Zach’s Story: “I Believe in Unicorns!”
October 23, 2012
On May 6, 2002, Zachary was born and I held my son for the first time. He filled me with so much joy, I couldn’t stop laughing. I remember staying up all night, admiring his perfect little hands, his sweet face and his endearing infant murmurings. This little guy, not even a few hours old, captured my heart and soul.
He was my mama’s boy, whose face would light up from the moment he saw me. His eyes were bright and inquisitive. And he loved being the center of attention, and would often enjoy showing off for the camera, an audience of admiring family, or even a cute girl in the grocery store. He was sparkly as a diamond, sweet as a jelly bean, soft as a marshmallow, covered in cookie crumbs, juice and, occasionally, dirt from playing in the flower beds. We couldn’t wait for the next day to arrive to show us what new silliness and adventures parenting would bring.
A little after his second birthday, my little boy began to disappear at an alarming rate. He began to grow silent. We didn’t notice exactly when it happened, but eventually, the silence became deafening. His incessant babbling and comments on things happening around and to him stopped, and he no longer laughed. He stopped playing with his sister. She cried often because she thought he didn’t love her anymore. The close cuddling and hugs that used to bring him peace and happiness became so uncomfortable that he would fight whoever tried to hold him.
He stopped playing with toys and would only carry things -- weird things that he didn’t play with -- he just carried them around and would cry if we tried to take them away. He also stopped playing with his cars. He just lined them up, perfectly. Not a single car was crooked. And if you tried to take one out of its place, he would scream so loud and for so long that his hair would be wet with sweat.
He sought shelter in really tight spaces. We would often search the house frantically, shouting his name, only to find him asleep, crammed into a cabinet, under the bed, a box, or a low shelf. He also stopped smiling. He stopped laughing. In photos taken with the same camera he used to love to show off to, there was no longer emotion on his face. My son was slipping away and I didn’t know why. I wondered every day if I had done something wrong.
I enrolled him in pre-school, where he seemed to improve a little. Instead of closing off the entire world, he now showed some interest in observing his classmates and occasionally giggled at their antics. But the differences between him and the other boys his age grew increasingly larger as time went by. The other kids TALKED, but my son was still strangely silent. I also noticed a range of emotions such as glee, laughter, anger, shyness from the other children, but Zachary usually had a stoic, empty look on his face, and had NO interest in interacting with the others. After about a month, one of his teachers took me aside and, as gently as she could, suggested that he may be autistic.
I won’t tell you what I wanted to say to her, but now I had a name…Autism. I set out to learn all I could. I rushed to the bookstore and bought three books from the psychology section and voraciously devoured them. As I read, I found some similarities between what they described and my son, but I still didn’t want to believe the connection. The next week, I gingerly brought the topic of our son up with his dad. His reaction was just the same as mine. “He’s not stupid! You’re his mom! What kind of mother believes people who call their kid a retard! How could you not stand up for him?” But as the summer progressed, he too realized that our little boy needed help.
Zachary was still not speaking. The other children -- realizing that instead of tattling on them, he would have a tantrum and get into trouble himself -- made him a target of their whims. To retaliate, Zachary became aggressive, hitting and throwing things at his oppressors. This is when his dad and I decided to put aside our pride, guilt and sorrow and called Search and Serve (the local Early Intervention group) to assess him. During the assessment process, a speech pathologist, nurse, and psychologist tested him in different areas. The process finished in late December, and we met the staff at the county school for Zachy’s IEP (Individualized Education Program) in January. “You need to trust us,” we were told. “We deal with hundreds of these kids every day, and you need to trust our experience.” And we fervently believed.
January 13, 2005…Zachary was diagnosed as moderately retarded with autism. I remember that date because that was the day all my hopes and dreams for my son died. For the next two years, I scrambled to keep my boy from disappearing, but I had no hope that his/our life would get much better. We decided to just try to manage what life dealt us.
Autism. In spite of our best efforts to remain a “normal” family, it took over our lives. We tried to support the teachers who worked with Zach by being grateful for everything they were doing. The only way I could see a future for my son was by letting more people know about autism, and hopefully, understand and accept my son. Robert and I refused to hide our boy and his condition. Instead, we willingly talked to anyone who would listen. Even the local paper interviewed us to write about autism and the gratitude we had for the smallest of improvements.
