‘This is the reality of having a child with Down’s Syndrome’

'Some people think Down's Syndrome is a catastrophe. Believe me, it really is not. The pictures in out-of-date literature handed to me at appointments just aren't reality'

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When Rachel Lowder’s routine ‘combined screening’ pregnancy test came back as a 1 in 9,500 chance that her baby would have Down’s syndrome, she said she “never gave [it] a thought after that” and, actually, didn’t really know what Down’s syndrome was.

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She had an easy water birth, and her baby, Eloise, was a good weight at 7lb 3oz. However, Eloise wasn’t feeding well and began to lose weight, so Rachel took her to a breastfeeding nurse, who transferred her to a neonatal nurse, who, in turn, asked her to see a paediatrician – who diagnosed Eloise with Down’s Syndrome when she was 10 days old.

Blood tests confirmed the diagnosis. And, says Rachel, “The shock was enormous, I just cried and cried. I cried for a baby I felt I lost. I cried for her future, our future, I was scared of the unknown and what life would now be like.

“The paediatrician sat talking at me and I can hardly remember any of it. I was in a daze.”

‘I decided to be proactive and positive’

Eloise was cleared of any health or heart defects but, Rachel says, as time went on, she felt some negativity from the health professionals around them.

“Most appointments I attended I felt were negative and there was an attitude of ‘she will do it when she’s ready’. I was not prepared to sit back and wait for her develop on her own.

“I felt like I was in a very reactive system, rather than a proactive one. I decided to be proactive and positive.”

When Eloise was 16 weeks old, Rachel took her to see a brain specialist in Devon, and she started the Snowdrop Programme. Eloise was given a programme specifically written for her.

Rachel’s posted regularly about the programme in a thread on our MadeForMums Chat forum that’s full of pics charting Eloise’s progress.

“We had to do small exercises with her 3 times a day, 6 days a week to increase brain function, hearing and so on,” recalls Rachel.

“At 9 months, Eloise started private speech and language sessions. This helped to develop the muscles in her mouth, and to form sounds.

“I also saw a private physiotherapist. Eloise was walking by 19 months old. Just after Eloise’s 2nd birthday, she was discharged from all NHS services and I was told [her development was] age-appropriate.

“I feel these private therapies gave Eloise the best start –combined with a lot of hard work from her, and surrounding her with positive attitudes, encouragement and praise.”

In terms of the cost of such activities, and how expensive they might be, Rachel has this word of assurance:

“All children with Down’s Syndrome are able to apply for Disability Living Allowance (DLA) from 3 months old.

“I have always put Eloise’s DLA into her therapies, which has paid for it all.

“People can use the money how they wish but I put it into private therapies and certain toys she needed to assist her learning.”

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‘At school, she’s Eloise, not The Down’s Kid’

Eloise is now 5 years old and has nearly finished her 1st year at school. She attends a small village school with only 3 classes, and, as Rachel puts it, “She is treated as Eloise and not the ‘Down’s kid’.

“Eloise has lots of friends and the school has supported her and worked with me to ensure she is supported but not smothered with help.

“She is able to sound her name, write her name and is working within the normal expectations of a child in Reception. I know she may struggle in the future with certain tasks or areas but she is a very happy little girl. She absolutely loves school, she is very bright and has lots of friends.

“If certain areas of learning are difficult or problems occur in the future, I will deal with them as they happen. I can’t worry about every aspect of her life. I wouldn’t do it with my other children, so why her?”

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‘All my tears have been replaced with smiles’

Rachel does get that being told you’re having a baby with Down’s Syndrome can be very difficult. 

“Even though I would never change Eloise, I do understand that people do choose to terminate [if they find out, while they’re pregnant, that they’re carrying a child with Down’s] and have their own reasons,” she says. “However, I don’t think the advice and support given at the time you find out is real life and positive.

“Trust me, the happiness Eloise has brought to us is massive. All the tears I wasted have been replaced with smiles: millions and millions of smiles.

“I really do feel the perception of people with Down’s Syndrome has such an out-of-date view now. Times are changing – and thankfully for the better.

“Eloise will now have the same opportunities as her siblings (Aiden, 9, and Isla, 3). She can live alone, get a job, and why shouldn’t she? I merely look at Down’s Syndrome as a learning difficulty.

“Some people think it’s a catastrophe but, believe me, it really is not. Now I’m on the other side, I really don’t understand why people are made to fear it so much.

“If there were a test for autism, ADHD or another learning difficulty, would 9/10 people abort? I doubt it.

“It makes me so sad that someone wouldn’t want a child because they learn at a different rate than another child. That could happen regardless of Down’s Syndrome.”

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‘Eloise has changed me for the better’

Above all things, Rachel says it’s vital that Eloise be seen for who she is – not for the fact that she has Down’s Syndrome.

“Eloise has changed me and all our friends and family for the better,” Rachel says. “The support we’ve had has been amazing and Eloise has shown me that having a child is just about love.

“All a child needs is love, support and positivity. Anyone can have a child with an illness or disability at any time in their life. You love them and do what you have to do at the time.

“Everything that Eloise has and will achieve is so special because I know how hard we both work to achieve things.

“Just be positive and believe they can do it. I always thought if she couldn’t sit or walk at a typical rate of a child without Down’s then that’s fine – but at least I know I tried and helped her as much as I could.

“I never ever imagined I would have a child with Down’s Syndrome or any condition. Yes, it crosses your mind but you don’t actually think it will happen to you. But it did happen to me.

“I wasted so many tears, worried so much. If someone could have shown me a little clip of what her life and mine would be like now, it is nothing that I had in my head. The pictures in out-of-date literature handed to me at appointments just isn’t reality.

“Eloise is Eloise, she’s not ‘Down’s’. She has Down’s Syndrome – a condition – just like a lot of children and adults.”

Get in touch

Rachel would love to help and support anyone who’s got questions about raising a child with Down’s syndrome. She’s set up a dedicated thread on our MadeForMums Chat forum, where anyone is welcome to post questions or ask her – and others – for advice and info.

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