So what is Down syndrome?
Down syndrome is a genetic condition where there is an extra copy of a chromosome in a person’s genes. The most common is Trisomy 21 (also what Hudson has) where instead of 2 copies (one from mom and one from dad) of Chromosome 21, Hudson has an extra third copy.
What causes Down syndrome?
It is not known what causes Ds – but it is random and happens at conception. So parents with a new diagnosis – please read this carefully – THIS IS NOBODY’S FAULT!
And to be honest – this diagnosis shouldn’t be a blame game. You have been given one of life’s most precious blessings – a baby! And if that baby has a unique condition (e.g. not “typical”) – you’ve received the outstanding privilege to guide, protect and love this special baby! I’m 9 months into my journey writing this and I will tell you – it’s the greatest! Yes there are highs and lows and everyone has a different journey – but the Down syndrome community have been amazing, our family & friends have been fantastic, and I know it can only get bigger and better from here.
How common is Down syndrome?
It’s estimated that 1 in 700 babies that are born have Down syndrome. While what I’m about to type next is just my opinion, I think it’s worth sharing here that 1/700 statistic is just babies that are BORN – not those that are terminated prenatally. This breaks my heart into millions of pieces guys. My hope with this blog is to inspire the parents who have a prenatal diagnosis and trust that God created your baby just as he/she is supposed to be – in His image! Extra chromosome or not.
Will Hudson go to the same school as his typical* peers?
The honest answer is we don’t know. While Ds is not a spectrum condition, there is a wide range of differences with individuals with Down syndrome. Ds is black and white – you either have it or you don’t. You either have an extra copy of your chromosome or you don’t. What isn’t black and white is the development of that child – but is any child’s development black and white? Absolutely not! Our goal with working with Hudson is to nurture him and guide him similar to his peers and give him extra help or assistance where needed. I want him to go to the same school as his peers – but I’m not in denial about the fact that Hudson may need extra resources in the classroom or otherwise.
*please try to use the word ‘typical’ versus ‘normal’ when discussing children who do not have a special need.
What is people first language?
It is such a simple change in the way we communicate that has a SIGNIFICANT impact on a person. You put the person first, then the descriptor. For instance, Hudson is a baby with Down syndrome (not Hudson is a Down syndrome baby). Hudson is so much more than his diagnosis and he first and foremost is a baby, a real human being with thoughts, feelings, and a soul that deserves respect. This can go for anything! A patient with cancer (not cancer patient), child with Autism (not Autistic child), baby with Down syndrome (not a Down’s baby). Which is another question….
Why is it called Down syndrome?
As many folks in the Ds community say, THERE IS NOTHING DOWN ABOUT IT! We think of “down” as such a negative term – but that’s not why it’s called that. The doctor who is credited with discovering the syndrome is John Langdon Down…hence Down syndrome. While not as commonly known, it’s worth point out that it is Down syndrome, not Down’s syndrome. So you wouldn’t say “he/she has Down’s.”
It’s a genetic condition. It’s only part of a person’s identity and we are learning more and more about Down syndrome with continued research and funding! I’m optimistic that Hudson is going to do AMAZING things in this world – and he’s going to do them in his own Hudson way. I can’t wait to see!!
I’ll add more information as we go along, but if you want to read up, please follow this link to NDSS.org (National Down Syndrome Society).