Life, Plot Twists, and Other Bits

I realized tonight it’s been 4 years since I last wrote anything here.  While in the grand scheme of things that may not seem like much, it feels like a lifetime right now.  Not long after my last post, my dad passed away unexpectedly turning all our lives upside down.  I found myself grieving while struggling to keep my kids going and make ends meet as a single parent.  Yes, there is more to this than I have put on paper. But sometimes, even in this era of oversharing, there are somethings that are meant to be kept private.

Where was I?  Oh, yes, leaving the unwelcome plot twist behind.

I left off with the fight to get my A into an appropriate pre-K setting.  Won that one.  She has attended the same school as her brother for 4 years now and the difference is amazing.  Being in a blended classroom with an ESE pre-K teacher made a world of difference for her.  Granted, we had a number of months with her hiding in a cubby for most of the day or screaming under a table, but we got past that before kindergarten!  Throughout pre-K and kindergarten, A continued to grow by leaps and bounds.   Then we hit 1st grade.

Hear that squealing sound?  That would be the brakes on the wheel of progress.

Despite having been through therapy for anxiety and the continued work at home, 1st grade has been a difficult year.  Children with SPD/anxiety/OCD/pick a set of letters tend to like their routine and REALLY don’t like change.  A definitely fits that category.  Between the expectation that these 6 year olds can sit still and write a multi-paragraph essay and the lack of recess most days, A has not done well.  Oh, don’t get me wrong,  academically she is doing fantastic.  Emotionally however, the kid is a wreck.

I now have the dubious distinction of being the parent of a runner.  Yep, my child was that child who runs out of the classroom.  Although, she does give fair warning before she leaves.  No, really!  She packs her bag, announces, “I can’t take this anymore.  I’m done!” and then walks/runs out of the room.  Now, before you all want to start playing criticize the teacher let me say one thing.

STOP!  A has an amazing teacher who has gone out of her way to work with us to make sure that A is successful, despite not getting support from the district and struggling in the classroom environment.  She gives A breaks when she needs them, allows her to have fidgets, and sends home her work if she shuts down and won’t do it in class.  And, before anyone says, “Well her IEP (or 504) should have all that and legally they have to follow it.”  Please know that this teacher did all this before A’s 504 was amended to include all her accommodations.  This teacher, and several of her teammates, have gone above and beyond and for that I can never thank them enough.  We (and by we I mean myself, her teachers, and a few other staff members at the school) are still struggling to get A through each day.  Some days are hard, others are easy.

Thankfully, we are seeing a light at the end of this particular tunnel.  Of course, that light just means additional letters for A’s new diagnoses.  After much paperwork, various behavioral and developmental inventories and questionnaires, A has some new letters to add to her list.  Letters like, ADHD and ASD .  (cue horror music)  Yep.  She has those letters, ASD.  (Okay, you can turn off the mental soundtrack now.)  What this means for the future, I don’t exactly know yet.  We still have a round of testing to do next month to attempt to figure out approximately where A falls on the spectrum.  All the doctor could tell us for now is that she is definitely high functioning and it will become more challenging as she gets older to keep her from getting bored in school because she is “gifted” as well.  Oh well.  All we can do is take it one step at a time.

On the upside, at least I can never say my life is boring!

I know this post was rather rambling and not at all my best writing, but thanks for sticking it out and staying with me this far.  Future posts will most likely be much easier to follow…

 

 

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!

 

March: Madness, Miracles, and Mayhem!

Actually, I probably should have just called this writer’s block.  I am currently suffering from major writer’s block and have a letter that I need to coherently compose and it’s just not working.  So I’m here instead.  Productive, right?

That’s the madness part of the month.  I’m still fighting to get A into a more appropriate setting with the school system and for whatever reason, they just don’t seem to want to listen.  Personally, I no longer care about their reasons, they are attempting to handicap my daughter and I don’t like it.  At least I still have her outside therapy with an amazing team of therapists who helped bring us this far.

And speaking of progress…A has gained 2 pounds since January!  Yes, I am beyond ecstatic about that.  We had a visit with her nutritionist last week and I was rather nervous about how it would go.  Usually, A’s weight gain does not keep pace with her height.  This time, it did.  She has gained enough to put her in the 10th -20th percentile for her BMI, plus, she grew an inch!  I am over the moon and beyond right now.

A has worked so hard and has been eating so well since mid-February I knew she had grown some (the too small pants were my first clue…) but I did not expect a 2 pound increase.  Especially since she lost some weight with the school drama.  She’s doing so well that we are off the DuoCal, down to 1 Pediasure a day (sometimes less), and, best of all, we may be done with nutritional services by mid July if she can keep it up!!

