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Tag Archives: special needs parenting

Dear Target

6 Jul

You know I love you. You and me, we’re bffs4evah.

However…

Nine days ago was our last day of school. NINE DAYS. We’re just now getting used to our summer vacation routine. Needless to say, I was highly unprepared to see ALL the “Back to School!” stuff out at our local Target.

I should’ve seen it coming. Land’s End has already sent me their “Back to School” catalog (which arrived a week before school was over). You started clearance-ing out summer stuff a couple weeks ago, which led to my hasty buying of lawn chairs and outdoor lighting. You’ve been slowing putting up those “dorm life” end caps.

Still, I didn’t expect to see the fully stocked school supply section today.

And I had Maura with me.

Thus began the Great Backpack Struggle 2017. We go through this every year. Maura sees that wall of backpacks and becomes a bit rabid. Backpacks are her thing. HER THING. She just got a new one two weeks ago, after I smuggled out several old busted ones from her room, and hanging up the four she had left. She’s been very happy with her new backpack.

Until two hours ago, when she desperately needed a NEW backpack.

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I said no.

She tried to put it in the cart.

I said no, put it back.

She threw the backpack at me.

I told her we were leaving.

There was a meltdown. We spread disability awareness in that particular store. Loudly. Along several aisles, as she was all “Fine! I’m leaving!” and stormed down a few aisles.

But she calmed down. It was very impressive how she pulled it back together. So we got the cart, left by the backpacks, and despite a few longing glances towards the backpacks, we got the heck out of that section.

Oh sure, we ended up with a Poppy from Trolls doll, which made the world better, and is cool because Maura didn’t have a Poppy doll and is obsessed with Trolls, but that’s not the point.

The point is – why is back to school stuff out NINE DAYS after school let out? Seriously? Why? We’re all broke here from end of school stuff and trying to buy all the summer stuff just as summer was finally starting here in the PNW. Now we have to nab up all the pencils and notebooks because they’ll be all gone come August 15th, even though school doesn’t even begin until after Labor Day in September, and some of us won’t even know what we need until the, but by then it’ll be too late to buy school supplies and the Christmas lights will be out…

I know that some of this is being location-specific. I know that some areas of the United States have been out of school since the latter part of May. And that you’re running a large corporation that has to suit the needs of all states. Whether or not that timeline suits everyone involved.

All I know is that for the next six weeks, I can’t take Maura to her favorite store because I don’t need to deal with a meltdown over backpacks every. single. time.

It’s not me, it’s you.

I’ll catch you on the flipside!

 

 

 

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Be wary the jobs you suggest to me

12 Jun

“Hey, we have openings for people to work with adults with disabilities. Would you be interested in this job?”

A very nice, lovely someone asked me this, not knowing the completely honest yet probably unexpected response I’d have.

“Dear God why? Why would you ask me that?”

Not my best moment.

She wasn’t the first to ask me such a thing. I inspire that train of thought in people. “You should work in special ed!” or “Have you considered started a program for children with disabilities?” My reactions are always similar – I’m startled, and blurt out something that is probably considered rude.

I know it’s meant as a compliment. I am vocal about helping those with disabilities, advocating for my daughter, educating people on what our life is like. They see me with Maura, us getting along famously, us working together, Maura happy and me pretty chill.

I make this shit look easy.

So of course, I would be inspired to make it all my life’s work.

I just can’t.

I’m fantastic with Maura’s disability because it’s what I know. I don’t know other disabilities as well, or some at all. I can handle autism because I’ve been around it. But otherwise, I’m about 10% better than the average person when it comes to all sorts of other disabilities.

I would make a horrible special ed teacher because I’d make a horrible teacher. I’ve never been inclined to teach. Actually, anything requiring a leadership position makes me break out into a sweat. The idea of running a program? I’d probably break out in hives. The idea of being in charge of a program makes me nauseated.

I know my limits.

These suggestions are usually given by good people who don’t have a child with disabilities. So they miss a vital point. That point? That I’m already doing this 24/7, 365 days a year, until the end of my time. I am living the dream, caregiving with the best of them, always on call, always on duty. When I’m not directly dealing with Maura, I would like to use my time in other ways.

Wow, that sounds selfish and horrible, doesn’t it?

