Poking Fun at Disability Awareness

It's ok to make light of disabilities when you live with them. And why not? There are plenty of people who do and say stupider things about disabilities out of ignorance everyday. For grins and dose of irreverance, take a peak at some of the disaiblity awareness gift items created by individuals with disabilites and their families available at CafePress.com.

If you haven't been there before, CafePress.com is an e-commerce web site where you can upload your own artwork and it's printed on demand on t-shirts, mugs, bumper stickers, pins and more. Disability topics cover everythings from autism to epilepsy to rare syndromes. Search for the term "wheelchair" and you'll see some pretty racy slogans created by and for wheelchair users. MANY NOT FOR KIDS!

While you're there, check out my Say it with Symbols Gift Shop at CafePress. You'll find appreciation gifts for teachers and therapists as well as awareness-building t-shirts for children and families who communicate with picture symbols. Certainly less racy than some topics, but the message is equally as important.

www.CafePress.com/SayitwithSymbol

Adapted Gloves?

I came across these "adapted" gloves at a local shop and thought I would share. It's always a challenge to get gloves on my son; his fingers just don't want to separate and cooperate! And mittens are too baby-ish for a middle-schooler. Check out these fuzzy Wristies! - fleecy gloves without fingers! They come in lots of colors and lengths for kids and adults. I spoke with the owner Susan and she offered to give parents a discount off any order placed online at www.wristies.com if they would help our kids.

Use the code SPECIAL-KIDS to receive 10% off your entire order. Use the "APPLY" button to get the discount. This code is good through Dec .31 but she said the best selection is available early in the season. I think these are great and so easy to get on. And my kids think they are pretty cool too!

Check them out at http://www.wristies.com/

Helping Our Kids Understand Flu Prevention

Our kids with special needs can use extra support in learning flu prevention skills and good hygiene such as coughing into your sleeve and washing hands properly. The good folks at One Place for Special Needs have put together a comprehensive collection of nearly 40 online resources for parents and educators. You’ll find social stories, how-to videos, activities, a communication board for being sick, and visual supports for all ages on hand washing, sneezing, coughing and blowing your nose.

You’ll also find H1N1 resources for parents and teachers, Google flu tracker, lesson plans on germs and emergency planning for people with disabilities.

See:  Special Needs H1N1 Toolkit

Review: Schyler's Monster - and Dad

I make an extra effort to read novels that include children with disabiltiies and especially those using augmentative communication. So the book Schyler's Monster by Robert Rummel-Hudson surfaced from the big book pile next to my bed. It's an honest story about a father's journey and struggle trying to "fix" his broken non-verbal daughter and help her communicate using augmentative communication.
There are several good points to be taken; 1) trust your parental instincts when it comes to knowing your child's abilities. The Rummel-Hudson's persevere to purchase a higher-end PRC AAC device and Schyler uses it with success. 2) it definitely pays to engage the help and support of others (in his case friends and blog readers). I could relate to the chilly treatment they received from family, professionals and outsiders.

A few points were irritating to me as a parent with a child with a brain malformation. Diagnosis aside, why did you wait so long for her to receive more intensive speech services? And I don't consider our kids "broken" and in need of "fixing." I also get prickly when journalists don't use "person-first" dialogue meaning that Schyler is a child first and not her disability. So Rob, please stop referring to her as a "special needs child." Overall, I thought it was an honest account and worth sharing with my husband and you.

Find the book on Amazon:  Schuyler's Monster: A Father's Journey with His Wordless Daughter
Read more about Schyler http://www.schuylersmonsterblog.com/

Including Graham

My husband and I had the chance to view Dan Habib's moving and honest documentary, Including Samuel. Like Samuel, our son with cerebral palsy was an adorable, affable pre-schooler who won the hearts of his teachers and peers. He liked reading about sword-wielding pirates and knights, loved Disney movies, going swimming, watching the Red Sox and being with other kids. He played t-ball with the kindergartners with help from his Dad. And like Samuel, he uses assistive technology including augmentative communication aids, positioning seating, walkers and a wheelchair.

But unlike Samuel, our son has significant global developmental delays including cognitive and social delays. We have to work at getting my son to communicate and show his stuff. He is shy and it can be hard to get him to participate in new activities and socialize with others. We did not have any preconceived plan about inclusion for him but instead tailored our approach to his personality, learning style, his interests and where he has the best chance for success. We chose to have Graham educated in a specialized setting where his team of teachers, therapists and AT specialists have 30+ collective years of experience teaching kids like my son and using technology and adapted materials to support him. And now that he's 13,  it's still a challenge to teach him to communicate, independently participate and read.

