Friday, June 6, 2008

My special brother by Alison Kennedy

Matthew spent his first years cocooned in his own little world. He had been a very happy and forward baby, but at six months, following his whooping cough (three in one) vaccination, he had a convulsion. More convulsions followed, and it soon became obvious that these had been only the beginning of what were to be further problems. When autism was finally diagnosed, my parents were told it was unlikely that Matthew would ever be able to communicate properly or form relationships with people; co-ordination would always be a problem and it was unlikely he would be able to hold down a job. It was probable he would be locked in his own world for the rest of his life.

Communicating with him was a big problem for him and for us, and, after many years of frustration on both sides, the barriers were broken down due to his exceptional gifts in art and music. Through these languages we came to understand and communicate with him, and he with us. We found Matthew.

In the early days his drawings had been the invitation into his little world, an invitation his psychiatrist accepted. In nearly every drawing there was a little boy with a mass of curly hair, and through these sketches it became possible to talk to the boy within. There were also his obsessions. We always reassured these insecurities and phobias by our acknowledging them - even if it meant visiting every toilet in every house or building so that Matthew could flush the chain before feeling relaxed in the unfamiliar surroundings. And then, when he was 14, there was an obsession for John Denver's music.

It was this obsession that led to his most valuable gift of communication being unleashed. I started to teach him the guitar, a task that at the time seemed impossible due to his lack of co-ordination and academic ability, but in time he began excel. He has perfect pitch and we discovered that he could imitate any chord or sound he heard. With John Denver's recordings to guide him he soon knew more chord formations than I knew existed.

Today, Matthew communicates best through his music. It is when people see him entertain that they see the Matthew our family know and love. He sings, plays the guitar and writes songs, and it is in this way that HCPT (Handicapped Children's Pilgrimage Trust) asked him to help. He has been going to Lourdes with them as a helper for the past 16 years providing the music at mass and entertaining pilgrims during the evenings. The cassette 'Through the eyes of them' was the result of this association, with the title song written by Matthew - the words portraying his own personal experience of handicap.

After attending the local Catholic primary school, he had gone to a special school for children with learning difficulties. Unfortunately, at the age of 16, he had to leave the school as there was no provision for him to continue his education through the education system; although he did manage to obtain a place on a gardening course. Since completing the course, he has been employed by the local council as a gardener/caretaker/waiter at one of their conference centres and several years ago returned to education through the Adult Literacy Programme run by the local community college. He works hard at his lessons and homework and each year sits the exams with much-deserved success. It is his own determination to self-educate that keeps him going. We see with it a continued growth in confidence (along with a wall full of framed certificates).

Matthew, now 40, lives at home with mum (dad died 13 years ago). He has proved, when she has been on holiday, or away visiting my sister in America, that he can cope with the home and with looking after himself. In lots of ways he is more independent and capable than many young men (and husbands!) of his age. He still has a few of the mannerisms and insecurities characteristic of autism, but he is in control of these and they are only recognisable to those of us who know him well. He is thoughtful, affectionate and caring and a lovely uncle to his nieces and nephews.

The original advice and prognosis my parents were given was hopeless: they were even advised to send him away to a special unit in Scotland that cared for "children like him", and "forget him". My sisters and I are so glad they didn't take the advice. It has definitely not been easy, yet Matthew has received all the care he needed to survive from his immediate family and his extended family at church. There have been many wonderful people in his life, family and friends within our parish who gave support to Matthew and to my parents at what have been sometimes very desperate times. The support has been both in prayer and in practical help, and we shall always be grateful.

In acknowledgment of this support I always want to share Matthew's story with others, as an encouragement to their particular handicap. Indeed, there are so many memories and stories to share that "I could write a book", as the saying goes. But there will be no need, because Matthew has already started writing his autobiography. The opening chapters make enlightening reading and, with his determination to complete what he starts, I know that one day it will not be my words but Matthew's that inspire others.

As a family, we would all agree that it is impossible to claim any one particular activity, person or occasion unlocked the door to Matthew's world, as there has been so many from which to choose. In the many dedicated years of love and prayers, little steps were taken and little successes achieved. Yet these years have also seen countless rewards, and Matthew is someone whom we feel privileged to have been given. Through learning to understand and help him we have discovered so much about ourselves and what is important in our lives. For me the importance of communication has become my focus, and helping people to communicate faith through their gifts and talents has become my vocation and my work.

I shall always be grateful to Matthew for all he has taught me. He is a very special brother.

By Alison Kennedy
alison@watermeadapostolate.co.uk

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