In this blog and all of my writings about Down syndrome, I have referred to the condition as ‘Down syndrome’, but the more accurate term is Trisomy 21…3 copies (Tri-)…of chromosome (-somy)…21. In the online community a lot of parents … Continue reading
Sometimes Wade is given gifts. Mostly it is for a reason like birthdays and Christmas but occasionally we will receive a ‘Just Because’ gift. ‘Just Because’ gifts are generally lovely because I know that the person giving it to us … Continue reading
Wade wore these boots to kinder the other day. These boots are hand-me-downs from his cousin. Just like tops and pants and other things. They are pink.They are not embroidered with unicorns frolicking in meadows of daisies and fairies. They … Continue reading
*This story was originally published in Voice The Journal of Down Syndrome Australia, Issue 1 2016 and republished with permission. I am the author of the original article* Times are changing rapidly for people with Down syndrome as every year more … Continue reading
Stereotypes exist for a reason I guess. They come from a collection of commonly seen characteristics attributed to one type of person. Sometimes they are damaging and hurtful and sometimes they are harmless. I don’t particularly like them because they … Continue reading
March 21 is world Down syndrome day. A day when our community comes together to celebrate the lives and achievements of people with Down syndrome. A day to raise awareness and educate the rest of the world about what it looks like to live with Down syndrome today
It’s also my mums birthday… and Wade and I did nothing special.
We did something helpful and helped nanna open her presents.
We did something cheeky and cancelled all our plans so we could all spend a much needed family day together with my sister Sammy and her family in her amazing garden.
We did something chatty and played games and told stories in the back seat of the car on our way to Aunty Sammy’s house.
I did something different as I took a call from the Inclusion Support Manager of our local council to help us get information about the local kinders in the area that I am considering moving Wade to next year.
Sammy and I did something scary as we raced to the doctor with a child suffering a quick and immediate allergic reaction to an ant bite…it was Cohen by the way and he was fine after a dose of antihistamine!
Wade did something snuggly as he tucked into my jumper for more cuddles and a snooze after I woke him up from his nap; curled up like a baby making me think fondly of those days when he was small and tiny and new.
I did something frustrating as I tried to get anything that passes as food into Wade for lunch. Getting this kid to eat anything other than breakfast and dinner is impossible!!
I nearly stopped breathing out of joy as I watched Wade throw his toy away and sprint to the window when Uncle Bushy arrived home.
Uncle Bushy did something exciting and showed Wade how to gather up the chickens and put them away to bed.
Emily did something cute as she and Wade watered the little plants on the balcony with squeezy water bottles.
Wade did something disgusting and inhaled an enormous bowl of spaghetti at the fancy restaurant we had dinner at. There was more spaghetti squashed into the seams of his trousers and smeared on his face than down his gullet and I’ve never seen a happier kid.
Wade and grandad did something sweet and fell asleep together holding hands in the back seat of the car on the way home.
…but we did nothing special.
Our lives are ordinary.
Some days are fun and joyous like today, sometimes they are busy and overwhelming.
Some days look a bit different.
But they are not special.
Happy World Down syndrome Day and I hope your day was as ordinary as ours.
This week, as I was scrolling through my newsfeed on Facebook I noticed a screen shot posted by a friend of mine in America. His name is John and he is dad to the very adorable Owen, who has the coolest flop of wavy hair and also happens to have Down syndrome. After I read this screen shot, I was taken over by a moment of lovely clarity and enormous pride. My mind was cast back to when I first met John online and the enormous impact he had on me when he got in touch.
I started this blog back in March 2013. Wade was 14 months old and I was just starting to find my way in this new world.
Having an unconfirmed prenatal diagnosis for Down syndrome meant 9 months of complete unknown. Life consisted of percentage chances of this or that and a long list of maybes that may or may not be relevant.
I remember being consumed by wanting to know what my future would look like. On the whole I was comfortable with the idea of raising a child with Down syndrome but it was a process to go through all the ifs, buts and maybes about what that would entail. Some days were easier than others and some days were harder but when I looked at the roller coaster of emotions I had been on during my pregnancy, I realised that I had come out the other side relatively unscathed and with a positive outlook for my future.
I was probably a bit naive to some of the challenges ahead of me but once I met Wade, I knew I had been through an experience that you could only understand once you had done it yourself.
Once I came out the other side, I wanted to pass that information along so that other people might find a story they could connect to as well. While I expected that family and friends would be curious and want to know a bit more about my story, I was really hoping to reach other parents who had received a prenatal diagnosis like me and were looking for a story they could relate to.
I want to tell you a funny story about what happens when two kids who are incredibly advanced for their age interact with a kid who is developmentally delayed. I want to tell you this story because,
A) it was absolutely hilarious.
B) it’s a story of what happens when competition, ego and status don’t influence relationships.
First a little bit of background.
My sister and I are an interesting pair. Basically we are the same person but we couldn’t be more different. What I mean is, at our core, we hold the same values, same ethics and same outlook on life but we have always been a bit opposite in how we ended up there.
Growing up we fought like cat and dog. Only 18 months apart in age I was never quite older enough to assert full dominance of my superior age all over her and we were fiercely competitive in every mundane aspect of our lives. Who got to sit in front seat of the car, who got to push the trolley, who did our parents love more….(yes, I actually asked them that once)
I was the one who found school work easy and didn’t have to try too hard to get good marks whereas Sammy found it more difficult. Yet, she was the one who had a million friends by lunchtime and I was still working out how to keep the two or three I’d had for years.
She was short, blonde haired, blue-eyed and adorable and I was tall, lanky, and well….I guess my neighbour summed it up when she said to us...”Sammy will always be pretty, but one day, you will be beautiful”.
