I’ve said it many times before, and I’m about to say it yet again. The hardest part of raising a child with Down syndrome is not the disability itself, but the attitude of society. The hardest part is not Down syndrome, it is other people.
There are just so many assumptions about what Down syndrome is, and so many assumptions about the impact it has on people’s lives, both of those who have it and the lives of their families. There seem to be so many people in the world who have so many opinions on it without having any experience of t21 at all! Society is full of outdated images, facts and beliefs about Down syndrome and it’s this that scares people. It makes people uncomfortable and as a result it is seen as a tragedy. It is seen as something that needs to be eradicated from the world.
Society just doesn’t see that times have changed for people with Down syndrome and their families. There are so many more opportunities to have a fulfilling life, more resources available than ever before and every day we are seeing more and more inspirational and positive stories. It is very clear that today is a good day to be born with Down syndrome and the years of being institutionalized and hidden away from the world are behind us.
So why is it that others can’t see this? Why can’t people just get it? Well, it’s because the world is still frightened by it. People are terrified of Down syndrome. And it’s all because of a fear of differences, and those outdated and untrue myths we can’t seem to let go of. Our children prove people wrong every single day but it’s never enough, still society wants to believe the worst.
So here is my list of Down syndrome related myths and you just watch me squash them. Be honest, how many did you think were true?
Down syndrome is an illness
Down Syndrome is not an illness, it is not a disease and it cannot be cured or caught. It is a genetic condition caused by the result of an extra chromosome (chromosome 21). People with Down syndrome are not sick and people with Down syndrome are not ‘suffering’.
People with Down syndrome live short lives
Now this may have been true in the past, when our babies were put into institutions and not cared for well. When our babies were stripped of their human rights and not nurtured, loved and guided. But not now, now people with Down syndrome have the average life expectancy of 60 years, with many living well into their 60’s and 70’s. Today’s medical world and the knowledge we have about Ds means that fulfilling, healthy and long lives can be lived.
It’s tough on the families
Now this is one that I find tough to take, as it’s usually decided by people who have no experience with Down syndrome at all. They imagine that life must be hard for the families, so therefore decide it must be true. Well it’s not true, not in all cases anyway. Like in any other families there are challenges, and like in all other families people handle things in different ways. But studies actually show that divorce rate is lower in marriages where they have a child with Down syndrome than in marriages that have typical children. And also, a huge percentage of siblings wouldn’t change their sibling and are happy with their lives. In fact they believe there sibling has had a positive influence on them and their families.
Take our family for instance, we are extremely happy and and challenges in the future will be faced together as a unit. I know of many other families like ours and in many cases Down syndrome brings people closer together.
Yes life can be hard and yes families break apart, but maybe they would have broken apart anyway. Tough situations make or break a relationship, whether that be Down syndrome or anything else.
People with Down syndrome are always happy
Come to my house for the day and then tell me if you feel the same way!
Yes River a happy and content little boy, so is his older brother. Does being happy really have to be a ‘down syndrome thing’?. I like to think that’s just who he is and not because of his diagnosis, actually I know that’s just who he is. He is a happy little boy who also throws one hell of a tantrum, feels angry, feels sad, gets grumpy and in his life will feel every emotion that any other human being feels.
People with Down syndrome feel every type of emotion. All of them. Happiness, pride, fear, anger, joy, jealousy, surprise, pain, loss, etc. THEY ARE NOT ALWAYS HAPPY!
They can’t learn
Of course they can! Everybody born with Down syndrome will have some degree of learning disability, but it varies widely. It’s likely that they will take longer to learn physical skills such as sitting, standing, walking, talking, etc, but these milestones will be reached in their own time.
People with Down syndrome can learn and will continue to do so fort he rest of their lives. Like all people, their abilities will vary and the areas in which they will flourish will vary, but isn’t that true of all of us? It is harmful for them for us not to believe in their potential and their abilities to learn whatever they can and choose to. Belief in someone goes a long way towards them reaching their full potential and I will always believe in River no matter what he sets his mind to.
Parents, therapists and teachers all need to find ways to help people with Down syndrome learn, as they may learn in a different way, but they still deserve the opportunity to enjoy learning and everything it has to offer. And not only do people with Down syndrome learn in different ways, those individuals themselves all also learn differently to each other. There is no set of rules! By understanding development and learning style differences we can create a much better future for people with learning disabilities.
People with Down syndrome all look the same
Yes people with Down syndrome share some of the same characteristics, therefore giving them a somewhat similar appearance. Almond shaped eyes, short neck, flattened nose, low set ears, short stature, small ears, large tongue and sandal gap between toes are some of these characteristics, although not every person with Ds will have them all. River certainly doesn’t.
People with Down syndrome may look similar, but they do not look the same. I guess it’s human nature to find it difficult to differentiate from other types of people who look different from themselves. For example, I’ve heard many times that ‘chinese people’ all look the same. But of course they don’t, they just share some similar features, just like people with Ds.
