Monday, March 14, 2011

Wednesday, October 13, 2010

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?


Wednesday, September 22, 2010

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 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.

Friday, September 17, 2010

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

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



Sunday, July 18, 2010

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 .

Friday, July 2, 2010

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!


Tuesday, May 25, 2010

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!


Thursday, May 13, 2010

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.


Tuesday, May 4, 2010

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.


Thursday, April 29, 2010

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?