Four years ago, when our newborn daughter Xanthe was diagnosed as profoundly deaf, my partner and I found ourselves thrown into a world we knew nothing about. Like many parents we spent the first few weeks and months adjusting by building our knowledge and networks, whilst juggling life with two young children. At times it felt like we were just reacting to a series of diagnoses, each time having to start from scratch to equip ourselves and learn anew what our daughter needed. In our explorations we heard mention of John Tracy Clinic (JTC), and got comfort from the thought that there was somewhere we might be able to get some support further down the line. Once Xanthe turned 3 (and her brother 6, the right age for the sibling programme) we began seriously considering a trip to JTC.
Without knowing how we would benefit from attending JTC’s International Summer Session, the cost of the trip was a barrier we had to overcome. It isn’t cheap to fly a family to L.A. and despite session fees being subsidised by JTC the trip still represented a significant outlay. Looking back I feel every penny we spent was worth it and would happily spend it again just to have the same experience.
I think one of the reasons we got so much from our time at JTC was because we were at the right stage in our journey, practically and emotionally. After almost 4 years of being a mum of a deaf child I felt emotionally ready to get an independent view of Xanthe’s progress and the challenges she may face. I felt ready to learn more about the things we could do to support her social and emotional development, and to help her make a successful transition to primary school. By now she had had her bilateral cochlear implants for two years and we were lucky to already have a lot of the information we needed, which meant we had specific questions we wanted answers to, and felt clear about the things we wanted to focus our energy on whilst at JTC.
I was completely blown away by the level of knowledge and expertise of the JTC staff. The preschool staff knew how to engage and stretch Xanthe from day one. In the parent programme it felt like we had stumbled upon world-experts in the very subjects we needed help with the most (school placement decisions, tricky speech sounds etc.). The course was more intensive than I’d expected, but the effort we put in was worth it. There wasn’t a question we could ask that the professionals weren’t able or willing to explore with us. The staff’s genuine desire to be responsive to our needs was such a luxury after having to work so hard in navigating the system back at home. For the three weeks at JTC it felt like we were in a safe bubble, where we were encouraged to acknowledge and celebrate the journey we had been on, and to dare to lift our heads up to look to the future. We were surrounded by a team who understood the journey we’d been on, were dedicated to the same goal as us, and urged us to raise our expectations even higher.
One of the most overwhelmingly positive aspects of our experience at JTC was meeting other families with whom we shared so much in common. I had always had a deeply-held sense that the journey we’d been on (since we’d become parents of a child with extra needs) was a beautiful one, despite the pain and difficulties we’d experienced along the way. Spending three weeks in the company of 17 other families at JTC allowed me to witness countless examples of that beauty in action, in the parents’ breathtaking commitment to their children. Whenever I’m short of inspiration or strength back at home I just cast my mind to these wonderful families. Facebook allows us to keep in touch since we’ve left JTC, and I hope that one day we’ll be able to organise a reunion.
I had the heaviest heart when it was time to leave, and we did come away with the inevitable ‘to do’ list, and feelings of concern about how we were going to squeeze more in to an already-full schedule once back home. However, we also came away with something more – concrete feelings of confidence in the world of hearing loss, and a feeling of empowerment to be able to do the best for both our children.
For us, the summer session gave us a rare opportunity to step away from the pressures of normal family life, and discuss our plans, hopes and concerns together as a couple and with experts, able to relax because our children were getting exactly what they needed. At JTC we regained our confidence to plan for the future of our family. We now feel that we know what Xanthe needs, and know how to engage and work effectively with others to get more help if she or we need it.
I would imagine every family will have gained different things from their experiences. JTC’s International Summer Session is an opportunity to celebrate and maximize the difference you as parents can make in the lives of your children, which I wish every parent of a child with (or without!) hearing loss could have.
Composed by Chloe, parent participant in JTC International Summer Session 2013