The 21th of march
Then it's that time again! It's "Down's syndrome day" and we who are gifted with a small extra chromosome holder in our family are going a little "bananas" right now by marking similarities and differences in us humans in different ways, partly by being visible with different socks on the right and left foot and partly through sunshine stories, and we do it with great pride.
I think this is very important with these days for cohesion, but at the same time a little sad that it should be needed, like all other types of days where you focus on minorities and things that are considered different. Of course, I don't mean days for cinnamon buns and chocolate cake . There is something here that’s bothering me. I follow an American podcast called "the lucky few" which deals specifically with life with and around people with Down's syndrome and they have had a series that deals with the topic "What if my baby with Down's syndrome can't". Among other things, they have talked about expectations and hopes that you have as a close relative and the comparison that arises when we see other people with Down's syndrome who appear to be "more developed". Here it is about everything from being able to walk, being able to talk or having additional diagnoses that limit etc.
I have pursued this thought in silence and sometimes felt a guilty conscience, shame and sadness that Doris might appear to be "successful" in this type of context and this because we choose to focus on things that she is really good at and finds fun . This is how it is, she is as "successful" as any other child.
What do I mean then? Well, the expectations we as parents have of our children are not really specific to children with Down's syndrome. I think that we parents, more or less consciously, compare our children with other children and ask ourselves questions like: When will my child be able to walk, will the child have a language, will he be able to learn to read? It grinds and grinds. When you have a child with functional variation, it is so obvious that the journey will be a bit special, and this for better or for worse, and then the crazy thoughts that are so far out there and spin like, for example: - Help! My child will not be able to ski. We who love to ski, - Oh no! We can never sail with the family again. - I have never seen a person with Down's syndrome sail and therefore we will never be able to sail together. - Can they learn to swim? I can't imagine that.
It is not only one's own prejudices that pop up. Even the valiant attempts at comfort by those around them. The words "they are so happy and musical" often come in there. Our normal-disordered children also fall into the same "trap", but with a different schedule. What in the world of Down's syndrome can take several years, has a difference of a few months in the "normal" world.
Often, it is within the parent group one ends up in at the maternity care center that the comparisons become most tangible. As the children get older and time passes, we realize that all our children have their specialties. Not everyone is great at ball sports or math. Not everyone can understand or read poetry. Not everyone sings in tune, etc. We all have our limitations, but with that being said, we also have what we are really good at and have a talent for the most amazing things. There are many things that limit Doris, but what is it that says she would be interested in skiing and sailing? Even her brothers, who do not have Down's syndrome, have their limitations, but do they all? I definitely have mine. Nah, let's instead highlight the charm that everyone is different and that everyone has their own talents despite limitations.
