Since we discovered Evie’s hearing loss back in April, we’ve been trying to figure out the best approach to teaching her language. These early years are so important for this developmental milestone, so we’ve been on a bit of a clock. We initially started with American Sign Language (ASL) because it is the most widely used in the deaf community, but then in July we discovered that in addition to her hearing loss, she also has unilateral auditory neuropathy. As we searched for information regarding that new challenge, Cued Speech (CS) was suggested as the best option for Evie. Still there are others that suggested we use Signed Exact English (SEE). It’s been overwhelming to say the least and, because Evie has so many other issues, I’ve not been able to devote as much time as I’d like to researching these different options. I thought I’d share with you what I have discovered though, so you can better understand our struggle.
First we have the go-to option: ASL. This is the official language of the Deaf community (read more on the Deaf culture here). ASL is its own language with its own structure and grammar completely separate from the English language. If Evie were to be a part of the Deaf community, she would need to know ASL, but there’s the dilemma. Will Evie ever be a part of the Deaf community? It’s not really a clear answer for us. Her hearing loss is not that bad in the grand scheme of things and the auditory neuropathy adds a whole new element. Also, it seems that those with additional disabilities beyond being deaf, do not associate themselves with the Deaf community very often, sometimes by choice, other times by exclusion. I don’t want to push Evie to learn the language of a specific culture only to discover that she is not included. She then won’t be a part of the Deaf or hearing world.
And then there’s the time issue. ASL has a sign for every different word. With all of Evie’s other issues, I have very little hope of us as a family being able to devote the necessary time to learning hundreds and thousands of different signs. Due to Evie’s fragile health, we cannot attend classes multiple times a week. There is not a deaf preschool anywhere near us and the Iowa School for the Deaf is three hours away.
SEE also uses signs but instead of being its own language, it visually depicts English. The thought behind this one is that it will help children with literacy as they will not need to learn to read in a different language (ASL has no writing system so anything that needs to be written is written in English structure). It is also easier for hearing parents as they can sign as they speak. It’s still the time issue, though. Do we, as a family, have the time and energy to devote to learning all the signs that Evie needs? And can we do it fast enough that she’s not missing out on these critical language acquisition years?
When Cued Speech was first suggested, I dismissed it rather quickly. It’s used by only a very very small minority in the US and many in the Deaf community have a certain degree of hostility towards it. As I learned more about Evie’s auditory neuropathy, though, the benefits started to make more sense. Cued Speech uses 8 symbols and placements of those symbols in combination with lip reading to visually depict the sounds of the English language. So ASL is its own language, SEE visually depicts the words and structure of English, and CS visually depicts the sounds of English. I hope that’s clear!
What is really appealing about CS is that we could learn the signs rather quickly and then just practice, practice, practice. I wouldn’t need to be constantly looking signs up to be able to communicate with my daughter. This would also greatly increase her ability to lip read. Since her hearing is constantly going in and out with the auditory neuropathy this will be a vital skill. She may start a conversation hearing the other person fine, but then suddenly not be able to hear them anymore. Her ability to lip read will allow her to continue the conversation instead of stopping and transitioning to sign.
More than likely we will not be able to rely just on a signing technique/language, though. Many CHARGE parents find they also need to add in Augmentative Communication devices or apps. There are a variety of options, but Evie would be able to point at pictures and then it would say the words for her.
Really, Evie is a unique case. There is absolutely no other child with her exact issues. No other family that had the exact same decisions to make. No way to see how it turned out for another family. We have a wonderful CHARGE support network where I have been able to gain many insights, but as there is no typical CHARGE child (each one has their own issues), there is no set path for a CHARGE child.
We’ll probably end up doing a combination of different approaches and then just follow Evie’s lead. That’s all any parent can do, right?
Next week we see her audiologist again to discuss a few different things and hopefully make some decisions. I’ll keep you updated!
And just because my girls are so darn cute, here’s a bonus picture:
All That Hath Life and Breath 
Hi, I am a UK Charge mum and also blog. We had a days training in cued speech a few months ago and are also learning BSL as our son is profoundly Deaf with no hearing at all. The cued speech association are not far from where we live. They told us cueing opens up the English language to 90% whilst lip reading only gives 30% pretty amazing statistics. Good luck to you with learning!
I know it seems big and overwhelming, but there is no law that says you have to sick with what you decide, or that you can’t choose more than one. Lip reading will serve her well as she gets older, and she/you might find it useful to have signs at your fingertips at some point, too. 🙂