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?

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?

NYC Schools Including "Other" Kids

In 2010, NYC launched a city-wide effort at 260 schools to integrate more students with special needs in mainstream classrooms (aka: INCLUSION). It has been in effect for about a year now.

And it’s looking promising!

According to this article, the Department of Education has shared the following: 

v  Students with special needs in schools that participated in the first phase of the initiative saw their test scores improve more than students with disabilities at similar schools that were not in the program

v  Their attendance rates rose more than the students with disabilities at similar schools

v  Suspension rates fell more than the students with disabilities at similar schools

Corinne Rello-Anselmi, the Department of Education deputy chancellor in charge of special education is quoted as saying that this type of learning requires “a new way of thinking about how to assign students to classroom settings “. No truer words have been spoken.

There is still more to be done and more information is needed to evaluate the endeavor thoroughly but this article was music to my ears!

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!!! 

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

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!

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. 

Communication Needs On A Flight

Flight Attendants Don't Know Everything?

I just finished reading an article about how a teen with autism that uses an iPad for communication was told to put the device away by a flight attendant on an American Airlines flight. When I read the headline, “Airline iPad Policy Sparks Disability Dispute”, I thought I would be angry by the time I finished reading the article. But then I realized, this is the perfect teachable moment.
 

The teen’s aide explained that the iPad was her method of communicating and the flight attendant (according to the article) responded by saying “with all her years of flying that she’s never seen or heard anybody using an iPad to communicate before”. She was simply following Department of Transportation guidelines and the policy of the airline. The first thought that came to mind was – how old is this lady? Then I thought – how is it that people still don’t know about this great age of technology that we live in? Also – how does such a large corporation such as American Airlines still not have their policies reflect these great advancements? Of course these things are obvious to me; this is the world I live in. So it’s unfair to automatically assume that someone is just being a big jerk. With that in mind, I’d like to take a moment to educate those of you who are blissfully unaware so that you don’t become the jerk in an article over a misunderstanding.
 

Communication Needs

DynaVox

For someone who is non-verbal, taking away their communication device, whether it is an iPad, DynaVox or flip cards is like taping your mouth shut with duct tape. Would you like to sit through a flight or car ride or football game and not be able to express your thoughts or feelings? I know sometimes you wish you could tape someone ELSE’S mouth shut but let’s focus here. Really picture yourself doing something you do daily – chatting with a coworker, ordering food, explaining medical symptoms to a doctor, telling a joke – and do it with duct tape over your mouth.

Some of you may think, “ok so I’ll just gesture with my hands, point to what I need or nod my head”. Let’s see what would happen if you tied your arms down to your body so that you couldn’t use them and couldn’t stand up or walk, either. That’s how it is for people like my daughter. She can’t do sign language and her pointing and gesturing ability is limited. You might also think, “it’s just a short plane ride – what’s the big deal?” Well, besides the fact that that’s just plain stupid, what if the person has a medical emergency coming on (for example, some people get auras right before they have a seizure) or a leg cramp or just realized they need their medication or need to use the restroom? All very important reasons to be able to SPEAK!

 

The End Result

 

For those of you interested, according to the article the teen was able to keep out her iPad after an intervention from the pilot. Thinking about the commotion that must have gone on that would prompt the pilot to mediate, I would have been very embarrassed if it was me in that teen’s shoes. I’m sure there were some jerks on that flight who were annoyed that their flight was being held up “over an iPad” but now that you know why it’s so important for some to be able to hold on to their personal devices YOU won’t be that jerk if the situation ever arises! Hey, you may even be able to intervene on behalf of the person who can’t communicate as easily as you can! And that person will be blessed to have a good Samaritan around at just the right time!

Handprints on the TV - A Milestone In A Family With Disabilities

We reached another milestone today. Handprints on the TV screen. I’ve been unknowingly waiting for this one and I couldn’t be more excited than if the boy had recited the alphabet today at 10 months old!

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One day, when the girl was 9 years old, we came home from the mall or somewhere and were “unwrapping”. That’s when we remove the chest harness, unbutton and remove the coat, unwind the scarf, strip off the sweater and take off the shoes. It’s a process as many of you well know! We were doing this in the dining room and I dropped her shoes in the corner, out of the way of her wheelchair so it wouldn’t block our path. I gave her a snack and took her to her room to stretch out in her bed and watch some TV. The unwrapping can take up to 10 minutes, depending on how cooperative the girl is and how many layers I need to peel off of myself, and the snack about another 15. Getting home from the mall can be exhausting!



