‘It’s a nightmare when you find out your baby has Down’s Syndrome but I wouldn’t change things now for the world'
More needs to be done to improve the |quality of life for children with the condition as three local mums tell Stephanie Bell
A host of special events and parties are taking place in towns and cities across Northern Ireland this week to mark Down’s Syndrome Awareness Week. The main point of the week is to raise awareness that people with the condition want and need opportunities to grow and develop as adults.
For organisers, the Down’s Syndrome Association, this means jobs and while the charity has campaigned for years to improve the quality of life for people with Down’s, its Northern Ireland director Donna Lynch says more needs to be done.
Throughout the week, the public will be asked to support special fund-raising appeals but Donna is eager to ensure people are also made aware of the ongoing battle to allow people with Down’s Syndrome to contribute to society.
She says: “People with Down’s Syndrome have had to fight to get their rights like many disadvantaged groups in society. We now see them in all areas of society — attending mainstream schools and working in various jobs — so yes, we now see people with Down’s Syndrome participating in and contributing to society but everything is not rosy in the garden.
“Some children with the condition are born in to families where there are lots of social problems, alcohol abuse, long-term unemployment, drug problems, neglect and sexual abuse.”
Donna also lists other major areas of concern including clinical depression, severe anxiety and behavioural difficulties among young adults and prevalence of Alzheimer’s among people in their 40s who are in need of services which she says they are not getting.
There are also fears about a growing population of elderly parents still caring full-time for adult sons or daughters with very little support or help.
A lack of services for speech and language and physiotherapy is another concern.
Donna adds: “We have children who have a dual diagnosis of Down’s Syndrome and Autism; we have people who have Down’s Syndrome and a physical disability — the list goes on.
“In 2012 we want to be realistic about people with the condition. We want to ensure that as a society all people get opportunities to grow and develop and that all individuals with Down’s Syndrome lead happy fulfilling lives where they are loved, love others and are valued as human beings.”
Fear about the many challenges their children will encounter in society as they grow up is still the overriding concern of most parents with Down’s Syndrome children.
Three mums today share their individual stories of the joy and the heartache of raising a child with Down’s Syndrome.
‘Things we take for granted are just a little bit harder for her’
Sharon Lappin (40), a full-time mum and Paul (42), a civil servant from Newtownards, have one daughter, Darcy, aged five. Sharon says:
After Darcy was born she was taken straight to special care because she was not breathing so I only got a quick glimpse of her.
The pediatrician came in some time later to ask us if we had noticed anything about our baby and I remember commenting that I thought she had my chin.
She then told us they suspected she had Down’s Syndrome. It was such a shock to both of us. It had never entered my head and I had never known anyone with Down’s Syndrome so I knew nothing about it.
It’s a bit like grief because you have all these plans and suddenly nothing is going the way you thought it would.
It really does take time to get over the shock. You don’t know what to expect for your child and there is a lot of fear.
Even now it still hits a raw nerve.
I got in touch with the Down’s Syndrome Association and they were great. You want to do the best for your child no matter what and I was worried about the stigma which even though it isn’t as bad now, still exists.
I worried about what people would think when they saw her and I worry about how she will get on at school.
All I want is for Darcy to be happy and not be bullied. That really worries me as I know kids can be cruel to each other and kids can be very sensitive as well.
Darcy really is a wee star and is very friendly, a real wee people’s person. She is like my wee sidekick, she goes everywhere with me.
She goes to Rainbows in the Girl Guides and Newtownards Nursery.
She was over three-years-old before she walked which was hard and her speech is slow. Things that we take for granted are just that wee bit harder for her.
I am very protective of her and I don’t have expectations as I know she will do things in her own time.
It is a nightmare when you first find out that your baby has Down’s Syndrome but I wouldn’t change it now for the world. She brings us so much joy.
‘There have been some challenges but there has been more joy’
Jill Moffat (51), a carer for her husband David (54) who has Multiple Sclerosis, lives in Dundonald. The couple have two children, John (19) and Emma (17). She says:
John had breathing difficulties when he was born and had to be taken to special care. My husband was brought out of the room and told he had Down’s Syndrome.
When he came back in and before they told me, the look on his face made me fear the worst. When they actually told me, I was relieved because I had been thinking my child was going to die.
