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?

I Wanna Hold Your Hand

I’ve talked about some of my fantasies in “I’m Aware!”

My son helped me to realize one of them recently.

Such a silly little thing, to be able to walk alongside my child, holding hands but it’s the silly little things that make each day special. Today is a good day.

Facing Your Fears - Do Disabilities Scare You Away From Enjoying Family Outings?

When we were kids, my Uncle Victor and Aunt Lina used to take me and my cousins to K.I.S.S. park every summer. At that time, there were about 6 – 8 of us, cousins and siblings, all elementary-school age. K.I.S.S. is an anagram that my uncle made up but back then, I really thought the park’s name was Kiss – only years later did I find out that it wasn’t! The adventure would begin with a mysterious letter we would get in the mail (what kid doesn’t love pulling a letter out of the mailbox with their name on it?) It would be in the form of a puzzle or note of some kind with clues. We would put the puzzle pieces together or figure out the riddles and discover that we were about to embark on another great day at the park. I honestly can’t remember if there were any other adults there besides the hosting couple or how we all even got there! I just have these wonderful memories of hot summer days, dusty games of soccer & freeze tag, canoe rides, horseback rides and fun, fun, fun! The entire time I wrote this section, I did so with a big smile on my face!

Many years later, when I was in my early 20’s, there was a thought to revive this old tradition. Several of us were excited when Uncle Victor suggested we hit the ol’ park again. My daughter was a toddler and I was having a (very) difficult time with adjusting and accepting life as we knew it but I was filled with nostalgia and excitedly looked forward to K.I.S.S. with my family. By this time, I was in a very deep depression over my daughter’s state of health. She couldn’t sit on her own, let alone walk; she was non-verbal so there were no first words or “mommy”; she was having seizures that were progressively getting worse. When I was pregnant, as all moms-to-be do, I had these visions and fantasies of how life was going to be. Her first steps, first words, going to the playground together, shopping for school supplies, sleepovers, giggle-fests…Everything crashed and burned the day she was born. I found myself constantly running through flames, trying not catch fire as I stumbled through the burning building that became our lives. Every milestone missed, every specialist appointment, every “normal” kid who walked by us was another spark, a new fire threatening to engulf me. I can tell you that practically nobody in my life had even an inkling that I was feeling this way. I’ve always had a hard edge to me and I’m sure I came off as angry or bitchy. But I felt tremendously lonely and terrified and sad. These are still feelings that stick with me today, thankfully not to the same degree, and I know that the majority of parents who have children with disabilities know what I’m talking about. I was having a tough span of days filled with these icky feelings when I wrote “A Mom Missing Out On Her Milestones”.

It was difficult for me to enjoy the day at K.I.S.S. park even though I had hoped that it would be a great day. There they all were, those walkers & talkers, flitting about, eating burgers at the picnic table we couldn’t get a wheelchair under no matter how we angled it, playing kickball, just doing what normal people do at a park. Enjoying the sun kissed summer afternoon, their laughter floating in the peaceful breeze as puffy clouds gently slid across a sapphire sky. That’s how my eyes saw their joy. Soft. Velvety. Melodic.

All I could think about was the uneven ground that I had to fight with the wheels of her chair. There were tree roots and branches littered about, hilly sections, small ditches and other barriers that come naturally in a park. We were supposed to walk over to the canoe area – a walk that we always enjoyed in the past – but I kept thinking about the struggle I would have pushing the chair over the grassy areas to keep up with the rest of the group. Not to mention the uncomfortable bumpy ride for my daughter who was sitting in the chair! And what about the canoe ride itself? How were we going to safely transfer her into the canoe when she can’t help at all? She can’t sit without full assistance – how can we get her to actually stay in there? And if we do manage all that and make it back, how will we get her out of it now that we’re IN the water and the canoe is bobbing about?

These of course were only (some of) the PHYSICAL worries that consumed me. I haven’t mentioned the bigger meaning behind the physicality involved in bringing along a person like my daughter to a fun day at a park! Seeing everyone else dashing about care-free made our reality (mine & my daughter’s), our differences, actually palpable. These differences weren’t just a notion. No, they were real; unquestionable; cold and hard. The toll this takes on a person’s psyche is sometimes unbearable. There are some days where I have to work at keeping my joy.

She is now 15 and looking back I wish I had done so many things differently. Isn’t that how it always is; 20-20 vision tends to be perfect. Why did I allow myself to focus on the negative parts of the trip? Thinking back on it, the only memories I have from that day is a sad game of kickball (for me; everyone else was having a great time, as I should’ve been) and the canoe ride. (Which, by the way, wasn’t at all terrible. She was still little so transferring is not the game of logistics it is today. But even today, I have Nick Vujicic to remind me that pretty much anybody can get in and out of water!) Because of my own personal issues, I didn’t allow myself to enjoy what she could do. She was having a beautiful time with her cousins even though she couldn’t run around bases or get a turn throwing the boomerang and wasn’t that the point of the day?

I find myself still paralyzed with fear to this day. I want to do things or go places and decide that I will take her no matter what but then I chicken out at the last minute. I start thinking about the things that can go wrong – maybe there won’t be an accessible area for us to sit/stand; maybe there will be steps we can’t get up; maybe it will be too crowded and she won’t be able to see anything except strangers’ butts; maybe we won’t be able to find parking. The list goes on and on. And yes, those things can happen. On our first family vacation in 2012 we found ourselves blocked out of a building that housed the resort’s pizzeria, arcade and ice cream parlor because it had steps, even to the first floor!

But what if things like that don’t happen?? What if we go and there is a spot waiting for us to park in, the venue has curb cut-outs and ramps leading to it so we can get there and there’s a wheelchair-accessible area so she doesn’t have to miss out on seeing what everyone else is seeing? What about that?

