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10 Things I Hate About Having a Kid with Down Syndrome

May 25, 2017

Let’s keep it real, shall we? I don’t like everything about parenting. I hated my daughter’s croup. Why do I need to like everything about Down syndrome?

10. I hate it when he uses his low muscle tone to his advantage in a tantrum

It’s not a fair fight. I hear parents say “All kids do it, it’s age-appropriate at 2 years old!” Yeah? Well, say that to me when I’m draping a 28-pound liquid toddler over my arm like a highly disagreeable fish playing dead. Then still powering on with my grocery shop.

9. I hate it when I’m picking him up from daycare, his friends are gathered around chatting to him, and he looks petrified

I know full well he’s not. His face is just telling me he’s in slight sensory overload. He’s still enjoying himself, while on the defensive. He is on first name basis with more kids than any other toddler I know (and he can’t even talk yet!) I know he loves the playground socializing. But the momma in me wishes I didn’t know what ‘sensory overload’ is, and how much therapy it took to get him to this point.

8. I hate it when people give him things and let him through because “he’s cute”

Yeah, I know he’s freaking cute. He’s also the devil’s spawn and a totally manipulative little soul with a smile that could charm paint off walls. But he’ll still be waiting in the FRICKEN QUEUE. Behind all the other people. Because that’s where he belongs- in his place. I like to tell them that, too. Then I get a sympathetic smile that makes me want a magic lamp. One that will make said person his birth mother, for 48 emotionally manipulative hours.

7. I hate it when I have to listen to the same freaking movie yet again because I’m too lazy to make PECS communication cards with a greater range of movies than The Lion King and Frozen

IT’S ON THE TO DO LIST. Let it go.

6. I hate it when he doesn’t eat his dinner, and I have to give him Sustagen for Kids

It makes me feel like I failed at parenting. Then I remember I created a beautiful, empathetic soul of a Big Sister almost exactly one decade ago. Who had even worse eating issues! She can even make her own 2-minute noodles. And then I high five myself.

A young boy with down syndrome playing with a blue wooden truck - 10 things I hate about having a kid with down syndrome

Parker (credit: Twig + Fawn Photography) 

5. I hate it when I forget to prep people to let them know my son has Down syndrome, and I have to coach them through their reaction.

I don’t always mind … but it’s draining. It’s like being delivered my diagnosis all over again, on a smaller scale. I can tell how much they know about Down syndrome by watching 30 seconds after they find out. So I just keep putting it out there to 8,000 people on his Facebook page every day, and kinda just hope the locals in my town have seen him before on their sister’s friend’s cousin’s newsfeed.

Is it too much to ask that EVERYONE knows EVERYTHING about ALL THE THINGS? Hey, it’s MY whinge list, remember. What I will never whine about are all those ‘second’ meetings. Where they tell me how Parker changed something about their perspective. And he hears, and just tilts his head and flashes a smile and all the paint melts off the wall in its direct path. Into a glorious puddle of rainbows and butterflies and kittens and unicorns.

4. I hate it when I have to leave Parker alone in bed asleep and shut the door.

After finding out at birth my beautiful (Smurf coloured) baby had Down syndrome, oxygen issues, and sleep apnea, it has been liberating yet terrifying not spending his sleeping hours staring at him like a first-time mother all over again. But a mother with a very real agenda, where I stimulate his back every couple of hours to get him breathing again. For 16 months straight. It’s been over a year since he came off oxygen, and I can still recall the hiss and smell of a new tank, and feel that little pang of hurt for him. Being delivered that metallic scent via a nasal cannula taped on with Cars Band-Aids, instead of sniffing his mumma’s perfume while he breastfeeds. It’s almost overwhelming when I remember back and look at him now, pink and chirpy and chatting away in Parkinese. Time cured those floppy airways just as the specialist promised. Just like his sweet newborn ears made of the same cartilage, his airways hardened up into a toddler-proof version.

3. I hate it when I’m at our playgroup, and our babies have similar issues.

I hate it because I know what that behaviour means, and if they’re a new mum I’ve introduced to the community, they might not know and I’ll have to mention it. ‘Does your baby always sleep with his head tilted like that? Have you ever heard of obstructive sleep apnea?’

2. I hate it when I worry about the future. Because Big Sister does too, and I don’t know what to say to her questions, sometimes.

At least Parker’s future, I can bet my bottom dollar on. Because I get to make that happen. Whatever he wants, I will move heaven and earth to get. Unfortunately in Big Sister’s case, I don’t get to hold a special document called Power of Attorney. So yeah, I worry about her future.

1. I hate it when I realise that two whole years have passed since my life changed, and I realize I wasn’t this person sooner.

I am 30 years old, and it took me so damn long to learn what ’empathy’ is. It is simply placing yourself in the shoes of another person, and understanding how they feel.

Every time a new friend learns my son has Down syndrome, I empathize when they are surprised, and unsure what to say. It’s ok that you don’t know what to say. I’ve been there, remember! My response to hearing the exact same thing about Parker was, ‘What’s his life span?’  Then I repeated it until the doctor stumbled and changed the subject. Then I yelled at him because my son was blue and he wasn’t answering my questions any more and nurses weren’t moving efficiently enough for my ENTJ personality. That will always be the Number One Worst Response When Discovering Parker Has Down Syndrome.

Every time someone lets my son in a supermarket queue, it’s because he looks heavy. Because he HAS low tone. And they know my life is probably a little harder than the average momma. And they want to help me in the only little way they can. I’m still not going to take the free queue jump when we’re both perfectly capable of waiting in line. (Unless he’s playing Disagreeable Fish: see 10.) But I empathize, and these days, I know that stranger just wants to create a small emotional connection.

Every time a new momma asks me, ‘Does your son do this too?’ I take a deep breath, make her a cup of tea, and pull out my mental encyclopedia of all things Down syndrome. Because I’ve been there.

Every time my daughter worries for her brother’s future, I empathize. She doesn’t understand yet that her momma’s totally got this. She doesn’t understand, because she used to see me worry too.

Before I knew better.

But I can’t waste time worrying, anymore. I’ve got a toddler to love, and lists to write.

Kat and her family (credit: Twig + Fawn Photography) 

Written by Kat Abianac, 2015.

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