New York Gets Inspired - Work Incentive For People With Disabilities Passes the Senate

GOOD JOB NEW YORK!

Inspire NY is a tax incentive spearheaded by Senator David Carlucci (D) that encourages businesses to hire people with developmental disabilities. It just passed the Senate! This legislation helps thousands of New Yorkers gain a sense of belonging and inclusion in their own community. Businesses will receive up to $5,000 for hiring each full-time employee and up to $2,500 for hiring each part-time employee.

Follow Senator Carlucci on Facebook at https://www.facebook.com/davecarlucci

Disability Awareness Month - 5 Influential People of the Civil Rights Movement For People With Disabilities

For Disability Awareness Month I’ve put together a list of five influential people of the disability rights movement in the United States. This is just a short list of some people who have made a tremendous impact on how people with disabilities are able to live today.

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Hellen Keller

 1. Hellen Keller – Born in 1880, Helen was struck by a mysterious illness called “brain fever” by a family physician at 18 months and became deaf, blind and mute. At the age of 7, her parents found a young teacher who would teach Helen how to communicate and they would become life-long friends. Helen graduated from Cambridge School for Young Ladies and went on to become a well-known speaker doing lectures and working on behalf of people with disabilities. She testified before Congress, advocating for an improvement in the welfare of the blind. She co-founded Helen Keller International to combat the causes and consequences of blindness and malnutrition. In 1920, she helped found the American Civil Liberties Union (ACLU). Helen tackled many social issues including women’s suffrage, pacifism and birth control. She traveled to 35 countries on five continents, including a five month trip across Asia at the age of 75 in order to improve the lives of people with disabilities. She died in her sleep in 1968, just a few weeks before her 88^th birthday.

Gini Laurie

2. Virginia “Gini” Grace Wilson Laurie – She is considered one of the “grandmothers” of the independent living movement. A year before her birth in 1913, two of her sisters died from poliomyelitis and her brother was left severely disabled. As an adult, she volunteered with the Red Cross in the Cleveland Toomey Pavilion rehab center during the 1949 polio epidemic. In 1958, she took the unpaid job of editor of the Toomeyville Gazette, a newsletter put together by patients who recovered at the rehab center after contracting polio. The Gazette published articles on legislation, activism and what would become known as the independent living movement. In 1970, Gini wrote an article in the newly-named Rehabilitation Gazette where she stated plainly that for people with disabilities, the most important thing “is the right to freedom of choice to live as normal a life as possible within the community…Segregation is unnormal.” In 1977, she wrote Housing and Home Services for the Disabled: Guidelines and Experiences in Independent Living”. It pointed to the fact that it is more cost-effective for people with disabilities to live in their community than being put into institutions or nursing homes, an important point still being driven in the disability movement today. She died in 1989 of cancer.

Ed Roberts

3. Ed Roberts – After contracting polio at age 14 and living in the hospital for two years, Ed was finally able to move back home. But things were very different. Because of the polio, he was only able to move two fingers and slept in an iron lung. His struggle against discrimination began immediately when school administrators did not allow him to attend school with his classmates. They felt it was best to have teachers instruct him privately at home. The family fought back and they won him the right to attend school with his classmates. After graduating from a junior college, he had to go through another battle in order to be allowed to attend the University of California in Berkeley. He eventually won this fight as well and went on to study Political Science. Because of Ed, more disabled students were allowed to attend Berkeley and they eventually formed a disabled student organization on campus. Their focus was to make the university more accessible and provide trainings on daily support techniques. In 1972, Ed helped the group form the first Center for Independent Living which was considered radical at the time because it was run by people with disabilities rather than medical professionals. He became the first person to serve as the Director of California’s Office of Vocational Rehabilitation. In 1981, he and Judy Heumann and Joan Leon started the World Institute on Disability (WID) which studies legal rights issues for people with disabilities around the world. Often referred to as “the father of the disability rights movement”, he was president of WID until his death in 1995.

Justin Dart

4. Justin Dart – At the age of 18, Justin contracted polio which left him unable to walk. He came from a wealthy family in Chicago and in 1967 he and his wife devoted their lives to helping people with disabilities. On his own dime, they travelled the across the United States in the early 1980’s which was quite an undertaking because many places were not wheelchair accessible. Universal design was just beginning to be implemented in larger cities but in smaller ones, it was practically unheard of.  What was learned through conversations during this tour was the basis for a policy that called for national rights for people with disabilities. It would eventually become the Americans with Disabilities Act (ADA) of 1990. Because of the national dialogue that took place during this time and the subsequent passing of the ADA, Justin Dart is considered to be “the godfather” of the ADA. In 1995, he founded the American Association of People with Disabilities (AAPD) along with others. At the age of 71, he died in 2002 from congestive heart failure related to complications of post-polio syndrome.

