If you’re following us on social media, you would’ve seen several facts about Down Syndrome throughout the month of October. I hope we helped raise awareness and to show that Down Syndrome really isn’t the worse thing in the world! We wouldn’t change a single thing about Saajan – not even his Down Syndrome as he wouldn’t be him without it!
1. Down Syndrome is NOT an illness or a disease, people with Down Syndrome are not suffering. It is a genetic condition caused by the presence of an extra 21st chromosome. Nothing done before or during pregnancy can cause Down Syndrome. It occurs in all races, social classes and throughout the world and it can happen to anyone.
2. There is no such thing as “mild” or “moderate” Down Syndrome. You either have it or you don’t. (I remember frantically searching this every five minutes when Saajan was first born!). Just like you and I, some may finding riding a bike really easy where others may find it a challenge and others may find maths difficult where others may find it a doddle! It’s taken a while for Saajan to be able to sit up independently (8 months) but he’s been able to hold his own bottle from about 5 months for a few minutes!
We all possess different strengths and weaknesses but sadly labels can often define those with learning difficulties.
3. The typical physical features associated with Down Syndrome are a short neck, a small head, small ears which may fold over at the top, small mouth, almond shaped eyes, a large gap between their first and second toe, a single crease across their palm and a sticky outie tongue (will cover this in another fact). A person with Down syndrome may have several or only a few of these physical features. Saajan has small ears (without the fold for now), a small mouth, low muscle tone, almond shaped eyes, a single crease across his palms and a sticky outie tongue. His eyes, low muscle tone and the single crease on his palms were what made the midwife suspect he had Down Syndrome.
4. The physical characteristics of a person with Down Syndrome does not determine the level of learning difficulty an individual may have. I often get told “Saajan doesn’t so obviously look like he has Down Syndrome, he’ll be fine”. He’ll definitely be fine (just like anyone with Down Syndrome!) but how he looks doesn’t have any direct correlation to his learning difficulty. The same way that someone with prominent physical features may have a mild learning difficulty!
5. If you know someone who has had a baby with Down Syndrome or is pregnant with a baby with Down Syndrome, congratulate them. Don’t be sorry! It isn’t a catastrophe – they’re regular people like you and I! Every life is worth celebrating.
Although it’s taken time to ride the journey of acceptance, right now, we have never been happier as a family – as each day passes we realise why Saajan was meant to be a part of our little family. We consider ourselves “the lucky few”!
6. People with Down Syndrome are more like their families than different. Saajan may have almond shaped eyes, cute ears and may stick his tongue out more often than not but so does his daddy! He looks just like Preetam when he was born and also looks like his baby brother.
Physical features aside, although still a little bub, Saajan definitely shares Preetam’s love for bikes even more so than Arjun! We always joke that we can imagine him tattooed up, with his spiked hair and a sleeveless vest on on a Harley! 😀
7. There are three types of Down Syndrome.
Trisomy 21 (Non-disjunction): this is where an error occurs in the typical division of cells where an embryo develops three copies of chromosome 21 rather than two. Prior to conception, a pair of 21st chromosomes in either the egg or sperm fail to separate causing an additional chromosome to be replicated through all cells in the body. Trisomy 21 accounts for 95% of all cases of Down Syndrome. Saajan has Trisomy 21.
Translocation: this is where part of chromosome 21 breaks down during cell division and attaches to another chromosome, usually 14. The total number of chromosomes are still 46 however the presence of an extra part of chromosome 21 leads to the characteristics of Down Syndrome. Translocation accounts for about 4% of cases of Down syndrome.
Mosaicism: this occurs when the non-disjunction of chromosome 21 takes place in one – but not all – cells during initial divisions after fertilisation. This leads to some cells containing the normal 46 while others contain 47 chromosomes. Cells with 47 chromosomes contain an extra copy of chromosome 21.
