Nothing Good Ever Came Easy

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I’ve already covered a lot of reasons why this place is incredible.  No doubt, The Morris Center is in a category of its own.  But this is HARD.  Like, really hard.  Take a minute to put yourselves in our shoes.  Imagine your kid has dyslexia (and some of you don’t have to imagine it because you already live it).  Every day at school is a struggle.  Every day your child has to work harder than the majority of his/her peers.  He doesn’t love school and has been counting down the days to summer since the second week of the school year.  Third grade is almost over and she can already taste the first sign of summer….the tiger’s blood sno-cone from the portable stand by the red light near your home.  The boat is out of storage and he can’t wait to wakeboard and do donuts on the tube in the middle of the lake.  This was us in April…. anticipating sweet summertime.

Suddenly, things change.  Due to unique circumstances, our plan to be at The Morris Center in November was expedited to NOW!  We literally had 2 weeks to pack up and leave.  In that rush to get things done, we were met with strong resistance from our kids. Lots of pleading, lots of tears.  A sad little girl saying “please don’t make me go now.  You’re ruining my life. I’ll miss sleepovers and all the fun camps with my friends.”  A clever adolescent using his math skills and new, not so nice addition to my name:  “Hello, worst mother ever….So let’s do the math,  From the start of 6th grade to the end of 7th grade, how many days of school will I have without a summer break?”  To put it lightly, they were MAD!  It’s a terrible feeling as a parent to know your kids think you are punishing them when you’re actually trying to save them.  But alas, we persisted, reminding ourselves this was the best thing for them, and if we can just get there, they will understand.

We are now in week 6 of the program.  The fatigue is setting in.  They are no longer pacified by the promise of “fun weekends doing Florida things we can’t do back home.” In fact, they would choose to relax and chill over boogie-boarding the waves of the ocean.  But we still plan activities because we know idle time leads to negativity.  Too much time has them imagining all the “fun” their friends are having back home while they are in “school” all day (the grass looks greener than it actually is since the coronavirus has affected everyone’s summer plans…but you can’t convince them otherwise).  They love keeping up with friends, but each baseball tournament, camp re-cap, lake day picture reminds them of what they “would be” doing if they were home.  They haven’t seen their dad in 58 days.  Being homesick is their reality.

And let’s talk about the work they are doing at The Morris Center.  These kids are working HARD.  This isn’t like regular school at all.  This is six,  1-hour sessions per day of one-on-one instruction.  There is no lag time, no mindless drawing in their notebooks during instruction, no zoning out while the teacher works with other students. No recess with friends on a playground or lunch dance parties in the cafeteria.  There’s no distractions to slow the pace of learning.  This is intense instruction with 10 minute breaks in-between.  These kids are doing a week’s worth of the online NOW program every single day!  Each week is a month’s worth of sessions.  Their afternoons are structured and routine:  come back to the tiny house (aka, our apartment), chill for 30-45 minutes with a snack and some youtube, Minecraft or Fortnite; bike riding or swimming, dinner, downtime, then bedtime.  As parents, we have observations and meetings throughout the week to keep up with their progress.  We are trying to offer well-balanced, nutritious meals to give them the right fuel.  We are enforcing bedtimes since their brains do the rewiring when they sleep.  We are waking them up early, packing lunches, fixing breakfast and sending them back to another full day of grueling thinking.  All of this DURING THEIR SUMMER BREAK.   We are tired, we are homesick, we are living in super tight quarters (3 beds, one room). The struggle is real!

But yet, these kids are resilient.  They show up every day and give it their all (for the most part…the adolescent boy has recently gained some testosterone-induced courage that has him acting a little out of character….let’s just say he’s determined to be miserable and wants everyone else to know by his body language just how miserable he is….but nothing The Morris Center can’t handle).  Sure, they are emotional at the end of the day and have moments that make us mamas want to barricade them in their rooms. But as kids with dyslexia, they are accustomed to having to work harder than others so they handle this better than most.  The good in struggle is the way it will prepare them for life.  Life is hard and it doesn’t play fair.  Everyone will face hard times.  When kids that always succeed face such times, they often can’t or don’t know how to handle it in the best way.  However, kids like mine will look struggle directly in the eye and proceed forward.  They won’t back down.  They’ve learned how to overcome and find success.  They won’t be victims of the unfairness of life.  Instead they will be empowered by those moments and rise above them.

