Tag Archives: parenting

Life with Maura, day 5077

12 Apr

It is spring break, so my brain is officially mush. The teens can smell the weakness I’m emitting.

But right now, three out of four of the offspring are passed out in their beds. The fourth – who is actually the fourth – has slothed her way to the sofa to watch Teenage Mutant Ninja Turtles.

Eventually, though, she got hungry. Maybe it was the smell of my freshly brewed coffee that awoke a hunger in her. But either way, she schluffed from the sofa into the kitchen, pulled out bread and the jar of Nutella, and did her interpretive dance that says “Mom, make me a sammich.”

I didn’t want to make a sammich. I was sitting down, with my laptop and coffee.

“Why don’t you just eat some of the pizza in the fridge?” I suggested. Because cold pizza for breakfast is a family tradition.

Maura seemed to like this idea, and pulled out the pizza box. She tried to walk out of the kitchen with all the leftover pizza.

“Maura, no, just take one piece.”

“NO!”

“Maura…”

“Fine.” She put the pizza box on the counter and went back into the fridge to pull out the 2 liter of rootbeer I got to go with said pizza last night.

“No Maura, it is too early for soda.”

“NO!”

I got up and took the 2 liter from her. She balked. “It’s too early.” I stated again, putting it in the fridge.

“Noooo!”

She lunged for the fridge. I found myself splayed across the fridge doors doing my own “Nooo!” right back. Because this is what my life has become – guarding the refrigerator like the Crown Jewels, begging teens to not eat every damn thing in there.

Maura then went over to the counter and banged the jar of Nutella.

“Want me to just make you a sandwich?” I said with a sigh of defeat.

“Yes!”

Maura left the kitchen to return to her couch slothing to TMNT and I made the damn sammich that I should have just made in the first place.

And I’m still trying to drink my coffee.

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art credit – Mike Mitchell

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I’m not THAT parent…I’m thaaaaaaat parent

8 Sep

The good news is, Maura has the same teacher as last year. So she is wise to my ways, no warning is needed.

However, I can admit, I am thaaaaaaat parent.

Which is different from THAT parent.

Let me explain…

THAT parent is a term in the special ed world for those parental units who come in with their heads slightly spinning, flames shooting out their ears, quoting educational laws while working very hard to refrain leaping over a table or saying “Are you fucking kidding me?”

I’ll admit, at one point in Maura’s educational career, I morphed into THAT parent. But I earned that title when the special ed director told me she didn’t need my signature on the IEP, I didn’t have to sign it…after a long year of this woman treating me like I was demanding unicorns and limousines for my daughter when I asked for seizure training for staff (who were like “Um, yes, please”) and a proper emergency health plan.

I know. I’m so unreasonable.

So yeah, I turned into THAT parent. It’s a bit like Bruce Banner going Hulk. It’s ugly and not fun for anyone involved, but sometimes, it’s necessary.

However, I’m really more thaaaaaaat parent.

Let me explain…

Thaaaaaaat parent is the one who has been in the world of IEPs and interrupted sleep and has watched the same episode of The Muppet Show, with very special guest star, Sandy Duncan, about 389 times that week.

You’re tired and maybe a bit socially awkward, and definitely hopped up on the caffeine of your choice. You’re not quite fit for human consumption, and you toy between realizing you’re in desperate need of getting out into more normal company and knowing you probably shouldn’t be allowed in polite company because you might talk about poop or your theory about Dora the Explorer.

After years of jumping through flaming hoops and having nonsensical arguments with your offspring over underwear, thaaaaaaat parent has definitely cracked up a bit. Add some natural sarcasm and lack of organization, and I’m sure I’m a joy to work with for some school staff. I mean, I’m the gal who at the last IEP meeting spilled an almost full grande latte across the table. I did manage to only get myself, and restrained myself from sucking the coffee out of my jeans.

And when presented with 193 school forms to fill out every year, I get ridiculous. I may also want to see who’s paying attention, or give them a laugh. Because if we can’t laugh at the sometimes ridiculousness of our lives, well, what’s the point.

That’s why, in filling out an information form for Maura, I did this –

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See? thaaaaaaat parent.

Meanwhile, as I was trying to organize my kitchen/dining room yesterday, I found a crumpled up sheet of paper with words on it. I smoothed it out and saw it was the “student technology equipment user agreement”. You know, the form I sign to allow the school to give my kid a laptop for the year, promising we won’t swim with it or eat the keys, and if we do eat the keys, we have to pay for the cost of new keys? The form I totally signed for one child?

I looked at it and thought “Hmm…I bet this is Maura’s.”

I checked my email later on that day and find a note from Maura’s teacher about how she sent home a new form, can I please sign it and return it so Maura can get her laptop?

I replied with “Hey, found a crumpled up one just today myself! Haha! I’ll send the form back in tomorrow.” Took the form out of Maura’s backpack, along with her student planner they give every student and we use for communication.

This morning, I go to sign the form…and can’t find it. I check around, and still can’t find it. I do find the crumpled copy though, and went “Well, it’ll do.”, signed it, stuck it in Maura’s folder, which I then put in Maura’s backpack…and wondered “Hmm…planner’s missing…”

But since we’re playing “guess how early the bus will be today?” this week (13 minutes from time we were told, four minutes earlier than yesterday) I threw the backpack at Maura and she ran to the bus. Emailed the teacher from my phone that she was getting the crumpled version back because I lost the new form.

