Monday, January 27, 2014

the elephant in the room

This post has been swirling around in my mind for a while now.  About six months to be exact.  To be honest it took a while for me to decide if I should publically “put this all out there.”  I’ve never spent as much time analyzing, editing, deleting, and rereading a post for this blog as I have on this one.  It is so important for me to be clear, yet sensitive.  It is a delicate topic.  One that deserves careful thought and consideration.  I had to consider if it was even necessary to share.  Will people think differently about the little boy they have come to know and love on this blog?  His birthday week it has become clear to me that it is time to share it. 

What I am about to disclose to the blog world doesn’t change anything.  And if everyone reading this gets to the end and still believes that, then I achieved my goal.  Let me be clear… Andrew is still the same Andrew he always was, and always will be.  Nothing I am about to say is more important for you to know than that.

I decided to share for three reasons:

1- I would like our family and friends to know, and this blog is the best way to reach everyone without having to explain this story 273 times.  Sharing this will explain a lot about Andrew that many people (who know Andrew in person) may have wondered about.  Things that I make excuses about or try to hide.  The elephant in the room, if you will.  None of you have asked for an explanation, but it’s time to give one.

2- It might help someone else.  Plain and simple.  Because we all know in this blog world, there is always someone else out there who is searching for answers, grasping at straws.  Pouring over the internet to find an explanation for something their child does that they need answers to.  I have been doing this for almost 7 years. 

3 - Last but probably the most important reason of all, I felt like after my blog post last spring where I discussed Andrew’s difficult Kindergarten year, I feel I owe it to him to update on his progress.  Because it’s been miraculous.  I feel like a follow up update is necessary and long overdue.

I’m warning you.  It’s long.  But please stay with me.  I tried to intersperse some old photos along the way, because it's fun to look back.  And hard to believe my baby is going to be seven years old this week.

Many of you remember this post at the end of the school year last year where I reluctantly announced that Andrew’s year in Kindergarten didn’t exactly go as well as we had hoped.  To put it bluntly, he struggled.  Not just academically, but socially and behaviorally as well.  (By the way, it’s never easy to publically admit that your child is not successful in school.  It’s especially hard for me.  I’m a teacher.  My kid is supposed to excel, right?)

So let’s cut to the chase…

Sometimes Andrew flaps his hands.  He hums.  He makes clicking sounds.  He jerks his head and rolls his eyes.  Blinks a lot.  Now, these obviously are not things I write about on the blog.  They are minor details in the scheme of things.  But if you know Andrew, you probably know he does some of these things.  Maybe you’ve wondered why.  Or perhaps you haven’t noticed at all, because he doesn’t do them all the time.
So what does this have to do with him not doing well in school?  Well, when he is doing these things he tends to not be listening.  He’s in a “zone” and not really clued in to what is going on.  Most of the time Andrew does these things when he is excited, but sometimes when he’s overwhelmed, bored, shy, or doesn’t know how to react to something.  Enter Kindergarten.  Enter new, young teacher who wasn’t equipped to handle this kind of issue.  New experiences, huge transition. 

Let me back up…

The truth is that deep down I’ve always known there was something else.  My mommy instinct told me right away.  When he was a tiny baby and would flip on his back, stiffen, and flap his hands and feet, it scared me.
I worried about Autism spectrum disorders, seizures… But moments later as I would cradle him in my arms and he would snuggle up to me and smile the most beautiful smile, it made me worry just a little less.  His personality was always there.  He literally sparkled.  That smile never wavered.  And deep down I also knew that whatever “it” was, it wasn’t holding him back from growing up and being the amazing, friendly little boy that he is.

Whatever it was, it didn’t matter.  He thrived in preschool.  His teachers and I would sometimes talk about the fact that he would hum at the lunch table, and his friends would sometimes ask him why he was making those noises.  But it never interfered, and no one was ever concerned.  To be honest, many people never even notice it.  I think for Craig and I, as his parents, we notice it the most. 

