Today Chris and I were on our first parent panel. We were asked to come to a regional meeting that the State Dept of Ed sponsors for those who are service providers for children with hearing loss. There were people in the room from all over eastern Pennsylvania. Also on the panel was another mother of a kid from PSD; her daughter was in E's class last year. And a mother whose kid was in an oral program. All three kids represented are going into Kindergarten next year. It was a good experience. I hope we were able to be helpful.
I thought I would list the questions and the answers that we prepared. We didn't really follow them as a script, but it was helpful to write out something to organize our thoughts. And also, the usual caveats...this is what is good for our family, but I think there are some general thoughts that anyone going down any deaf educational path could find some benefit from.
1. Please share how the news of your child’s diagnosis was shared with you and what information and resources were given to you at the time of diagnosis.
We came to understanding of Ellis's diagnosis gradually. It took us awhile to understand what the "referred" meant after he failed his newborn hearing screen. We had an appointment with an audiologist at Temple Children's that was not helpful at all when E was 2 months. When E had a "no response" on his ABR, he said that didn't tell him how much hearing loss that he had. This audiologist only told us that E had "some hearing loss" and gave us an Early Intervention number to call for our county. It wasn't until E was around 7 months old and we transferred to CHOP did we get a clear diagnosis of profound sensorineural bilateral hearing loss. And we were already happily enrolled in an EI program. The audiologist at CHOP introduced us to hearing aids and was the first to suggest that he may be a candidate for a cochlear implant.
2. Describe your and your family’s feelings at the time of diagnosis and what type of support (if any) that you found helpful during this time.
I think it did help that we came to a gradual understanding of his hearing loss. We had no defining, black-and-white moments where a diagnosis was handed to us, the unsuspecting parents. But overall we were actually very calm and accepting. To us it didn't seem like a tragedy. All we saw was a healthy, happy baby, and walking through a children's hospital where babies are fighting for their lives really puts things into perspective. I think the Early Intervention support we received from PSD was the most helpful. Our home visitor became a vital part of our life those first couple of years, and we still keep in touch with her.
3. How was the Communication Opportunities shared with you and your family? Do you believe that all options were equally available to you and presented to you in an unbiased manner?
I do believe we were presented with all the options in a very fair way. When I first made the call to Montgomery County's Early Intervention, I was asked whether or not I wanted to sign. At the time, I didn't know not-signing was an option. I just assumed that all deaf people signed. We all remember Linda from Sesame Street, right? When presented with the question, I did ask for some clarification, and the woman gave me brief descriptions of the programs at Clarke and at PSD. I remember jotting down in my notes that she seemed to be nudging me towards Clarke. But still by the end of that conversation I couldn't fathom a reality of not-signing.
When we began our Early Intervention with a teacher of the deaf from PSD, one of the first things she did was to make sure we truly understood all our options. We had a tour of Clarke [oral school], of PSD. She gave us things to read. We really felt like we could ask her anything and make any decision we felt comfortable making.
4. When and how did you come to a decision of what communication option(s) you were going to use and do you believe you had access to qualified professionals in your choice of communication?
From the first day when hearing loss was even brought to the table, our commitment to Ellis has been that he have as much access to everything that might help him. We learned that if he is to have 100% access, that ASL must be available to him, and that he must continue to learn it as well as we would expect a hearing kid to speak. But we also want to give him the benefit of a cochlear implant. His right ear was implanted when he was 2yo and speech therapy and a high auditory access classroom at PSD are part of his IEP, in addition to instruction in ASL. In order to be truly bilingual, he must be allowed to develop to the maximum of his potential in BOTH languages. So that he may easily choose how he moves through his adult life. For us, we felt like we were limiting his life choices if we chose only one mode of communication. In our house, learning another language is par for the course, and ASL is no different.
I do think we were given excellent resources and opportunities. The Mont Co EI and then preschool division bent over backwards to make sure we had just the IFSP/IEP we needed for our bilingual approach. Even though it was a little outside the box for them. PSD also offered us a lot of extra opportunities that weren't "on the books," such as a Deaf Mentor program and the shared reading Program, where a Deaf adult would come into our home and help us learn how to read children's books to Ellis in ASL.
5. As parents of children who are deaf or hard of hearing, we need to learn quickly how to embed language learning into our home environments. What tools/skills did you and your family learn during the early intervention years to support your child’s language learning at home and in their community?
ASL was crucial. Ellis didn't get a CI until he was 2yo. Before then the hearing aid he had didn't give him an language benefit. If we hadn't signed, he would've had no access to language in those crucial 2 years. Because of signing, we have seamless communication if the technology fails. There was actually a time when the processor on his CI and his backup CI both failed simultaneously. It was crazy and it took a long time to figure out. And then they have extra time getting a replacement with a processor, because it has to be programmed.
It's great to have more than one modality for language if technology fails. There is always language, be it ASL or spoken English. We never lose. It's always win. Language is the goal.
6. Please share with us any advise you believe would be helpful to another family who will be on this journey after you.
Another mother brought up the good point, that it's up to the parent to be an expert in everything at the IEP meeting. To really understand what's going on so as to be a good advocate for the child. And then I thought one step further, it's great to do this for the sake of your child. And hopefully it will show them how they can gradually take ownership of their own advocacy, so that they can stand up for what they need.
But we brought to the table to answer this question was this: Talk to Deaf adults. They're lovely people, and they want to tell you that being Deaf doesn't limit them from doing the things they want to do. They want to show that being deaf isn't scary. No matter which mode of communication of avenue of education you choose, there will always be deaf adults on the other side. Talk to them. They will give you a more wholistic picture of your child than just the speech banana your audiologist gives.
