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19 Dec

Herding Cats – An idiom denoting a futile attempt to control or organize a class of entities which are uncontrollable or chaotic

…like my life.

Just scroll down to see the latest post ↓

This is not a post about lunch boxes…

27 Sep

Maura has two lunch boxes in regular rotation, plus a spare one that’s an odd shape so not my favorite to use.

 
This morning, I could find neither good lunch box.
 
Now, we’re not ones to put things away – how silly would that be? And I remember seeing the one lunch box on the table, which means the other should have been in her backpack. But table lunch box was no longer there, and backpack lunchbox was invisible.
 
“Maura, where’s your lunch box?”
 
*radio silence*
 
Now, I’m used to her not responding to me. It’s sort of our thing. I ask a question, and then receive no response. Because communication is sketchy, and often given in interpretive dance (and not just by Maura – her sister *is* a theater teen.) 
I would love it if I asked Maura a question and got a response other than “yes” or “no”, which, frankly, she doesn’t often use correctly. For instance, you can say “How was school?” and she says “yes.” – we assume that means school was okay. Other times, you can say “Do you want ice cream?” and she’ll say “no.” even though she means yes. Just the other night, we were at a restaurant, and I asked if she wanted a particular food, one she likes, one she gets every time we’re there – she said “No.” She was intent on ordering a Sprite. She wanted the Sprite. She wasn’t understanding that she could get the Sprite and the food.
So no, questioning Maura isn’t always helpful.
Yet I continue to.
Why? Well, because even if she doesn’t speak, she can often find a way to answer me. And because I have faith that if we keep doing this, we may make progress.
So this morning, as I asked her again “Where is your lunch box?”, Maura suddenly responded.
“I don’t know!”
It came out a bit whiny and frustrated and teenagery.
I greeted it with joy.
“You don’t know where it is? That’s okay! Let’s look for it!”
So we never found either preferred lunchbox. And Maura’s idea of helping me look was to follow me around the house watching me look. But I finally admitted defeat and grabbed the spare lunch box. At that point, it didn’t matter. Any frustration over losing the lunch boxes was wiped out by Maura conversing with me.

Six hours after writing this post, I found both lunch boxes – one on the couch, one on the floor in the dining area. I’ve decided we have mischievous spirits who move stuff on me in the house. I think that’s a reasonable explanation. 

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I think I’ve reached my capacity on kids movies

25 Sep

For some reason, Maura HAD to have a copy of “The Lion King” – a movie that, until now, I’ve never actually watched.

I mean, I’m sure my kids have watched it, I know my boys watched the spin-off show “Timon and Pumba”, Miriam’s choir did the full “Circle of Life” song last year – but somehow, I missed actually viewing the whole movie.

Thanks to Maura’s need to watch movies 3928 times in a row, I have now watched “The Lion King” – or as I’ve dubbed it, “Simba Doing Stupid Things”.

Really Simba, your father is James Earl Jones, you shouldn’t be this dumb. And really? You’re gonna follow Uncle Scar around? And watch him kill your father and slap your mother around, only to trust him enough to walk away? His name is Scar! He has a British accent! Come on already!

Again – I shouldn’t be left alone with kids movies. Especially ones where one of the main songs is “I Just Can’t Wait to be King” – a happy song about eagerly awaiting your father’s death so you can snatch up all the power. How very Shakespearean.

And then I discovered that Matthew Broderick was the voice of grown Simba.

Matthew Broderick.

Matthew.

Broderick.

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My friends were all “How did you not know this?” and I was all “I DON’T KNOW!”

Seriously, I don’t know how I got through the past 23 years of this movie’s existence not knowing Matthew Broderick played Adultish Simba.

Proving that no matter what your age, there’s always something new to learn.

Like “Hakuna Matata” – sure, it means “no worries” but it also seemed to be interpreted as “Yeah, so your father just died and you ran away because once again, you listened to Uncle Scar and you’ve not thought once that your mother might think you’re dead??? You made your mother worry this whole time!”

Seriously, Disney, what’s with you having characters run off? Snow White…Ariel…Simba…Elsa…okay, Rapunzel took off, but she was literally imprisoned so I support her choice. Disney is just a bad series of “People making poor choices”.