Innocent yet mocking

When I got back to the dining room to clean up the snack mess I noticed her cute little black Mary Jane’s sitting in the corner of the room. Suddenly, the room shrunk to the tiny spot they took up and I was paralyzed. I remember thinking specifically, “Those shoes could be anybody’s shoes.” Walking up to my main door, anybody visiting my home would know immediately that there was somebody in this house that needed some assistance due to the wheelchair ramp. Other clues could be the wheelchair accessible van in the driveway; once inside, the backup manual wheelchair that is usually rolling from room to room with no permanent storage spot; the communication device that’s almost always on the dining room table; the roll-in shower; the bed rails...

But these shoes – these she wore without her orthotics (leg braces) so they were just regular ol’ shoes. Those shiny little shoes, so innocently sitting there. Mocking me with a deceitful beauty. It occurred to me that nobody could tell that their owner was disabled. They could have belonged to a blonde who had a thing for tiaras; the winner of last year’s Suffolk County Spelling Bee; the star of Abby Lee Miller’s Dance Company. That last thought was the one that froze me. My throat closed up and my chest tightened and they just sneered at me, filling my head with thoughts of little girls tapping, twirling, hell, just WALKING in them. But the soles of these were brand spanking new. They had been worn at least a dozen times yet not a scuff, not a scratch, not a scrape on them. They belonged to a little girl who did not tap nor twirl.

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My boy gives his mother the privilege of living through the things that most moms cringe at. I know a mom who is so anal about handprints that she wipes her microwave free from said prints several times a day! When her children were little, like 3 or 4, she would clean up their room WHILE they were still playing with their toys. Me? I’m going to leave the prints up for a while. When the TV is off, I like walking past it and seeing the proof that there is an adorable little boy in this home who is going to grow up to run, jump and yes, walk. 

Let's Go Swimming!...Maybe - Accessible Pools in Public Places

Public Pools and the ADA

The Americans with Disabilities Act (ADA) outlines the rights of people with disabilities and forbids discrimination of any kind towards this group. In 2010, the Department of Justice (DOJ) sought to apply this regulation to public entities that offer a pool or spa, such as hotels, by requiring them to make these amenities accessible. 2 ½ years later we are still waiting.


Apparently 2 years is not enough time to sort out what exactly the government means when it says “pool lift” or “sloped entry”. So no swimming for you if you’re unable to get yourself in and out of a pool and there's no one around to help you, buster!

Thanks to hotel lobbyists, such as the American Hotel & Lodging Association (AH&LA), who pushed hard to extend the deadline for compliance set forth by the DOJ and Senator Jim DeMint (R) who introduced a bill to do just that right before the previous deadline of March 17, 2012, the NEW, new deadline is January 31, 2012. To some people, I guess as long as THEY are not affected, accessibility doesn’t matter too much. Official deadlines for when these public entities were supposed to be in compliance have been extended repeatedly since 2010 – at least a half dozen times – even though these businesses were well aware that they were obligated to make these changes.

"Reasons" Against Making Pools Accessible

Some hoteliers who oppose the DOJ requirements threatened to close down their pool entirely or to fill in their spas. BOOO-HOOOO! WAH-WAH-WAH! You sound like a bunch of crybabies – “If you make me do that then I just won’t have a pool for ANYBODY!” The image of a two year old stomping his feet with his arms crossed and his bottom lip pouting springs to mind. Fine by me; lose ALL your business if that makes you happy… Another argument made by the competent and crafty hoteliers is that installing a permanent lift will increase their liability during times when there is no lifeguard on duty. UHHHHH, hold on a minute. Are you saying that able-bodied folk NEVER go in swimming pools outside of posted hours? DAMN those insolent handicapped rejects! Why can’t they obey the rules like their astute counterparts? You know, the normal people!

