Americans with Disabilities Act (ADA)

On July 26, 2015, we will celebrate the 25th anniversary of the passage of the Americans with Disabilities Act (ADA) signed into law by President George H.W. Bush in 1990. It is one of the most comprehensive pieces of legislation for the disability community. It prohibits discrimination on the basis of disability in employment, public services provided by state and local governments, public services operated by private entities, transportation, commuter authorities, or telecommunications.

An excerpt from the National Council on Disability (NCD) report:

Living in the community with family and friends, working at a typical job in a regular business, and participating in community affairs is a right of citizenship, not a privilege for individuals with disabilities, as for all Americans. This right was confirmed with the passage of the Americans with Disabilities Act in 1990, affirmed with the 1999 Supreme Court’s Olmstead decision, and repeatedly reaffirmed in the years since that landmark decision. 

Disability rights are a CIVIL RIGHTS issue. Accessibility to public places & social programs, equality in employment practices and education – these are all federally protected rights for every person in the United States, including those with disabilities. We must stop viewing individuals who are disabled as subhuman or charity cases. Having ramps and elevators installed at rec centers; having ample aisle space at department stores and restaurants; providing larger stalls with handrails in public bathrooms – these are not things that people with disabilities should feel grateful for. It is not a privilege to have appropriate supports or removals of barriers. It is the LAW.

Forward RISE is a NYS nonprofit committed to the real inclusion of people with disabilities through knowledge-sharing workshops and inclusive social experiences.

http://forwardrise.org/

Sheltered Workshops: A Thing of the Past in Vermont

Workshops - Yay or Nay?

There is a great debate taking place on whether or not sheltered workshops should still be an option for people with disabilities who are out of school. Read my pros and cons on workshops here. One of the main arguments people have against closing down workshops is the fear that the individuals working there will have no place to go since businesses don’t tend to hire people with disabilities. The numbers seem to back that up since the unemployment rate of people with disabilities is twice that of people without disabilities, according to the Department of Labor (as of August 2014). You can find more informationon that here.

However, the state of Vermont is an example of contradiction to this argument. According to this article :

“The sheltered workshops that are still prevalent across much of the country were shut down in Vermont more than a decade ago. And now, the employment rate of people with developmental disabilities in the New England state is twice the national average.” (emphasis added)

Inclusion in play and work

How did Vermont do it?

The University of Vermont received a grant to build programs for integrated employment in the 1980’s. They worked with state disability agencies and its success over time was enough for Vermont to realize that sheltered workshops were not how the state wanted their citizens with disabilities to be treated. Workshops were phased out over a 4-year period: new entries into workshops were no longer allowed and their funding was incrementally cut.

Of course there were fears from the families who would be directly affected by this and rightly so. As parents, we want our children to be safe and secure, accepted by peers and part of something bigger than themselves. Could these desires be realized if workers with disabilities don’t have contact with others who are also disabled? Is there a job out there they could actually do and feel good about doing? Would society in general accept them?

It turns out, the answer is yes! In Vermont, about 80% of the people who used to be in workshops found employment in an integrated setting. The rest found other community-based services. According to the article, “In fiscal year 2013, the average wage for supported employees was $9.26, more than 50 cents above the state’s minimum wage and $2 above the federal minimum wage.” How incredible is that?!

And Vermont shows no signs of slowing down. It has increased its numbers of employed disabled individuals yearly. To continue their success rate, ongoing support is available in each county and doesn’t fade over time, which is common in most other states. There are also education programs with businesses that ease fears and answers questions for potential emplo

yers.

Looking to the future

Some argue that the reason Vermont was able to be so successful is because it’s a small state. But isn’t that a cop out? As a parent to a teenager whose CP severely impacts her, I worry about her future all the time. What will she do when she ages out of school? Today, I can’t picture a job where she can be independent because of the extremity of her physical disability but who knows where we’ll be in terms of technology and employability six years from now? My greatest hope is that all states work towards achieving the successful model Vermont has realized so that our community has as many options as it can.

