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!

 

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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.”

March: Madness, Miracles, and Mayhem!

Actually, I probably should have just called this writer’s block.  I am currently suffering from major writer’s block and have a letter that I need to coherently compose and it’s just not working.  So I’m here instead.  Productive, right?

That’s the madness part of the month.  I’m still fighting to get A into a more appropriate setting with the school system and for whatever reason, they just don’t seem to want to listen.  Personally, I no longer care about their reasons, they are attempting to handicap my daughter and I don’t like it.  At least I still have her outside therapy with an amazing team of therapists who helped bring us this far.

And speaking of progress…A has gained 2 pounds since January!  Yes, I am beyond ecstatic about that.  We had a visit with her nutritionist last week and I was rather nervous about how it would go.  Usually, A’s weight gain does not keep pace with her height.  This time, it did.  She has gained enough to put her in the 10th -20th percentile for her BMI, plus, she grew an inch!  I am over the moon and beyond right now.

A has worked so hard and has been eating so well since mid-February I knew she had grown some (the too small pants were my first clue…) but I did not expect a 2 pound increase.  Especially since she lost some weight with the school drama.  She’s doing so well that we are off the DuoCal, down to 1 Pediasure a day (sometimes less), and, best of all, we may be done with nutritional services by mid July if she can keep it up!!

A’s diet has not changed much during this time, but her tolerance for solids has definitely increased.  We have been working with sweet potatoes in both OT and feeding therapy.  In OT she gets to play with her food and in feeding we work on eating the food.  Working with both has greatly decreased her resistance to the potatoes.

Translation:  She no longer screams when you put potatoes in front of her or ask her to touch them.  Major progress.

In the meantime, A is babbling non-stop now and is making great progress with her gross motor skills.  It’s amazing the difference that little bit of weight made for her development and it’s so exciting that she’s finally catching up.

I know she’ll still have bad days and we’ll still have struggles.  Let’s face it, she ate great today, after trying to throw half her breakfast on the floor and partially succeeding (that would be the mayhem).  Yeah, it won’t be easy, but definitely totally worth it.

Now if I could only write that letter this easily…

Grilled Cheese and Yogurt Covered Pretzels

Sounds like that start of  bad joke or a big mess, doesn’t it?  Actually, those three things are my big surprises of the week that led me to an interesting hypothesis.  Don’t worry, I’ll explain my hypothesis in a minute.

Yes, hypothesis.  I’m a science nerd people, just go with it.

First, a quick review.  We have established that A is beyond picky when it comes to food due to her sensory problems (as G puts it), so finding new foods leads to much rejoicing in our house.  This week, during a grocery run, we happened upon someone handing out samples of yogurt covered pretzels.

Yes, it sounds a bit disgusting, but anyone who has had one knows that they are strangely addictive and actually pretty good.  They do have a weird texture though even if you are neurotypical and I didn’t think A would go for them.

SURPRISE!  She not only ate it, she gobbled it up and looked for more.  Needless to say, a box quickly found it’s way into our cart.  It may not be something I would normally buy, but at 29 calories a piece they make a great side if she struggling with eating.  Now, if I can just keep my husband out of them…

Today’s weather; cold, wet, and generally gray, always puts me in a soup sort of mood.  So, tonight became a grilled cheese and tomato soup night.  A has occasionally eaten half of a grilled cheese, but in the past few months she has repeatedly refused to eat it.

Just for the record, my grilled cheese is very basic, butter the bread, slap on a slice of cheese, and cook it in a pan.  Nothing fancy at all, but apparently A found something offensive about it.  But all that changed tonight, when she ate not only her half of a sandwich, but almost half of mine as well.

In between bites of her own sandwich, SURPRISE!  A looked around the table then into the kitchen and uttered,

“Oop!  I want own oop!”

Pause.  Blink, blink.  “Come again?”

“Want own oop pease Mommee!”

Wow.  Not only did she want her own soup, but she actually uttered a spontaneous sentence, with manners, fairly clearly.  I was shocked.  I didn’t know what to say, what to do.  I stood there, poised to set G’s bowl of soup down staring at my little daughter who never, ever wants soup wondering if she is serious.  Then it hit me, she’s actually eating and asking for food.  Needless to say, I got her a small bowl of soup.

Did she eat it?  Well, no.  Not exactly.  She did take two bites though!  I don’t think she cared for the taste too much judging by the face she made both times.  The first bite was still pretty warm and she really didn’t like it.  The second bite I cooled to room temperature and she was much more receptive to it, but once the taste hit she made the funniest face and grabbed her cup as fast as she could.

The upshot of all this it that I can clearly put grilled cheese back in the rotation but soup, especially tomato, is a no go.  All which leads me to my hypothesis.

See, I told you we get here eventually.