There are some things that we just can’t do, for logistical and emotional (on my part) reasons. We can’t go to certain people’s homes because they're just not accessible. Taking the train into the city for a day of sight-seeing and shopping – not gonna happen. Spending a Sunday at the beach from dusk till dawn with coolers filled with bagels, cold cuts and bottled water – a thing of my past. But why should that stop us from creating wonderful, loving, fun-filled memories doing things that we can do? It shouldn’t –  and it won’t!

Did you have fears or sadness surrounding family outings like me? Do you still? What do you do to try to get past these feelings?

YOU Have Autism, Too!

What is autism?

If someone is shy & considered “socially awkward” – does that mean they have autism?
If someone is quiet & doesn’t speak much – do they have autism?

If someone is always tapping their finger or their head – is that a sign of autism?

“SCIENTIFIC” STUDY

Well, according to a new study by the CDC, I had autism when I was a kid which I have apparently grown out of. And 1 in 50 kids have it, at least, according Michael Rosanoff of advocacy group “Autism Speaks”. 1 in 50?? Really?? Look, is it possible that of every 50 kids, at least one of them is gonna have autism? Sure, I guess so. Anything’s possible. But how in the world can doing a telephone survey on parents be considered a responsible way of getting information that can dramatically impact families? That’s how this particular study was done. 95,000 parents in 2011 and 2012 were contacted by phone and asked certain questions about their children. According to the study, less than a quarter of the parents contacted were interested in doing the survey which says that parents not affected by autism were likely not the ones answering the survey. But here’s my concern: parents cannot be the only source of information gathering in regards to a child’s health.

TEAMWORK

Before you lose your mind, let me explain what I mean. I am a fierce advocate for my children’s health. I stay on top of what needs to be done and don’t necessarily agree with the doctor’s advice just because s/he is a doctor. We work as a team to do the best for my kids’ health issues. I do my research and read up on issues related to their medical needs. But I am no doctor. I must take into account what the medical professionals are telling me when making final decisions on how to move forward.  Isn't it possible that some parents who answered this survey have their facts wrong? Couldn't it be true that there are parents who believe their kids “have something”, even though their doctors have disagreed with them, because they like to tap their fingers on the floor while watching Sid the Science Kid or because they ignore their name being called, no matter how much they’re called? Then here comes this phone survey, asking questions about an unsubstantiated fear they have and BOOM! 1 in 50 kids have autism!

Couldn't it also be true that these “symptoms” of mild autism are just harmless habits? Maybe that socially awkward person IS just supremely shy. Maybe that kid with a speech delay prefers to listen rather than speak. We all know that there is no medical test, no genetic screening, which will confirm conclusively that a person has autism. In very severe cases, it’s quite obvious. But are we saying that every little quirk is something? Does everything a person do or think need to be diagnosed as some type of neurological deficiency or disability? I've told you before; I really hated science in middle school and didn't do so well in it. Should I have been diagnosed with a learning disability?

ENOUGH, ALREADY

Listen, I’m all for research but in my opinion, all this media coverage on every single iota of autism research has gotten way out of control. I receive several newsletters on disability issues daily and in every piece of mail there are several links to one autism article or another. A new study on rats; a new therapy that may cure it; smelling salts that will change thinking patterns; scientific “breakthroughs” that have no evidence or track record saturating the brains of families who are looking for cures or even just minimal help. 

Don’t you think that all this “information” is actually detrimental, rather than helpful, to families who are really interested in actual help?

Dancing Dreams – Ballet For Girls With Disabilities

I was on the internet one day, just poking around, and I came across this wonderful dance program for children with disabilities. Dancing Dreams was started in 2002 by Joann Ferrara, a pediatric physical therapist with a background in ballet. It has grown from five dancers to over 50 girls, ages 3 to 17. Based in Queens, NY, dancers come from all over NY state and even New Jersey to participate. Each ballerina has a helper – a high school student who is trained to assist a student in class. Every year, the ballerinas put on a performance for their family & friends which is free and open for all to come enjoy!

This lovely program has been featured on the Today Show, CBS Early Show & other news channels. It’s also appeared in The New York Times and other national publications such as People Magazine. “Ballerina Dreams”, a book about the program published in 2007, won accolades in the publishing field.  Principal Dancer of the New York City Ballet, Jenifer Ringer, fell in love with Dancing Dreams & its mission and is now its Artistic Consultant.

Currently, there are three programs Dancing Dreams runs. There is the Adaptive Dance Class, of course. They also do community outreach where they speak at schools, teaching children about awareness. The Teen Leadership program helps volunteers learn valuable leadership skills while turning dreams into reality for the ballerinas.

Dancing Dreams is a nonprofit organization so it relies on charitable contributions for funding. There is also a voluntary contribution for classes to cover the cost but no ballerina has ever been turned away due to an inability to pay. Donators can choose to purchase items for ballerinas, such as ballet slippers ($35) or a leotard and tights ($75). See a full list ofdonation suggestions here.

Check out their website at DancingDreams.org 

Reverse Inclusion

DAMMIT I'M PISSED NOW

I read this story about a special ed teacher (who is qualified by certifications & degrees, no doubt) who put together a club at her school, "Creating Exceptional Character" which is a "local chapter of the Council for Exceptional Children, a national organization devoted to special education. The club brought typical students into classrooms after school to work with students with special needs." You can read about it here.  She then created an elective course offered to the general education juniors & seniors that "would follow a goal related to the club, which is to introduce the history and interaction of individuals with disabilities."

The article called it a "reverse inclusion" class. I have severely mixed feelings about it. In fact, the more I think about it, the more it pisses me off! I would like to start off by saying that I am very, very sure this teacher had good intentions in creating this club & elective course. And maybe I'm being overly sensitive but a couple things really get me going.