It was still a shock and upsetting for both of us as we weren’t expecting it and we didn’t know anything about Down’s Syndrome. When we got John home a week later, it was a matter of trying to find out as much as I could about it. I contacted the Down’s Syndrome Association and they were brilliant and I very quickly joined my local support group and met other parents.
There have been challenges but there has been more joy. John went to mainstream school and got three GCSEs.
He is now at Tor Bank Special School and when he leaves there next year he hopes to go to Belfast Metropolitan College to do a life skills course.
I pushed and pushed for him to go to a mainstream school as I thought that would be best for him but while he did do well academically, socially he was isolated. He had a couple of wee friends but he was teased and bullied and he still talks today about being bullied at school.
If the world was a perfect place, integration would be excellent but unfortunately the world is not a perfect place.
My hopes for his future are that he will be able to live semi-independently but there is not enough sheltered accommodation.
He is in many respects a typical teenage boy. He loves girls and recently came out of a year-long relationship. I think he would make a good partner as he is kind |||and thoughtful. He is a very active teenager who loves football and bowling and reading and knows everything there is to know about Dr Who.
He is very witty and loves winding people up and what surprises me about John is how very sharp he is in answering back.
I don’t think he will ever be able to work full time but I would like to think he would get a part time job.
He has been an absolute joy to all of our family.
He is great company and where mums of other boys his age might be worrying about their sons going out and getting drunk or getting into trouble, I don’t have that worry with John.
John is a joy and a treasure.
‘She brings a smile to my face every day and a tear as well’
Mary Hunter ( 47), a full-time mum from Ballymoney is married to Mervyn (49) and they have two children Adam (18) and Hollie (9). Mary says:
When Hollie was born I was really positive from the start even though I didn’t know much about Down’s Syndrome. To me she was just my wee girl. My husband was really shocked and had no concept of Down’s Syndrome either.
We didn’t know at that stage if she would walk or talk. I had a really good health visitor who put me in touch with a girl in my area who had a two-year-old boy with Down’s and she came to visit me.
I also contacted the Down’s Syndrome Association who were great and were always there at the end of the phone. They sent a monthly magazine with details of courses on speech therapy, behaviour etc and I attended them all. I just wanted to get as much information as I could.
I also joined my local Causeway Down’s Syndrome Support Group of which I am now vice chair. No one can tell you what to expect and with Hollie the main challenge was delayed speech.
When she went into Primary One she was also diagnosed with verbal dyspraxia. She only really started to put words together last summer when she was eight.
That was a real struggle for all of us and we’ve managed mainly by using sign language. Hollie is in P5 at the mainstream Irish Society School in Coleraine who have been very supportive.
We have been blessed by an amazing one-to-one classroom assistant who has been with her since nursery, which has made a big difference in Hollie’s life as she has a great rapport with her.
The kids in Hollie’s class have also been great as they have grown with her since nursery and will look out for her and give her the extra time she needs to do something when they are playing with her.
She is a very sociable child and goes to ballet, Girls Brigade, swimming and she used to go horse riding. She loves skipping and riding her bike and is very much an outdoors person. She loves to dance and listen to music.
Sometimes it is hard to know if you are doing the right thing by putting her in mainstream groups but there are no activities for special needs kids of Hollie’s age in our area which is something as an Association we hope to change.
I try not to look too far ahead but ideally I would like Hollie to be able to live independently when she is an adult so I know that if anything happens to us she has her own wee home and environment.
I truly believe that Hollie was given to us as a family for a purpose. She has changed our lives in so many ways and put us on a very different road which has introduced us to really good people who give up their time in a voluntary capacity to help others.
She brings a smile to my face every day and probably a tear as well. She is a darling. All children are different and I try to treat her no differently.
the one-in-a-thousand syndrome
- Around one in every 1,000 babies born in the UK will have Down's Syndrome.
- There are 60,000 people in the UK with Down’s Syndrome.
- The chances of having a baby with Down's Syndrome does rise with age but the majority of births are still to women under 35.
- Since 2000 the birth rate has increased, reaching 749 births of children with Down's Syndrome by 2006, the latest year for which figures are available.\[n.wolsey\] The increase is spread across all age groups.
- Down's Syndrome is caused by the presence of an extra chromosome in a baby’s cells. It occurs by chance at conception and is irreversible.
- People with the syndrome will have a degree of learning difficulty. However, most\[n.wolsey\] people with Down's syndrome will walk and talk and many will read and write, go to ordinary schools and lead fulfiling, semi-independent lives.