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Today in life…

5 Jul

Extended School Year (ESY) started up again. I’m so happy Maura qualifies for it because all I’ve heard since school has let out from her is “Class? I like class. Class?”

The girl wanted to go to class.

Today, she got to go.

However, she noticed the bus pulled up from a different direction. And she got all “Nope. Not my bus, keep moving, you’re coming from the wrong direction. My bus always heads south, not north.”

Or, at least, that’s how I interpreted her “No…bus…” and pointing north.

(I think it’s north. I’m not really sure. We’ll pretend it is north.)

I explained that she rides a different bus for summer. And she understood. I love it when we understand each other. I understood the question, she understood the answer. It shows that all our hard work pays off. I say “our hard work” because when you have a child with a communication disorder, as a parent, it’s easy to fall into the rut of silence. I can easily anticipate Maura’s needs most of the time. She gets really comfortable in that rut as well. Basically, we both get a little lazy. So lately, I’ve been working on prompting her to explain herself more, be more vocal, show me, more interpretive dance moves – anything but her stare of “Can you read my mind?” that she’ll do. I still don’t expect Shakespeare from her. I would be totally cool with scripting. I expect her to quote Doctor Who to me.

Anyhoo…

She had a great first day of ESY and came off the bus ready for lunch, because it was lunchtime, and learning makes my kids hungry. So does breathing and being awake. I made her a sandwich and got her some applesauce. She was happy. I went on the computer. She foraged for something more and came to me with one of those ice pops, a blue one, in need of cutting open.

“LOOK!” she said, showing it to me. “STAR!” she stated, pointing to the word “STAR” written on the ice pop packaging, as I bought the Star Wars themed ones.

“VERY GOOD!” I said. And yes, we communicated in all caps because my daughter pointed out a word to read to me. Because she’s learning to read. BECAUSE SHE COULD READ THAT WORD AND IT’S FRICKEN AWESOME AND EXCITING!

Really, we’re having a terrific day today. And that’s not just all the caffeine in me talking. Though that was nice too!

And now, a guest post from my sister, who’s not sorry

18 May

(While we parental units were in Ireland, my sister came out to hold down the fort and keep people alive…and she has some words to say to those who thought this was a bad idea…)

Sorry, I’m not sorry…..

But I just want to take a minute to apologize for not understanding that when I tell people why I’m going to my sister’s and watching my niece, the first thing response I always get every single time is “I’m so sorry” or “It must be so hard”.

Excuse me???

Sorry for what?  Sorry that I’m going to go see a part of my family?  Sorry that I get an opportunity to be a part of my nieces (and nephews) lives?   Sorry that I get to terrorize with them with stories of what would happen to their mother and myself if we didn’t clean our rooms?  Playfully threaten that it was three against four and we are bigger than them, so they better make sure they keep up with their chores now that the all the adults are teamed up?  Sorry they that when ask for McDonald’s, all I ask is for to be good that day at school? Sorry when after an evening bath and tucked into bed (ponies, penguins, and all) she surprised me with a kiss and a “gnight auntie”?

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Maura and her auntie

So sorry again, but to me this sounds like something every aunt (and uncle) should look forward too and not have people think that this is some sort of punishment life dealt us.  Maura may have specials needs…she may require special care and she most certainly requires a special kind of patience and understanding…but to me, all it means is she just need is a special kind of love

At the very beginning of this visit, Maura had a meltdown in public…  big time.  I knew it was looming because of how she acted at lunch. Slightly manic… kept mimicking antics of a Hollywood scripted panic attack one we left the house.  BUT it was her older brother’s birthday and he asked to have friends over… you know, the one teen who doesn’t raise fuss, scene, or commotion?  Oh..  you’ve heard of him, but not much else? That’s because he doesn’t raise a fuss, scene, or commotion. So what better gift could Maura do for her big brother on his 18th, was to let him be an 18 year old boy having a pizza party with his friends.  Alone….  No Penguins…. No Frozen… No stealing his day with blossoming tween Maura theatrics.

So burgers with the girls, couple fights over whose shoes which girl wanted to wear (while at Five Guys)  and it was off to Target to buy Sean some birthday gifts.   Right away Maura picked up a map book she wanted and since I got the warning that Maura loves Target when she gets to buy all the things, I thought we did pretty well that she was cooperating with a map book while we bought cards and candy for sean.  So it was at the check out that behind me I heard fussing…..  Well fussing turned into tears…. Tears turned to “mom’s”….. “Mom’s” turned into butt on the ground, hysterical crying, refusing to even stand or stop screaming.