First of all, the typical kids who take this elective course are referred to as "positive-peer role models". Excuse me, but why are the kids without disabilities the "positive role models"? Don't you think that those kids stand to learn a lot from the kids with disabilities? Why aren’t the kids in wheelchairs considered role models? I would say that my daughter models ultimate levels of patience, kindness and immeasurable love, for starters.

The teacher stated in the article, “I saw really good students not knowing how to interact with special-needs students, and it gave me an idea to design a course that would educate typical students." That's great. I really like the sound of that. Then she goes on to say, “You can’t imagine what it’s like to watch a football player who’s popular and has a girlfriend, to feed a Thanksgiving dinner to a student in a wheelchair.” WHAT?? So a POPULAR kid with a GIRLFRIEND feeding a kid in a wheelchair at dinner....THAT'S the standard of successful inclusion??? WTF!!!

Why do people automatically assume that people with disabilities should be pitied and have people around them saying things like, "awww...look he's so cuuuute!" when he's trying to tell a joke or flag a taxi or just wanting to socialize...you know, things that everybody else on the planet does!

We need to look at people with disabilities with the SAME EYES we look at people without disabilities. If you wouldn't say, "awww" to a man in his 30 who is not disabled, why would you do that to someone who is? That's called INFANTILIZATION. Yes, it's actually a real word and a real occurrence. And it's also really annoying.

When I went to the Down Syndrome conference a few weeks ago, one of the self-advocates there was a young man who is 21 years old and he gave a power-point presentation entitled, "Why We Are More Alike Than Different", comparing people with Down Syndrome to those without. I was sitting at a table with a bunch of college girls and all they kept saying, Every. Single. Time. this man said anything was, "awwwww! he's so cuute!!" and they all looked at each other, with their shoulders raised, eyebrows up, corners of their mouths turned down...you know, that dumb "aw shucks" look girls get sometimes. I wanted to slap them every time. But I didn't want to get fired that day so I held off on that. I mean, he was making sense, putting forth a very reasonable and logical argument: he IS more alike than different! But I have this nagging feeling that they didn't hear what he was saying. They were just thinking how "cute this boy is, standing up there, in his cute shirt and tie...oh and look! He managed to tie BOTH his shoes!" AWWWWWW!!!

So back to the “reverse inclusion” idea…I know some of you out there will wonder, “What’s the big deal?” Well, here it is: why is it, that when a program, social activity, fun gathering, whatever, is organized for people with disabilities, it seems like it’s a great big pity party? I mean, doesn’t my daughter DESERVE to have fun stuff to do – not because she’s disabled but because she’s a great kid! Take the Girl Scouts, for example. Is it an organization that gets girls together to “give those poor girls something to do”. No! They teach them things; the girls get to make friends, have fun; they impact others around them because of their different strengths & abilities. There’s a purpose behind it. Something bigger than getting the crippled kids in a big room and getting the cool kids to smile at them and feed them mashed potatoes.

Anyways....this program, the "reverse inclusion" one, at the end of the day, although it started out with a good intent, is a piss-poor example of how inclusion SHOULD be done.

Damn, we got so much work to do!!! 

Another not-so-great doctor visit

Sigh..

In January of 2012 I sat in the ER room, waiting for the doctor to come in to see my son, again, and tell me why his oxygen level was low enough that he needed an oxygen mask to breathe. I held my baby as he slept, looking down at his sweet 3 month old face and wondered what could be the possible cause. The tears wouldn’t stop and the ones I didn’t catch in time dropped on his hospital gown. The quiet tears turned to very deep sobs. I prayed to God that it wasn’t something permanent. “Please, God, PLEASE, whatever it is, don’t let it be something permanent!” I BEGGED. Just sitting there, rocking him, begging out loud, praying and sobbing, that whatever was causing the repeated ER visits and now the oxygen mask would be just a blip in his timeline.

But it wasn’t. First we discovered he had PCP which is a very serious pneumonia, very rarely seen in babies, more often seen in patients with compromised immune systems caused by HIV. But why did a little cold progress into such a serious illness? After a series of blood tests, X-rays, MRI’s, scopes and biopsies, Bruton’s was the reason. And it is very permanent.

Yesterday we go for a regular follow-up at the immunologist’s office and I leave there with the doctors concerned that he has a speech delay. He is 16 months old and does not say  even one word. He makes “mama” and “dada” sounds but they are not directed at us. He doesn’t call us by our names. And he should be. I have a call in to early intervention for a speech evaluation but I am praying that it is nothing permanent. Again. I pray that it is just because his older sister is non-verbal so he is mimicking the only other kid that he’s really around right now and his words will soon be exploding from his mouth. 

There are so many layers to this traumatic doctor’s visit. Going through yet another thing with my son; having two kids with special needs; looking forward to the Italy I missed out on with my first kid and landing in Holland again. I can’t even form coherent phrases to everything in my brain right now.

Please, please, please don’t let this be permanent.

I want to hear “mommy” from one of my babies.

Is inclusion a good thing?

INSERTION VS. INCLUSION

           Inclusion is a murky word. Proponents of inclusion want to have classrooms, social activities and workplaces where there are disabled and non-disabled individuals getting together, commiserating, cooperating…It scares the crap out of me. Why? Because too many people believe that insertion = inclusion and frankly my friends, it does not.

Let us ask ourselves: have the disabled been integrated into society since the “purging” of the state hospitals (deinstitutionalization) began in the 1970’s? By definition, inclusion is “the addition of somebody or something to a group or mixture” (Encarta dictionary). However, inclusion can be nothing more than a simple insertion of an individual into a setting where they are not truly accepted but are merely tolerated. A person can be tolerated without being recognized. Think of that kid that sits alone at the lunch table, not being picked on but not being played with, either. Tolerated but not recognized.