Family Ties

Imagine going on a family vacation with your children and leaving one of your kids at home or pool side or in the hotel room because they were too big for you to lift in and out of the pool. Imagine if your husband or wife was a quadriplegic and had limited use of their arms and couldn't help you help them get into the pool. Imagine if it was YOU; watching from the sidelines or just not even going at all!  This does not sound fair. It sounds miserable, depressing, demoralizing. To be treated as less-than, unimportant. Am I taking this too far? Really? My daughter’s ability to be able to socialize and vacation with her parents and brother is directly related to whether or not we can get her wheelchair where we are going. Read about when we were on a family vacation and couldn't get pizza and ice cream. Saying to her, “You can’t go to there because your wheelchair doesn’t fit there” is the same as saying “You’re not important enough to make a change that can open up your world”. Literally.

Any one of us (yes, even YOU, dear reader) could BECOME disabled by an accident or fall, sickness or aging; just because you weren't BORN disabled doesn't mean you never WILL be!!

A Growing Girl - Be Careful What You Wish For

I was having an e-mail conversation with a friend who also has a daughter with CP. I was telling her how my 15 year old daughter is still so obsessed with Barney (right now it’s Barney’s Great Adventure) and Nick Jr. type of shows. I commented on how we can’t even have a family movie night because she refuses to watch anything other than the shows she watches over and over (and over). It reminded me of an experience I had with her not too long ago.

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About 4 years ago I went to this event put together by a church I used to attend. They had a breakdancing competition with a live DJ and everything. I thought it would be a cool thing to bring my daughter to because there would be music (which she loves) and other kids and new people and I thought she’d like to see the breakers do their tricks. So I loaded her and her wheelchair up in the car and headed over there. (Read about what "loading her and her wheelchair up in the car" entails here.) I had been looking forward to going with her for the entire week and was excited! I thought this could be something fun we could do together that would make a great memory...something "normal" that typical families enjoy together. As soon as we got there, though, she wanted to leave. I mean, she wanted out of there immediately. I stuck around for a while, trying to spark an interest, pointing out the breakdancers flipping around, showing her the DJ booth. But she would have no part of it. She wouldn’t even give it a chance and I was so upset. I gave up, packed her into the car and headed back home, deflated. I was so sure that she would enjoy it and that it would be something fun we could do together, maybe meet some new friends, create some new memories. I was crying by the time we got home because I felt like I was robbed of a dream. I really thought I was going to be able to do something “normal” with my daughter.

After we got home and she was safe in her bed I really lost it. With tears rolling down my face, I just kept screaming up to the heavens, “PLEASE! JUST LET HER GROW UP A LITTLE!” “WHY CAN’T SHE JUST GROW UP?!?” I wanted her to grow out of the Dora and Barney kiddie stage and move on to the older kid stage, the one where iCarly is cool. I wanted to be able to take her to see a breakdancing competition. I wanted to be able to have a family movie night and watch a Disney princess movie or Monsters, Inc. That’s one of my many fantasies - having a family movie night. It sounds kinda lame but what can I say? I’m just being honest here. But we can’t do that because the baby shows she watches don’t really make movies.

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Thinking back on it I wonder, “What am I asking for?” What will her emotional evolvement come at the expense of? Today, my daughter is 14 and shows no indication of having an interest in boys. (And please don’t tell me to be grateful for that) She doesn’t feel sad because she doesn’t get invited to birthday parties or doesn’t have girlfriends to chat on the phone with (not that she could). She is perfectly content spending her days with her parents, brother and other family. If she were to “grow up” as I begged for, and grow out of the kiddie stage, would her desires change as well? Watching shows like iCarly may only serve to show her the things she doesn’t get to do like sleepovers or cheerleading. My asking for family movie night may bring sadness into my daughter’s heart because she may begin to long for the affection of a 14-year-old heartthrob.

In “The Monkey’s Paw” written by W.W. Jacobs, three wishes are granted to the holder of the paw but not without an enormous price. A mother who lost her son wished him to come back to her and he did. After he had been buried for a week. She got her wish but not in the way SHE pictured it.

I have decided to never again wish that my daughter would just grow up a little because she may end up paying a very high price for my charges.

Vanity & Botox In The Disability World

I have a certain amount of vanity for my daughter. Okay, a tremendous amount! She’s got a beautiful face, gorgeous hair and a skin tone that the New Jersey Tan Mom would commit second degree murder for. She’s bright and funny and loves her family. People at her school, people in the mall, people at the doctor’s office tell her all the time that she is so pretty and mommy dresses her so nice. And you know what? They’re right!

