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.

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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!

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.”

SUCCESS! And setbacks.

Yep, we’ve had a success.  Well, actually it’s more like two but rolling them into one makes things easier.  What success am I rambling on about you ask?  A licked a chicken nugget and took two bites of a carrot stick.  But, not only did she take those two bites, she chewed and swallowed them!  Yes, that’s a big deal around here so stop rolling your eyes.

A loves carrots, but she has the hardest time swallowing them.  When chewing, she hits a point where it’s almost like she can’t feel the food in her mouth well enough to tell where it is so she can swallow.  She has been struggling with this for what feels like forever.  Anytime we have carrots, which is quite frequently, she tries one but usually after one bite, I have to clear out her mouth with my finger because she is gagging.  I cannot begin to tell you how ecstatic I am that she managed to swallow two bites.   Granted, she didn’t eat any more after that, but I really didn’t care.  She had two bites! She had two bites!

Happily she followed that success up with licking a chicken nugget dipped in honey.  Normally, it wouldn’t seem like a good thing, a kid licking their food, but it is such a major, major step forward for A that I’m still, three weeks later, over the moon about it.

When I started this blog, I had intended to post something every week.  Unfortunately, I did not reckon on the force that is A.  All the good intentions in the universe mean nothing to a child, special needs or not.  When they decide not to sleep or not to eat or throw hour plus long fits, there isn’t much you can do except hang on.

Regrettably, we recently and inadvertently created a situation that caused A to have a major backslide.   She had been doing so well using the potty, sleeping, eating, everything and within a week it was as if someone took a wet rag to the slate and totally obliterated everything.  Since we rectified things and “undid” the situation, A has slowly been returning to “normal.”  I just wish that was a quieter process.  Our whole household, small as it is, has been enduring endless tantrums and fits.

Okay, maybe not endless, but it sure feels like that way.

It’s hard to be positive and think happy thoughts when you feel like you are stuck in a dark room stumbling around to find the way out and the parameters keep changing.  But, in the words of Professor Dumbledore, “Happiness can be found even in the darkest of times if one only remembers to turn on the light.”

Today’s Forecast…

Sunny with a chance of sudden squalls.  Yep, that about covers life for the past month.  Lots of highs and lows, tears, head-banging (me, not her), and frustration followed by elation.

We have had a great deal of success with potty training.  A knows what the potty is for and about 50% of the time she makes it there before she has an accident.  Some of the accidents are more a result of lack of understanding what she’s trying to tell me than her being distracted by play.  To that end we have been working on some form of system to clear up the lines of communication, but it’s not that easy with a  speech delayed child who has motor planning difficulties.  Fingers are crossed though that something will workout if we try enough.

Unfortunately, A spent most of April battling respiratory infections and asthma issues and lost some weight as a result.  Her hard won pound she had gained over the course of 3 months fell off within 1 week of being able to eat because of her cough and sore throat.  Thankfully, with the help of a medication adjustment to control her asthma and generous amounts of Pediasure she has gained back about half of what she lost.

The hardest part of all this is trying to find higher calorie foods that are not only nutritious but that A will eat.  It would be very easy to fall into the trap of allowing her to eat higher calorie foods that don’t have much of a nutritional value to help her gain weight, just because it’s easier.

Yes, I said it. Sometimes those of us who deal with kids that have these issues contemplate and/or do something that we know may not be the best thing because it is easier.  Sometimes it’s just easier to give them the ice cream than try to introduce them to something that might be a better choice.  Especially after a very long, frustrating, and loud day.  Do I feel like I have done my daughter a disservice by not trying for the umpteenth time to find a way that she will accept avocados or pasta or veggies and dip?  Yes, to a certain extent I do.  But, more importantly, I know that sometimes you have to loose a battle in order to win the war.

I am fighting against something that doesn’t play by any set of rules that we know.  It picks, seemingly randomly, who it affects in families and to what extent it affects them.  No two cases are alike, even within the same family.  I know because my husband has lived with his sensory issues and they are different from what A faces on a daily basis.  There are days when I feel like banging my head against the wall until it hurts would be an improvement on how the day is going.  Other times, A cruises through the day like a “neuro-typical” child and I can’t believe she’s the same child who was screaming over being touched the day before.  Either way, she’s my daughter and I plan on doing everything I can to help her learn to cope with the world around her.

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.