Years ago I brought it up with Andrew’s pediatrician, whom we love and trust.  We started to speak more with teachers, specialists, his audiologist, eye doctors… All of these people who knew and loved Andrew, and had worked with him for years, put our fears aside and assured us not to worry.  However, we realized that focusing on each separate issue was getting us nowhere (for example, since he was blinking a lot, I thought that warranted multiple appointments with the eye doctor).  Did it have to do with his hearing?  His audiologist assured us it didn’t.  No one else offered any insights.

While his personality is unaffected, the bottom line was… we knew we had to take action when these things started impacting him at school and in activities outside of school.  Hindering his learning and his ability to focus and understand what was going on around him.   I was literally sending my child into the trenches of kindergarten every single day knowing he was learning next to nothing.
It bothered me more than I cared to admit when his Tae Kwon Do instructor made Andrew do push ups for “rolling” his eyes at him.  “Hold still Andrew, focus Andrew…” he would say during class.  I could only bite my tongue for so long.  I needed an explanation.  It soon became clear that he couldn’t focus, couldn’t hold still.  It wasn’t something he could control.
When his Kindergarten teacher told us he was in the “strategic” reading group (whatever that means), and several of his scores across all subject areas were the lowest in the class, worry began rearing its ugly head once again.  And let me just say that those things are very difficult for me to put out there.  They are things I never told anyone but my mom and a few close friends.  It’s not that I wasn’t proud of Andrew, because I always am.  But here I was a teacher, and my son was struggling.  And there was nothing I could do to make it better.

We knew it was time to delve deeper into the issue and try to get some answers.   So our pediatrician referred us to a neurologist and a developmental pediatrician, who both had waiting lists months long.  So we waited almost 6 months for these appointments, knowing that each day that passed, Andrew was falling farther and farther behind.  It was torture as a parent.  Every day felt like a waste.  Time was of the essence. 
This has always been a favorite...his red carpet entrance while being honored at the Heart Ball

I won’t go into all the details of these appointments, but we were extremely impressed with the doctors and they performed an extensive evaluation and lots of testing.  Autism spectrum disorders were ruled out within minutes of Dr. Noble meeting Andrew.  But he did offer us that long awaited answer.  Finally an explanation for what we had wondered about for almost 7 years.

Andrew has Tourette’s Syndrome. 

It is such a relief to finally say that out loud.  To put that out there. 

And yes, you read that right.  While many people think of Tourette’s as something like this:
That’s not the reality.  It has taken me some time to learn more and accept this, and be able to offer up a little humor.  Because I will admit that my breath was taken away when I actually heard the doctor say it.  All I could think about was that weird syndrome where people shout and yell out inappropriate things at random times.  Was he really telling me this?  Let me be clear.

Andrew doesn’t do any of those things. 

A while back I had googled some of Andrew’s characteristics and Tourette’s Syndrome popped up on my search.  I quickly put it out of my mind and moved on, refusing to believe that was even an option to explore.

I was in denial.
I didn’t want it to be that.

But why?

It doesn’t change anything.   I just kept repeating that to myself enough times and it finally sunk in.  This was no big deal.   The only difference is, now we have answers.  Now we know why Andrew does what he does.  Nothing has changed except that now we know why.  And now we know how to help him be more successful academically.

Tourette’s is often referred to as a “tic disorder.”  Basically, all of these characteristics that Andrew exhibits are called tics.  They are movements that are out of his control.  They can be described like an itch that you can’t scratch.  You can hold them in to some extent, but ultimately it will drive you crazy until you have to let the movement occur.  There is not much for medication that is known to help.  Of the people with TS, 2/3 outgrow it and tics will decrease over time, and 1/3 stay the same or get worse. Dr. Noble was fairly confident that Andrew is in the 2/3 category, although there is no way to know that for sure.

