'My daughter and Down's syndrome'

Monica Rivers, 34, a charity worker from London, describes family life with her daughters: Ayesha, six, who has Down's syndrome, and her sister Erin, aged three.

"It's so exciting to see Ayesha do things, especially things that people think she can't do. She loves reading to people, and it's amazing watching her read to her dad. She doesn't struggle at all with the words."

Singing

"She enjoys singing and dancing, and being the centre of attention. She's tone deaf, which can be interesting in the car. Some people with Down's syndrome have heart problems, but Ayesha doesn't; her hearing and vision are fine. We did worry she wouldn't be able to walk but she walks very well, although she didn't start until she was two. 

"There are some things she finds challenging. She'll struggle with a zip and she puts her shoes on the wrong feet, but then she'll cross her legs and say, 'They're on the right feet now!'

"Ayesha can get frustrated with some tasks. For example, her little sister Erin can do her own shoes and jacket but Ayesha can't."

Coping with problems

"But Erin is so loving towards her big sister. If Ayesha starts to get upset, we just talk her through it, let her have another go, then ask if she wants us to do it. We go back to the task and try again another time.

"When Ayesha was a baby, a portage teacher visited us at home every two weeks until she was three. Portage teachers specialise in helping kids with disabilities and their families acquire the skills they need to do everyday things.

"There were wooden toys with different colours that Ayesha had to match up. It's easier for kids with learning disabilities to understand sensory things, so the teacher used materials that were soft, textured or shiny."

Physiotherapy classes

"We also went to classes for parents, funded by the local authority and run by a physiotherapist. They had sessions on helping your child with walking, sitting and eating, for example. It was great, and really positive for the kids because they felt they were achieving targets.

"Once they ate yoghurt in front of a mirror, so they could see what they were getting wrong when they spilt it. It worked very well for Ayesha!"

Going to school 

"Ayesha started mainstream school at four and has a statement of special educational needs from the local authority. As a parent, you want your child to go out into the community, and mainstream school is the community. I wanted her to have as much support at school as she had at home. I felt that a statement would help achieve this.

"We weren't given one the first time we applied, but by the time we tried again I was working at Mencap and had a better understanding of what to write in the parents' statement to make sure we got the right support for Ayesha.

"We finally got the statement in May 2008, and it says she should get 25 hours of extra support a week. It's really benefitting her. The school staff go on courses to learn how to help her learn, and there's an extra adult in the classroom.

"It can be hard for Ayesha to adapt to change. For example, she's had different support workers at school. We think this might have caused some behavioural problems, such as slapping and kicking.

"To help her adjust between school years, she had a transition book, which has pictures of all the important people at school. We talked her through it as many times as we could over the summer.

"There are some challenges at school. We're trying to find out if she's being bullied. She has come home upset and we've learnt that she's been called an idiot. Her friends have started moving on to older things, while she's still happy to watch CBeebies. Her best friend is noticing a difference in their interests.

"It can sometimes be upsetting, but we're working closely with the school. If we support her now she'll be stronger if there's a next time."

Having fun

"Ayesha does out-of-school activities, such as swimming and horseriding, but she knows that if she misbehaves at school then she doesn't get to go. We've always tried to find the right activities for her so that she can be with other children. It's good for her, and the more people are aware of anyone with a learning disability, the more we help to break down barriers.

"Whatever she wants to do, my husband and I will support her to try to achieve it. She wants to be a dentist or a firefighter. I have a child with ambition, and while I know the potential limitations, if that's what she wants to do then we'll help her.

"My advice to anyone who has just been told their child has a learning disability is to find out as much as you can. Talk to other parents of children with a learning disability. You can ask your health visitor if there is anyone in your area, or contact Mencap to find a local parents' group.

"Don't feel it's the biggest challenge you'll ever have to face, or an awful thing. I wouldn't change Ayesha for the world. She's a pleasure, for us, for school, for her sister, for everyone."

As your child grows up

Gail Hanrahan's son Guy, 19, has Angelman syndrome, a rare genetic disorder which means that he has little understanding and no speech. 

Read Gail's story of preparing for her son's transition to adulthood.

Page last reviewed: 20/05/2013

Next review due: 20/05/2015

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The 2 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Pinkel said on 25 March 2013

Did you know that Down's syndrome is named after the British physician who described the syndrome in 1866, although the faulty chromosome was not discovered until 1959. Older parents have a longer time in which damage to the chromosomes can occur, and this may explain the higher incidence with age. The risk of Down's syndrome rises from 0.1% for a 20yr old mother to 1.6% for a 40yr old mother. Actually, the age of both parents, not just the mother, has a bearing on the risk of inheriting Down's Syndrome. The condition is caused by an extra No 21 chromosome which arises when a pair of No 21 chromosomes fail to divide and some or all of the cells in the fertilised egg have three No 21 chromosomes instead of 2; this type of defect is know as trisomy 21. Not all of the cells in the body necessarily have this defect, hence the variability in Down's syndrome characteristics.

Down's syndrome can be detected at the embryonic stage by sampling amniotic fluid from the uterus; this is done by using a hollow needle. Cells from the embryo, found within the fluid, are then examined under the microscope and chemical tests may also be carried out to identify defects in the chromosomes.

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JohnFromTameside said on 17 February 2013

That's the most irritatingly non typical account of what it's actauly like for most parents who have a child with down syndrome that it almost made me vomit. While it's not the end of the workd to have a DS child, my daughter walked independently aged 5 has problems with her ligaments and recently had to have full open heart surgery to close three holes in her heart. She struggles with communication and finds it difficult to engage with other children as she is also affected by Autistic Spectum Disorter. While I would NEVER put any one off having or adapting a Downs Syndrome child, this artical is very biased towards the "Happy". For me the reality is somewhat different and much more challenging. I don't think this story is a true reflection of live with a DS child and I think it's most unhelpful and misleading!

Much better and more balanced information is available from the Downs Syndrome Group (DSG) website so I'd rather you remove this over-optimistic drivel and replace it with a link to their site and add one for "Downsed"

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Media last reviewed: 11/03/2013

Next review due: 11/03/2015

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