Let’s not continue to set the bar so low for our people!

Wells Fargo seems to have humans with hearts running it!

UPDATE!
Wells Fargo has agreed to cancel her eviction and is in talks with her attorney. There have been numerous calls and letter of support as well as donations to help Sandra. Her attorney is setting up a fund for her. If you care to help, you can call 203-324-7744 or email Sandra Weiler at mrsweiler@aol.com.

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So far, cerebral palsy and cancer hasn't stopped Sandra Weiler. Will Wells Fargo follow suit? Could it be that the banking industry is doing the right thing? Taking what seems to be a "human-centered" approach rather than a "dollar-centered" approach, Wells Fargo has agreed to review a particular case and put their decided eviction of Sandra Weiler, a woman with cerebral palsy, on hold.

At first glance, automatic assumptions would run rampant through many people's minds about how this woman ended up getting an eviction notice. Things like "government assistance" and "moocher" might occur to some people (ok, LOTS of people) reading this.

But before you make up your mind, let me tell you that the woman you see in the still of this video has her PhD, has owned a daycare and is a special education teacher who currently teaches at a university in Connecticut. She was also fighting cancer and has recently lost her medical coverage.

Yes, I know banks are in it for the money but aren’t there times where a person could actually just be going through a rough patch and be given an extension? I’m so glad Sandra Weiler was given an extension and I hope that Wells Fargo will allow her to stay in her accessible home which she has customized to her particular needs to give her the independence every human being deserves!

Top 5 Visitable Cities - Places Where People With Disabilities Have Great Accessibility

Vacations are enjoyed by millions of people all over the world but some people with disabilities can find planning a vacation a bit daunting because of disability issues. Some may even think it’s impossible. I say, with proper planning, you can have a great vacation to remember. Here is a list of the top five most accessible places to visit in the world.

Berlin, Germany

1. Berlin, Germany

It was awarded the “Access City of the Year” in December 2012 by the European Commission due to its aggressive and forward-thinking plan of creating a fully accessible public transportation system. Its plan also includes broadening sidewalks and using tactile guidance systems at road crossings. By the year 2020, the government plans on Berlin being 100% accessible. A large majority of museums in Berlin are already accessible as are most of the more well-known hotel chains but be sure to ask when making reservations what accessible features are currently available. You can search for places to visit at Visit Berlin for People with Disabilities. 

Vancouver, British Columbia

 2. Vancouver, British Columbia, Canada

One of the most diverse cities in the world, Vancouver offers visitors a wide variety of cultural foods and experiences. With its great public transportation system – buses are equipped with wheelchair ramps and the Sky Train and SeaBus are also accessible – visitors have a variety of choices when deciding how to get to where they’re going. Vancouver International Airport is one of the world’s most accessible airports. Some barrier-free features include amplified handsets at service counters, low-mounted information monitors, services for the deaf and accessible washrooms. Travelers can rent vehicles with hand-controls or use the Airporter shuttle bus service to get to their hotels. For more information on where to go and what to do, go to Accessible Vancouver.

San Diego, California, United States

3. San Diego, California

When you think “California” you should also think “beach”! With its mild climate you can enjoy 70 miles of beach when visiting this city year-round. At at least fifteen San Diego beaches, beach wheelchairs are available for people with disabilities at no charge. Some even offer motorized chairs. To find a list of beaches with phone numbers check out CaliforniaCoastal Commission. You can also take accessible sightseeing tours via bus, boat or old-fashioned trolley. Go to SanDiego.org to plan your trip. 

Denmark

4. Denmark

Yes, the whole country. While all Scandinavian countries are very disability-friendly, Denmark stands out because of its “Accessibility For All” program. This is a tourism labeling system for hotels, attractions, restaurants and other places you might want to visit while there. You can search for places and other things accessible using http://www.godadgang.dk/ and narrowing it down by city, type of place, disability and more. You can also find more tourism information at VisitDenmark.com. 