Again, maybe I just need to stop watching them all seventeen times a week. Oversaturation is a bad thing.

I just feel bad for “The Lion King” – it starts off so gloriously…the choir, the scenery, the uplifting song and tiny lion cub, James Earl Jones. “Before sunrise, he’s your son.” – what’s not to love?

Well, besides 30% of the movie being Scar going on about how he’s going to kill everyone.

Yeah, I definitely need less cartoons in my life.

 

 

Ruffled feathers

19 Sep

I blogged about a public meltdown that Maura had. Shared how I felt. I was honest, and maybe a bit too raw about it.

In return, many people asked “If I was one of those people in the proximity of Maura’s meltdown, well, exactly what should I do to help? How can I help?”

So I blogged again, after sitting on these questions of “How can I help?” by saying “Just ask. It’s really that simple.”

There were three reactions to this. 

The first type of reaction I got was that I was rude or snippy or flippant with my response. “We were just asking you what we could do, and instead, we got this post.”

I re-read my blog post, and don’t feel I was being rude. Maybe blunt? But not rude. I do apologize if I seemed rude, that was never the intent.

The second type of reaction I got was “Yes. This. Spot on. It’s just that simple. Thank you.” Oddly enough – that type of response came from other parents of children with disabilities.

Apparently, I said something that made sense to those of us who deal first-hand with the public meltdown, but seemed rude to those who witness the meltdown.

I am a bit confused by this response. Because usually, I am better at bridging that gap – at least, so I’ve been told. But maybe I wasn’t. Maybe I really sucked at it this time.

Maybe this is just something that only those of us living this lifestyle get, and that it is hard for outsiders to understand.

Except there was a third response.

Just this one. From my friend – who does not have a child with a disability, or is disabled, or works with the disabled. Just a friend. And maybe because of that friendship, she was able to see through the words I wrote to find the point I was making because she’s heard the tales I don’t tell here. Or maybe because I know this friend is the type who really listens to others, even when they aren’t being clear, who works hard to know what it’s like to walk in someone else’s shoes. But after I posted the blog, she wrote the following to me…

Thank you!! I was actually going to ask you to address this in a post, and I’m so glad you did even if I’m kicking myself for needing it spelled out. Because duh even if I were to ask the same person on different days (or at different times of day) the response would probably be different. You do an amazing job speaking to your experience, and I can’t begin to imagine the patience it requires. I appreciate it so much, I have learned so much from you. Thank you.

So maybe I did say something that made some sense to those who don’t deal with disability every day?

Who knows.

But where does all this leave me now?

To be honest…as much as I blog and seem to share our lives, I am the type who does not open up much. I have been working in therapy to realize that my feelings should be expressed and do matter, despite what the world has told me my whole life on so many levels. But to open up the comments and read that people think I’ve reacted rudely or badly when I’m just expressing how I feel…honestly, it makes me want to close the laptop, and walk away, and never return.

This is why I tend to shy away from offering advice, from telling people what to do. Because, funny enough, I don’t feel qualified. And obviously, from reactions to my post, many people believe I’m unqualified as well.

And there is a voice in my head going “This is why you don’t ask for help. This is why you keep things to yourself. This is why you don’t reach out.”  – because I go about it the wrong way…or at least the voice in my head dubbed “Mean Phoebe” by my therapist tells me all the time.

And the honest truth is, I don’t really expect anyone to step in and offer help.

I don’t look for help. I have spent a lifetime figuring things out on my own because that’s just how I was programmed. Asking for help is interrupting someone else’s more important life.

So in retrospect, no, I am not qualified to tell you how you could help out people having public meltdowns, because I would never ask for help from strangers in a store during one. I would never expect a stranger to go out of their way for the likes of me. Which is why the few times they have, I am blown away by their kindness.

Maybe that’s what I should have said in response to the questions I got. Then no feathers would have been ruffled at least.

These are just my feelings. My thoughts. My points of view in this world, or at least, the reactions to one blog post. This is still our story I’m telling, and maybe I won’t always do a good job at it. Maybe some of you will stop reading it. That’s okay.

But I’m still allowed to tell it.

 

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Photo by Rod Sot on Unsplash

 

 

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