A conversation with Maura

Today, Maura came upstairs to my bedroom, where I was watching a movie.  She hopped up on the bed with me and said “Blue’s Clues?”

“No, no Blue’s Clues.”

She handed me the remote.  “Here!”

“No Maura.”

“Penguins?” she asked hopefully, wanting to watch The Penguins of Madagascar.

“No, no Penguins.”

“I want Penguins!” she said brightly.

“No Maura, Mommy’s watching her movie.”

“Darn.” Maura said softly. Then she hopped off the bed and found something else to do.

I laughed at her use of “darn”, then told Josh.

A father’s love knows no bounds…

I’m going to do my first cross-posting on blogs, so if you read this here, you’ll read it on my other one

The reason for the cross-posting?  Josh is once again doing the Polar Bear Plunge for Special Olympics Michigan.  It’s a fundraiser, where crazy souls have a good excuse to jump into freezing cold water in Michigan in February.  Josh did this last year and raised $750.  This year, he’s round his goal up to $1000.  Someday, we hope Maura will take part in Special Olympics, we might as well start helping out now!

I know times are tough and people are broke.  Some can give more, some can only spare so much.  We don’t care about amounts.  Five dollars will mean as much as fifty dollars.  We will appreciate anything, even if it’s just a good thought and words of support. 

For more information, click here…

Big News!

Today, Maura peed in the potty!  We are all so very excited.  This is the first time since we started potty training about 10 days ago.  It gives hope that she will potty train this year, lol!

In other news, Maura has moved up in the dance world, going from Wee Dance to Ballet I.  Again, a big deal.  Maura followed along SO well last week!  She loves to dance and so I always want to make sure she’s in a class.  Being able to follow directions is a big plus to keep her in dance class. More so than standing on one foot (which she can’t do, so improvised.) 

Yes, Maura is really becoming a big girl!  How exciting!

“Labels are for canned goods.”

Someone wrote that, and one part of me gets it.  But the rest of me disagrees with its theory, that labels are a bad thing.  Labels seem bad until you have a child without one.  Only then do you realize how much power a label can have.

Labels open doors.  Labels gets you on special insurances through the state.  Labels qualify you for special ed services in the school system.  Labels get you into special therapy programs designed for your specific labels.  Labels can help create walks and rallies and fundraisers to help raise money and awareness for the struggles you go through. 

Labels help you know that you’re not alone.

A bit about Maura

Maura is entering a new phase in life – potty training.  So far, no results.  But that’s to be expected.  This is not going to be an overnight process.

However, language-wise, she is still making great progress.  It’s hilarious sometimes, what comes out of her mouth.  The other day, I called for her to come downstairs and she responded with “I’m coming Mama!”  Last weekend, we went to an indoor waterpark resort, and Saturday morning, we asked her what she wanted to do that day.  First, she said Blue’s Clues.  I asked her if she wanted to go play in the water and she did her “Hmmm” with finger on lips and said “First water, then Blue’s Clues!”  Granted, it came out “Firh wa-er, den Boo Boo.” But it was a plan of action for the day. 

She’s also figured out that when she has to say “sorry”, it’s because she’s done something wrong.  And doing something wrong makes her sad.  So when you tell her “Can you say sorry?”, she gets all sad and says “sowwy” in a pathetic little voice and sometimes even cries.  It’s cute and sad at the same time.

School is going well.  She’s learning most of her letters now and numbers as well…though she did learn how to count to ten in Spanish thanks to Dora the Explorer.  She’s also still taking dance, and her class will be rainbows in the recital!  I can’t wait because Maura picked out a rainbow bathing suit last week for our waterpark excursion, so she’s going to adore the ballet costume!   She still loves her penguins and riding the bus and is fascinated by our new little dog Cody.  She likes to take charge of his leash.  Cody is a Yorkie, so he won’t ever be able to drag her, lol! 

So life is good for Maura. Progress is being made all the time, which is all we hope for.  And yes, she’s still the happiest child ever with an ever-growing fan club!

To dream the impossible dream

Last month, Maura’s teacher Mrs. B. said to me “You know, I think we could get Maura potty trained.” Her aide Miss K. was also very positive about this idea. 

