*Otherwise titled “The post in which I piss people off.”
From the time our troubles started, from the time we first realized there was just something ‘off’ about Riley. From the day We realized Angel’s torticollis was more than just a lazy neck and a heavy head. From the day we realized Angel’s cough was going for a month and showed no signs of letting up. From the first time Angel intentionally injured herself. From the first toys Riley lined up. Every day, every night, every in between we are aware. We notice when Angel runs out of steam before she’s played for ten minutes. We notice when Riley is starting to retreat into her shell. When we’re in danger of a meltdown of epic proportions. In danger of a night of a screaming, pouting, angry Riley.
We notice it all.
We see it in the every day.
We see it in the little things.
Every action, every reaction.
It’s a part of our lives. It is our every day.
Then you come along and say “But she looks just fine to me.” Or “She doesn’t seem autistic.” And of course the “She doesn’t act sick.”
I know you mean well. Really, I do.
But I hate it when you say that.
It’s like you’re belittling our every day.
The hours at doctors and specialists. The hours calming and refocusing an over-stimulated child (longest meltdown stands at 36 hours). The hours a day hooked up to machines to live every day. The way I lay awake at night listening to labored breathing. Check temperatures every time we feel a little warm.
I know you don’t mean it this way. I know you just mean to say that despite their troubles they look healthy and happy. That unlike other children with special needs it’s not a visible/noticeable difference.
But I hate it.
Just say they’re beautiful. Say they have a great smile. They look like they’re having a blast.
Don’t contradict what we KNOW. Riley does have autism (no matter how mild). Angel does have CF, and right now she is sick (and we spend every day wondering just how badly it’s holding on).
It is our every day.
We try to live life beyond our labels – and we only succeed by accepting them and integrating what they mean into our lives.
This post is FANTASTIC. I know a lot of people who need to hear exactly what you’re saying. No matter what our “normal” is, it always stings when people act like they know better. Sounds like you’re doing great with your three loves. Hang in there.
.-= Jen L.´s last blog ..OUCH with a side of EW =-.
Thank you, Jen. I struggled with expressing it the right way, and I’m glad I managed!!
Yes, it is almost like a “know-better” issue. Sometimes I think it’s blindly meant as a comfort like “Oh, don’t worry so much” – but when it’s your child you have to worry. Always.
To hell with them if it pisses them off this is the truth and it needed to be said. No one knows what you deal with except you and Archie. They shouldn’t assume they know better.
Love you and those beautiful kids. Cannot wait until I get to hug them again.
.-= Jess´s last blog ..I get by with a little help from my friends =-.
Yes, I understand. My parents have never seen a meltdown of epic proportions because they live far away and they’ve been lucky. But when we are watching my stepdaughter like a hawk at family gatherings to be able to step in and prevent one we are accused of being mean.
The new normal is raving about what a great weekend and realizing that if we had a “typical” kid she’d be grounded for life for the behavior we are now calling great.
*giggle* You always know how to make me smile, Jess 😀
You just need to get your ass to Indy and you can hug them all you want, chica.
Heather,
That’s exactly it. We’re told we’re being ‘too hard’ on them in some situations…and others we just get ‘the look’.
LOL. Yeah, a ‘normal’ kid would be soo in trouble for some of the behaviors…but you’ve learned to go with the flow!!
Thanks for visiting 🙂
Sarah
I don’t know why this should piss people off. It’s the truth! You guys struggle with things that other people don’t have to, and saying those things discounts your amazing dedication to kids that may be more challenging than ‘normal’. Great post!
.-= Rachael´s last blog ..A Better Blog Coming Right Up! =-.
Thanks, Rachael!