As October is Downs Syndrome Awareness month (and I’m all for raising a little awareness) I plan to share 10 top facts with you all.
Since there are quite a lot of out dated / old fashioned and incorrect information about Downs Syndrome, I hope by doing this I can help renew people’s understanding. In doing so I aim to create a better informed, brighter future for my son and all his chums, who just so happen to have Downs Syndrome too.
Fact 1- What exactly is Downs Syndrome??
“In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. ” (National Downs Syndrome Society)
If you were to line up all of the chromosomes for a class photo it would look a little something like this….
See that extra little blob on pair 21?? That’s what we call Trisomy 21 (Downs Syndrome).
It’s amazing isn’t it!?!
Fact 2- was it my fault??
Down syndrome is a randomly occurring genetic disorder and there’s currently no known environmental factor or behavioral activity of the parents known to cause it (according to the National Institute of Health.)
Translocation, a type of Down syndrome that accounts for 3 to 4% of all cases, is the only type of Down syndrome known to have a hereditary component.
Caleb and the other 96-97% of individuals with Downs Syndrome happened to gain that extra little chromosome completely at random!
Dispelling the myth that “some one is to blame”.
Everything happens for a reason xx
(Pic for cuteness)
Fact 3 – ‘how downs is he?’
Down syndrome is not a spectrum condition like autism. You either have it or you don’t. It’s not possible to have “a little” Downs Syndrome or “a mild case.”
Everyone with Downs Syndrome is unique. Some people may have more of the physical characteristics associated with Downs Syndrome, while others are affected more cognitively and others may have more health issues.
We are certainly ticking the “more health issues” box right now!!
That’s us home following our MRI.
Now to anxiously wait for the results.
Thank you to everyone for your kind messages and well wishes 😙😙😙😙😙😙
(Pic of before and after MRI)
Fact 4 – why is it called Downs Syndrome?
Why is it called Downs Syndrome? There is nothing down about it!
It is named after John Langdon Down, the British doctor who fully described the syndrome in 1866. Some aspects of the condition were described earlier by Jean-Étienne Dominique Esquirol in 1838 and Édouard Séguin in 1844.
In 1957, the genetic cause of Down syndrome, an extra copy of chromosome 21, was discovered.
That is where the “Down” comes from.
Such a shame his name wasn’t Dr. Awesome 😉
(Dr. Down pictured below)
Fact 5 – it doesn’t matter how old mum is
A lot of people believe that babies with Downs Syndrome are only born to ‘older’ mums.
Well I wouldn’t exactly consider myself old. I was 30yrs young when Caleb was born.
“The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.” (National Down Syndrome Society)
Fact 6 – we are all unique
It is important to remember that while children and adults with Down syndrome can experience developmental delays, they also have many talents and gifts and should be given the opportunity and encouragement to develop them.
Most children with Down syndrome have mild to moderate impairments but it is important to note that they are more like other children than they are different.
Fact 7 – the challenges
One of the most significant challenges for people with Down syndrome is low muscle tone. Low muscle tone affects speech, gross motor skills, and fine motor skills.
With the help and assistance from Speech and Language Therapy, Physiotherapy and Occupational Therapy as well as all the love and support from family and friends, people with Downs Syndrome can achieve their goals.
You might notice that I celebrate many of Calebs milestones. This is because I’m very much aware of how hard he’s had to work to achieve these milestones.
Fact 8 – growing big
Individuals with Downs Syndrome are smaller in stature. Boys average a height of 5 ft 2 in, while girls average 4ft 9 in.
What they lack in height, they make up for with an unmeasurable amount of awesomeness!!
That said Caleb is up the top of the Downs Syndrome growth chart. I guess he’s inherited his Daddy’s tall genes.
Fact 9 – complications
Ear, nose and throat issues are common in people with Down Syndrome. This is due to the narrow air passages and the more flat shaped nose, shorter palate, larger tongue and generally shorter narrower airway as well as enlarged tonsils. The ear canal is also much narrower. This can lead to an increase in infections and there is also a higher chance of hearing problems, this is one of the many things Caleb gets checked frequently at clinic.
Quite often Caleb can sound as though he’s battling a cold when he’s well.
Currently Caleb does have a bit of a runny nose. In other babies his age/size this wouldn’t cause major problems. But due to the narrower airways and flat facial features that little bit of snot can cause lots of trouble.
If you think you have a winter bug please consider the above and keep your germs to yourself (I mean this in the nicest possible way 😙)
(warning pic contains some bodily fluid – its only snot)
Fact 10 – more alike than different
A common misconception about Down syndrome is that everyone with it looks alike.
Whilst it’s true that there are some facial characteristics/traits associated with Down syndrome, an individual with that extra chromosome will look more like their own family than other people with Down syndrome.
From our 3D scan we knew Caleb would look just like Brody! Even though he has beautiful almond eyes and a flatter nose (DS characteristics) they are both very alike.
Ayla, not so much, but you can see the likeness in the pic of her when she was younger-wearing the hat.
I think Caleb look more like me, where as the other 2 look like there Dad. I think it’s the dark eyes and slightly darker hair.
What do you think??