuses against people with disabilities - stigmatizes people with disabilities

Here’s a great article on this topic: http://www.utsandiego.com/news/2013/Dec/22/tp-subminimum-wages-for-disabled-scrutinized/2/?#article-copy

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WHERE DO YOU STAND ON THIS DEBATE?

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Assistive Technology Assessment is an Important First Step

Because of technology, an 11-year-old girl who can’t physically hold a pencil is on the honor roll. If not for a $200 word processor called a Forte who knows where she would be! Not only does it give her the ability to keep up with her fast-paced 6^th grade class, it’s cool and sleek so it gives her a “coolness factor” among her peers. I would argue these are the top conditions that need to be met when picking out appropriate technology for individuals. (You can read that article here: http://www.azcentral.com/news/arizona/articles/20131216assistive-technology-aids-special-education.html?nclick_check=1 )

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It’s important to remember to assess needs at an individual level before jumping straight to a tool. Too many times, students (and adults) are hooked up with a great piece of equipment that doesn’t provide them with what THEY need. There is a process, and anybody in the disability world is too familiar with how long these processes can be, but in this case it’s super important to follow through with a thorough assessment to ensure getting the best assistive technology possible.

For tips on how to do these assessments, check out The Assistive Technology Playground by my peer Marvin Williams.

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Medicaid For People Who NEED It

When we hear “Medicaid” many imagine a lazy, non-working individual, sitting at home watching Jerry Springer and Maury. But the fact is, 70% of Medicaid spending goes towards people with disabilities. According to a U.S. Census Bureau report released at the end of 2008, there were 54.4 million Americans living with at least one disability in a census taken in 2005. This means roughly 1 in 5 people are disabled. Of these 54.4 million, 35 million had a severe disability. These individuals needed assistance in performing activities of daily living (ADL) such as getting into or out of a chair or bed, dressing, bathing and eating. In many cases, assistance is also needed for other activities such as shopping, paying bills, using the telephone and light housework. (Americans with Disabilities, 2005)

Imagine not being able to get yourself to the bathroom or not being able to get yourself out of your own bed. What would you do if you were hungry but could not even make some simple toast for yourself? Are you going to be able to move your mom or dad into your home and care for them if they break a bone or develop dementia? These are some of the things that Medicaid can possibly pay for (or at least a portion of it). Being that it is so many peoples’ lifeline, why is it that when our government needs to tighten up the budget, they look to those who need the most to give the most? Cuts are being made to Medicaid on a regular basis and the health and well-being of our most vulnerable citizens is being threatened.

“Why don’t they just go get a real job” is commonly heard coming from the mouths of the able-bodied clueless. But I am here to tell you that Medicaid serves the type of people who can’t “just go get a real job” because they have disabilities that block them from doing so. In the 2005 census, less than half of the disabled population between the ages of 21 and 64 were employed. (Americans with Disabilities, 2005) With the state our economy is in as of late, I imagine that number to be much higher now.

Among individuals who are disabled between the ages of 25-64, 27.1 percent were in poverty, compared to 9.1 percent for people who had no disability. Of this same group, 57 percent of those who reported having a severe disability were receiving some form of public assistance through government programs such as food stamps or public housing where only 7.3 percent of non-disabled individuals required such assistance. (Americans with Disabilities, 2005) So before we go slashing public assistance, let’s think about the actual people it would be affecting. 

Too often the head honchos look at the bottom line and ignore the human beings that make up that line.

Shooting at LAX - How YOU could have prevented it

KILLING AT THE AIRPORT

In case some of you haven’t heard, there was a shooting at LAX, a major airport in California, USA.  Paul Ciancia walked into the airport and with a motorcycle helmet on started shooting an assault rifle, killing TSA officer Geraldo Hernandez and wounding two other officers. He was later shot by police and is currently hospitalized but unable to speak.

