The Daily Mail reports on a story about a mum of twins – one of which has Down’s Syndrome – who has launched a scheme to help support his language development.
The Down’s Syndrome Association says that all children with Down’s syndrome find it hard to learn some aspects of speech, language and communication. Some children experience severe speech and language problems whereas other children find it less of a challenge.
Some children will have more difficulty with developing their grammar; others will find it hardest to develop clear speech. Know that children with Down’s syndrome will have a predictable profile of communication difficulties helps tackle these difficulties from an early age, offering them the best possible start to develop good communication skills.
The Daily Mail reports………………..
“Clare — a former marketing director, who lives with her husband John, 42, a finance manager, and older daughter Amelie, seven – describes how, as she cradled her newborn twins, she was given the news that every mother dreads: something was amiss with one of her babies.
“I remember looking at the doctor incredulously, thinking: “In my heart, I know everything will be fine.” She said Josh had a single crease across his palm and this was a sign of Down’s syndrome.’
Within four hours, a stunned Clare was told that the diagnosis — caused by an additional chromosome, the building block of DNA — was extremely likely. ‘The doctors talked round the topic and I had to keep saying: “You mean Down’s syndrome, don’t you? That is what we are talking about,” ’ says Clare.
‘Looking down at my two babies dressed in matching white Babygros, they appeared perfect. I struggled to accept that one baby was being described as normal while the other was being labelled as abnormal. I felt hugely protective.
“Looking at Josh, his tiny life just beginning, as he nestled into me, the whole thing seemed impossible.’
The doctors explained the situation was rare. There are no official statistics on how often one of a set of twins will be Down’s, but on support networks Clare has only come across eight other families like hers.
Research published in one medical journal found that in a group of 1,000 babies with Down’s, about 14 or 15 babies will be a twin or triplet, with their other siblings unaffected.
It’s a hard enough situation for any mother to come to terms with the fact their child’s life will not be as they had hoped. But how does it feel when one twin will quickly outstrip the other, a reminder of what could have been?
Clare is not in denial. She knows that while Josh’s quality of life is excellent now, his trajectory will not be as smooth as that of his sister.
While the twins are toddlers, the differences between them can be surprisingly subtle, but as they grow up, Clare realises the difference in their development will become more obvious to all, including the twins themselves.
‘As they get older, the gap will increase and it is likely Cara will go to school a year before him, though we hope to keep him in mainstream education,’ she says.
‘But right now, the interaction between Josh and Cara is heart- melting. She sees him as any other playmate — she involves him in all her games and tries to wrestle him.
‘There are also times she tries to mother him. When she is given a sweet, she asks for one for Josh. When we are changing his nappy, she likes to hand us wipes for him.
‘Because he is likely to have delayed speech, we are learning to sign with him and Cara is adopting this enthusiastically. Both children know around 80 signs. When adults talk to our children, Cara will repeat in sign and sound simultaneously to ensure that Josh understands.’
Clare and John have thought further ahead, too. ‘We’ve explored some of the things he will face by talking to other families. Many young people with Down’s have some employment, such as working at a garden centre, and that would be fine.
‘But I’m sad he won’t be able to have children. Down’s causes infertility in men. However, I hope he finds a girlfriend, probably from within the disabled community.
Clare’s attitude hides the fact that the couple struggled at first — her husband John was distraught.
She had asked the midwife to take both babies into a side room while she broke the news.
‘In a way, that helped,’ she says. ‘As John came in, he saw the cots were missing and assumed something was seriously wrong with one or both of the babies — perhaps that one of them had died.
‘Telling him that Josh had Down’s was maybe easier as a result.
‘He still says that getting the news was the worst point of his life, even compared with hearing of his mother’s death a few years before.’
Their reaction, says Clare, was due in part to their lack of knowledge about the syndrome — there are only 40,000 people in Britain with Down’s. ‘The less you know about something, the more unnecessarily frightened you are,’ she says.
‘John probably took weeks to accept the news, because we didn’t understand what it meant or what children with Down’s are capable of. I think John thought Josh would be in a wheelchair or that we’d never go on holiday again.
‘He was bonding, but grieving for what we were expecting. We were never angry at our lot, just perplexed.
‘We had a very happy life with Amelie, so John questioned why we had decided to have more children — especially as we had undergone IVF……………’
…………………“Apparently, 20 per cent of babies with Down’s are left in the hospital,’ says Clare, referring to infants abandoned by parents who cannot accept the reality of a diagnosis. ‘But that never crossed our minds. I think it was easier with him being a twin. We got the second child we wanted in Cara — the cake if you like. We consider Josh the cherry on the top.’
The first few weeks were a blur of tests and the couple were grateful to learn Josh was otherwise healthy with no additional birth defects. However, breaking the news to loved ones was less straightforward.
‘My mum said she had an inkling something would go wrong and she feared the worst. I think seeing Down’s like that is a generational attitude, though.
‘She associated it with children being hidden away who didn’t achieve very much.
‘Some of our friends were passing on the news for us, but we had to take control of that as there seemed to be an attitude of sorrow and we didn’t want that. We wanted them to understand about how positive we felt his life could be.
‘So we went on social media and explained that Josh was not ill or suffering — he was a happy and healthy baby. After that, everyone was hugely supportive.’
Another positive Clare took from the diagnosis was how well the health service is set up to support children with Down’s. ‘Because it is picked up so early, therapy begins immediately. Josh had his first physio session before we were discharged.’
Two years later, he gets physical therapy for his muscle tone, but it is his speech that is Clare’s biggest concern. Local NHS provision allows for Josh to attend just three sessions of speech therapy a year, so Clare has set up a scheme with seven other mums called Chattertots, which provides weekly language support.
Not everyone is kind. ‘Once someone told me gorillas have the single crease on their palms, too — I didn’t like that,’ says Clare. ‘And at Amelie’s school, some children were asking about my “son who is sick”. So I had to explain what Down’s means.’
Clare admits she worries that if plans for new, improved Down’s testing go ahead on the NHS as looks likely, more babies will be terminated at 12 weeks.
She points out that almost all parents of children with Down’s are ‘overwhelmingly happy’ with their children. ‘We really didn’t know what it was two years ago, but our understanding has changed massively. It is a tragedy that people like Josh are being terminated every day, and I worry about the pressure people are put under to make the decision.
‘Being a parent means starting on a path where anything can happen.
‘When you have a baby, they are reliant on you, but there is this gradual sense of letting go. With Josh that process will take longer.
‘Yet, we take comfort in knowing that we will, inevitably, be deeply involved with him all our lives.’
- SUPPORT Chattertots: mydonate.bt.com/fundraisers/ebdssg
For more informationa about Down’s Syndrome go to: www.downs-syndrome.org.uk
Written by Rachel Harrison, speech and language therapist, on behalf of Integrated Treatment Services.