This week was hard.  I felt defeated by the emotional roller-coaster that was only half-way over.  I didn’t know how I would possibly make it and continue to be who they needed me to be.  And at my lowest point, I was given a gift. Something to remind me why we are here.  Something to show me that this is working.  It was a conversation with my daughter on the way home one day:

A: I am reading “Ramona, Age 8” but Dr. Conway said I needed to be reading a harder book so now I’m reading something else.

Me:  That’s great, A.  I’m so proud of you.  Let me ask you….what do you think about all this really?  Do you think it’s helping you?

A: (no hesitation). Yes, it’s making reading easier.

Me:  Oh yeah? What’s easier about it?

A: Well you know big words, like “complicated.”  I used to have to sound it out like “co-m-p-li-cate-ed.”  And now I just say “complicated” all together.

Me:  That’s so awesome, A, and it makes me so happy to hear you say you can tell that it’s helping.  And we’re really only about half-way through.  What do you think it’s going to be like to read when we finish?

A: It’s going to be even easier.   It’ll be like glass….smooth all the way.

 

Bam! There’s my rainbow through the clouds.  The ah-ha moment I’ve been waiting to hear.  I feel empowered to push through.  We can totally do this, together.

What’s OT Have to Do With It???

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If you visit the  The Morris Center website you can read about their “Trans-disciplinary Team that uses evidence-based science; the science of how the brain learns and improves skills & abilities.”   The services provided include speech, occupational therapy, psychology and neuropsychology.  Great, that’s cool.  But, we really weren’t sure how OT would help our kids with reading.  I mean, neither of them had any occupational concerns that we were aware of upon arrival.  They certainly wouldn’t qualify for any kind of these services at school.  So we thought, “OT will be a bonus!  They’ll get to improve some fine motor skills they already have while in Florida getting help with dyslexia. It’ll be a win-win.”  What role could it possibly play?  We were about to find out….

Have you ever over-heard a conversation or even been part of a conversation that makes you feel a bit insecure or even defensive?  More specifically, has anyone ever said something like this to you: “I hate it when someone _____; did you see how he ______;   I don’t understand why she can/can’t_____.” Sound familiar?  Sure, we’ve all been there.  But what happens when the things being pointed out are things you yourself do/don’t do?  Umm….wait a minute…I do that!  Awkward!  I myself have been there many times and my first meeting with the Occupational Therapists at The Morris Center was no different.

Here’s what The Morris Center Website says about the Occupational Therapy component:

“OT provides specific instructive therapy that can assist clients in overcoming sensory processing difficulties, these occur in approximately 50% of the clients and may be one or a combination of the following:

  • Oral-motor and motor planning difficulty
  • Fine and gross motor delays
  • Visual perceptual delayskj
  • Somatosensory deficits (lack of body awareness)
  • Sensory hypersensitivity

OT works to improve overall strength, balance and coordination. Attention is also given to handwriting, oral control and ocular motor skills. This type of intervention helps build self-esteem and self-confidence.”

The word “sensory” makes most of us think about our 5 external senses, right? But wait!  Back up.  There’s actually 3 more internal senses.  They don’t get mentioned by name very often….probably because they don’t exactly roll off the tongue, but they’re kinda a BIG DEAL!  Here’s those big words I mentioned in a previous post:

VESTIBULAR                INTEROCEPTION                    PROCREOCEPTION

Now, I could make it easy on you and explain each of these in detail (thanks to the amazing OTs who are teaching me all about them).  But, this isn’t a medical blog and I couldn’t begin to talk like an expert on any of these subjects.  But I dare you….no, I challenge you, to look these words up and learn all you can about them!  It truly is fascinating stuff!

At that initial meeting, the OT, Dr. Diana Croom-Atkins, did an amazing job of breaking it all down in terms I could understand and how it pertains to my kids and the way they learn.  I should also mention she has specialized training beyond the basic occupational therapy credentials. In a nutshell….these three internal senses serve as a foundation that determines all the others.  Knowing force, writing hard with a pencil, recognizing hunger or headaches, slumped posture, head tilt, fidgety…. these are some of the things I heard mentioned. I’ll admit, with each new mention, I caught myself sitting up a little taller, consciously keeping my head from tilting, examining my grip for the first time.  In my head I was thinking, “oh, I do that; I know where he gets that; yep, me too; uh oh, she must be seeing where they get it all in real-time as she watches me.”   I even  jokingly said to her, “I bet you are diagnosing me as we speak.”  She just smiled.  But really….

