by Yvonne Blomer
Source: Island Parent Magazine
Originally Published: April 2019
Saturday morning is coffee, cookies and books in bed time.
This is known throughout the Blomer-Gadd clan. When the cousins visit, even though they are getting older and bigger, they come with their books and we squeeze into our not-huge bed. Husband, son, mom, cousin, cousin, dog, cousin’s dog, etc. We have tea or coffee and ginger snaps or homemade cookies and we each have a book.
Colwyn, our 12-year-old son, has a pile of well-read Robert Munsch books. Often my husband gets up mumbling about a king-sized bed. Sometimes Colwyn speed-reads through his books, especially if waffles have been mentioned. Other times he reads at a leisurely pace. On occasion, I am in charge of reading, so we get to hear favourite books again, or new books he’s not let us get near because they are, after all, his.
Colwyn has Prader-Willi Syndrome and Autism. He is developmentally delayed and nonverbal, possibly due to apraxia, or difficulty planning and coordinating movements necessary for speech. In other words, it takes more effort to vocalise and the more he vocalizes the harder it is to plan for it.
Nonetheless, he loves books and reading, however he might define that for himself. His Robert Munsch books have been read and reread since he was born. We started with the feminist literary masterpiece The Paper Bag Princess. He has two copies of Just One Goal, his Sandcastle Contest is dog-eared and duct-taped and I get a look if I forget to do the voices. He has a regular and mini version of Stephanie’s Pony Tail, a book that reminds us to embrace our differences and hold to our beliefs.
Does my son read them to himself?
I’m pretty sure he has them memorized and that the characters are as real to him as Harry Potter is to most neurotypical kids. Reading is a tricky thing when your child is nonverbal because he can’t easily demonstrate his ability and we can’t test it. When he reads aloud, due to apraxia and anxiety about getting it wrong, he gets quieter and less clear. Colwyn’s speaking is very quiet and unvoiced. The word “mom” is clear, but “book” sounds like “bu-k” and there is often a pause between the beginning of the word and the end. It’s important to not fill-in for him. So, when Colwyn says “bu-,” I wait. Then I sign the letter “k”, and he says “k”. Of course, we all forget to wait because neurotypicals aren’t always patient.
Research from the Reading Recovery program to intervention for adults with early-onset dementia shows that the brain does better when movement and music are added. With this in mind, we have incorporated play or music into everything from singing the alphabet song while on the trampoline to enacting stories with stuffed animals. Colwyn loves hide-and-seek, so Easter is a perfect time to hide Easter treasures and give short, written clues for him to read and figure out. My mom did this for my sister and me, so it is also a great family tradition to carry forward.
A few years ago, in music therapy, Colwyn with his music therapist, Dr. Johanne Brodeur, recorded the book I Know a Shy Fellow Who Swallowed a Cello. I read the passages, while Colwyn and Johanne chose musical instruments to match the story from varied musical choices in Garage Band.
“There was much laughter and certainly tons of choices and discussion on how to proceed with the story to make it a musical story version,” says Dr. Brodeur. “Colwyn worked very hard at making choices and assisting in narrating the story. He took great pride as his musical recording project evolved.”
He also memorized the book.
Colwyn is an attentive listener and we often follow up by asking about setting, main characters and the kick off. When I homeschooled Colwyn from grades 3 to 5, we read a lot of early chapter books such as The Magic Tree House series and Dragon Master series. From these books, we created all manner of art projects to help Colwyn engage with the books. For example, we created a file folder book about the Arctic after reading Polar Bears Past Bedtime and a large red dragon after reading Power of the Fire Dragon. Mo Willems’ Elephant and Piggie books are accessible and Can I Play Too, a great one for exploring inclusion, when Snake wants to join Gerald the Elephant and Piggie’s game of catch, “But don’t you need arms to play catch?”
Nowadays I wonder what we will read next as Colwyn gets older, but is still developing his skills. I also wonder how to normalize my son’s reading level at middle school. The low-incidence class room has superb resources, but how does it feel to be reading a book at his level in the larger school?
A few years ago, my husband, as a Grade 4 teacher, had a class of very low readers. Because most of the kids were reading below their age, he was able to create a climate of acceptance around reading picture books and early chapter books. The kids seemed to move from shame and embarrassment paired with a total disinterest in reading, to reading whatever they could without shame. As an adult, I rarely worry if I’m reading a picture book with gorgeous illustrations, a graphic novel, a youth novel or adult novel. My age doesn’t matter.
As we continue with our reading life, I’ve begun noticing my son’s expanding ability to find things on YouTube. I’m starting to wonder if he’s reading at a higher level than we give him credit for. More than this, because of his ability to follow patterns, he can find a well-buried song through several openings and closings of other songs until the one he wants pops up. He has the names and order of songs on most CDs in our house memorized and finds it frankly frustrating that I do not. He picks up on or creates patterns to help him find things when he’s highly motivated. This is a skill that will help him with reading, speaking and writing.
In addition to You Tube, Colwyn can independently read a book through his iPad. Apple never imagined when they created the iPad how immense it would be for people with special needs, especially on the Autism spectrum. Colwyn’s teacher uses the Raz Kids app and Colwyn loves Moonbot Books’ Billy’s Booger, A Memoir and The Fantastic Flying Books of Mr Morris Lessmore both by William Joyce, whose paper books are also superb. If you don’t know the app Pictello, check it out. Colwyn can take pictures, write stories or journals, and they are then read back to him. He can share his knowledge and abilities through Pictello.
Since September, Colwyn and I have taken to writing Haiku together, in the morning, after cookies and coffee, instead of books in bed. We look out the window and I say a few words or ask a question, he chooses or makes changes until we have a short poem. We’ve now created 23 haiku, which I’ve written in a notebook that sits on my night stand. I write it and he then reads it back to me before we get up and get on with our day. I’m trying to figure out how to get me more and more out of this process. For now, it’s a collaborative process, one word or choice at a time.
From March 1:
Thinking of a swing,
last month’s snow on the garden.
Spring is coming.
by Colwyn Gadd (with permission!)
Yvonne Blomer is a Victoria writer and the past Poet Laureate of Victoria. Her most recent books are Sugar Ride: Cycling from Hanoi to Kuala Lumpur and Refugium: Poems for the Pacific.
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