Say what? Who is Zach Anner?

We all know who Oprah is, but do we know who the winner will be for her search for the next TV star contest? It just might be a young man (who has my vote, by the way) by the name of Zach Anner. He has already accumulated over 2 million votes and likely in the running….but could he win?
Who is he you ask? If you haven’t seen his You-Tube video “Zach’s Oprah Audition” be sure to watch it. He describes himself as someone with a lot to say who doesn’t know where he’d fit in because he has cerebral palsy….what he calls the “sexiest of palsies”. According to Zach, he inspires to have a travel show “for people who never thought they could travel or go on an adventure”. His travel show, he says, would be “how to have the perfect vacation” and something to prove to people that “no obstacle is too big…no mountain too high…no volcano too hot….and no Atlantis too underwater or fictional”.

Is he referring to travel, and adventure, for those with disabilities? I think so. He makes his point loud and clear: “So, if you’re ready America, let’s go on an adventure together.” He says he knows his body is a “wonderland” and doesn’t know why anyone would be interested in him…but I think he is clearly mistaken. We should be interested in him because he is honest, candid, and funny…..while hitting home with his message that even someone with cerebral palsy can have a fulfilling life.

I was touched by two of his many (funny) videos. “Zach Anner Rolls over Austin: Part 1” is especially funny when he exclaims that finds the wheelchair ramp and then hugs the “accessible” sign only to find that the doors to the capitol don’t open. “Zach Anner Crawlathon: Part 1, The Tortoise and the Chair” was quite touching in that he wants to know how fast he can crawl a one mile track. He is inspired by other (professional) athletes and says that so many times “people assume what you can’t do” and its clear he wants to prove them wrong. He leans forward out of his chair on all fours on the track, knee pads in place and soon stops to change into long “warrior” pants. He continues to crawl; slowly and painfully as evidenced by his torn pants and bloody knees. Finally, he calls it a day after the first ¼ mile and says his quest will be continued. In another video he climbs Mount Bonnell in Austin and says “it is completely handicapped accessible…..if you have 2 guys who can carry you….in 100 degree heat”….and again, making his point loud and clear.

If you haven’t seen, or heard Zach, take a moment to check him out. Who knows he just might win Oprah’s deal and become host of his own TV show. Wouldn’t that be a novel idea and certainly a delight to all of us who live in the world of those with disabilities and special needs?

As Zach’s mom says, “When life gives you a wheelchair, make lemonade.” So let’s make lemonade together, shall we?

Best,
Julie

Say What? What do you know about "Rosa’s Law” and use of the R-word?

Michelle Diamont writes in the 9/21/10 issue of Disability Scoop that “The House may vote as early as Wednesday evening on a bill to replace he term “mental retardation” with “intellectual disability” in many areas of federal government”. “The legislation is known as ‘Rosa’s Law’ and was approved by the Senate in August. Under the bill, terminology would be altered in federal health, education and labor policy.”

Recently, Jennifer Aniston was in the headlines for her use of the word “retard” in a TV interview. She isn’t alone, or the first, and can be added to other celebrities who have been called on the carpet in the past, including Rahm Emanuel, Lindsay Lohan and Howard Stern to name a few. 
But it’s not just celebrities being called on the carpet; it is all of us who use, or have used the R-word in the past. Whether implied or not, the stigma that goes along with it is offensive, hurtful and socially inappropriate. One argument is that it is a “slang” word, along with words like “moron”, “idiot” and “crippled” and, therefore, not meant to offend. In my opinion, all these words remain inappropriate under any circumstances and put an unfair derogatory label on those persons who are intellectually disadvantaged.

The good news, though (if it could be called that) is that when a celebrity is in the news for any socially or politically incorrect or inappropriate use of the R-word (or any other racially or socially charged word), it provides us with an opportunity to raise awareness and have a discussion about it.

According to the Life on MSNBC.com website, the associated press writes While "retard" itself was never a medical term, it derives from the phrase "mental retardation," which by around 1900 was commonly used by scientists and doctors, said Peter Berns, executive director of The Arc of the United States, a nonprofit advocate for those with intellectual and developmental disabilities. Even though Berns said its pejorative connotation was established in the 1960s, the phrase "mental retardation" is still used in many state and federal laws, much to the dismay of those trying to stamp out its us.

