Parenting a Deaf Child can be a Minefield

Letter to the Editor, SLFirst Magazine

Dear Editor

Please accept my apology for sending an anonymous letter, but as the topic of my letter can be emotive, I don't want to do anything that might threaten my daughter's education.

I am the mother of a 5 years old little girl who is Deaf in both ears. Both my husband and I and our two other children are hearing. In fact we don't have anyone else within the close family who are Deaf. My daughter was found to be deaf when she was 3 months old. We are not sure why.

With no knowledge of deafness, I feel we have been fumbling around trying desperately to find out information and to do everything we can for our little girl, but I really worry about the information being provided to us and the decisions we have been making along the way.

My daughter wears two hearing aids which I am told give her some sound, but I don't think it is anything too useful to her, just some noise really. When we were told she was Deaf, it was delivered as something akin to a death message. From that day on I have been researching and researching and asking 'professionals' for advice, information and guidance. One of the first things I established is that there is a Deaf language, British Sign Language, but when I asked her audiologist about that, I was told that it would not be in her best interest as it might affect her development of speech.

I must confess to being a little unconvinced as I could not find any research on-line or at my local library that said that was the case. If anything, the research pointed to the opposite, the early acquisition of language, including BSL, being beneficial to later learning and development of speech.

Our thoughts as a family were that we should try and keep as many options open as a family as we could, so I started to look for sign language courses for the whole family. I contacted anyone and everyone I could to try and find something, but there was nothing apart from taking up a formal (paid for) course. I was surprised that none of the national Deaf charities could help me, with some of my contacts seeming to be met with resistance about BSL also.

We were also invited to make a decision about my daughter being given Cochlear Implants. Gosh that was a tough one. So tough actually that we are still wondering what to do for the best. Again, I was surprised how little information is out there for parents like us to help us make that decision.

Looking at discussions about the pros and cons of cochlear implants on social media, I am even more confused than ever and really don't know what to do. It seems a lot of Deaf people who use sign language don't like Cochlear Implants and don't mix very much with people who have them. There also seems to be lots of children with Cochlear Implants who don't use sign language at all. I know this sounds daft, but it is as though Deaf and Deaf with Cochlear Implants are seen as completely different, which doesn't really make sense.

Troubled and confused, feeling helpless at times, I must confess that when my little girl started school, I hoped to get some clarity over what we should be doing. It actually turned out to be the complete opposite. She is in a special unit for deaf children, and she now has a Teacher of the Deaf. Still wondering about sign language and still liking the idea of my daughter being able to converse with other deaf people as she grows older, I asked her Teacher of the Deaf for her advice. Emphatically, she told me that my daughter should not be exposed to sign language. I asked her why and she also said that it will affect her learning of speech. I told her that my research had not supported that view and asked her where I could find the information she was referring too. Sadly, the response I had to that was rather angry and aggressive with the teacher asking me if I was questioning her expertise.

I reassured her that I was not, but simply trying to source information for myself so that I could ensure I was making the right decisions for my daughter. I was told to do what I wanted outside school, but within school my daughter would be discouraged from using sign language if she started to learn it. Taken aback, I went home in tears.

Currently, my daughter has very little speech, she has virtually no friends in school and often seems withdrawn. She is prone to angry outbursts and gets very frustrated if she is trying to tell us something but we can't understand. Her written English is miles behind where my other children were at the same age, despite me giving a lot more of my time to try and help her. I am really worried about how she is going to get on in school and have no idea what I need to do to help her catch up. I completely understand her frustration.

We have started to use our own signs in the house to help us communicate together, and I really do wish I had got her to a sign language course when she was younger. I hope it's not too late for her but I am going to pay for us all to learn BSL now because I just don't see her developing properly without it. We need to be able to communicate and she has been brilliant at learning and understanding the signs we have invented in the house. I think it will help us all, and I certainly hope it will help her when she is older and when she meets other deaf people.

Reading articles about education in the SLFirst Magazine have been really useful and following up on them, I've read about the academic achievements of deaf children. It really is a worry and I'm shocked that the academic achievements can be so poor in comparison to the mainstream and yet nobody seems to be doing anything about it. Talking to other parents of deaf children at the school, it seems that most of them are completely unaware that most deaf children under achieve at school. Lots of them have raised concerns about the progress of their children with the Teacher of the Deaf, but that they have been told it is normal for deaf kids to be slow and fall behind other children. It is so sad that this has to be the case just because these children are deaf.

As a family, this is really difficult, but rather than be told what to do by others, we have agreed to make some decisions that help our daughter. Even if we agree to her having cochlear implants, she is deaf, she will always be deaf and so we want her to have a deaf identity. That means we will all be learning sign language. When she is old enough she can make her decisions, but she needs to be able to chat to others who understand what she is thinking and going through. If she does have cochlear implants I hope other deaf people will still accept her and make her feel welcome.

This is so difficult for us, it is like being in a huge maze and taking lots of wrong turns as you look for the way out. I just hope for my little girl's sake that things improve for her. Her happiness means everything to us. I know that her Teacher of the Deaf is probably well meaning, but if there is one thing I have definitely learned, it is that I need to continue questioning the advice we get and the decisions that are made 'in the best interests' of my daughter. Sadly, opinions are not based on the evidence and rarely take into account the social well-being and learning of my daughter. Like any parents I will fight tooth and nail for my children, and I will certainly be doing that for my beautiful little girl.

PS - Thank you, your magazine helps