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!

 

Advertisements

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.

100_5800

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.

.100_5801

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!).

100_5804100_5796

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!

100_5812

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!

100_5813

“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.

100_5960

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!

 

 

 

“I’m on Strike!”

Or, “don’t give it to me unless I can eat it through a straw!”

Yes, it’s one of those weeks.  A just doesn’t want to eat unless she can slurp it through a straw.  What’s that?  Yep, it’s the sound of my blender crying.  I don’t think mine will make it to the spring; good thing they go on sale this time of year!

Our family had a very quiet Thanksgiving.  Like most people I talked to, half my household was sick (G and myself being the sick half) and A was just completely out of sorts.  Her brother was not at school when he should be, her therapy schedule was, by her standards, completely upside down and inside out, and nobody was where they were supposed to be when they were supposed to be!  According to her anyhow.

Think my kid likes her routine?

Yes, that was rhetorical.  Moving on.

We have since recovered from the traumatic schedule change and moved on to a semi-traumatic venue change for her weekly therapy.

As of Thanksgiving, the office I had been taking A to for her speech and physical therapy closed.  Thankfully, it was a satellite office so we didn’t have to find all new therapists and the main campus for the hospital is still fairly close to us.  Let’s face it having to drive 10-12 minutes instead of 8-10 minutes is not that big of a deal, especially when it means access to a brand new facility.  Yes, I like that part a lot.

Unfortunately, A didn’t see things that way and was rather bent out of shape at seeing familiar faces where they didn’t belong.   Lucky for me though, it only took her about a week to adjust to having her speech and PT at the main campus instead of just feeding therapy.  OT is supposed to be in there too, but we’re on a waiting list that includes at least half the state I think.  Okay, so maybe not that many people, but it does feel like that some days.

Where was I going with this?

Oh, right, food strike.

Sorry.  This is what exhaustion does to you.  No, really.  It’s actually a miracle I’m still awake right now.  Normally once the kids are in bed I’m falling asleep by 7:45 or 8.  Making it to 8:15 and not dozing is 100% miracle.  Of course, the tornado warning that expired about 10 minutes ago might have something to do with it too.

Back to our story!

So, because of all the upheaval in her little life (and the phase of the moon, height of the tide, and direction of the wind at 3:28am on Saturday), A is not eating again.

Actually, it has more to do with the fact that she is super sensitive right now.  More so than usual.  Her normally hyperactive gag reflex is in over drive right now and even her favorite solids (Grahamfuls, hamburger bun with peanut butter or plain, yogurt) are making her choke right now.

I never thought I’d say this, but thank God for Pediasure.

Since Saturday I have been walking a fine line between making all her meals liquid (giving up for now) and continuing to try the solids.  So far, my logical side has prevailed (scary) and I am still offering her solids at each meal.  Mostly she refuses, but sometimes she gets a bite or two down.  If she starts gagging after that I don’t push it, but I at least want her to keep trying. 

It is not easy.  In fact, you see that point farthest from easy?  That’s where we are at the moment.

We have had some triumphs.  A was really cooperative in feeding therapy today and even managed to eat 1/6 of  of her hamburger bun at dinner along with 1/4 of a Grahamful before she started gagging when the food hit her tongue.

And for those who may ask, “Isn’t that just a behavior thing?”  No, in this case it’s not.  A genuinely hits a point when she cannot tolerate solid food on her tongue.  She tries to take bites, or even nibbles, but she just physically cannot do it and I won’t push her.

Hopefully, she’ll come out of this soon.  If not, it will just force me to get creative and there is nothing wrong with that.   In the mean time, we’ll just do lots of creative art/therapy type projects that result in inexpensive and nifty little Christmas gifts for people.  For how that works out, you’ll just have to stay tuned!

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.

 

 

Hi! Remember Me?

It’s okay if you don’t, most days I’m lucky to remember my own name!  It’s been a while since my last post.

How long?  Well, ah, let’s see…

Look, I can barely remember what I ate for breakfast so let’s just leave it at it’s been a while, okay?

My lack of presence is sadly due to my not-so-nice-friend exhaustion.  I have all sorts of great things I’ve wanted to put down on paper (or computer screen if you want to get technical) but by the time I’ve gotten my kiddos off to bed, I’m right behind them.  Don’t laugh.  You try sitting down to enjoy a movie with your husband only to see the DVD menu followed by the end credits.  He’s seen lots of great movies. I, on the other hand, have seen lots of production credits.