As frustrating as this might sound, this didn’t bother me…everything was paid for… and eventually she would take a moment to breathe,  take a second and actually pay attention to me…. Or for the very least get tired of sitting on the ground and want to go home for more of her favorite penguin cartoon.  Here was a little girl, that doesn’t understand where her mom is, being told no to her normal routine at home and at her favorite store to buy all the things.  So you know what?  In my opinion, I totally get why she’s having this meltdown at this moment.  It’s just going to take us a little longer to get out of the store.

What was frustrating was occasionally looking up to catch looks of pity or even worse, annoyance, on other customers face over a sad and worried little girl just working through her emotions as they checked.  I’m sorry, but what am I supposed to do? Pick up her and drag all 5’2” of her hysterics out of the store? That wasn’t going to happen.  Not take her out on beautiful Saturday afternoon? Still not  going to happen.  Not try to make the most of the only time I’ll have with my nieces for an entire year?  I’m most certainly not going to lock her away at the house for their convenience while running errand, so they don’t have to have to be reminded sometimes life isn’t always easy.

What I will do is learn from that experience a little bit more about Maura.  What makes her tick, what might set her off.  This week she taught me that she needs special attention.  My full,undivided, and patient attention.  Everyday we are all too quick in to get annoyed when things aren’t done quick and easy.  With Maura, if you take the time and listen to her clues, the reward for achieving the most simple of tasks are more fulfilling than any mindless convenience money can by.  I’ve noticed Maura’s growing up, not fast,but she is growing up.  After a storm of emotions passes, she does know when she caused a scene and can sense when she did something wrong and apologizes. She apologetic and as remorseful as she can be.  So why should I approach my time with her as burden?  Why should I accept people’s apologies and sympathies for something they see as being hard.  It’s not me that’s having a hard week,  it’s the little girl that misses her mom that’s having the hardest week of us all.

tea party, yo

tea party, yo

 

Can you see why I have no problem leaving Maura with my sister? Excuse me while I am thankful for having awesome family members. – Phoebe  

 

The seasons that don’t change

6 May

As I stretched across the bed to catch the corner of the mattress with the fitted sheet, a thought slipped through my brain –

“I’m going to be doing this forever.”

I was changing the sheets on Maura’s bed.

With the older three kids, I’ve watched them grow more independent each year, more able, more adult. They do their own laundry, they can fix dinner for the family, they change the sheets on their own beds.

Meanwhile, I have to help Maura still with all those things, at an age where she should be branching out to be more independent. And it’s hitting me once again, how life with her will be a forever thing. It sounds sad, but I’m not sad about it. Oh, I’d much rather pay someone to put the sheets on her bed and mine – it’s not a task I enjoy at all. But it’s a task that needs to be done, and there’s no village pounding down my door to do the mundane life things, like change her sheets on a regular basis.

So I do it. Because that’s just what needs to be done.

We watch “The Penguins of Madagascar” for the umpteeth time. Because she’s yet to outgrow it. And again, that’s okay, because we still can enjoy it.

She has toys I bought her several years ago that are so well loved and still cherished and played with. Worn, grubby dolls that have moved into almost a Velveteen Rabbit status, they’ve been so loved. Who knows, maybe they come to life at night. They come to life in her imagination still.

So much has changed in our lives, but so much within Maura’s world stays the same. She still has the backpack we bought five years ago, the magenta sparkly one. The penguin collection that includes a one-flippered penguin, and the other one that’s missing part of his beak because Maura used to chew on said beak. The pink Barbie VW Beetle that she got in the charity shop on the way home from school her first weeks in Ireland five years ago.

The seasons of Maura are kind of like California weather. You can have storm or wildfire once in a while, but most of the time, it’s sunny and warm, and all is good.

Things don’t move fast in Maura’s world. Not time, or the seasons of life. That’s okay. Because what also doesn’t change is her great attitude and loving nature. Even with a dose of almost-teen attitude, she’s still so happy and loving. She’s learning to mature in other ways, she’s not stuck in one space. Yet, I also know she’s always going to need some help. And that’s okay. Because even though I hate putting sheets on the bed, and picking up her room after she’s gone through it like an F5 tornado, hearing her squeal and go “OH! My ROOM!” with delight is totally worth it all.

This penguin came to the Great Big Sea concert with us

Maura and a penguin – circa 2010

 

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