London, England

5. London, England

England might call to mind old tradition but that doesn’t mean it hasn’t modernized its accommodations for people with disabilities. The subway system, called the Tube, has some stops that are not wheelchair accessible so if you’re planning on traveling that way be sure to research ahead of time to find the stops that are accessible. However, the large majority of their buses are accessible and their taxis are required by law to be accessible. You can find accessibility information at Transport For London. Many of London’s most popular sight-seeing stops are free or offer a discount for people with disabilities. There are some places that even allow one care giver in at no charge.

Special Mention:

Morgan’s Wonderland in San Antonio, Texas – A recreational park that provides a beautiful environment free of economic barriers that all individuals, regardless of disability can enjoy. It boasts many attractions such as a sensory village, picnic area, playground and sandpit and a carousel that is accessible to all including wheelchair users. Tickets can be purchased online and are very reasonably priced. Individuals with disabilities and children under 2 get in for free. Visit their site at Morgan’s Wonderland.

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So now that you have some ideas of where to go, let’s go over a few tips on how to travel with a disability:

1.  Plan ahead! Give yourself as much time as possible to research where you are going. Here are some questions you should ask:

·         Is the destination airport accessible? Who can help you find the right accommodations?

·         Does the hotel have a no-step entrance; rooms on the first floor; wide hallways/doorways; grab-bars or roll-in showers? Do they have other accommodations such as interpreters or amplified handsets?

·         Is the local area disability-friendly? How will you be getting to local attractions and sites?

2. Bring a letter from you doctor - Preferably on a letterhead, a doctor’s note explaining your condition and necessary treatments could help you if you become ill or injured. Make sure the doctor’s contact information is on the letter.

3. Be specific - Not everybody will know what your particular disability entails or requires. When makin queries be very clear about what your needs are.

4. Know about emergency services - In the US, 911 is the universal emergency phone number. What about in other countries? Be sure to know what to do if you have an emergency.

Remember, being prepared for the worst allows you to enjoy your time better. Here are some travel sites geared toward helping people with disabilities:

Mobility-Advisor.com 

Society for Accessible Travel and Hospitality 

Enable Mob Travel Resources 

Disability Travel and Recreation Resources 

Happy vacationing!

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

People With Disabilities Have A RIGHT To Make Choices

What's For Lunch?

There may be some people who wonder how a person with disabilities can decide important things such as which doctor or therapist to see or which facility to go to. I wonder how anybody can take away another’s right to make such decisions! The institutionalization that began over a century ago in the United States is a direct cause of the stigmatization of people with disabilities. The multi-generational feeling has been that this population is incapable of making minor decisions, such as what to eat for lunch, let alone important life decisions as where to live and which doctor to see. Let’s not even get into the social aspects of life like love, sex and friendships!

"We the People" Includes People With Disabilities!

What A Community IS

The Department of Health and Human Services has completed the final rule on what home and community-based services are under the Affordable Care Act. Why is this so important? Because now a person with disabilities cannot be forced to live in an institution or nursing care facility and made to call it “home”. This statute states “that home and community-based settings do not include nursing facilities, institutions for mental diseases, intermediate care facilities…or any other locations that have the qualities of an institutional setting”. There were reports of “homes” being built on the grounds of former mental institutions where the patients inmates were herded under the guise of “community settings”.

Here are some of the (what I think should be obvious) stipulations to the Final Rule of the Home and Community-Based Services plan: 

* Settings must be integrated fully into the community – you know, like how your home, job, doctor, shopping mall, etc. are 

* Individuals must have access to the community. This sounds like a no-brainer to me. It’s still shocks me that obvious rights like these need to be put down on paper in order to be understood 

* Individuals have a right to privacy in their homes. We needed to write this out – AGAIN – in a new federal statute. I guess the Constitution and Bill of Rights don’t apply to people with disabilities 

* Person-centered care plans are required which means that the individual gets to choose where they go, who they see and what they do, themselves, rather than having a doctor or caregiver decide what is best for them. Rule of thumb: A care plan is made with the individual not for the individual.

