Mom’s Wisdom: When Words Won’t Come

babbling

babblingWhile other babies were babbling up a storm, Joey Wasikowski wasn’t able to form sounds or say “da-da.” In fact, he didn’t start talking at all until he was 6-years-old. Even now at the age of 10, the 4th grader can only speak in 3- to 5-word utterances. Joey has severe global apraxia, a condition that affects speech and motor planning, and makes it very difficult for him to speak and be understood. However, he’s come a long way since being diagnosed at 18 months – much further than his doctors originally predicted.

“I was told that he’d never talk, and that I should be prepared for a life of dependency,” says his mom, Michele Wasikowski, of Woodbridge, Connecticut.  Michelle refused to believe the doctor’s prognosis. “I felt, in my heart, that he would someday speak because the desire was there. He was already trying so hard to be heard, by pointing and grunting.”

Michele got a second opinion from an expert specializing in apraxia. “Always get second or third opinions from doctors experienced in your child’s condition,” she advises. With the help of a specialist and intensive speech and occupational therapy, Joey has made amazing progress and continues to improve every day.

Here are some of the ways that Michele has helped her son express himself over the years.

Picture Cues – In toddlerhood, Joey’s speech therapist taught him to communicate by pointing to illustrations. Michele took the lesson a step further at home by creating a poster of images of familiar household items. (For example, she cut out the packaging from the box of his favorite cereal and took pictures of his special toys.) Each image was attached to the board with Velcro, so that Joey could actually remove a picture and bring it to her when he wanted something. “It showed him that language is give and take,” she says. “Instead of just pointing, it was more like a conversation.”

Assistive Technology – Though Michele experimented with sign language, Joey didn’t do well with it. Instead, around the age of 4, he graduated to using an Augmentative and Alternative Communication Device (AAC). While there are several kinds of AACs, Joey’s was made by DynaVox and is a portable device (about the size of an iPad) that can be preloaded with pictures symbolizing objects and phrases. So, for example, if Joey wanted to eat lunch, he could push the “I want” and “lunch” buttons, and the machine would say, “I want lunch.” This device helped to give Joey “a voice,” says Michele, who had to convince the school district to provide the machine.

Private and School-based Speech Therapy – When Joey was 5 ½-years-old, his family moved to Woodbridge, Connecticut, where Michele found a wonderful new private speech and language pathologist to supplement the services that Joey was receiving in school.  The therapist worked with Joey five days a week, and through rigorous exercises was able to get Joey to start saying some words.

Parent Coaching – Now that he’s more verbal, Joey doesn’t want to use his AAC device any longer, but because he’s still somewhat unintelligible, socialization is tough. “It takes a lot of hard work for Joey to make himself understood, and tons of patience for kids to decipher what he’s saying,” says Michele.  As such, Michele has come up with new and creative ways to help Joey be heard.  She invites classmates over for playdates, interpreting for him discreetly. “If I see he’s struggling to say ‘I want to play in the yard,’ I’ll say, ‘Hey, who wants to play outside? I think Joey would really like that!’” When he felt self-conscious about talking during class sharing time, Michele suggested his resource room teacher record Joey doing his presentation beforehand and then play the tape for the class.

“Use whatever tools you can to help your child communicate,” she urges, “and when one thing doesn’t work, try another.”

Resources and Links
Signs of Speech Delays and What to Do Next
Promoting Speech and Therapy
Introduction to Proloquo 2Go for your iphone/ipad/itouch
Mom’s Wisdom: Fostering Friendships

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