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!

 

Indy Cars, Snuggie Vests, and Sweet Potatoes

Two weekends ago we enjoyed our annual Indy Car race.  My wonderful hometown had the pleasure of once again hosting the opening race for the 2013 Izod Indy Car season.  This was A’s second race and, in my humble opinion, it went even better than last year.  Granted, A’s vocabulary is at least 10 times what it was this time last year, but she actually ate without a fuss this year.  Yes, we were away from home and she still ate well.  That never happens, even eating outside at home can throw this child off, but she ate surrounded by noisy cars zipping past.  Turns out the cars were the explanation.  For a child who has auditory sensitivity issues, the sound of the Indy car engines has a calming effect on A.  I cannot even begin to explain it, but I’m not about to argue with it!

As usual, I had packed food for the day that I knew A would eat (mostly yogurt and other “squeezie” foods), but she surprised me by munching on mini Nilla Wafers, bread (from my sandwich), and chips (her brother’s).  She didn’t ask for the yogurt, she wanted the “chewy” foods (i.e. – stuff that actually requires chewing).  That is such a change from her usual M.O. that I almost couldn’t believe it.  Almost.  Needless to say, this opens up a few more possibilities for local excursions.

A has made remarkable progress in the past month.  Since race weekend her speech has exploded.  It has been amazing listening to her and realizing that not only can I understand her, but others can as well.  I cannot even begin to describe how exciting it is.  Honestly, unless you have the “been there, done that” shirt it’s hard to explain.  The most remarkable bit of progress came just this past week though.  A took 10, yes 10, bites of mashed sweet potatoes.  Granted, they were “ant bites” (what we call really small bites), but she took them without a fuss or gag!

The cause for this sudden progress?  Her “snuggie” vest.  In therapy we have been using a SPIO vest on A with amazing results.  She calms down and can tolerate sensory input much better when she is wearing the vest.

Quick explanation for the confused.  A SPIO vest is a compression vest that provides the deep pressure and sensory feedback that help with body awareness.  More info can be found at www.spioworks.com

Unfortunately, the day that we are able to use the SPIO does not coincide with her feeding therapy so we had not been able to see if it had any effect in that area.  A’s PT had recommended that we look for either a swim suit or a leotard one size smaller than A’s normal size.  It would provide feedback similar to the SPIO (at a much lower price).  After much searching, I stumbled upon a 2 piece swimsuit whose top worked perfectly.  A has been wearing the top during the day since Thursday morning, and we have seen an amazing difference.

That night she sat at the table without a fuss, ate everything on her plate (peanut butter sandwich, applesauce, yogurt, and goldfish), and took the 10 “ant bites” of sweet potato in between her other bites.  You could have knocked me over with a feather by the end of the meal. I could not believe the difference.  That Thursday night was the first night we had been able to sit through a meal without A fussing, throwing something, or refusing to eat.  It was beyond amazing to realize that she managed to sit at the table for 30 minutes straight and eat without a fuss.  Yes, I did have to distract her a bit when it came to the sweet potato bites, but she didn’t shut down and refuse to eat after taking a bite.

Even more amazing was that after dinner, she sat and colored with her brother and I was hearing her use full sentences with G when she needed his help with a marker or wanted him to shift over some.  There was no screaming or hitting or crying.  I still cannot believe the difference that one little size 18 month (yes, she is that small that I had to go down 2 sizes to find the right snug fit) swim top has made for A.

I have to admit to being almost giddy and weepy at the same time when I think about the difference this has made for A.  I have, in the past 3 days, watched my amazing little girl cope with the world in a way she has never been able to in the past.  A is now able to go to a playground without clinging to me because the other children overwhelm and scare her.  She is willing to try new foods and happily sits through meals.  Best of all, she is able to tell me when she needs her “snuggie” to help her cope with the world.

I know it’s only been 3 days, and the scientific side of me is screaming that more data is needed before any conclusive determination can be made about it’s effectiveness, but the mommy side of me is screaming “SO WHAT! Look at that happy little girl!”  Yes, the mommy side is winning out right now.  I know what I see and I couldn’t be prouder of A right now and how far she has come.  She continues to amaze me everyday with how bravely she faces a world that is harsh and unforgiving to her eyes.  A world that sometimes chooses not to understand that nothing is wrong with her, she just sees and feels things differently than everyone else.  Differently, but now with one more drop of hope that she will be able to cope.  After all, to steal a line from Dinotopia, “One raindrop raises the sea.”