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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Christmas In Finicky Feeding Land!

Yes, I know.  Technically, Christmas day was 5 days ago, but I’m one of those who likes to celebrate the full 12 days of Christmas.  And my kids don’t mind too much either.   I think it’s because of the music and the food.  After all, this is a season of amazingly good (and rich) food, and there is nothing easier to get a kid to eat than a cookie they helped to make.  Especially when you’re dancing to music while you bake.

Yes, it’s true, I let A help me with our Christmas cookies this year.  Crazy? Probably.  Worth it? Definitely.

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She touched it!

Let’s face it, you don’t get much more sensory intensive than mixing, rolling, and sprinkling cookie dough.  Okay, so she didn’t exactly help with the rolling part, but she did touch the dough and was quite proud of herself for doing so.

She helped squash them with the glass (great for the “heavy work” end of therapy).  Yes, I kept a hand on the cup.  Real glass and tile floors don’t play well together.

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Then it was time for sprinkles.  Who doesn’t love sprinkles?  Great for fine motor skills (hello pincer grasp!) and motor control (on the cookies not the baking sheet if you please!).

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Who knew baking could be so therapeutic?

Of course, she had to find something to amuse herself  for the 12 minutes it took for the cookies to bake and the 15 minutes it took for them to cool.  Thank the Lord for puzzles!

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And, yes, she does those on her own.  I wish I was making that up but my almost 3 year old is rather bright (not parental bias people, I have the assessments to prove it!).

After all that hard work, it’s time for taste testing!  With a nice cup of cold milk of course!

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“Yummy, yummy in tummy!”

Actually, she didn’t eat that cookie.  A decided she wanted gingerbread biscotti instead so she fed her cookie to me.   No complaints here!

What’s that?  She ate biscotti?  My super picky, super sensitive child ate hard, crunchy biscotti?

Yes, yes she did.  Only it wasn’t that hard and crunchy.  And there was white chocolate involved.

It’s a recipe that I found in a Family Fun magazine for kid-friendly, easy to make holiday treats.  And yes, it is actually very easy.  Here’s the link for the recipe: http://www.parents.com/recipe/gingerbread-biscotti/

While traditional Christmas dinner is definitely not A’s cup of tea, I have found ways around that thanks to the variety of seasonal foods that I love to make.  Granted, her Christmas dinner consisted of a GoGo Squeeze (I don’t think I would survive without those), 2 herb rolls (homemade, time consuming, but very yummy), PediaSure, and egg nog.

Yes, egg nog.  We have discovered that A absolutely loves egg nog.  How much?  Well, she guzzles it; and I mean that in the truest sense of the word.  She can down 4oz of the stuff faster than anything (sorry, the analogy portion of my brain has officially shut down for the night).

Her favorite thing though, is “Crumbly Cake.”  It’s actually called Railway Crumb Cake, but crumbly cake was easier for G to say when he was little, so the name stuck.  It is one of the easiest things to make (I’ve been making it since I was about 9 years old) and it is so delicious.  Another bonus is that it makes the house smell wonderful.  Both my kids love helping, both with the making and with the eating.  This has become my family’s traditional Christmas morning breakfast (we use it on Thanksgiving also) just because it is so easy.  It takes about 30-35minutes to bake so you do have to plan ahead it you want it freshly made in the morning, but it is worth it.  I haven’t seen this recipe anywhere since I read it in a Pockets magazine when I was 9 (yes, it was a while ago); so here it is if anyone fancies giving it a go.

2 cups flour (all-purpose)

1 cup sugar

3/4 cup butter

1 teaspoon baking soda

1 teaspoon ground cinnamon

1/4 teaspoon ground cloves

1/4 teaspoon nutmeg

1 egg

1 cup buttermilk

Combine the flour, sugar, and butter in a large bowl until mixture resembles crumbs.  Set aside 1 cup of this mixture for topping.  To the remainder of the crumbs, add the baking soda, cinnamon, cloves, and nutmeg.  Mix well.  Make a well in the center and add the egg and buttermilk.  Stir gently until just combined.  Pour in to a greased 9.5in pie plate and top the 1 cup of crumbs that was set aside at the start.  Bake at 350F for 30-35 minutes or until a knife inserted in the center comes out clean.  Let cool, then slice and serve.  Serves 8.

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This was ours about 15 minutes after it came out of the oven Christmas morning.  The kids wanted this before they opened their presents.  I’d say it’s because they like it so much (which they do), but I think the real reason is they wanted to be able to play uninterrupted after opening presents.

Suffice it to say, it’s always a big hit and A has actually been eating because of it.  I would make it year round, but for me it really is a Thanksgiving/Christmas time only food.  Guess I’ll just have to hunt down some regular crumb or coffee cake type recipes for the rest of the year!

In the meantime, happy eating and even happier Christmas!

 

 

 

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.

Celtic Thunder, Separation Anxiety, and Pasta

Yes, believe it or not, they are all connected.  In a weird, roundabout, only-in-my-universe-could-this-happen kind of way.

