Wednesday, November 6, 2013

Shooting at LAX - How YOU could have prevented it

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

 So, I ask his roommates and friends: Why didn’t you ask him if something was wrong? Why didn’t you ask him if he needed help? Why didn’t you ask him to dinner, to drinks, to a game, something, anything, to feel him out?? And if some of you did, and he denied there being a problem, why didn’t you try harder? All of them are now saying, “I never thought he could do something like this.” Really? Well, guess what? He could and he did. Just before the shooting, his family in New Jersey called the police in their area to ask they contact the police in Los Angeles to do a welfare check after receiving a series of odd texts. They were concerned that he was getting ready to hurt himself. Unfortunately, the police arrived about 45 minutes too late. A roommate had already driven him to LAX and the shooting had already commenced.
Now two families are suffering tragic losses. The family of the shooter is suffering with shock and disbelief and grief. They will undoubtedly be judged for their son’s actions for a time to come. Officer Hernandez’s family is suffering greatly as well. His unnecessary and untimely death will impact every family member for the rest of their lives. His is the first death in the line of fire of a TSA officer since its inception in 2001.

Now I want you to THINK. Think about the people in your lives. Your friends, your sisters, brothers, uncles, cousins, your co-workers, your Facebook contacts. Is anybody standing out in your mind because they’ve changed? Has anyone stopped interacting as much as they used to online or stopped showing up at social outings they were always a part of? Does anyone who used to be talkative now barely speak? Has someone become withdrawn, seem sad or mad all the time or talk about odd topics you’ve never heard them talk about before?
Invite them to lunch. Stop by their home with bagels and a box of joe. Ask their immediate family members or other loved ones if they’ve noticed the same thing. Follow your instincts – if your gut is telling you something is off, then it IS. Don’t wait for somebody else to do something. BE THAT SOMEBODY. You could save a life! After the LAX shooting – and countless others in very recent history – that is an unfortunate understatement.


Friday, August 23, 2013

Morning Fantasy - A Mother's Dream Come True

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

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

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

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

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

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

Monday, August 12, 2013

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?

Monday, June 17, 2013

4 Things My Mommy Imagination Ran Wild With

The boy had a sleepover at grandma’s last night and I almost feel like a new woman! For such a tiny person, he sure does take up a lot of space in the bed. Yes, he very often sleeps in our bed. When I was pregnant, and even after he was already here, I swore that I would not be one of those parents who would allow their child to crawl into bed with them, no matter what, but real-life has shown me that sometimes no matter how sure you are in your mind that you will be one way, your kid decides otherwise for you.

Here are 4 Big Ideas I had going into this baby thing that didn’t quite turn out how I imagined:

1.  He would have the most comprehensive & complete baby milestone book on the face of the planet – I imagined myself writing down the date and time, right down to the very second, that my boy hit every milestone. (I briefly considered using latitude and longitude coordinates to precisely identify the location the "first" took place but scrapped that idea when I remembered I have no clue how to figure that out.) His first smile, the first time he sit up on his own, the first projectile poop (That one was on daddy. Yes, on daddy. Twice. In the same day.) 

I envisioned this cutely decorated scrap book filled with snapshots and notes that we could look back on together when he was grown. Currently, he is 20 months old and I have one picture marked “first time drinking from a juice box” that I just tagged a few days ago in my pictures folder on my laptop. Don’t get me wrong, I have a bunch of photos and videos of him doing things – you know, important things like batting at a fluff on the carpet with his back to the camera – saved on my hard drive but they are in random order with no tags or captions. There’s a picture frame on his wall with a cutout for each month and a big one in the center for the 1st birthday picture. I managed to put in photos that I guessed were months 1-10 just before his 1st birthday but am still missing months 11 and 12. Maybe I can get around to it before his 2nd birthday.