So yes, people with Down syndrome will resemble each other, but they are much more likely to look like a family member. Like River looks like his Daddy!
People with Down syndrome all act the same
“they’re so stubborn”, “they’re so happy”, “they all love music” “they’re so loving”
I find this infuriating! Human beings are all unique, regardless of how many chromosomes they may have. People with Ds like different things, act in different ways and have as many likes and dislikes as anybody else. Down syndrome does not define a person and it certainly doesn’t determine what their personality will be.
Babies with Down syndrome are born to older women
The chance of having a baby born with Down syndrome does increase with age, especially after the ge of 35. However, the majority of women who have babies with ds are younger, due to the fact that more younger women have babies.
Special babies are given to special people
Nope, nope they are not. Even based on the fact that 92% of families choose to terminate pregnancies after a Down syndrome diagnosis this can’t be true.
I was not a special person who was given a special child. I was an imperfect woman doing her best in life, who was given the chance to have an amazing future with a beautiful little boy. I’m just a very normal person doing what they have to do for their children, just like my husband is and millions of other parents in the world. We all just do what we need to do.
I wasn’t special before I had River, but I do like to believe that he has made me a better person. I’m certainly more accepting, more patient, kinder and less judgemental than I ever was before. So no special people are not given special babies, our amazing babies make us special.
Down syndrome is rare
Down syndrome is the most commonly occuring chromosomal condition. there are 60,000 people living with Ds in the Uk, with 1 in every 1000 new babies being born with that extra chromosome.
Segregated specialist schools are the only option for education
Today, most children with Down syndrome are going to mainstream schools and thriving alongside their siblings and friends. They are learning from their piers, and in return their piers are learning a whole lot from them. Yes they will need extra help, but there are many resources available now to help children reach their full potential during their school life.
It is a very personal choice for parents of children with Down syndrome and only they know what is best for their child. Many choose mainstream and many choose specialist schools for children with additional needs. Every child has different needs and circumstances, regardless whether they have a learning disability or not, and it’s important that what path is chosen it is the right fit for the child. Whether a child attends mainstream or specialist schools should never determine their worth, but it should also never be assumed by society that children with Down syndrome can’t or shouldn’t go to mainstream schools.
They can and they do.
People with Down syndrome never grow up
I have heard quite a few times, men with Down syndrome being referred to as ‘Peter Pan’ and I find it so wrong. Men with Down syndrome are not boys, they are men and the same goes for females. They are not girls, they are women. It is so patronizing to treat them like children when they are adults, and infantilization of people with Down syndrome is so unfair.
Yes it’s likely that people with Ds will need some form of care throughout their lives, but that does not mean they won’t grow up, and it does not mean they shouldn’t be classed as an adult with adult rights. They will grow up, have life experiences, fall in love, face heartache, get married, be independent and yes, even have sexual relationships. And that’s ok!
River will not always be a boy, he will one day be a great man and we will treat him like one.
People with Down syndrome can’t find employment
There’s a general ‘ignorance’ in society towards people with learning disabilities, and it is widely assumed that they have nothing to offer in the workplace. This is not true at all, and it can be incredibly hard for people with Down syndrome who really do want to work. It can be a huge boost to someones self esteem when they feel valued and that they’re have something to offer in a job, and it’s so important that people with Down syndrome get to feel that. They deserve to feel that.
Even though currently less than 20% of working age people with Ds are in any kind of employment, be it paid or voluntary, although changes are being made. The Down syndrome association launched its WorkFit initiative in 2012 and is making amazing changes to peoples lives. Many big organisations are part of it and are starting to realize that people with Down syndrome are very capable and want to work and learn. People just need to have belief, understanding and the want for change.
I am so determined that no matter what River’s abilities are as an adult, we will do whatever it takes to find him something to call work. He will have a job!
Babies with Down syndrome can’t breastfeed
This is also a very common misconception, with many medical professionals themselves not having enough knowledge in this area. It can be more difficult and in a lot of cases not possible, but in many other cases breastfeeding can be established and maintained. I have now been successfully breastfeeding River for 2.5 years and although initially it was really tough, we did it and it has been incredible for him.
Life with Downs syndrome is not worth living
How can this be possible when there are so many people with Down syndrome living amazing lives? How can this be possible when so many people with Down syndrome say this isn’t true?
Who is it that gets to decide that a person with Down syndromes life is not worth living? Is it someone who has no experience with the condition at all? Is it the doctors, the government or society? Is it the families of somebody who has Down syndrome? Do they get to decide whether or not their child, sibling or grandchild’s life is worthy?
Or is it people with Down syndrome themselves? The overwhelming majority of people with Down syndrome are happy with their lives, and I as a parent of a little boy with the condition choose to believe them. I choose to believe that as an adult my son can be happy with his life to.
My only hope is that society starts to believe it to.