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.