There is still a long way to go but this is a good step towards equality in the social and civil rights of people living with disabilities.

Accessibilty Arcade

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

Why is this so important? 

Glad you asked! 

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

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

So play on, playas! 

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

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

Cops beat man with Down Syndrome

Unconstitutional Use of Force

I recently posted on Google+ and Facebook about how the US and the city of Portland, Oregon have have jointly filed in federal court a proposed court enforceable settlement agreement to remedy constitutional claims that the Portland Police Bureau (PPB) engages in a pattern or practice of unconstitutional uses of force in response to “low-level offenses” against persons with actual or perceived mental illness.

I guess it’s time to do the same in Vista, CA. A deputy pepper-sprayed, beat with a baton and detained a man (after throwing him to the ground with the assistance of another deputy who showed up) in handcuffs who has Down Syndrome. There were witnesses in the area shouting that he had Down Syndrome but that didn’t slow the cops down from beating him and leaving many contusions, scrapes and bruises on him. He was transported to the hospital (still in cuffs I might add) and allowed to go home with his family. The following day, police officers showed up at the family’s place of business and informed them they would be dropping the citation they had against him (they claimed he was acting “suspicious”; he was walking the 5 minute walk to work) and offered them a turkey with stuffing for their Christmas meal as an apology. Yep. A turkey dinner. 

Now, I am not claiming that if a person is being aggressive or a danger to others or themselves, they should not be handcuffed or sprayed just because they have down syndrome or any other form of developmental disability. And again I say, I'm not anti-cop but there is definitely a culture of beat 'em, taze 'em. The fact that the U.S., not a local town or county, has filed against a particular city's police bureau (Portland, OR) indicates there have been egregious violent acts against a vulnerable segment of our population: the mentally ill. This story is just one account that made it into mainstream media. And hardly even that – I saw this only on CNN.


Some questions to ponder:

How about some education for those who are supposed to protect us so that those among us don't need protection from them?
How about instead of locking people up and throwing away the key, we get them some medical support? 

Would you think that would be a better idea if you knew it decreases recidivism? 

How about if it reduced the level of violence of the repeat offenders?

Read about how changing our current prison system could possibly change our society as a whole here.

What A Learning Disorder Is

WHAT’S A LEARNING DISORDER?

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

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

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

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

WHAT A LEARNING DISORDER IS NOT

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

YOU GIVE IT A TRY

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

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

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

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

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

Preschool signs and symptoms of learning disabilities

§  Problems pronouncing words

§  Trouble finding the right word

§  Difficulty rhyming

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

§  Difficulty following directions or learning routines

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

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

Grades K-4 signs and symptoms of learning disabilities

§  Trouble learning the connection between letters and sounds

§  Unable to blend sounds to make words

§  Confuses basic words when reading

§  Consistently misspells words and makes frequent reading errors

§  Trouble learning basic math concepts

§  Difficulty telling time and remembering sequences

§  Slow to learn new skills

Grades 5-8 signs and symptoms of learning disabilities

§  Difficulty with reading comprehension or math skills

§  Trouble with open-ended test questions and word problems

§  Dislikes reading and writing; avoids reading aloud

§  Spells the same word differently in a single document

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

§  Trouble following classroom discussions and expressing thoughts aloud

§  Poor handwriting

GET HELP

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

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??

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

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

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



Innocent yet mocking

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

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

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

A Little Girl's Thoughts & Dreams

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

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

Photo is from 2003

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

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

A Little 411 On The Girl - Living With Cerebral Palsy

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

Wings are in "landing mode"

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

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

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



My son's Medical Log Book

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

 

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

Enjoy your trip to Staples!

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!