Our son’s story
Our son was born in August 2003 and was a perfectly healthy baby until he contracted pneumococcal meningitis in April 2004. The doctors prepared us for the worst as we were told there was only a fifty percent chance he would make it. He was on a life support machine for about a week and remained in hospital for about 10 weeks. Thankfully the team at Great Ormond Street did everything possible to save his life. We had already been told that due to the illness it was likely that he had lost his hearing, but at the time I was still very hopeful that this wasn’t the case!
He was referred to audiology, and following tests it was confirmed he had a profound bilateral hearing loss. He was initially fitted with hearing aids in August 2004 but they didn’t benefit him. During this period I was given some information on cochlear implants and also had some BSL lessons. I initially had my reservations about cochlear implants and was reluctant to put him through surgery. I remember my meeting with the consultant, and being told they needed to implant quickly due to concerns about onset of ossification, but as I was handed the consent form, I just felt overwhelmed by it all and at that point declined to sign the consent form. I must say that it was particularly difficult for me to make the decision to put him through surgery as the meningitis ordeal was still very fresh in my mind. I was given a lot of support from the implant team and watched a number of DVD’s about children who had received implants, but despite this, I still had my fears!
Eventually he was implanted in January 2005, but had to return to hospital after about a fortnight post-surgery due to a wound abscess. Thankfully we haven’t had any major issues with his implant since then, and he has always been happy to wear it, but not without questions! Some of the questions I have been asked include: why he was implanted and whether there were other implanted people in other countries like ‘Japan and India’. Despite all the questions, he appears to have embraced his identity as a cochlear implant user. I have lost count of how many implanted people we have stopped on the streets as he always feels compelled that we have to at least say hello! It has been a long and certainly interesting journey. I would not have had it any other way and can’t imagine how life would be if I had not returned to sign the consent form!
Then came the schooling challenge! He attended a local mainstream nursery with input from a Teacher of the Deaf who supported us through the Statementing process and provided us with information on charities and support groups. We found attending the Ear Foundation very helpful and he always looked forward to playing with other deaf peers. Once we had a Statement, he moved to a mainstream primary school with a hearing impaired unit. He learnt to sign and started making some progress with his speech. We initially had some challenged with him refusing to attend school, but we received a lot of support and he eventually settled. As he moved up his primary years it was evident that we were not only dealing with deafness. He was really struggling with his leaning, and his language development showed very slow progress.
He received sessions of speech and language therapy but I didn’t feel that this was enough considering his language levels. After much frustration over the years, I expressed my concerns during a routine follow up appointment with the paediatrician. He was then referred for a neuropsychological assessment at the age of 8 which confirmed that his learning and specific language difficulties were related to the damage caused by meningitis. It was very useful to have a report with recommendations on how best to support him. It was also at this point that I started considering options for his secondary education. Little did I know there was a tough battle ahead! There seemed to be the only one option, a mainstream academy with a hearing impaired unit. I was aware of specialist deaf schools but must admit that I had not done much research on these. By the time he was in year 5, I just knew that mainstream education would not give him the best outcome. I was put in touch with CICS with help from the Ear Foundation and received a very quick response. I was immediately put in touch with other parents and as they shared their stories, I was given a renewed hope. They openly shared their experiences and I was given invaluable information which really prepared me for what was ahead. In May 2014, I attended an open day at Mary Hare and took an interest in what was on offer. After getting in touch with the NDCS and expressing my interest in Mary Hare, I was informed that there was also St John’s which was closer to us. Following a visit to St John’s, I was absolutely sure that it was the best environment for him and my decision was made even easier after he himself visited St John’s! The reality of the difficult process dawned once the Local Education Authority became aware of our request. The speed with which our case was handled by NDCS really gave us a fighting chance as we were running out of time, and fortunately The Ear Foundation’s Sound Advice reports came just in time for the EHCP transition meeting in October 2014. In summary, it took several months to get the LA to agree but St John’s was finally named in the EHCP in time for September. As many parents will know, it’s not a straightforward process. It was a gruelling experience, to say the least!
On a positive note, I am so glad that I received so much support from CICS parents. Many hours were spent on the phone with parents, some of whom were obviously very busy mums with young children. It was really humbling how they went out of their way to make time for phone calls and emails. I cannot even put into words how grateful I am to have received all this support at a time when I most needed it. It was certainly a lifeline during one of the most difficult periods. To all CICS parents, and especially CICS’ ex northern region coordinator, I would like to send my big and heartfelt thanks. You are all truly amazing people!
Our son is now settled at St John’s and we are slowly trying to adjust to the change. The house is very quiet and we always look forward to Fridays when he returns for the weekend. He is very proud of his school and he always says ‘it’s the most amazing school’. He really appreciates his placement at St John’s and I hope he will make the most of his time there!
Beverley Mafi, Parent, January 2016
For more information on obtaining a place at St John’s for your child, or to arrange a visit, please telephone Mandy Dowson, Parental Support Manager at the school on 01937 842 144.