As she went on to discuss specific things she’s observed my kids doing, she also explained how it may be preventing them from learning at their optimal potential.  When there are gaps or cracks in these senses, their ability to read/write/understand is deficient.  With OT, they can fill in some of those gaps and make these senses more efficient.  With efficiency, comes higher levels of learning potential. And for my kids, this means they can WORK LESS AND LEARN MORE.  Can you imagine?  How frustrated would you be if you had to work 5 times as hard as everyone else in the room to learn the same things? No wonder we are dealing with anxiety, anger and exhaustion on the daily.  But now we are at a place that is examining our kids to their cores, learning the WHY behind their struggles and then telling us THEY CAN HELP!

As people, one of our ultimate goals is to find joy in life.  It’s possible for us all, but for kids with dyslexia, the road can be longer and sometimes seem impossible.  Struggling to learn leads to struggles in life. As a parent who would do anything to make life a little easier for my kids, this treatment would be an answered prayer.  The more I learn about the occupational therapy component, the more I recognize just how critical it is for my kids.  Who knew?  I have a new-found respect for this important field.  And also….I’m pretty sure I would benefit from some OT myself.  I’m betting everyone else could too.  Maybe I can get a buy two, get one free coupon for the OT……just kidding.

Every day we are on this journey I find myself in awe of the human body and the complex way every part intercepts and intertwines.  How anyone could think there’s not a divine Creator is beyond me.  More than ever, I am amazed by the Greatness of our God.  One week closer to home……

 

Wait! Could You Say That Again?

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Vincent Van Gogh once said, “Great things are done by a series of small things that are brought together.”  Well I certainly hope he is right!

This week we finally had our comprehensive evaluations for all three kids.  If you’ve ever had a battery of testing done, then had to sit down with a physician to hear the results, then you’ll somewhat understand what this was like for us.  We spent almost 7 hours of our week just listening to the team break down every test, every observation…. what it all meant, how it affected our kids and how they could help.   There were three doctors from different fields of study in this meeting explaining basically every fiber of each of our kids.  We listened, took notes, asked questions and recorded the conversation (thank goodness!).  After the meeting, on the drive home, we couldn’t formulate the words to even talk about all of this information.  We needed to digest and process all that they said.  It’s been 3 days since and I’m still wrapping my head around it.  We have so many questions, so many concerns and so many doubts.  But at the same time…..it all makes sense!  All of it.  While we may not have understood the science behind it all or how the testing could pinpoint such intricate details, we do see how it all relates to our kids!  And each kids’ results were different but spot-on when you look at his/her behaviors/thinking/reactions/etc..  You know that thing you notice about your kid that’s a little different or unique?  You think it’s just something you notice, maybe a little quirk about him/her.  You keep it to yourself, but one day someone else notices it too.  When they mention it to you, you say, “YES!!!  I THOUGHT IT WAS JUST ME THAT NOTICED THAT!”  Yeah, that’s pretty much what I was thinking the entire time.  So much of the things we notice (or don’t notice) aren’t just quirks.  There’s actually a scientific reason for it.  These doctors not only pointed our these nuances, they explained the why behind them and then how they could make it better.

I’ll be honest, after hearing all the testing results and then analyzing what every sub-category means for your child, we left feeling a little sad.  So much of their struggles, beyond academics, have now been explained.  So much of what they do/don’t do that drives us crazy are things they can’t help.  Cue the mom-guilt.  I can think back to hundreds of times I’ve been irritated, aggravated, confused about things they have said or done, or things they haven’t been able to do.  It makes no sense!  Until now…. now it all makes sense.  Now I see that they weren’t being lazy, defiant, distracted, negative, slow.  They actually couldn’t help it.  Poor kids.  No wonder they did that……  it broke my heart a little.  However, to the credit of TMC staff, they were quick to discourage us from feeling any kind of guilt.  That’s not the point.  The point is to fully evaluate my child, find their deficits and find a way to help them.  The OT said something that resonated deeply with me regarding senses.  She said, “I would never tell a parent their child doesn’t have any vestibular, proprioceptive or interoceptive senses at all (more on those big words later).  It’s just not working efficiently.”  That’s encouraging and if we can keep our eyes focused on that, it will make all the difference.

Leaving the meeting wasn’t all sad.  We left with a better understanding of why we are here.  We’ve found the deficit, now let’s help them overcome it.  There is hope in knowing that a clinic that can identify such things can also make them better.  They are shooting us straight in all areas and giving us realistic expectations.  Some seem a bit reaching but we are hoping for the best. I now understand what each discipline (speech, language, Occupational therapy and psychology) is doing for my kids.  How this trans-disciplinary approach merges and intertwines together for the overall result???  I’m not really sure.  But like Van Gogh said,”Great things are done by a series of small things that are brought together.”  Let’s press on!