Today, March 21st is World Down Syndrome Awareness Day. But what’s a typical day for you when you’re a five year old who just happens to have Down Syndrome. Well, it goes something like this:
Wake up then proceed to wake up the whole house. Insist on both parents getting out of bed and going downstairs to have breakfast with you, even if one of them only got into bed five hours previously. That’s his problem!
Sometimes agree to parents’ pleading request for you to sit on the potty/toilet. Laugh mostly at their pained expressions. This is so much fun watching them squirm!
Open freezer door and chance your arm by requesting potato waffles for breakfast. Acquiesce to standard breakfast grub of Chocolate Weetos and laugh heartily at any attempt by parent to introduce so called healthier options. Relent a small bit by asking for berries. Ask for milk and juice. Insist on pouring both into their correct receptacle. Eat cereal. Eat little sister’s cereal. Ignore her cries that she wasn’t finished. Spend next hour occasionally requesting TV in small voice, being referred to the whiteboard and lack of TV before school.
Leap off chair as parent asks you to go get dressed. Bound up stairs and into your bedroom and dive under the covers. Parent must spend next five minutes wondering aloud where you are and that he/she cannot find you. When parent announces they are leaving the bedroom, throw back covers and shout “Here I am!!” Laugh hysterically.
Kiss little sister goodbye.Walk to pre-school with parent. Insist on examining wall pavement, trees, everything to be seen in great detail. Insist on running race with parent but in opposite direction to school.
Arrive three minutes late for Montessori, even though school is literally just around the corner. Take off coat, pop onto rack, wave parent goodbye.Give big smiles to everyone. Spend next three hours painting, singing, running, jumping and laughing. Lots of laughing.
Line up with rest of kids from Montessori. Jump and down excitedly when parent comes into view.
1:00 p.m.- 6:00 p.m.
Lunch time. Once again request potato waffles. Kiss Papa goodbye as he goes off to work.Request afternoon entertainment. This may take the form of a trip to the playground where you will demand to be taken on the zipline, or a trip to the indoor play centre where you will find the highest slide to enjoy. Unlike your scaredy-cat mother, you love taking risks. Occasionally, there are painting and crafts request. Sometimes you’ll ask to visit a friend. Most of the time, however, TV of a very specific nature will be requested-either Shimmer and Shine, Dora Into the City (NOT DORA THE EXPLORER!!!),or the latest love, Princess Sophia.
Monday afternoons mean Galway Community Circus where much fun is had learning to be an acrobat and juggler. Sometimes you go places you know you’re not supposed to go. Much hilarity ensues on your part, much stress ensues on mine. The tutor is always helpful and encouraging in looking for solutions for you. I wonder do you realise how much of a trailblazer you are and that by taking part in these activities, you are changing the way the world sees Down syndrome and in turn, how to make it a more inclusive place. If not, don’t worry, your mama is taking LOTS of notes! Wednesday afternoons have an occasional hydrotherapy appointment where one parent will get in the pool with you to work on your muscle tone. Speech and language therapy, occupational therapy, orthotics clinic, they all fill up the daily schedule at various times of the year. Like everyone else, sometimes you’re in the mood for these appointments, sometimes not. You never fail to make your feelings known, whatever they may be.
The long preamble to dinner commences. Currently you are sampling the white menu. Rice, pasta, anything potato based. Tomato soup is also an option, though it must be shop bought. Home-made just will not do, Mother!! Occasionally, you grow brave enough to sample something from the plate of your more adventurous sister’s before realising what exactly you are doing and hastily returning to the safety of the white or beige.
Most nights you will request a bath, even if you are squeaky clean, which to be honest is rare! Then it’s time to brush teeth, (with some gentle persuasion), story time and bed. Oh, and lots and lots of hugs for the lucky parent whose turn it is to tuck you in.You’ve always been great to go to sleep easily, and most nights you’ll happily stay in your own bed until dawn.
And that’s it. A pretty standard 24 hours I think, with just some little tweaks from the norm. You may not know it, Mini, but you’re busting myths about Down syndrome every single day just by being you-adventurous, clever, crazy, loving little you. And now that you’ve turned the big 0-5, there’s no stopping you. The words that are coming out of your mouth continue to multiply and multiply, physically you’re as strong as an ox and your therapists all believe you’re more than ready for “big school” this September. The potty training is still a work in progress, but we’ll get there. You’ve smashed every other milestone so far and you’ve done it all with that amazing smile on your face. Put simply, 24 hours in a day with you just isn’t enough!
This year we’ll be rocking odd socks to help raise awareness for World Down Syndrome Awareness Day, held on 03/21 (U.S. date!) to signify a third copy of the 21st chromosome. The idea behind the odd socks is twofold-the stripey ones kind of look like chromosomes and it’s also a subtle way to celebrate differences. It would be fantastic if any of you lovely readers got a chance, could you post a “felfie” or foot selfie of yourself and/or your kids wearing odd socks on whatever social media engine you prefer. I’ll be sticking to FB,Twitter & Instagram cos I’m an auld wan! The hashtags to use are #wdsd16 and #dsi for Down Syndrome Ireland. Oh, and don’t forget to spread the word, thank you!x