Forgive me for feeling an extraordinary amount of jubilation when people tell her how beautiful she is. Pardon me for having a bit of a cockiness about me when we’re at the mall and people walking up behind us pass us, then look back to see what the girl in the wheelchair looks like and they see that she looks like any other kid, but with extraordinary beauty.

Medically speaking, I would say she’s needed a minimal amount of intervention considering the trauma she sustained when she landed on this planet via C-section. Yes, she needs physical, occupational and speech therapy. Yes, she’s non-verbal and non-ambulatory. Yes, she needs hand-over-hand assistance with everything including playing. But she doesn’t have any heart problems; her hearing and eyesight are perfect; lungs, kidneys, intestines, bladder – all good in these departments, too. Her hips needed a little surgery in 2007 but are perfect now. So forgive me if I am a little conceited about the fact that she’s never needed any other special type of therapy or intervention for her well-being. It feels great going in to the doctor’s office (any doctor) and responding with, “She’s doing great!” when asked, “So how IS Miss Brianna doing these days?”

And you really must forgive me for being sad and finding it almost impossible to not cry when the doctor tells me that I should think about starting botox injections in her hamstrings and ankles. You see, her muscles are getting very tight and currently, she can’t straighten out her legs completely. And if we don’t address this now, it will only get worse. It will get to the point where she is in a permanent crouching position. Of course we don’t want that! And I know that there can always come a time where we have to do something new because she is getting older, bigger, heavier.

KNOWING she has CP and a myriad of secondary conditions that can (and most likely will) worsen does not make it any easier to hear it confirmed out loud.

Family Fun – How Barriers to Access Can Ruin A Vacation

So we went on our first family vacation. I was very excited; maybe almost more so than my daughter, if that’s humanly possible. And now that I’m back, I see it wasn’t all perfect but I’m definitely glad we did it.

A Family Resort

We went to Smuggler’s Notch which is a family resort in Vermont. I chose to go there because they have an adaptive program that the girl would be able to enjoy. While at camp, she went kayaking, swimming and swung on a Giant Swing, to name a couple things. Oh, she was also serenaded by a friendly pirate! The grounds were beautiful. Whoever did the landscaping should be commended. I saw the most unique and interesting flowers and bushes that threw off such a beautiful aroma as you walked down the different paths in the Village Center, which is the main resort area. The condo we stayed in was mostly wheelchair accessible. It was a very nice-sized apartment with comfortable beds. It was supposed to have a wheel-in shower but instead we got a sauna tub. Lifting her in and out of the tub would have been totally impossible if not for my strong hubby. One of their on-site restaurants, Morse Mountain Grille, is absolutely AMAZING. Everything we tried tasted gourmet. Even their white pizza was better than anything I’ve ever had in NY. Needless to say, we had most of our meals there!

Disability World

So what’s this post about? In the midst of all the fun and beauty, it struck me (again) how able-bodied folks can be so clueless to the fact that the tiniest little thing, like a 1-inch gap, lip, crack, whatever, in a sidewalk or doorway can completely block a person who is non-ambulatory (like my daughter and by extension, us) from entering a building, crossing a sidewalk or enjoying family time. I can’t really blame folks who don’t live in the Disability World for not knowing. It’s just not a path you’ve walked (or rolled in, so to speak) so I can’t expect you would know it without being educated on it. That’s what I’m here for.

Barriers to access are anything that block a person from accessing a public space. This can be something as simple as a single step into a building or narrow pathways in a department store to larger barriers such as no elevator in a multi-level building or the lack of a pool lift for wheelchair-users at public pools. 

Use Your Imagination

To all you walkers: imagine if you were on your way to a beautiful exotic island where there were gorgeous sunsets and the most awesome poker tables (for those of you readers who don’t really care for sunsets). You would be with your favorite people and you all had planned what you would do every day and every night together. You have all been looking forward to this getaway for so long and finally the day has arrived. You watch out your window as the plane roars down the runway; you’re all so giddy with excitement you can’t stop talking about what the first thing you’re each gonna do is. Finally, the plane touches down; you all grab your carry-on’s and walk towards the front of the plane where the pilot waves you off to your destination. You turn to disembark and notice that the jet bridge is about 3 feet away from the plane’s exit doors. You see, the jet bridge is old and doesn’t quite reach the plane but it’s allowable because it was made before the laws changed that made it mandatory that all jet bridges reach the planes’ exits. Sounds a little wonky but that’s ok because as long as you can step across, you’re fine…Wait a minute! You can’t reach it! Your legs are too short! Your loved ones are all taller than you are and are able to walk across. You can’t cross the jet bridge; which means you can’t get to the island; which means you can’t see the sunset or play poker. Your loved ones are all going to be able to do this without you. They feel bad you’re getting left behind but surely they can’t NOT go just because YOU can’t. You’re gonna miss out on everything all because of the damn jet bridge being JUUUUUST a little too far for you.