Still, those seeking to end the term's use face a difficult battle. "This word is deeply ingrained in our psyche. It comes up in a lot of different contexts," said Andrew Imparato, president and chief executive officer of the American Association of People with Disabilities. "We have to kind of call it out and start a conversation about why it's not OK to use the word."

The cause to stop this is just and effects so many people we love; be prepared to defend their rights.
Julie

Say What? What about accessible technology and the iPad?

I recently purchased an iPad for my granddaughter to use during the recovery period following her surgery. Aimee has cerebral palsy, is sight impaired, and has limited motor skills. She loves music, iTunes, You-Tube and a variety of other applications and websites so thought I could provide even more by introducing her to the iPad. And I wasn’t wrong.
The iPad is truly remarkable, especially for those with a variety of disabilities, like Aimee, that limit her ability in almost every aspect of her life. The iPad immediately provided her with a new enthusiasm to do even more. First, its size is small enough to handle and to place on a wheelchair tray, yet large enough to be able to see the screen. It provided focus and interest not only for fun but learning as well.

Apple has built some amazing accessible technology right into the iPad. There is a screen reader and voice-over technology that works with all the standard applications that come with the iPad. A great feature, particularly for the sight impaired, is the ability to use a white on black text setting and to adjust the font size for reading.

The App Store provides a non-stop variety of applications to select from that include books and reading, math, drawing, educational games and music that can be applied for your own child’s needs.

The book applications offer several reading options that include reading aloud automatically, or to read in the traditional manner while turning the pages (which Aimee can do on her own). Holding a finger down on a word provides an instant definition in a dictionary pop-up on the screen.

In his recent SJ Mercury News Column, Around Town, Sal Pizarro states, “Since the iPad was launched in
April, teachers and doctors who work with autistic children and adults have been raving about the device. Apps such as Proloquo2Go and Grace are being praised for their ability to help students with autism and other disabilities build communication skills.”
I don’t own stock in Apple, but wish I did. Thank you, Apple for your example of taking accessible technology to a new level. Now, if we could only get our schools to do the same.

For more information, go to Apple-Accessibility where you will find information about the accessibility features built into all Apple products, including product descriptions. If you have questions, you can email apple at accessibility@apple.com.

I encourage you to head over to an Apple store and check the iPad out for yourself!

Best,

Julie

Say What? Surgery?

Say What? Surgery?
Aimee, my granddaughter, has cerebral palsy. I’ve been her medical guardian for some time now for her disability-related medical care. Over a year ago it was suggested by several doctors that we consider a baclofen pump for Aimee. This option was thoroughly considered years ago and decided against. But now they do a trial first so we reconsidered the option for an intrathecal baclofen pump (a medication delivery system for the treatment of spasticity). 

The decision to proceed was made but the process has been another thing.  Months of doctor visits and evaluations by pediatricians, psychiatrists, neurologists, neurosurgeons, orthopedists, and therapists---all concurring that Aimee would benefit. Then there were x-rays, a spinal tap, and MRI’s requiring an anesthetic. Once again, concluding that Aimee was a candidate.

Finally, her parents and I evaluated the facts and made our best decision to move forward with surgery. But then...what? We would have to wait for a surgery date---weeks, maybe months—because it’s an elective procedure. “We’ll call you” they said....and the waiting began.
In the beginning I agreed to take Aimee to all her visits and provide her post-op care since parents both work.. It’s been a challenge for Aimee and she has been a champ through it all. Often verbalizing her fear and trust in me. To the best of my knowledge, I haven’t let her down. I’ve supported her through it all while trying to make it fun and interesting to meet new people and experience new things.
The surgery is Tuesday. We just finished all the pre-op appointments and tests this week and will enjoy the weekend before heading to Oakland Monday for an overnight in the hotel to get to the hospital early Tuesday morning. Aimee understands the surgical process (I’ve been brutally honest) and how the “pump” will benefit her. She’s eager to be able to do more. Last night she told me she would like to “take dancing lessons or play an instrument”. Why not dream? She’s thinking of new possibilities for herself and I support her all the way.

She deserves something special to look forward since her camp week had to be cancelled.  Her surprise, after surgery, is a new iPad I’ve set up for her with music, books, videos and games. She loves technology and is eager to learn and do anything new.   I think will be able to manage this, and it will be a great opportunity to get her hands working.  I’ll keep you posted on it all.
Meanwhile, keep us in your prayers!

Julie .

Say What? It's 4th of July weekend...let's get physical!

