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…

 

 

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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!

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.”

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…

An Open Letter to School District Administration Personnel

Dear School District Administration Personnel,

Let me start this by stating that I understand that you have a difficult job.  There are few of you and many students with many different issues.  I understand there are certain rules in place to help things flow smoothly and that, at times, you follow as though they are written in stone.  But even stone must change with time.

I recently went through the IEP process with my daughter who is 3.  She lives with Sensory Integration Dysfunction (or disorder, if you prefer).  Diagnosed at 15 months and in therapy since she was 13 months old, she has come a long way but still has a long way to go.

During the course of evaluations and subsequent reports, the evaluators did their best to put together a “snapshot” of my child and her needs.  Regrettably, it fell short.  When we came to the IEP meeting, all the districts specialists who had been in contact with my daughter were there and were prepared, as I was, to put together an education plan to help my daughter succeed.    Unfortunately, I felt that they chose to ignore or brush aside their most valuable asset when it came to my child’s needs.  Me.

Yes, I know my child better than anyone.  I have spent countless hours working with her at home and in therapy.  I am constantly inventing new ways to work with her and to help her learn to cope with the world around her.  I have held her as she cried for no apparent reason and cheered her many tries and accomplishments as she has grown.  I have guided her through her ups and downs and gave her the words and tools she needed to learn, cope, and grow.

I am her mother, but I am also her best and only advocate.  I will not sit meekly by and accept that someone else, based on a snapshot report, can accurately know my child.  Even her therapists that have been working with her for almost 2 years now ask for and listen to my input.

I will not be brushed aside in favor of one size fits all rules and guidelines.  We are all different, some more so than others.  My daughter may be speech impaired, but it is because of motor planning difficulties which are a result of the sensory dysfunction which impacts her interactions with the rest of the world around her, including her peers.  It is time to look at the whole child, not just the parts.

My daughter has a right to a free and appropriate public education and I will not let you handicap her by ignoring her needs and rights under IDEA.

Yes, I am angry.  Yes, I feel stone-walled, ignored, and brushed aside.  But I will not allow it to continue.  I know I am not the only one out there who feels marginalized by the system.  Maybe no one else has, but I am and I will continue to stand up and make my voice heard.

Sincerely,

An Active, Involved, and Concerned Parent

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!

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