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Tag Archives: intellectual disability

Life with Maura, episode #827

10 Nov

Maura is not the neatest of teens.

Somewhere, my sister is going “Well THAT’S an understatement.”

My sister has spent time with Maura obviously.

But it’s true. Maura and neatness do not go hand in hand. Maura has always been a messy kid, and now she’s a messy teen. We spend too much time wading into her room to shovel it out and tame it back into submission and a semblance of organization that will last two days tops. She can destroy a room in five minutes, leaving it strewn with My Little Ponies and costume bits.

Luckily, we are not Type A people. We don’t freak out at the wake of destruction she leaves. We just sigh and carry on.

Sometimes, I don’t discourage it.

Case in point – a package came to the house, and the contents were packed in lovely pink packing peanuts. Boxes like these are pure joy for Maura, and free sensory play. The box came over two weeks ago and amazingly, it wasn’t until yesterday that it kersploded everywhere.

 

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[image description – a lovely mutli-shades of blue area rug coated in pink packing peanuts, a box of pink peanuts sitting next to it]

I’m guessing it tipped over while Maura’s doll was swimming through the peanuts. Maura looked at the mess and pointed to it. I could hear the implied “Can you clean it up?” I pulled the age-old “You clean it up.” And she did. Mostly. But enough that I could vacuum up the rest, so that was a win.

Maura has also rediscovered apples. She’ll go through phases with some foods, and apples are one of them. Or maybe, I’m the one who goes through the phase where I forget how she handles apples and buy bunches only to end up with a lot of this happening…

 

 

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[image description – an aqua blue Fiesta plate with three apples, one partially eaten, one with one bite taken out of it, one with two bites taken out of it]

Apples are great. Apples taste good. Apples smell good…until they rot under your couch, or behind the piano, or where ever Maura left the partially eaten apple. Those apples in the picture? Weren’t found like that on a plate. The plate (hers) was left on the coffee table. One apple – the mostly eaten one – was found on the couch. The other two were in her Halloween pumpkin, along with two uneaten apples.

I put the uneaten apples back in the fridge. So if Maura wants one, she can have it. Which means I may be finding a half-eaten apple in my shoe tomorrow.

Should I deny her apples, or free sensory play, because it makes a mess?

Nope.

Should I train my dog to find half-eaten apples and throw them away for me?

Probably.

 

 

 

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My 14 year old graduates from 8th grade today – doesn’t that sound so normal?

26 Jun

It does, doesn’t it?

It’s so ordinary. Everyone who’s had a 14 year old goes through this. Maybe at 13, if they had a late birthday. But we all go through this.

Today, I will sit in a gym, on a bleacher or in a folding chair, and watch 8th graders in their newest dresses and nice shirts and Converse shoes file by and get a diploma. My daughter will be one of them. We will be one in a crowd, a snapshot in time where we shall blend a little. There will be others there, who don’t know my daughter, who won’t know how many disabilities she has or how hard she’s worked to get to the level she’s at.

I don’t know how she’s going to manage this – will she collect her diploma and shake hands and be good with that? Or will she bounce up onto the stage, give people hugs, shout “Woohoo!” to the crowd? It’s an either/or really.

Friday, they had a special ceremony for all the kids in her program who are graduating. A private gathering for students, teachers, peer tutors, and parents. A ceremony of their own, because not every child will be able to get through today’s ceremony (though all are given the option.) They had a party afterwards as well. The teachers went all-out on every aspect of it, and honestly, it was way more than I expected going into it.

The one thing that struck me though, looking at the peer tutors – other 7th and 8th graders – and my daughter, was how different my daughter was. Among her classmates in her program, she blended a bit. But around the other students, the “traditional” students, she just looked…younger. Even though she is as tall as most. Even though her clothes are from similar stores they shop at. Even though she’s the same age or even older than some. She just looked younger.

I don’t expect my girl to blend – because she’s my girl, and we don’t blend. But it was unexpected, to see her next to a typical 14 year old, and to see the differences.

But today – today she’ll be part of the crowd. Will she blend? That’s up to her. But there will be this moment in time where she will just be another 8th grader. And I will appreciate that moment, even while appreciating all the extraordinary that went into getting to this moment.

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The most spot-on fortune cookie fortune ever

1 May

Last night, we hit up our favorite Chinese restaurant. We go there often enough that a couple of the staff recognize us when we show up, and they all are very good with Maura.

Last night was no different – we sat, ordered, drank tea, ate, watched Maura work her magic with chopsticks (when in doubt, just stab the food with the stick), and then it was her most favorite time of the meal – cookie time!

We get the bill and three fortune cookies. We each take one and read generic fortunes of “Good things will happen in your future”, and eat our cookies. But then, one of the waiters who knows us showed up with a bunch more cookies, much to Maura’s excitement. She takes one, breaks it open, “reads” it (because she’s still learning how to read), and then passes it to Josh.

Josh reads it – “You will never need to worry about a steady income.”

Josh looked at his daughter. “No, that’s my job.”

And we laughed.

 

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But it was the truest fortune we’ve ever gotten there. Maura will never worry about money. Her brain doesn’t work that way. She sort of gets the concept of money – you need it to buy things – but beyond that basic concept, she is vague. Money for bills is not on her radar. Budgeting is a concept she doesn’t get. She knows we take care of her, feed her when she wants food, pay for stuff at the store.

We should just be happy that the girl is easy to please. She can have expensive taste, but at the same time, she’s just as happy with a $3 Slinky as she is a $500 trampoline. She doesn’t get brand names, so doesn’t need the $65 tee from Aeropostale, she’s cool with the $5 Old Navy tee.

Household goods? They appear magically via Target. Water? Electricity? Internet? Well that all just magically happens. Some days, I say yes to lunch at Chipotle and a trip to Target. Other days, I’m limiting her to just one thing at the store (which means she picks out five things and we haggle down to two or three) and walk her past the Starbukc’s while chanting “No, we bought a drink, we don’t need Starbuck’s.” (which is a lie, you always need a Starbuck’s, am I right?)

There is no cost involved in any of this in Maura’s mind. She knows is gift cards buys you stuff, and Mom’s cards can buy stuff, and cold hard cash can buy stuff. How the cards buy stuff is something she doesn’t worry about.

We do work on it. I’m the mom in the toy aisle going “That’s $20. That’s too much. Can we find something that’s $10?” Eventually, she may get it.  Maybe. In the meantime, I’m working on it.

So no, the idea of having an income, and a steady one at that, is not something Maura worries about. Or will ever worry about. She’s our forever girl for a reason, and this is just one of them.

 

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