National Siblings Day: Ffion-Hâf and Macsen

Hi! Hello! I’m Kristy. I am the mother of Macsen (16 years old) and Ffion Haf (13 years old). Macsen is hearing, and Ffion Haf is deaf. We were shocked and in disbelief when we learned that Ffion Haf is profoundly deaf. Macsen accepted his sister’s profound deafness from the beginning. We learned sign language as a family, and Macsen would sign to his sister using flash cards for visuals. Other times, he’d take her hand and show her the things he wanted to see. It was so heartwarming to see them together.

Their bond became stronger as they got older. It wasn’t easy to decide to put Ffion Haf in a mainstream setting, but knowing that her brother was with her was comforting. He was and still is her first contact if the batteries in her implants fail, even though her teachers are aware of what to do. He is a big help to her, and she relies on him.

Interview with Macsen

What is it like to have a profoundly deaf sister?

She copes well with her implant. She’s my sister to me! When she wears her implant less often on weekends, I am more aware that she is deaf. We have to sign for her.

Do you remember when I told you she was deaf?

No, I do not remember you telling me she was deaf. We accepted her as she was and embraced the fact that she was deaf. It was just what I knew. Seeing you sign with her became “normal.”

How can you contact her?

Both sign and spoken languages are used.

How did you learn how to sign?

I remember that you kept a lot of flashcards in your kitchen, in the living room, in the bedrooms, and even in the bathroom. It was impossible not to learn! You also taught me British Sign Language.

What is the most difficult part of having a sister who’s deaf?

It’s important to include her in all activities. People tend to assume things, which is not the case. She has been in the hospital for a lot of time. When I was younger, it was hard not to see her and my mother for several weeks. It’s been easier recently because I have been focusing on my schoolwork, but it is still difficult. She gets a lot of attention and also gets away with quite a bit!

What do your friends think? They have asked questions. Have they asked questions?

The questions are a bit confusing. They want to know if she is deaf, what she does, and how it feels. It’s frustrating to have to explain that she is profoundly deaf but can still hear with the cochlear implants. Many of my friends also asked me what the cochlear implants were – and they were all surprised. But they love her and are very supportive! She loves it when people give her high fives at school!

Three words to describe your sister!

Enjoy loud and happy fun!

Are you worried about her future?

Sometimes. She can only hear one side of the room now since she recently had an implant removed. I wonder who will be her advocate in the future because I know that you are working hard to raise awareness about deafness. We still need to make progress towards equality, access, and inclusivity for deaf individuals.

The conclusion of the article is:

Macsen was always a protective and supportive older brother for Ffion Haf. Their bond is unique, and I hope it will last for a lifetime. He is her greatest supporter, advocate, and protector. We are all very proud of him for being a SODA.

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