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!
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I have to say if it were known that I had an autistic child being an hearing impaired mom, I would have really started the sign language skills early on. I feel it is so important that being in a home where a mom or dad is hearing impaired with even hearing children, that some sign language should be taught which is what I did early on. That was my biggest fear as a new mom, was being able to understand my own child as I had trouble hearing other children before having children so I knew I was going to teach some simple signs. I used Signing Time DVD’s with my child. Then I learned that sign language helped parents to communicate with their children with other disabilities as well in communication areas which skyrocked over the years. I had a friend who I passed along our DVDs to work with her son who had autism and she said it literally saved her life and broadened her communication skills with her son and brought her family of four closer and they were able to communicate with signs and speaking at the same time so they could understand what her son needed. I eventually lost my hearing overnight when my hearing daughter was four years old. With her knowledge of some signs, she was able to sign what she needed when I asked her to “show” me what she was saying. It was a true blessing that I had showed her how to sign early on.
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I’m hard of hearing, too, and grew up using speech therapy, too. My first speech therapist was really insensitive to how difficult it was for me to try to make sounds I couldn’t hear. I ended up getting so extremely frustrated that I ran out of the room crying.
Fortunately, the speech therapists I had later were much nicer.
Now, my boyfriend has two children on the autism spectrum; they generally speak without the normal rise and fall of speech—without emotional nuances. That’s a lack of prosody, which is probably caused by not noticing non-verbal aspects of communication, and it makes my ability to understand them a lot harder. I had come to rely a great deal on hearing a normal rhythm in speech to understand people. Curiously, no one at the kids’ schools had ever addressed their lack of prosody, so they’ve never gotten any speech therapy for it. I don’t know if this is even something that speech and language therapists try to address.
Anyway, you’ve got my sympathy, Kate. Does the speech therapy actually help your son communicate better with you? If so, how?
Dana – It’s nice to have you join in the discussion. Your feedback has been shared with Kate!
Great story Kate, thank you! Parents face a ton of challenges, and your situation sounds truly challenging, unique, and rewarding.
Your message has been shared with Kate. 🙂
Thank you for all the comments!
Dana, I don’t remember Patrick’s speech therapist using the word “prosody”, but she has talked to me about the lack of intonation, the monotone, and working on changing that. When he projects more, it’s easier to understand him. So it may be the school IS working on that, but calling it by a different name. Or not calling it anything. It might be something to bring up at an IEP meeting. It’s definitely something for speech and language therapists to address. Hearing people have trouble hearing speech spoken without prosody too.
Speech therapy does help, but the emphasis is more on total communication rather than just verbal communication. When there’s a word I’ve finally figured out (either by luck or his father tells me what he’s saying), I let the speech therapist know, and she works on his enunciation of that word. This benefits me and everyone else too.
Nowadays, speech therapy is more than what you and I had. It encompasses OT (occupational therapy) and social skills. We spend a lot of time working out how to help Patrick communicate with more than just his family. He has a low-tech communication book he keeps in his jeans pocket with the icons for things he normally asks for and more. At our IEP meeting last week, we discussed using it more to help him express what he is feeling at the moment. (It’s next to impossible for him to tell us what he’s feeling: happy, pain, sad, etc.)
To the first commenter: I signed to my children from when they were born. He does show an interest in signing but as I said, the same processes that make it difficult for him to speak make it difficult for him to sign. When you have a child with autism, it’s more than just speaking or signing. I call my son “non-conversational”; he can verbalize some words, but one can’t carry on a conversation with him. He doesn’t initiate interactions, in general. He doesn’t “get” communication or conversations. For the most part, I’m just a vehicle to get him what he wants, be it pizza, or to go somewhere.
Thank you for all the comments!
First, I want to respond to the first commenter. Having a child with autism puts communication in a whole different ballpark, so to speak. I call my son “non-conversational”; that is, he can verbalize words, but carrying on a conversation is beyond him. He doesn’t “get” the whole idea of communication. He doesn’t initiate conversations. He doesn’t even understand what the question, “How are you?” means. He can only give out a canned, taught response to that question, and responds with “I’m fine,” even if he’s not, without understanding there are other ways to respond.
Dana, I haven’t heard Patrick’s speech therapists use the word “prosody”, but I have heard them talk about working to improve his intonation, so I think they ARE working on his prosody. It’s a good issue to bring up to speech and language therapists. I would bring it up at the IEP meetings. Hearing people have trouble understanding speech without the cues and intonations too.
Speech therapy has changed since you and I were younger. Speech therapy nowadays includes elements of — among others — OT (occupational therapy) and social skills. For Patrick, speech therapy does focus some on his verbal enunciations as well as the “total communication” picture. I have often asked the therapist to work on a specific word so I can understand it better.
I don’t know how I ended having two comments here! I wrote the first one and somehow “lost” it, so wrote another.
In any case, Dana, I talked to Patrick’s speech therapist today and asked about prosody, and she said that’s one of her current goals for Patrick. She agreed with me that a lot of SLPs probably work on prosody without using that particular word.
She also helped clarify for me WHY I have so much trouble understanding him. Partly his prosody, partly his apraxia making it difficult for him to make the motor movements needed for various sounds, and partly because in multi-syllabic words he tends to drop sounds and/or syllables. In addition, he doesn’t converse, so he will say a word or two out of nowhere, and I don’t get any of the context.