When my boys were first diagnosed as deaf there wasn’t the great parent support network that now exists in our area through the local deaf children’s society.
For a long time, we were quite isolated until gradually we met other parents in the same position as us – hearing parents of deaf children taking in as much as we could in a new unfamiliar world – and making life-changing decisions that challenged us morally and emotionally.
Whilst a lot of the decisions we faced were similar, for one of the families I was closest to when the boys were small, an education decision had them making one of the biggest choices of all for their whole family.
Louise’s twin daughters Eliza and Esmee were born within days of my eldest son Cameron, but several hundred miles away. The girls were born prematurely and needed multiple medical interventions.
When the girls were seven months old, Louise and her husband Phil moved back to the Wirral from London, to be close to Louise’s family and to be close to Alder Hey hospital which could provide a central base for medical involvement which was split across four different hospitals if they remained down in Southern England. A big move but one completed before it involved a move of schools for any of their children.
Our families met soon after the girls and Cameron turned three. In addition to having several other significant health considerations Esmee was also profoundly deaf and going through the assessment process for cochlear implants just as my boys were.
I should mention here that Esmee’s twin sister, Eliza, has also since been diagnosed with a moderate hearing loss – but when she was slightly older. Esmee attended the same hearing resource base as the boys when they all started school, spending time in both Cameron and Campbell’s class during those first years in school and our children were all close.
Esmee benefitted from having several deaf peers in her class, sign support in class and access to a specialist speech therapist who provided intervention at the school. The decision for Esmee to attend a different primary school from her older brother and her twin was not an easy one but one which Louise and her husband Phil felt, given the advice they were given by professionals, was necessary. Life then was stable, perhaps not perfect but figured out for now.
Everything changed though, when one evening Louise attended one of our local deaf children’s society AGM’s. Louise had been one of the parents who restarted the dormant group, with me and a few others, and she sat on the committee. Some parents we had never met before came along for the first time that evening and what they had to share had a profound effect on Louise and from that evening forward their family started to make their biggest decision yet.
The family shared with our group of parents, who at that time had mainly early primary aged children, how they had taken the decision to send their daughter to The Royal School for the Deaf Derby when she had turned 11 and needed to transition to secondary school.
They had looked at the options available locally to support their daughter and had realised it wouldn’t be enough. There was no secondary hearing resource base or school for the deaf locally which she could attend on a daily basis so they made the heart wrenching decision for her to become a weekly boarder at the nearest school for the deaf where they believed her needs could be met most fully.
Louise left the meeting struggling with the thought of sending a child away to school to board – something she couldn’t imagine doing not only for the reasons most parents may have but also because of the medical support Esmee required- but she also left with a new nagging thought in her head. What would be available in terms of support and provision locally for Esmee when she reached secondary age?
At this point Esmee was six years old and in Year one. Despite having bi-lateral cochlear implants and significant levels of sign support in class Louise knew her daughter was struggling to maintain progress at the rate of her peers, having difficulties in understanding and using language.
Esmee enjoyed using sign language and was developing her skills in that steadily but her parents knew that all her interactions and access to what the class were doing was part of a three way interaction with Esmee relying on the person providing her sign support to convey messages from others to her and from her to them – something which was being supported adequately at primary level but from the description which the other parents had given could well not be feasible within the current structures available locally.
Louise and Phil talked through their concerns together and could not envisage Esmee becoming a boarder at a school and being removed from their family for chunks of time but the alternative could mean a massive trade-off for the rest of the family, including their other two children. They started to explore the options available and went to look at several of the deaf schools in England.
Having no particular ties to the other locations in England in which deaf schools are located, if they were going to move it would have to be for the right school. The first couple of schools they looked at were not appropriate, for their own individual reasons. Then came, as Louise describes it, their light bulb moment – the family went to visit Hamilton Lodge School and College in Brighton.