They can be admitted without being incorporated. A student with Down syndrome has a right to be integrated into a non-specialized public school but doesn’t his lack of friends or any after-school programs geared towards his socialization needs and interests prove that inclusion does not equal acceptance? In this case, we are not just talking about his acceptance by his peers; the teachers, administrators, coaches, mentors and the school system as a whole is in question.

Now, “federal officials are telling school districts thatthey must offer students with disabilities equal access to school sports.” Schools will be required to make reasonable accommodations to include students with disabilities. If doing so changes the nature of the game drastically then new programs that have “comparable standing as mainstream programs” must be created.

FORCED INSERTION

This worries me some. There are some unintended consequences I can foresee here. Forcing teachers and coaches to make a spot for a kid with a disability in their “normal” routine they’ve been accustomed to can be traumatic for all involved: the teacher/coach, their current students, and the kid being inserted into the team.

Once, when I was working as a hair designer in my previous life, before inclusion went from being a notion to an action that is actively pursued, a client who was a middle school teacher was venting to her colorist how she was being forced to have special needs kids in her classroom. She commented on how difficult it made her life now that she had to develop a lesson plan for a kid “like that” and still have to be able to teach the “normal” kids. The venting went on for a while and I eavesdropped the whole time. This clearly shows that inclusion must be done in a thoughtful, meaningful way. We can’t just tell a school, “You have four kids with physical disabilities and none of them are on sports teams. Stick them in somewhere by next week.” Can you imagine the resentment towards those four kids felt by the coaches and the other students because of a forced insertion? How will that resentment play out? Ignoring them? Dirty looks? Hurtful words? Physical harm? I know that not all teachers, coaches & students will feel this way but is this a risk you’re willing to take with your kid? Not I! And yes, I know, nobody is saying that schools will have a week’s time to make the necessary changes. In fact, there’s no deadline for schools to comply which seems like a built-in loophole to me. But there is ALWAYS resistance when institutions that have not complied with ADA regulations for the entire time they’ve been in existence is told that they must make changes. Just take a look at the whole pool-lift debacle.

Another very real concern I foresee is: how can instructors & teachers who have never had any experience with special needs students be expected to include these students without any formal training?? Not everybody can be a special needs instructor. Just because someone is “good with kids” and gets good results in their classroom or on the field does not automatically ensure that they will know what to do when they’re presented with a whole new set of….problems, shall we say? A kid with autism who self-stims, for example, can be hard to deal with when you’re used to things like Tommy taking Sandy’s pencil. Forcing a teacher to take on special needs kids because of an “inclusion doctrine” with little or no training is detrimental to the students and teacher. I have not read anything, anywhere, which talks about appropriate training for these instructors who now have to figure out ways to truly include new athletes.

And of course we will have those ridiculous comments about how enforcing these regulations will only serve to raise taxes and school districts will become even tighter with their budgets. Oh, and now, regular programs will suffer because they will have to be cut in order to funnel cash to creating new programs for those other kids. Do you know what Title IX is? It made huge positive changes for women in sports. It demanded equal sports programs for women as for men and it led to a large increase of female participation in sports. But of course, there were those idiots who found a way to make it a negative by saying men’s sports had to be cut because of Title IX. AND??? Does that mean that women shouldn’t have the same opportunities because now the men have slightly less? Why should it be any different for people who have disabilities?

MAKING CHANGES

I started off by saying that inclusion scares the crap out of me but I do believe it is necessary and vital to a healthy society, not only for those who are disabled but also for the walkers, talkers & others who are not disabled. Access to school athletics, whether at the elementary, high school or collegiate level is A RIGHT, not a privilege! Too many times people with disabilities are seen as pity-cases. But guess what, people? There are actually people with disabilities who can do things society believes they cannot. Have you heard of Mitch Ryan? Yeah.

 So what is the answer? How can we stamp out stigmas and eradicate discrimination? We can protest and march against the unfair and unequal treatment of those with disabilities. However, to date, research suggests that protests do not promote positive attitudes or increase knowledge about disabilities (Westerholm, et al., 1506).

Education is the main conduit to a better understanding of the life of a person who happens to have a disability. The sharing of correct information will assist in the reduction of stigmas attached to individuals who are physically, mentally and developmentally disabled. In the case of mental illness, for example, after-care information is of particular importance because studies have shown that people who only receive information regarding psychological symptoms increased their negative attitudes about the illness (Westerholm, et al., 1506).

There needs to be an attitudinal shift when considering disability rights. Rather than charity it is imperative there be a focus on civil rights; rather than pity, a belief in a wide range of human possibilities is crucial. A disastrous consequence to the stigmatization of the disabled population is the tendency for the disabled to avoid contact with the able-bodied and, conversely, the able-bodied to ostracize the disabled. I have a firm belief that the best approach to reducing stigmatization and discrimination is to increase meaningful personal contact between folks who have disabilities and those who do not, i.e. full inclusion with appropriate training, not just insertion. For the disabled, this dynamic can help foster a sense of trust towards the non-disabled which may increase their willingness to involve themselves with social interactions they may have previously been resistant to. The development of this dynamic can provide for those who are not disabled important information regarding the positive and negative impacts of mainstream society on those who live with disabilities.

Imagine a world where people with disabilities aren’t fearful of the non-disabled and the non-disabled are not uncomfortable around people who are disabled. That’s the world that I want to live in.

THINK ABOUT THIS

Reverend Martin Luther King, Jr. was an American dedicated to the realization of the equal rights promised to all African-Americans in this country. In his famous speech he described the state of being of African-Americans a century after they were to have been emancipated:

“One hundred years later, the Negro lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the Negro is still languished in the corners of American society and finds himself an exile in his own land.”

