My mum emailed me this recently and I thought I’ll put it up. It was certainly interesting to read about my early life of which I have very very vague and unexplained memories - so this does answer some of the questions I’ve got with what I remember. Before you start, for those that did not know, I was born hearing. The cause of my deafness is still not known. And yes I was extremely difficult - well - suddenly going deaf, sheer frustation in the lack of communication and all that which take over so I have much to thank for my parent for putting up with all that rage back then!
So, I started reading Silent Alarm and the first thing that struck me was how you, Joe have no real knowledge of the processes of your early years. We all have our own emotional memories, and memories of events, but I’m not sure you know why some of the things that happened, happened; and that is some thing you are entitled to know. So my dearest Joe this is your story. I will leave the emotion out of it, I’m sure now you are a father you will understand that the things that hurt your child hurt you, and I don’t need to explain that.
Just before you were three, in the summer you were slightly poorly and went to bed for about half a day with a slight temperature, this caused no alarm and you recovered very quickly it was only later that you seemed to ignore us when we talked to you , wouldn’t come when I called you but as you were always wilful to be honest I just assumed you were being an independent pain in the butt. Eventually it became fairly obvious that it was a bit more than that. A visit to the doctor diagnosed Glue ear and a small operation to insert grommets would solve the problem. I had no way of explaining this to you so I know you found the hospital visit very scary. I sat beside you and when you woke up I called your name and you didn’t respond - not a good moment. The doctors were confused but decided that maybe they should redo the operation, by this time you were not having it and I had to give you the pre-med at home to try and calm you down!
Again the operation was a failure and we were left in a place with no answers, no explanations, apart from a theory that it might have been a mild attack of measles, and no one offer any real constructive help apart from putting us on the NHS tread mill for assessment and education. You and I Joe went up and down to London to visit various experts who tested your hearing and IQ, needless to say they confirmed one thing, that you were extremely clever! These trips were a nightmare for both of us and I guess we probably upset quite a few commuters on their journeys home!
The local authority offered you a place in a nursery school in Watford for children with hearing difficulties so I duely dragged you over I think you lasted about four weeks before they told me that they couldn‘t teach you and the best place for you would be a residential school in St Albans . You were four years old …………..I told them to shove it and marched out never to return .this meant we had to find somewhere for you and this was why we ended up in whitchurch with you going to Bedgrove with Mrs Campball.
After that things calmed down a tad as we now had the support of the unit at school and apart from the constant visits to the ENT dept at Stoke Mandeville to get new ear moulds and hearing aids because you had thrown them away in the garden … I got very good at finding them! And the time when you wrote to your consultant to tell him off for not explaining things to you so we had an afternoon with him putting pretend grommets ito pretend ears! Life had some sort of direction until we got close to your 11 birthday I was told by the head master at Bedgrove that they were not going to put you in for the 11 plus and you would automatically be going to a school in Milton Keynes. I knew as did your teachers that you would pass the exam but the local government didn’t want to face the problem of how to teach you in the local grammer school, and they weren’t prepare to pay for you to go to Mary Hare . At around the same time there was a lot of talk on the radio about parental choice for schooling … nothing ever changes……..I was so angry that I phoned up Radio Four and told them your story they asked me to go up to London to be interviewed which I did, they then asked Aylebury County Council if they would like to reply, they declined . I got Mare Hare to let you take their exam even though they had finished the exam process for the year, which of course you passed and the local council agreed to fund you schooling without a fuss. The rest of course you know.
I had no guide lines there were no support groups, and I probably made mistakes but I did everything I could to fight your corner. The one thing I really really wanted for you Joe was for you to meet someone amazing who would be able to really talk and understand you, for you to have children, and most of all to be happy. Well sometimes wishes get granted you have the most amazing family Kat is simply the best as are Cadhla and Padraigh; so go on and be happy.
Love you all
Mum xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
{ 3 } Comments
“I just assumed you were being an independent pain in the butt.”
Not much has changed in 25+ years
What you and your Mum went through is much more frequent than people may realise. I was born deaf (no idea why) and my parents had to fight hard for everything - for me to go to nursery school locally, not to be packed off to a boarding school at 4 and when I went to Mary Hare, the same old story of having to fight for funding. None of this I appreciated until the end of the fifth year when I wanted to stay on for the Sixth form and Surrey refused to cough up. A long fight developed which I wont go into here.
NDCS does some valuable work - my Dad was chair of the local NDCS Society in Surrey but they rely so much on volunteers to get out there and meet parents to raise awareness of what the issues are and what support is out there. Some areas that have local NDCS branches today were not around 5 years ago and those that had branches do not have them today. It is because people move on and children grow up. What really moved me when my Dad passed away in November was that one of the teachers from primary school contacted me and said that he and the local NDCS branch raised funding for “radio aids” - in the early 80s this was the latest technology, well advanced even before “brick” mobiles with carry cases for batteries became popular with Yuppies. (See http://www.retrobrick.com/4500x.html )
Sadly you rarely hear about NDCS branches nowdays or what they do for parents with deaf children. I think your Mum would have found the support from a group of parents in similar siutations to be valuable.
Thanks to your mum ..she made me cry at work!
Should have a warning about this so I don’t look a sissy …
Fintan - you’re a sissy. We already know that
Stephen - Yup too common and it’s only when we are older we realise what they do to ensure we get what we need. I remember thinking at my wise young age of 6 or 7 that my parent wasn’t getting what I want(!) But they was all along.
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