Zane's Story
4.05.2014While I was in college I was fortunate to do in-home autism therapy. I was able to work one-on-one with amazing children and their families. One of the mothers I used to work for was kind enough to share her sons story. And in honor of autism awareness I am posting it today. I hope you are as inspired as I was reading this story. And I hope you enjoyed our spring cleaning week as much as we did!
A Story in Honor of Autism Awareness
For as long as I can remember, I have always
wanted to be a mom so it's no surprise that we decided to get pregnant only a
year & a half after we were married. I have always loved kids &
especially children with special needs (I should've known that I would have one
coming).
Zane was born the morning of November 15th
2002, he was induced a month earlier but was a healthy baby boy. His dad & I couldn't have been
more happy! During the first year Zane hit pretty much all
his milestones on time and was a very happy, easy going, baby boy. Some
of my most fond memories are going in his room each morning when he was awake
and seeing that sweet beaming face. From the time he could smile, Zane
had the biggest grin from ear to ear the moment you entered the room.
I've never seen a little baby boy so happy to see you, my dad used to always
call him Guy Smily. Sadly though, that all faded away.
Hind-sight is always 20/20, and when I look
back I can see that sweet happy boy drift away into his own world starting
around 10 months old. At 10 months Zane got very sick. This was the
beginning of his spiral into his own world and he wasn't the same after.
It was almost as if his entire body simply shut down. He had
horrible flu like symptoms for about two weeks and started having chronic
diarrhea all the time. We were in the doctors office all the time between
1 and 2 yrs of age. Zane never had a ton of words but the few he had
started to drift away during that time as well. He used to wave goodbye and that just disappeared. But, for some reason I was unaware at the
time of any of this happening. Maybe it was because he was my first child or maybe it was
just because I was so happy to have a family. Who knows?!
It was a family member that brought this all to
my attention. My sister-in-law had watched my son several times,
noticed some signs, and brought them up to my mother. My mom at first was like "no way". But a few weeks later, after a family trip where we all stayed in the same
house for a few days, she also started to recognize that something wasn't quite
right. About a week after our family trip my mom called and wanted to
take me to dinner. We went to dinner and after she asked me if we could go to a park
and talk. At that moment I knew something was wrong.
She started with how
much she loved Zane and then brought some signs to my attention. For example when he acted as though he was deaf. I could be calling his name from right behind him
but he wouldn't turn around, but then he would hear an airplane before anyone
else. He never made eye-contact. He didn't
play with toys appropriately. He had extreme, I mean EXTREME tantrums! Then
she told me that she thought Zane may have Autism.
The first thing that came to my mind was an extremely low-functioning boy my brother worked with for years growing up, and now my mother thinks Zane has Autism! My heart was immediately broken! Kudos to my mom though. She was prepared and knew I would be an emotional wreck (and even more of a wreck than normal because at that time I was a few months pregnant with kid number two). She had all sorts of information and how there was hope for kids diagnosed with Autism.

The first thing that came to my mind was an extremely low-functioning boy my brother worked with for years growing up, and now my mother thinks Zane has Autism! My heart was immediately broken! Kudos to my mom though. She was prepared and knew I would be an emotional wreck (and even more of a wreck than normal because at that time I was a few months pregnant with kid number two). She had all sorts of information and how there was hope for kids diagnosed with Autism.
For the next few months, my husband and I
went back and forth. Zane is on the spectrum, he's not, etc. I'm no
doctor, but seems to me that denial is a pretty common behavior and we were
in complete denial. Our Pediatrician, as
well intentioned as he is, was totally and completely clueless about Autism.
And other than referring us to Kids On The Move at Orem Community Hospital,
where he qualified for early intervention, the pediatrician was unfortunately
useless. Thru early intervention we ruled out things such as hearing
problems and started having speech therapy and other intervention thru Kids On The
Move. During this time, I started to become more aware of the signs and
began wondering if in fact Zane was on the Autism Spectrum. I was
becoming more and more pregnant and felt like I wanted to get some sort of
handle on what was happening before our new baby girl was to arrive.
I remember the evening to this day, very
vividly, while rocking Zane before bed I poured my heart to God asking for help
for my baby boy. I wanted to know if Autism was the hand that Zane was
dealt. So I could finally put a plan together to help my baby boy and move on
with life as usual or unusual. The next day I received my answer. The
Early Intervention specialist from Kids On The Move was coming for a
visit. She had been working with us for a couple of months and the
first thing she said when she came in was that she needed to have a talk. Right then I knew this was what I was looking for. She then went on to
tell us that in her opinion she thought Zane was on the Autism spectrum.