The good news- Andrew’s TS is very mild.  It doesn’t affect his health in any way.  He does not suffer from this, like many people with Tourette’s do.  Most of the time, Andrew’s tics are triggered by certain things in his environment.  For example when he’s happy or excited, his hands flap back and forth.  When he is not engaged in learning, he tunes things out by humming, or shaking his head, or rolling his eyes.  These are not things that occur continuously like some people with TS.   They are inconsistent and involuntary movements and sounds that he cannot control.  Some times and some days they are worse than others. 

This is the thing everyone needs to understand:  He cannot control it.  It took me a while to let this sink in.  I am ashamed to admit that all these years I have been trying to hide these characteristics.  Telling him to stop, when clearly, he couldn’t.  Getting embarrassed when he does them in public.  Wanting to take him and run when we’ve been in situations where these tics were completely noticeable and it felt like every eye was on me, waiting for an explanation that I didn’t have. 

I have been consumed worrying about what others would think, rather than just accepting it and realizing that Andrew was not doing these things out of spite.  Deep down I knew that.  But it just wasn’t socially acceptable.  Why did I care so much about what others thought?  It’s hard to explain.  I think ultimately I wanted an explanation, so I could know the reason behind this mystery that we’d always known existed.

I now have realized that it is so freeing to be around people who already know Andrew’s diagnosis (refer to reason #1 for sharing this information).  I was just telling my BFF the other day how freeing it feels that for the first time, I don’t have to try to be discreet while telling Andrew to stop humming, or jerking his head, or flapping his arms.  By “putting it out there,” all selfish reasons aside, I have now allowed Andrew to just be Andrew.  And I continue to be proud of the amazing little boy that he is.
But let’s be real.

Socially… I’m terrified for him.  I’ve always worried about his differences and how they will impact his interactions with others.  Would the kids tease him because of his hearing aids?  Or would they point and stare at his scar at the swimming pool?  I kinda feel like he has enough on his plate to deal with.  Social things are many times so much more difficult to explain.  They are much more visible than his chest scar.  They can’t be hidden (Trust me, I’ve tried).
In the past Andrew has had some difficulty identifying with peers and making friends.  This improves every year, but it still takes effort.  His cousins are his preferred playmates, and he normally surrounds himself with one or two special friends at school.  He’s never cared much about sports, which is what most boys his age are into.

After we moved and attended our first football game this fall, I encouraged Andrew to join in with some of his new classmates who were tossing the football around during the game.  Reluctantly, he joined them.  And bless his little heart, he was trying so hard to fit in.  But I could tell he wasn’t having fun.  It’s just not his thing.  Admittedly, sometimes I want it to be his thing.  Part of me feels like it’s his “ticket” to acceptance.  Then another part of me feels like why am I interfering?  He is doing just fine on his own. 
Andrew has already proven time and time again that he is a fighter.  He can persevere.  He can put differences aside and just be himself.  And he is able to shine bright enough for others to see past what separates him.  He is proud of who he is and he has established his own interests and found his talents.  The things that make him happy.  And ultimately, that is all that really matters.  And he can make friends, because he is an enthusiastic, friendly and funny little man who captures the hearts of everyone who knows him.
How can his arms flapping when he's excited be looked at as negative, as long as his face looks like this?

I am confident that TS is not going to define him.  It isn’t even going to be a big part of his life.  Andrew's body is so complex.  He is already battling so many things and this is nothing new for him.  Now it just has a name.

So, how is Andrew doing today?  A move to a new town and new school with a new teacher is about 6 months under our belts.... let me explain.

And this is the miraculous part of the story.

At our appointment with Dr. Noble last summer, we came equipped with his Kindergarten teacher's surveys and stacks of information from the school psychologist, social worker, etc.  Everything pointed to ADHD.  His Kdg teacher kept calling him "unfocused," when really, he was just having tics (which we didn't know at the time).  For some reason, his tics became much more present in Kindergarten than they ever had before.  He was having them about 85% of the day (and during this time was being referred to as "unfocused.")  We ended the year with an IEP meeting to add reading, math and writing goals back to the IEP, which had been removed the year before because he had done so well in preschool and was more than ready for Kdg.