(I spent many years wondering if that “one day” had arrived yet!)
We didn’t become friends until I moved out of home. As we moved into our separate lives as adults, married and became parents, we became incredibly close. Basically…we grew up…and now we understand who the other one is. I don’t talk to anyone like I talk to Sammy, both in a good way and a bad way! We still drive each other batshit crazy in the way we do things but deep down there is respect and an unbreakable bond.
She often gets the faltering voice on the end of the line saying “Have you got a minute to talk?” And I also answer the phone to hear “I just need to vent!” She is the one who tells me to get a grip when I’m losing rational thought and acting like a crazy person and I am the one who tells her that yes…on this particular occasion, I think you were wrong and you might need to suck it up.
Rightly or wrongly I have decided that I want Wade to try mainstream activities first before we try disability specific ones. This is not a judgement on other parents choices, different kids need different things, it’s just the Plan A I have for Wade and then I’m prepared to go to Plan B if needed. But it’s hard to reconcile the high expectations I hold for him with the question that constantly rears it’s head in the back of my mind.
Are you doing this for him or for you?
It’s a challenge I constantly put to myself to try and keep myself in check when I plan a path for Wade. While it would be wonderful for me to high-five myself into next week for “achieving” full inclusion into 100% mainstream activities, it wouldn’t mean anything if Wade was struggling through them, constantly missing the message or just flat out not enjoying himself.
With all of that in mind however, I think it’s really important to ask “why not?” before I ask “can he?” when I’m choosing an activity. And so it was when I thought about swimming classes. I had thought about one-on-one hydrotherapy then I just thought…stick him in a class and see what happens.
When we first started, I was really apprehensive about it. Group classes…other parents and kids all much more physically capable than him. I wasn’t worried about how he compared to others…I know he has developmental delay and I don’t need him to be better than all the rest but I do need him to have the space and time to hear the instructions, and complete the movement in a way that doesn’t hold up the whole class. At the same time I need to give him the idea of what we are trying to do without rushing him.
We started at one class which was a disaster, the classes were disorganised and slap dash. Down syndrome had nothing to with it…I just hated the classes, so I decided to try Paul Sadler Swim School. Best decision I ever made. I went down for a tour and a chat and launched into the obvious about how Wade has Down syndrome and asked how much space would there be for him to learn at his own pace and blah blah blah….
It dawned on me quickly that I was the only one worried about Down syndrome here. It just wasn’t a problem. He was 18 months old but we would try him in with the youngest class and just see how he went.
His teacher, Alex was an absolute dream. We went at our own pace and I took my time with each element of the class and made sure that he was at least watching while I gave him a visual sign for each instruction. I constantly repeated the word for the movement at the same time as I was showing him. I was that crazy mother saying “Kick kick kick” over and over. There was this constant stream of noise coming from me as we did “monkey monkey monkey” then “swim swim swim”, “use your hands Wade use your hands”, but I really didn’t care. It was more important that Wade understood what we were doing and why. Each new milestone was met with huge celebrations and lots of cheering (from me mainly!).
Some days were easier than others and some days he loved more than others yet slowly but surely he started getting better. Alex would just appear to keep him on track and show him how each movement should look. Bit by bit over the last 12 months Alex and his other teacher Jacinda have helped me push Wade a bit further to test his skills and see what he can do.
When we first started we were given a big poster of all the levels that he had to reach before he could graduate to the kinder class. It seemed like a lot. Some of them he ticked off quickly and early, while others I started to wonder if he would ever do them. Every time he learnt a new skill we went home with a sticker to mark the occasion on the poster. I looked at the giant space that read “You have graduated to Kinder class” and wondered if he would ever get there. I couldn’t imagine him treading water, jumping off the edge safely or swimming without my help.
He started getting more and more stickers and I realised that with constant reinforcement and a bit more willingness for me to let go, he was learning really well. I will admit to letting go a few happy tears the day I took my hands away from his body and realised that he was swimming….on his own…(with floaties and a belt)…and loving it!
I was listening to a story recently of a woman who became pregnant with her first child when she was just 16. My mouth sat open wide as she explained how hard she had to fight to keep her baby, being a “good Catholic girl” in the 1960s.
It was the norm back then. Young mothers pulled out of society and whisked ‘away’ somewhere to either have a termination or disappear for a while until the baby was born only to be forcibly removed and given up for adoption. These sorts of practices were commonplace and considered to be ‘for the best’. This woman had all sorts of so-called experts in her ear, from the local priest, the doctors, family and friends weighing in on what was best for her, the baby and ‘good taste’ apparently.
It’s not like that anymore. Society has realised over the past 50-60 years that it’s not the end of the world if a young mother has a baby, actually. We know that tearing children from their mothers and raising them in foster homes or boarding houses away from them is not the recipe for a well-rounded upbringing.
We know that so we don’t do it anymore.
In the story, the woman recalled how her son was called a “bastard” purely for being born to an unwed mother. She talked about how little support she had and how hard it was back then. This woman was a trail blazer, refusing to be told what was best for her and being a part of change that would bring us to the better place we live in now.
No one looks back at those times and considers it ‘Best Practice’. No one looks at the damage done to young mothers and their children as a result of forced separation and uses that to advise young mothers today.
We know it is better to support parents through challenges rather than demonising them for their choices. We know that when we stop telling children they are ‘worthless bastards’ who should never have been born, they grow up having more pride, confidence and control over their lives.
When a young girl becomes pregnant at 16 today…we don’t go looking to the 1960s for advice…
….so why are we still doing it with Down syndrome?
When parents are told prenatally their child has or may have Down syndrome, the information and advice given by many health professionals is wildly outdated and skewed heavily on the side of Doom and Gloom.