Then sat down at my desk. Checked Facebook. Sipped on coffee. Moved my keyboard a little. And found the form and planner just there. Under my keyboard. Where I’d surely notice it.

So yeah. I’m thaaaaaaat parent. I warn the school I’m thaaaaaaat parent. Not that they couldn’t guess after I showed up at the IEP with green hair, spilling coffee everywhere.

It’s okay. Better to be thaaaaaaat parent than have to be THAT parent.

 

Post script – I love Maura’s school and the people who work with her. They are not only great with her, but great with me, lol! We’re very lucky to be in such a fantastic situation. 

In case I’m not clear, our life is a good one

9 Aug

I turned on the Olympics, the sound of the announcers voices luring Maura to the room where I was at.

“Swimming pool!” she stated.

“Yep. They’re swimming.”

Maura plops down on the couch next to me. She spots that I’m knitting. She gets up and goes over to where I keep the acrylic yarns, picks out one, goes over to my container of needles, picks out a set, and sits back down next to me.

“Are you going to knit something too?” I ask.

“Yes!” she states, then looks at me, holding out the yarn and needles. “Help Mom?”

Maura can’t knit, but I cast on several stitches anyway. “Here you go.” I said, handing the needles and yarn back to her. She eyes the row of stitches.

“Off.”

“Okay, then just pull them off.” I said.

Maura does. “I did it!” she announces, delighted. Then she pokes both needles into the ball of yarn, and starts knitting her own way.

This is our life together. Maura eyes everything I do, then tries to see if she can do it too. If I don’t want her getting into something of mine, I have to be more creative in tucking my stuff away, but I also make sure that there’s something similar for her to try. Because she wants to try everything. She’s like her sister and father in that aspect. It’s one of her strengths, and it’s something that I find scary as a parent. But I find it scary in her sister too. My girls keep me on my toes.

At this stage, I’ve come to embrace the fact that my life is nothing like I thought it might be when I was a single young woman in college. I thought I’d eventually move back to my hometown of Chicago. Instead, I’ve lived everywhere else possible. I wasn’t sure I’d ever meet a guy, only to end up one of the first of my friends to get married and have kids. I knew I’d have kids, but it was never on my radar that I’d end up a parent of a child with any sort of disabilities. Speech impediments? Yes. Those are a family trait. Quirkiness? Well, you wouldn’t be one of us without some quirks. Epilepsy? Never on my radar. Cognitive disability? Even less on my radar.

No, life didn’t turn out quite like I thought it would. It turned out way more interesting.

I never thought I’d have a child who would depend on me so much. My oldest, he was the most independent baby ever. At age eight, he announced “I can take care of myself Mom.” His next two siblings were also amazingly independent creatures, hitting milestones early, each one working hard to keep up with the older one. Then Maura came along. At first, I joked that with three older siblings, she had to be different to stand out.

Thirteen years later, she’s still standing out in her own way – like her siblings. And like her siblings, I have the same basic dream for her that I do for them – that she, and her siblings, are happy in life, and self-sufficient, and reach their full potential.

We joke that she’s our “forever girl” as she will need us forever. But I try to make sure people understand, we’re okay with that. It’s not the life we dreamed of, no. But my husband dreams of having a private island. I dream of being an indie rock star (yes, still). Those lives haven’t happened yet either. But I dreamed of having fun colored hair, and I got that. Josh and I dream of getting an RV and road tripping – we’ve just adjusted that dream to fit three in the RV, not two.

Has it always been easy? Nope. But parenting in general isn’t easy. Life isn’t easy. I never expected easy, even if every so often, I crave boring. I said this once to my therapist, who laughed and said “You’d be bored with normal.”

It’s true. I find normal…abnormal. I’ve never really had it.

Yes, life with Maura is more hands-on, requires more from me. I won’t deny it. But I read articles like this one, where the journalist goes out of their way to describe a life such as are full of burdens, where the mother has no care-free times, where life is a bit grey and sad.

That’s not our life.

Yet in reading the article, I see similarities. Yes, Maura will need us forever, at least, that’s the trajectory right now. Her siblings are aware that someday, they will have to take over for us, which is why for now, I try to let them just be normal siblings with her. Right now, we are pretty certain Maura will never drive a car. But she still has a love of cars that is seen throughout my side of the family. She isn’t the most communicative of people, not verbally, but still still can get her point across, make her opinions known. Yes, there are many similarities in our stories, but the attitudes are different.

I don’t look at my daughter Maura and see lost opportunities, a lost life, thwarted potential, a burden. I see this bright, amazing, individual who still likes to hug her mother, who steals my shoes, who is clever in so many ways. She’s also maddening and frustrating and stubborn – because she’s a teenager, and teens are supposed to push our buttons, it’s how they mature. She is a multi-dimensional person, just like the rest of us.

A blogging friend of mine visited us last weekend, and one of the questions he asked was “What have you learned from Maura?”

It took a moment, as my mom brain flicked through mental files of the past twenty years. I’ve learned so much from all my kids. But with Maura, what came to mind was enjoying life. She enjoys life so much. I tend to let doubt and worry hold me back, and she’s there, diving into life, laughing all the way. A lesson most of us could use.

Life isn’t easy – I never expected that. But our life is a good one.

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