Now that you’ve gotten some background, I want to tell you that the point of this writing is not to report to you about yet another public shooting but to WAKE YOU UP! Yes, dear reader, I am talking to YOU! There were so many clues leading up to this particular tragedy that it leaves me with my mouth agape and fully enraged wondering why didn’t somebody DO SOMETHING? He sent rambling texts to several friends, people who knew him well, people who say they thought he was acting “weird” and out of his normal state. And it went on for an extended period of time. He became introverted, quiet and anti-social. He became suspicious of governmental agencies and developed an anger for, specifically, the TSA. He talked about something bad about to happen; at one point, he texted several different people at one in the morning with messages saying he had something very important to tell them and asking them to call him back as soon as possible; he asked all his roommates at different points to give him a ride to the airport so he can get back home to New Jersey but didn’t have a specific flight to get on. It goes on.

SOMEBOD(IES) DROPPED THE BALL

 So, I ask his roommates and friends: Why didn’t you ask him if something was wrong? Why didn’t you ask him if he needed help? Why didn’t you ask him to dinner, to drinks, to a game, something, anything, to feel him out?? And if some of you did, and he denied there being a problem, why didn’t you try harder? All of them are now saying, “I never thought he could do something like this.” Really? Well, guess what? He could and he did. Just before the shooting, his family in New Jersey called the police in their area to ask they contact the police in Los Angeles to do a welfare check after receiving a series of odd texts. They were concerned that he was getting ready to hurt himself. Unfortunately, the police arrived about 45 minutes too late. A roommate had already driven him to LAX and the shooting had already commenced.

Now two families are suffering tragic losses. The family of the shooter is suffering with shock and disbelief and grief. They will undoubtedly be judged for their son’s actions for a time to come. Officer Hernandez’s family is suffering greatly as well. His unnecessary and untimely death will impact every family member for the rest of their lives. His is the first death in the line of fire of a TSA officer since its inception in 2001.

STOP THE KILLINGS

Now I want you to THINK. Think about the people in your lives. Your friends, your sisters, brothers, uncles, cousins, your co-workers, your Facebook contacts. Is anybody standing out in your mind because they’ve changed? Has anyone stopped interacting as much as they used to online or stopped showing up at social outings they were always a part of? Does anyone who used to be talkative now barely speak? Has someone become withdrawn, seem sad or mad all the time or talk about odd topics you’ve never heard them talk about before?

Invite them to lunch. Stop by their home with bagels and a box of joe. Ask their immediate family members or other loved ones if they’ve noticed the same thing. Follow your instincts – if your gut is telling you something is off, then it IS. Don’t wait for somebody else to do something. BE THAT SOMEBODY. You could save a life! After the LAX shooting – and countless others in very recent history – that is an unfortunate understatement.

BE THAT SOMEBODY

Morning Fantasy - A Mother's Dream Come True

I was cleaning out my garage and found a journal with exactly one entry in it dated June 29, 2004. It hit me like a ton of bricks because while I haven’t thought about this particular fantasy in a while, it still has a very strong hold on my heart. Here’s a piece of it:

You are sleeping now. I love watching you sleep because you are so peaceful. Your arms are not flailing nor are your legs kicking. You aren’t arching your back or twisting your head side-to-side or thrusting your tongue. Your hands are soft and only slightly curled as they should be, not fisted into a sweaty ball. The only thing that moves is your skinny belly as you inhale then exhale so perfectly. So perfectly.

I had a flash, a split second, when I knew you were okay and the next morning you were gonna come running into my room with sleepies in your eyes. You would stand right next to my face, barely seeing over the top of the mattress with your tiny-people legs and your string-bean body. Your hair would be all mussed and your pajama bottoms waist band would be half-tucked inside out. You would put your face right next to mine and whisper to me, “Mommy, are you up?” I would feel your sweet breath roll over my cheeks and with eyes closed I would whisper back, “Not yet.” So you’d climb in, as quietly as a hurricane and whisper, “Move over bacon.” I would and you would cuddle up to me. After waiting patiently for 43 seconds you would half-whisper, half speak, “I’m hungry.” So we’d get up, walk to the kitchen side-by-side, your soft tiny hand holding mine, and you’d pull up a chair to the counter and show me how to make pancakes.

But of course that didn’t happen because that flash wasn’t reality. It  left just as quickly as it came and when it was gone I mourned for you. You are alive and I’m so grateful for you but I mourn for you. For my angel face, the most beautiful girl in the whole wide world. And nobody can help me. Nobody understands why I feel this way but I do. I would give anything and everything up for you to be well and happy.