Wade Blank

5. Wade Blank – emulating the great Dr. King, Wade began a movement in the 1970’s within the disability community in Denver, Colorado that would give rise to ADAPT, a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action. A former minister, he saw the sad living conditions of individuals with severe disabilities in nursing homes and took it upon himself to make changes. He not only moved people from institutions into independent living centers but these very same people became co-protestors in his fight against the discrimination built into the public transportation system. They waged the first sit-in of their kind and surrounded a bus with their wheelchairs in Denver. The group quickly expanded to other cities around the US, holding demonstrations fighting for accessibility in public bus systems. His group’s national recognition paid off as accessible public transportation was included in The Americans with Disabilities Act (ADA), a landmark law passed in 1990. He continued to be a leader in the civil rights movement of people with disabilities until his death in 1993.

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Without these role models and others like them, people with disabilities would not have the right to a free and public education, public transportation and barrier-free public places, among other civil rights. Although there is still much work to be done, it is uncontestable that the foundation laid down by these pioneers sparked a movement that is still growing today.

Can you think of any others who have made a major impact on the lives of people with disabilities?

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.

Forced Sterilization of the Disabled

EUGENICS

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

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

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

CARRIE BUCK 

Carrie's wedding photo after being deinstitutionalized

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

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

END TO FORCED STERILIZATION

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



Citations:

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

2010. <http://www.eugenicsarchive.org/html/eugenics/essay8text.html>.


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

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

<http://bioethics.georgetown.edu/publications/scopenotes/sn28.htm>.


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

2009-06-23-eugenics-carrie-buck_N.htm>.


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

CA: Sage Publications, 2006. Print.

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!

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. 

Keeping My JOY When Family Life is Difficult

I have been thinking a lot about joy lately. JOY. That’s not a word used very often today. We talk about being happy or good. “Yeah, I’m good.” But joyous? Doesn’t the word ‘joyous’ evoke something different inside you? When I think about how it is to be ‘joyous’ I feel like it’s something I really REALLY want; like it’s more than just being happy or content or fulfilled. Like it’s all three of those things plus more.

My emotions can be so up and down. One week, I feel empowered, optimistic, strong. I conquer the world, take care of the kids - one in a high chair and helpless, the other in a wheelchair and helpless - feeding them breakfast, lunch & dinner; entertaining them; developing lesson plans for home-schooling while on summer break; giving infusions and administering medications; scheduling all the doctor appointments for all the various doctors they each have. I cook; do the laundry; go to the grocery store; I try to be a good wife, a good friend, a good daughter.

Then, in a matter of a moment all of that rolls down the drain like dirty bath water and I am overwhelmed, feeble, exhausted. I can’t fathom getting organized enough to make myself coffee let alone getting breakfast going for the two of them. And then, when I have the both of them crying and needing my attention…? It’s all too easy to get sucked into the depressing role of the harried mom who hasn’t had a chance to shower, one needy baby on the hip, the other wanting to eat (but mom needs both hands free to feed her), the kitchen sink full of dishes and no food prepared for dinner for when hubby gets home from a long day’s work.  Just re-reading that is exasperating.

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In 2007, I went through my “religious revolution”. I grew up catholic, went to catholic school K-8^th grade, went to church, had my baptism, communion & confirmation like a good girl. After middle school we pretty much stopped going to church except for holidays but we were still believers, Pope-sters. But then, my daughter happened. A very uneventful pregnancy turned into a Nightmare on Hospital Road (the hospital she was born at is actually on such named road!). My just-barely-under-the-radar anger I had developed starting around the age of 15 or so exploded and I was on the attack against anyone, including God Himself. Oh, I cursed Him; hated Him. How could He let this happen?? What did I do?? What did SHE do??? Why, why, WHY?!? Long story short, I was very hateful and bitter and most of all depressed. A very deep and very real depression settled over me. It came in fast and furious, whooshing dust and dirt up around me in filthy clouds and like a betrothed lover, never left my side. It engulfed me. I walked this earth in the middle of this foul bubble; everyone could see me and I could see everyone else but I always had this grimy lens to look through. I always felt out of place. I would hear people laughing and see them having fun but I felt like I was juu- u- u-ust out of reach of having that for myself. This bubble would not let me out!

Then I finally opened the door to Jesus. He had been knocking and knocking, patiently waiting for me. And I felt brand new. Like a whole different person, truly. I wonder still how in the world did I survive all those years with so much pain in my heart. Truth be told, I almost didn’t. There was a close call in the middle there. But here I am still.

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And I want to be joyous! I want to figure out a way to feel that joy as much as possible. During those “Why ME?!?” moments that can sometimes stretch into hours and days, I want to know how to find that joy. In John 16:22 we read that no one (or no circumstance) can take our joy from us. In other words, my life doesn’t have to work out the way I planned it to in order for me to be happy. Having two children with life-long chronic medical issues is upsetting, and there will be times that I will feel overwhelmed, but do I have to let it take my JOY from me? Can I let it go?

That’s a huge endeavor I’m asking of myself: let it go. Submit to God, bring my worries and anxiety to His altar and leave it there for Him to take. I think writing this is a beginning to me being able to do that. I work it out in my head and put it down on the proverbial paper. I also get some feedback from some of you and it’s a beginning.

So thanks for listening.

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!