Gemma Jones: Being able to sign with your deaf child shouldn’t depend on how wealthy you are

I have to start with a disclaimer; a warning, an apology of sorts for how emotional this subject makes me.

Writing this on my laptop with my Deaf son next to me frantically signing “What” pointing to my laptop, because my 4 year old who lost his entire hearing and speech in the space of a year desperately wants to know what I am doing, why I am doing it, why is it important and all other questions that come into a 4 year-old’s mind.

For most parents it’s as simple as carrying on typing while verbally chatting away as Mummy writes the article about learning sign language and with that information sharing comes a whole learning experience, how to have a conversation, taking turns, listening as well as the actual knowledge of the words such as what an article is or how the words get on the screen of the lap top.

What I am explaining is that when you can talk to your child you are constantly teaching them without knowing it, lots of key bits of knowledge they need in order to express themselves, learn about the world and their place in it.

What happens when that basic communication and a fundamental tool for growth and development has a price tag on it?

What if in order to be able to say anything to your child you have to pay someone to be privileged to have the knowledge you need in order to do so?

Well that is my experience right now, I can’t answer my sons “what” signing and constant pointing as I am not one of those with disposable income, I am not someone with the money to be able to pay to “level up” on my British Sign Language enough to hold a full  conversation with my son to even begin to explain this simple task of typing a piece of work.

Our everyday life communication in this house is a mixture of BSL level 1, pointing, lip reading, photos and just pure guess work at times.

We as parents then have the inevitable feelings of total failure at the most basic of our sons human right which is to be able to communicate with us.

Did you know that level 2 would cost myself and my partner over £1000 for us to learn how to say more than a few words to him and then to go on to level 3 to hold a full conversation with him is over £3,500.

To put that into perspective for families who are oral, can you imagine just for a minute that you give birth to your beautiful child and have all the exciting thoughts parents have about what the first word will be, what will their favourite bedtime story be or their favourite TV show but you cant experience any of that until you pay someone for the privilege to speak the same language as your child, no reading books, no laughing at the latest childrens characters on TV together and definitely no learning numbers, and letters without paying money.

How does that feel?

Do you feel a valued member of society with the same rights as hearing families or do you feel, as we do, completely discriminated against that we don’t earn enough to be able to talk to my son.

Isn’t it about time we as a country started helping those who cannot communicate with their families through strokes, deafness, brain injuries to name just a few of the reasons why you may find yourselves in our situation.

Do you not agree that when communication is lost families should be given the help they so desperately need to learn how to communicate with their loved one? Where is the help in times of these types of crisis?

I believe BSL teachers are not given the resources, respect or platforms to help all those that need them most and we are leaving behind a generation of families who will grow up feeling isolation and pure frustration at not having enough money to pay bills and to pay to learn how to communicate.

My son is just as important as any hearing child but we are not as rich as we need to be to give him a basic need in life, COMMUNICATION.

Gemma says: “I am a mother of a 4 year old with Auditory Neuropathy Spectrum Disorder and suspected Ushers syndrome. My son lost his hearing and speech last year out of the blue and since then we as a family have been trying to learn BSL to communicate with him. We live in a rural Welsh community and all love being outside in the beautiful countryside. I am trying to raise awareness and process the journey we are having through my blog on Facebook – “My Deaf son and me.”