This long weekend is the perfect time to enjoy at outing at the beach, a park, a picnic with family and friends, or simply a BBQ at home or day by the pool. But in all the excitement and planning let’s not forget to include something special for our children with special needs. Their day can be boring if they are not included in the fun and games.
A trip to the park with nothing to do is not amusing for a child with special needs.  Sitting in a wheelchair watching from the “sidelines” is not fun. Being excluded and isolated is monotonous and boring.   Most parks do not have appropriate surfacing or adaptive play equipment for a child in a wheelchair to enjoy. Picnic tables are often inaccessible. But, even so, there are other activities you can plan to do.  So get creative and think about what you can do to make your child enjoy the day too.

With a little imaginative planning ahead, and perhaps some “adaptive” equipment of your own, children can participate in the fun and games together.  Consider teaming up to play baseball, basketball, volleyball or soccer. Perhaps you’ll need a softer ball; maybe a plastic bat; or a large rubber soccer ball that can be kicked from a wheelchair. An able-bodied child or adult can easily assist so that all can participate and enjoy competing together in a game.

Water sports are always fun. If you child has limited swimming abilities, consider a trip to the pool store for a variety of flotation equipment and select what works best for your child’s abilities. A ride in a boat is always great fun; but be sure to use a life-jacket at all times---even in a simple paddle boat.

Going to the beach? Most of the state parks have adaptive wheelchairs with large tires that can be checked out for free at the ranger station. These chairs are wonderful and roll along the sand easily. We also carry along Aimee’s adjustable bath chair to use like a “lounge chair” when we take our granddaughter to the beach. It works perfectly and permits her to sit on the sand and enjoy the activities right along with everyone else.

Our children already have limited physical education at school and often miss out on the opportunity to compete in sports. It’s up to us to get them involved, get them moving and include them in whatever activities everyone else is doing. Their smiles will make it fun for all!

If all else fails, how about a long walk along a beautiful trail as you identify items of interest along the way---maybe even make a collage of collected leaves, twigs, shells or seeds.  Whatever you do, of course, always consider safety first…and please don’t forget a hat, and sun-screen!

Enjoy!
Julie

Say What? What about "Prom Season" and your special needs child?

What do you do when your child with special needs wants to go to the Prom?
You take them, of course!

Michelle Diament notes in her article, Salons Pitch in to Make Prom Memorable for Girls with Special Needs, May, 2010 issue of “Disability Scoop”, “In the process these girls (and boys, I might add) with special needs also get to be included in the annual right of passage alongside their typically developing peers”.

For girls; going to a salon for a new hairdo, getting a manicure and/or pedicure, and putting on make-up for the special occasion are treats they will undoubtedly enjoy. Your child may, or may not, be able to perform these tasks on their own and may require your assistance. If budget doesn’t permit going to a salon, how about doing a “spa” day at home with your child and maybe even an invited friend? It is easy enough to do a mini-facial, manicure and hair style yourself. Or, if necessary, use the resources of friends and family.  In any case make it fun and make it special.

Why shouldn’t these kids have the experience, and pleasure, of wearing a tuxedo, buying a prom dress (and the accessories to go with it) and the joy of experiencing their own prom night?  If there’s no official "date" perhaps a parent or relative can step in and be an escort.

When my granddaughter, Aimee, a tween, comes to visit we always plan “spa” time, or what she likes to call the “royal treatment”. This time includes all the special grooming tasks that don’t routinely get done on a day-to-day basis but that are, nevertheless, necessary to maintain good hygiene. For us, this might include treatments for skin, hair, nails and teeth and maybe even a little make-up. By making it fun and special, it will encourage grooming that your child might not otherwise enjoy and you will be amazed at how cooperative your child can.

The prom is important…..but please don’t wait for prom night to make your child feel special….do it routinely and do it often.  Looking the best we can builds confidence and makes us all proud of who we are. Children with special needs are no exception; let's all help to make them be the best they can be!

Regards,
Julie

Say What? Did you understand the message behind “Glee”?

Some time ago I wrote a blog about the TV program “Glee” and the actor, who plays Artie, who is in a wheelchair but who isn’t really disabled. As the series unfolds Glee has apparently generated more controversy and debate about real actors playing persons with disabilities on this and other TV programs.

Tuesday night’s episode was about being true to oneself. This was played out by several of the characters as they sang and danced their way through their difficulties. Rachel looses her singing voice and Finn calls her a “vocal cripple”.  (I thought this was an interesting choice of words.) Then he takes her to meet his friend, a quadriplegic.