What he proclaimed was a concept that should have been obvious without being stated – that every person has the right to be treated equally and fairly.   We can see very strong similarities between the tragedies that the African-Americans and the disabled citizens of this country have been forced to endure. Must we wait one hundred years after the beginning of deinstitutionalization before the civil rights of the disabled are truly recognized?

Citation:

Westerholm, Robert, Laura Radak, Christopher Keys, and David Henry. "Stigma." Encyclopedia

        of Disability. 4. Thousand Oaks, CA: Sage Publications, 2006. Print.

Edited for broken link

Accessibilty Arcade

An accessible arcade – Accessibilty Arcade – is open for all gamers in the Martin Luther King Jr. Memorial Library in D.C. The idea of one had been showcased in the past but it’s a permanent fixture developed by The Ablegamers Foundation that can be enjoyed by visitors. 

Why is this so important? 

Glad you asked! 

First, it’s important to individuals with limitations (and their families) to be able to enjoy the same type of good stuff that you & I take for granted. Me? Not much of a gamer. But I have the option to not be one. With this type of technology, thousands of people (if not more) now have the option to not be a gamer, like me.  =D

Another reason this is great stuff is because beyond the fun of playing there’s the therapeutic aspect. Hand-eye coordination is something that has often been touted by defenders of gaming when non-gamers commented on the time wasted in front of the screen (I would never). And it’s true. Gaming offers a fun way to improve cognitive ability as well as fine, and sometimes gross, motor skills, depending on the type of game.

So play on, playas! 

Check out some images in this article: Life Labs Attends Launch of Ablegamers Accessibility Arcade 

UPDATE:
UCP’s Life Labs has recently won a CVS Community Grant that will help to build a prototype mobile accessible gaming station in partnership with the AbleGamers Foundation. Read more about it here.

What A Learning Disorder Is

WHAT’S A LEARNING DISORDER?

Today, boys & girls, I want to discuss what a learning disorder (LD) is.

If your kid doesn’t do well in school; if he can’t focus on a task; if he is always tapping his fingers or pencil; if he continually talks to other students in class during work time; if he never seems to be able to complete his homework; if he fails pretty much every test he takes, he may not be a Bad Kid. He may actually have a learning disorder.

LD is an umbrella term that can encompass many types of learning problems. It has NOTHING to do with INTELLIGENCE or MOTIVATION. In other words, if your child has a true LD there is no amount of punishment that will motivate him to “do better”. Taking away all his video games and all extra curricular activities just for the sake of punishment will not help. 

An LD is not just about reading or numbers. It can also cause problems with reasoning and speaking. Your son could be looking right at you when you’re explaining something to him but he can’t grasp what you’re saying. Not because he isn’t paying attention but because his brain is different from yours. A kid with an LD might love to read but can’t do simple math. He might grasp the entire periodic table and know how each element interacts with the other but cannot understand what you mean when you say, “You need to finish up before dinner time.”

WHAT A LEARNING DISORDER IS NOT

I can remember times in elementary school where I just couldn’t get what I was being taught. 5^th grade science was the worst. I just didn’t enjoy it and couldn’t be bothered to study it so needless to say, I didn’t score so well on the exams. But it wasn’t because I had a processing disorder or an LD. I just really hated science. A learning disorder is totally different. A kid with an LD isn’t dumb or lazy. They are wired differently which means they don’t take in information the same way as kids without an LD. You can’t be expected to follow a recipe if it’s written in Swahili (and you only know English) so how can you expect for your child with an LD to learn how to add or spell or to tell the difference between stratus clouds and cirrus clouds if you’re trying to teach him the same way kids without LD’s are taught?

YOU GIVE IT A TRY

Let’s try a little experiment, shall we? Think of something you enjoy. It can be anything.  Are you great at cooking? Math? Gardening? Super. Now go to a foreign country and sign up for a class in their language and see how well you do.  My guess is, not that great. How do you think it would be, to sit in a classroom with someone speaking at you in a foreign language & where everyone else in the class is getting it? Would you be anxious, trying to pick up on what they’re doing, what page they’re on, what they’re writing and reading? Would you be bored, not being able to understand the words that are coming out of the instructor’s mouth, so you start daydreaming or gazing out the window? Would you be irritated, trying to figure out what the hell is going on, your fellow students getting obviously annoyed that you keep looking over their shoulders or asking questions?

And that’s in a class that’s on a topic that you ENJOY.

Imagine how it might be for a kid who deals with these emotions on a daily basis, in a place they have come to hate and feel uncomfortable in because it’s all a foreign language; a place where they have become hated because they don’t follow along easily or are disruptive in a class that teaches them nothing.

HOW CAN YOU TELL IF IT’S A LEARNING DISORDER?

OK, so you’re not sure if your kid has a learning disorder. Here are some signs at different ages that may clear it up for you: (the following chart was found at Helpguide.org) 

Preschool signs and symptoms of learning disabilities

§  Problems pronouncing words

§  Trouble finding the right word

§  Difficulty rhyming

§  Trouble learning the alphabet, numbers, colors, shapes, days of the week

§  Difficulty following directions or learning routines

§  Difficulty controlling crayons, pencils, and scissors or coloring within the lines

§  Trouble with buttons, zippers, snaps, learning to tie shoes

Grades K-4 signs and symptoms of learning disabilities

§  Trouble learning the connection between letters and sounds

§  Unable to blend sounds to make words

§  Confuses basic words when reading

§  Consistently misspells words and makes frequent reading errors

§  Trouble learning basic math concepts

§  Difficulty telling time and remembering sequences

§  Slow to learn new skills

Grades 5-8 signs and symptoms of learning disabilities

§  Difficulty with reading comprehension or math skills

§  Trouble with open-ended test questions and word problems

§  Dislikes reading and writing; avoids reading aloud

§  Spells the same word differently in a single document

§  Poor organizational skills (bedroom, homework, desk is messy and disorganized)

§  Trouble following classroom discussions and expressing thoughts aloud

§  Poor handwriting

GET HELP

If you think your kid has a learning disorder, please get help for him NOW. It’s important to note that people with LD’s are usually just as smart as anyone without an LD. Don’t let your personal feelings on what it will mean to YOU if your son or daughter is diagnosed with a learning disorder. Denying that there is a greater issue (like a disability) at hand because you're afraid of how you will look to other people is selfish and wrong. Give your kid a chance to learn and to grow!

