Eleanor is remarkable. I won’t deny that the first few months of her life were incredibly difficult. It didn’t take me long to realise, however, that she is the biggest blessing we could have wished for because she is our greatest teacher. She is the most amazing little girl and our lives have been completely transformed because of her.
We found out that Eleanor was a baby with Down's Syndrome when she was just 45 minutes old. She had a long stay in the Neonatal Unit but when we finally got to bring our baby home, we were supported. We do have some hard days, but these are few and far between. I do remember there was one day when I had one of my many phone calls about Eleanor that had been organised whilst my NCT friends were meeting in the park for a catch up. I just sat down on the sofa and cried that I had to do this. I knew though that while I haven’t got the straight, “normal” parenting journey that most people have, I wouldn’t change it. I remember my Mum saying to me that, although we look similar, all four of her children are incredibly different and we have all taken different paths. That’s how I see our journey. Eleanor doesn’t have special needs, she has different needs and will take a different path.
Others, even family, struggled at first with our news. Many have had to face up to often unconscious prejudices and misunderstandings that they have about Down's Syndrome. I remember one family member telling me not to worry when Eleanor was tiny because “she would grow out of it”.
It’s the language that some people use that can hurt. Don’t get me wrong, I was probably guilty of it in the past. I don’t think I realised how powerful particular words can be. When I took Eleanor to be weighed when she was eight weeks old, the health worker said to me: “Just bear with me, I’ve never weighed one of them before.” I was so shocked. She was talking about my baby as if she was a different species. I don’t know what came over me but I did find the power to say something. I just asked, “What did you just say?” and she repeated her words. I told her to get the manager and explained. Guidance went out after that to health centres across the county.
I also had a lot of people questioning why we didn’t get a test for Down's Syndrome. We had the standard test but it didn’t show any chance of Down’s Syndrome. People also say that they’re not sure they could do what we’re doing. My answers are simple. A test result wouldn't have changed the outcome for us and, if Eleanor was your baby, you would do exactly the same as me.
Time seems to be flying at the moment. Eleanor, has started pre-school this year. It’s the same school that her Daddy went to, which is beautiful because she is a Daddy’s girl. She is so happy, though this morning did have a wobble when I took too long to say goodbye.
Eleanor is educating people around her simply by being herself. She attends a mainstream school and being with a mix of children hugely benefits her. But it benefits all of the children. One in nine children have some form of disability so that’s eight children who can learn from our amazing daughter.
Education is essential so that the wider public stop underestimating people with Down's Syndrome, or, worse, pitying them. We went to a food festival in our town recently and I heard a constant hum of “Oh dear” or “Oh bless her”. I just feel like shouting “No “Oh bless her” thanks!”. Eleanor is a little girl having the time of her life. There is no need to feel sorry for us! I think the Jo Jo Maman Bebe campaign that Eleanor was part of last year absolutely epitomised this. The pictures show my beautiful girl beaming into the camera. I will keep reaching out to companies to include a diversity of children for this reason. It is so important too for children like Eleanor to see themselves represented.
Beyond school, all I want is for Eleanor to be happy. The world is changing so if she can have her own job, that would be great, and live as independently as possible, that would be great too. My husband wants her to compete as a swimmer at the Special Olympics. I’m not sure about that myself and besides that, I have pointed out that it would be me having to take her to all of the training!! It is amazing the things that she can do now, which we were told she wouldn’t. It’s simple really. Children like Eleanor can do whatever they want to do whilst, all the while, teaching everyone else that she’s just like them.
(Words of Helen Manton, Eleanor's mother. Written by Katie Scott)
If you have enjoyed reading this please follow more of Eleanor's story over @the_mantons on Instagram. If you find yourself reading this having just received a pre or post natal diagnosis of your child having Down's Syndrome contact Positive About Down Syndrome and the Down's Syndrome Association.