Tim

Paul Carter
Ups & Downs, p. 227-34
Penfolk Publishing, Australia (2000)

Reprinted with the permission of Catherine Courtney, Editor

If you are the father of a boy with Down syndrome, be proud; he needs you more than anything. Don't be afraid to cry once in a while, but don't feel sorry for yourself or your son. He is the way he is.
I watched Tim being born and found it to be just as exciting and emotional as when I had watched his sister's birth four years earlier. Everything seemed fine, all intact so to speak, and apparently normal.

Tim and Jessica Carter

When I heard the doctor say that Tim had been born with Down syndrome, I really didn't know what it meant, except that I thought it implied that he would have a short lifespan. Once I realised what Down syndrome was, my first thought was how to help Fran, my wife, cope with the ordeal. I figured that was more important at that stage, especially as Tim could not be changed to something else. Anyway, the days unfolded and before long mother and baby were healthy enough to come home.
I didn't dwell too much more about Tim's disorder at this stage. After all he was healthy, looked pretty normal and was our son. However, over the ensuing years, I have experienced every imaginable kind of thought about Tim. There have been two major themes to the flashes that run through my mind. The first concerns Tim himself and his personal development—how he'll manage, whether or not he will live independently, or if we'll always have him at home with us. The second, and more powerful question, has concerned my own perspective of normality and my private sense of grief. Coming to terms with the knowledge that my interaction with Tim will always be different to other fathers and their normal sons, has been an ongoing difficulty. I am not bitter or angry about the situation, but probably feel a little cheated in some respects. Nevertheless, I am proud of Tim and the progress he has made to date. I was thrilled when he learned to walk, and excited again when he began talking. He is a tough little kid, both physically and mentally. Tim is a real battler. I honestly believe that he will be a great achiever who has already accomplished much.
I've cried many private tears over him, mostly because he is such a good boy who doesn't deserve to have so many obstacles in life.
I felt entirely helpless when I watched him wheeled into the operating room for heart surgery when he was just over three years old. He lay on the trolley and looked as defenceless as I felt. I should not have doubted his strength and resilience because within a few days he was off to McDonalds to enjoy his favourite meal of chips and Coke.
Tim is now participating in kindergarten and commences mainstream education in 1995 along with all the other local kids. I think he will cope better than the teachers. Over the years I've observed other people reacting to and interacting with Tim. Fortunately, most people accept him as an individual with his own personality. Tim is funny, affectionate, intelligent and bloody-minded at times. He always wants to be independent, and in most cases he manages as well as any five-year-old could be expected to.
Unfortunately, a few people look at Tim and their faces say it all. They see him as odd, different, not normal, nor fitting society's acceptable mould. Nothing is said, but you know what these people are thinking. It's a relief that this type of person is in the minority, and quite honestly I believe they are driven by ignorance and a false sense of values.
Tim has given me inspiration and humility. He has shown me what courage and determination is all about. I would die for my boy Tim, and I feel very protective towards him at all times. On the other hand, I feel he must be strongly encouraged to extend himself in everything he does, so as to keep up the momentum of progress.
Both Fran and I treat Tim as a normal child in most cases, and we'll continue to do so until he demonstrates that he is unable to be further extended. Tim can swim in a dog paddle style, he can ride a tricycle, count to ten forwards and backwards and knows his address and phone number. He climbs like a monkey and talks the pants off a kangaroo most of the time. Tim is a great thinker! He has a brilliant memory and can play-act remarkably well. These are all the qualities of a child who has the capacity to take quantum leaps if encouraged and stimulated.
The love and concern of his Mum, Fran, is the motivating force behind Tim's achievements to date. She has spent every possible moment with him, teaching, stimulating and encouraging him. Because of insufficient time at home, I often feel inadequate with Tim. I would love to have the time to interact with him and teach him as much as his Mum does.
Of course Tim is no angel all the time. He has a bad temper, he spits at times and is grouchy. I guess he is like normal children. Most of his bad behaviour bouts are due to boredom and frustration. He is ready for school and to cut loose in the garden. Now that summer is nearly here, we'll let him out more often, and for longer periods. He has to be supervised because we have a large property and Tim likes to just go, go, go! I worry about how Tim will get on at school and deal with the various situations with which all kids have to cope. Equally importantly, I wonder how far he can be educated. Our next project is to teach Tim keyboard skills on computer. I am sure he will enjoy the challenge. I worry about how vulnerable he'll be. There is always someone out there waiting to rip off the less astute and less capable members of society. How many knocks will he have to endure?
How far must we provide for him? I'm convinced that the best will happen as long as we make the effort.
Tim is a special boy. He's my mate, and I'm his and he knows it. I know several other fathers of boys with Down syndrome and they too are very proud of their sons. Conversely, I also know of other kids who live in institutions and have never known their parents. In my view these kids do not progress to the same degree as children who have been reared in a home environment. It is a sad but true fact.
I rarely let on to people that Tim has Down syndrome. I prefer people to meet him as he is and hope that he is accepted. Ninety nine times out of a hundred he is well accepted and people become very fond of him. Those who don't approve of him, well ... they can go to hell as far as I'm concerned.
I often look at Tim and think that if people had a bit of Down syndrome in them, the world may be a happier and more peaceful place. Tim teaches me to look at myself all the time, and to learn to be more tolerant of circumstances that present themselves.