Life and Death - Deciding Whether Or Not To Terminate A Pregnancy

TIPTOES

I am no movie critic but I want to talk about a movie I fell into last night and ended up really enjoying.

It was called “Tiptoes”. This story follows a man and his girlfriend who are living together and very much in love. They talk about a future together, having children and are planning on getting married in the near future. Then she ends up getting pregnant and he starts to change. She doesn’t understand why since they had spoken about having a family and is confused by his ambivalence & distance. When he goes away for a training session she discovers why.

Although he is tall, his family is one of dwarves. He did not get the recessive gene but his twin did, and so did every other family member we meet of his. This is a tiny detail he neglected to tell his lover and when he is asked why, he didn’t really have an answer other than, “it never came up”, or something along those lines.

Of course the girlfriend was shocked. Her new relative brings her to his family, who all try to comfort her through her uncomfortable feelings and worries. She educates herself on the possibilities for her unborn child and decides to go ahead with the pregnancy. Her boyfriend is not so sure. He wrestles with his demons. He knows what it’s like for a dwarf; all the medical issues each individual can develop, how common it is that infants are in intense pain, the social aspects of being different.

IT’S A SMALL WORLD

What stood out to me was the reactions of each character as they realized they were about to enter a whole new world, a whole new level of existence with this baby. The girlfriend was initially shocked upon meeting her boyfriend’s twin – not only had she never heard of him but he was a little person! She was upset that he hadn’t told her he had a family of “midgets”. Part of their interaction is him correcting her. “If you keep using the word midget you’re gonna piss off a whole lotta people” is what he told her. She eventually did the right thing.

She also addressed her feelings of embarrassment that she would question whether or not to bring this baby into the world based on the fact that it may be a dwarf. She was sitting at a table with this family who had fed her, talked to her, comforted her and she was trying to decide whether she should terminate a pregnancy because it may be like them.

This is something that goes through the minds of parents-to-be if they discover that there is a genetic issue with their unborn: Intense fear over the difficulties that may lie ahead for them and for the baby and guilt over feeling this way. I know many of you reading this have had to make such a decision. And everyone has heard of a new story somewhere where parents had to make decisions and then were judged on their decision.

MY DECISION

When we were pregnant with my son, the 20-week sonogram showed an abnormality in his brain ventricles. They were larger than normal and on top of that, they were not even so one was larger than the other. I remember being hit with the same sensation one gets when they do a full belly-flop into the pool. My ears were ringing and I thought I would vomit through all the sobs. All I could think was “WHYYYYYYYYYYYYYYYYYYYYYYYY!!!!!!!!!!!!!!” My husband is much calmer, at least on the outside. He refused to believe anything was wrong until they were definite because through the several sonograms and prenatal MRI, all the specialists saw something, felt it probably wasn’t anything to worry about, but couldn’t be definite.

Amongst all this, we went for genetic counseling. We were given information and then sent home to think about things. In the car ride home I could barely keep myself together. I kept thinking about how we were so happy to be pregnant. I thought about all the “firsts” I didn’t get with my daughter because of her disabilities and how I would get to have them now (those of you who have children who are disabled know about this). I thought about this adorable baby, bundled up in my arms in the hospital bed, not in the NICU with tubes coming out of every limb, including the head. Then I thought about all that happening again. All the specialists, doctor visits, therapy, equipment. 

My daughter was injured at birth and lives with cerebral palsy because of doctors' errors. I did NOT want that. I barely survived the first time around. The fact that I still walk this earth is a miracle. How could I possibly be expected to do it twice?? I knew that I couldn’t and I felt so guilty and like such an evil person for wishing I never had gotten pregnant in the first place. I couldn’t say it out loud at that moment but I knew I would probably terminate the pregnancy. I was counting in my head how many weeks I had left to decide. Then I would start bawling again at the thought of doing that with a child I so wanted just days ago. I was torn.

We ended up having the baby. And my son has been fulfilling his job of giving me all my firsts   =D

He DOES have a genetic mutation which has zapped half his immune system. My world is now doubled with specialists and doctor visits. It’s not how I imagined it would be, though. It’s not like my worst-case-scenario & it’s not my dream-come-true. I guess this time, instead of going to Holland I made it to Sicily; almost Italy but not quite. And that’s okay. I have discovered that Holland is quite beautiful and that Sicily is just more of that beauty.

Hurricane Sandy

I feel like I have been living in a post-apocalyptic world since being hit by Hurricane Sandy. We had no power, no heat, no hot water. We moved as much stuff from the fridge into coolers with ice to the garage & I cooked on the grill plate attached to my BBQ in the garage! That was pretty interesting - only being able to cook one thing at a time. I usually have a couple pots going at once. Then to do it with a flashlight because it gets dark pretty early and we can’t exactly have dinner at 4:30! I joked with the girl that I felt like we were camping. That’s a pretend game she often wants to play and she has asked to go camping many times. We have never gone and I never intended on going because I don’t find any appeal to sleeping on dirt, being crawled over by bugs. This experience has only strengthened my “NO WAY, JOSE” attitude toward “roughing it”.

