Wednesday, February 11, 2015

Public Interactions with my Minimally Verbal Child

Jaycee says less than 20 words due to severe childhood apraxia of speech (CAS) and her low muscle tone associated with Down syndrome. She has a small amount of consonant sounds she can produce and can usually only put very simple word forms together. For example: mama, dada, oh for no, hot, bubba, papa, "ss" for please, etc. She's trying more words than ever before but it is extremely hard for her to produce all consonant sounds and to sequence those sounds into words.

Interacting with the public when you can barely speak is tricky. These are common experiences I have with Jaycee while we are in public.

1. When a stranger asks Jaycee a question and she doesn't respond (because she can't), they ask me if she's shy. Sometimes I say yes and walk away. Other times I explain why she can't answer.

2. When Jaycee doesn't respond to a question asked by someone unfamiliar with her, they will make a comment like, "Aren't you going to talk to me?"  No, she can't talk to anyone. She only says a few words!

3. When people ask her what her name is, I usually have to answer for her. She does have a communication device but doesn't usually tell people her name with it.

4. When people see her signing, they ask me if she's deaf. No. Why can't she speak if she can hear? My answer will vary in length depending on who is asking and how interested they really seem to be on this subject.

5. When Jaycee does say a familiar word, people act as if they have witnessed a miracle and make a big deal out of a word I have heard her say a thousand times.

6. Children who approach her on a playground may say things like, "She can't even talk!" Some will ask me, "Can she talk?" She can say a few words but her mouth just doesn't work like yours. She uses sign language and can communicate other ways though. Then I usually teach them a sign or interpret Jaycee's gestures for them.

7. At restaurants, I generally have to order for Jaycee. We do try to have her use her communication device when the food is on her device and if she will cooperate. Sometimes, she'll order pizza at a fast food hamburger joint, so that's when I have to jump in.

This is just a few encounters for you to get an idea of what it's like for Jaycee and I when we go out and about. If you are a teacher or a professional, then I hope this helps you understand what some of your families deal with regularly.

Jaycee signing "deer," her name for her cousin Gabby. Signing is one of the many ways she communicates daily.

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