The Long Road AheadAs we close April, Autism Awareness Month, I thought it appropriate to end it with a beginning. This is the first in the series of articles written by Kari, a mother of two boys, including a 10 year old son who was diagnosed with Autism. When Kari approached me with her compelling story, I asked if she would be willing to disclose it so that other parents could potentially learn from the path that she has taken. The Mt Sinai Children's Health & Environment Center, has recently published a List of the Top 10 Chemicals Suspected to Cause Autism and Learning Disablilities. The CDC has reported a 78% increase in reported cases of Autism Spectrum Disorder since 2002. This rapid increase not only indicates that many more lives are touched by this disorder, but that there is more than genetics involved -- like the environment and perhaps how food is manufactured.
I thank Kari for her willingness to let us into her life, and take us through her journey from discovery to what has helped her son thrive.
-elisabeth veltman
KARI'S STORY - In her own words
Proud.
If I had to choose one word today to describe my feelings about my oldest child, it would be "proud". My son will be turning ten in just a few short months, and six years ago, a few months before his fourth birthday, he was diagnosed with autism.
Like most mothers, I sit here in amazement as I think about how quickly the time has passed. Unlike most mothers, however, the words to describe my feelings about my son and his condition throughout most of his childhood would be drastically different than theirs would be. Now, I choose, "Proud", because I've seen what he has accomplished. But for many years, "Worried", "Frustrated", "Angry", "Defeated", "Determined", and "Confident" would have been much more accurate words.
I feel that our story is unique. A lot of things fell into place for us. It's a story I've been wanting to share for years, but never knew how. I always thought that my son should be the one to tell his story someday, if he chose to. At this point, he knows about his diagnosis, and recovery, but he isn't ready. Because I feel like his story could help others, I have decided to tell it. I promised him that I would respect his privacy, so for that reason, I won't be using his real name.
SUBTLE WARNING SIGNS
It wasn't until the time Caden was about two years old that I started to worry. Before then, I had plenty of excuses for why he wasn't talking. He was incredibly agile and I remember being told that kids put a lot of their focus into one area of development at a time. From the time Caden started walking at 9 months, he was as steady as they come. I don't ever remember bandaging a skinned knee. I can clearly remember him running down the hill in our neighborhood to go trick-or-treating at 15 months. He was always on the go, and I guess I just assumed that he was too busy to talk. There were warning signs, but his pediatrician didn't seem concerned at all. At his one year well check-up, I was asked if Caden was pointing. I told the doctor that he wasn't, and he just shrugged it off and said, “Well, you need to work on that”. Did he think I hadn't been pointing and trying to teach Caden all along? I guess not. He didn't seem worried, though, so neither was I.
By the time Caden was two, words were starting to come. I can't remember how many he had, but there were just a few. He was, however, developing some other skills that made it clear to us that he was very smart. He loved to spend time in our driveway having me write the alphabet repeatedly. He would say “A” and I knew what to do. I was in my third trimester of my second pregnancy and I swear I spent that entire summer bent over drawing with sidewalk chalk. If I wasn't writing the alphabet, I was drawing shapes. I would draw everything I could think of and then shout one out to him and he would happily run to it. My driveway was a colorful mess and my neighbors were so entertained by Caden's abilities. I was still perfectly content with my little guy's development.
RED FLAGS
It was also around this time, during my second pregnancy, that I started to worry about Caden's behavior. It was clear that he couldn't understand most of what we were saying, so there was no explaining anything to him. He couldn't follow directions and he couldn't be reasoned with at all. We spent a lot of time that summer and fall playing outside with the other neighborhood children. Well, when I say “playing with” I really mean “playing near”. Caden rarely acknowledged the other children. He was much more content to lay on their driveway, rolling cars and trucks back and forth. It was a great neighborhood with tons of kids. Caden was the youngest so I didn't realize at the time that this lack of interest in other children should have been a red flag. What I did realize, however, was that the kid was getting to be a real handful. Every single time that it was time to go home, he threw tantrums so violent that one of the neighborhood dads had to carry him home for me. He was so big and strong for his age and too much for me to restrain at the end of my pregnancy. I was growing more and more concerned about how I was going to handle Caden AND his new brother who would be arriving very soon.
Caden was 27 months old when Nolan arrived nearly a month early. Aside from the expected chaos of a house with a toddler and a newborn, the transition went fairly well for Caden. There were no signs of jealousy or anything out of the ordinary. He just went about his business as usual for the most part. I remember that he would get a bit irritated when Nolan would cry, but luckily, Nolan was a pretty easy baby in those early days. We were lucky to have family come stay with us to help for a few weeks. By the time we were on our own, it was nearing the end of fall, so we pretty much just stayed cozy inside. This was fine by me because I wasn't sure how I would handle the “time to go home tantrum” that had become all too familiar. It was rare for me to venture out with both kids by myself. I would often wait until my husband was home in the evenings before heading out to the store or to do much of anything. I was also incapable of getting Caden to nap. He still needed a nap, but he just couldn't calm himself and I didn't have the time to lay down with him and help him relax and drift to sleep. My husband was a real savior during that phase and would drive home from work during his lunch break to help me with this.
My confidence as a mother was starting to suffer and I was starting to question why my day-to-day life seemed so much harder than the lives of the other mothers I talked to.
THE REALIZATION
One day stands out in my mind as being a turning point for me. I had taken the boys to the pediatrician where Nolan, who was about five months old, was diagnosed with an ear infection. I decided to stop at Wal-Mart on the way home to pick up his prescription, instead of waiting for my husband to pick it up on his way home from work. What a mistake! We had to wait about 20 minutes for the prescription to be prepared, so we picked up a few groceries. During this time, Nolan started to get extremely fussy. The kid was absolutely screeching! He was screaming and crying in agony and that prescription couldn't get ready fast enough. I regretted my attempt to multitask as I looked at the check-out lines, but decided not to abandon my half full cart and make a run for it. As we stood in line, I picked up the baby in an attempt to comfort him and it was at that very moment, possibly sensing my inability to do anything about it, that Caden started picking up my groceries and angrily hurling them. Produce on the floor. Canned goods at people's heads. It was pure chaos and I must have looked like a deer in the headlights. I fought to get Nolan back into the cart quickly, while simultaneously trying to shield him from Caden AND pay for my groceries. It was at that moment that an older couple approached me and insisted on helping. I'm not one to accept help from strangers, but at that moment, my life was falling apart and I was desperate. My child was out of control and there was absolutely nothing I could do about it. They took over for me. They pushed my cart full of groceries and crying infant to my car as I wrestled Caden through the parking lot. By that point I was sobbing. I somehow managed to get both boys into the car, drove out of the parking lot, but had to pull off the road. I was shaking, frantic and scared. I called my husband and told him that I needed help.
Not just his help in that moment, but I needed help with Caden.
This couldn't be right.
Read Part II of Kari's story, "So This is Autism"
OTHER LINKS ABOUT AUTISM
Why Children with Autism are Often Picky Eaters (by Melanie Potock, MA, CCC-SLP)