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Why I keep trying

19 Aug

We’re out of food – a common experience when you live with teenagers and they keep inviting friends over.  It’s a near-daily experience.  But the food levels in our house have become a bit tragically low, even for us.

So yesterday, I decided I should go buy lots of food.  I keep saying I will then never do because of this or that, but yesterday, I thought it could be different.  That plan went south when I said out loud “I’m going to go food shopping.”

“Shopping?” Maura piped up, sudden eagerness in her voice.  She looked down at her feet.  “Oh!  Shoes!”

*sigh*

“Okay Maura, go find your shoes….”

She spent a good five minutes being way dramatic about finding shoes – or not being able to find shoes because despite the shoe rack in the entry, and the shoe rack in the closet, and the mats for shoes by the door, and the space for shoes I made in her own closet – we can never find shoes.  (Though to be honest, yesterday, I couldn’t find one of my shoes either.  It’s been a long summer.)  So I asked a teen to help find shoes for their sister.

You know, it’s amazing how quickly they find stuff when it means I’ll take Maura with me…hmm…

My “Great Stock Up on Everything” plan turned into “Run to Target, grab some laundry detergent and enough food to get us through the evening” plan, as I was already regretting taking Maura with me before even getting out the door.

We got to Target, and glanced at the videos.  I’d had hoped to find a copy of “Aladdin” (didn’t) and Maura ooo’ed and ahh’ed over all the brightly labeled choices while I cringed.  I wasn’t sure we’d make it out of the aisle without a scene. She began to say “I can’t…I can’t…” which is her way of saying “I can’t make a choice, there’s too many options, I’m overwhelmed, I don’t know what I want, I’ll probably have a huge meltdown soon…”

But somehow…we got out of the aisle without a scene.  Easily.  I said “Let’s keep looking.” and she said “Okay!”  She did nab a Frozen sticker book on the way, in an attempt to get “something” – I said “Hey, let’s look at it first…oh…it’s stickers…” – Maura doesn’t care for stickers – “Let’s look at the coloring books instead.” I suggested as I put the book back.

“Okay!”

Well, that was easy.

We looked at coloring books, which got a big “No.” from her.  However, the next aisle had composition books, and the girl loves those things and plucked a bright pink one off the shelf.  I okayed it – anything to keep her away from my paper.

After a brief stop in the laundry detergent aisle, we ended up in the school supply section – Maura has a thing for paper and pens, she will go around with notebooks and pens and scribble all day, so this all made sense.  She glanced over everything, but I could tell that the busyness of the section was beginning to get to her.  She became less cooperative.  I tried steering her towards something and she yelled “No!” and ran.  This was my cue to get her out of the section.

And then, we turned a corner.

And there were ALL the backpacks.

All the girly, pink and purple, princessy, sparkly, girl powery backpacks.

I watched Maura glance at them all and suddenly, her eyes got wide and she gasped.

“Oh!”

It was a Frozen backpack.

A Frozen backpack that lights up.

A pink and purple Frozen backpack with sparkly sides that lights up.

She wrestled her own personal Holy Grail off the rack and hugged it.  I glanced at the price, and breathed a sigh of relief.  On sale for $14.99?  Done deal.

We raced through the food section with the happy girl pointing out every time that backpack blinked (as long as it’s moving, the lights twinkle…even sitting in the cart, it was twinkling) as I grabbed snacks and cereal and corn dogs.  We negotiated over “orange” juice (some weird veggie juice blend) and got apple juice instead.  I also steered her away from the “fruit and veggie” orange colored popsicles and pointed to the regular popsicles below.  Yes, I steered my child away from the “healthier” choices.  She eats cherry tomatoes like candy and grapes until she’ll burst, we’ll be fine.

She then happily bypassed the clothing section – a first – so we could check out.

I noticed then that she got nervous in line. I looked at her and said “Don’t worry, we’re still getting the backpack!” and she suddenly smiled.  Yes, I can add “mind reader” to my resume now.  She then handed me the backpack, did a happy dance, I put it on the belt as she jumped up and down in sheer total excitement, I chatted with her about how she could be happy, but maybe not this loudly. The nice man scanned it, put it in the bag for her, and handed her the bag.  She instantly cheered and “Woohoo!”ed, and the woman in the next lane smiled and agreed that the backpack was fantastic.  The nice cashier man even loaded up the cart while I tried to contain Her Most Excitedness, who was still hopping about laughing.

