Zane's Story

Zane's Story

4.05.2014

While 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.

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.