Because of being diagnosed as failure to thrive (FTT), I have been keeping a record of A’s diet for our visits with her nutritionist, so I have a good record of what she has been eating since about September.  Looking back through her notebook, I noticed that she really has a very bland diet for the most part.  There is basically nothing in there that has a strong flavor except for the gingerbread biscotti (if it sounds good, the link for the recipe is in my last post, Christmas in Finicky Feeding Land).

A’s reaction to the soup got me thinking about her diet and the foods we’ve tried.  She definitely has an aversion to anything that is more than a few degrees above room temperature be it food or beverage.  Actually, unless it is supposed to be cold (i.e. – yogurt, ice cream, milk, etc), she seems to prefer her food at room temperature.

Following that train led me to the thought that she also seems to have an aversion to just about anything that is seasoned or has a stronger flavor naturally, be it food or drink.  Thinking back, I realized that when she has tried things that have this “strong flavor” characteristic, she made a face much like the one we saw tonight with the soup.  And believe me, we have tried many things.  Anytime A has indicated she wants to try something, be it my tea (unless it’s caffeinated, I’m not that crazy) or something we’re eating, I let her.  But it all seems to have led to the same result, rejection.

Based on this, I believe that A falls into the “bland” category within the sensory realm.  Or, to translate, sensory seekers tend to prefer/crave foods with strong flavors, while sensory avoiders prefer the blander foods.  Apparently A is solidly in the “avoider” category.

Well, that’s my hypothesis anyhow.  Despite her occasional forays into the “seeker” realm, I believe that A is a solid “avoider”.   It will take some more observation and discussion with her therapists, but I’m very certain that this hypothesis will move on to the proven theory realm very soon.

But in the meantime, I have A’s blanket to finish up (more on that later) and a book to read so I’m off to check out from reality for a little bit of well-earned me time!

 

Being Thankful Everyday

Yes, I know, not a very original title.  I’m sure we’ve all heard it a “bazillion times” (to quote my son) and are tired of it.  But coming up on Thanksgiving tomorrow, I realized that I no longer reserve my “what I’m thankful for this year” reflection to one day.  Every day I find at least one thing I’m thankful for, no matter how small.  Sitting here this evening, putzing around on Facebook, I realized just how big those daily small things really are.

This year, I am beyond thankful for A’s progress so far.  We have struggled to get her weight up and managed to succeed. Yay! No G-tube needed!  We have fought to get her muscle mass built up, and are making amazing progress. Plus, all those trips to the playground and chasing after her on her tricycle are great for Mama too!  I never knew you could run a mile without leaving your own block!  Amazing.

A is talking in small sentences (2 to 3 words) more often than not, she is engaged in the world around her (most days), and is just an absolutely amazing little girl.  Yes, that is my parental bias speaking, but I’m sticking by it!

G is an amazing big brother and little boy.  I won’t be able to call him that much longer as he turns 7 next month and is quite insistent that he is a “big kid, not a little boy!”  Despite all, he is caring, patient, and kind to his sister.  He helps her when she struggles and is endlessly patient (for an almost 7 year old) when she falls apart and lashes out at him.  Now, I’m not saying they don’t fight.  Believe me they argue and antagonize each other on a daily basis, but there is not a deliberate maliciousness to it.  It’s more of a I-want-to-see-how-far-I-can-push-this sort of thing and they resolve it fairly quickly and usually without needing me to step in (thank goodness!).

Tomorrow, while we’re all enjoying our Thanksgiving PB&J, yogurt, graham crackers, and Pediasure….wait, sorry, that’s A’s menu.  While we’re all enjoying our Thanksgiving turkey, stuffing, cranberry sauce, assorted veggies, rolls, and pies, let’s take a minute to remember those out there that may have a harder time finding a small moment each day to be thankful for with their children with special needs.  Maybe the one’s whose progress can’t be measured yet, or who have just received a diagnosis and have no idea what their future holds or it they will be able to make it through each day.  Let’s remember that while some of us may be lucky enough to have coverage for therapies, be it Medicaid, Medicare, or private insurance, not everyone has that luxury.  Some families are left with no resources and no idea where to turn or what to do.  Let’s take a moment to remember those families too.  After all, we can’t always see the heartache and struggles people go through until we take a moment to look a little closer and open our hearts a little wider.

I hope this Thanksgiving Thursday, whether you live in the US and celebrate it or not, you find at least one reason to be thankful for what you do have and not what you wish you had.

“Daddy Burnd it! He Did!” or, Hilarious Things Said Today…

Ever have one of those days where your kids open their mouth and all you can do is laugh or say, “wait…WHAT??”

Well, that pretty well describes my life today.  A has undergone another language explosion and has been coming out with 2 and 3 word sentences spontaneously, which is fabulous…for the most part.  Today, though, it has been rather interesting.

My morning started with my daughter standing on her bed, butt-naked yelling, “I NAKEY BABY!”

Yep, she has grasped the concept of “naked” pretty well I’d say.  I have to admit though, when the day starts like that, it’s kind of hard to be in a bad mood. Yes, I’m still laughing over it.  What can I say, I’m easily amused!

