Southend U3A

My Boy - Jill Lane

October 2011

[Jill Lane has a Down Syndrome son, Tony. She has not only written this lovely biography,
but has bravely given permission for it to be included with our stories this month.]

My son was born on the 24th of February, 1975. We were living in the Northern Territory of Australia. When he was handed to me, I looked at his little face, and loved him immediately. He wasn't crying, he had such a placid, contented look on his face. The nurse took him from me, it seemed he had trouble breathing, but all seemed well when she brought him back.

When Tony was one day old, he was diagnosed with a heart murmur. When he was two days old, I was told he had a weak muscle tone, but we would have to wait for a paediatrician to come from Darwin. We waited ten days for him to arrive; he then told us Tony was Down Syndrome.

He was such a good baby, only ever cried when he was hungry. Then his heart problem became very obvious; when you were held him, you could feel his heart beating rapidly against you. His weak muscle tone was no bother really, well, not to him, but it meant I had to carry him all the time.

During the first two years of life he had lots of chest infections, apparently because the bridge of Down's babies' noses are inclined to be flat, and so harbour germs. The day finally came when Tony was just over two; he walked on his own, what joy! I didn't have to carry him everywhere! The joy was short-lived though, I now had to retrieve him from everywhere.

We returned to the U.K. for a holiday when Tony was three. The holiday itself caused problems, as we were told, that as we held U.K. passports, we may be refused entry back into Australia, but as Tony was an Australian citizen, he would be allowed in . . . Errmmm!

The problem was solved. We had to become Australian citizens. That was arranged. During the service we had to swear allegiance to the Queen, even though the Queen is queen of my own country!

Once back in the U.K. I had reason to take Tony to see the Doctor. Although the Australian Hospital said they would operate on Tony when he was twelve, the Doctor here said Tony probably would not live until he was twelve, and should have had the heart operation when he was one year old. As a result Tony had his operation in Brompton Road Hospital when he was three. After that he became much more active and alert. I first noticed this that day I took him for a walk; we passed a bus stop queue and I happened to know the lady at the front of the queue, so we had a chat then said goodbye. The Downs kids are very loving, and Tony wanted to kiss her goodbye; that was fine, but then he proceeded to kiss the whole queue, and they all kissed him back!

Now Tony is four, and it's Easter Sunday; my friend and I wanted to go to the church service, so we took Tony, hoping he would behave. All went well, until, halfway through a prayer, everyone kneeling, a young voice echoed round the church, 'Gone to sleep, Sue?'

Now Tony is five and quite confident at school, and his character is starting to emerge; oh dear – the head mistress is phoning again! It seems that all the lights in the school went out . . . well, I think it was the caretaker's fault for leaving the cupboard door open, Tony thought he was helping him when he removed the fuse, then locked the caretaker in the cupboard. Shortly after that while the hall was being redecorated, when the workmen came back from lunch, their pot of paint had vanished. Everyone searched high and low for it to no avail, so the workmen went home. It was found the next morning, under Tony's desk!

Tony is now have six, he comes home from school one day quite upset, 'What's the matter' I asked. His best friend at school, David, had to go into hospital. 'Why?' I asked, 'He has to have comics put in his ears.'

For the next few years, Tony seemed to suffer a little bad health, his heart valves started leaking again, and we discovered only one kidney was working. During this period he had a terrible attack of cellulitis; the Doctor wanted him to stay in hospital, but Tony wasn't having any of that, 'No!' he said, 'Going home – 37, Pembury road, Westcliff.' The Doctor gave in and said, 'Perhaps you will be better going home with those who love you.' The next day when we took Tony back, the Doctor came to have a chat with him, during which time he asked him, 'What do you want to do when you grow up, Tony?' Tony said, 'I am going to be a hoctor!'

'Oh!' said the Doctor, 'Where do you want to be a hoctor?'

'In the hospolittle' replied Tony - so if you see a hoctor in the hospolittle then that's my boy!

To finalise I would change to a Down's girl. Her father had died, so her mother said to her, 'Daddy has died, he has gone to heaven; it's lovely there: beautiful flowers, everyone is happy, no one is ever ill.' So the Downs girl looked at her mum and said, 'Alright then, you go I will wait here!'