September 04, 2013
Our firstborn, Wesley was born in May 2004. My pregnancy was pretty normal, except for a little mild preterm labor in my third trimester. He was born at 36 ½ weeks and was healthy. His APGAR scores were great! He was treated like a full-term baby and all was well. He was a great baby and was developing normally. Wesley even had a few words before his first birthday!
We didn’t really notice that anything was wrong except that he wasn’t talking as much as he should have been. The doctors just kept saying, “Well he’s a boy, and boys talk later.” They just kept kind of pushing us aside.
When Wesley was two, his baby sister was born. When he was almost 2 ½, we finally got a hearing test. The results were normal. Shortly after that, we had a developmental evaluation. His scores weren’t that great, which was a total shock for me! No one wants to hear how far behind their child is. It was totally heartbreaking and a day I will remember always. He scored as low as 12-18 months in some categories. I had been in total denial. From the report: “Wesley is exhibiting some global delays with his most significant in attention span and speech and language. At this time I would recommend that he be referred for a neurological evaluation due to his deficits with attention and inability to attend to tasks or attend to auditory verbal information. I would recommend that Wesley be put in an intervention program that is fairly structured and a strong emphasis on speech and language.”
That’s when I started realizing that the things he was doing weren’t normal and were signs of something else going on. He was obsessed with opening and closing doors, cupboards, drawers, etc. He was afraid of loud noises (forget using the hand dryer in public bathrooms!). He spun a lot. He had a toy that would spin and make music and he would spin with it. He also had a toy that spun balls and he would sit and play with that for the longest time. He flapped his arms when he was excited. He was very independent and would be fine entertaining himself for long periods of time.
Wesley started therapy less than a month later. One hour of speech, ½-hour of physical therapy, one hour of occupational therapy, and about four hours of ABA. Just two weeks into speech therapy, he was saying a lot of two-word sentences and even a three-word sentence! He was doing well in therapy and I was getting great reports all the time.
A short time later, we had to have an EEG done before we could see a neurologist. The report came back normal…whew! But three months shy of Wesley’s 3rd birthday, he was diagnosed with Autism, however, he was doing amazing in therapy and the neurologist had high hopes and a great outlook for him.
At that time, we were only doing behavior therapy and hadn’t started any biomedical treatment. He was in the public school preschool program, and it was about that time that I attended a TACA meeting, which happened to be the school district roundtable. We learned a ton! We eventually pulled Wesley out of the public program and put him into a private preschool. At that point, he was really aggressive and we were still working on his social skills. He had to have an aide with him while at school. He worked with our wonderful aide at school five days a week and at home as well. He was still seeing a physical therapist and going to speech therapy.
Then we started the GFCF diet. It made a world of difference with Wesley’s behavior and speech. He talked more and was more engaged with us! He was also much more outgoing. We also saw our first DAN doctor, which is when we found out that Wesley had yeast. He was put on Diflucan, Glutathione and a number of vitamins. We also did hyperbaric oxygen treatment.
Life was tough with a baby and a child that was newly diagnosed. I feel like my daughter’s infant years and my son’s toddler years were taken away from me. We were so busy going to therapy and doctor appointments, we didn’t have time to just be a “normal” family. Those years are tough for me to think back on and are sort of a big blur. I am saddened by them, but I wouldn’t change anything that we did to get our boy back!
Through all of our determination, and especially Wesley’s hard work, we’re now in a wonderful place. He is in the 4th grade. Last year, he got straight A’s! He does great in school, and he hasn’t had an aide or any therapy since kindergarten! Wesley was undiagnosed when he was in Kindergarten. If I tell people about his prior diagnosis, no one believes me! He has come so far and is such a typical big brother to his sister. I hope this gives some hope to families who are going through what we once did -- please don’t ever give up!