Jacky Rooney-Nelson: How I feel about my deaf daughter starting school

Posted on September 7, 2015

Jacky Rooney-Nelson lives with her family: her husband, her 8 year old son, who is hearing, and her 4-year-old daughter, who was born deaf.

The family enjoy being outdoors as much as possible accompanied with their menagerie of animals (2 cats, a dog and fish!), meaning Jacky enjoys a persistently muddy and untidy lifestyle.

She works nights as an Estate Manager in an assisted living environment – which allows her to be around in the day to spend time with the children… creating mess and memories – which she loves to do!

I knew the day would come. I had not been dreading it, as such, but it certainly sets the butterflies off in my tummy when I think about her walking into her new classroom for her first day at school.

I think the school is great – my hearing son goes there and loves it. But I still have concerns over whether they will be able to meet the needs of my deaf child – in fact, as I think about that school door closing for the first time, I am close to tears just typing this.

I’m sure many parents of deaf children will have the same questions running through their head; have I done enough to prepare her, will they understand her, will she understand them, will they remember she is deaf (she is so good at nodding in all the right places), will the teachers remind the other children that she is deaf, will the other children be patient and kind and help her?

Jacky Roony-Nelson and her daughterWill she be lonely? Will they do what they said they would do in the absence of an Education, Health and Care Plan (Assessment pending)? The internal dialogue races on…

My daughter, S, has bilateral Sensorineural Deafness – a moderate loss but due to conductive overlay (glue ear) she can spend a great deal of the year at a moderate/severe loss. And I, as her Mum, know her nuances.

I know that little twitch in her eyebrow when she can’t hear or can’t understand or, indeed, if the sound is too intrusive and her hearing aids need to be turned down (she has hyperacusis which is a hypersensitivity to sounds that are generally not an issue to others).

I can spot the confusion in her eyes – ever so slightly – and I can then swoop in and pick up a thread of conversation and bring her back into it – but once she enters that classroom I can’t help her anymore and, at the moment, that scares me so much.

Starting school is a big step for any child. I’ve been fortunate to have had a great deal of advice from a number of places and the National Deaf Children’s Society (NDCS) has given me some brilliant ideas which I wanted to share.

As a family, we have always been very open about S’s Deafness. We’ve tried to explain it in terms of how others may need glasses or wheelchairs – that it is an aid to enable her to access sound available to her. S is what I would consider “Deaf Proud” but there have been times since starting preschool, where she has reported feeling lonely and left out (during a particularly lengthy bout of glue ear on top of her sensorineural loss).

Subsequently she told me that she did not want to be deaf. We do a lot of talking and “emotional work” around how she feels. We ask questions directly about how being unable to hear in certain situations has made her feel.

She told me recently that a friend’s party was very difficult for her – she was unable to connect with the other children (one of whom walked off frustrated after trying to make herself understood in the noise that is a children’s party). Instead of letting this knock her confidence, we took it as an opportunity to empower S and discuss strategies for the future. And we’ve taken a similar approach to starting school.

S and I have spent time this holiday role playing – we take turns being the teacher and student. Each time, I am encouraging her to put her hand up and say “I can’t hear you” or “Please turn my hearing aids down”.

We make this into a fun activity with lots of silliness and laughter but it is getting the message across that she must take responsibility for her hearing aids and ask for help. I have taught her how to take her aids out and to put them in – she is used to handling them now and likes to help me change batteries and puff them out.

Again, we’ve made it into something fun – not another chore. It’s helped S take ownership of her aids….next step is the radio mic which we’ve spent a lot of the summer using so S can get used to it.

I’ve found using play particularly effective for S, so we spent some time this summer putting together a little pack consisting of play hearing aids (old ones sewn on a headband and a big pair for teddies!), a couple books such as “Dachys Deaf”, laminated signs hand drawn by a lovely friend with Deaf Awareness tips and a laminated sign from NDCS with the British fingerspelling alphabet on it to stick up on the classroom wall.

These can all be kept in the classroom for the children to play with and to be used as a resource as needed. S loved doing this and is very proud of the fact that she will be able to explain things to her new friends.

We spent time looking at the ear and she understands (age appropriately) that her cochlear does not work as well as mine. It’s been brilliant to find her explaining to people, in the most random places, that “I am deaf because my cochlear does not work so well”! I want her to be proud of her difference and not hide it – she has no reason to hide it.

There has been great support from outside sources too. As S came to the end of her time at preschool – she spent a year and a half there part time – her Teacher of the Deaf (ToD) organised a series of transition meetings between preschool and her new primary school in which we addressed S’s needs, we devised an action plan and we held a “play and stay” session. The meetings were very useful and the ToD was very pro-active. I feel so relieved that there will be a ToD visiting S’s new school on a weekly basis.

Another concern I had was with the building of her new school. It is rather old and the reception class has poor acoustics. I have asked the teacher for permission to bring in some thick curtains, cushions and soft furnishings to prevent noise reverberating.

The teacher and I have discussed putting ferules (a ring or cap) on the end of the chairs and tables in the classroom and in the main hall where assemblies and lunchtime take place. By chance, the classroom was due to be redecorated which means the teacher was able to do this with S’s needs in mind. The changes, such as creating a quiet space for small groups to work in, will not only benefit S but will be a benefit all the other children too.

I guess now that school is about to begin I feel like I have prepared as much as I can think to do – but, as a parent, it never quite feels enough. Like all children, S is precious to me and I want her to be happy first and foremost. She is an incredibly bright child and, if we follow a joined up approach, there is no reason my daughter cannot excel like her peers.

I am under no illusion that once she enters those doors I can become complacent. The real work only begins there and my job is to support her and to support the professionals she works with. I can’t wait to see her thrive.

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