How I created a support booklet for local parents

Last year, I wrote a blog for the Limping Chicken (the number one Deaf blog in the UK) where I talked about how, when Lucas was diagnosed, I was completely unaware of the Deaf community. I’m certain that this lack of awareness was a huge contributing factor in the fear and sadness I felt when we found out Lucas was Deaf. Those early weeks and months post-diagnosis are so heavily ‘medicalised’, with appointments and interventions, and that means that the positive elements of being deaf get swept to the side, leaving you with the overriding feeling that this is something that needs to be ‘fixed’.

When I finished writing the blog, I wanted to do something to help. That’s where the idea for a parent booklet was born. It started off as a few scribbles in a notebook and grew into a 20-page colour booklet which is now being handed out to parents by our local audiology services at point of diagnosis.

Here’s a little overview of what’s inside in case you’d like to create something similar alongside your own audiology services. There’s a template at the end of this blog so you don’t have to start from scratch.

What’s inside?

• A little introduction from me remembering some of the emotions that I felt that day. I wanted to be a reminder for parents that however they’re feeling in that moment, it’s OK.
• What’s going to happen next and who you might meet (for example, consultants and paediatricians).
• An overview of the anatomy of the ear, different types of deafness and any other audiology jargon.
• Who the Sensory Support Team and Teachers of the Deaf (ToDs) are, including the local support group that they run every month.
• Charities and groups that can help support such as the National Deaf Children’s Society (NDCS), Elizabeth Foundation and local NDCS groups.
• Great sources of community and help that I have found on Instagram, Facebook and in books. There’s so much information out there that can be incredibly overwhelming and sometimes full of misinformation. These were the groups and people who I knew to be valuable and trusted.
• A section on how to get in touch with and involved with the local Deaf community here in Cambridge.
• A section about British Sign Language (BSL) and how can it help children to access language from an early age.
• Four stories from local parents of deaf children.
• Four stories from local Deaf adults.
• I also put in the ‘My Baby Has a Hearing Loss’ booklet from NDCS which also covers a range of other topics.

How it all came together

I was amazed at how smoothly everything came together, with lots of inputs from different people and organisations. There was overwhelming positivity from everyone and a desire to make it happen, and I think the result is testament to everyone’s willingness to help me. Here is a list of the people I spoke to for advice and input:

• Our Paediatric Audiology service at Addenbrooke’s hospital: I wanted to make sure they were happy to hand the booklet out to parents (which thankfully they were), and they were also incredibly helpful in ensuring that information about audiology and the onward referral pathway was accurate.
• The Cambridgeshire Deaf Association were really supportive of the initiative.
• The local Sensory Support Team (our ToDs and their colleagues) who gave some great advice and even joined me on a Zoom call to give their feedback on the first draft.
• Local Deaf people who have shared their experiences of being a Deaf adult.
• Local parents (both deaf and hearing) of deaf children and their experiences of raising them, including one of the NDCS bloggers, Nicky (mum to Isabelle and Jack). I also had some beautiful pictures of all the children in our local support group so that the booklet could be filled with happy, smiley faces of children who are absolutely thriving in their deafness.

Two final pieces of the puzzle

Finally, I asked for the help of two more people. I put a request out on our local Facebook page to see if anyone owned a printing company and would be happy to print 200 of the booklets for free. Incredibly, I had a response within the hour!

I then got in touch with an old colleague who now works for Twinings, and she sent me loads of teabags so I could put two in with the booklet; a cup of tea and a moment of calm for parents when they’ve just had some life changing news seemed like a nice idea.

Would you like to create one for your own audiology services?

I would love for these booklets to be available to more parents at point of diagnosis, full of local information. If you’d like to create your own version for your local area, then I’ve created a template for you to use which you can download here. If you click on the ‘notes’ icon in the bottom left, I’ve given a few bits of guidance there, as well as leaving comments on each page. All you need is a free Canva account (Canva is a free web-based design tool, and here’s a guide on how to use it).

The whole process was completely free to create. To start with, I would recommend getting in touch with your local paediatric audiology team and local ToD team to check that there’s nothing already being produced and go from there. Your local Children’s Hearing Services Working Group (CHSWG) is maybe the best place to start those conversations.

Hope you enjoy creating one for your county.