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!

 

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.”

“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.

 

 

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!

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