‘It’s a positive story and shows life is good for Michael’
When Virginia native Avril Smith was raising her son Michael, who was diagnosed with Down syndrome at birth, she found his life opportunities reduced as he got older.
As there were no guidelines to follow to ensure Michael, now aged 26, received the best education and care in life Avril was forced to discover for herself the path that maximised his opportunities.
She decided to document her experiences in a book - ‘Michael’s Story’ - she wrote alongside her son to share their learnings with as many parents of kids with Down syndrome as possible.
“When he was born, I found a lot of books on early intervention that told me of problems to look out for. I didn’t want to read those because they were too depressing. We decided to find our own pathway. There is nobody there to tell you what to do.
“The book shows the challenges of growing up with Down syndrome, what we had to overcome, as well as Michael’s goal. It’s a positive story and shows life is good for Michael.”
Avril says that Michael was helped by going to a good primary school, where the principal was willing to do everything he could to help him.
“When he went to primary school the headmaster said to me, ‘I’d be very happy to take on Michael, but have you got fight in you?’ I said yes. He said ‘That’s good because you and I will have to fight with the Department of Education all the way’.
“He was just amazing. I never had to fight when Michael was at primary school. The headmaster did all the fighting for me.”
However, once Michael progressed from there, Avril recalls that is when the challenges set in. Options for children with Down syndrome become fewer and fewer upon completing primary school.
“Once they hit the 10, 11, 12 you’re in limbo and you have to find your own way. When you’re finished secondary school the choices are quite low. You go to service providers or adult courses or you can do Down syndrome courses. But you’re clutching at straws trying to find out where to go.
“We wrote a book to let people follow our guidelines. We have these choices, but nobody told me - I found them out the hard way. Now the book is there to help people find these out an easier way.”
Happily Avril did ensure Michael left school with a good foundation in reading and writing.
“We joined ‘St John of God’ in Blackrock and did adult courses. He now works three days in Dunnes Stores in Blackrock and attends adult services three days a week. On Sunday he goes swimming.”
While Avril is from Virginia, which she lauds for its “wonderful community spirit”, she observes that living in Dublin has its advantages for parents of kids with special needs.
“Dublin is probably the best place to be for someone with Down syndrome, especially as an adult because the service providers are exceptionally good. Michael has great opportunities because he’s had so many social activities and different groups doing various things such as art club. People do these things in rural areas but it’s easier in Dublin.”
Better public transport in Dublin also means services are more accessible for Michael.
“If we were living in the country, Michael would never have been travel trained. But because we lived in Dublin, he has spent years using public transport so he can travel independently and is able to go out on his own.”
Despite the challenges faced, Avril says society is increasingly accepting of people with Down syndrome.
“In the 1960s people didn’t know how to react to somebody who had special needs, but now children like Michael have been integrated into normal primary schools. Other children accept him just for being himself. They don’t see the disability, they just see the person which is wonderful.”
While lockdown proved a difficult period Avril and Michael made good use of it by co-writing the book.
“He sat down with me and we went through all the memorabilia and put the book together,” recalls Avril who has a diploma in creative writing.
“I’d read it and he’d say ‘Mum change this’, or ‘Add this in’. I think we’ve always had a good relationship. It was a nice time to spend together, especially over Covid.”