Although we personally don’t refer to deafness as a disability it can be seen as one and does come with its own challenges. Being a parent of a deaf child requires a little more time, patience and understanding of what your child may be going through.
First, coming to terms with your baby being diagnosed with hearing loss can be a highly emotional and stressful time. It can bring fears, questions and a sense of loss, especially if it comes out of no where, like it did for us and Harry. When we found out about Harry’s hearing loss, the first thing we did was turn to the internet. We headed straight for forums for parents of newly diagnosed deaf children to try and understand what this meant for us as a family. To say it helped would be an understatement. I immediately felt a huge sense of hope as I connected instantly to each person’s story. It was almost like we were part of an exclusive group.
In my area of the UK we have an incredible support system in place for deaf children. We were assigned a Teacher of the Deaf almost immediately after Harry’s diagnosis, and she came to visit us and answer all our anxious questions with such positivity.
Our Teacher of the Deaf will support Harry and visit him regularly until he finishes his education, so it was important to us that she understood our aims and goals for our little boy. In the beginning we didn’t really know what Harry’s options would be, but as soon as we found out he was eligible for cochlear implants she helped support us in our decision and advised us of what was ahead.
Our Teacher of the Deaf also advised us on what financial aids were available to us. In the beginning, Harry’s hearing loss impacted our free time and daily lives. We had weekly appointments to attend (some of them quite a distance away) so Disability Living Allowance helped fund travel expenses and allowed me to work part time so I could be at every appointment possible. See here for more information on DLA for children in the UK
Charities like the NDCS and CICS in the UK are also great sources of information for all types and level of hearing loss. They provide publications, magazines, forums and even trips out and weekends away for parents of deaf children, deaf adults and teens. In fact, we went on a weekend away with the NDCS for Parents of Newly Diagnosed Deaf Children and it was something that really helped us on our journey.
There is also a lot of information on how you can be there for your deaf child and how you can help them learn, which I know I will be using as Harry gets older and has his own set of questions.
Blogging has also helped me so so much! On my personal blog Lucie and the Bump was where I initially told “the world” that our baby had a hearing loss, and the positive response I had was overwhelming. I received tons of emails from deaf parents, hearing parents and even deaf teens, sharing their stories and words of advice. I still get emails today now asking for my advice and words of encouragement.
If you’ve stumbled across this post because you’re searching for answers after your little one has been diagnosed as deaf, then I hope I’ve helped in some way to show you there is so much help and support out there. Its OK to feel sad and angry but I promise it doesn’t last for long. With the support I’ve received I’ve managed to turn what could have been a sad and difficult experience into a positive and life changing one.
Lucie is a lifestyle and parenting blogger from Hampshire, UK. She is mummy to 2-year-old Harry who is profoundly deaf and a bilateral Advanced Bionics cochlear implant user. She loves drinking tea, cozy nights in with her family and pinning on Pinterest!
You can follow her here on Open Ears on a regular basis, or on her personal blog, Lucie and the Bump.