A Huge Barrier

The Village Lodge at Smuggler’s housed the on-site Ben & Jerry’s ice cream parlor, pizzeria, deli and pub for the resort’s guests. If you didn’t want to leave the resort and wanted a slice of pizza or to take the family to get ice cream after a long, hot day filled with fun activities, this was where you wanted to go. Except my daughter couldn’t go there. There is a walkway leading up to the door but there is a 1-inch lip at the end of that walkway that her power chair cannot get over because of its mechanism on its underside. Even if the walkway was made to end flush, once you got in the doors there are stairs galore. Normally, any public accommodation must be made accessible to all except if those changes are not “readily achievable” or when “they are not easily accomplished without much difficulty or expense”, according to the Americans with Disabilities Act (ADA). To read more about the ADA click here.

Not knowing about the barriers to access, we planned to go to get some ice cream with the kids. When we realized we couldn’t get in with the wheelchair it was upsetting, to say the least. The girl didn’t even want the ice cream; she’s just the type of kid that loves to do family things and she wanted to go in to the ice cream parlor with her mom, dad & brother. Instead, dad went in to check what he wanted while mom waited outside with the kids. When he came out, mom went in with his order in mind while he took his turn waiting outside. I felt excluded, hurt, left out, ignored. I felt like an outcast, an outsider. Like I didn’t belong. And I wasn’t even the one in the chair. The biggest part about this is that she knows that the reason we couldn’t go in was because of her wheelchair. I will be honest. I was way more upset than she was. But I wonder how many other families that have gone there for their adaptive program have also felt the way I did.



Maybe sometime soon every jet bridge will reach the plane’s exit doors everywhere, mandated or not.

A Little Girl's Thoughts & Dreams

I've often wondered what my daughter's thoughts look like. You can read a little about her here. Are they pictures strung together like the symbols on her DynaVox (her communication device that's something like a tablet but a little bigger and works similarly to web pages)? Or are they flashes of images just randomly popping up, not necessarily having anything to do with each other? I wonder if she jumps from thought to thought, like she jumps from one thing to another totally unrelated random thing in waking life. For example, using her DynaVox, she will say "snack cart" but not elaborate so I'll have no idea what she was just thinking about. Next thing she does is play a song off her MP3 list, so I guess she wanted to listen to music. Then she'll say she wants to play but then the computer will catch her eye and she remembers she already asked to go on the computer. Or maybe her thoughts are like a slide show. Or just sight words.

I also think a lot about her dreams. There was only once in her almost 16 years that she woke up screaming and crying really hard and I thought maybe she had had a nightmare but of course I have no way of confirming that. When she goes to sleep I'll say, "sweet dreams" and she smiles. I've asked her in the mornings if she had lots of sweet dreams and she always smiles and nods her head yes but I wonder: did she? Does she even know what dreams are? I mean, EVERYONE has dreams, right? Isn't that what they say? So I guess it's safe to assume that she does too.

Photo is from 2003

I can't help but wonder if in her dreams she can walk and talk. I was reading something about a teenage girl who has autism. She is non-verbal too but she spells and has found her voice through writing. Someone asked her if she is autistic in her dreams and she answered that sometimes she is and sometimes she isn't. When my daughter was about 5 or so, I had a dream that she was laying on the floor, floppy, because she had no tone to her body. Then just all of a sudden, she got herself up. She just stood up. It was so realistic because in my dream we were in the house we were living in at the time and everything looked exactly how it did in real life. I woke up right then and
                  I.
                    Was.
                        Devastated.
For that split second, I KNEW what it felt like to have a regular ol' kid and for the second time in her life it was yanked away from me. You know that image of someone standing on a rug and somebody else sneaking up behind him and pulling it out from underneath him? Yeah, that's what waking up from that dream felt like. 