I was pleased to learn that they used a real disabled actor to play a (real) role as a quadriplegic who had a spinal cord injury. The scenes involving this actor were realistic, touching and meaningful. In fact, I felt that the entire episode had many provocative moments, especially when Rachel first meets the former athlete who is paralyzed from the neck down. He says how much he misses his body, his friends, girls, and his life! .But then he says he has learned more about himself…that he likes math and can sing. This touches Rachel’s heart and she makes a return visit on her own and offers to give him singing lessons.

The message was clear—appreciating what you have and not that which you have lost.

We all have so much to be thankful for in our own lives. We truly must learn to embrace the gifts we have and make the best of them.  I felt the concluding message was most meaningful. I may not get the words exactly right, but here’s the message, as I heard it (told by a dad to his gay son):   It’s your job to be yourself and the parent’s job to love you for what you are.

Isn’t that so true? We love all our children for exactly what they are.

Blessings,
Julie

Say What? What about quality of life for children with special needs? Part II

It pleases me no end to see that my granddaughter, Aimee, has a wonderful quality of life. She is well-loved and has many activities and events with her family and friends.  I notice that she enthusiastically anticipates activities and events that include her.

A loving and supportive family can make all the difference in the world. Inclusion in most, if not all family activities, outings, and travel will provide rich experiences and opportunities for the child to develop quality relationships.
Sports and adaptive sports can provide an outlet for physical activity and an opportunity to build confidence. Music and art can also provide opportunities to develop creative outlets and interests; even if it is simply listening to music or looking at art. Reading, crafts, and other activities with others can provide hours of enjoyment and gratification.

Appropriate equipment and mobility aids, as well as a safe and accessible home will provide a secure environment. Physical therapy and training will help maintain body strength and a good physical quality of life.

Emotional well being: A sense of belonging, participating, and inclusion provide the child with the confidence to interact with family and friends and reap the rewards of loving relationships. Participation in school and community activities can also help to develop appropriate behavior, as well as communication and social skills.

Education and school involvement are important. Classroom participation and perhaps even mainstreaming in school all contribute to a positive and rewarding learning process. The right tools, as well as technological assistance in the classroom can heighten the child’s overall interest and satisfaction in learning.

We can all make a difference in adding to the quality of life for our children with special needs. I encourage you to think about what you can do to make a difference to a child in your life.

Best,
Julie

Say What? What about the quality of life for children with special needs? Part I

I believe that children with disabilities and/or special needs can have, and deserve to have, the same good quality of life as their siblings and peers. It may be a slightly different quality of life, but nevertheless a good one and one that provides them with all the rights and benefits of able-bodied individuals.

Attitude, motivation and involvement on the part of the entire family can make all the difference in the world to a child with special needs.  All children can participate and partake in family life to ensure their pleasure and happiness even if it means that the variety and severity of impairment(s) for one child may require different care. Children, regardless of ability or disability, should be encouraged to express their wants, needs, desires and goals. I believe humor should be encouraged, particularly in children with special needs, so that they too can experience laughter while sharing in loving relationships at home.

The quality of life provided to a child with special needs may largely depend on the quality of life experienced by the family as a whole. Some parents will often implement their own social restrictions because of, or to care for, their child with special needs. Perhaps finances, living arrangements and outside (or extended family) support may play a role.

Providing the best quality of life possible for our special kids should be easily achieved.  A loving and happy quality for a child with special needs is undoubtedly dependent upon many factors not the least of which is love.

What do you do to create the best possible quality of life for your child?

Best,
Julie

Say What? What about dogs as Service Dogs and pets?

I’m at my desk thinking about my blog topic for today; and, as I look down at my beloved Golden Retriever, Griffie, curled up under my desk, I’ve identified my topic. He was formally trained as a guide dog by Guide Dogs for the Blind in San Rafael, and even graduated from their program. Then he was assigned to a sight-impaired individual, to begin his career when he suddenly developed chronic bilateral eye infections and was immediately retired before he even got started. It was undoubtedly a great loss to the individual who spent months training him as a guide dog.

But, it was our good fortune to be in the right place at the right time and have the opportunity to adopt this loving boy from Guide Dogs. Griffie, now ten, is extremely smart, and has been a treasured member of our family for the past eight years. We have reaped all the benefits of his professional training especially since he does not bark, and only relieves himself on demand. What really amazes us most, though, is how he seems to sense his “responsibility” when our granddaughter Aimee is visiting.