But I still had many sleepless nights. Mostly because Zachy did not go to sleep until 2 a.m., but also because of the fear I had for his life. Would anyone understand him, be nice to him, care about him, love him? And would he even know? Our lives became smaller and smaller because we could no longer go very many places without Zachary going into a panicky tantrum from too much noise, too many objects, and too many people. And so we very rarely went out as a family, and even as a couple. We were just trying to survive. The only thing that kept me going was “moments of brilliance” that popped up from time to time. The first such moment was when he came to my room and said “Ah wuv oo” to me. But those moments were rare and fleeting.
After Zachy had three separate bouts of the rotavirus in a month (including three different trips to the urgent care and ER), we noticed him curling up into a fetal position all the time. He was even curled up in his sleep, like a shrimp. And when he wasn’t, he rested his stomach on stairs, balls, arms of couches, and pillows. When I asked the pediatrician about it, he told me, “It’s just what kids with autism do.” He also stopped eating. Well, he stopped eating everything except McDonald’s chicken nuggets, macaroni and cheese, and milk. “Kids with autism typically eat very few foods. Don’t worry though, he’s getting enough calories and he’s drinking milk.”
But his health was deteriorating. His skin became translucent, shadows appeared under his eyes, he became sluggish and fatigued easily, his face became puffy, and his belly began to balloon while his arms and legs shrank. We were told not to worry, it was normal in kids with autism.
He also developed an insanely high tolerance for pain. He never cried when he fell, or even bled from a cut. He would pound his head on the wall, on the floor, on any hard surface repeatedly without a whimper. In August, he broke all three arm bones on a trampoline and did not utter a sound. He fell asleep in the ER while waiting to be transferred to another hospital to have metal pins inserted to put his arm back together. Every time he was injured, instead of wailing, he would merely look at his injury with a puzzled look on his face. We knew something was wrong even when we were told nothing was.
At this time, Zachary was 5 1/2 years old, and was still wearing Pull-ups, not talking unless you count labeling objects at his Special Day Class, and had highly sensitive hearing. The sounds of children singing, grocery stores, and any social gathering was so painful to him that he would clasp his hands tightly over his ears and rock back and forth until I carried him out. He wouldn’t sing or even do the hand motions to songs during “circle time” in class, and hardly a day went by when he didn’t have a meltdown with his teacher. He would scream and bang
his head on the floor after eating meals and snacks, and he never hugged or played with his family. In fact, our lives had become a routine of tiptoeing around anything and everything that would potentially trigger those mind-blowing meltdowns that left both Zachy and us utterly exhausted. Birthdays were especially empty…he had no friends.
Our lives took a drastic turn when my husband suggested I go to an autism conference in Anaheim. I went…full of pessimism, skepticism and doubt. I was angrily resigned to the life we were living now. Some lady named Lisa got up to welcome the group and took a poll. “How many of you are professionals?” About 30 hands went up. “Now how many of you are parents?” My hand went up…along with almost every hand in the hall. Then, she introduced the speaker.
Instead of waxing eloquent about how wonderful he was, the guy jumped right into biology, physiology, and bio-chemistry. Pictures of kids with the same distended belly, sickly translucent skin and shadows under their eyes and expressionless faces were shown. Then, pictures of inside their intestines explained what was going on. Red, raw lesions were giving them pain, and because they were voiceless, they curled up, rested their abdomens on pillows, balls, furniture. Just like Zachy.
Then they showed the “after” pictures of the same kids. Pictures of bright-eyed, laughing faces with healthy pink cheeks, hugging and playing with other kids, loving their mommies and dancing with their daddies. I stopped writing and just stared at those images. Up there on the big screen, pictures of hope I was told didn’t exist dared me to deny their existence.
