The very first week of life when Brendan came home from the hospital he had what I thought was colic. He seemed to always just cry and not much would sooth him. During the first couple weeks he was extremely constipated because he went almost 2 weeks without a bowel movement. I tried the grape juice, prune juice gas drops nothing was working. We then we tried the dark Karo syrup in each of his bottles. That definitely seemed to work to get things moving. But he still seemed extremely uncomfortable and still had the colic. I was extremely concerned with the amount of Karo syrup I had to put in each bottle for him to have a bowel movement. This stuff was just pure sugar. A couple months have gone by and the Karo syrup was starting to not work anyone. We then proceed to try every single kind of formula that we could buy. That seemed to just make things worse for him. Some of the formulas like the soy based definitely made him extremely sick. Other formulas would give him horrible diarrhea. Then he started to get these horrible body rashes, so then we were referred to a gastroenterologist at Phoenix Children's Hospital. Brendan was now almost 5 months old. As sick as he was the first couple months he still some how was gaining weight. His doctors honestly couldn't even believe his size considering he couldn't tolerate any of the formulas. His GI doctor had decided to put him on a prescription formula called Neocate. It was free of the seven major food groups, soy, dairy, eggs, gluten, peanuts, shellfish, and wheat. Well that was a game changer for us. Brendan finally seemed to be colic free and just seemed to be a happier baby without any reactions. The first couple months of his life just seemed like one big blur to me. But now he was 5 months and we finally had a formula that agreed with his body.
I could now function and enjoy my baby because he wasn't always crying. But then he faced another medical issue. He was born with a pretty awkward shaped head so at 5.5 months he was fitted for a helmet to reshape his head and to help his torticollis that he was diagnosed with. So we now were trying to adjust to wearing a helmet for 22 hours a day. He actual did very well adjusting to the helmet. He ended up needing a second helmet because it wasn't corrected with just the one. So he wore both helmets for a total of 6 months from 6-12 months.
If so far he hadn't overcome enough hurdles he was faced with another medical issue. When he was born he had what was called a Chordee. This was a congenital condition resulting from abnormal development of the penis. We found this out shortly after birth, but they didn't want to do the surgery until he was 6 months old. So at 7 months old he went in for surgery and had the chordee repair done. The surgery took about 3 hours and within 2 weeks or so he was healed and back to normal.
During all this time he had started to fall behind in his milestones. My first thoughts were well his helmet was holding him back from sitting up, rolling over and other milestones that he should have reached by 6-7 months old. So I just started to pay really close attention to him. As a couple months passed I started to notice a lot more "Strange" characteristics. I started to take notes and write down anything that I thought was not really normal for babies to do. I had decided to not even tell my husband about any of the concerns I started to have. I also started to video him on top of taking notes because I thought when I do tell my husband I can show him video of the things I was talking about. By the time Brendan was 9 months old my list of concerns had seemed to become significantly large. Here are just a few of them:
-never makes eye contact with anybody
-always rotates hands and feet
-doesn't talk or babble just makes moaning sounds
-does not respond to his name
-will not self feed
-rejects all foods solid or pureed
-doesn't clap or wave
-isn"t crawling
-will not cuddle or let you hold him
-always tenses his legs and arms
-hates when his hands & fingers are touched
(please see photo below of my full list)
I had started to google some of the concerns on my list and "autism" seemed to keep coming up. I had come across a self assessment test that I could take that would tell you if your child was on the spectrum. I took the test and my results told me that my child was on the severe end of the autism spectrum. I honestly couldn't even believe what I was reading. I kept thinking he is to young and there is no way he has autism at 9 months old. I continued to google and research everything about autism. I was reading that a lot of kids with autism have GI gut issues just like Brendan was having. Also his head and penis issues started to make me think that those also played a part in the autism clue's. Those things just weren't developed all the way along with his gut not being fully developed. So many things started to make sense. Well my nightmare started to seem like more of a reality. It was time I told my husband. I was so scared to tell him because I thought he is going to be mad that I have kept this to myself for the last couple months. I sat my husband down and showed him the videos I had taken and then showed him my list of concerns. He was pretty quite and didn't say much other than lets not jump to conclusions or assume anything. He suggested that we make an appointment with his pediatrician and discuss our concerns with her. Over the next couple days my husband started to pay more attention to Brendan and watched him closely. He came to me and was extremely upset because he couldn't believe that he hadn't noticed these things like I did and now he was seeing all the concerns I was talking about after our talk. My husband works two jobs to support us so honestly there is no way he would have seen the things I was seeing.
The following week we went to see his pediatrician. As we were headed to her office I had told my husband that if she thinks I am just a crazy over protected parent then we were going somewhere else for a second opinion. We sat down with his pediatrician and showed her the videos and went over the list I had made of my concerns. Brendan wasn't having a very good day but I guess that was a good thing so she could see him this way. Well once again my nightmare was becoming a reality. She told us that she definitely thought he was showing a lot of signs of having autism. She then referred us to a developmental pediatrician because they are the ones that can give the diagnoses.
We were referred to the Melmed Center but unfortunately there was a 6 month wait list to see any doctor there. But they told us because Brendan was only 9 months old that they would move us to the front of the wait list and when they would get a cancellation they would call us first. Just a couple weeks later on March 12th 2013 at noon I got the call saying they had a cancellation at 1:30 that day. Of course I said we will be there. My anxiety and nerves started taking over. I was so scared because I knew my life was about to change. We meet with the doctor and did a lot of just answering questions that she asked us. After we did that she did an evaluation on Brendan. She also agreed that Brendan was showing all the signs of having autism. So because he was only 10 months old his doctor wanted to give him the "at risk of autism diagnosis". She wanted us to start him in therapy right away for the next 3 months. Over the next 3 months Brendan received speech, occupational therapy, feeding therapy and physical therapy. Well unfortunately he seemed to be getting worse and not better. We went back to the Melmed Center for our 3 month check up. Brendan was now 13 months old and his doctor now felt comfortable with giving him "Autism Spectrum Disorder" diagnosis. Even though I knew this was coming hearing those words coming out of your doctors mouth was absolutly the worst feeling I have ever gone through so far in my life. There really isn't any words to explain the feeling I felt at that moment. But what I did know is that I was going to do everything I could to make sure my son was getting all the help he could get. From that moment I have been his voice and I have had to do so much fighting but he is now almost 3 years old and he has been getting 46 hours of therapy a week for almost the last 2 years. He has made such incredible progress but he still has a long road ahead of him. The best advice I can give any parent is always listen to your gut and be the loudest voice for your child! Happy Autism Awareness month!