Being the amazing doctor that he is, Dr. Noble wanted to wait until the new school year started and ask his new teacher to complete the same surveys before making the huge decision to put him on medication.  It was also a double edged sword because most of the meds used to treat ADHD can increase the tics.  There is plenty of research out there connecting Tourette's, ADHD and OCD (but let's face it, he gets the OCD from his mother.  That's certainly not new information!  Ha!)  In all seriousness,  we ended Kindergarten discouraged, feeling helpless and extremely concerned about Andrew's future in school.

Enter first grade.  Enter Mrs. Nichols.

I do feel like a large part of the success of this story is because of her.  All it takes is one caring teacher, to love, to understand, to desire what is best for your child and to believe that they can succeed.  God bless her.  I have been a teacher myself for over 13 years and I can honestly say that she is one of the best I have ever known.  I know with 100% certainty that this move our family made, this new school and Mrs. Nichols were placed into our lives for a purpose.

I was so worried about uprooting our family, especially Andrew.  But he has done nothing but thrive.  He has made up an entire school year in 6 months time.  He is reading on grade level.  He comes home and wants to read books.  He actually asks for paper and a pencil to write stories and he is excited about learning.  And it's been a long time since we've seen this occur.  At conferences in the fall, Mrs. Nichols quickly proposed dropping all academic goals from Andrew's IEP.  At this point, Craig and I didn't know if we should laugh or cry.  I am not sure the same goals have been added and dropped this many times in the history of IEP's.  Ha!
Needless to say, when we returned to Dr. Noble for a follow up this fall, he took one look at Mrs. Nichols' survey and was stunned.  He had already cleared it with Andrew's cardiologist to start him on medication for ADHD.  We were ready at this appointment to learn what we needed to and get the ball rolling.  But we all breathed a huge sigh of relief when he put his papers aside and told us the responses didn't warrant putting him on medication.  A huge answer to prayer.  And a direct result of excellent teaching.

We have been learning along with Mrs. Nichols as far as what works for Andrew to help him be successful in class.  I am still learning, researching and finding lots of good resources out there for teachers and parents.  I have shared a few suggestions with her based on my findings, but she is doing most of it on her own.  She has found what works, and we now know that when Andrew is engaged in learning, involved and excited about what is being taught, his tics decrease dramatically.  We have all learned how to manage his symptoms so he feels comfortable in class and can learn.  Mrs. Nichols said she hardly ever notices the tics.  So he has gone from 85% of the time, to almost 0%.

That is where he was in preschool, with another incredible teacher.  This is why I was so confused and discouraged last year when things were going downhill fast and I couldn't explain it.  I just kept saying "but he did so well in preschool!"  And everyone kept telling me Kindergarten was so different than preschool, which is true to some extent.  But it turns out there was a little bit more to the story.  And now we know that Andrew's future teachers are going to have the biggest impact on his success.  We know that all kids need good teachers, but in Andrew's case, they are going to be essential for him to be able to learn.  So now I am praying for all of his future teachers, and that God will purposefully place each one in his life.  We know there will be bumps in the road, but we know that ultimately, Andrew will persevere.  Just like he always has.

Oh, and just a fun little tidbit for those who have made it this far... Remember Dr. Noble?  The amazing doctor who finally gave us the answers we needed to move forward?  Guess what?  He has Tourette's Syndrome.  This is a wonderful article about him and how he has overcome the obstacles of TS and is symptom free today.  He gives us hope.  And we don't think it's a coincidence that he is Andrew's doctor.

So, now you know.  Andrew is still the same Andrew he has always been.  Nothing has changed.

His personality still shines brighter than the brightest star.
He is still the miracle that turned our world upside down.
And in 3 short days, he's going to turn seven.

And that's all you really need to know.

Related Posts with Thumbnails