My response was “If you can manage this, I will give you cash out of my own wallet.” 

Yes, Maura is 6 1/2 and not potty trained.  Why?  Because we’re lazy horrible parents, that’s why!  No, it’s not because we’re lazy, it’s not because we have no clue how to potty train a child like others seem to think.  It’s just that we’ve had to wait for Maura to reach a level of maturity and fine motor skills.  We’ve tried a couple times in the past to see if she could get the concept, but it was a no go.  And when I say no-go, I mean, nothing happened. 

Mrs. B and Miss K feel that if we all work together, we can get this done.  I agree.  Months at the Kaufman Center showed me that children can be at all different ability levels and still manage to get trained (though in our defense, none of them had the fine motor finger issues like Maura’s dealt with.)  But I’m going to be realistic.  I don’t think Maura’s going to be one of those kids who is trained in two days or a week. I am embracing the fact that this will probably take months.  If she does it quickly, I will be thrilled.  But I won’t set myself up for disappointment if it takes a lot longer.  We all got the one book recommended by the AVB director at the Kaufman Center, we’re all reading it, taking notes, rearranging Maura’s schedule so we can fit in more potty time.

Here’s the big catch – Maura, despite sitting on the toilet several times a day – has never done either number in the toilet.  Ever.  She can do the whole routine except for the main event.  How we can get this concept into her brain is what may take a long time. 

I have this theory – potty training is the seventh circle of Hell.  It’s a special place where very bad people spend eternity potty training stubborn three year olds.  Anyone who has potty trained a child will agree with me (and those of you who say “Oh, but it was so easy for us!”, you can just be quiet, thank you.)  I’m hoping that this time around, with all the help I’m getting from the school, it will be a lot easier.  Meanwhile, I’m stocking up on paper towels and patience.

This weekend

Maura has been very much on her game this weekend.  I noticed it when I heard her calling “Mama!” from the top of the stairs.  I went to the bottom and said “Yes?”  She said “I need help!”  Alrighty then, up the stairs I went, to help her carry down the armful of stuff she had gathered.

We also watched a whole marathon of “Women of Ninja Warrior”.  If you have not seen the show, Ninja Warrior is four increasingly more difficult obstacle courses.  Those who survive Stage 1 move on to Stage 2, and so on.  Maura was really into the show yesterday, so I left it on.  Then I caught her “balancing” on a strip of fabric on the floor, going “Whoa!  Woaaah!” while walking it like a balance beam.  She got to the end, jumped off and cheered. 

After doing that for a bit, Maura then decided to stand on her head (feet still on the ground.)  She said something about her head – and then did a complete somersault!  She did several somersaults last evening, a couple of them were spot on correct.  For a girl who can’t always walk straight, this is a very big deal!  We all cheered and high fived her. 

And today, she almost got a whole shirt on all by herself.  Only one arm was not right.  This is a very important skill, as Maura sometimes likes to change several times a day and I get tired of helping her every single time.

Forget Holland

Every so often, I run across a post or email, singing the praises of “Welcome to Holland”, or some other similiarly veined essay about life with a special needs child.  Inevitably, it will have some line about “When we got the diagnosis…”.  And there, I lose my ability to relate.

Oh, sure, I can relate to some parts.  Little things like finding out there’s something wrong with your child.  That their future isn’t what you thought it would be.  But no where will you find an essay called “Welcome to LimboLand” which waxes poetically about having a child with special needs but no label to describe it.  No one ever writes about that one defining moment when the doctor said “We may never know what your child has.”  No one ever talks about going from doctor to doctor to specialist, spending hours online searching for that elusive label.

No, most of these essays are about coming to terms with the diagnosis of X or Y or A, and how it may not be what you expected, but it could be something more.  You may have wanted to go to Italy, but hey!  There are good things about Holland!  I’m sure they are.  But we didn’t get to Italy or Holland.  No, we’re in limbo, still waiting to be told what our destination is.  At least in Holland, you know where you’re at and there’s a map for it.  There’s a bit of comfort that comes with a label.  There are expectations and possibilities and guides for the future.

