This post has been written by a mother of a young boy named James, who attended our Kidz to Adultz South event last summer and came across Remap.
James is a scrumptious gorgeous little boy with incredible courage. He had a very, very tough start to life with very serious medical problems resulting from the rare chromosome condition he has. Sadly, his birth parents were unable to look after him and it was necessary for him to be taken into care. During this time he had to have open heart surgery twice. Despite everything, his lovely foster family said he kept giving them his gorgeous smile!
When he was 16 months old we found each other and much to our delight we became his forever family. We adopted him and although it has been the hardest thing we have ever done, our lives have been truly enriched by him. He is very much loved by us, his mum and dad, and his big brother and sister – and he gives just as much love back in return!
Tell us about the challenges of James’ condition
James is now 5-years-old and has made remarkable progress. Despite the predictions, he can walk and talk and is even attending a mainstream school with support. However, he still faces numerous challenges – as always with courage and a smile. One of our challenges is that one of his vocal chords is paralysed (probably damaged during one of the heart surgeries). This means that he aspirates thin liquids, relies on tube feeds for his nutrition and has a very quiet ’strained’ voice. Although his voice isn’t a problem at home, whenever there is any background noise it becomes very difficult to hear him. So any trips out in the wheelchair are punctuated by frequent stops to bend down and try to catch what he is saying.
Car trips are deeply frustrating as we cannot hear what he is trying to say. He has always been really good about persevering with repeating himself and using signs until we understand, but we were very concerned that he would get discouraged and eventually give up on the effort of trying to communicate. It was a particular problem in nursery, which was inevitably a noisy environment. He rarely interacted with other children and we felt that this was at least in part because of the difficulties in communication. Most young children don’t have the patience of (most!) adults, so when they can’t hear him they tend to quickly give up and move onto something else.
How did you first meet Remap and how did this benefit you/James?
We met Robert at the Remap stall at Kidz to Adultz South last summer. He explained what the charity does and asked me if there was anything at all that I could think of that could be invented to make our lives easier. We were sure that there must be a technological solution to our problem, but the voice amplifier that we had tried wasn’t suitable as it was designed for adults and was too big and not sensitive enough. Our consultant at the children’s hospital told us that there isn’t anything out there for children. So, I knew exactly what I wanted Remap to invent!
Niall, a Remap engineer was quickly assigned to us and we met to discuss what we had in mind. Together we refined our initial ideas until we had a workable solution. Then Niall patiently devised various prototypes, testing them out and making changes until he came up with our final version. The amplifier that we now have is small enough to fit on a belt (with the speaker) and is light enough that it doesn’t bother James. We have a head microphone which works well when it is in the right position. However, it is quite intrusive and James tends to fiddle with it and dislodge it.
So we are still on the search for a lapel microphone that is sensitive enough to pick up his voice…
Nonetheless the system that we have has been great and helps us so much. James has started school now and the best news is that he is talking to his peers! He talks with the other children confidently. We cannot believe the difference! He can be heard in the classroom and so can contribute independently to discussions and whole group work rather than having to having to rely on the voice of his 1:1 TA. We can hear him in the car which has reduced the frustrations of car journeys hugely. When he is out in his wheel chair I just put the speaker on the handlebars and now can hear him perfectly.
Hopefully the system also reduces the strain on his working vocal chord, meaning that there is less risk of long term damage. The only problem is that everyone can hear him through the speaker now – so I can’t get away with it when he comes out with those excruciating observations that only mischievous 5-year-olds are capable of!
What inspires you the most about James?
We are constantly inspired by Tyler’s determination. He fatigues very easily but even when his legs are literally giving way, he tries to keep going. Also, despite everything he has been through he is such a caring, affectionate little boy. His smile is an absolute winner!
Is there any advice you would give to other parents with children who have the same condition?
I feel we are still very much in the learning phase! I suppose I’d advise to just keep fighting for what your children need, there is often a solution even if it’s hard to come by and isn’t what you first imagined.