June 16th 2001 was a wonderful day. It was on that day that we welcomed our second son Jason Christopher into the world. Jason came into the world with a full head of hair and a healthy 8 pounds, 9.5 ounces. We couldn’t be more thrilled. Everything went well at the hospital, just like it had almost 5 years before when we had our first son Dylan. We went home from the hospital and we were ready to start down this new road of having 2 children instead of just one.
Within about a day of being home, we noticed that Jason was looking a little yellow. We knew jaundice in newborns can be quite common because we had experienced it with our first son too. We called the doctor and were given the advice to keep him undressed and put him near a sunny window as much as possible. Like I said, we had been down the same road with our first child, so this was nothing new to us. What was new to us was that even after several hours of sunlight therapy a day, Jason’s color did not seem to improve, in fact, his skin and eyes were turning more yellow. Of course I called the doctor and was told not to worry and I was given more advice of what to do. By the age of 7 days, Jason’s doctor finally decided to test his bilirubin levels and the very next day, she did a follow up to make sure his levels were going down.
During this time, Jason went from being our perfect little newborn son, to a very fussy newborn. Like I said earlier, this wasn’t our first child, so I wasn’t too concerned because I know newborns can be difficult. The funny thing is that Jason during his first few hours of life seemed more mellow than his older brother had been at birth, but within a week, he was definitely a different baby than we had first met at the hospital.
As newborns go, Jason ended up being extremely difficult. He would normally start crying and screaming around noon and he would not stop until he finally fell asleep around midnight or one in the morning. We tried everything we could think of to help calm him down, but nothing helped.
During this time, Jason also would spit up about 50 times a day. Because of this, my healthy strong newborn was not keeping up with the normal weight gain that he should have. I kept in close touch with my doctor, but I was told over and over that he was fine. During his first 4 months, I also noticed that Jason was not doing any of the “normal” things that I newborn does, like arching his head up or making cooing sounds. Around 4 months old, we finally broke the cycle of Jason screaming all the time, so I thought the worst was over. Because Jason did not reach any of his milestones during the first 4 months, I had it in the back of my mind that he may always be about 4 months behind, which in the whole scheme of things would not be that big of a deal.
Unfortunately, the spitting up did continue and although we had gotten past the 12 hours a day of screaming, Jason still did not seem to be making much progress. It was basically impossible to get eye contact from Jason and he also did not seem to be making any progress toward moving around on the floor or sitting up. We did change doctors during this time and I took Jason in for a check up and voiced my concerns. Jason’s second doctor, just like the first assured me that Jason was fine and I need not be concerned.
All this time I was still concerned, but I was also confused. Obviously the doctors were the “experts”, so if they said Jason was fine, I felt like I should believe them.
A couple months went by and Jason was now 8 months and still not making progress and still not able to keep his food down. I went back to the doctor with my concerns. My beautiful boy who was in the high percentiles at birth, was now only in the 10th percentile for height and weight, but his head was in the 90th percentile. Again, Jason’s doctor told me not be concerned. According to him, Jason was just a “relaxed” baby and the spitting up issue was more of just a “laundry issue” and not anything to be concerned about. To make me feel better, the doctor told me to bring him back in a month and he would check to see how he was doing.
That next month I took Jason back to the doctor. When he was weighed and measured, he now fell below zero on the percentile chart, with his head still coming in at the 90th percentile range. It was at that visit that the doctor finally “got it” and realized there was something serious going on with my beautiful baby boy.
That visit started us on the journey of more medical test and more doctors, all this in the search to find out what was wrong with Jason. Unfortunately there were no easy answers. Never having had any experience with dealing with a child that had medical issues, I felt completely lost. We were given the name of several syndromes and illnesses that could be possibilities. I would go home and research all of these new things on the internet to learn more about them. Sometimes the things I read about would bring me to tears, thinking that this may be what my son suffering with.
At around 2 and a half years of age, we had Jason evaluated for autism. At that time, the team of doctors that did the evaluation all agreed that although educationally he may be labeled with autism down the road, they really did not think he had autism. Because of that, we kept on with our testing and researching until we got to a point where we just couldn’t figure out exactly what was wrong.
As Jason got older, his behavior really seemed to fit the characteristics of autism, but since we had tried that route earlier, we just weren’t sure. It wasn’t until Jason was 4 that I had no doubt in my mind that we were dealing with autism. Jason was nonverbal and his eye contact was poor. He had a lot of repetitive behaviors like hand flapping and turning lights off and on. He also had a fascination with fans. We took him back in for an evaluation and this time around the doctors agreed that Jason did have autism.
Having the official diagnosis gave me some peace of mind, but at the same time it brought about feelings of sadness. The one real positive thing for me though was that I now knew what direction to follow in finding Jason as much help as possible.
Jason is 5 now and our journey with him has not been easy. I am happy to say though that I am very hopeful for Jason’s future. We were told at one time that Jason may never walk. I refused to even entertain the thought of that possibility. We started Jason in physical therapy at the age of 12 months. Shortly after Jason’s second birthday, he did take his first steps and today he runs so fast that I have a difficult time keeping up with him. In fact, he now wears a special Project Lifesaver tracking bracelet from the Clark County Sheriff’s department that can help us find Jason if he disappears out of site.
Having a child with autism is not easy, but it is a blessing. The first years were incredibly stressful, but now that I know what we are dealing with, it is not as scary.
Before Jason came into our lives, we just took everything for granted. Most people who have children read the baby books and mark on the charts when their child reaches their milestones. Although it is exciting for any parent to witness these milestones, I think when someone has a “normal” progressing child, it is just expected that it will happen. Having a child with autism though, each and every milestone brings so much more joy than I ever thought possible. Our children are little miracles and despite the medical issues that we deal with, they still bring so much joy and happiness into our lives. I wouldn’t wish autism on anyone, but at the same time, dealing with autism has brought an entire new aspect into our life that has been quite incredible. People sometimes label our children as special need, but I think a more accurate label for our children is special blessings. I will do all I can to help Jason reach his God given potential, but at the same time, I wouldn’t trade him for anything. He has added more joy into our life than I would have ever believed possible. Every day brings new challenges, but also new blessings. I hope everyone who has a child with autism can experience the same joy in their special child that we have been able to experience with our son Jason.