A’s diet has not changed much during this time, but her tolerance for solids has definitely increased.  We have been working with sweet potatoes in both OT and feeding therapy.  In OT she gets to play with her food and in feeding we work on eating the food.  Working with both has greatly decreased her resistance to the potatoes.

Translation:  She no longer screams when you put potatoes in front of her or ask her to touch them.  Major progress.

In the meantime, A is babbling non-stop now and is making great progress with her gross motor skills.  It’s amazing the difference that little bit of weight made for her development and it’s so exciting that she’s finally catching up.

I know she’ll still have bad days and we’ll still have struggles.  Let’s face it, she ate great today, after trying to throw half her breakfast on the floor and partially succeeding (that would be the mayhem).  Yeah, it won’t be easy, but definitely totally worth it.

Now if I could only write that letter this easily…

School Districts, IEPs, Stress, & Peanut Butter Toast

Yep, I’m at it again with my bizarre connections.  Don’t worry, it will all become clear sooner or later.

A lasted only a few weeks in her pre-k class before it became glaringly apparent that she was not in the most appropriate setting for her needs.  She was becoming so stressed out at school that she began regressing at an alarming rate.  My sweet little girl was no longer making eye contact, threw tantrums at the drop of a hat, and refused to eat.  I gave it time, but when she started refusing the Pediasure I knew I couldn’t wait around any more.

I went the normal route of speaking to the teacher, who informed me that another staff member had questioned my daughter being in the class given the nature of her needs and that she, herself, was not comfortable handling some of A’s issues.

Before I go further I do want to clarify one major point.  I do not in any way, shape, or form blame the classroom teacher.  A’s teacher is a wonderful teacher/SLP who handles her class beautifully and is very good at what she does.  Unfortunately, she was not set up or trained to handle a child like mine.  Too often teachers take the blame when, in reality, the fault lies higher up the chain of command.  Now off the soapbox and back to where we were.

A few phone calls and in person chats later I felt completely stone-walled.  For some reason the higher ups in the district seemed to feel that their “snapshot” of my child gave them more knowledge than me and therefore they were better equipped to judge what was best for my daughter.

Yes, this would be where the stress part comes in.  Trying to get these folks to understand that even though my child was not a screaming wreck at school she was having issues.  After all, she came home every day she was there with a bloody lip and fingers from picking.  A didn’t feel safe enough to fall apart in the room so instead, she would withdraw, shut down, and pick (or bite) her lip until it was bloody.  Somehow, that never got noticed, even when I pointed it out.  Finally, after two weeks of rattling cages I think I am finally beginning to get somewhere.  I think what finally got through was when I pulled her from the class and explained to the principal and assistant principal in person, and over the phone to the district, was that A was not in a safe environment and I could not sit by and wait for them to do something.  Her needs were not being met and as her mother and her best advocate I was going to make sure that someone listened and took the necessary steps to correct the situation.

Oddly enough, it seemed to work.  We are now in “negotiations” with the district and hopefully a resolution will soon follow.  For now, they want to place her as an itinerant student.  Basically, that means that I will take her to the school a couple of days each week for her speech and PT .  This will allow the district to re-open her IEP and amend it to reflect any necessary accommodations that A would require to be successful within the classroom setting.  Of course, that could take the next 3 months, but it’s a step in the right direction and people are finally listening so I’ll take it!

Through these past two weeks, I’ve been working hard to get A back to where she was before all of this.  Happily, within one week of being home full-time again, her eye contact returned and the tantrums diminished (much to her brother’s relief I might add).  She is still struggling with food but is back to drinking the Pediasure so she’s at least getting something in her.  Thankfully, an answer to the eternal question (at least for this household), “What solid, with a decent calorie count, will you eat?” popped up tonight in the form of peanut butter toast.

Yes, good old, plain and simple peanut butter toast won the what will you eat for dinner lottery.  In fact, it was such a big winner that she ate almost 2 whole pieces along with her 3oz of yogurt, Pediasure, lemonade, and a cookie.  I suppose I should have thought of it sooner since she’s eaten it before, but it had fallen out of rotation during one of her brief regressions and I forgot all about it.

Then again…given how much peanut butter toast I ate when I was pregnant maybe it shouldn’t be that much of a surprise that she does really like it.  Oh well, we’ll never know.  I’m just glad she ate a decent amount today and seems to be doing better.   At this rate I might just get to try out a few new recipes I’ve found before the summer heat gets here and really kills my urge to cook and bake.  Guess I’d better freeze some of those homemade chocolate graham crackers (http://weelicious.com/2012/04/09/chocolate-graham-crackers/)before that happens!

