Bringing up a child with Down's Syndrome: one mum's story

How is it different bringing up Henry from your other kids? But also - how is it the same?

"The thing that many people don’t realise is that there are a lot more similarities bringing up a child with Down’s Syndrome than there are differences.

"He's been brought up in exactly the same way that the younger two are. When he was a baby I’d be out and about meeting up with friends, going to playgroups and baby classes and just generally enjoying that wonderful feeling of the early months of motherhood.

"What Henry had in his early years in addition to my younger two was a few therapy appointments and sessions. We went to ‘portage’ (play therapy) group, a weekly speech and communications class and also a weekly session at a wonderful charity run organisation called SmallSteps which helps the children with both cognitive and physical development.

"On paper it may sound like a lot of commitment but in reality they were just like taking your child to a playgroup – everything was fun and exciting for him (and me) it was just that the activities had an underlying focus to aid his development.

"The sessions also had a huge benefit of introducing us to lots of wonderful parents and their children, some of whom have become some of our best of friends.

"When Henry started nursery and then school, these sessions all began to fizzle out. He either didn’t need them anymore or those aspects of therapy were covered in the educational setting. Now Henry’s free time is spent doing what any other typical 4 year old does.

"He enjoys the same things that his siblings do and has the same needs and desires. He goes to mainstream school, has swimming lessons, gets invited to birthday parties and play dates, loves watching TV and running around outside.

"He is very sociable and is happiest when surrounded by large groups of family and friends. He can play beautifully with his brother and sister and then the next minute it’s all ended in fights and floods of tears. Totally typical!

"What Henry does need in addition to my other two children is a little more patience and focus. There are obviously things which Henry finds more difficult, both physically and emotionally, so you are aware of them, and accommodate for them when needed.

"He can sometimes be unsure of new things or places so we know that we have to introduce them slowly so he doesn’t get overwhelmed.

"Physically he needs more help, his fine motor is still quite underdeveloped so he needs a bit more help with his cutlery and certain toys etc.

"And obviously because of his learning difficulties we spend more time practising his reading and mark-making etc. Some incredible learning programmes, designed specifically for children with Down’s Syndrome, have been created in recent years so it makes the learning easy to do, fun and productive."

What’s everyday life for you? What does Henry worry about / laugh about / cry about?

"Just about the same as any family with 3 young children – pretty chaotic – packed full of ferrying around to school/nursery, feeding, tidying, entertaining, and caring for the children.

"Our days start early – one of them usually rises at around 5.15am and then happily wakes up the other two so we have quite a lot of time to kill before the school run!

"Henry absolutely adores school. At the weekend and every day of the holidays he asks to go. I don’t know what that says about my entertainment skills at home?!

"School has helped enormously with some of the things that Henry used to find tricky. He often needs encouragement to try new things but going to school has helped his confidence and he’s now much more outgoing and independent.

"Henry does tire a bit quicker than the average 4 year old. His low muscle tone makes everything a bit more exhausting and after a long day at school he really does need to just sit and relax in front of the TV before we start dinner, bath and bed.

"His favourite is a CBeebies programme called Gigglebiz - a child's sketch show which he finds side splittingly funny and asks to watch it the minute he steps into the house!

"What to watch on TV has become a bit of a contentious subject between the boys as they now have quite different tastes.

"Wilf loves watching films but Henry’s concentration span doesn’t quite last that long. I try not to put two tellies on but sometimes it’s easier just to keep the peace!

"Henry adores the water, too. He has a swimming lesson every Saturday morning and gets so excited when he sees me packing his trunks in the bag. He is beginning to show such confidence, and now spends most of the time under water!

"Henry is a big fan of music and loves to sing and dance. A favourite game of the boys is to ‘put on a show’. We get demanded to sit in a specific place and watch while they perform songs and musical performances.

"And then the finale involves a very grandiose bow followed by fits of giggles. It’s really quite gorgeous!

What’s the biggest misconception you think people have about bringing up a child with Down’s Syndrome?

"I think the biggest misconception is that it is isolating and scary. People can be fearful of difference and how it sets you apart rather than looking at what it can add to your life.

"From the moment Henry joined us, we were surrounded by support and help. The hospital put us in touch with the local parent run Down’s Syndrome Support group – 21&Co – who immediately came to meet us.

"From that very first visit we knew we were in good company – a huge community who could offer support and advice which over the years has turned into genuine friendship and love. 5 years on I am now a trustee of 21&Co and so proud of what the charity achieves each year.

"There is no denying that in those first few days after Henry’s diagnosis, Tom and I felt scared. The future that we had imagined with our new baby suddenly seemed so daunting.

"Almost 5 years in, the reality of our experience couldn’t be more different. Henry has brought such precious perspective into our life which in turn has brought such genuine positivity and joy.

"Of course there are things that are harder for him, and for us, and there is no denying that some of the medical problems that can come with Down’s Syndrome are scary for a parent, but they are such a small part of the overall picture.

"I think the thing to remember is that there are a lot more similarities between children with Down's Syndrome and typical children than there are differences.

"They enjoy the same things and have the same needs – so the experience is what you make of it, whether you have a disabled child or not.

How do your children all get along?

"There is only 16 months between Henry and Wilfred which has produced a really close bond. They have quite different personalities – Wilf is very outgoing, extremely sociable, and in all honesty a bit bossy!

"Luckily for him, Henry is very willing to be led so the house games usually involve Wilf directing a game of pirates, knights or setting up obstacle courses etc. It often ends in a quick scrap and few tears but then its business as usual a few minutes after!

"Beatrix being the youngest idolises both of them and they find great joy in doing silly things to make her laugh. She was very early on her feet keen to join in the games and run around with them.

"Unfortunately she can also get on both their nerves by getting in the way, ripping up their train tracks and eating their toys. Hopefully things will be a bit easier in a few months.

"We talk about Down’s Syndrome very openly in the house. It’s important to us that the younger two grow up understanding the condition and why Henry may struggle with certain things.

"It’s lovely that we have so many friends with children with Down's Syndrome too so that they can see that Henry is far from alone.

"They have obviously never known any different and see our family life as totally normal. It does make my heart swell though when Wilf praises Henry for ‘good talking’."

Have you heard of the NIPT test – would you want to comment about it?

"We’ve obviously taken a keen interest in the uprising of the new non invasive test – NIPT. I have no negative feelings about the test itself.

"Surely more accurate information can only be a good thing. What I have great issue with is the press headlines about the test and the lack of balanced information surrounding it.

"The press have talked about the eradication of Down’s Syndrome, the debilitating condition, how people suffer from Down’s Syndrome. I can’t think of anyone on the planet suffering less than my son!

"The reality is that the onus to change the tide should be with the medical community to not present such a dire outdated view of Down’s Syndrome to prospective parents.

"You would not believe some of the things I have heard come out of medical professionals mouths. It is simply not all about medical facts on paper.

"These people have lives away from the hospital which are rich and fulfilling, for them and their families, whatever it is that they are able to achieve."

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