I wonder if she has dreams like these. If she does, I would have to say that they don't devastate her the way mine do to me because she is always smiling when she wakes up. I mean, ALWAYS smiling. I think she knows a secret and just hasn't shared it yet. I can't wait to find out what it is!

A Little 411 On The Girl - Living With Cerebral Palsy

My daughter suffered oxygen deprivation during birth which caused a permanent injury. She now lives with quad athetoid cerebral palsy (CP). Athetoid CP means her tone (the tenseness/softness of her muscles) is mixed. Her trunk has low tone mostly and that's partially why she is unable to sit up unassisted. But sometimes it has high tone, like when she arches back. She usually arches when someone is trying to get her from one spot, like her wheelchair, to another, like her bed. She thinks it's hilarious to see someone struggling. No, really, she really cracks up at this. And the more you say things like, "Oh my God; wait!; stop moving; Oh, no, you're going to fall!", and the more you struggle to get her to cooperate with you, the more she cracks up. If it wasn't so dangerous (you know because falling on the floor & cracking your face open is usually not a good thing!) it would be kinda funny because she's got this crazy laugh. It goes from being loud and honking like a goose to absolutely silent with her mouth wide open and all you see is her shoulders bobbing up and down (I refer to it as the "shoulder shake").

Wings are in "landing mode"

The mixed tone is also in her arms and legs. Sometimes they are very stiff and it's hard to get her to relax her elbows and shoulders. Her arms jut straight out from the sides of her body and when she's in her wheelchair this can be dangerous because she can get them stuck behind walls when we're coming around corners or in doorways. They look like wings on an airplane or bird and I tell her to "bring the wings in, no time for takeoff now"! She has punched a few people from time to time, including me. That's kinda funny when it happens to someone who is annoying, not so much when it’s me. When we're in a crowded place, like in a mall, she could be sitting nice and quiet then all of a sudden she'll get excited about something and her arms will fly out to her take-off position and if there's anyone near her, their butt's gonna get smacked! Ahh, I recall the stunned faces of many a stranger that have turned to see that it was only a 14 year old girl on wheels who has just violated their nether region! That can be pretty hilarious too. I just start to get a little nervous when the person near her is a man and he's facing her because his family jewels are in the line of sight and that can be pretty awkward!

Captain's Log - Medical Log Book To Track Doctors' Appointments

Do you have a medical log book for your kids? If not, you should seriously consider starting one today! I think this is my #1 mommy suggestion because it’s important for all kids – not just those that have special medical needs like my daughter and my son with more than just a pediatrician to keep track of. Think about it. How many times have YOU changed doctors over the years? General practitioner, OB-GYN, other specialists…and how many tests have you gotten done? Blood work, x-ray, MRI, etc. Unfortunately our health care system is not digitalized yet so our doctors can’t access your past medical history unless you know who that doctor was, where they’re located and their fax number in order to request previous records. And that’s only possible if you even REMEMBER if you’ve gotten that test. You can’t make a request for a record at some doctor’s office if you don’t even recall having a record!



My son's Medical Log Book

So, now that I’ve got you wondering how many doctors you’ve forgotten and how many work-ups or scans you don’t recall, let’s not let that happen with your kids! I went to Wal-Mart and got a cute 3-ring binder so that I can save all of my son’s doctor visit records in it. What I do is, at every doctor appointment I request a copy of their notes (we see them write down everything from the temp, BP, height and weight to the nature of the visit and their recommendations). Then, I punch holes in the paper and stick it in the binder! How simple! There are some offices that won't give you a copy so I keep track of every appointment on my “Log Sheet” where I write in the date, doctor/location, and remarks for quick access. This way if I’m looking for the last time I took him to, let’s say, his pediatrician, all I do is check the log for “Pediatrician” and see the date. Then I’ll know exactly where to look so I don’t have to flip through the whole binder (which can get pretty big!) If you’re super organized (like myself; I love the office aisle in any store) you can use section tabs for different things like “pediatrician”, “GI”, “health insurance records” or whatever your organizational heart desires!

 

Aside from the fact that it’s fun to do (you see how exciting my life has become?!?), there IS an alternate reason to start this project. You just never know if something will go wrong and you need to look back at your child’s history to see when it started. Or maybe your pediatrician missed something that she should’ve caught and now you have the notes to prove it.

Enjoy your trip to Staples!