Last Saturday (November 3) I had the pleasure of seeing Celtic Thunder in concert.  Now, this is the sort of show you could bring children to, but not if that child happens to be A.  The first time I saw this group perform, G came with us.  He was almost 5 and these guys were and still are his idols.

Excuse me for a moment while I wipe away a tear of pride…

Okay, moving on.  Bringing him was a no brainer.  G has always been a bright, well-behaved, sweet kid who has endless patience (thank God for that), so we knew he would be able to make it through the show.  Actually, he had so much fun dancing to the music that the people around us paid more attention to him at times than the guys on the stage (and if you know about Celtic Thunder, that’s saying something!).

But I digress.  This go around, it was decided that this would be a grown-ups only outing.  Myself (obviously), my husband, and two of our best friends who are basically family.  We went to the matinee so that I wouldn’t have to rush A’s bedtime routine, which is always a catastrophic failure.  My parents (who I cannot thank enough) agreed to watch the kiddos for the day so we could have lunch then go to the show.  Sounds like a win-win right?

Well…it would have been except for one minor detail.   A was having a horrible day and I had to implement what I call the “5 foot radius rule.”  Basically, it means don’t get too close to A or she might hit, bite, punch, or otherwise attempt to injure you.  I know, it sounds horrible, but on the days when she can’t cope she lashes out.  Let’s face it, she is a communication-challenged 2 year old, what other reaction could you expect?

Still, we got through the morning, she seemed to settle so off to Omi and Poppy’s house we went.  She settled just fine, so off we went to enjoy our show.  And yes, we enjoyed it immensely and even had the pleasure of meeting several of the guys along with the creator/producer of Celtic Thunder afterward.  All in all, a wonderful “Mommy’s Day Off.”

Over the next couple of days, I noticed A was quite reluctant to let me out of her sight and even more reluctant to eat.  Wait, I may have understated that a wee bit.  It was more of a cry-hysterically-because-Mommy-left-the-room and refuse-to-eat-solids-especially-around-anyone-but-Mommy sort of thing.

On top of this, we throw feeding therapy into the mix.  Now, this is not a new thing for A.  She has been in feeding therapy for about 2 months  now and this is our second go with it (her first was at 13 months).  No surprises here.  We are starting to work with A on tolerating foods she has textural aversions to (sounds like fun doesn’t it?) and I thought pasta would be a good start.  Let’s face it, it’s cheap, higher calorie, and it’s really easy to hide veggies in the sauce.  What could be better?

Apparently, anything but pasta.  Let’s just say it’s not going so well.  I thought we were making some progress since she seemed to be tolerating utensil contact with it during therapy.  Too bad, no matter what I tried, it didn’t carry over to home meal times.  Since Wednesday, I have spent more time cleaning pasta off the table, chair, floor, sliding doors, cabinet, and anything else that was within about 3 feet of A’s chair.  And it’s not like she had a plateful to toss around!  We’re talking about 4 to 6 pieces of macaroni!  That’s talent.  On the upside, my dining room floor (thank goodness it’s a small area) was really clean by Saturday night!

How am I handling all this?  Well, after I stopped banging my head against the wall, I realized that A will adjust back and she just needs time and space.  LOTS of space.  She also needed some “Mommy time.”  So I took her to the Clearwater Marine Aquarium (I love having freebies to amazing places!) since marine life relaxes her.  Plus, she loves the movie Dolphin Tale so any chance to see Winter is “awhum” (“awesome” to the rest of us) in her book.

The upshot of all this is that I have learned some important lessons.  The main one being do not, under any circumstances, introduce (or attempt to introduce) any form of pasta to A when she is struggling with bad days.  The secondary lesson is that “Mommy’s Day Off” will trigger separation anxiety in A that will leave me absolutely exhausted afterwards but it’s absolutely worth it!  After all, no matter how hard it is to remember this sometimes, I have to remember to take care of myself too.

 

 

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!

Happiness is….

So, honestly, how many of you started singing the song from You’re a Good Man, Charlie Brown?

I had to ask since I’ve been singing it off and on all day.  It’s a cute song and good when you need a quick reminder that small things can bring the most happiness.  But that’s not really where I was going with this particular post.

We have been following the Olympics fairly regularly, except my husband that is.  It’s been a great learning experience in sportsmanship for G and A has been attempting to increase her vocabulary while watching with us.  It has been absolutely wonderful and amazing to hear sounds that she has struggled to connect come together.  Even though she doesn’t fully understand why Mommy is so happy, she is excited because Mommy understood what she was trying to communicate.

The big bonus to this upswing in communication is that potty training has started moving along quite nicely.  She is able to spend most of the day, when we are home, in cloth training pants instead of pull-ups, which my wallet greatly appreciates.  When we are out, A has started letting me know when she needs to go and that is a major step forward from where we were just a few months ago.