He immediately positions himself at the left side of her chair and stays close by during her entire visit. I should say, though, that part of this is that she might drop a crumb of food which he will happily gobble up in an instant. He sleeps by her bed (sometimes on her bed) and walks at the side of her chair everywhere in the house, even if it means tripping over him to make a tight turn or navigate a narrow hallway.

I’m especially touched when we are out walking in public where he remains at attention by her side, proudly doing the job he was trained to do long ago, even though it is not expected of him.

Dogs, in particular, whether trained as a service dogs or not, can provide assistance in many ways---not the least of which is unconditional love and companionship especially to those with disabilities and special needs.

The U.S. Department of Justice, Disability Rights Section, describes service animals as follows: “Service animals are animals that are individually trained to perform tasks for people with disabilities—such as guiding people who are blind, alerting people who are deaf, pulling wheelchairs, alerting and protecting a person who is having a seizure, or performing other special tasks. Service animals are working animals, not pets.”

I’ll be writing more about Service Dogs in future blogs. Right now I would love to hear from you what your pet means to you.

Best,
Julie

Say What? What you need to know about Autism Awareness Day, April 2

Has your life been touched by a child with Autism? 

On November 1, 2007 the United Nations called for one day each year to be designated as World AUTISM AWARENESS DAY to increase people’s awareness about individuals, particularly children, with Autism. This year it is Friday, APRIL 2, 2010.
The month of April is National Autism Awareness Month. In the United States, Autism affects 1 in 110 children. According to the Easter Seals Disability Services, the number of children with autism in California has increased from 13, 979 in 2000 to 46,069 in 2008. These numbers are astounding and it is important that we all understand and extend our support to the 13 million families of children with Autism.
A mysterious developmental disorder, Autism typically appears by the age of three, and presents itself in varying degrees from mild to severe. There is no cure for Autism, but early diagnosis and intervention can make a difference in communicating, learning and interacting with others.

The first signs of Autism appear in early childhood and often include:
Difficulty interacting with other children and adults.
Lack or delay of verbal and non-verbal communications.
Repetitive behavior and/or language.
Limited scope of activities and interests.
Aversion to being held or hugged.
Lack of or limited eye contact.

Show your support of families dealing with Autism by raising your own awareness about their needs.  To learn more you can tune in for “Unlocking Autism” premiering Monday, April 6 at 8pm on Discovery Health Channel as well as watching episodes of “Glee” which will be spotlighting disabilities in the coming season. Or you can visit one of the many websites about Autism such as the Autism Society at www.autismsociety.org to learn more.

Best,
Julie

Say What? Added Costs for Special Needs Care Strains Families and Budgets

My previous blog offered my opinions regarding the new Obamacare plan and how it might affect coverage for parents of children with special needs.

Regardless of insurance coverage, the best of insurance plans will not provide coverage for many of the incidental costs of providing care for children with disabilities.

We may take for granted the regular costs of raising a family, however, hidden additional costs contribute to the financial strain experienced by so many families in the best of economic situations, let alone in the current state of affairs.

Programs like Medicare, Medicaid and State Children’s Health Insurance Programs (SCHIP), may offer coverage for limited services, however, do not cover the significant out-of-pocket costs, in addition to deductibles and co-pays, for the necessary related equipment and supplies. These necessary expenses might include prescriptions; over-the-counter medications, ointments, and supplements; diapers; special bath and toileting equipment and supplies, and specialty food items and feeding implements. Then there’s special equipment for seating, standing, and mobility; wheelchairs, special strollers, trays, standers, walkers, gait trainers, and more.

I haven’t mentioned the additional costs for physical, occupational, speech or other therapies that are not covered by insurance. What about the cost of gasoline and transportation to the more than average number of health-related office visits? How about tutoring, caretaking, and counseling costs? Then there is loss of income due to time off work for the increased number medical appointments, procedures, IEP meetings, or incidents that unexpectedly arise.   Some parents cannot hold a full-time jobs because of their responsibilities as a parent to be available on a day-to-day basis.

Parents, feeling the burden of these expenses, are often forced to prioritize and compromise activities and expenditures the entire family might otherwise enjoy. Regardless of the family’s economic status, or the disabilities involved, these hidden costs are often a hardship and can put a strain on the parents, and entire families, of children with special needs.

I know, I’ve been there for the needs of my granddaughter. My heart goes out to all of you in these difficult times!

