*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
Many years ago I met a friend’s little girl for the first time. I’d say she was about 9-12 months old. Cute was an understatement but there was more than that. She was very present. I held her in my arms and felt an overwhelming sense of peace. She reached out and touched my face and explored its features. She was calm and contented. I said to myself — I want to order a baby just like this. She didn’t have Down syndrome, I didn’t know anyone with Down syndrome at that stage. I was years away from having a child but in that moment, I felt taken over by a feeling that I didn’t understand at the time but I am very familiar with now. I thought it was the cute baby that affected me…but I now know there was something else.
I read a lot of different views about disability and difference. Some of them I agree with some of them I don’t. Over the past few years I have certainly come to the realisation that our kids are just themselves, not angels sent from heaven or burdens on the world or anything in between. They just have extra genetic material causing some characteristics that many share and some medical conditions that affect some more than others.
Logically I know this. My reasonable, rational mind thinks about this and knows it to be true….
…but every now and then I am caught off guard by that something I can’t quite put my finger on. The advocate in me says it can’t be true. Our kids aren’t miraculous or unicorns personified. They aren’t sent here by a higher being to transform us mere mortals into exceptional versions of ourselves.
…and yet there is still that thing I can’t quite align with my rational mind.
There is something. It’s there fluttering away quietly in the deep recesses of my heart. It’s the feeling of breath leaving my lungs with joy. I have tried so hard to explain it over the years and I can’t. It’s a purity, a soundness, a deep rooted sense of connection I have with Wade. He sees me and gets me.
This is obvious though. I am his mother. I grew his tiny human form inside my human form and it’s obvious that we share some deep physical and emotional ties that linger long after the cord is cut…like any mother and child.
But…I see it with others too. Wade has a light that people don’t know they are looking at. Like a black light lamp that can only be seen at certain frequencies, people are drawn to him without really knowing why.
Early on I was sure it was only because he had a disability and everyone was just kind enough to be !!!SUPER NICE!!! to me because obviously I would need some extra ‘big ups’ to get through my day….(sarcasm font) but as time passes I know there is something more than that. They are seeing his light and are drawn inexplicably.
Over time I have learnt to accept it and not try to find an answer for it. He has something…something precious and different and captivating.
I know this because now I am caught breathless when I see the same ‘whatever it is’ in other children too. My heart literally swells when I see it in their eyes.
When I was pregnant I saw a photo of a young boy around 4 or 5 years old in a book of stories from other parents in the Down syndrome world. The book had photos of many children who were all beautiful and charming but when I looked at this particular photo, my chest tightened and tears began to run down my face.
I hadn’t met Wade yet. I didn’t know he would have the same blonde hair, the same eyes and the same look. That…something. The peace, the contentment, the feeling that life just is. The look that says ‘Hi. I’m here… that is all.’
Beyond that look is his smile. A whole body, whole spirit, shine of joy that melts you with one look. A cheeky grin that tells me that no matter how naughty he is trying to be, his nature just won’t let him step into the realm of actual bad behaviour. He might try it on but I know he has to work really hard to cause actual grief and harm to someone. It’s just not a part of him.
…and then there is Nicholas…
A few days after I started this blog, I received a comment from Annie Love over at Mummalove. My pregnancy story reminded her strongly of her mental journey through a Down syndrome diagnosis. I checked out her blog and there was Nicholas…with that look. Our boys are the same age, the same blonde hair although Nicholas’ is a number of shades more brilliant blonde. The same blue eyes…the same look. I knew just by looking at his photo that Annie would be experiencing the same stop-start motion I did every time I went shopping, with people smiling and saying hi. I knew that Nicholas would be drawing the world in with one flash of that infectious smile. I knew that people would be loving him and wanting to be near to him without really knowing why.
I knew how Annie would feel as she accompanied her boy out into the world; as though you carry a flame at the end of your hands and the moths draw in one by one and jostle to be near to the light.
I don’t know if it’s the extra chromosome or not but I know a bright shiny light when I see one and Nicholas has it.
When Nicholas fell ill a few weeks ago, I couldn’t really wrap my head around it…so he will just spend a few days in hospital and then he will be home…right?
As the days moved in to weeks I tried to imagine his light dimmed and smothered by a rampaging infection. I just couldn’t believe it. Yet those dark clouds marched on, wrapped themselves tightly around that light and took it from the world.
Waking on the Monday to hear of his passing took the floor from under me. I sobbed freely.
“Oo ok mummy?”, came Wade’s sweet voice from beside me and I sobbed again. I tried to explain why I was crying and he reached out and squeezed my hands.
Some people have a light that spills from them. It bridges the gap between souls and lights a path that not everyone gets to see. It’s not necessarily a Down syndrome thing but I see it a lot in our community. I see an uncluttered unfiltered light reflected on the faces of those who are lucky enough to really see it.
Nicholas your light was so bright, it made your beautiful family shine. It shone beyond your home and out into the world warming the faces of those who followed the measured and calm words of your mum Annie.