And keeping occupied a kid with CP who can’t do anything for herself is unbelievably difficult. Think about it; you can pick up a book and read if you want, or play solitaire or even a board game with someone else, take a nap…but with the girl, I have to not only be HER body but my body as well. And a 14 year old (with delays) is not easily distracted, especially when she is trying to tell me what it is she wants and 1) I can’t figure it out because her communication device is dead and the game of 20 questions isn’t getting us anywhere or 2) she wants to do something on the computer or T.V. that requires power/internet and she doesn’t understand the concept of no power = no T.V./internet.

I knew I would be excited when the lights came back on but she was ecstatic! It was funny because she had already gone to bed about 15 minutes prior to the power coming back on. But as soon as she heard the “beep beep” from some of the electronics catching internet (that sounds like a new virus) and the voices from my T.V. set, she started to laugh and holler. She INSISTED I turn on her television so she can catch up on some of her shows! She was truly a happy kid.

P.S. – There are so many people still suffering through the after-effects of Sandy. The people living on Fire Island and other shore communities have lost so much. I haven’t seen the pictures but on the radio, the reporters were saying that each individual house looked like an island – all you could see were rooftops surrounded by water. This post reflects my joy at returning to normal without any major catastrophes save for some lost condiments that we couldn’t fit in the coolers but I don’t want to diminish the trauma being experienced by thousands. I do pray that those affected will find comfort and can return to their normal as quickly as possible, in Jesus name.

Kids With Disabilities Being Housed In Nursing Homes

Hey, have you heard about what’s happening in Florida? 

What those brainiacs have decided to do is stick children with disabilities – some who are still infants – into institutions and nursing homes even though the level of care they need could be met in their own homes! I know it sounds outlandish – “Those types of things just don’t happen anymore!” – but it’s the God to honest truth! Instead of making the services these kids and their parents need available in such a way that would allow them to stay within their community, the highly paid, smarter-than-us-regular-folk, criminals-in-charge decided that they would rather use those funds to pay an institution like a NURSING HOME FOR THE ELDERLY to “care” for babies and children!

THE INVESTIGATION

A team of investigators  from the Justice Department visited six large nursing homes in the Sunshine State and found over 200 children with disabilities living in them. In many of these places, the kids are corralled into small, designated areas – these places are, after all, built to house the elderly, not children, so I’m guessing there aren’t too many areas in a nursing home that would be suitable or safe for a kid. And by the way, I use the term “house” spitefully; I do not think the majority of the habitants of these institutions need to be in places like these – repositories to contain the old, sick and frail that will bring a stream of money to the states they are located in. The average time these kids spent in a nursing home or other institutional setting was 3 years but they did come across some cases where the kids were there for over a decade.

These investigators spoke with many of these families and discovered that the parents WANTED their children home but couldn’t keep them there because Florida was not willing to make resources available to them, instead choosing to give those resources to the nursing homes. In some cases, these children are living hundreds of miles away from home which mean little, if any, contact with mommies, daddies, brothers, sister, aunts, uncles, etc.

Part of the purpose of the Americans with Disabilities Act (ADA) is to protect people with disabilities from being placed in environments they don’t deserve to be in just because it’s easier for the forces that be. It states that all patients and students must be placed in the least restrictive environment appropriate for that individual. U.S. Assistant Attorney General Thomas Perez has noted that Florida is NOT in compliance with the ADA. So the Florida Agency for Health Care Administration (AHCA) has got to be missing the mark because I sincerely doubt the Assistant AG would get involved unless there was some merit to the accusation brought forth by the investigation done by the Justice Department. There was also a Supreme Court decision in 1999 (Olmstead v L.C.) that prohibits forcing a person to be institutionalized in order to receive services they need when they can actually be getting those services in a less restrictive environment like, gee, I don’t know, their OWN HOME! 

WHY IS THIS HAPPENING?

As always, it’s all about the benjamins, baby. According to information dug up by the investigation “facilities often receive over $500 a day to care for kids, more than double the rate for elderly residents.”  An official from the AHCA, Elizabeth Dudek, was quoted as saying, “The agency will never interfere with a family’s choice for the location of their child’s care.” Hmmmm, the Justice Department doesn’t seem to agree, Ms. Dudek. In fact, it issued a Findings Letter just this month concluding that Florida is indeed violating the ADA and unlawfullyinstitutionalizing children! Here’s exactly what the letter states:

The United States issued a Findings Letter in September 2012 concluding that Florida is violating the ADA's integration mandate in its provision of services and supports to children with medically complex and medically fragile conditions. After a comprehensive investigation, the Department found that the State of Florida plans, structures, and administers a system of care that has led to the unnecessary institutionalization of children in nursing facilities and places children currently residing in the community at risk of unnecessary institutionalization. Florida has implemented policies and procedures that limit access to medically necessary services and supports that would enable children to transition home to community-based settings. The Department recommended that the State implement certain remedial measures, including the development of sufficient supports to enable children with disabilities unnecessarily segregated, or at risk of unnecessary segregation, in nursing facilities to receive services and supports in integrated settings in the community.

SAD VISIONS

I keep getting this mental picture of my daughter sitting in a home somewhere, alone because she can’t get up and go play with other kids and there’s not enough nurses or nurse’s aides around to give her some attention. She would have her beautiful long brown hair chopped off because it’s easier to wash and brush this way (yes, they DO do this), her wheelchair would not be fitted for her bony butt and her involuntary movements and she’d probably be all lopsided in it with worn out belts (I have seen some students in her school who live in group homes with chairs like these); they wouldn’t know that Entenmann’s chocolate chip muffins are her absolute favorite thing in the world and her teeth would probably be rotting out by now because it’s not easy to brush her teeth. But what gets to me the most is, she would be sad and lonely. Spending your days stuck in a chair pushed up against a wall somewhere is no way to live. Being two years old and confined to a room because the rest of the building is not safe is no way to live. Being a baby stuck in a crib with nobody to love you or hold you because there just isn’t enough time in the day is no way to live. And having a hospital as your “home” is definitely no way to live.

