Positive about Down syndrome

Positive about Down syndrome provides information and support to new and expectant parents of a little one with Down syndrome.

We have amazing online support for our families, we know how important it is for them to have access to accurate contemporary information and so provide our book #NobodyToldMe the truth about Down syndrome to families and literature to maternity units.

We have recently introduced online early development groups for our preschoolers, baby Makaton signing courses for new parents and Makaton training for members’ nurseries/childminders.

We believe every parent should receive the best possible care and support.

We believe the arrival of every baby with Down syndrome should be celebrated.

We believe every child with Down syndrome should be given every opportunity to flourish and thrive.

  /  Into Childhood   /  Chloe

Chloe

I’m Jade, Chloe’s mum.  I was 19 when I found out I was pregnant, and I hadn’t given the possibility of Chloe having DS a 2nd thought.  It wasn’t until a private 3D scan when I was 30 weeks pregnant had picked up on Chloe’s AVSD (a hole in her heart) that I was given a 50/50 chance of Chloe being born with DS. In that moment, I felt like my world was falling apart. The daughter I thought I was having had gone, and was replaced with a baby that I thought wouldn’t be able to learn, wouldn’t be accepted, wouldn’t be able to do any of the things parents want their children to be able to do.  

 

My last few weeks of pregnancy were spent worrying over my laptop, googling ‘Down syndrome babies’, and asking questions on parent forums.  One night I had a reply from another mum who has a daughter with DS, and I will forever be thankful for her reply.  She introduced me to a private support group on facebook for parents in Scotland who have children with DS.  From then, I realised that I wasn’t alone with my fears, and that my feelings at the time were also perfectly natural.  

My fears were based on stereotypes, and outdated, inaccurate information. As my support network grew, so did my understanding of DS.  Being introduced to other parents in the same situation has been far, far more valuable and eye opening than ‘text book information’. 

My advice to parents who have a pre or ante natal diagnosis of Down syndrome, is to get in contact with your local DS support groups.  Don’t listen to ANY negative comments or advice, as well meaning as they may be.

The past 4 years have been a rollercoaster, and there have been moments that haven’t been easy, but isn’t that a definition of parenthood in general?

And every day has been so worth it.

It’s cliché, but I wouldn’t change Chloe, and I wouldn’t change the fact she has DS, as she just simply wouldn’t be the Chloe that I know and love.

I push Chloe to be the best she can possibly be, and I don’t let her diagnosis get in the way of that.  

She’s my little bundle of perfection. 

This is Chloe.
Chloe is 4 years old, she will be 5 in March.
She goes to nursery 5 afternoons a week, and starts school next year (eek!).
She attends weekly dance lessons (ballet & cheerleading), and will soon be starting gymnastics, and swimming lessons too.
She has very long dark blonde hair, down syndrome, blue eyes, gorgeous cubid bow lips, and she absolutely loves to pose in front of the camera.  She enjoys role play, and doesn’t miss a day where she will make me a pretend cup of tea in her toy kitchen.  She also loves to paint and draw.  She has recently learnt the alphabet, able to recognise all of the lower case letters in phonics, and numbers upto 30 (skills that aren’t usually mastered until the first year of school).  She’s also quite advanced with makaton, a form of sign language.  Quite often her old nursery teachers would ask Chloe if they didn’t know a certain sign.

Notice the words Down syndrome?

Notice how small they look in that paragraph, and how it is simply part of Chloe, and not a definition of who she is as a person?

Email jadelennon9@outlook.com and phone 07425 148014