8. Siblings … I remember when Saajan was first born, I cried from the pit of my stomach with guilt about how devastating this would be for Arjun and how it would ruin his life. I cried as I grieved for our shattered dreams – for Arjun to have a best friend for life.
How silly was I!
Right now, Arjun sees no different. HE is the one that taught me to love Saajan unconditionally, to see him as Saajan and nothing else. He is the one that has taught me patience, he is Saajan’s biggest cheerleader who bursts with pride at the smallest achievement, the one that patiently helps his brother reach milestones and his protector. Saajan has an instant calming effect on Arjun when he’s feeling stressed or having a tantrum – he literally breaths for his little brother.
Research states that over 96% of siblings are proud of their brother or sister with Down Syndrome and over 88% feel that they are better people because of their sibling with Down Syndrome. Those are pretty overwhelming stats!
I really do believe that Arjun will be the best rounded individual by having Saajan as his brother. He’ll learn to be patient, compassionate and humble always. Likewise, Saajan is so lucky to have Arjun – he has so much love and time for his little brother and I have no doubt that Arjun will help him flourish!
I’m sure in the years to come it won’t all be a bed of roses when these two are fighting like typical siblings or when they’re plotting against me, but their relationship is the most precious one I’ve witnessed and it makes my heart burst with pride. I am so blessed to be their mama and they are so blessed to have each other! This is a picture from the other night where Arjun shifted seats at dinner to sit next to Saajan as he wanted to feed him
9. One of the greatest challenges for people with Down syndrome is low muscle tone/hyptonia. Low muscle tone affects speech, gross motor skills, and fine motor skills.
From four months, Saajan received early intervention to help support him in these areas. Currently we have physiotherapy and speech and language therapy.
For those of you in the UK, I’d highly recommend the charity, Sparkles, there is a very noticeable change after every session we’ve had!
Having low muscle tone makes the tasks we take for granted such as lifting food to our mouth, sitting up or controlling our muscles such as our tongue a lot harder for babies with Down Syndrome.
It just mean we get to enjoy every single stage for a little bit longer and we celebrate harder when Saajan does reach a milestone as we know how much effort and energy goes in to achieving each and every one!
10. Historically, children born with Down Syndrome were sent to mental institutions. oh how grateful I am that Saajan was born in this day and age where there is so much support available to help these individuals flourish!
Now adults with Down Syndrome contribute to society more than ever and in some cases absolutely thrash society’s misconceptions – saving lives – Valerio from Italy recently saved a girl from downing; starting their own businesses – such as John Cronin (John’s Crazy Socks), or Collette Divitto’s own cookie business after being denied a job; staring in their own tv show – Born This Way; participating in the special Olympics and thrashing them – Chelsea Werner; and there are even supermodels with Down Syndrome – Madeline Stuart!
Don’t limit … there should be no such thing “disabilities”, just different abilities!
11. People aren’t Downs, they HAVE Down Syndrome. Please be mindful of terminology as saying “Saajan IS Down Syndrome” is labelling him, limiting him and defining him. It’s a very small part of him. Saajan is Saajan who loves being tickled, loves baked beans, loves cuddles with his brother and really doesn’t like bath time! His favourite nursery rhyme is the wheels on the bus which was one of Arjun’s favourites too! … and he happens to have Down Syndrome.
12. People with Down Syndrome experience regular emotions like you and I – sadness, excitement, anger … It’s a myth that they’re always happy … it’s definitely true though that his smile is enough to melt your heart though!
Here’s a picture of Saajan having a full blown meltdown because I stopped him from eating sand!
13. No two people are the same. Just because you’ve met one person with Down Syndrome, doesn’t mean you’ve met them all! Just like chromosmally unenhanced () individuals have different tastes, personalities, looks and traits, the same goes for those with Down Syndrome! They’re all different!
14. Down Syndrome is the most common genetic condition. Two babies with Down syndrome are born every day in the UK. Around one in every 1,000 babies born will have Down Syndrome. It’s kind of like winning the lottery hence the term “the lucky few”! There are 60,000 people in the UK with the condition. I realised just how common it was when we went on holiday and saw five people with Down Syndrome in just a week!