The rest of the day was quieter (except for therapy, but that’s a whole other can of worms) until bedtime when A was looking at the burner covers on our stove as I warmed up her pillow.  Okay, that might require a bit of explaining.

A has sleeping problems.  No, let me rephrase that. She has sleeping issues.  What’s the difference you ask?  Easy.  Problems can be solved, issues make headlines.  Or, in this case, wake up the whole house on a regular basis.  I decided to try aromatherapy to see if it would help.  Okay, stop rolling your eyes and hear me out.  This stroke of genius came when A was sick a while back.  To help ease her congestion, I cut the sleeve off one of my old long sleeved shirts and filled it with rice mixed with herbal tea (from a tea bag).  When it was warmed up, it smelled really relaxing and she snuggled on it and slept with no problems.  It’s now part of our nightly ritual to warm up her “snuggie pillow” in the microwave before she goes to bed.  And, yes, it does help her settle and sleep.  Now, when she wakes up, she’ll snuggle that and usually go back to sleep on her own.

Where was I?  Oh, right, the burner covers.  As I’m holding A, she looks down at the burner covers and exclaims, “Oh dear!  Daddy burnd it!  Wook Mommy!  Daddy burnd it!”

After I managed to control my giggles, I responded that I knew the cover was burned and that yes, Daddy had burned it accidentally.  A took this very seriously and continued to exclaim, “Daddy burnd it!  He di Mommy!  He ditit!”

Yes, she was quite concerned that I had to know that Daddy burned the cover.  She continued to exclaim over it all the way to bed (which thankfully is a short distance), pausing only long enough to say good night to her big brother.

With A in bed I was sadly under the delusion that my, “Wait, what?” moments were done for the day.

Her big brother seemed to feel that it was his duty to make my evening a bit more interesting.  G is almost seven, incredibly curious, and very bright.  No, that’s not my parental bias talking.  I’m merely repeating what his teachers have told me.  Oh, and he’s all boy.  I mean that in the best possible way.  Most of the time.

Moving on, while I checked on his progress in the shower, he for some reason decided it was time to ask Mommy some “facts of life” questions.  Don’t get me wrong, I expect these questions and have no problem with them, except when I’m when I’m blind-sided.  Like tonight.  He wanted more details than I was expecting.  Apparently the children’s “Where Babies Come From” book he found at the library was to general for him.

Yikes.

On the upside, since he’s almost 7, he informed me that he’s never going to get near a girl anyhow and he’ll live all by himself, thank you very much.  Girls are gross.  Except for mommy and A, and YaYa (his aunt)…and Auntie L…and Aunt K…and Aunt M and K…but Omi doesn’t count because she’s Omi.  Same for his Grandma.   Yeah, that’s everyone, he thinks.

I love my son.  Sometimes it’s just nice to have a “normal” moment at the end of the day.

Now to put my feet up, level some class books for my momma, and watch Big Bang Theory.   Yeah, life is good.

Oh Yes, We Call Her the Streak!

She’s just in the mood to run in the nude!  Guess you could call it unique!

Okay, enough with the Ray Stevens reference for now.  (For those of you not familiar with Ray Stevens or The Streak this will help you understand the humor.  http://www.youtube.com/watch?v=XtzoUu7w-YM)

It’s been a “clothing optional” week for A.  Yep, she has decided that clothing is offensive to her tactile system.  On the upside, she has not yet stripped in public.  She has tried a couple of times, but I have so far managed to successfully distract her.  At home though, she has so problem stripping down and running out yelling, “NO UNNIES!”

Okay, you can stop giggling now.

In addition to this new development, she has had a noticeable increase in expressive language.  It’s been amazing to hear her actually use two word “sentences” when she wants something or when she’s trying to tell me something.  Right now, her favorite phrases are “me too” and “no unnies!”

Yes, my daughter is out of pull ups except at night.  She woke up a week and a half ago and loudly proclaimed that she did not want a pull up, she wanted “Unnies!  Ninnie Unnies!”  So we, gave regular undies a try and so far, so good.  She has decided that she wants to be a big girl and I am quite okay with that.  It has definitely made things easier in some respects, but public bathrooms are still sometimes tricky.  That’s what earphones are for though!    So, while potty training is mostly done, we still have to work out some of the kinks, especially on her sensitive days.

On an even happier note, with the return of the school year, A will be resuming occupational therapy and with that listening therapy.

Wait, what?  What is listening therapy?

That’s about the reaction I had initially. I’m still not sure I can explain it very well, so here’s a link for the company that makes the headphones used for the theraputic listening program,  http://www.vitallinks.net/pages/About-Therapeutic-Listening.php
I think they can explain it much better than I can at this point.   I still have a lot to learn.  I am hoping, since everything I have heard is positive, that it will help A.

In the meantime, we will just have to continue to work with our little Streak  in all her uniqueness and continue to be patient!