Without a label, there’s no map, no guide, no destination.  Instead, you’re a pioneer, naming things along the way, hoping for the best, prepared for the worst, and yet still caught off-guards at times.  There’s no support group but the one you make for yourself.  And there are questions.  Lots of questions.  Questions and implications, as if you haven’t spent the past months and years trying to find a label, a diagnosis.  There’s this belief, misguided as it is, that if you go to a doctor, they will give you an answer.  Guess what?  They don’t always have an answer.  It doesn’t mean they’re a bad doctor, or we’re bad parents who aren’t trying hard enough.  It just means there isn’t an answer.  No trip to Holland, destination unknown.

When your destination is unknown, you have two basic choices – go crazy or enjoy the ride.  Me?  I choose the enjoy the ride.  We make stops here and there, collect something once in a while, but otherwise, we’re driving without a map or an end to the route.  If we see something that interests us, we check it out.  Otherwise, we roll along merrily.  We’ve check out Holland, it wasn’t for us.  I check out Crazymakingland as well, it wasn’t that great either.  We peeked at a few more destinations, they weren’t meant to be.  So we wander.  We wonder while we wander, but always enjoy life. 

They say getting there is half the fun.  I’m not so sure about that.  But I also know that making the best of things really is the way to go here.  So forget Holland.  We’re making the best of LimboLand.

Maura at the Movies

Maura has discovered a new joy in life – going to the movies.  Luckily, there is a theater about 15 minutes away from us that has one new release a week that’s just $3 a ticket – and they serve organic popcorn.  Bring your own bucket!

Maura loves popcorn.  She loves getting the drink as well.  But she also enjoys the movie.  We took the kids to see Planet 51, which was cute.  Maura was all shades of giddy during the movie.  My friend laughed at all the antics.  Maura was bouncing up and down on the seat, cheering at all the appropriate parts, applauding when need be.  Sure, we got some looks from others as I worked hard to keep her from kicking the seat in front of us (I apologize to the lady who ended up moving from that seat - I did try!)  But she had so much fun – my friend and I had fun watching Maura have fun.

This week, I took the girls to see “The Princess and The Frog”.  I feared another rambunctious movie watching episode, as Maura let out this very loud squeal when we walked into the theater.  Which of course, made at least twenty pairs of eyes look our way.  But I told her that she had to be quiet, and she actually was.  Well, mostly.  She did squeal happily at a few parts.  Otherwise, she was quite good.  She enjoyed the whole movie, but as soon as the credits started to roll, she let out a loud cry of unhappiness.  Again, more eyes on us.  She just didn’t want the movie to be over.  I managed to get her out of the theater calmly…and that’s when she noticed there were all these other theaters.  She got all excited and said “Movie!” 

The little teenage girl working at the theater got a giggle as I tried to explain to Maura that we couldn’t just walk into any theater and watch another movie.

yikes!

I nearly deleted all the posts from the blog.  Bad Phoebe!  Bad Phoebe!

Today was one of those days where it was a cross between “I love being Maura’s  mom!” and “Man, I wish we didn’t have to deal with this crap.”

Let’s start with the crap first.  Literally, poop.  Poop and extreme diaper failure.  Neither is great.  Together is not fun.  Not fun at all. We experienced extreme diaper failure twice today.  The first ended in throwing Maura in the shower.  It was just easier.  The second wasn’t as bad, but wow.  I swear she didn’t have THAT much to drink while we were at lunch!

The staff at the Mexican restaurant were great with Maura.  She was all “HI!” to everyone, smiling, giving people hugs.  Then she discovered there was a soccer game on in the bar area, so hung out with them as they all watched soccer.  Our waitress was completely charmed by Maura and told me how in Mexico, she would be called an angel.  Aww.  She really is. She happily took over the restaurant (it wasn’t busy while we were there, I made sure she wasn’t disruptive) and they were happy to have her.  I don’t know why I’m constantly surprised when Maura charms everyone.  She just has that way about her.  Even when she’s having diaper failures, she’s still as cute and fun as can be.  Life is definitely more fun with Maura, which is why we take that bit of crap that comes along with our life with her.  Because the good stuff is so worth it.