Dealing With Public Perceptions — 5 Minutes for Special Needs

Dealing With Public Perceptions



                               

When Zoe was little I spent a lot of time thinking  ( and writing) about about how different she was. Then she grew, and through her grade school years blossomed with the encouragement to try and do her best as I made sure she was always included, and treated just like everyone else.

Zoe will be starting sixth grade next year, and growing into who she is meant to be. She is quick to laugh and smile, full of pre-teen sass.

I have always maintained my own set of rules for Mothering Zoe. Many of them involve not making a big deal about her disabilities, within our family .. even in small ways. [click to continue]



                               

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How to Hold it Together When the World Falls Apart

Hi you guys!

This is basically my week again…only different surgery on the stomach…I’ll update you later…

 

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I get tired–the kind of tired that makes your bones ache.

Sometimes, I get grumpy too.

Hey, don’t we all?

In this ever-winding road of special needs parenting, I find myself often in a place of worry—of frustration.

Nothing seems to go right. Ever.

If there were 2 possibilities–say, vanilla or chocolate–Jack would somehow end up being banana. Even if there was no possible, plausible way for that to happen, it would.

So, you would think that I would be surprised when weirdness happens.

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Jack met with the developmental psychologist on Tuesday for a few hours. We have been noticing some hard-core aggression along with some other really disturbing “new habits” that have come up in the past few months (for example, he’s taken to not sleeping again, and he’s picked all the nails off his fingers and toes). It was time.

She is amazing.

The office is amazing.

They have an education advocate who comes in to introduce herself and she calls you to make sure you’re getting everything you should from the county (school wise). I nearly wept with joy.

After two hours of pouring our hearts out and her seeing Jack at his absolute worst, I felt like we were actually in the right place, with the right provider for Jack.

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What a Special Needs Mom wants for Mother’s Day

This week, I’ve read lots of blog posts and memes about Mother’s Day. Some of them are pretty dead on accurate, and others hurt my heart. Lots of them are about what mother’s really want for Mother’s Day—things like for children to close the doors, pick up socks, and so on.

So as I was sitting here pondering how superficial many of these things were, I started to think about what I would want for Mother’s Day.

(Now, everyone will know my secrets)

  1. Health care perks! While I’m lucky enough to have a fairly good rapport with our doctors and specialists, I’d really like to have a punch card.
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The Beauty in the Beast

We, lovingly, call Jack “The Beast” sometimes. We don’t mean it in a derogatory way at all. Just in a way that we all know is true— he’s kinda Beastly (he’s a growler…loves to growl all the time when we’re out. Growls at old ladies, at kids, at dogs…). Sometimes he’s “Beastly” or “My Beasty Boy”… you get the picture.

You see, I can see the Beauty in My Beast.

You see a kid that growls and is grumpy.  I see a kid who growls because he’s sick of people staring at him, and who hasn’t slept more than 4 hours a night in his life.

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As They Grow…

I am the first to admit that March 7, 2007, was one of the toughest days of my life. I sat, holding the baby that only a week prior was declared “mine” in a court of law, while a neurologist told me my son had a diagnosis that changed his life forever.

I felt numb. I felt like I couldn’t breathe. I felt alone.

I bought chocolate. I bought wine.

I had to tell my mom…my best friend…my daughter.

All those years ago, I was sure that getting over the grief and desperation, and finding the point where I felt that I was educated enough to be an advocate was a huge achievement.

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Weddings (and other such events)

Tomorrow my brother is getting married.

In a quiet, small gathering.

On a boat.

At Disney World.

 

Now, while most people think this sounds romantic and lovely, I am a nervous wreck. My brother loves my son no matter what; however, if he decides to melt down or scream or narrate the entire event, I fear he’ll never speak to me again!

So, to make myself feel better, I tried to think of all the ‘What If’ moments that could happen, so that when something minor happens, I won’t freak out. It doesn’t make any sense to anyone but me, but that is OK.

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My Three Cents

A pile of pennies

My Three Cents - or More You Should Know...via jpmatth at Flickr

Recently there have been a couple of posts by parents trying to help the general public understand a little what it is like to raise a child with special needs. I saw this one written by a mom, and she referenced her inspiration written by a dad. It was interesting for me to read these pieces. We’ve reached a point where the child’s needs are pretty easily met. She gets speech and social skills support at school. We do gymnastics instead of OT. There’s some other learning issue going on, but it’s not affecting her enough to get the school off the dime.

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Counting the Grapes

I was counting grapes out of habit the other day as I was packing the child’s lunch. I guess I’ve done it for so many years that I continue to do it now even though I don’t need to. As I was inwardly laughing at myself my mind flashed to a day several years ago when one of my best mom friends was chuckling about it, too.

This was pre-twins. I can’t quite recall how old the child was, but I think she was not quite three yet. So that would be after I knew something was amiss but before anyone else really thought much about it.

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On Our Tweens and (Not) Letting Them Flounder

“You must be so busy, with four kids!” People say when I introduce my family. And I look at them, thinking, “Well, no, not really.” (Minus the doctor and specialist appointments).

You see, until this year, there haven’t been extracurricular activities. It was enough to take two older girls to the park 3 days a week and not have them throw a rock at another child or eat wood chips. It’s not that we didn’t get out in the community, it’s just that I decided pretty much right away that it wasn’t going to work for our family. Mostly because I couldn’t handle the stress of my own expectations for the experience.

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