TOO BAD THERE’S NOTHING WE CAN DO TO CHANGE IT…OR IS THERE?

Florida needs to be woken up and made aware that they are being watched. It’s a sad fact that some people will only choose to do the right thing when they know they’re being watched but if that’s what it’s gonna take then I want to get as many eyeballs on them as possible!

Would you like to do something to let them know we’re watching that will only take 2 minutes out of your day? Go to http://ahca.myflorida.com/ On the left side of the page, you will see a picture of Elizabeth Dudek, Secretary, and right below her name is a link to email her. Send her an email stating that you read how her agency is institutionalizing children rather than placing them in their own homes. This not only violates the ADA and its least restrictive clause but it is morally and ethically wrong to force families to separate because the AHCA would rather pay a nursing home than provide in-home services. Tell her you are against this practice and want her to feel shameful for treating human beings this way. Cut & paste this if you wish; it will make the task even quicker for you!

Don’t wonder why somebody doesn't DO something to change something; 

BE THAT SOMEBODY!

Accessible Playground For People With Disabilities

I forgot all about this park until I just came across an article about it. Thanks, Arc Circle of Family and Friends!

It’s called Morgan’sWonderland, located in Texas, and it’s designed for kids and people with disabilities to enjoy. It’s a place where special needs kids and able-bodied siblings can have fun together. Families can have meaningful quality time that everybody can enjoy.  It has some great features and it’s very inexpensive. Anybody in the disabled community knows that when you add the word “special”, or any variant of it, to something it automatically boosts the cost of the product or service by at least 20%. Not here. One-day passes for adults: $15; kids: $10: special needs: $0. Can't get much better than that!

I read an article about it in Family Circle. This choked me up when I read it:

"Before the park, I had to sit back and watch everyone else play," says 18-year-old Miguel Castro of San Antonio, who has spina bifida and is in a wheelchair. He celebrated his 17th birthday party at the park. "If I had to pick a favorite ride, it would be the swings. I hadn't been on one since I was 2 or 3 years old, and didn't really remember what it felt like," says Miguel. "Now I can go on them whenever we visit, and have fun like everyone else. It means everything to me."

Can you imagine not being able to remember what it felt like to be on a swing because your body wouldn't allow you to get into one after the age of 2 or 3? How many times did you play at the park or on the school grounds for recess with your friends? Did you slide down a huge slide or sit in the tire swing with a couple of buddies and spin, spin, spin till you got so dizzy you almost threw up? Did you play tag and chase each other on the monkey bars? In elementary school, we called the playground equipment “the big toy”. I have lots of awesome memories from playing on that thing.

My daughter has never and WILL never be able to play on a big toy. She can’t get on those swings or go up and down that slide even though she really, really wants to. I don’t even go anywhere where she would be watching other kids screaming in delight on one because of the torture on her face. If you think I’m exaggerating, take your own kid, niece, nephew, neighbor’s kid, whoever, to a park, sit them right in front of it and tell them they can watch from their seat but they can’t get up and they can’t go play.

That all sounds depressing, doesn’t it? I just keep in mind that it’s only one thing she can’t do. But I often wonder what the heck I’m gonna do when my son gets old enough to want to go to the park. I can’t NOT let him go; I can’t take the girl. The only thing I can figure is I will have to have separate play dates with my own kids!

I wonder what other parents of kids with and without disabilities do in these situations??

A Mom Missing Out On Her Milestones - Children With Disabilities

“Well, this is all she’s ever known so it’s not like she’s sad about what she doesn’t have anymore”

“She was born like this so she doesn’t know any other way to be”

“Look at Sara. She was born like that and she’s always so happy” (Sara is my aunt who is now in her 60’s and deaf)

These were all things I would be told when I would get sad about my daughter being disabled. She can’t sit, walk, talk, feed herself or transfer herself from one spot to another. She will never go to sleepovers, drive, graduate from high school, or get married. Please don’t say ‘you never know’ because yes, it’s true, miracles do happen and I am a woman of faith but as things are right now, this is reality. I can say these things without breaking down at this moment but it hasn’t always been this way. (There are still days when I can’t think about these things without losing my mind but thankfully those days don’t happen as often.)

I am confident that the people telling me these things are only trying to help. I guess what I was supposed to see was that she hasn’t lost anything…she never had it to begin with. Okay, I can see the logic behind that thinking but it just doesn’t translate into real life. Not with me, anyway. I know for a fact that many people who were born with their disability are perfectly aware of what they don’t have. And believe you me, I was fully aware of what I didn’t get to have.

What I was supposed to have was a baby who would come home with me when I left the hospital. She was going to smile and sit and clap her hands. She was going to pull herself up to stand and walk across the kitchen floor. She was going to sit in a dining room chair and eat her cereal all by herself. She was going to reach up for mommy’s hand and bounce along beside her, crossing the parking lot of Target, pigtails bouncing, sneakers flashing.  She was going to kindergarten. She was going to make mommy breakfast in bed – crispy toast broken into pieces because the butter was tough to spread, a glass of OJ dripping onto the tray and a flower made from construction paper grandma helped her make. She was going to sit next to mommy’s head while mommy lay in bed on a sleepy Sunday morning and brush it and put all these crazy ponytails all over it because that’s what mommy did with grandma when she was a little girl. 

I was going to have a little girl who would call me mommy.

So maybe she doesn’t know what she doesn’t have. But I DO. So if I cry or am sad about the fact that I missed out on my milestones please understand that I am allowed to mourn for the child I thought I was going to have. The one I did get is smart, funny, confident, strong-willed, gorgeous, loving, strong, protective, a daredevil and an awesome kid to have around! And the truth is I would not be who I am right now if I wasn’t blessed with her. But that does not mean that I can’t mourn for the little girl I was expecting.