Best,
Julie

Say what? What about the new healthcare bill and special needs kids?

Let me begin by saying that my past experience of 30+ years in the healthcare field and owning a large medical billing company provide me with the qualifications, I believe, to express my personal opinion here.
In addition, I've been dealing with my granddaughter's healthcare issues for 12 years and, I might add, it's been a challenge from the start.

Some of you may think the new Obamacare plan will benefit disabled children and adults.
If it truly offers coverage for those with pre-existing conditions, this is the only benefit I can see.

We know that most private insurance companies, with the exception of premium plans, provide little, if any, long-term care for the disabled. Medicaid and Medicare plans only provide services when “approved and authorized”. Authorization is usually provided based on the end result or gain. If there is no gain, there is usually no service. We know what happens without therapy and other needed services. It becomes an unfortunate vicious cycle for all concerned.

Don’t be fooled by broad terms like "basic benefits" and "covered".  They are not the fine print. What is "covered" is not what is "approved" or; for that matter, even "allowed".  

Authorized, allowed and approved are the key words in fine print!

What if your child doesn’t walk, or talk? What then is the benefit of therapy? Is there a gain? What about premature babies and the cost of keeping them alive? What about children born with syndromes and severe disabilities? What about those that are institutionally deemed?  Where will it end?

What’s that you say? Counseling is a benefit of the new plan? Think about it.

Physicians providing care to Medicare and Medicaid patients are currently difficult to find because they cannot sustain their practices on the reduced reimbursement rates. What makes us think highly trained specialists will be available to us (all) in the future if reimbursements continue to drop by adding, still another government plan? How can they remain in practice?

This is truly a tragic and sad turn of events, at least to me. By rushing into a decision that should have been carefully evaluated, I believe our government as put the wheels in motion that signal the beginning of the end of the most wonderful healthcare delivery system in the world.

What do you think?

Best,
Julie

Say What? What is Equal Play?

As a member of the Rotary Club of San Jose and a Park Commissioner for the City of San Jose I don’t have to tell you that I’m passionate about parks. And I’m passionate that our parks be accessible to everyone in every way.

Finally, after many years, the recreational needs of children and adults with disabilities are being addressed and something is actually being done about it. This includes accessible trails, (adaptive) sporting events, camping opportunities and equal play parks.

The San Jose City Council recently approved the Rotary Club of San Jose’s project for their 100 year anniversary. What’s the project? It’s an equal play park that the Rotary Club will construct as a “turnkey” project and gift it to the city.

For those of you who may not know the meaning of “equal play” it means just that; a play area that includes equipment for all children regardless of their abilities or disabilities, to play equally side by side. The play area has not yet been designed, however, will feature elements that will address all children but in particular children with special needs and disabilities to make a day at the park a fun experience for all.

In my opinion, there’s no better way to raise awareness than for children with special needs than to play side by side with their able bodied friends, siblings and peers. Equal-play parks, sometimes referred to as “boundless playgrounds” are popping up everywhere and it’s about time!

Our neighborhood community centers also offer many programs and all access recreation activities. I encourage you to check them out. To learn more go to the PRNS website www.sanjoseca.gov/prns.

Special thanks to the City of San Jose and the Rotary Club of San Jose for making the dream of an equal-play park a reality!

Best,
Julie

Say What? How "disability friendly" is your business?

It's my impression that we all take for granted the ease in which we enter and/or exit a store or business; walk the aisles once inside; or step up and down curbs and walkways to get to our desired destination. 
And, how about parking and getting in or out of a car (or wheelchair)?  And, let's not forget the difficulties with seating in restaurants when dining out.

Can you imagine how difficult these simple tasks can be if in a walker or wheelchair? 

Please give thought to these simple considerations for evaluating
business "accessibility friendliness".

*   Do entrance doors have automatic openers?
*   Is the entrance to the store or business easily accessible to disabled persons and particularly those with mobility limitations? 
*   Are there steps?  Is there a ramp?  Is there a lift or elevator?
*   Are aisles wide enough to maneuver and accommodate wheelchairs?
*   Are there accessible restrooms, phones and water fountains?
*   Are there accessible tables that accommodate wheelchairs?  Or moveable seating?
*   Are disabled parking spaces provided with space for vans with lifts?
*   Is there appropriate signage for elevators and public restrooms?
*   How about the staff?  Are they cusomter-friendly?
*   Is staff helpful and courteous to those with (visible) disabilities?
*   Is assistance provided to move barriers to reach goods or services?
*   Does the business employee individuals with disabilities?