2.  Each person would sleep in their own bed – I know there are some moms (and dads, too) who think the best place for the parents & children to sleep is in one big, comfy bed. I do not subscribe to that theory. Unfortunately, my son does. They call it a “family bed”; I call it “I’d rather sleep on the couch because it’s more comfortable than my own cramped bed”. Up until he was about 11 months old all we would have to do is lay him down in his crib for naps and bed time and he would happily soothe himself to sleep. Out of nowhere, the script was flipped. I can almost hear the sound of a record scratching in my head when I think of the 360 he made. It began with him crying to be picked up. Ok, we decided, we’ll let him ‘cry it out’. But he would cry until he threw up. Eventually, he would skip the whole crying part and stick his hand down his throat to induce vomiting. This kid cuts right to the chase. We moved his crib to the foot of our bed, hoping being close to us would be good enough but no, he’d rather be scrunched up in bed with mommy & daddy. Wait, who am I kidding? The only ones scrunched up are mommy & daddy – baby is sprawled out like a king while we try not to fall off the edge of the mattress he's relegated us to nightly!

3. He would sleep through the night after he turned 1 – 

I really figured that by 13 or 14 months old, he’d be sleeping through the night. My zombie eyes and foggy brain prove otherwise. Up until about 16 months he was still taking 3 bottles a night! I’d like to say that I trained him to not need any milk through the night but truthfully he just grew out of it himself. What he does still do is wake up and insist on climbing into bed with us. You see, we transfer him to his crib after he falls asleep on our bed. But when he wakes and realizes he’s been moved, he screams and cries until he can get back into our bed. We must have a magical mattress because there’ve been times where I’ve woken to find him asleep, upside down at my feet. He’d climbed out of his crib onto our bed but didn’t quite make it to the top! He’s so sleepy, all he needs is to be in our bed, even if it is by daddy’s stinky feet (my feet do not stink).

4. We would eat veggies and healthy food every day, all day – Yeah, right. When I was a kid, my
mom had to tell me that every meat I was presented with was chicken, I wouldn’t eat anything dark, all the crust had to be removed from my bread & no vegetables or fruit (aside from bananas) would pass my lips. As I got older, I was known as the “Chef Boyardee Girl” because that was practically all I would eat. Then I went through a mashed potatoes-only phase. You could say I was a slightly picky eater. Turns out the apple doesn’t fall too far from the tree. I’ve read articles that recommend camouflaging veggies in foods kids love naturally. So being the crafty mom I am, I try to give him mac & cheese with broccoli mixed into it. It’s kind of amusing to watch him take a bite, chew it up a bit then let it dribble out of his mouth, down his chin and onto his belly, all the while eyeballing me with that “Go ahead. Test me” look. I’ve occasionally managed to trick him if he’s really hungry but usually you’ll find me trudging back into the kitchen to get him real mac n’ cheese.

Yep, things rarely turn out as how we imagine them. Especially when there’s a kid with his own ideas involved!

What are some things that you expected that didn’t quite turn out the way you thought it would?

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Tuesday, June 11, 2013

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.

Monday, June 10, 2013

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 “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?

Wednesday, March 27, 2013

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?

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.

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?

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?

Saturday, March 23, 2013

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 

Thursday, March 21, 2013

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!

Tuesday, March 19, 2013

Reverse Inclusion


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 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 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!!! 

Wednesday, February 20, 2013

Forced Sterilization of the Disabled


Eugenics is a despicable part of the history of the disabled community. This trend, which had its inception towards the late 1800’s, attempted to improve the quality of American citizens by implementing restrictive social policies that discouraged marriage and/or reproduction of individuals who were presumed to have inheritable undesirable traits. In other words, if you had, or accused of having, any type of disability, it was unlawful to marry or have children. Without even a shred of evidence, it was believed that all social ills, such as prostitution, promiscuity and even poverty, could be linked to people with cognitive disabilities.

During this movement, a tiered hierarchy of defectiveness developed in order to be able to categorize different levels of “feeblemindedness”. Idiots referred to individuals with a mental age of two years or less; imbeciles represented those with an arrested mentality of three to seven years; and morons referred to those attaining a mental age of no more than twelve years of age (Snyder & Mitchell 624-625). These words we throw around today as a general insult were actual medical terms in the late 1800’s, early 1900’s!

