Advocating for your deaf childPublished Date: 02 Dec 2021
As the parent of a deaf child, you have to be their advocate in almost every situation, whether that’s an appointment with audiology, a birthday party or a new sports club. You have to walk into those environments ready to say, “This is what my child needs here.” And when you see things going wrong, you need to step in. Hearing aid moulds haven’t arrived or are a bad fit, the instructor isn’t looking at your child when they're speaking, the radio aid is on mute, everyone is talking over one another….
Some people find this harder than others. I'm one of those people. I'm the parent who has to build themselves up to make a phone call to audiology or who rewrites that email to school 50 times because I don’t want it to sound too demanding.
Some people find it easy to complain. I used to be one of those people. As a young girl, I had zero shame standing up for myself. In fact, I loved it. And I would stand up for others too. Injustice was my crusade, and I relished the opportunity for people to hear my voice. I remember walking out of a busy McDonalds with a friend, who suddenly realised they'd forgotten part of her order. Her response was: “Never mind, it’s fine.” Me? I grabbed the bag, marched up to the counter like I was Erin Brockovich and demanded the rest of the order. In my young mind it was clear – my friend had paid for that food and she was going to get it. However, several different factors have meant that through time, I’ve become more shy and awkward about speaking out. I miss my younger self, because now is the time when my daughter needs that confidence the most.
I expect some other parents may be in the same boat. For those who may be starting on this journey and are a little like me, I wanted to share some things I have found useful:
- You don’t have to go in guns blazing. Nudging or reminding people kindly about what your child needs goes a long way. Easier said than done sometimes, but trust me, you will feel better about yourself, and most of the time the instructor or teacher is grateful for the reminder. We're all learning.
- Nip it in the bud as quickly as you can. At the beginning I found myself saying: “Oh, I’ll just see if it gets better next week.” But that would normally result in resentment forming, and the more I left it, the more likely I was to go in guns blazing. Don’t wait too long to bring things up and offer tips on ways your child may be supported better.
- Share the load. Make sure it’s not always you doing the advocating. Ask for support from your spouse, an auntie, friend, sibling, grandparent. My son is great at reminding people if my daughter can’t hear!
- Make a personal passport for your child. The National Deaf Children’s Society are excellent, and they have a template for a personal passport you can use to tell teachers, instructors and other parents about your child’s hearing loss, including the support they need. They have them for early years, primary and secondary settings, and it really helps me go through things without feeling rushed or flustered, whilst being able to leave a copy for people to read and refer to.
- It’s ok to hate it. You are not a bad parent for not wanting to be the advocate all the time. You are likely to have people say: “Don’t worry about doing it! Stand up for your child! You shouldn’t feel bad!” But unless they have a special educational needs (SEN) child themselves, they will never know how relentless it can feel sometimes. It is hard. You are doing a great job.
- You are the most valuable asset your child can have. Remember why you are doing it and let them witness you standing up for them. Eventually they will start to advocate for themselves, and that is one of the biggest rewards you will ever receive.