And at 13, inclusion is tougher. Rather than seek inclusion for his academics, we chose to have him participate in inclusive social activities. He attends our town's afterschool program (with an aide) a few afternoons a week at our local middle school. We need to structure activities for him to interact with his peers as at this age, kids are into their own things. Though he was reluctant at first, he recently joined a group of kids playing Rock Band on Wii and loved it!  We're working on starting a Signing Club so a group of kids can learn to sign along with my son. Tapping their love of music might be another approach. If you have any ideas for inclusion among middler schoolers, please share them!

I encourage you to check out a local viewing of Including Samuel now being broadcast on PBS stations -- and keep a tissue handy.

http://www.includingsamuel.com/

Oh No, Not Another Picture Book!

As we approach the holidays, well-meaning family and friends will likely ask for gift suggestions for our son with special needs. This can be a tough question, but if you don’t make a specific request, your older child may receive yet another picture book or other inappropriate gift. Every year, we approach gift giving for our son by asking two essential questions: What are his current interests? How can his interests be met in a meaningful, accessible and age appropriate way?

Several excellent, online resources provide reviews of play products. Experts at the National Lekotek Center evaluate toys and rate them for appropriateness for children with physical, sensory, communicative and/or cognitive disabilities. These ratings are available on the AblePlay web site, where there is a description of the toy as well as a list of the skills the item promotes, benefits and play ideas. Parents can purchase toys directly from the manufacturer or add them to a handy wish list to make it easy for others to purchase the products you recommend for your child.

Another great resource from the National Lekotek Center is the Toys“R”Us Toy Guide for Differently-Abled Kids. This free, family-friendly guide features specially selected toys that promote the development of children with physical and cognitive disabilities in the areas of auditory processing, language, visual, fine motor, thinking and social skills. Each toy has one or more symbols that indicate the specific skill so parents can easily identify items best suited for their child's needs. This year’s guide is available online, and of course, all the toys can be purchased at Toys R Us saving the extra shipping costs.

Should your child need specially modified toys, Enabling Devices and Dragonfly Toys are two great sources for switch-adapted and universal access toys and games. Happy shopping!

Read:
Top Ten Tips for Buying Toys http://www.toysrus.com/shop/index.jsp?categoryId=3601775
Gift Ideas for Students with Severe Disabilities at http://teachingall.blogspot.com/2009/04/giving-gift-that-keeps-on-giving.html, or hear the podcast at http://attipscast.wordpress.com/2009/04/28/attipscast-episode-32-gift-ideas-for-students-with-severe-disabilities/.

AblePlay http://www.ableplay.org/
Adaptive Toys Guide www.familyvillage.wisc.edu/At/Adaptive-toys.html  
Dragonfly Toys http://www.dragonflytoys.com/
Enabling Devices http://www.enablingdevices.com/ 
Infinitec’s Section on Play www.infinitec.org/play/shopping/toys.htm
Toys R Us Differently-Abled Toy Guide www.toysrus.com/differentlyabled

It's Trendy to be Slow

I never knew we were trend setters. I've seen a few articles published recently, and a trend-setting book entitled "In Praise of Slowness" by Carl Honore,"  expounding the virtues of slowing down.  There's a worldwide movement slowly brewing encouraging people and families to SLOW DOWN, to enjoy the moment, savor the experience and enjoy each others company. All in the attempt to enhance their quality of life. Slow life, slow love, even slow food.

Heck, we've been doing this for 10 years. When your child with cerebral palsy gets big enough to need a wheelchair, wears braces/AFOs and needs help getting changed and dressed, it's a slow process. Our son is now 13 years old and still requires all the help he needed at 3. It takes us at least 30 minutes to get us out the door to get anywhere. It's hard for us to to out rush and accept a spontaneous invitation. This much work takes planning and I'm still always 10 minutes late.

As anyone who's travelled with us knows, we are slow. Slow getting out the door, slow getting a wheelchair in our van, slow travelling across rough terrain and slower eating meals. We don't travel light. We travel with wheelchairs, strollers and trays packed into an adapted minivan with a cargo rack on the roof. We need time and space.

Perhaps I missed Mr. Honore's telephone call when he was researching his book, but I expect we -and other parents of children with special needs- will be living the slow life for a years to come.

Available from Amazon - In Praise of Slowness by Carl Honore  (also available for Kindle)