Down syndrome: where there’s a will…

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Children with Down syndrome can surpass all expectations, if only they are given the chance. A mother tells her son’s inspiring story

Oliver Hellowell was born with Down syndrome (DS) and serious cardiac problems – so serious it was thought he might not survive to reach open heart surgery, which he underwent at 14 weeks. At 18 months, his physiotherapist reported that he had extreme hypotonia (reduced muscle tone) and informed me that although I should encourage a little physical activity, he would never be sporty.

At the special needs playgroup he later attended, it was noted with concern that “Oliver laughs and cries without sound”. When he was three and a half, it was reported that he had “verbal dyspraxia”, as well as the “usual speech and language delay” experienced by children with DS. They suggested it was therefore unlikely that his speech would ever be understood by an “unfamiliar listener”.

By the age of eight, Oliver had been the subject of several “informal exclusions” for challenging behaviour, and by eleven he had been diagnosed with ADHD. Although he thrived at mainstream school, his secondary placement failed and he attended a local special school for children with moderate learning difficulties (MLD), until he left earlier this year at the age of 16.

Depending on your experience and background, this may sound like a nightmare or an unfortunate story with a bitter ending – but, I assure you, it is neither.

Oliver at three and a half months, following cardiac surgery.I am Oliver’s mother. It so happens he was born to a woman who doesn’t respond kindly to words like “can’t” or “won’t”. To get him from his birth weight of 7lbs, 13oz to the target weight of 8½ lbs for cardiac surgery took three and a half months of breast feeding, bottle feeding, syringe feeding and spoon feeding – anything to get goodness into him. After he survived open heart surgery for three heart defects, I watched him grow from a frail, almost skeletal baby into a smiling, chubby little “Buddha”, and determined to do everything I could to ensure that he was as happy and able as he could possibly be.

Passion for reading

I started with flash cards and books before he could even really focus properly. He struggled terribly with making sounds so, whilst encouraging and requiring some sound production to get what he wanted, I also introduced signing from 12 months – although he didn’t start to use signs himself until 20 months. Once he could see that it worked, his sign language took off and he invented signs when we didn’t provide them quickly enough. My daughter Anna (eight years old when Oliver was born) and I used signing all the time and when he started mainstream primary school, Oliver had a signing vocabulary of 350 signs.

I used books and pictures at every opportunity – he was surrounded by them at all times and loved them all. I started matching words (just words, without pictures) before Oliver was three years old, using methods recommended by a DS charity. By the time he started school, he had a sight vocabulary of 70 words. In Reception, he was in the top reading group, even though he could hardly speak – he babbled and signed the words to show he knew and understood.

He was assessed by the educational psychologist who clearly didn’t believe that he could read or that he could understand what words meant. She spread out some single word cards, all of which were animals, and provided a large basket of toy animals. She turned to me saying “If I ask him to match the animals to the words, will he understand what I’m asking him to do?” She hadn’t even finished the question before Oliver had already got the idea and was placing the model pig on the card with the word pig on it. He went on to complete the set.

A growing boy

From a physical point of view, when Oliver was 18 months, I abandoned the standing frame provided by the physiotherapist, mainly because he hated it. I just believed that if the only time he stood was when he was strapped into something he hated, standing up would have negative associations. It seemed far better when he succeeded in pulling himself up to stand using the bars of a big old square play-pen and he would peer over the top, grinning from ear to ear and beaming with the joy of success. He was a bottom-shuffler and didn’t walk until he was 23 months old, only after which we all learned to crawl together on the floor, either me and Oli or Anna and Oli; I thought it was important that those neural pathways were laid – better late than never.

He learned to throw – food, dinner, plates, drinks, telephones – pretty much anything we didn’t want thrown. So rather than trying in vain to stop him throwing, I made sure he had access to things he could throw. I got those little basketball hoops you put on the back of doors and we took one with us wherever we went. Regular visitors to our house knew they would have to spend a significant amount of time taking turns throwing basketballs into the hoop during our conversations, as well as sitting looking at Oliver’s latest wildlife or marine encyclopaedia with him, as he pointed out animals and called out or signed their name (everything from tapirs and armadillos to leafy sea dragons and white tip reef sharks).