Using this pseudo-science as a rationale, prominent figures – doctors, scientists, lawyers and others – of the early twentieth century attempted to purify the American race by passing legislation legalizing compulsory sterilization of individuals believed to be "feeble-minded", epileptic, or otherwise “socially inadequate” individuals. Because this latter criterion was so broad the number of people who were at risk of falling into this category was almost infinite. Those who were institutionalized were almost guaranteed to be sterilized. Approximately 60,000 Americans were sterilized due to compulsory sterilization of institutionalized patients. Although it was a topic of interest throughout the world, the United States was among the less than a handful of countries most involved with this pseudo-science. Between 1907 and 1937 thirty-two states required sterilization of various citizens viewed as undesirable: the mentally ill or handicapped, those convicted of sexual, drug, or alcohol crimes and others viewed as "degenerate"(McCarrick & Coutts, 2010).


Carrie's wedding photo after being deinstitutionalized

The most infamous case of eugenic sterilization was that of young Carrie Buck. Shortly after her birth, her mother was placed in an institution for the feebleminded. Carrie was raised by foster parents and attended school until the sixth grade. At 17, she became pregnant. Her foster parents committed her to an institution on the grounds of feeblemindedness and promiscuity. She gave birth to a daughter who was adopted by her foster parents. The child died at the age of eight due to complications resulting from the measles. Soon after being committed, Carrie was picked as the first patient to undergo forced sterilization after the enactment of the Eugenical Sterilization Act in Virginia. Officials claimed that Carrie and her mother shared the hereditary traits of feeblemindedness and promiscuity therefore Carrie was the "probable potential parent of socially inadequate offspring." (Lombardo) In Buck v. Bell (1927) the Supreme Court of the United States upheld the sterilization law, with Justice Holmes infamously proclaiming in his opinion “Three generations of imbeciles are enough.” Carrie Buck, along with her daughter, Vivian, was sterilized

But this “justice” was in actuality an abuse of government and law which by extension was abuse of “degenerate” citizens. Carrie was not promiscuous; she was raped by a nephew of her foster parents who sought to cover up the family embarrassment by institutionalizing her. At her trial, “experts” who had never even met with Carrie testified to her feeblemindedness and moral inadequacies (Lombardo). Not only was her defense attorney childhood friends with the prosecuting attorney, he was also a longtime supporter of sterilization and a founder of the colony to which she was committed (Lombardo). School report cards showed that Carrie had passed each year with very good marks and Vivian had made the honor roll (Pitzer, 2009). She and countless others were the victims of corrupt individuals who used their education and standing in society to abuse the judicial system in order to reach personal political ends.


The Nazis cited the American eugenics ideology as their model behind their “ethnic cleansing”. The systematic murder of over 250,000 disabled people between 1939 and 1945 helped to finally dilute the fierce support for engineering a master human race here in the U.S. Fortunately, we have seen the end of compulsive sterilization albeit more than a little late for the more than 65,000 people in the United States alone who were forced to endure this procedure. Thank goodness, too, because if forced sterilization was still in effect, Myra Brown would never have a chance to become an honors student with the goal of attending the University of Cambridge in England.


Lombardo, Paul. "Eugenic Sterilization Laws."Eugenics Archive. N.p., n.d. Web. 4 November

2010. <>.

McCarrick, Pat, and Mary Coutts. "Eugenics." Bioethics Research Library at

The Joseph and Rose Kennedy Institute of Ethics, July 2010. Web. 3 November 2010.


Pitzer, Andrea. "U.S. eugenics legacy: Ruling on Buck sterilization still stands." USA Today (2009): n. pag. Web. 1 November 2010. <


Snyder, Sharon, and David Mitchell. "Eugenics."Encyclopedia of Disability. 2. Thousand Oaks,

CA: Sage Publications, 2006. Print.

Thursday, February 7, 2013

Another not-so-great doctor visit

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.

Monday, February 4, 2013

Is inclusion a good thing?

           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.

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?

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.

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?

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

Monday, January 28, 2013

A Swimmer With No Limbs!!!

Just keep swimming...
I saw a photo of a swimmer waiting to jump into the water. He had on the swim cap, goggles and speedo uniform of any swimmer. But this guy was a little different from the typical. He was being held up in standing position by another man standing behind him. He also had only one leg – which turned out to not be his actual leg, just a prosthetic. Oh, and he didn’t have any arms. WHAAAAATT???
What the heck is going on? Is this one of those photoshop things?