Then, the speaker called up his son. I craned my neck to see this creature…a creature that wasn’t supposed to exist, a creature as mythical as a unicorn…a fully recovered child. Seeing this boy march confidently to his dad shattered something in my heart and all of a sudden, I broke down into tears and sobs. Hope that I had locked up in a tiny box and stuffed into the deepest part of my heart had broken free. I couldn’t take my eyes off of him. After all, when one sees a unicorn for the first time, you’re afraid it will disappear if you look away.
I don’t remember how I got there…but I ended up in the exhibitor’s hall in front of a parent support booth…sobbing uncontrollably into the arms of a volunteer. I was at the TACA (Talk About Curing Autism) booth, crying, “I needed this two years ago! I’m too late!” I repeated over and over again. I thought I missed the chance to save my son. Once I calmed down and dried out, she told me it was never too late, I needed to believe that and I owed it to my boy to try.
I called my husband and told him everything I learned, and why “they” said it helps… and about the unicorn kids I saw. “We start now,” he said. “Learn all you can there and come home fast.” Right after we hung up, he cleaned out the pantry and the refrigerator of all the wheat and dairy we had, and the local homeless shelter had one of the biggest personal donations the very next day.
We began healing our boy October 17, 2006. The first thing we did was pull all the dairy and wheat (casein and gluten) out of our whole family’s diet. Not only did we want to eliminate any possibility of cross-contamination, we have a “one for all, all for one” mentality. We noticed small changes in Zachy for the better. He seemed more “with it,” his eyes were losing their “haze” and started to shine more often, and he started going to sleep earlier. All this happened in the first week. We also met with our MAPS doctor and scheduled 40 dives in an HBOT (hyperbaric oxygen treatment) chamber. Lab tests were run on Zachy to see what was going on in his body.
I wondered if the things we were doing had any real effect, or if it was just a product of one-on-one time with Zachary. Then, the conversation that rocked my world, the first conversation with my son, happened. One evening as I was washing the dinner dishes, Zachary was on the bed watching some kid show and giggling from time to time. (Giggling? At the program? He hasn’t done that before. When did that start?) Then all of a sudden, he looked up at me and said very clearly, “Thanks, mom.” I was shocked, but I responded, “What for, Zachy?” His response floored me. “No more tummy owie.” He flashed a big grin and, giggling at what was on TV, waited for my response. I stared at him. Sure enough, he was comfortably stretched out on the bed, not curled up or with a pillow under his stomach. In that single moment, things rapidly came together.
It was a horrible revelation of how much pain my son had been in, and for how long it had lasted. For his entire existence that he could remember, he was in pain. He couldn’t tell me he was in pain because that’s what he thought was the normal way to feel. And for the first time in his life, his tummy didn’t hurt. He hurt for 5 ½ years before he knew relief…and he was thanking me for stopping the pain. “That’s really good, Zachy!” Trying to keep the tears from running over (the last thing I wanted to show him was that talking to mommy makes her sad), I quickly grabbed a pillow, went into the closet and bawled until I lost my breath.
During this time, Robert said that Zachary was like a newborn in the way that every time you saw him, he was changing. “You’re bringing a different boy home every week!” he declared. We were finally on the right track, and like hell we were getting off this train! That Halloween, I asked if Zachary wanted to be a pirate (again). “No! I wanna be Woody! Toy Story Woody!” Ok, so when we got the costume, he was so happy, he announced “I’m Woody” to everyone in the clinic.
When he returned to school, the special day class teacher noticed a dramatic leap in all his abilities. Her exact words were, “It’s as if a door has opened and he wants to go through and join the world.” Zachy showed knowledge of all the letters and was decoding words phonetically by himself. He also started joining “circle time” songs and hand motions.
When the school year came to an end, we decided to home school him to prepare him for kindergarten, and the kid absolutely blossomed! By June, he had exceeded every goal in his IEP for the next year. His skills and needs no longer fit any of the programs the school district and county designed for him. We decided that, if there was no place for him, we would home school him, but why not try the nearby private school that knew him before? Was he well enough to go there?
Before accepting any student into their kindergarten program, it was this school’s policy to asses all students before agreeing to admit them. Zachary scored high enough on the assessment to be accepted, and the areas he scored low on would be supplemented by Nikki, his aide that he was working with during the summer. We were ecstatic! For the first time, I was buying school supplies and uniforms for a little boy…my little boy.
