Posted on 06/02/2015 11:34:29 PM PDT by kathsua
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 13 kilogram 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.
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 whinge 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 for 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 has 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.
Do you want to see some absolutely beautiful photos of Kat and Parker? (Post continues after gallery.) GALLERY
Read more at http://www.mamamia.com.au/parenting/the-10-things-i-hate-about-having-a-kid-with-down-syndrome/#t3drchAxUT3sjcAq.99
A beautiful story. The firstborn daughter of my cousin and his wife has Downs. I remember Donna (the wife) embracing the experience as an opportunity and a blessing.
She's going through her life, while overlooking the very meaning of it....
In high school, a thousand years ago, my favorite teacher had a disabled son in my grade. He once told me he had not really known what love was until he had his son.
This man was a retired army colonel and one of the best men I’ve ever known. He deeply affected my life as a teacher and an example of what men should be.
This article seems, “whinge” and I won’t begrudge the mother who wrote it, but, I admire my teachers, Boots Up approach much more.
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