Lipreading Mom’s Note: When I asked Kate Johnston to write this guest blog post, I had little idea of the parenting challenges she experiences daily. Reading her story for the first time gave me goosebumps. Kate is not only a mom with hearing loss raising a child with autism. She is an inspiring example of a mom who deeply loves her son.
Kate Johnston’s Story
When I was little, speech therapy meant weekly visits to a therapist who sat me at a table and tried to get me to say “ch” instead of “sh” for words like, “champ” and “cheer.” The therapist also worked on getting me to say “s” and the ending consonants of words. And the one that was – and still is – the hardest for me: not using “w” when the sound was “r”.
I was expected to sit quietly at the table and work on the sounds over and over. It was hard work, and the promise of better speech—though I knew what I was trying to say just fine—was supposed to be reinforcement enough. I hated speech therapy.
I still have problems with all those sounds, and the only way I can say an “r” or “ch” is to stop and think about where my tongue goes for those sounds while I am speaking. So much for spontaneous speech.
Fast-forwarding to now: I’m the mother of a 19-year-old son with severe autism; his hearing is fine, but his autism makes his speech unclear. His speech is hard for me to understand; the same processes that make it difficult for him to speak clearly make it difficult for him to sign clearly. I’m the only person in the family with a hearing loss, so we are an oral family, and he shows a strong preference to using his voice to communicate.
The two of us middle along as best we can when it comes to communication. I finally understand when he asks for “soda” (It doesn’t sound anything the way you or I would say it!), so I can give that to him when he asks for it. He often asks for pizza, so I can give that to him when he asks for it.
Every now and then he asks for something I just cannot understand. If I’m lucky, I can figure it out. If I don’t understand and someone else who knows him is nearby, sometimes they can figure it out. They don’t always get it either, but they have a better chance of understanding than I do.
It’s hard, added by the fact he’s never grasped the concept that mom can’t hear well. I’m lucky if I happen to be looking at him when he starts speaking. Asking for repeats goes over his head.
What’s the answer? Speech therapy!
I take my son weekly, and marvel at how speech therapy has changed over the years.
Speech therapy for him consists of lots of “play time” as reinforcement to work on his speech. He gets to choose his reinforcements (a minute or two of a favorite video, a minute or two of his favorite website (www.disneyland.com), or maybe putting together a puzzle) and works on his speech (and social skills), all at the same time. He loves going to speech therapy. He even asks for it when he’s gone from it for a while.
When I get totally frustrated with our communication, thank goodness for speech therapy!
If you have a comment for Kate, include it below and it will be shared with her. -LRM