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)

Home-School Communication Ideas

I make a leap of faith every morning when I send my non-verbal son on the van to school. How did his day go? Did he eat a good lunch? How well did he participate in his class work?  Was he cooperative with teachers and peers? Especially at the start of the new school year, what parent doesn't worry about their child's day?

In his early school days, we received daily notes as any parent would. But now that's he's in middle school, his day is very full leaving little down time for his teachers to write copius notes. But to parents of non-verbal kids, the notes are as important as ever. 

It's important to have open but structured methods of communication with our children's teacher, therapists and school nurses. I try to make it as easy as possible. I send in an easy-to-use single talker or a weekend-news communicator I designed to share news from home. I provide a notebook to share daily news. Below are some links to pre-made forms that teachers can fill out to provide great info for parents. Many were designed for children with autism but they will likely work for all kids with communication challenges.

Examples: Home-school communication forms
Book: My PECS Home School Communicator
Pre-made forms on Mayer-Johnson's Adapted Learning website
Kit: School Nurse Communication Pack

How can we keep lines of communication open and easy? Any ideas?

Accessible Fun for All Ages - Whale Watching

We spent several days last week (before school starts today!) visting with the grandparents on Cape Cod. To celebrate their anniversary, we all went out on a whale watch from Provincetown. What a  fun day for all!  When I booked the tickets I told them my son would be using a wheelchair. When we arrived, they gave us priority boarding so we were able to get on the boat more easily (and pick an ideal viewing spot!) before the crowds embarked. It was a 3 hour trip and we spotted dozens of  humpbacks and mincke whales. It really was a thrill for all. Our a ha moment - when the guide announced we may hit some swells, we realized that our son is the only person on board likely NOT to get sea sick. He always wears a scopolamine patch ( for motion sickness) to control his drooling. A highly recommend adventure for kids of all ages, 4 to 80!  If you're planning a vacation on Cape Cod, check them out at Dolphin Fleet of Provincetown.

In Out, In Out

It seems the most I can take my two kids and one wheelchair in and out of the car is twice per outing. Call me lazy, call me weak but after two errands I have exhausted my patience and my back. Perhaps this is true with all kids, but my kids start to fuss and whine after two stops. I have a mental rule I go by: if it takes longer to get them out of the car than it does to complete the errand, I don't do it with them. Needless to say, I have become a late night shopper - sans kids. What's your rule?

Care for Disabled Adults...with Autism

The Boston Globe ran an article this past weekend about a wonderfully large grant received by Massachusetts General Hospital (Boston) to start a first of it's kind specialized treatment center for adults with autism. The Nancy Lurie Marks Family Foundation generously donated $29 million to MGH to provide much needed medical care for the growing population of adults with autism.

To quote the Globe, "One of the new center’s primary goals is to train primary care and emergency room physicians and nurses, as well as those who work in surgery, in diagnosing illness in this group of patients and in techniques to improve their interactions." Sounds like a good idea for ALL our kids/adults.

Coincidentally, the new Medical Director will be Dr. Ann Neumeyer, one of the eight neurologists to have treated my son over the years. When the time comes, maybe she'll bend her admittance requirements to visit with an old friend - who doesn't have autism.

See the Globe article: http://www.boston.com/news/health/articles/2009/08/23/mgh_to_target_adult_autism/

Have's and Have Not's

I keep a mental inventory of all the thing that I love about my son despite his special needs and challenges. Here's my list of his have's and have not's:

He has:

• thick hair and long eyelashes any woman would die for
• baby smooth skin without a blemish
• a long, lanky physique and looks great in clothes
• an infectious smile and great teeth (says his dentist!)
• a sweet and gentle disposition
• the patience of a saint, which makes him an excellent shopping buddy!
• an enduring love of books and could be read to 24 hours a day
• an affinity for pirates, knights and swords
• a love of watermelon and other things juicy
• excellent health
• a "diagnosis" of static encephalopathy or cerebral palsy
• an accessible home, where he can crawl from one end of the house to the other - and he does!
• five wheelchairs and strollers (more to come about this)
• excellent driving skills; manages a 400+ lb. power chair with finesse and caution
• dozens of communication choice boards and low tech devices to help him "speak"
• the ability to feed himself, most of the time
• new skills; such as drinking from a straw, getting up onto the couch by himself :-)
• braces and orthotics in a variety of shapes and sizes
• avoidance behaviors
• managed his drooling with help from medication
• sensitivities to certain smell and loud noises
• a dedicated team of teachers, therapists and other educators
• doubled-up health insurance coverage
• grandparents who love him
• a sister who makes him laugh
• a dad who would feed him and bathe him until he is 100 years old
• a mom with a sore back.

He does not have:

• the ability to walk independently
• the ability to talk independently
• the ability to eat ice cream without help
• essential skills such as reading, spelling or addition
• ability to dress himself but can choose this clothes (preferably sweats)
• interest in sports or girls (yet)
• an inappropriate IEP
• temper tantrums
• aggressive behaviors
• stamina (he still benefits from a nap)
• gastrointestinal problems or food allergies
• seizures
• sleep problems
• an autism spectrum disorder
• a compassionate and sensitive sibling
• friends.

The have's exceed the have not's!  Try this yourself!

It's Not Autism

Every one has heard about the facts about autism these days. It's in the main stream press, on the politcal agenda and and all over the web. Research says 1 in every 100-150 children receives a diagnosis of an autism spectrum disorder. But have you heard about the thousands of children with undiagnosed disabilities? What you ask? - with all the excellent hospitals, research and genetic testing now available? There are non-profit support organizations, list servs, blogs and more out there to support parents like us and our snowflake kids. But kids like my son rarely make the news (and then only the sensational tabloids) and there aren't enormous fundraising machines supporting wide scale research, or lobbying groups pushing for legislation and class action law suits. We struggle along trying to do the best for our needy kids and our families.

Occasionally family members and friends ask if our son has autism because he did not look them in the eye or occasionally does some repetitive act. No, I say, he has a developmental disability and like autism, our kids may become over stimulated and do not adapt to social norms. Sometimes it would be easier to say yes, he does have autism and not have to explain it all.

Introduction

I've been thinking about blog topics now for a while - I've got quite a list - so I decided it's time to go for it. I hope other parents out there with children with special needs, autism and undiagnosed multiple disabilities will relate to my random thoughts on adapting our family life and home, and join me to discuss topics which may not be main stream but are truly vital to families like ours.

Our Family

My husband Peter and I have two beautiful children. Our tall, willowy daugher is almost 8 and going into second grade. Our handsome and gentle 13 year old son has an undiagnosed developmental disability with significant motor and communication challenges. He does not walk or talk independently and uses assistive technology including augmentative communication aids throught his day. His diagnosis, if you can call it that, includes terms like "static encephalopathy" and "cerebral palsy". The cause for his disability is unknown. He was born during our stay in London, full term plus, healthy and beautiful.  It was not until he did not meet developmental milestones like sitting independently, did we suspect any delays. From age 9 month on,  he's been seen by eight different neurologists, brain malformation experts, metabolic specialists (on both sides of the Atlantic but mostly at Children's Hospital, Boston) and a cadre of rehab therapists - - trying to put a label on his disability. The only finding? - a reduced amount of white matter of unknown etiology. Autism has never come up in the dialogue.

Unlike other families you read about who were told their child would never thrive, walk or talk (and then turn around to surprise them all but doing just that!), we have been told nothing. Without a definitive diagnosis, no one has ventured a guess as to what our son's future looks like. It's apparently totally up to him, and us.