There was one moment, where I thought “Wow, this is still not age appropriate for her” and wondered about her being 30 and hopping about with happiness over a doll or backpack.  But then I was all “She’s happy, anyone who doesn’t like it can shove it…” and went on with life.

But we weren’t done.  No, Maura spotted the restroom sign and did her potty dance (she only does this when there’s an audience…sigh…).  There I am, with a cart of stuff, and she wants to use the restroom.  Then she spots Starbucks and wants to go to Starbucks as well.  So I say “Let’s put our stuff in the car, then come back inside, go potty and go to Starbucks.”

“Okay!”

Um…okay…

I give the line again on our way out – first car, then potty, then Starbucks.  She’s happily cooperative.  She got it.  She understood, and helped me put stuff in the car without batting an eye.

So we went back in, went potty, then Starbucks.

When we got back in the car, she asked, “Home?”

Yes, we’re going home.

We’re going home after the most successful outing in recent memory.  No meltdown, no staring from others, no crying from either of us.  Sure, we had corn dogs and popcorn for dinner.  The teenagers didn’t mind one bit.  But this is why, even though it doesn’t always go this smoothly, I keep taking her places.  Because she can do it.  We can get through this.  We’ll have our bad times, but we’ll have our awesome times as well.  And hopefully, with practice, we’ll end up with more awesome times than not.  Case in point – the first day of swimming lessons, she cried when I changed her after the lesson was over, but we pushed through it.  The next one, she fussed slightly then was fine.  Last week?  No fuss.

We can do this.  Sure, the next outing may contain a meltdown, but we will get through it.

And by the way, Maura slept with her new backpack, then woke me up bright and early to show me her new backpack, and is now wearing the new backpack.  Because it is the Best Thing Ever to Have Been Purchased at Target Ever.

Best. Thing. Ever.

Best. Thing. Ever.

 

 

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Words and meds and more words

12 Aug

This has been the Summer of the Seizure Meds – or “The Great Weaning Experiment”.

After her latest EEG showed no seizure activity, we went ahead with attempting to wean Maura off the seizure medication she’s been on since December of 2007.

When she started on the seizure meds, I noticed that her balanced improved greatly and she started speaking more.  Now that we’re weaning her off them – I’m noticing she’s talking more again.

Funny how that works.

We’re down to 2 mls twice a day, which is probably less than what she originally started on all those years ago.  Last night, as she chattered away, giggling and laughing and being so very “on”, my husband joked “Can we put her back on the meds, just to chill her out a little?”  Because holy cow!  Usually at night, she’s tired.  These days, she’s wide awake.  (Of course, that could be because she’s being allowed to sleep in every morning.  The girl is not a morning person, never has been.)   And the words are coming out more.  Oh, she’s not suddenly “normal” – she’s not bursting with newfound maturity to a degree.  She’s still Maura.  But the words – the songs. She’s singing along with songs much more.  And speaking lines from movies (not in an echolalia way, just along with them) – needless to say, if I say “He’s a llama!” she can say “He’s supposed to be DEAD!” – yes, “The Emperor’s New Groove”, why do we even HAVE that lever? Also, singing along with all of “Let It Go” and My Little Pony songs I didn’t even know she knew.

Knock on wood, but I think it’s going well.

She’s still a bit of a squirrel, still has her opinions and tantrums, but we also have more words.  More words in a row. It’s a gift that I’ll take.

she can't really read yet...but she loves books just the same.

she can’t really read yet…but she loves books just the same.

 

Oh, and Maura decided that she wanted her hair cut.  Why yes, I immediately jumped on that before she did it herself, lol!  We’re back to a bob, and she loves the feel of it on her shoulders.