It has been my experience that most businessess make an effort to genuinely accommodate and extend courtesies to those in need, especially the disabled.  Unfortunately, there are still some (and I know we've all experienced them) who do not have a clue.  
I believe we can all help raise awareness, in a courteous way, by educating businesses when they fall short in the area of "accessibility friendliness". 

Best,
Julie

Say What? How important is music to your special needs child?

It has always been my personal impression that music is extremely important to children with special needs.
I can only speak from my own personal experience.  Granddaughter, Aimee, has always been passionate about music and has reacted positively to all types of music.  When an infant, she didn't respond to much, if anything,  but did respond to music.  In fact, the first time she smiled was while listening to a familiar tune she recognized.  This was a major breakthrough which I've always linked to her love of  music.  She didn't speak until age three and a half, however, once she could talk, she readily began singing familiar words to the tunes she knew. This, in turn, broaded her vocabulary and her desire to speak.

A recent article in the San Jose Mercury News  "Studies find music may give voice to those who can't speak" (Sunday, 2/21/10) written by Randolph E. Schmidt points out that words and music are natural partners and it seems obvious they go together.  He states that studies have found overlap in the brain's processing of language and instrumental music, and that new research suggests that intensive musical therapy may help improve speech in stroke patients.  In addition, researchers said, music can help children with developmental dyslexia or autism more accurately use speech.

Gottfried Schlaug, associate professor of neurology at Harvard Medical School told the meeting of the American Association for the Advancement of Science, "Music making is a multi-sensory experience, activating links to several parts of the brain".

Music can be integrated into all kids of educational games and activities as well as set the mood for rest and relaxation. My suggestion is to play lots and lots of music for your children.....it can't hurt and can only help!

Best,
Julie

Say What? An IEP Checklist app for your iPhone!

This morning I downloaded the IEP CHECKLIST from the iPhone apps to my iPhone.  It is free and available to parents, teachers and other professionals who make up the IEP stakeholders group.  It can be downloaded by going to the app store on your iPhone or iTunes.

I am confident that parents who attend these meetings will agree that they are often confrontational and challenging. At least they have been in my case.   Determining what is best, and/or available to meet the needs of your child is not always what teachers, therapists and other professionals are eager or willing to offer.   The best outcome can be achieved by being prepared and informed regarding the rights and services available to successfully advocate for your child at these meetings. 

The IEP (individualized education plan) application is well is organized for your use.  Categories include team members, notifications, goals, services, supports & aids, student placement, federal regulations, and transition plan to name a few.  Each of the categories has more detailed information that can be easily accessed by selecting that portiion of the application, which then takes you to appropriate sub-title options.

This nifty tool will inform and empower parents as they nagivate this (often difficult) process to advocate for their child in developing the best IEP possible.  If you have an iPhone I highly recommend it.

Best,
Julie

Say what? Olympian inspired by brother with disability...

I watched the NBC news coverage of Alex Bilodeau's outstanding performance during and after the men's moguls event and was impressed.  But, what really impressed me was what followed.

When the camera spanned the audience and the commentator focused on Alex's older brother, Frederic (age 28) who has Cerebral Palsy, I was glued to the TV and I soon realized there was more than one winner in this story.  This came to light once again when I watched a short documentary before the award ceremony which featured Alex and his brother.  It showcased their loving bond and tears filled my eyes as Alex himself, was quick to respond (once again) that his older brother was the inspiration behind his gold medal performance. 

Frederic, although able to walk some, apparently spends most of his time in a wheelchair.  He cheered and raised his arm in praise of Alex's performance; so proud of his brother's win!  But he is a winner too, for his own inspiring example to never complain and to perform to the best of his ability.   

Alex's own soft-spoken words deeply touched me when he said, "When he wakes up he's got that big smile, and when he goes to bed he's got that big smile."  

Does that sound like anyone you might know?  It definitely sounds like a special girl in our family who inspires us all with her courage, her determination to succeed, and; of course, her beautiful smile!

These young men are both heroes in my book and role-models for all siblings who live with, or with somone, who has a disability! 

Best,
Julie

Say What? What about sports for children and individuals with disabilities?

Challenge, Competition, Camaraderie, Cooperation, and Commitment…..
What do they have in common?
All provide life lessons that will build character through involvement in sports.

