To Infinity and Beyond!

Beyond infinity, I think that’s roughly where I’ve been recently.  Or maybe I’m just in a major Disney mood…either way, I’m back!  I think.

It’s been a rough couple of months around here.  Transitioning through the end of the school year for G (harder on A than on anyone else) and handling therapy scheduling changes for A at the same time has really taken its toll on me.  As a result many things have suffered including my writing, eating, breathing, ability to carry a coherent thought, and sleeping.

Yes, the rumors are true.  It is possible to sit down and immediately fall asleep without realizing it until many hours later when you wake up in a very uncomfortable position that should not be humanly possible on the couch.  This particularly annoying development has led me to conclude that no matter how much I may want to write, the rest of me has other plans that center on a close, detailed observation of the inside of my eyelids.  And I was tired of waking up to random letters strung together on the screen that clearly indicated my pathetic and entirely useless attempts to write while no where near coherent.

Still with me?  Good.  I’m lost already.  Where were we?

Oh right,  the last 2 months.  Let’s see…where to start…

Well, A has made some minor progress with eating.   She has recently updated her menu to include cinnamon & brown sugar Pop Tarts (and yes, they have to be the brand name ones) along with banana bread (no toppings and at room temperature only thank you very much).  Little bits, but it does allow me to get a little more creative with her meals.  She tolerates both preferred and non-preferred foods on her hands (sometimes) now, which is a big step forward.

"Look Mom! No spoon!"

“Look Mom! No spoon!”

"Yum!"

“Yum!”

I still don’t think we could live without yogurt.  That and PediaSure are still my life savers when A is having a really bad day.

Her “bad days” are fewer now than what she used to have, but when she has one it tends last for a few days.  Not fun for any of us.  Recently she had a bad week that I think was harder on me than on her.

About a month ago A had a week where her body sense was so off that she could barely negotiate a playground we had been going to almost every day.  Normally she would take off and run and climb without too much trouble.  This particular week, she was crawling just to make it up 3 (yes three) small steps to get onto the equipment.  It was so hard to watch her struggle.  Most mornings we had the place to ourselves, but one morning there was another little girl A’s age at the playground.  A was eager to play with her (yay for improved socialization!) but was still unable to negotiate the equipment without crawling.  I stood back and watched to see if A would follow the other girl up or just stay on the ground where she felt more secure.

A started to crawl up the steps while the other little girl bounded up them without holding on to a thing.

This is hard to write about.  It’s been a little over a month but I still have trouble writing or talking about this because in a way it still hurts.  More so than I’d like to admit.

Seeing the other girl make it up the steps and across the platform with no hesitation, A realized she was different.  That one moment on that one day, she became aware she wasn’t like every other kid on the playground.  I could see it in her face, in her eyes and it hurt.  I wanted so badly to scoop her up and take her home.  To protect her in a way.  It took everything I had to stay standing off  to the side and let A decide what to do.  A decided not to be left behind.  She grabbed on to the railing and pulled herself upright and fought for every step to make it up the stairs and across the little platform to where the girl was standing and waiting for her.  A held onto the railing like it was the only thing keeping her upright (and I think it was) and pulled herself along one slow, careful step at a time.

It was so hard to watch but also so wonderful at the same time.  My little girl didn’t give up.  She fought to keep up and not be left out and she did it.  She was exhausted when we left the playground 20 very long minutes later but she did it.

As hard as it was to watch her struggle and as much as it hurt watching her realize she was different, I am so proud of her and I know that she’ll be okay in the future.  I don’t know how this new awareness has affected her since she doesn’t have the words yet to tell me, but it doesn’t seem to have dampened her spirits at all.

We can only go forward from here and as we do I pray that A can continue to face whatever comes her way with the same courage and determination she showed on the playground that morning.

In the meantime, I’m off to a more comfortable place to sleep before I fall asleep at the computer!

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Bacweems, Playgrounds, and More Sweet Potatoes

Yes, “bacweems” is a word, a really bad word in A’s language.  For the rest of us, it means “vacuum”.  Generally not something to cry over, but recently all I have to do is say vacuum and A is screaming.  Yes, the noise bothers her that much.

So why am I talking about vacuums?  Mostly because I find her mispronunciation incredibly cute and hilarious, but also because it’s rather fresh in my mind right at the moment.  I mentioned this morning that the house needed a good vacuuming and just like that, her day was ruined.  At least until I took her to the playground after dropping my son at school.

The playground has been my lifeline recently.  I discovered 2 weeks ago that taking A to a playground before or after therapy (depending on time) made a huge difference in her behavior.  She was able to get the input she needed and run the wiggles out all at once.  It has also resulted in a major increase in her appetite, which is always fantastic!  Another plus is that I am getting a whole lot more exercise than I used to and can now run a mile without feeling like I’m going to pass out (haven’t done that in number of years).  Of course, I’m still passing out at night right after that kiddos, but at least I’m making it through the day now!

It’s amazing to watch A navigate a playground effortlessly one day and the next day notice that she can barely manage the steps at the same playground.  Times like that I realize just how difficult things must be for her day to day, and yet, she just bravely pushes on and keeps going.  Her new thing, when she is having difficulties, is to constantly say, “I can do it!  I can do it!” until she completes whatever she’s trying to do.  And yes, we do celebrate when she does whatever she was trying  to do, even it’s just climbing three steps.  The Little Engine that Could doesn’t have a thing on my kid.

After making our daily trips to the playground, A not only eats better, but she’s sleeping better too.  That’s been the biggest blessing for me.  Getting back  to regular naps and sleeping through the night have made a world of difference for all of us.  Mind you, we weren’t exactly inactive before.  My kids and I are very active people, but finding the right times and outlets for A’s needs took a bit of doing.  It has gotten easier though as we have made progress in OT with her sensitivity thresholds.

Speaking of progress, it continues with the sweet potatoes!  It still may not seem like much to many, but A is semi-regularly eating about 2 tablespoons of sweet potatoes with minimal fuss as long as she is seriously distracted, and it doesn’t touch her lips, and I feed it to her.  Sounds like a lot, right?  It is.  But soonish she’ll be able to feed it to herself without a problem and then we’ll move on to other things.  In the meantime I will be single-handedly keeping my local sweet potato farmers in business for the foreseeable future. I’m sure they are doing happy dances as I speak…write…whatever it is I am doing right now.

As much fun as this has been, my alarm has just rather loudly informed me that it is time to go get my son from school.

Yes, I need an alarm to help me keep track of time when I’m writing otherwise I would probably be at it for another hour or so.

And with that, life goes on and the playground beckons for one last visit before the week ends and the necessary weekend morning chores intrude on my fun.  Guess I’ll just have to pull out the Disney music so we can dance while we clean! After all, a spoonful of sugar helps the medicine (and sweet potatoes) go down!