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!

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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!