Genome Research Project Now in our fourth year of supporting Muir Maxwell Trust Clinical fellow Dr Simona Balestrini - please click here for further information. Close notice
Bg Top Edge Bg Bottom Edge
Home > News > Blog

So Much to Say!

Dear All,

I have so much I want to say right now. I think it calls for an agenda, and a few blogs in quick succession, which might make up for the recent absence of blogs too.

Watch this space for the following subjects, all of which I intend to cover;

Scottish families in need - you have a right to a Section 23 Assessment of Need
Have I ever told you about Inga?
Caring for a Special Needs Child - the Toll on Family Health
Vagal Nerve Stimulator

For the moment I want to tell you about the conference I attended in Glasgow two weeks ago and a wonderful lady called Sophie Dow, founder of a charity called Mind Room which is concerned with the issue of learning difficulties. Sophie and her husband Robin have a daughter called Annie aged 20 who has learning difficulties. Every few years Sophie organises a conference on the subject of learning difficulties and she does this with an eminent Swedish clinical psychologist called Christopher Gilberg. It's called "No Mind Left Behind."

I was privileged to be asked to speak at the conference which was held in the Glasgow Concert Hall and attracted over 800 delegates, comprising medical professionals from all over the world, teachers, parents, people with learning difficulties, representatives of local authorities, charitable foundations, the Scottish Government and many more, I am sure.

The conference was cleverly structured with two parts running simultaneously representing the "science" of learning difficulties and the "reality" of learning difficulties - both were equally informative and to ensure the delegates didn't miss anything, all the speakers were recorded and their talks are now accessible to the delegates who attended the conference in a special video forum created on line.

My challenge was to work out how to tell the story of raising Muir who has profound learning difficulties as a consequence of his epilepsy. Sophie asked me to focus, in particular, on what I have achieved for Muir so that the story remains a good one, despite his disabilities. A formal conference setting is a difficult stage from which to deliver such a story and a power point presentation wasn't going to work.

In January of this year I kept vigil by Muir 's bedside whilst he recovered from surgery for a replacement vagal nerve stimulator (a blog for another day.) The surgery happened to coincide with Muir's 14th birthday. That evening, whilst Muir was sleeping, I wrote him a letter (one he will never be able to read or understand) which serves as an honest and heartfelt overview of where Muir and I are now as a mother of a son with severe learning disabilities. The process of writing the letter was cathartic. The letter represents Chapter 14 of a book that I am writing, a work in progress about the experience of raising Muir called "To Touch an Angel's Wings."

I shared this letter with the delegates at the conference. Please accept my apologies to all those delegates who were reduced to tears. It is a sad story in so many ways but the emphasis of the letter is on the reality of raising Muir, the celebration of his many achievements and a realisation that one day I will have to let him go off in to the world ( albeit, at his level) as we do all of our children.

There is a twist to this tale that I will also share with you. I do not normally suffer stage fright but in the course of the week running up to the conference I had suffered the onset of double vision that dramatically became full- time the day before the conference. I was determined not to let Sophie down and instead of driving (which I couldn't do) I took the train to Glasgow. My short walk from Queens Street Station to the Concert Hall has to be amongst the most disconcerting moments of my life. Asking strangers for directions, crossing a busy road, climbing the steps up to the front door of the Concert Hall, searching for a familiar face amongst 800 delegates and all this with newly established double vision - not an experience I would like to repeat too often.

Thankfully, I could still read my Letter to Muir when I stood at the lectern, although I had to hold it very close to my face in order to see it. All the people in the room were a blur unless I looked at them out of the corner of my eye.  I apologised in advance for my unusual presentation style and mentioned my double vision. I made a joke about the number of delegates in the room being twice as many as I had been expecting.

I have since been diagnosed with a mild 6th nerve palsy, a hang- over from a brain tumour and brain surgery that I had in 2006 - but that's a story for another day.

Watch out for a series of short blogs which will cover the topics detailed above!

Best wishes to all,

Ann Maxwell

< ┬áReturn to blog

Commenting is now closed.