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.”

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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!

Of Elephants and Playrooms.

I recently read a rather interesting book about special needs children.  It’s called The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs by Denise Brodey.  It is very different from other books in that it is written, as the title suggests, by everyday parents who deal with the daily challenges of raising special needs children.  These are people who have written honestly about how their child’s diagnosis changed their lives, for better or for worse, and how they had to deal with it.

It’s not easy raising children; any parent can tell you that.  Each child presents their own unique challenges and joys. But, what do you do when your child is outside the recognized norm?  How do you cope both before and after you have answers?  Even when logically you know that there are other people on the planet facing the same or similar challenges it can still feel like you are the only one in the world dealing with this.

The collection of essays in this book are organized into sections by topic (i.e. – To Medicate or Not to Medicate, Thinking Different, Taking Care of You, Going Public) so you can pick and choose which to read or just start at the beginning and read cover to cover.  I chose to read all the essays and came out the other side feeling like I had been sitting in a room full of people who knew how I was feeling and sympathized with what I was going through.

This book is a good read for anyone raising a child with special needs and even those who aren’t.  I think it gives a good insight into how we, as parents, feel when we see our child fall apart, or have to explain to a friend/family member for the bazillionth time why little Joey or Jessica is acting a certain way, or even when strangers stare and make comments, welcome or not.  The best part is that it helps to reassure that we are not alone and for every challenge we may face with our children there will be a triumph somewhere to balance the scales.

The Potty Diaries

Yep, potty training.  That part of parenthood that is unavoidable, sometimes messy, and can even make adults want to run and hide, but that’s only if you’re one of the lucky ones.  Yes, lucky ones.  Parents not dealing with a child who seemed to have no concept of the difference between wet and dry and would spend all day in a messy diaper if I didn’t catch her and wrestle a clean diaper on her.

Our pediatrician made sure that I was thinking about starting potty training during A’s last check up.  Not in a pushy-you-should-really-start-this-now way, but more of a this-might-take-her-longer-to-grasp-than-most-kids-so-start-the-introduction-now kind of way.  While I completely understand and mostly agree with that assessment, I balked.  Why?  Did I not want to push my daughter into something before she was ready?  Did I think it would be too much of an upset to her routine to try to add potty breaks?  Yes and yes.

Let’s face it, when you have a child who is already majorly resistant to routine changes and attempt to add something major in while getting another child ready for school it’s nothing short of a recipe for disaster.  Okay, maybe not disaster, but a massive headache at least.  I figured the smartest and probably easiest thing to do was to wait until school was out and I could devote my full attention to potty training.  That was my fabulous plan.

Wait, hear that?  That would be the sound of my fabulous plan flying out the window.  Yep, A went and decided to start potty training on her own.  I blame the Huggies pull on diapers.  I bought some to try since changing A’s diaper is a bit of a challenge, especially when we are out and about.  Apparently, after wearing them a few times A decided she liked the “big kid” feel much better.  Next thing I knew, she wanted to use the potty.  Granted, it has still been a slow process.  As eager as she is to use the toilet, we still are taking it slowly.

Initially, A wanted to use the toilet as much as possible, but she was having trouble with the transition between play, potty break, and back to play so I made her slow down.  After spending a couple weeks slowly adding one more bathroom break every few days, she has finally settled into a routine and can handle the transitions.  I figure she must be really determined to do this because usually it takes her longer to acclimate to a schedule change.  Of course, the promise of Minnie Mouse underwear might have something to do with that…

So far, she has been doing really well with potty training.  We’ve had a bit of a set back this week since she has been sick, but since she is still staying dry through naps and for most of the day and using the potty when she’s feeling up to it, I’m not complaining.

This is a major triumph for A.  From everything I had heard and read, kids with SPD can be very difficult to toilet train.  So far, A has been the opposite.  Granted we still have a long road ahead, especially given her extreme dislike of public toilets (too noisy), but I think that with some patience and a good set of earplugs, we’ll make it.

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!

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