Pearl’s story by Rosa Iggulden (doting sister)

Written by Erika Petrie

September 26, 2020

Pearl is incredibly feisty for a girl of nine years old, but you could say that comes with being the youngest in a family of six. For someone small for her age, she is strong as well, like super-human strong, she can lift nearly all of us on her back, be it for a second.

There are so many emotions flying around when any child is born, but especially a child with Down Syndrome, but really the “oh my gosh, she is the cutest thing I’ve ever seen!” was the prevailing memory. As a family who have all been around and had experience with individuals with learning disabilities, it was obvious to us from the moment she was born that she had Downs, that of course didn’t stop the hospital staff from whisking her off for numerous tests. Like most families, we all had worries, my parents more focused on the financial, living, and educational side of things, while I distinctly remember crying out of pure fear of how people would treat her. None of us needed to have worried though, as we soon realised, watching, and helping her grow.

Pearl was quite a funny baby, barely moving at all. One of her older sisters used to put a doll in her chair and it would take us a while to realise that the doll was not Pearl. Having Pearl in our family opened so many doors which we otherwise wouldn’t have opened. Take Makaton for example, which we all learned with Pearl and enjoyed so much.
The first song Pearl knew all the signs to was ‘wind the bobbin up’ and we will always remember that. Laughing at our dad struggling to remember signs, is a memory we all enjoy recounting, excluding our dad! John McNeil, a nursery centre in Salisbury was amazing. Pearl had so many opportunities there and it was them who kindled her love of horse riding and swimming. Unfortunately, John McNeil experienced cuts from the government and since then we have raised money
for them in dedicated charity events in the hope that many more children and families will benefit from the same experience we did.

Now, Pearl goes to the local Junior school and is in year 4, making lots of progress in reading, writing, communicating, numbers, and she has lovely Learning Support Assistants helping her. Her favourite part of school is most likely the food, she tells us excitedly everyday what she had for school dinner. Apart from food, another thing Pearl loves is music, dancing and in particular, singing, you can’t go five minutes without hearing her blast out her favourite song raucously and enthusiastically.

Pearl is very caring, out of all of us she has cared for her toys the most lovingly, she takes them everywhere and if there is something she can’t do without them she explains to them at length where she’s going and kisses them goodbye before propping them up on the sofa. She loves to make sure people feel loved, constantly reminding everyone that she loves
them and giving everyone a flower every single time we go on a walk. Pearl is hilarious, cheeky, loving, beautiful, strong, clever, independent and we love her so much and are so excited and proud to see where her life takes her.

No one is defined by their disability and a disability is not a lack of ability – a disability enables you in completely different ways, equally valuable. you do not need to place DIS in ability. As Teri Gar said: ‘ the true disability is people who can’t find joy and are bitter.’ I would like to add that it is also not being able to see the endless possibilities of what differently able children like Pearl are actually able to achieve.


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