Nope. It’s Nick Vujicic, pronounced ‘Vooy-cheech’. He was born in 1982 in Melbourne, Australia with no arms and no legs, surprising his parents, his mom who was a nurse and his father, a pastor. Here’s the opening paragraph of his bio on his website:

Imagine being born without arms. No arms to wrap around a friend ; no hands to hold the ones you love; no fingers to experience touch ; no way to lift or carry things. How much more difficult would life be if you were living without arms and hands? Or what about legs? Imagine if instead of no arms, you had no legs. No ability to dance, walk, run, or even stand. Now put both of those scenarios together… no arms and no legs. What would you do? How would that affect your everyday life?

Pretty intense. I can’t imagine this scenario. But Nick has lived it. He has fought through bullying and teasing, loneliness and depression. He has earned a Bachelor’s degree with a double major in Accounting and Financial Planning. He has become a motivational speaker, beginning at age 19. He has shared his testimony and brought the Gospel of Jesus. He has moved from Australia to California, USA and begun a non-profit organization, Life Without Limbs. 

Lotta good stuff, if you ask me. Check out his website and consider helping out his very good cause!

No belly flops here!

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 

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.

Sunday, January 13, 2013

MLK Day of Service

Martin Luther King day is a day people usually look forward to because they get the day off from work. How about making this a Day of Service? Can you commit to doing something good for your community on this day as a show of honor for what MLK did for us?

Find something in your area: Martin Luther Kind Day of Service

 Join my community on Google Plus and share with us what you plan on doing.
You just may inspire someone else to make an impact!

Friday, January 11, 2013

Affordable Care Act - Your Health Coverage Options Explained

Affordable Care Act  

Times, they are a-changing! Finding health insurance is a huge pain in the you-know-what for millions of Americans who don’t have steady employment. Even for those who do, it’s complicated and expensive! Before the end of the year, we will all have new options and purchasing power we have never before had through the Affordable Care Act (ACA), passed by Congress then signed into law by President Obama on March 23, 2010 & upheld by the United States Supreme Court on June 28, 2012.
Here are some FACTS about what you can expect:

ACA Title I
  • Reduces what you have to spend on health care by
    • Capping out-of-pocket expenses
    •  Requiring preventive care to be fully covered
  • If you like the coverage you have, you can keep it
  • Provides hundreds of billions of dollars in tax relief – the largest middle class tax cut for health care in history 
  • Members of Congress will also be required to purchase their insurance through the same Exchanges regular Americans will (See below for more info regarding Exchanges)
  • Small business owners will receive a new tax credit to help offset the cost of covering their employees
  • Pre-existing conditions will no longer be a basis of denial of coverage
  • Better appeals process

ACA Title II
  • Extends Medicaid while treating all States equally & preserves CHIP 
  • Provides States with opportunities to expand home care services to people with long-term care needs 
  • Reduces prescription drug costs and payments to subsidize care for uninsured Americans

There are a total of 10 Titles to the Affordable Care Act. If you want to read about them in depth, CLICK HERE

Affordable Insurance Exchanges

Historically, the individual and small group health insurance markets have suffered from adverse selection and high administrative costs, resulting in low value for consumers. Affordable Insurance Exchanges work similar to “Travelocity” where individuals and small businesses can look for the best deal in their state. Open enrollment is supposed to begin by Oct. 1; consumers will be able to use federal subsidies to purchase coverage by Jan 1, 2014.

How Exchanges Can Help YOU:
  • Exchanges pool people together, reduce transaction costs, and increase transparency so they create more competitive markets for individuals & small employers
  •  Eligible individuals will be assisted in receiving premium tax credits or coverage through other Federal or State health care programs
  • One-stop shopping means buying health insurance will be easier

Exchanges In Your State:

On January 3, 2013, the total number of states with approved health insurance exchanges has been bumped up to 17. DC has also been approved. States which have not set up exchanges can decide to partner with the federal government, overseeing certain parts of the new exchange, or leave the entire task to the government. They have until Feb. 15th to notify the feds which way they will go.

If you would like to see where your state falls, CLICK HERE
At this time (Jan. 11, 2013) the latest update was on Jan. 4th. Check back on Feb. 15th to see the final decision by your state!

Other Links: