Even YOU Can Become Disabled - Why Visitability Is Necessary

A Wheelchair Wonderland

I remember vividly a point in time where I wished desperately that the whole world was in a wheelchair so that everyone could know what my daughter had to go through just to go to someone’s home. The city of Austin, Texas is creating that world. Well, kind of.

The city council in Austin, Texas is currently deciding on new rules that could make all newly built homes wheelchair accessible. The first two drafts have already been approved so it’s looking good that this third and final draft will push through without a problem. If approved, levered door handles, light switches placed at lower heights and wide doorways will be features required on the first floors of new single-family homes and duplexes. Not widely talked about –yet – this is known as “visitability”. This is a concept in home design that would allow a person in a wheelchair that lives there or visits access the home without any problem. There are cities in the US that already have these rules in place: San Antonio, Atlanta, St. Petersburg, Fla., and Tucson, Ariz. According to the website www.visitability.org, a home is visitable when it meets the following three basic requirements:

     * At least one zero-step entrance

     * Doors with a minimum of 32-inch clearance

     * At least one bathroom on the main floor that is wheelchair accessible

Becoming Disabled

Some of you may be wondering why this is necessary. If you’re reading this and you’re not disabled then you probably don’t view this as important enough to make legal regulations over. But let’s consider that. Just because you weren’t born with a disability doesn’t mean you never will become disabled. Here are three examples you may have never thought about:

1. Old Age

Think about your (or your friends’) grandparents. Do you know any who use walkers, hearing aids, have trouble standing or reaching or bathing or cooking? Did they always have those problems? Most likely, these disabilities are of the acquired type meaning they were born without a disability but because of aging they now have difficulty with one or more activity of daily living. Oftentimes, the word “disabled” is not used when referring to senior citizens if they’ve lived independently their entire lives. But that’s exactly what they have become (and what the large majority of us will become should we be blessed enough to live into our 60’s and beyond). A home built with visitability in mind will increase the chances that a person can live on in their own home rather than being moved into a nursing facility. And by “a person” I mean YOU!

2. Illness

There are also people who are fine into their 30’s and 40’s and then become ill or develop medical conditions which limit their ability to be as independent as they have always been. Multiple Sclerosis (MS) and Lou Gehrig’s disease (ALS) typically begin to appear in adults around this age and are debilitating diseases which cause severe physical disabilities. Don’t think this will happen to you? MS tends to appear between the ages of 20 and 40 in otherwise normally developing people. 15 new cases of ALS are diagnosed daily in the US; 60% are men and 93% are Caucasian.

Arthritis is another large culprit in this area. According to the CDC, nearly two-thirds of people with arthritis are younger than 65. It’s the most common cause of disability and limits or prevents over 21 million Americans from being able to climb stairs, walk more than short distances or work. It’s more common in women than men but affects all racial and ethnic groups. One study shows that the risk of developing osteoarthritis in your knee that causes pain is 45% and estimates show that 57% of people who have had a knee injury or are obese will develop osteoarthritis. That’s about half of you reading this! 

Of course, there are countless other autoimmune & nervous, central and respiratory diseases and musculo-skeletal disorders that can strike at any time and cause disability in an adult who has otherwise lived a healthy and independent life.

3. Accidents

What about those that are in accidents and become paralyzed or receive a traumatic brain injury (TBI)? Have you seen the show Push Girls? Every one of those women was in an accident that paralyzed them. Any of these situations can happen to each and every one of you. Sounds bleak, I know but imagine what your life would be like if you couldn’t enjoy the little things you do now, like going to your sister’s house for dinner or to your friend’s for girls night as you always have because your wheelchair can’t go up the one step leading into their home or your wheelchair can’t get through the doorway into the living room? Now imagine if every new home built allowed you to come and go as you please, without even a thought?

Disabled America

According to the US census, 1 in 5 citizens has at least one disability and the number is set to grow as baby boomers age. Just over 1 in 4 American citizens in their 20’s will become disabled before they retire. But the “that can’t happen to me” mentality keeps most of us from worrying about our futures. 64% of wage earners believe they have a 2% or less chance of being disabled for 3 months or more during their working career. The actual odds for a worker entering the workforce today are about 25%! 

Maybe it’s time you start thinking about what could happen to you or your spouse now and planning ahead. Don’t you think having a home already set up to visitability standards would make your life easier in the long run? I hope to see this concept become the standard in my lifetime for all our sakes.

Would you like to know what the probability of you becoming disabled is? Check out the Personal Disability Quotient calculator here. 

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CHECK OUT THIS POST ON 1800WHEELCHAIR.COM !

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Sources:

http://www.disabilitycanhappen.org/chances_disability/disability_stats.asp

http://www.disabilityscoop.com/2014/01/21/accessibility-requirements/19035/

http://www.alsa.org/about-als/who-gets-als.html

http://www.cdc.gov/chronicdisease/resources/publications/aag/arthritis.htm

Welcome To Holland

This was written by Emily Perl Kingsley in 1987. There is no better way to describe the experience of becoming the parent to a child with special needs:

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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?

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 1^st birthday picture. I managed to put in photos that I guessed were months 1-10 just before his 1^st birthday but am still missing months 11 and 12. Maybe I can get around to it before his 2^nd 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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What A Learning Disorder Is

WHAT’S A LEARNING DISORDER?

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

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

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

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

WHAT A LEARNING DISORDER IS NOT

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

YOU GIVE IT A TRY

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

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

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

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

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

Preschool signs and symptoms of learning disabilities

§  Problems pronouncing words

§  Trouble finding the right word

§  Difficulty rhyming

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

§  Difficulty following directions or learning routines

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

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

Grades K-4 signs and symptoms of learning disabilities

§  Trouble learning the connection between letters and sounds

§  Unable to blend sounds to make words

§  Confuses basic words when reading

§  Consistently misspells words and makes frequent reading errors

§  Trouble learning basic math concepts

§  Difficulty telling time and remembering sequences

§  Slow to learn new skills

Grades 5-8 signs and symptoms of learning disabilities

§  Difficulty with reading comprehension or math skills

§  Trouble with open-ended test questions and word problems

§  Dislikes reading and writing; avoids reading aloud

§  Spells the same word differently in a single document

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

§  Trouble following classroom discussions and expressing thoughts aloud

§  Poor handwriting

GET HELP

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

The Great American Family - Why The Traditional US Perspective Is Wrong

American Families

I am so sick of hearing about the “decline of the traditional family”. People, let’s get something straight here. Politicians are so quick to talk about the “traditional family” but in truth, there is no such thing. That type of family - a father and a mother with children -  was created in the 1950’s as a means to uplift the country’s emotional well-being and as a means to increase commercialism. A quick look back in history shows that white families (European settlers) were focused on maintaining independent households. Women did little child-rearing – this was mostly left up to siblings or servants. Children were not seen as precious or important as they are today.

Not too much changed in regards to the roles of family members until the Great Depression hit. This “traditional family” phenomenon only caught on and spread like wildfire because the depression was so difficult on society that people were craving feelings of happiness. The government played their role in creating this phenomenon by making it economically easier to be married – most government programs were geared towards supporting the family, meaning a married couple with children. And advertisers began to realize the enormous power they had in influencing the American public to buy their brand! What better way to compel them to buy, buy, buy than to show pictures of a happy family using their products? Their trickery worked. Americans wanted that nuclear family they felt would get them out of their bad situations.

The government and commercialism created a false sense of nostalgia. Do you get what I’m saying? People longed to have something back that never even existed in the first place! There was no such thing as the “traditional family” when the forces-that-be began touting it. The mindset of what made a family was set. What’s most important to realize is that the status quo – meaning, those “in charge” – decided what does (and thereby what does not) define the American family.

What makes up the traditional family?

Alright, let’s talk about it. We have the breadwinner, the husband and father who goes out and works hard to bring home the bacon, the MAN. Then we have the caretaker, the wife and mother who cooks and cleans, the WOMAN who always looks pretty for the MAN when he gets home from a hard day’s work. They get married, buy a cute home and have the CHILDREN, a boy and a girl who are smart, polite and love each other. There’s usually a PET playing in the background, too.

If you look at the ads tailored to brand the American Family they are also white, blonde with blue eyes, successful, in their late 20’s or early 30’s and quite beautiful.

Where’s the rest of society? Where are the non-whites? The poor? The gay? The disabled? It was during this time period the United States experienced the height of forced institutionalization of people with disabilities. If anybody from an outside country were to make an assumption on us based on the “traditional family” they would have a very incomplete picture. We are not all white; we are not all well-off; we are not all healthy; we are not all heterosexual; we’re definitely not all beautiful. So why do legislators insist on trying to fit everybody into this tiny little box?

Why “tradition” sucks

Here’s why: because huge groups of people are left out, that’s why. Just because the government (or any other non-governmental group) labeled something as correct, does it actually mean that it is? Yes, pushing everything into that box makes for a neat appearance and easy marketing. It’s just one box; no need to worry about different styles or sizes. The problem is, the person in charge gets to decide what everything in that box gets to do and feel and anybody who tries to get out of that box is seen as an outside agitator and is met with severe resistance and oftentimes, violence. Eugenics was a practiced "science" in the United States with a goal of creating a master human race - one that the traditional American family would fit into perfectly. 

Let’s go over a few things we would still be doing if we relied on tradition and those neat little boxes:

THE TRADITION	THE JUSTIFICATION OF THE TRADITION
Slavery - yep, if we kept on doing what we’ve always done just because that’s what’s always been done, whites would own blacks.	Blacks are not smart enough or capable of standing on their own; they’re so dirty that whites need their own entrances, water fountains and seating areas.
Suffrage – women wouldn’t be able to vote	Those crazy women and their irrational moods! How could they possibly form a thoughtful position on things as complicated as politics or the household budget?
Exploitation – kids would still be in our mines and factories	Their little bodies can fit in smaller spaces; their higher level of energy can produce more output; their level of intelligence merits less pay.
Institutionalization – anybody who was even slightly different would be locked up	Anybody with a physical disability cannot be a productive member of society; ADD & promiscuity would be enough to institutionalize someone today if we held on to traditional thought. Yes, really!
Interracial marriage – blacks were prohibited to marry whites	It would be the downfall to society as we know it if this was legalized. Those rapes committed by slave owners against their “herd” didn’t count though.

Marriage

So, marriage was defined by one man and one woman at some point in our history; does that mean that that’s the ONLY way it could be? I know, I know, some of you out there are thinking that marriage is supposed to be between a man and a woman because God made it so. “God made Adam and Eve, not Adam and Adam”. So catchy; so brilliant. Before all you religious zealots get your feathers in a ruffle and start commenting on God and how I will burn in hell, let me tell you this: I LOVE Jesus. He is my savior, my Lord. I went through my religious revolution I talk about here and I haven’t looked back since. But we are not here on this earth to judge others; only God holds that power. In Romans 12:16 we read: Consider everyone as equal, and don’t think that you’re better than anyone else. BOOM

So even if religion is the basis of your argument (which it almost always is), how is that a reason to put it into the LAWS of our country? I thought there was supposed to be a separation of church and state? One thing that really gets me is when Republicans want a smaller government, less intrusion, yet they want the law to control who can marry whom! (That’s not to say that Democrats haven’t traditionally been against same-sex marriage although the tides have been turning lately, haven’t they?)

You can’t have it both ways! Either the government CAN intrude into people’s private lives or it CAN’T; you can’t cherry pick in which area you want to stick your nose. I guess separation only applies when the status quo wants it to.

Which brings me to another point: Who the hell are you to tell anybody what they should do in their private lives? Listen, if Tina loves Shannon and they are happy together, how does that negatively impact MY life? Are they inciting a riot, spreading messages of hate or committing murder by being in a loving relationship? No. It seems to me that people who have a problem with same-sex relationships have some internal issues they are having difficulty sorting out.

And let me ask you this: what is the difference between “marriage” and “legal union”? Don’t they both give the same rights to the parties involved? It’s just another game of semantics played but when it comes down to it, you can call a rose a turd but it’s still a rose.

What do YOU think?

Accessible Playground For People With Disabilities

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

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

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

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

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

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

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

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

The Flu and You - 5 Tips On Staying Healthy

Flu season is upon us! OK, maybe I’m a little late with my announcement but it’s not too late to start thinking about it. According to the CDC (Center for Disease Control) the season can begin as early as October and end as late as May. There’s no way to tell when it will start, what viruses will be spreading or how long the epidemic will last. But we can take steps to curb and hopefully stop the virus from spreading within our own households.

Those of us who are immune-compromised or have children with disabilities are more susceptible to catching a virus so we must be extra cautious. The CDC did a study on the 2009 H1N1 flu outbreak and it was found that a higher number of kids with neurological conditions died from this epidemic than kids without. In fact, 68% of those deaths had an underlying medical condition; 64% of that group had a neurologic disorder! I am not trying to create a panic but I do think it’s extremely important to be educated and informed. Here are 5 tips on how you can keep your home as healthy as possible that you may or may not have heard before:

1. WASH YOUR HANDS!

Yes, the simplest things sometimes are the most important things. In my home, the main entrance is through the kitchen and as soon as we walk in the door, we wash our hands. No matter where we’ve just come from – the grocery store, a relative’s home, school, work – first we wash our hands. Anybody who comes over, I ask the same from them or offer antiseptic hand sanitizer that I keep right next to the soap. I’ve had a couple people say, “Oh, I washed my hands just before I left my house”. Really? That’s great. And after you washed them you touched your door knobs, car keys, car door & interior, and God knows what else...So yeah, please either wash or disinfect them now that you’ve made through my threshold, thanks!

2. USE YOUR ELBOW!

Well, actually the inside of your elbow a.k.a. the crook of your arm.  When you cough or sneeze, covering your mouth and nose with your hand is fine if you’re going to wash it right away but chances are you’re not. What you’re probably going to do is touch your phone, computer mouse, remote, drawer handle, door knob or shake someone’s hand. Then guess what? You’ve passed your germs on to someone else. I’ve never seen anybody open a door or change the channel with the bend in their arm. If you do, please take a picture and share that; I’d love to see it.

3. WIPE! WIPE! WIPE!

There have been studies that show remote controls are the germiest items in hotel rooms. I’m willing to bet your remote controls at home have never been cleaned. Neither have your cell phones, home phones or computer mouse. I take disinfectant wipes (Lysol makes them but there are other no frills brands that have the same properties and work just as well) and clean everything. I just go room to room and wipe down the things that we touch the most throughout the day. The electronic items I mentioned above; light switches; door knobs; cabinet handles; drawer pulls; computer key boards; video game controls. I’ve gotten into such a frenzy that before I realized it, the cats had been sanitized, too. They hated it but they did look pretty funny with their fur all stuck together like that. Ah, good times.

4. QUARANTINE!

After we found out my son doesn’t have half of his immune system I bought face masks so that if anybody in our immediate family was sick, we could protect him from our germs. We try to stay away from the others for the first couple of days until the antibiotics kick in. And if someone from the outside world is sick, they get locked out! Even the slightest hint of a possible cold is enough to block access to our home. Sorry, we love you, but ya gots to go!

5. VACCINATE!

This is controversial. I know there are many people who feel this will only get you sick, whether it be with the flu, Autism or other neurological diseases. Let me just give you the facts, as per the CDC, then you can make up your own mind.

Who should be vaccinated? Everyone, but especially people at high risk like children over 6 months; those with certain medical conditions that make their immune systems weaker like those with asthma, diabetes and chronic lung disease; pregnant women; and people over 65. Also, those of us who care for people who fall into this high risk category should be vaccinated.

When should we vaccinate? As soon as the vaccines become available so that a flu epidemic doesn’t have a chance to grow. It takes about two weeks for the vaccine to kick in so waiting until the virus is in full effect to get the vaccine is not ideal. You should get it when it becomes available so you’re protected at the right time.

Where do I get the vaccine? If you are being followed by a regular physician then that is where you should go. If you don’t have a doctor you can go to http://flushot.healthmap.org/ to find a location by you. There are also links on the main page to information on the different types of vaccines available.

Make sure that whoever is giving you the vaccine knows your medical history. For instance, the nasal mist vaccine is not safe for the groups I mentioned above. People with immune deficiencies probably wouldn’t be good candidates for any type of vaccine, either. I’m not doctor so please, PLEASE speak to a medical professional about all your medical history before making your final decision. You can find more about the flu and vaccines http://www.cdc.gov/flu/.

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!

**********************************************

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.

********************************************** 

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. 

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!

Games Day - Fun With Adapted Sports

Today was Games day at Mitchell Field in Nassau County and boy what a gorgeous day it was! There was no humidity, the sun was shining and a light breeze kept us happy while we waited our turn at each event. My daughter's favorite event (which is actually not an event but a fun activity to do in between events) is the swing. There is a huge swing that you can roll a wheelchair right onto and people who can't sit on a typical swing can still enjoy the twisting and turning of a crazy ride. Therapeutically speaking, it's referred to as vestibular motion. "Entertaining-ly" speaking, it's just plain FUN!

I have to say that I truly enjoy going with her. Not only because she gets to do fun things like ring toss, precision throw and the 40m dash (her favorite by far) but I get to feel comfortable. I'm not so worried about taking too long to do something, like giving her lunch, or being concerned about her wheelchair getting stuck or in the way of someone. Everyone else there is just like me. I fit in. I'm surrounded by people who know exactly how I feel about certain things without having to say it. Yeah, today is supposed to be about her but as it turns out, it's about me too.

Today was a great day!

My Son-shine - A journey into the world of Primary Immunodeficiency Diseases

Today it is hitting me that I am part of another community I never asked to be in. My beautiful son-shine looks absolutely perfect but he is not. Not medically, anyway. He has Bruton's which is a Primary Immunodeficiency Disease (PIDD). I still have to look that up to make sure I’m writing it correctly. As of right now, half of his immune system is missing. His B-cells are pretty much non-existent which means his body does not produce antigens that fight off viruses and bacteria. What would be a slight cold to you and me could mean pneumonia to him.

It all started with feeding issues. He would be hungry but then would cry, arch, turn away from the bottle when I would try to feed him. There was a lot of spitting up & vomiting and a lot of feedings because he would take in so little each time that he would be hungry very soon. At first glance, the GI thought my 3 month old was suffering from reflux but when a change to his formula showed no improvement and there was a serious weight loss GI ordered us to the ER to make sure there were no obstructions or other internal issues. The ER doc noticed his breathing was kind of fast and x-rays were kind of cloudy but his lungs sounded so clear that pneumonia was not a thought in anybody’s head. Well, 2 ER visits, a 5-day stay in NICU, 2 more ER visits, another hospitalization that lasted a little over 3 weeks and yet another ER visit later we finally got the confirmed diagnosis of Bruton’s; or Agammaglobulinemia; or X-linked Ag; or BTK. They are all the same and half of them are not even recognized by my spell check. So here I am, a member of the primary immune deficiency community. Oh, Holland, why do you hunt me down while Italy evades me? 

So now I have to be my son’s nurse along with my daughter's. Every week he needs two infusions of a medicine that contains the antigens his body does not naturally produce. Yes, I have to stick him with a needle. Every week.
 

This will be a life-long issue for him. There is no cure as of yet.

2 kids. 2 chronic conditions. 

One Reason Why Families With Disabilities Become Hermits

Sometimes I feel like a hermit.

Do you know how many family gatherings, birthday parties and dinner invitations I have missed because I just could not get The Girl into the home where the event was taking place? In some cases, even if I could get her IN, once there it would be such a tight space that having her in her wheelchair would be impossible. Or I'd have to park us in one corner and she wouldn't be able to move from that spot the entire time we were at that "party". Sounds fun. In other cases, the event was held outdoors but we still could not go because the terrain would not allow for the pushing of a wheelchair (like sand on a beach or rocks and pebbles in a grassy park). So I opt to stay home. Well, “opt” is not really the correct word here because I really didn’t have a choice, did I?

Just going to my dad’s house is a sweaty endeavor. The house is not crowded with people and even though it’s a smallish 3-bedroom home, there is space enough to maneuver a wheelchair within the dining/living room area which is where the front door opens directly into. So what’s the problem? Why so sweaty? Well, there are 4 short steps leading up to said front door. This means that The Girl’s power chair can’t be used because it is impossible to lift so we have to bring her manual chair (which is not as comfortable for her to be sitting in for extended periods of time). This chair is by no means light but at least it is collapsible so I can fit it in my trunk and all the pieces come apart so it lays flat. But she can’t just be wheeled into the house (4 steps, remember?)

First, the chair has to be lifted out of the trunk and assembled (opening the frame, attaching the seat cushion, backrest and footplates which could take up to about 5 minutes or so).

Then The Girl has to be lifted out of the seat of the car (try lifting over 90 pounds of wiggly dead weight out of the tight area inside an open car door, swiveling around 180 degrees and placing it on a seat that is 2 steps away without dropping it or injuring it).

Then she must be belted into the seat and leg plates and rolled across the yard that is full of roots, branches and an occasional small unseen hole (my dad takes care of his yard but it is still outdoors) to the steps of the front door. Nature is beautiful but is not conducive to rolling a wheelchair over it so you need some serious arm and leg strength!

Then she has to be bounced up the four steps, backwards, lurching up a step at a time and squeezed through the storm door and the front door, with 2 people helping with this endeavor, hoping all the while that the chair does not roll back down the steps or tip sideways and cause injury to my precious. There is option number 2, where she is physically carried across the yard, up the steps and into the house and the chair is wheeled in separately. But, again, we are talking about a wriggly, 90+ pound, dead-weight beauty. All in all, just this part of GETTING INTO a non-accessible location takes about 15 minutes of physical labor if things run smoothly. (There have been countless times where the backrest would not slide into its 4 receivers on the frame or the lap belt was stuck between the frame and the seat cushion after she was already sitting on the chair so the whole process needed to be restarted from the beginning…) When we leave it’s all the same process again, just in reverse order.

Phew! I’m exhausted just thinking about all this. And that is why there have been many times where I have just declined an invitation. Just thinking about it gets my anxiety levels up. I haven’t even touched upon what happens when we FINALLY get inside the home…Then there are those times we get somewhere only to find that no matter what we do it's impossible to actually get inside.


Easier to stay home sometimes. If you had to do a 15-minute full-body circuit workout every time you wanted to go somewhere, right before you got into the "somewhere" you wanted to be, would it be worth it?

Stressful Small Talk

Typically, I'm a very private person (so what the heck am I doing here??). I don't talk about my personal stuff with anyone. I was just watching the show "Undercover Boss" and I am amazed at how much people will share about themselves with strangers. OK, they were being filmed so maybe they were going the extra mile for the glittery lights of Hollywood but I hear people all the time on line at the supermarket or in the lobby of The Girl's school, just sharing away...about their husbands/kids/sister-in-law's neighbor's dog's previous owner's fiance...blah, blah, blah.. Me? Here's a typical "small talk" conversation I will have with an acquaintance: ************************************** Them: Hi! How are you? How are the kids? Me:    Oh, we're great. All doing good. You? Them: Not too bad...I had such a migraine last night and my husband is so tired of me complaining about it, but I keep telling him, if he would just.... *************************************** You get the picture.  It is just so awkward to decide how much to talk about without sounding like I’m either a Debbie-downer or just a frigid b**.  Watch: *************************************** Them: Oh, you have a 15 y.o. too? That must be great, having a built-in babysitter at home! Me:    Well, not really. My daughter is actually disabled so she really can’t do that. (way to bring the mood down, rockstar) Them: (with a look of pity on their face) Ohh, I’m sorry to hear that.  *************************************** Then the awkward silence begins and I have to try to recover the conversation so they don’t feel bad about what I just shared with Them. Or it could go this way: *************************************** Them: Oh, you have a 14 y.o. too? That must be great, having a built-in babysitter at home! Me:     I smile and nod my head and look away (frigid b**) to try to think of how to change the topic before They ask too many questions and I have to either actually tell them how it really is or spin an elaborate lie about how she handles her little brother so carefully and Even Knows How To Feed Him By Spoon!...all with a great big kool-aid grin on my face while crumbling inside over the never-to-be fantasy. I have lots of those. Here's one. *************************************** I know people will say, "You don't have to say anything. It's none of their business if you don’t want it to be and if they have a problem with it, too bad.” Yeah, that is a fact. But I wish I didn't have to think so hard about how to respond to something so unimportant. Am I making things more complicated than they need to be?