The good news is that no animals were harmed in the making of any film.

Moving on…

What has kept me away?  Why so exhausted?

Hmm…where to start…Ah, yes!  Let’s start at the beginning!

Since August, I have battled my local school district to keep G in the same school he has been in for the past 3 years (and won), rearranged A’s therapy schedule at least 3 times (not by choice), and added all kinds of new tasks to the chore of feeding her (bring on the supplements).  All of this combined has sucked the energy out of me more effectively than a supermassive black hole.

Yes, feeding is a chore.  Since we last visited, A’s eating preferences have gone downhill and taken her weight with it.  We have finally been able to start feeding therapy, but it has been very slow going.  After a month, A is starting to come around and tolerate her therapist working with her directly instead of through me.  Insert sigh of relief here.  Unfortunately, trying to keep her in a seat she will tolerate, distract her enough that she will not run off, and get her to eat at the same time is something of a Herculean task (and I doubt whether Hercules himself could have managed it).

I am in the process of attempting to locate a specific type of booster seat that I know A will tolerate (she uses it in speech and feeding therapy) and it has a belt to keep her in place.  Thankfully, it is actually quite cheap, unfortunately, everyone with in a 50 mile radius of me is out of stock.  Why don’t I just order it online?  Well, I have a hard time justifying paying a shipping cost that is almost half the price of the item.  To that end, I will be going to the store to have them order it so I don’t have to pay the shipping!  I am hoping that if I have the same booster she uses in therapy she might eat a bit better.  Of course, that doesn’t help the root problem, her sensory issues.

Her nutritionist has become very concerned with A’s lack of weight gain.  Even with 2 Pediasure 1.5s a day, A actually lost weight last month.  She grew half an inch, but her weight did not keep up.  I know that may not seem like a big deal, but it put A below the third percentile for both weight and BMI (body-mass index) for her age.  While her increase in height means she is getting calories, the drop in weight means it was not enough calories to maintain her system.  If it continues, her metabolism will slow to the point where she will not feel hungry, will not eat, and her system will start to shut down.  Her nutritionist added Duo-Cal in addition to whole milk and her Pediasure 1.5, but if she does not seem to be responding to this, we are looking at the possibility of a G-tube (feeding tube).

This is not an easy thing to hear.  Bad news about your child’s health is never easy, but this hurt.  It is like a physical, knock the wind out of you blow.  You sit there thinking, “My God. What else can I do?  What haven’t I done?  What did I do wrong? What am I doing wrong?”

The answer to those last two questions in our case is, nothing.  We have done and are doing everything we can to help A.  We have her in feeding therapy to address her textural aversions with food and her problems chewing and swallowing harder, non-dissolvable  food items (i.e. – peanuts and the like).  We have her in OT to address her sensory issues.  I work with her at home, constantly.  Once a month we see a nutritionist to monitor her BMI and growth and to make sure we explore every available avenue to increase her caloric intake in a safe and healthy manner.

Everyone A sees for her SPD has reassured me that we are doing all the right things and that this isn’t as bad as it seems right now.  I am trying, somewhat unsuccessfully, to see the forest instead of just the one tree, but it’s not working.  All I can think, when I slow down  long enough, is that they may have to put a tube in her which means surgery.  My 2 year old little girl who can barely tolerate her clothing and sounds most days is going to have to go through this and it’s not fair! (And yes, I did just mentally stomp my foot like a small child.)

I know that everyday there are people in the world who receive worse news than this, and that I’m lucky that A is as healthy as she is right now.  Logically, I am aware of these facts.  However, my ancestry is heavily littered with Scottish and Irish, not exactly a group known for being cool, logical, or level-headed (especially not all at once).  Now, just to clarify, I don’t fly off the handle in a hysterical fit with bad news.  I just have a hard time reconciling my more logical noggin with my rather stronger emotional heart. Especially when I haven’t been able to fully wrap my head around the situation.

I am hoping and praying for the best, but I have prepared myself for otherwise.  In the meantime, I am doing my best to take it one day at a time, or one hour at a time, depending on the day.

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!

Previous Older Entries