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