Developing interests

I continued to use anything Oliver was interested in to assist with his development, speech and physical activity. He was always encouraged to pursue every passion, and actively involving myself and others in his interests helped to further enrich his understanding and enjoyment of the many hobbies he was developing. If he wanted to look at the encyclopaedia of sharks and rays together at bedtime, instead of having a story, then we did.

He developed a fascination for history, so we visited endless castles and took great pleasure in reading all the information boards together to find out interesting facts.

A friend of my daughter left his skateboard at our house and Oliver was completely enthralled by it. The friend gave the skateboard to Oliver and, from the age of five, he started to sit on it and push it along in the living room, then stand on it wobbling. By the time he was seven, he was shooting along the living room carpet and wreaking havoc with my skirting board. At eight and nine, he was skateboarding on the path in front of the house and loving it.

To secure Oliver’s cooperation in routine aspects of our daily life, it also often helped if I could engage his interests. For example, we usually needed to have a game of snooker in the garage to help get him out of the house and into the car for school; moving from one environment or activity to another has always been a point at which we could have issues, so I frequently needed to introduce a bridging activity.

Oliver’s brief and failed placement at mainstream secondary school was an extremely distressing time for both him and me. Unfortunately for us, we encountered a headteacher who was about to retire and who couldn’t understand the point of having a child like this at his school, as well as a SENCO who seemed to have no desire to make it work. On one occasion, when a teaching assistant was asked why some of the suggestions made by the Specialist Advisory Teacher hadn’t been put in place, she whispered: “The SENCO told us we weren’t allowed to”.

His four and a half years at the local school for those with MLD did not produce the best outcomes for Oliver; he was not pushed academically and he absorbed and imitated more challenging behaviour than he had arrived with. However, we continued our work with him at home and out of school, devising innovative and creative educational opportunities. This culminated in his final year (Year 11) with Oliver only attending school for two days a week, spending one day at college, one having private maths tuition and one out of school studying for GCSE photography with his beloved Mike (now my husband), who is a professional photographer.

Lust for life

Oliver delivers his Best Man's speech at his mother's wedding.Oliver is now a 16-year-old young man who loves life. He is currently taking a level 1 art, design and media course at college and he dreams of being a wildlife and landscape photographer when he grows up. Oliver enjoys skateboarding, playing football, snooker and basketball, he likes watching extreme sports and he absolutely loves cars and girls. So, in many ways, he is just like any other 16-year-old boy. His bedroom contains three large bookcases crammed full of books and magazines on marine life, mammals, birds, cars, skateboarding, history and wildlife and landscape photography. He goes fishing at least once a week for most of the year and loves bird-watching and being able to wander in the countryside with his camera. He has just held his first photography exhibition, which was a great success.

His first weeks at college have not been without their difficulties, but the staff are determined to do their best for Oliver and have taken on-board every suggestion and strategy we have suggested. His timetable has been individualised and made more flexible, in close consultation with us, and we are moving forward positively.

The many successes experienced on Oliver’s journey so far, battling bleak and negative expectations and the various difficulties and challenges faced along the way, have come about because of the thoughtful and determined support of those closest to him. I do believe that there are people and institutions that have let my son down badly – and if things had been done differently, he could be doing even better – but without doubt, the refusal to accept negative predictions has been the major reason he has got to where he is today.

In June 2012, the young man who some said might never speak, stood up and gave the Best Man’s speech at my wedding. He did it with pride and he did it perfectly. Amongst an assembled party of some 70 guests, there was barely a dry eye in the house.

My son is not a particularly able child with Down syndrome. I know of many other children and young people with DS who are clearly more academically able and/or socially aware than he is. However, the real point is that Oliver is far more able than he might have been without the interventions and encouragement he has had.

It is vital that parents and professionals have high hopes, are positive and determined for these children, and are willing to go the extra mile. A creative and flexible approach is essential, alongside the determination to make it work. As the old saying goes, “Where there’s a will, there’s a way”.

Further information

Wendy O’Carroll (formerly Hellowell) is the founder and Chief Executive Officer of Ups and Downs Southwest, a Down syndrome support organisation based in Somerset and serving 12 counties:
www.upsanddowns.net

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