Nine years later, I still have moments where I mourn for the coulda’s, woulda’s, shoulda’s. But much of my thinking has changed. I have often (and still do, at times) felt that I’m living on the same planet as the rest of the human race but that I live in a different world. Thanks largely to the internet, I know that there are others like me, who do understand why I feel the way that I do. Wishing for things to be different but having somewhat of a fear of getting what I think I'm wishing for. There is often a battle going on in my head between living life the way it is and wondering how it would be if it were different.

Although I don't know what my daughter's thoughts and dreams are, what is most important is that is well and she is happy. That is the greatest blessing of all.

Don't Hate The Cure, Hate the Haters!

I am so sick of people who look for "cures" or better treatments or a change in their medical treatment being looked at as vile creatures that should be relegated to the depths of all of Dante's realms for eternity.

People with disabilities are already stigmatized and often cut off from general society because of antiquated assumptions and prejudiced thought. Why must people with disabilities have to endure hateful accusations from people within their own communities???

For those of you who may be unfamiliar with my family here’s a tiny recap. My daughter is now 15 years old. She has cerebral palsy which affects all four limbs that was caused by an injury at birth aka doctor’s error. She is non-verbal, non-ambulatory and needs full assistance in every aspect of life. She is a beautiful, intelligent, loving, funny girl who is disabled. I had her when I was barely 20 years old and raised her on my own. It was hard. I mean, really tough. Forget the psychological price a parent pays, the physical bill is enough to make some people dine and ditch! I can’t imagine myself without my angel face but I would be lying if I said there weren’t days where I felt like I just couldn’t do it anymore.

I would also be lying if I said I don’t still wish there was a cure or miracle waiting out there for us. If I came across some medical procedure, medication, doctor, wand, fairy dust or crystal ball that would take the CP right out of her without the risk of death or something like that, I wouldn’t even take a second breath before I screamed out, “HELL YES!!” Why do other parents – especially those of children with autism I have come to discover – judge me, and others like me, for that? Why do people in the disability community insist on further alienating individuals in their community who WANT a change? One paraplegic may be fine with never walking again while another searches for the scientific breakthrough that can give her her mobility back again. Is the former a “better person” than the latter because she’s “come to terms” with her disability, “accepted what’s been dealt”? Is the latter “better” because she’s a “fighter” and “isn’t giving up”? Why does one have to be better than the other? Each one of you reading this makes decisions for your own life that you feel is in your best interest. Each one of you reading this makes decisions for your own life that you feel is in your best interest. I’m 100% sure that none of you like it when someone offers their thoughts on which direction you should go in, especially when you don’t even ask!

Those parents who say things like, “I would never cure my child because then they wouldn’t be who they are”. Really? Every circumstance in everyone’s life makes us who we are. The family I was born into, the way my parents spoke to me, the school I went to as a kid, the friends I made in high school, the jobs I held in my 20’s…all those things make me into who I am. And I’m still evolving. Who I am in 5 years will be different than who I am at this very instant. So yes, if a child is cured or healed of their illness/disease/disability, they WILL be a different child. Anything that happens TO him, FOR him, WITH him, BY him will change him, for better or worse, whether he has a disability or not. 

How can anyone automatically assume that they know beyond a shadow of a doubt what their kids’ desires are when that kid can’t vocalize them? And who are you to judge me and others like me for wanting our kids to be able to have a different life? Do these people not think that if my daughter was given the choice, she would choose to WALK? Do they not think that she would love to TALK, to HAVE FRIENDS, SLEEPOVERS and GIGGLE FESTS? Do they not think that she would choose to have an easier road so that putting on a shirt is not a struggle; so that eating is a matter of preference rather than a chore of organizing her lips, tongue and cheeks in a manner that would allow her to bite, chew and swallow without spilling, coughing or choking??

Yes, if she were a “normal” kid in a “normal” school, she would be different. Maybe she would have an attitude – teenagers often do. Maybe she would be a bookworm. Maybe she would be a tomboy or a princess. Who the hells knows? I wish I did. Don’t villainize me for wanting the best for my child. Isn’t that what a parent is supposed to want?