Holly Kramer: I’ll never forget my daughter’s first sign

“It must have been so amazing when she finally said her first word! What was it?” 

“Ermmmm…” 

The truth is, I can’t remember my daughters first spoken word. But I’ll never forget her first sign.

Profoundly deaf from birth due to auditory neuropathy, but not diagnosed until the age of one, she was fitted with cochlear implants at 18 months.

The diagnosis was hard fought. I first took my daughter to the GP saying I didn’t think she could hear when she was eight months old.

After about a dozen hearing tests and a lot of frustration we finally got her diagnosis at 13 months, and that’s when we started to sign to her.

I often question why we didn’t start earlier, knowing as we did that she couldn’t hear, but yet to convince the professionals.

All of our head space during that time was taken up with the stress of the constant tests, the unknown, the worry. Plus, the fact that we’d never even met a deaf person before, we just had no idea how we should be communicating with her.

I distinctly remember when we were given her formal diagnosis, the audiologist said “of course, you must start signing with her right away. She’ll get very frustrated if you don’t”.

I devoured the NDCS family sign website, downloaded every BSL app I could find, and started contacting sign teachers immediately. From then on we signed everything to her, and it wasn’t long before she showed me she understood.

It was a Friday evening, we were waiting for my husband to come home, and I was shattered. I’d been labelling all her toys with signs for about a month, and I half-heartedly asked her “MUSIC DOG WHERE?” expecting nothing except maybe a grin.

When she grabbed her dancing dog and passed it to me I was so shocked, I felt like my heart was going to burst. A couple of days later at the park she signed dog! “What’s she doing? What’s… OH MY GOD! LOOK! A DOG! SHE’S SIGNING DOG!!!”

Her signing went from strength to strength, even with two complete beginners teaching her. Even though she had no access to sound, nor sign, for the first year of her life.

She’s a brilliant communicator. But a strong support network and access to the Deaf community were absolutely imperative to this.

I first went along to an event at Genie Networks (http://www.genienetworks.org.uk), a d/Deaf charity in Manchester, the day after her diagnosis.

I met other deaf children and adults, got advice that I so desperately needed, and most memorably was told by numerous deaf adults “she will be ok”. On my way home I phoned my husband and said “we really are all going to be ok!”

Cuts to the charities and services we relied so heavily on at the time of her diagnosis will have a huge impact on newly-diagnosed deaf children and babies, as well as their parents.

I don’t think we would have coped without the support we got. The advice we received from parents of deaf children, from deaf adults and from volunteers was absolutely invaluable.

As central government slashes support for SEND these charities and support networks become even more important. I can’t overstate just how much of an impact Genie made to our family. 

Now my daughter is three, and she’s thriving. She’s a happy and sociable little girl, and now a big sister. She signs well, but increasingly choses to speak rather than sign.

Her speech is amazing, and on balance, I am glad we made the decision to give her CIs. They are not a miracle cure, and I could talk all day about the problems that she encounters, not least a complete lack of deaf awareness in the hearing world, which I’m sure, before having a deaf child, I was complicit in.

My husband and I are about to begin level 3 BSL, and have loved learning, making friends in the deaf community, and signing with our children.

We are lucky we have had the means to learn, as well as having access to a brilliant social enterprise, Sign How (https://www.signhow.co.uk), which aims to improve access for D/deaf people through improved BSL communication and awareness. Sign How has not only taught us, but supported us as a family.

If I could give any advice to hearing parents of newly diagnosed children it would be this: get advice from everyone you possibly can, take it, digest it, and never stop questioning it. It’s all about working out what is right for your family, and there’s no catch all answer.

Get all the support you can find, and fight for it. Be strong, and take it easy on yourself.