New Year, New Milestones, New IEP

Milestones is such a loaded word.  Although, everytime I hear it I can’t help but think of the old (talking Roman Empire old), literal milestones that marked off the distance between two (sometimes more) points along the road.  In our case, however, the milestones are figurative but the exhaustion real.

I have been wanting to sit down and write for awhile now, unfortunately falling asleep roughly 30 minutes after the kids are in bed is not conducive to writing.  We spent the first two weeks of this month getting back into school/therapy routine only to have it smashed to bits with IEP meetings and other oddball appointments.  Meltdowns were frequent and sleep was rare.  Generally not a fun time.

I think the IEP meeting was the worst.  Never attend one of those with a migrane, it only makes it worse. Two, yes 2, hours of going over reports and making decisions based on their short term observations of my child.  All to get a plan for how a classroom teacher should handle her, what accommodations she needs, and what classroom setting will be best for A.  I am so thankful that I made a point of learning as much as I could about A’s issues and the acronyms/jargon relating to it because I think they used it all in those two hours.

Speaking of acronyms and jargon, I guess I should explain an IEP.  In our school district (which needs its own IEP for a severe communication deficit), it stands for Individual Education Plan and is used for students that need to have extra services.  In our case that’s speech and physical therapy with an OT option (sounds like a McDonald’s value meal – “I’ll have an SLP and a PT please.” “Would you like OT with that?”).  It can also apply to children in a gifted program as well.  All IEPs are handled by the ESE (Exceptional Student Education) department.   And yes, they all love their acronyms.

The upshot of all of this is that it was decided that A would receive speech and physical therapy during the morning in a pre-k setting with the option for occupational therapy to be add on later if the teacher felt there was a need for it.  The downside of all this is that the half-day class they placed her in is not at the same school my son attends.  The upside is that her school is only about 5 minutes from his, making it a bit more manageable.

This was A’s first week there.  She celebrated her birthday by spending the morning at school and the afternoon at therapy.  Poor baby was completely wiped out by 4pm.  She did have enough energy to blow out her candles and eat a bit of cupcake though.

Now, before anyone gets their knickers in a knot about sending a 3yr old with her issues off to preschool and how it just doesn’t seem right, hear me out.  A is an amazing and frequently difficult little girl.  She is quite smart and creative and intensely curious when her sensory issues don’t get in her way.  While I have done my best to provide a rich home life for her (and her brother) there are some experiences that I just cannot duplicate.  This was not done on a whim.  I spent many sleepless nights wondering if it was the right thing, wondering if it was too soon to place her in a structured classroom setting, and wondering if she would be able to cope with the busyness of a classroom with ten other preschool aged children.  Sure, she can self regulate pretty well at home, but how would it work at school when she couldn’t go hide in her room or under her blanket when things got to be too much?  Would she bite another child?  Would she try to spend the day hidden underneath something?  Would she eat?  Would the teacher and aide be equipped to handle a child with A’s issues?  Al those questions, along with a hundred thousand other questions danced ceaselessly though my head day and night.  Honestly, even though I chose to go ahead and try it, as I left A’s classroom on her first day I still wasn’t sure if I had made the correct decision or not.

Thankfully, so far, school seems to be working out for A.  She likes her teacher and has fun.  She even played in the sand table and swung on the swings voluntarily (I did have to ask her teacher if she was sure that was my child we were talking about).  She looks forward to going and is a bit put out on the days she doesn’t go (program is a mornings only 4 day a week program).  A has had some spectacular meltdowns after school, but I’m hoping those will diminish as we get the hang of this routine addition.

There is one big plus to A being in school 4 mornings a week.  I get “me time” a couple of mornings a week now.  I decided to make the most of it and hit up the beautiful city park that is very close to the school.  Besides having a beautiful walking/running/biking path around the lake, it has a free outdoor gym thoughtfully provided by the city.  It’s amazing what an hour of outdoor exercise, with a few minutes of bald eagle watching thrown in (the park has a nesting pair in residence currently), can do for your stress level.

I never realized just how exhausting taking care of her was until I had that little bit of free time.  It’s not like leaving the kids with grandparents or other family for the day to go do something.  It’s knowing that A is getting the therapy and structure and interaction she needs while I am able to get the downtime I need and it’s regular.  I like knowing that no matter how bad a week might be, I will definitely be able to get at least 2 days where I have a little bit of the morning to recharge my batteries. 

Things are never black and white when it comes to these kinds of decisions.  It’s hard with neuro-typical kids but harder when there are extra issues to consider.  I’m still learning that sometimes you have to just hold your breath, cross your fingers, arms, legs, and hairs and jump.  Sometimes things will turn out fine, other times, well let’s just say other times you’re wishing for a stunt double.  Until then, I’ll be the glassy-eyed parent wearing a helmet!