Yet, no one suggests a regular mom do more regular mom things while her kids are at school. “Oh, you have kids? You should totally work at a daycare! You’re so good at changing diapers!” No, in those cases, people are all “You should totally pursue other interests, be a fitness instructor because you love running.” No one suggested I become a special ed teacher before I had Maura – and I have friends who *are* special ed teachers.

It’s okay though – I feel guilty about not wanting to work more with people with disabilities as well.

But also, I know  my limits.

The thing is, I have my own pile o’ issues to work on when I’m not keeping Maura alive. I’ve got 44 years of matching baggage to sort out while my anxiety hovers over my shoulder breathing heavily onto my neck. I’ve got weight to lose, and a healthy living train to get on because I have to live forever. I have a book to finish revising. I have laundry to catch up on, and groceries to buy. I have that day, once in a great while, where I recharge by hiding in my room binge-watching Netflix, because I don’t always handle stress well.

I also need to learn how to answer these questions with a bit more tact. That may take awhile, as I have a history of blurting out responses that require more tact.

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Meanwhile, jobs I would trample over my own offspring for are as follows, so please, offer them to me –

  • working in a bookstore, because mama needs a discount on books
  • cocktail taster
  • hammock tester
  • permanent fixture at coffee shop
  • paid writer
  • museum wanderer
  • Lush bathbomb reviewer
  • foot model for all those “feet on beach” shots
  • paid shopper for Target
  • professional napper

Serious inquiries only.

 

 

A backpack of one’s own

9 Jun

“That’s mine!” I stated with some resignation mixed with frustration. Because once again, Maura nabbed something I bought for myself and claimed it as hers.

This is an ongoing problem. Maura doesn’t differentiate between the stuff that is hers, and the stuff she wants to be hers – to her, it should all be hers. I buy myself new shoes? She’s trying them on. I get a maxi skirt at Target? She’s wearing it before I’m done unloading the car. I spend three months searching for a good backpack for myself to haul my writing gear in because she took the last backpack I bought? She’s got it stuffed with tutus and on her back without me even realizing she’s taken it from the place I thought I had hidden away.

It’s not just my stuff. She gleans from everyone. Collin was missing his wallet. We started searching. I found Miriam’s wallet in one of Maura’s backpacks before finding Collin’s in another of Maura’s backpacks. Sean was missing keys on a lanyard. Maura had them. Josh didn’t even know when Maura nabbed $120 in cash from his bag. No, that one, I got an email from Maura’s teacher with “So Maura brought in a Dooney & Burke purse with $120 in it. I’ve locked it in a cabinet until you can come retrieve it.”

The purse came from the thrift shop. I’ve yet to use it because every time I turn around, it’s in Maura’s room.

It’s frustrating, and something that we’re still trying to teach her, to make her understand. Our stuff is our stuff, even if she wants it. Other people’s stuff is other people’s stuff, even if she wants it. Just because she wants it doesn’t mean she can claim it as her own.

But she doesn’t get this. Which is why, as Maura and I were leaving my friend’s house, I searched her backpack. And found two things that didn’t belong to Maura. Once home, I found two more things that belonged to my friend in Maura’s backpack. It was disappointing – because Maura choose to steal books when I know my friend has a fantastic jewelry collection. Luckily, this friend also has a fantastic sense of humor and applauded Maura in her choice of books (an art history book and “The Agony and the Ecstasy”).

It’s not easy though when you live with this every day. Every day, she’s swiping a sibling’s possession, sometimes one they need, like their wallet or their cell phone. Maura has two of her own wallets, but she wants her siblings. She wants to take Miriam’s sketchbook, even though I have given Maura her own notebooks. She wants my legal pad full of notes, even though she has her own legal pad. We can provide her with things, but she wants more, she wants the new stuff that comes in. She has little self-control over it at times.

Which is why, despite owning several backpacks of her own, Maura last night swiped my new backpack again. Even after I explained that it was mine, and she understood that explanation enough to be unhappy about it. I didn’t see her swipe my backpack, Josh found it tucked away in her room this morning. He quickly hid it while she was in the bathroom and made her choose one of her own backpacks.

I don’t know if this is a phase or not, but even if it is a phase, I am braced for the fact that it is a long-term phase. Maura goes through phases slowly, so this compulsion to take other people’s stuff? Could last years. Some days, I’m okay with that. Other days, it’s just really tiring.

But for now, I’m just going to stake this one claim on this one backpack I bought for myself.

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