What does Down syndrome really mean?

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There are many myths about Down Syndrome within society, and it is these negative perceptions that have resulted in a termination rate of over 90% upon diagnosis. Did you know that a baby with Down Syndrome can be aborted right up until it reaches the birthing canal at 40 weeks? That’s because it is feared and Down Syndrome is deemed to be such a life burdening condition.

The reality, however, is a little different to what people have been led to believe over the years, and these days people with Down Syndrome are proving people wrong continuously and demonstrating their worth every single day. Social media has been an incredible tool for the Down Syndrome community and finally, the positives can be found right there alongside the negatives. 
October is Down Syndrome awareness month and to honour that, here is a list of truths about the condition.

What is Down syndrome?

Down Syndrome is a genetic condition where a child is born with an extra copy of the 21st chromosome.

This causes development delays, the associated facial characteristics and it can also result in various medical conditions such as heart conditions, thyroid issues, hypotonia, Hirschsprung disease, hearing loss and digestion problems.
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Although not every person will have these medical conditions, look the same or have the same level of learning disability.

What are people with Down syndrome really like?

One of the biggest misconceptions regarding Down Syndrome is that people who have it are all the same. They’re all happy constantly, they all love music, they are all stubborn and they are all really loving. Not true! Each person is different and they all have different personality traits. They all have their own likes and dislikes, their own talents and struggles, their own beliefs and their own ambitions. If you have met one person with Down syndrome, then you have met one person with Down syndrome.

And on the contrary to what people have been led to believe, people with Down Syndrome feel every range of emotion just like you or me. They feel joy, excitement, pride, jealousy, anger, disappointment, fear, hurt. Having a learning disability does not mean you don’t have the same feelings and face the same issues as anybody else and it’s important that people remember this for those with Down Syndrome to be seen as human beings.

What does life look like for those who have Down syndrome?

Just like any other person in the world, everybody who has Down syndrome is different.

There are different circumstances, different backgrounds and different developments, so it’s near on impossible to make a claim about what life is like. But what is clear, is that life is better today than it ever has been before. It wasn’t so long ago that they were thrown into institutions at birth and hidden away from society. However, today children with Down syndrome can be educated alongside their peers, they can be part of community activities, have friends, get married, have a job, have dreams and follow them.

It’s not perfect and society has a long way to go before those with Down syndrome are truly accepted and provided for, yet it has come so far, and the future is looking positive.

How does Down syndrome effect families?

When we are expecting a baby, we plan out their lives in our minds before they are even here. School, university, career, marriage, grandkids is the timeline that society has decided is acceptable and it’s what we all want for our children. And we all want that perfect child! So, hearing the news that your child is going to have Down syndrome can be heart breaking and terrifying. You not only fear for your baby, but you fear for the rest of the family.

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What will having a child with Down syndrome mean for them?
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As far as siblings are concerned, it is well documented that they grow up to become more accepting, kind and less judgemental adults. They grow up around differences and learn that they’re not so scary at all. It is so important for children to be around others who are different than themselves!

It’s also often believed that marriages suffer and break down, but the reality is the opposite. The divorce rate for couples who have a child with Down syndrome is much lower because the truth tends to be that these couples know how to really appreciate each other and see the beauty in their time together. They have realized which things are actually important, and which things really don’t matter at all.

It’s not easy and there will always be struggles along the way. Having a child with Down syndrome can be scary when there are medical problems, and it can be frustrating when you are fighting to get them the services that they need. It can be hard to have people view your family negatively, and have people watch your child like they are something abnormal and treat them as such. It can be hard to see your child not fit in and not be accepted. But out of 1000’s of families that have a child with Down syndrome within them, the majority will say that it is absolutely worth it and that their lives have been enriched by their child.

What can you do?

The Down syndrome community is working so hard to raise awareness, but there are so many things that you can do to help. 

  • Interact with people who have Down syndrome. It’s common for people to feel uncomfortable around those with learning disabilities, but there really is no need. Talk to people with Down syndrome, be understanding and have an open mind. You may well be surprised!
  • Be a person that supports those in the community who have children with additional needs. Invite those children to parties, invite those mothers for coffee and invite those families to socialise. It can be really isolating when you have a child who is different, and you can make the journey a little easier just by making them feel included. 
  • Show your children that differences are beautiful, teach them to play with all children no matter their disabilities and talk to them about what it all means. Be the proud parent that has the child who accepts everyone and doesn’t bat an eyelid at diversity.
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This world is in a bit of a mess right now and society is terrified by those that are different, but it’s not only the people who are different that benefit from more inclusive and understanding communities. It’s all of us. Make the effort to understand and make the effort to include others – that way as generations grow up and become leaders we may just see a better world for all.

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  1. Dawn

    This is perfect! Thank you Haley for writing such a beautiful and truthful edition! ??

  2. Victoria Munt

    I have met Katherine who you featured in this article and she is such a beautiful lady. I am so pleased for her and Sam and wish them every joy in their new life together. xxx

  3. Joanne Trevino

    Thank you for sharing your knowledge with the world and most of all thank you for sharing you family with us! You are truly the best!

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