I recently had an opportunity to meet with women from the Bay Area Women’s Sports Initiative, BAWSI (pronounced “bossy”). These female athletes and coaches inspire girls and young women with the example of leadership and community service. They are making a difference not only for girls, but beyond that; for boys and girls with disabilities by providing after school sports experiences for children, especially those in wheelchairs.

The San Jose Mercury News Sports Section, January 24, 2010, had a photo and short article featuring the Special Olympics of Northern California Floor Hockey competition. Not too much attention, but enough to mention and raise awareness…a start to featuring such events.

On Sunday, while preparing to sail San Francisco Bay with friends, I noticed a group of individuals in wheelchairs manning a large boat docked at South Beach Harbor. This group of individuals, along with their families and friends, were from the Bay Area Association of Disabled Sailors, BADS.org,

Because of these recent experiences, I have been educated and am delighted to learn that there are so many organizations providing sports activities for children with disabilities and special needs. In addition to these groups, the City of San Jose Office of Therapeutic Services, organizes sports activities for individuals with disabilities at various community centers around the city.

Soccer, hockey, basketball, bowling, skiing, skating, tennis are but a few sports activities available that provide accessibility for all individuals, regardless of ability or disability. The thrill of participation; being part of a group or team; the anticipation of games, events and activities; and, the joy of participating side by side with others will enrich the lives of all involved.

If you haven’t already done so, please look into the organizations in your community that offer sports activities for children and teens with special needs. If you already are involved, I hope you will share your experience with others.

Best,
Julie

Say What? Television and persons with disabilities

A recent scene of the TV episode “Glee” had members of the Glee Club in wheelchairs for three hours a day. In the same episode, a girl with Down’s syndrome tried out and made the cheerleading squad, even though she was criticized by her teacher/coach for her poor performance. But, as we learn at the end of the episode, the teacher/coach has a sister with Down’s syndrome. Their visit provides us with insight into a rare and tender moment with an otherwise prejudiced and difficult woman.

All of this is great since television provides us all with an opportunity to reinforce attitudes and raise awareness regarding individuals with disabilities, particularly those in wheelchairs. But it’s not all fun and games. In the end the music stops and unlike real life, the cast can get up and walk away.

Lynn Elber, of Associated Press, addresses this in the Arts & Entertainment section of The San Francisco Chronicle on Friday, November 13, 2009, when she states,

            “The scene in (Wednesday’s) episode of the hit Fox series “Glee” is yet
            another uplifting moment—except to those in the entertainment industry
            with disabilities and their advocates.”
            “For them, casting of a non-disabled actor to play the paraplegic high school
            student is another blown chance to hire a performer who truly fits the role”

            “Executive producer Brad Falchuk states, ‘It was very hard to find people
            who could really sing, really act and have that charisma you need on TV.’”

Have you seen “Glee”? What are your thoughts?

Julie

Say What? Shopping in a Wheelchair

Happy New Year everyone!
In the course of the holiday season I had the opportunity to do some shopping with my granddaughter (who is in a wheelchair) at a large indoor mall and at Union Square in San Francisco.

For starters, the inconsistent response by the general public to those in wheelchairs is notable. Some individuals are courteous; help with opening doors, move aside, and, in general, are pleasant and eager to assist in some way. On the other hand, there are those individuals who are outright rude; who refuse to move so you can pass, jump over or in front of the wheelchair to get ahead of you, let doors close behind them rather than help (even when they notice your obvious difficulty), and make no effort to assist in any way but rather give you unpleasant glares for inconveniencing them.   One of the most difficult situations is getting in and out of a crowded elevator with people who refuse to move.

If that isn’t enough, many smaller shops and stores have no consideration for those in wheelchairs, walkers, or even twin strollers. The aisles are so small or crowded that it is impossible to maneuver or get to the merchandise. Needless to say, those stores missed out on any purchases from me. Fortunately, the larger department and chain stores have adhered to the ADA standards of making all aisles accessible to everyone. Two stores in San Francisco, very large and popular chains, had so much merchandise on the racks, spilling over tables, and on the floor that it was impossible to pass. The safety factor in case of an emergency would put everyone at risk, let alone an individual in a wheelchair.

Make no mistake---help from others is not expected, but it is always appreciated. I hope retailers will broaden their awareness by making sure that their entrances, exits and aisles are accessible and safe for everyone, and that consumers will take a moment to extend simple courtesies when the need arises.

Julie