It was so bright it lingers after you have gone and stays with us in the hearts and memories of those who held you dear.
In a world like this, we need more lights like yours. Not less. It’s not fair that you are gone but I am grateful you were here. I have some idea of how your mum felt having you in her life but no idea what it must be like without you.
My heart breaks for you Annie but you made a beautiful light for the world who will always be a part of you and your family.
All my love
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.
I loved being pregnant. Well not the whole time, I mean the “being told your child may have Down syndrome” thing was pretty full on and there was the heat…oh god!…the heat in the final weeks was torture.
Oh yeah, and the swollen legs and the extreme coughing at the smell of washing powder and toothpaste….now that I think of it, the tiredness was pretty real. The bone-crushing, soul-sapping fatigue that comes from growing one human inside another human was tough…
….but other then THAT, I absolutely loved being pregnant. I loved feeling myself transform from not-a-mother to mother day by day.
I loved feeling my baby for the first time. At one of my regular check ups at the clinic I asked the nurse to check a weird lump I could feel in my abdomen and, when she told me it was the baby, it blew my mind. I loved that I could talk to my baby, play him the piano and sing to him knowing that he could feel me and hear me.
I loved feeling the first flutter of movement then feel the movements grow stronger and more insistent as he too grew stronger. I loved that he preferred to lie on one side and his heel would stick out just below my ribs and I could rub it every day. After he was born I would rub the same heel remembering that he was once inside of me and now he was outside and the ridiculous craziness of how that actually came about.
I loved that my body told me instinctively what to do and how I learned not to question what it was telling me. I loved that I learned to ignore so much of the over-the-top, unnecessary overkill that pregnant women come across when mindlessly surfing the Internet.
I loved that after all the stress and the worry and the uncertainty about what Down syndrome would mean for my unborn child, I laboured and birthed him exactly how my body told me to, exactly as I hoped it would be. I held in my arms a perfectly made, contently happy and healthy baby who needed no intervention, no medicalisation, nothing extra from me or the doctors. I loved feeling the surge of happy hormones flood my body when I looked into his eyes for the first time and we fell hopelessly in love with each other in that moment.
Yes, he had Down syndrome but he was healthy and perfect and loved.
As Wade is my only child, his is the only pregnancy I have known. I love talking about it and joining in when others share their pregnancy or birth stories. I love the kinship of motherhood that crosses the divide between women.
I love it when you are standing in a group at a party and someone announces they are pregnant for the first time. When the room erupts in kisses and hugs of celebration, I remember the giddy, deer-in-the-headlights feeling I had when I found out I was pregnant. As soon as the announcement is made the room will split like the Red Sea as the other dads in the room will burst forth to shake the new dad-to-be’s hand. They will shake their heads with jokes about how life is about to change in ways they never dreamed possible. Then the mothers in the room will surround the new mum-to-be and start asking all the requisite questions about the pregnancy so far. Stories start flowing about their own pregnancies and what to avoid and what to be on the look out for.
…and then there’s me.
knowing full well that my pregnancy and birth was amazing…
knowing full well that nothing I did prior to or after conceiving Wade caused him to have Down syndrome..
Knowing that I wouldn’t change a thing about Wade…
…and knowing full well that not everyone knows that.
Knowing that I am the one in the room silently reminding the new mother that sometimes not everything they plan for goes to plan. When everyone starts reassuring a worried new mum about the upcoming scans and tests saying that everything will be fine, I can feel the unspoken exception of me and my scans and tests….
When a newly pregnant mother worries about eating eggs or having the odd sip of wine and I announce “I ate eggs right through my pregnancy and Wade is fine”…I can feel them hesitate with no idea how to respond to that. Ok, I might...kind of…do it on purpose because my sense of humour is a bit warped but sometimes I just like to check how much people understand about why Wade is the way he is.
Down syndrome is a random thing that happens at conception. All the pregnancy advice in the world won’t change that. Yes, it is more likely to occur in older women but most babies with Down syndrome are born to women under the age of 35….because most babies are born to women under 35!
I know that eating eggs did not cause Wade to have Down syndrome. I know that Wade is healthy and smart and funny but I also know how weird it must look to a new mother when I start giving out pregnancy advice.
I am genuinely proud of Wade. I absolutely love showing him off because he is hands-down the coolest person I have ever met. Unfortunately I still find myself hesitating to share my joys sometimes because I know that people don’t see things the same way I do. Occasionally I will see a little boy with a familiar style of blonde hair or the same quiet calmness as Wade and I will feel the urge to tell his parents how alike our kids are. But I know the look I am going to get when I do that….As though I am saying, “your child looks/acts/behaves like he has Down syndrome”.
As though that is something bad…or an insult.
As though that is all there is to my son.
This is the pervasive nature of disability unfortunately. It would not be automatic for that parent to see that I am talking about my son’s qualities and features, his blonde hair, blue eyes or cheeky sense of humour instead of his diagnosis. It wouldn’t be automatic for them to presume that I am just as proud of my child as they are of theirs. That when they look at their kid’s perfect button nose or smile goofily as their child jumps up and down in a puddle or turns on the charm offensive in a cafe, I am thinking the same thing about Wade.
