We did nothing Special for World Down Syndrome Day

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.

  
Grandad and Wade did something hilarious and sang Happy birthday to nanna at 6.30am while she was still in bed.

We did something helpful and helped nanna open her presents.

  
Wade did something adorable and chased nanna around the garden in the morning in his Bee Boots.

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.

 
  
Wade did something fun as he jumped for joy with his cousins on the trampoline taking it in turns with Emily to roll around and play different games they invented all on their own. 

  

  

  

 
Cohen did something beautiful as he showed Wade how to plant a plant, make “chocolate and caramelised onion ice cream” out of mud in the cubby house and how to look for the eggs in the chook pen.

  
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 found true inclusion and now I don’t want anything less.

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.

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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!
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When the wheels fall off…in public…

I met a group of mums not too long ago who all have kids a bit older than Wade. As we were talking, a few mentioned how the feelings of grief that some have after diagnosis can reappear at different times, usually around transition times as our kids move from one stage of development to another, like starting school. On an intellectual level, I felt strange about this. In my mind, I have already dealt with the feelings I had around the time of diagnosis. I know that my fears were mostly misplaced and I am so truly in love with who Wade is. I don’t feel like I have lost anything by having Wade. But the more I thought about it, the more I realised this is exactly what has been happening to me over the past few months.

As Wade is getting older, the developmental gap between him and his peers is getting larger. My logical brain tells me that this is ok. I know he doesn’t need fixing or to be made “normal”. I know his value is the same as everyone else regardless of his achievements but as a parent, the universal feeling of not doing enough is a monkey on my back.

I want full inclusion for Wade. I see it as an important goal and one that is not only possible but worth fighting for. The problem is…as Wade is getting older and becoming more of his own person with his own strengths and weaknesses, I am starting to ask myself whether my desire for him to be included in any and every facet of life, is more about me than about him. Trying to balance the concept of “the more I put into Wade’s development the better off he will be” versus “the more I embrace and nurture him for who he is the better off he will be” has been driving me crazy. Continue reading