I think she was a little taken back by my reaction because I wasn't upset. I
was happy that she was honest with me and I finally knew what the problem was. I still didn't know exactly how to deal with it though.
So we finally knew what path we had to go down. The kid was still so
young and at that time the "professionals" weren't the most helpful.
Autism is unique to each kid. What works well for one kid might do nothing for
another but we were (and still are) determined to do everything possible to
help our son.
So we started with the easy stuff. We cleaned up his diet. Zane had chronic diarrhea, a very distended
belly, and other gastrointestinal issues. The whole family went GFCF. Pretty
quick we saw some results, but still wasn't the "normal" kid (what is
normal anyways?). Next we added a mountain of supplements and vitamins. This
was especially painful because this poor kid couldn't swallow pills so we had
to crush them up and mix them with juice. He would gag down this thick
chalky orange juice-like crap. But he took it like a champ.
The behavioral programs came next. We started an
intense ABA program for about 40 hours a week. If we had to do it again
we wouldn't have started there. We really didn't care that Zane knew his
colors or numbers, and could rebuild block towers from a picture. What we really wanted was to have a meaningful
relationship with our son.
Fast forward a couple years (and literally
truckloads of dollars), we transitioned into a Floortime program, and bang,
this was the program for Zane. This was the first time we saw real true
signs of hope. He started to develop real relationships, had the desire to
really connect with people, more importantly us! He didn't talk much
until this point. He had learned some
communication from his ABA program, but it was all completely utilitarian. He would ask for something, get the answer,
and then move on. I remember one of the first meaningful things he said was while my husband was painting Zane's room
and spilled some paint. Zane was sitting
there watching and blurted out, "WHAT THE HELL!!!". He then exploded
laughing hysterically with deep belly laughs. Who would've thought these three
words would make me so happy but they did!
I remember one of the first times he started to show real
emotion. We had just left our vacation home and
were driving from Las Vegas to Orem, and he started a little whimper, and went to
full blown sobbing. Not some little kid
sob, this was full-blown, hardcore life-shaking sobbing! Through his muffled
sobs hidden under his blanket he managed to tell us how much fun he had, and
how sad he was that our vacation was over. He was about five years old at this
time. We had never been so happy for this boy to be so sad. He was starting to become more aware of this
amazing world around him.
Over the next couple of years we continued to
see progress. There were definitely
still downs but we noticed that there was always sun behind the clouds. After six long years of a special diet and
multiple hospital stays, including an eight day stint where we almost lost the kid
and he had to go through emergency surgery, he was finally able to come off a
special diet. This little champ was
almost eight years old by the time he had his first ice cream cone.
We had a third child and Zane was way more
aware of her existence than he was of his first sister four years prior. He now
wanted to be involved in everything his sisters did. He learned how to ride a bike, scooter, snow
ski, water ski, wakeboard, read, and write. He became part of a dance team, a
theater group, tie his shoes laces, brush his own teeth, (wipe his own
butt!) as well as many other things.
He's a class-clown, strives for friendship, and reaches out to others
to develop relationships. He is loving
and compassionate, but he's still working on that whole empathy thing.
Now, as I look back over the last 11 years I can't
believe how much progress Zane has made.
There were definitely some tough years, especially in the beginning. Looking back I wouldn't change a thing (okay, maybe a few things). Zane has taught me so much and I honestly
do not want to know what kind of person I would be without him. He has made me more aware of the little
things. I praise each and every accomplishment no matter how big or
small. He touches the lives of everyone
he meets. He himself exceeds hope.
My parting words are this- don't give up on
these kids. They are smarter than we
will ever know and are capable of almost anything. Not all treatments are going to work, but
there's one out there that will work. And when you find the ones that work,
dive in head first! Attack with all your
might, fight for the kid, and never give up.
What an amazing story! I work in an elementary school with special needs kids. Families who deal daily with these needs, are huge heroes in my eyes. This is story of hope, humiliate. And to parents who faced the true head on and inspires the rest of us.
ReplyDeleteTerri- I'm so glad you enjoyed this story as much as I did. I really thought it was inspiring. And from knowing Rebecca, Zane, and their family, I personally I can say they are amazing!
ReplyDelete