It’s a shame that the automatic reaction to disability is a negative one. Yes, my pregnancy didn’t go to “plan” and yes, receiving those test results were some of the hardest days I have endured, but they were hard because I used to live in a world without Down syndrome too. I knew nothing about it except what I was told to believe. I didn’t know how much has changed about Down syndrome. I didn’t know how capable he would be or how interesting it would be being his mum. I had no idea how much I would learn and change as a person.
It’s a weird feeling when pregnant women tell me how happy they are that their scans have come back with no issues. Don’t get me wrong, I am happy for them! Every new parent wants to hear that their baby is healthy, but it is impossible for me to hear anything other than how happy they are that their baby is not “like mine”. I have spent a long time thinking about what that means. It would be unrealistic of me to presume that parents-to-be would sit waiting for their test results with fingers crossed, hoping the baby has Down syndrome. I understand that when your little train of expectation jumps the tracks and ends up on a line you had no intention of travelling, it can come with a jolt and a shock. But when I look at my little guy now, then think about myself doubled over with grief and shock on the floor when I was told he would have Down syndrome, I can’t match the two up anymore.
I know it’s hard for people to understand that I’m not devastated about Wade having Down syndrome. I’m not feverishly making lemonade through gritted teeth because I was handed a giant basket of lemons. I am genuinely happy and wish I didn’t have to doubt myself when I talk about it with others.
For me, Down syndrome just is. 4 years down the track I have realised it is a thing that makes him different and a thing that has changed me and my world. But really, it’s just a thing. Sometimes a harder thing…sometimes not.
It’s a thing I will share about my pregnancy because it’s a huge part of my story. It’s a thing I will talk about when I remember him as a baby or I think about him entering school, or plan for his future. It’s a thing that will cause me to lay awake at night with worry sometimes and cause me to grin uncontrollably with pride and happiness on others….just as all parents worry or gush over their children at different times.
It’s a thing that tells me everything and nothing about Wade at the same time.
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.
Sometimes when you start out teaching your kids how to do things, you have no idea whether your approach will work or not. That worry can be amplified when your kid has developmental delay as the fruits of your labour can take a long time to ripen. Trying to balance sticking to a method to provide consistency and ditching something that doesn’t work before I have wasted too much time on it used to drive me crazy but as time passes, I am getting better at knowing what works for us and what doesn’t.
So, I thought I would write a little bit about things that have worked for us and why.
I thought I would start with road safety because this was one of the biggest fears I had early on. Like most parents starting this journey I’ve had so many people delight in giving me all the horror stories of uncontrollable kids or near death experiences as their kids belt out into oncoming traffic. This terrified me. What if I was never able to teach him to be safe near a road? What if he wrestled out of my grip suddenly one day and threw himself under a truck?
I decided early on that I would try to teach him some road sense in the hope that he would learn to walk with me safely and listen to my instructions…and I decided to start from the moment he could walk. Partly because the earlier I started the better, but also because he would be pretty slow and I could catch him easily if I had to!
So here is a list of things I did that have actually worked.
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!
(A big thanks to Nykie of Mistral Photography for these beautiful photos of Wade!)
Recently Wade’s communication has been really taking off, and with it has come a new sense of independence and knowledge about what he likes and doesn’t like. He is more opinionated and his sense of humour is really coming alive! Now that there is a bit of to and fro to our conversations, it’s like he has more ownership in a conversation which is beautiful to watch.
We had a wonderful exchange this morning after he turned on the telly with the remote. It came on to a kids channel showing “Play School”. Wade loves pushing buttons so even though he is watching the show he likes or listening to a song he loves, he will still push buttons to turn it off or change the channel. He played with the remote and the channel changed so he came over to me, handed me the remote, pointed to the telly and said, “School”.
“You want me to put Play School back on?”
This sounds like nothing but these kinds of exchanges are so remarkable when you think about it. A few months ago, he was just starting to speak, now he is not just copying what I say to him, he is using his words to initiate a conversation and get across how he feels about something. He has gone from the odd word here and there to hundreds of words, relentless attempts to copy full sentences, speaking in two and three word sentences and being so much clearer that people other than his nearest and dearest can actually understand what he is saying (or at least trying to say).
One “fun” aspect of his slowly developing language is the realisation that all those swear words I drop carelessly a into conversation have been softly landing in his memory bank. I discovered this through a recent bout of road rage as I heard coming from the back seat “Ah…SHT”. Now, this is a remarkable achievement for him and I should be celebrating because after three years of teaching him the word “Sheep”, we are no closer to him saying it. I have shown him flash cards, innumerable repeats of “Where is the Green Sheep”, soft toys, songs…all sheep related, all with me repeating the word “sheep” over and over but every time I say “What’s this?” I am told “Baaaaa”