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Happy with her haircut

 

Staring

8 Aug

Picture this -

A tall girl, who is obviously old enough to know not to behave like this, is screaming like a banshee in a shopping center. She chucks her book and her purse and squats down on the ground.  Her mother picks up the book and purse, hefts the howling girl who is almost as tall as her off the floor, and leads her to a seat.  She then gets eye level to the screaming girl, telling her things like “eyes here” and “use your words”.

The mother never loses her cool, and sometimes even cracks a smile as the girl gets caught up in her hissy fit.  Finally the mother takes her by the hand and marches her out the mall doors, as the girl is still howling, sitting her on a bench just outside in a “time out”, while telling her that she’s being “very naughty” and needs to stop screaming.

There is no abuse happening.  The mother doesn’t lose her temper, isn’t mean to the child.  Just firmly trying to take control of the situation.

And while she’s trying to calm her child down, she meets your eyes.  Your wide, unblinking eyes that are staring at her, your mouth slightly gaped open, or maybe a slight frown on your face as your steps slow down so you can fully take in this apparently unbelievable sight you must gaze at.  If the child was small, toddler or preschooler sized, you wouldn’t be staring.  You would just keep moving, maybe smile in solidarity of “been there, done that”, or shake your head with “When I have kids…” or “That’s why I’m never having kids.”

But it’s different when it’s an almost five foot tall child howling and screaming.

It’s a sight you just can’t tear your adult eyes away from.

You must stare.

You stare at the child.  Then you stare at the mother.  The mother meets your stare with her own steely unblinking stare, daring you to say something.  Waiting for you to look away.

Yet you keep staring.  You keep eye contact with the mother until finally, you blink first and look away.  Keep walking.

But of course, you have to look back a couple more times at the mother and screaming tween-aged child.

You can’t help it.

Except you can.

You are the adult.  You’re the one in control of your actions.  Not the screaming child.  You, the intelligent adult who choses to stare at the upset special needs child who is still learning to express herself, and only knows how to express unhappiness or frustration by screaming.  You choose to stare at her while she’s highly visibly upset, gaping at her, frowning at me, confused by the whole situation.

Does your staring at us help the situation?  No.

Does it ever occur to you that she might have special needs?  I have no idea.  None of you have asked.  If any of you asked even “Wow, what happened?”, I could give you a quick “She has special needs, she can’t always control her emotions.”  And then you’d be more enlightened.

But people don’t ask.  They just stare.

I deal with you staring, gaping, frowning rubberneckers of life every time I step outside with my child.  Every time Maura has a public meltdown, I not only have to quickly diffuse the situation with her before it gets out of control, but I must deal with your silent judgment, your stares, your rudeness, your wiliness to insert yourself into our situation with your gaze, but your obvious unwillingness to try to help or even understand what is going on.

So I stare back.  Even though I was taught by my elders that it is impolite to stare.  That it’s rude to gape at people.

Mostly though, I tend to ignore most of you.  It’s a trick I’ve learned.  When my child is in the midst of a complete and total meltdown, the world around me vanishes and it’s just Maura and me.  I will ignore everyone around us and deal with just her, to the point that I will just take her by the hand and march her out of the place we’re in.  See, taking her out of the situation helps calm her down.  I’m not taking her away from your prying eyes to abuse her without witnesses.  I’m taking her away from the visuals that are feeding her tantrum.  If you follow us, you’ll see me find a place for a “time out” – a seat, a bench, a low wall she can sit on – while I tell her sternly that “that is enough, you need to stop screaming”.  Not meanly, just sternly.  There is a difference.  And she will calm down, and there will be hugs, and I may actually laugh again because I can see the ridiculousness of the whole situation. And we shall move on.

Granted, when this all happens, I will also abandon people we’re with in my haste to get her out of whatever area we’re in – my husband and teens have learned to just catch up with me. My friend – who was with us this particular day when Maura threw a screaming fit in the mall because she was, as it turns out, hungry and overwhelmed by choices at Old Navy and upset because I wouldn’t buy her just anything – did catch up with us.  She asked, for future reference, what she could do to help. Because she’s a real friend, she laughed when I told her this -

“Stare people down.  Give them the stink eye.  Wave the rubberneckers along, nothing to see here.”

 

No need to stare...really...

No need to stare…really…

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