Watch this short documentary on Max's journey and about The Elizabeth Foundation (EF): https://www.youtube.com/watch?v=i0UwPnE8ad4
Please help us say thank you, and raise money to help EF help other families like ours. Luke and Jake are cycling the journey from our home in Suffolk to Portsmouth; Max is taking part in the Junior South Run; Luke, Jo, Jake and Chloe are all running in the Great South Run.
Max is a confident, lively and inquisitive 7 year old, who quite literally does not stop talking from the moment he wakes up. Nothing remarkable about that until you hear that shortly after he was born we were told he would soon stop making the usual baby noises and would never talk. This bombshell reverberated round our whole family and on reflection was more devastating than the earlier diagnosis we had that Max had been born profoundly deaf.
Born 5 weeks early and very seriously ill, against the all medical expectations, Max had bravely clung on to life, first in the Neonatal intensive care unit in Ipswich and then in Addenbrookes. As a result, when Max did pull through and became well enough for us to take him home, despite our relief and joy, we always suspected that for Max to have been so poorly that it would almost be too good to be true for him to come through without any lasting problems.
The emotional rollercoaster that was Max’s early life continued as he was first diagnosed with hearing loss in one ear, to ultimately being told he was profoundly deaf in both. We both clearly remember the moment we were told “Max is profoundly deaf.” Within minutes of being told, we had imagined every possible milestone in his life, from going to school, to getting married and so much more. What impact would this have?
Locally we were introduced to various professionals – a paediatrician, social worker and teachers of the deaf. We were told that there was a “protocol” or guidance to follow for children with Max’s diagnosis. His condition of Auditory Neuropathy Spectrum Disorder was new, rare and those in Suffolk had not had a baby as young as Max with this diagnosis. In short this was “wait and see” rather than recommending any immediate intervention. We were fully prepared to follow this advice but 2 key incidences caused us to begin questioning this guidance.
The first of which was when our teacher of the deaf told us that the sounds that Max was making (like most new born babies) would gradually over time stop and he would slip into a world of silence.
Out of a real dark period for all of us, came a chink of light when Max’s grandmother read an article in a newspaper that mentioned EF and their work at getting deaf children to talk. The Elizabeth Foundation (EF) is a charity which specialises in supporting families with children who have a hearing loss. EF started up in the living room of Elizabeth’s parents (and founders of the foundation) Shirley and David Metherell, and now housed in a purpose built specialist unit in the grounds of QE Hospital Portsmouth. The approach (in this important early period of a child’s life) is to get babies and toddlers to vocalise despite their hearing loss.
If we had to sum up EF and what it means to our family we would do so by relaying the experience when we first took Max to EF to meet the staff as a 6 month year old coming as it did soon after the “They stop those making noises” bombshell. We nervously took Max in to meet Pat who worked with all the babies at EF. Within 2 minutes of meeting and playing with Max, and in a very matter of fact way Pat told us “Oh we will get him to talk no problem”. The new dawn for Max and all of us was just beginning.
What was going to be simply accessing the EF techniques via distance learning became 3 years of Jo taking Max to down to EF from Suffolk for 2 days of the week. The sacrifices both emotional and financial were high, but the result was worth every pound spent and every tear shed. Max’s early years were thus spent on the M11, (where he first pronounced his name correctly in the back of the car!) M25 and A3.
Equally importantly EF offered us knowledge and support but also gave us the confidence to be prepared to continually challenge our local team of professionals (such as asking for second opinions and asking to be referred to Great Ormond Street hospital to see a specialist in Auditory Neuropathy. This ultimately led to Max being recommended for a cochlear implant.
This was the start of another roller coaster ride which has resulted in Max having bilateral implants albeit with the sacrifice of one of his taste nerves, the opportunity to have MRI scans and the chance to play rugby. EF were there every step of the way. It is a shame we had to travel so far to get this support. The provision locally was in our opinion, inadequate. A parent/baby group was not going to be enough. We wanted our son to have age appropriate language by the time he started school; we were told yet again to wait. We were told we would not get a Statement of Special Educational Needs – he was too young. We were told we would not get any help towards the cost of traveling to the Elizabeth Foundation. We were told ‘No’ lots of times.
Thank goodness we didn’t listen (how ironic!) We did get the statement. We were the first parents to get EF named on the statement. We did get some of our costs paid. Max did have age appropriate language by the time he started school.
Not a day goes by where we don’t think of the friends we made at EF. In fact, every time our little boy utters a word – we thank them. Truly amazing. He will stop making noises – I don’t think so!
Thanks for taking the time to visit our JustGiving page.
Luke, Jo, Jake, Chloe & Max