Two insights on living and working with special needs children
Gavin was thirteen a couple of weeks ago – a teenager. Suddenly he is growing up and adulthood stretches ahead of him. Something which Lesley (my wife) and I have talked so much about in the past, but now it is beginning to happen as we watch.
It seems no time at all since I held him, only 15 minutes old, in hospital those thirteen years ago. Little did we know then that Gavin would have such a profound effect on our lives and attitudes. He looked such a pretty baby and we were both so anxious to be good and caring parents. We had so many plans for him we would help him all we could and encourage him to reach his full potential. It was a time of happiness and hope for the future.
Gavin was three when we began to realize that he was different – he was slow to learn even basic things. He was confirmed as being mentally handicapped when he was four years old. We were devastated – this could not be happening to us; this only happened to other people's children. It was a horrid time for us both but we survived it.
Our original plans and aspirations for Gavin had to be altered and in many cases, set aside. However, there soon came a determination to ensure that Gavin had the best life we could give him. He was seven when somebody said that they thought he might be autistic – what was that? What did it mean? Once we had found out more, it explained a lot those difficulties at getting him to respond initially to anything, and the almost total disinterest in other children or adults.
But Gavin was different in many ways from the “classic autistic child". There are moments of reasonable communication and lots of cuddles. However, it was clear that he was autistic and this made our efforts to get the best for him doubly difficult. There are no facilities in our part of the country for autistic children (or adults) and it was only the magnificent efforts of the staff at our local “special" school which has done so much to make Gavin's schooldays both constructive and happy.
Apart from the school we had a struggle to get any other agencies to face up to the needs of autism. Things are better, but still far from ideal.
So here is Gavin at thirteen. My mind turns back to those hopes and plans that we shared when he was a baby. What might he have achieved by now? He could have joined the Scouts, played for his school football team, learned to ride a bike, been a demon on computer games, the list is endless. I would have been so proud of him, he would have done better than I could as a child.
But I am even prouder of his actual achievements, the day he managed to pour himself a glass of water unaided, the first time he walked up to his mum and said “tea please", the day he decided to sing the latest pop song all on his own. This list is also endless, but it continues to grow as Gavin tries to make something of his world.
The future – what can it hold for Gavin who lives in such a lonely and isolated world? What does he really want? Does he know? What a responsibility for Lesley and me, but we will eventually have to decide and it will have to be the right decision. The rest of Gavin's life will depend on it. He is unique and his happiness is vital. He has the right to enjoy life in his own way as much as anyone. We as parents, and society as a whole, have an absolute obligation to ensure that people like Gavin are treated with compassion, but most of all with respect and dignity.
Today he is a teenager! It won't be long before I will wake up again one morning and Gavin will be a man. How time flies! But in the mean time: Happy Birthday Gavin.
Acknowledgements: Autism Newsletter
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Many of the basic problems with which parents of handicapped children have to deal come directly from society. Such problems originate in society's perpetuation of certain myths – or frauds, to put it bluntly. We are especially susceptible to these myths as we are growing up. One myth encouraged by the romance magazines which teenagers read, is that marriage is “eternal bliss". Another more pertinent myth is that of this eternal and blissful union will come children who are both physically and mentally beautiful and perfect. And therefore the parents of a handicapped child have not lived up to the “ideal" and have produced an imperfect replica of themselves. This may cause much unconscious, if not conscious guilt, as well as feelings of inferiority. At the same time, if parents are “unfortunate" enough to have a handicapped child (which society says subtly they are not supposed to do), society then hypocritically says that they must be super-parents. They must supply enormous additional amounts of care, love and attention to their child. They must do this, additionally, on a 24-hour a day, 365-day a year basis; otherwise, they are super-bad.
As a professional evaluating a child's progress, I can be the most patient, empathetic person on earth for half an hour. I can look critically at the impatient, harried parent. Unfortunately, many professionals encountered by parents of handicapped children do not take the 24 hour a day, 365-day a year responsibilities into account in their evaluation of the parent. In the back of parents' minds then, is a vague awareness that society is looking over their shoulders and judging whether they are carrying out their prescribed duties, giving much love, attention and devotion, not missing any treatment appointments, providing the best available care, etc. This is a “goldfish bowl" type of existence which eventually takes its toll in energy, strength and courage.
Parents of handicapped children must realize that fleeting moments of resentment and rejection of the burdens presented by a handicapped child are natural, and that they do not indicate that they are bad parents. They need to have help in solving the practical day-to-day problems. The best help can be found in interaction with parents who have experienced and solved such problems. Even though every family's situation is unique and what works for one family may not work for another, having someone with common problems with whom to interact is in itself therapeutic. Parents must realize also that only by banding together can they bring about the changes in society that are needed. Legislators and other government leaders listen to groups when they might not listen to individuals. Therefore, in order to have their voices heard, parents of the handicapped must unite and seek common goals for their children's welfare.
The above was part of an address (given 25 years ago, just as relevant today as it was then) by the author who is handicapped himself, and is also the father of a handicapped daughter. It is reprinted from the Advocate, a magazine of the Autism Society of America.