National Siblings Day: Ffion-Hâf and Macsen

Hi! I’m Kristy, mum to Macsen (16) and Ffion-Hâf (13). Macsen is hearing and Ffion-Hâf is deaf. When we found out that Ffion-Hâf was profoundly deaf, like so many other families, we were in a state of shock and disbelief. But Macsen embraced his sister’s deafness right from the start. As a family, we learnt sign language and we would often find him signing to his little sister – using flash cards to help with the visuals. On other occasions, he would take his sister’s hand and physically show her what he wanted her to see. It just seemed so natural for him, and it was heart-warming to watch them together.

As they grew older, their bond grew even more. Deciding to place Ffion-Hâf in a mainstream school was an extremely difficult decision to make, but knowing her brother was there was a great comfort. If the batteries on her implants failed, he was (and still is) her first point of contact even though her teachers know what to do! She relies heavily on him, and he has a sense of pride knowing that he’s able to help and communicate with his sister.

Interview with Macsen

What’s it like having a sister who’s profoundly deaf?

A lot of the time I don’t think of her as being profoundly deaf because she copes so well with her implant. To me, she’s just my sister! On weekends though, when she doesn’t wear her implant as often, I become more aware of the fact that she’s deaf because we have to sign with her.

Do you remember me telling you that she was deaf?

No, I don’t recall a time you told me that she was deaf. It was just who she was, and we just embraced it as a family. I guess it was all I knew – seeing you sign with her became ‘normal’.

How do you communicate with her?

We speak and use sign language.

How did you learn to sign?

I remember you had loads of flash cards all over the house – in the kitchen, living room, bedrooms and in the bathroom! It was hard not to learn! Plus, I learnt from you as you went to British Sign Language (BSL) classes.

What’s the hardest part having a deaf sister?

I think it’s making sure that she’s included in everything. Sometimes, especially at big family or social gatherings, people can forget the basics: that they need to face her when speaking to her, the background noise needs to be reduced, you have to repeat things and make sure she understands – people assume and they shouldn’t. Also, she has spent loads of time in hospital – when I was young, that was tough because I couldn’t see you both for weeks at a time. More recently, it hasn’t been so bad because I’ve just been concentrating on my school work, but it’s still hard. She does get a lot of attention and gets away with a lot too!

What are your friends’ thoughts? Have they asked questions? Are they supportive?

They ask things like ‘Will she be able to drive?’ and I’m like, ‘Yeah, she’s just deaf; she can do anything I can.’ They’ve also asked if she can hear anything, why she’s deaf and what it’s like. They don’t really get that she’s profoundly deaf but can hear through the cochlear implant, so I do have to repeat myself a lot which is frustrating. Lots of my friends have asked what the cochlear implant is too – they’re all surprised when I tell them, but they are great and think a lot of her! They always give her a high five when they see her in school which she loves!

Describe you sister in three words!

Fun, loud and happy!

Do you worry about her future?

Sometimes. Since she has recently had one of implants removed, I worry about her in school because she can only hear from one side now. I do wonder about who will advocate for her in the future because I know you work hard at trying to raise deaf awareness because equality, access and inclusion for deaf people is still something we need to work towards.

Conclusion

Macsen has always been a very protective and supportive big brother to Ffion-Hâf. They have a unique bond which I hope will last a life-time. He is her biggest supporter, protector and advocate and we’re all extremely proud of him as a SODA (Sibling of a Deaf Child).

Final thought from Ffion-Hâf

Macsen is good big brother, but he can be annoying sometimes! He does look out for me, and I know I can go to him if I need to. If my implant doesn’t work in school, I know I’ve got him which is good because nobody else would be able to sign to me, but Macsen can.