Brighton didn’t hold any family or friend connections for them but could work as a suitable alternative for Phil workwise. Would Hamilton Lodge School and College fit for Esmee any better than the previous schools they had seen or the limited options they had at home?
The family couldn’t believe the instinctive response they had to the school. They describe the confidence in the children and young people around the school and the facet of having deaf teachers on staff as overwhelmingly reassuring during their initial visit. It felt like a piece of Esmee’s life which had been missing to date but which they had found there.
With the visit a success, the truly hard decision came along. Could they really uproot their whole family from their current schools and leave behind all their family, friends and professionals who they had come to trust over the years to give Esmee this chance?
Louise knew the other children could potentially manage in new schools but knew also what a wrench it would be and how long it could take them to settle. But having the knowledge that it would keep their family together and be the best thing for Esmee helped them take the leap.
The family moved when the twins were seven, leaving behind almost everything familiar. Louise – in a desperate bid to keep a constant and to allow them to search out appropriate services in their new area – arranged to keep Esmee’s cochlear implant care under our local centre for the time being – a tiny piece of their lives that could stay constant.
Many years have now passed since they moved to Brighton and Esmee is now a young lady. Louise describes the change in her over her first year at Hamilton Lodge School and College as amazing. In her first year within that environment she developed her attention span and found a desire to try to understand and attempt to express herself more and more. Today she is bi-lingual in English and sign, and Louise loves seeing her interacting with her peers at school – switching from sign with full BSL users to using her voice with other deaf peers.
Esmee’s needs are met at school in a subtle and quiet way. She is a young person who happens to be deaf, as are all her peers. Having had seven spinal surgeries in the last three years but being of a very sporty disposition, the PE staff make sure she isn’t frustrated by exclusion by incorporating her needs into their lessons seamlessly.
Educational targets can be focussed individually and effectively because of the small numbers. Esmee’s brother and twin sister have settled and flourished in their new schools, despite a rough settling period which had Louise second guessing herself for months.
We have kept in touch over the years following all our children’s progress and now our conversations often turn toward the future.
Louise’s worries now focus on the future for Esmee. Where she is now, she is protected, in an environment where deaf awareness is key and Esmee can communicate with all those around her, but what of when she needs to leave? As her mum, Louise now questions whether it will be harder for her out in the big wide world than it is for other deaf children who attend mainstream schools with support who maybe have to fight or struggle a bit more through those teenage years?
Will the reality of a larger world with people it is harder to communicate with and interactions with those with less deaf awareness be more difficult for Esmee long term or will the benefits she has from the strong identity she has formed with her deaf peers help to balance this out?
They are unanswerable questions just as many of the questions we parents ask are. We make one decision for the best, with the most accurate and informed knowledge available at the time, then it is futile to second guess at alternative outcomes further down the line as we will never know.
Louise and Phil made one of the bravest decisions I have known hearing parents of a deaf child to make in moving their whole family to access the most appropriate education for their daughter – one that was so hard to make but which is proving them right as the years pass. It is amazing to hear how well Esmee is doing and how well the environment suits her.
Tamsin Coates trained and worked as a Speech and Language Therapist for over 10 years. Her training came in useful when she had two sons who are profoundly deaf. She now juggles being a mum to three lively children, writing (she has new book A Changing Skyline out now and you can buy her first book Meanwhile I Keep Dancing here), co-ordinating Teen Team events for the Wirral Deaf Children’s Society and raising awareness regarding deaf issues wherever she can.
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John David Walker
March 11, 2014
As someone who lives in Brighton and have interacted with many of their staff members and students from outside of Hamilton Lodge School, I can’t say how proud I am to read a story like this one. It just shows how a school like HLS can create an inclusive environment that allows the child to grow with confidence, and have the ability to interact in BSL and English. For me, that confidence was sorely missing in my own educational experience, in a mainstream school.
Tim
March 11, 2014
…and mine – in an oral Deaf school.
I very much like Hamilton Lodge’s communication policy; they seem to do inclusion and diversity very well indeed.