15. One of my biggest fears when Saajan was born was that “my life was over” quite selfishly.
As time has gone on, thanks to social media and organisations such as The Down Syndrome Association and seeing others along the way, I’ve quickly learnt that actually adults with Down Syndrome don’t live with their parents forever. Many live independently and thrive!
16. It’s true that many children (approximately 50%) with Down Syndrome are born with heart defects.
The most common defect to affect children with Down Syndrome is a septal defect. This is a hole inside one of the walls that separate the four chambers of the heart, often referred to as a “hole in the heart”. Saajan’s was undetected at birth and it was lucky we caught it when we did. We are so grateful to our surgeon, his team and all the staff at The Royal Brompton for fixing our baby’s heart and taking such amazing care of him. It was a tough time but now feels like a distant memory and we hope it stays that way! We’ve shared our story on the blog.
We’re currently raising money for The Brompton Fountain to celebrate Saajan’s new lease o life – if you have any spare change to contribute to such a worthy cause, we’d be so grateful
17. Kids and adults with Down Syndrome are aware of how people perceive them … and they care. They have feelings just like you and I. They are human beings and understand just like you and I.
Saajan’s very in tune – he cries when he’s told off, smiles when he sees his favourite people, gets mad when we take long to give him his food and squeals when he’s excited – usually when playing with Arjun!
Just because he has Down Syndrome, doesn’t mean he’s not human!
18. The word “down” in “Down Syndrome” has a negative connotation and many assume (me included!) it is because it describes the condition. Those thoughts almost make you pity someone with Down Syndrome assuming they’re unhappy.
Actually it has nothing to do with the condition! “Down Syndrome” is not meant to describe those with the condition as being “down” instead, like many medical conditions, it is named after a physician who described the condition – Dr. John Langdon Down. There really is nothing down about it!
Oh how I wish John had a different surname to avoid the above confusion!
19. It’s true that the likelihood of having a child with Down Syndrome increases with the age of the mother, especially after 35. However, most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. I was 29 when I had Arjun and 31 when I had Saajan.20. Adults with Down syndrome are not children, and shouldn’t be treated like children. They enjoy activities and companionship with other adults, and have similar needs and feelings as their typical peers.
21. The word “r*tard” is highly offensive regardless of the context that it’s used in.
The definition of the word “r*tard” is someone who has a learning difficulty or delay. Sadly, the word is used so freely today as a way to try and insult people and is disrespectful to those who do actually have a form of delay or difficulty learning – a condition they have which is out of their control. Although many use the term flippantly and don’t mean any harm, in doing so they are demonstrating ignorance.
22. Most children with Down Syndrome do best in an inclusive learning environment, and it’s equally important for typical kids to learn about diversity, kindness, and friendship at an early age. Inclusive classrooms, where possible, benefit all kids. Encourage your children to be friends with everyone regardless of race, gender or ability and to celebrate differences! We weren’t born to be the same!
23. People with Down’s Syndrome are able to and want to work. Sometimes opportunities can be limited due to misconceptions due to a label and making an assumption about what people can and can’t do.
Research suggests that in the UK, 65% of those with Down Syndrome want to work and currently only 20% are in employment illuminating a need to bridge the gap.
The Down Syndrome Association, launched their WorkFit programme in 2012, designed to turn the ‘supported employment’ concept on its head. WorkFit is a tailored service dedicated to training employers about the Down’s Syndrome learning profile and about finding the right employment opportunities for the right people. There are currently 226 companies registered to the programme including Costa Coffee and Premier Inn! Tesco and Sainsburys are also among the larger employers that support those with Down Syndrome.
If you own a business, please don’t assume those with Down Syndrome are unable to work. It just takes them a tad longer to learn but they’re fully capable! It’s all about celebrating DIFFERENT ABILITIES.
