Being Deaf without having any other significant life situations affecting communication or everyday life activities is known as "vanilla Deaf." That is a pun having to do with the idea that the person is "plain Deaf" without any other complicating factors. This is similar to how "vanilla ice cream" is plain and uncomplicated.
But what do you do when you are an "Ice-cream Sundae"?!?
What do you do when in addition to being "d/Deaf" (physically and culturally Deaf) -- you also have physical or mental conditions that further complicate life?
The short answer is: You do the best you can with what you've got.
The long answer is....book length -- and there are books out there and college degrees out there dealing with the topic.
Here I'm simply going to share with you a bit of correspondence:
A teacher writes:
Dr. Bill,
I am a teacher (DHH-Hearing Specialist-TOD) and I recently moved to a very rural area of ___________.
I am very much like you, Hard of Hearing with a hearing threshold of 65 dB in my right ear and 75 dB in my left ear.
I wear binaural hearing aids that help me in most situations.
I have gone to your website many, many times and I have always found an answer to my problem or question.
Here's a new one.
I have a new student on my caseload who is quite a challenge. We recently held our annual IEP meeting and
the mother wants us to begin teaching her little girl sign language. Normally this would not present a problem.
However, this little 3-year old has only 4 fingers on each hand with very limited mobility. She is missing most bones
in her arm (and legs). Imagine your fingers attached at the elbow. That is the best explanation I can think of.
This little girl may never be able to use speech to communicate because of a cleft palette and a fused jaw.
For "mom/dad" I plan to have her place her knuckle at her chin and forehead and I will do the same as I model
the sign. I am concerned moving forward.
Any suggestions you have would be greatly appreciated.
Thank you!
______________ (Name on File)
Dear _________,
My daughter, Sarah, has Apert Syndrome (or "Aperts").
So her fingers don't have the typical joints. She also has "significant" speech issues, and is hard-of-hearing.
Thus we (her mom Belinda and I) end up "seriously" using "Total Communication" in (what I feel is the) originally intended approach: We do "everything" -- back and forth multiple times until we "figure it out." We end up combining speech (which is a real trip since we can't hear worth dip), signing (which is a game since Sarah can't do many of the handshapes), writing (which is "ok" now that she can write), texting (She texts like a boss! -- Her thumbs work very well), pointing, grabbing, showing, and quite often "re-stating" (using different words) when the words she is using just aren't making sense to our "Deaf" ears. Oh, and we also grab her older siblings and "recruit" them to interpret. (What's she saying?!? Oh! Thanks!)
You are going to end up creating a "home sign system" (loosely based on typical sign language) that will be likely only be understood by those closest to her. She will be combining the sounds that she "is" able to produce with the movements she "is" able to produce and that "product" -- combined with technology and the environment -- will "be" her language.
Google around and find a "communication board" and order it via your school district if you can (or Amazon if you must) --thus allowing her to point at what she wants/needs even if it isn't immediately around. The parents need one for home use as well. Also, a children's visual (picture) dictionary (thousands of common pictures) might be an excellent investment for both the home, the car, and the school.
Cordially,
- Dr. Bill
p.s. If it were me I'd seriously strive to seek out volunteers to work with her one-on-one. (Have volunteers go through a police background check, get the parents complete consent, and also be video monitored or in your presence at all times). Perhaps your local school could introduce a "peer mentoring" program wherein older, emotionally mature and compassionate students could volunteer to "mentor" (or gee, just plain "play with") high need students. Sort of pushing the boundaries there but hey, kids are going to end up playing together on the playground eventually.
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