What the Down Syndrome community wish you knew.

A while ago I wrote a post similar to this about what you wish people knew about Down Syndrome.

As it was a long time ago, I thought I would ask the question to the Down Syndrome community again and see what the answers were this time and let everyone that people in the DS community wish you knew.

Down Syndrome is a complex thing, every person with DS is different and are affected in different ways. There are many stereotypes surrounding DS and the majority of them need to be debunked. There is no better way to tell everyone what we want them to know then to just write it down and share it with the world. So here we go!

  1. Our kids are not ALWAYS happy. They have other emotions too.
  2. I wish I’d known that Katherine would be all about her personality, sense of humour, character, ability, and totally herself. And that the DS bit is just a tiny fraction of who she is but it’s also what makes her HER.
  3. That Down Syndrome does not define him and that he is much much more than an extra chromosome.
  4. That it’s not all smiles and hugs, there are tears tantrums and drama just like every other child, the amount of times I hear, she’s always happy or “They are always happy “.
  5. See my child first not her disability and remember she’s part of me and she looks just like her sisters.
  6. Please don’t say I’m sorry…because we are blessed, please don’t pass comments like he/she doesn’t look that Downs Syndrome. Not every child is the same. Every person is unique in their own way with or without a disability so please don’t compare every single person who has Down Syndrome.
  7. I wish people actually knew what Down syndrome was…ie just an extra chromosome! It is nothing to fear in fact it should be embraced!
  8. That they’re not ‘so loving’ when teenage hormones hit – they can be little sh*ts just like any other teenager !
  9. They are not always happy. I hate this assumption. Harry can throw down as much as the rest of them.
  10. We were given lots of booklets etc but what we really needed was an introduction to a parent group. FOD or PADS would have been so helpful during the pregnancy. We advocate like a momma on Instagram Vikki.wren
  11. It would have been nice if someone had been more positive rather than advising us of the worst. They said you go throw a grieving process first you feel like you’ve lost your child the denial and then acceptance this is probably due to the way the news is given and the way the medical profession approach the situation. Also the lack of information out there.
  12. That being pre-verbal is not an indicator of lower cognitive ability, even in an older child.
  13. That there are 3 types of Down Syndrome.
  14. Hate it when people say I’m sorry or oh dear when they find out my son has DS. Really makes me angry .
  15. They can do things that other children can do.
  16. People with Down’s syndrome live in the present, Carpe Diem.
  17. I wish I’d known that my other children wouldn’t miss out on things, having a brother with DS. Instead it would shape them and bring us all closer together.
    I wish I’d known that those features I hated seeing when he was a new-born (I only saw glimpses) are the features I now love about him. That he would bring so much love and happiness into our home. That he would stop us having any prejudice towards any other group of people. That we would now see everyone as equal.
    Our blog is on Facebook Jaxon Rio Buckmaster life’s ups and Down’s
  18. That it’s not all doom and gloom, they are strong-willed, determined and unique. Plus make the most fantastic siblings!
  19. I wish someone had told me that people with DS can be perfectly healthy. Everyone was so quick to point out the possible medical issues and made them all sound inevitable. No one said ‘but it is also possible your child may not have any of these’.
    My blog can be found at 47 Stripy Socks


6 thoughts on “What the Down Syndrome community wish you knew.

  1. Oh I love how your always offer to share stories. I just don’t get some people and their bluntness with their questions. And absolutely Down syndrome doesn’t define who they are or who they want to be. Great idea for a post.


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