August 2000

Seven years have now passed; Tim is turning twelve and the journey until now has been no less challenging than his first five years.
He is still as bloody-minded as ever and as sharp as a razor. Unfortunately, his behaviour has been our biggest challenge—and his biggest impediment.
Whilst Tim started well in mainstream schooling he has recently transferred to a special school, not because he isn't intelligent but his stubborn and controlling behaviour has prevented him from learning with others. The sad part is that his behaviour has been diagnosed as Attention Deficit Hyperactive Disorder. Nothing to do with Down syndrome.
Mainstream school staff have been unable to separate his behaviour from Down syndrome and have consequently been unable to cope.
We have learnt that most teachers are insufficiently equipped to manage Tim and the school culture prevents him from participating to his full potential.
Is there prejudice in schools? You bet there is; it's alive and well! How many times have I heard, 'Kids with special needs belong in special school.' Kids with disabilities easily recognise those teachers with prejudice and consequently don't learn.
Tim can read and write, holds a good conversation and is very independent, but he can be shy and tends to have difficulty socialising with others. Any help he can give around the house or garden is a great reward for him. It makes him feel proud.
He has taught us so much about real life—how to beat the odds whenever they arise.
Jessica, his sixteen-year-old sister, has contributed remarkably to Tim's development, but I think he has also taught her a thing or two.
Tim played soccer for a couple of seasons, but the other boys progressed too far for him to keep up. He also tried Little Athletics for a time, but the same thing occurred. His refusal to compete 'on cue' made it impossible for him to continue.
Whenever we went out, Tim would run away; this finally stopped a couple of years ago. He would also run away from the house, so for several years we were locked in our own home like prisoners to keep him safe. Fortunately, that too has all ended now!
Fran and I are older and greyer but so much wiser from our life with Tim. He is a young man going into puberty ready to embark on the next stage of his life. I love him dearly and I am very proud of his achievements.
I'm looking forward to the next few years because I still believe that he will successfully and independently integrate into the community.
I have contributed to this book by trying to relate some of my thoughts, emotions and hopes for our son. I just wanted to say how I feel about Tim without being academic or moralistic. But if I had to leave a message it would be this: 'If you are the father of a boy with Down syndrome, be proud; he needs you more than anything. Don't be afraid to cry once in a while, but don't feel sorry for yourself or your son. He is the way he is. Above all, seek out other parents of children with Down syndrome and talk and socialise—it helps a hell of a lot! But I believe the most important thing of all is to help and support your wife. My boy's mother is a hero and deserves the highest accolades.