We’re still struggling with the eating issues, but I’m still hoping that once we get into therapy things will start heading back in the manageable direction.  Until then, I have added in smoothies as a regular part of A’s diet.  While it may not seem like much, one smoothie snack a day, it does seem to be having a positive effect.  In the two weeks since starting this “smoothie experiment” we have noticed an increase in A’s endurance and she feels heavier to me.  I’m hoping this means she has actually gained some weight and will now be able to build and keep some muscle on her tiny little frame.  I think that has been the hardest part of all of this.  Knowing that A was struggling to build up her muscles (especially in her legs) but that her body was not able to maintain it because of the lack of calories coming in.

Her nutritionist had recommended milkshakes (homemade) but I really wanted something a bit healthier.  Hence the smoothies.  Thankfully they are not hard to make.  The hard part though is finding yogurt that isn’t fat free.  So far, our best bets have been the Cabot Greek style yogurt and Liberte Yogurt (Mediterranean style).  Both are higher calorie and thicker than regular yogurt so they make great smoothies.  As far as add ins, we had been staying fairly basic: bananas, strawberries, blueberries, and I just added peaches this week.  All of these went over well so I decided to get a little adventurous and try something new today.  I added Cheerios.

Okay, stop laughing.

No, really.  You can stop now.

This is a big deal when it comes to A.   For all I knew, I would be cleaning smoothie off various surfaces in the kitchen about two seconds after handing her the cup.  She has a tendency to toss food she doesn’t like, which is something we are still working on.

Thankfully, she and G both loved it.  So the banana, peach, blueberry, Cheerio smoothie is officially in the smoothie rotation.  In fact, it went over so well, that I’m thinking about being even more daring and trying a new fruit.

So, all in all it’s been a pretty good week.  We survived with minimal tantrums, increased success with potty training, increased communication, and increased caloric intake thanks to the daily smoothie break.

Yeah, the Peanuts gang got it right; “For happiness is anyone and anything at all that’s loved by you.”

Indy Cars and Spring Break Lessons…

Sounds like an interesting time, doesn’t it?  Sadly, a lack of internet and Spring Break, but mostly the lack of internet,  got in the way of my posting.  But, I’m Back!  Thank you!  Thank you!  I’ll be here all week and then some!

Okay, now that we have that out of the way…

The past couple of weeks have been a learning experience for all of us.  With my son’s Spring Break falling the week before Easter I decided that it would be a good time to find out just how much stimulation A could stand before she went into meltdown mode.  Sound like fun?  Well, sarcasm aside, it actually was a lot of fun.

We started the “stimulation overload test” (not very original, I know – I’ll work on it for round 2) with a day at the IZOD Indy Grand Prix.  It’s something we take G (our son) to every year (thank you Dad for the tickets!) and I decided to take A this year.  Amazingly, it went very well.  A loved seeing the Indy cars, waved to a few drivers, and got to spend time with some family and friends.  Granted, she barely ate while we were there, but I figure that eating four (yes, 4) yogurts and drinking a Pediasure over the course of the 6 hours we were there is a marked improvement over past excursions.  The best part of all?  Both kids were so tired by the time we got home that bed time was a breeze!

We followed this adventure up with visits with grandparents (both sets), a trip to Busch Gardens, and swimming at a friend’s house.  Things were going pretty well at this point.  She hadn’t had a melt down, was eating her usual foods pretty well and even ventured to try out a french fry.  She didn’t make it past the first bite, but she tried it so I was happy (G wasn’t, but since she had stolen one of his fries can you blame him?).  Then we hit the Spring Break halfway point, and boy, did she ever hit it.  To say she had a melt down would be grossly understating things (and gross pretty much described her place after most meals…after she upended the dish of food she refused to eat).

After about 3 days of doing….wait, what did we do?  Oh right, NOTHING!  I really could not expose the public to my child at this point.  It would have been considered cruel and unusual punishment, for the rest of the world, had I taken her out somewhere.  The poor baby could barely tolerate her brother saying good morning to her without covering her ears and crying.  At least G understands what’s going on and doesn’t take it too personally when A does that, otherwise she would give him a complex with the number of times she has cried when he looks at her or talks to her.  Although, the one thing she did seem to tolerate well was music.  Specifically, Celtic Thunder.  Anything else seemed to set her off, but Celtic Thunder has a calming effect on her, except for the times when she was dancing to their music.  It worked like mini therapy for her little neurons.

For those who haven’t heard of Celtic Thunder, they are a group of 5 guys from Ireland (and Scotland) who perform a mix of traditional Irish/Celtic music and some more contemporary pieces as well.  They are fun to listen to and watch (if you want more go to www.celticthunder.ie).  No, I’m not affiliated with them in any way, my kids and I just happen to like their music, and the affect it has on my sanity.  Moving on…

Suffice it to say, we made it through the rest of the week (barely) and by the end of the weekend A was back to her old self.  I don’t know if the rest of us have recovered yet or not…Stay tuned for further adventures!