Grilled Cheese and Yogurt Covered Pretzels

Sounds like that start of  bad joke or a big mess, doesn’t it?  Actually, those three things are my big surprises of the week that led me to an interesting hypothesis.  Don’t worry, I’ll explain my hypothesis in a minute.

Yes, hypothesis.  I’m a science nerd people, just go with it.

First, a quick review.  We have established that A is beyond picky when it comes to food due to her sensory problems (as G puts it), so finding new foods leads to much rejoicing in our house.  This week, during a grocery run, we happened upon someone handing out samples of yogurt covered pretzels.

Yes, it sounds a bit disgusting, but anyone who has had one knows that they are strangely addictive and actually pretty good.  They do have a weird texture though even if you are neurotypical and I didn’t think A would go for them.

SURPRISE!  She not only ate it, she gobbled it up and looked for more.  Needless to say, a box quickly found it’s way into our cart.  It may not be something I would normally buy, but at 29 calories a piece they make a great side if she struggling with eating.  Now, if I can just keep my husband out of them…

Today’s weather; cold, wet, and generally gray, always puts me in a soup sort of mood.  So, tonight became a grilled cheese and tomato soup night.  A has occasionally eaten half of a grilled cheese, but in the past few months she has repeatedly refused to eat it.

Just for the record, my grilled cheese is very basic, butter the bread, slap on a slice of cheese, and cook it in a pan.  Nothing fancy at all, but apparently A found something offensive about it.  But all that changed tonight, when she ate not only her half of a sandwich, but almost half of mine as well.

In between bites of her own sandwich, SURPRISE!  A looked around the table then into the kitchen and uttered,

“Oop!  I want own oop!”

Pause.  Blink, blink.  “Come again?”

“Want own oop pease Mommee!”

Wow.  Not only did she want her own soup, but she actually uttered a spontaneous sentence, with manners, fairly clearly.  I was shocked.  I didn’t know what to say, what to do.  I stood there, poised to set G’s bowl of soup down staring at my little daughter who never, ever wants soup wondering if she is serious.  Then it hit me, she’s actually eating and asking for food.  Needless to say, I got her a small bowl of soup.

Did she eat it?  Well, no.  Not exactly.  She did take two bites though!  I don’t think she cared for the taste too much judging by the face she made both times.  The first bite was still pretty warm and she really didn’t like it.  The second bite I cooled to room temperature and she was much more receptive to it, but once the taste hit she made the funniest face and grabbed her cup as fast as she could.

The upshot of all this it that I can clearly put grilled cheese back in the rotation but soup, especially tomato, is a no go.  All which leads me to my hypothesis.

See, I told you we get here eventually.

Because of being diagnosed as failure to thrive (FTT), I have been keeping a record of A’s diet for our visits with her nutritionist, so I have a good record of what she has been eating since about September.  Looking back through her notebook, I noticed that she really has a very bland diet for the most part.  There is basically nothing in there that has a strong flavor except for the gingerbread biscotti (if it sounds good, the link for the recipe is in my last post, Christmas in Finicky Feeding Land).

A’s reaction to the soup got me thinking about her diet and the foods we’ve tried.  She definitely has an aversion to anything that is more than a few degrees above room temperature be it food or beverage.  Actually, unless it is supposed to be cold (i.e. – yogurt, ice cream, milk, etc), she seems to prefer her food at room temperature.

Following that train led me to the thought that she also seems to have an aversion to just about anything that is seasoned or has a stronger flavor naturally, be it food or drink.  Thinking back, I realized that when she has tried things that have this “strong flavor” characteristic, she made a face much like the one we saw tonight with the soup.  And believe me, we have tried many things.  Anytime A has indicated she wants to try something, be it my tea (unless it’s caffeinated, I’m not that crazy) or something we’re eating, I let her.  But it all seems to have led to the same result, rejection.

Based on this, I believe that A falls into the “bland” category within the sensory realm.  Or, to translate, sensory seekers tend to prefer/crave foods with strong flavors, while sensory avoiders prefer the blander foods.  Apparently A is solidly in the “avoider” category.

Well, that’s my hypothesis anyhow.  Despite her occasional forays into the “seeker” realm, I believe that A is a solid “avoider”.   It will take some more observation and discussion with her therapists, but I’m very certain that this hypothesis will move on to the proven theory realm very soon.

But in the meantime, I have A’s blanket to finish up (more on that later) and a book to read so I’m off to check out from reality for a little bit of well-earned me time!

 

“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!

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