The first day of school hummed with excitement and anticipation. His eyes sparkled and he couldn’t stop grinning. There was a stampede as children found their old friends and went to their classes. We looked like a normal family on the first day of school. Zachy quickly became accustomed to the daily routine of school, and Nikki was right there if he needed her. In the beginning, she had to be right next to him to keep him on track and focused, but by the end of the year, she was more of a classroom aide than Zachy’s aide.
Before school, Robert and I debated the pros and cons of doing a “What is Autism?” kind of presentation with the kids to pave the way for Zachy. We discussed this with his teacher in a meeting before school started, and decided against it. “Let’s have the kids know Zachy for who he is, and not what he has, and let’s see what happens,” she said. And they liked him and accepted him as just another kid.
By October, the five boys in his class were officially a “gang.” They fought, made up, and protected each other. Zachy would come home, smile and giggle at some memory of what happened at school and re-enact the scene. And I’ve heard that the best social therapists a kid with autism can have are 6- to 7-year-old girls. Well, we had 13 of them who thought Zachy was “Soooooo cute!” and were more than willing to tell him what to do. He was thoroughly enjoying the first friends he ever had.
At the beginning of the year, I was anxious every Friday morning, when the school would get together for chapel. We couldn’t go to church, or even noisy restaurants before -- how would he react when a whole bunch of kids were singing, clapping, and listening to the speaker? At first, because he didn’t know the songs, he just listened. But no hands over his ears, no screaming and crying, no begging to go out; just rapt attention. In fact, he wiggled less than most of the kids there! Occasionally, he performed in front of them. His class cheered him on, and his sister’s class, the 2nd graders who remembered the silent non-responsive kid they saw when they were in kindergarten, roared with applause.
He was also making great strides academically. He understood and kept up with what was basically a 1st grade math curriculum. In fact, only a few kids knew the addition and subtraction facts better than he. He counted by 1’s, 5’s, and 10’s to 100. He could tell you how much a mixture of pennies, nickels and dimes was worth. And he also knew all the sight words and was enjoying reading centers with the other children. It was such a huge leap from what was expected of him in his previous program
What shocked me was a conversation that took place in early December. While running errands, I took Zachy with me. On the way back, we passed by his old school.
“Mommy! Mommy! Look! There’s old school!”
“Yeah, that’s your old school! Do you remember your old school?”
“NO. I was stupid at the old school.” A cold chill went down my spine.
“No Zachy, you were sick. You are NOT stupid, you are a smart boy. Ok?”
“Yeah. Zachy is smart. But I felt stupid at the old school. I had tummy owie and my brain was locked up at old school. ”
At this time, we were able to go everywhere we wanted as a family without the anxiety, fear, and depressing exhaustion of yet another attempted outing ending in failure. Eating out as a family has become really fun. It’s so awesome to see Zach and Chloe playing games on the paper and crayons they give kids. People tend to be surprised at how many supplements he has to take with his meals, but he gulps them down because he learned the hard way that he gets a stomach-ache when he chose to eat without them. The kid who used to have a super high tolerance for pain was now avoiding it, just like he should.
Zachy was thriving in school, more than succeeding with friends, and is so full of wanting to experience life. We had the most awesome, happy, social last day of school! Not only was he a model student that day, he was finally…Zachy. He was happy being himself, and had friends and people who loved him. When they look at him, they see him…not autism, because we were able to loosen autism’s grip on who he was.
Goals that we once were afraid to even hope for were reached and even surpassed. But we are not finished. Not by a long shot. As Zachy continues to recover, I find that in spite of the sacrifices of time, emotion, and money that we spent, we are recovering our lives as well. No longer are we merely “surviving” with autism, we are beating it, we are winning, and we are living life with our eyes open to all the blessings and miracles that are continuing to happen.
Yes, I believe in unicorns…and Zachy is one now, too.
Treating Autism Chart
This treatment list is being shared for educational purposes only. It is not intended as medical advice. Please seek assistance from your health provider regarding any treatments that could be available for your child based on his/her unique needs.