24. Did you know that a baby with Down Syndrome can be aborted at up to 40 weeks? I had both my babies at 39 weeks. One week before the permitted time to be able to abort. 40 weeks – full term. A fully formed baby. A person. A human being. A life. A future. Just like you and I.
Why? Because they have an extra chromosome? Just because they have Down Syndrome?! Is Saajan not worthy of life?
There are so many other non life threatening mild to moderate disabilities that you’re unable to screen for. There seems to be such a negative stigma attached to Down Syndrome that has made it ok to be able to abort at such a final stage.
Why is it that if you don’t have a “perfect” baby, he or she doesn’t deserve to live? That it’s ok to eradicate their life at the last minute?! Hopefully my posts this month have highlighted what fulfilling lives people with Down Syndrome can live – how much they can achieve and how much they contribute to society.
I’m totally for pro choice and doing what’s right for you if you’ve been given accurate and realistic information before making that choice. In many people’s experience, the delivery of the news is somewhat guiding of what happens next. Medical professionals begin to give you their opinion on what your life may be like with a child with Down Syndrome – most of which have no first hand experience. Actually a more helpful approach would be to introduce parents in that position to families who have first hand experience to gain a truer and fairer picture before making such a huge decision.
Many parents (like we were) have an image of what Down Syndrome is. They’re told what “risk” they have of having a baby with Down Syndrome. The word “risk” automatically makes us assume there is a danger associated with the condition, there is something to fear. Having first hand experience, I can tell you there is nothing dangerous about Saajan.
To be honest, I’m glad we weren’t given a choice. The thought of knowing that there may have even been a smidge of a chance that Saajan may not be here makes me feel sick to the pit of my stomach. And having had several encounters with some medical professionals that were offering us their condolences post his birth, it’s heartbreaking knowing that those same conversations prenatally would steer many people down the path of termination.
25. As recently as the 80s, the average lifespan of someone with Down Syndrome was a mere 25 years. In 1900, life expectancy was even more shocking at 9 years old. Today, they have a life expectancy of 60 and many go on to live to their seventies. Previously the lower life span is predominantly due to the inhumane institutionalization of people with Down Syndrome. Today people with Down Syndrome are very much a part of society and there is great improvement in the health care provided for them.
26. “Did you not have the tests done” – this is possibly the most hurtful question and I get asked it often. Not the question itself, but usually the underlying belief that if we’d known before Saajan was born, we would have terminated as many parents do. I was asked this question just a few weeks after Saajan was born when I was in a really bad space mentally and the “friend” kindly proceeded to tell me that had their tests come back positive for Down Syndrome they would have terminated their pregnancy – confirming her belief that our baby that was lying right in front of her, isn’t worthy of life.
I do appreciate that many people ask out of curiosity and actually not all those that have a positive Down Syndrome antenatal diagnosis terminate. Perhaps it’s my personal experience that now dictates how I feel!
27. It’s a myth that babies with Down Syndrome can’t be breastfed due to low muscle tone and larger tongues. I managed to breast feed Saajan and he latched on even better than Arjun. My breast milk is what got him out of the incubator when he was in NICU.
28. Down Syndrome cannot be “cured” the same way you can’t permanently change someone’s hair colour. It is a part of an individual’s genetic make up. Although the chromosomal make up cannot be changed, science and doctors are continuously improving the management of health issues associated with Down Syndrome.
29. Some of the common health problems associated with Down Syndrome are heart defects, thyroid, hearing and vision problems. All of which are managed through regular screening. Virtually all health issues that occur in people with Down Syndrome also occur in the wider population.
30. Those with Down Syndrome are often visual learners just like I am! This has often been linked to partial hearing difficulties which can sometimes lead to a delay in speech due to physical, as opposed to mental, challenges.
31. Research has shown that 99% of people with Down Syndrome are happy with their life!
Help us to spread awareness about what Down Syndrome really is! x