The content of this post will start at the beginning up until the day we got his diagnosis.
This is Silas’ journey…
When Silas was born, I knew that he would be an amazingly unique child. As most mothers do when they see their child for the first time I immediately fell in love with this alien-like creature. Isn’t it funny that your child is all covered in goo and nasty yuck but you just can’t wait to hold them? From that day on I knew that my life was going to be crazy but exciting. My expectations have definitely held true till this day.
Silas was such a wonderful baby. Once I got him on a sleep schedule he slept better than I did. He was a super happy and playful baby. You could almost always see a smile on his face. As most of you know I took a million pictures of him! As Silas was growing and progressing day-by-day, I began to notice that he was not following the typical timeline for most children. I started to get concerned when he didn’t even try to hold his head up while on his stomach. If I could even get him to stay on his stomach for more than 10 seconds without him freaking out. It took months for him to lay on his stomach and be able to push himself up. Rolling over took even longer. A lot longer than other children. I tried to tell myself that it wasn’t serious. Silas was just taking his time to get to the “milestones” but he would get there.
Silas attended the Child Development Center on base while I was stationed at Barksdale. It was a very depressing environment for me because I saw how right I was about being concerned. I saw how much the other children in his class were doing compared to where he was. The worst part of him going there, at least to me, was having to fill out the age questionnaires. If you don’t know what that is, it is a bunch of questions listed out according to the age of the child and the activities the child should be able to perform. (agesandstages.com) You go through each one and say yes, no, or not able. Filling out those answers made me cry every single time. Having to mark that Silas was not doing something or unable to perform an activity broke my heart with each mark in the circle I made. Unfortunately, almost every single answer was one of those choices. By the end I was one big sobbing, snotty mess.
Those dang questions kept me up so many nights as I laid in bed. All I could think about was what other children Silas’ age were doing and what he wasn’t doing. I knew where he should be at on the milestones but wasn’t even close. I tried my best to take things in stride though. I was very concerned. The doctors on base kept telling me I had nothing to worry about.
Things didn’t really ever progress though. Silas didn’t sit up unsupported until he was 9-10 months old. He started losing his eye contact. He was flapping his arms and legs like crazy. He stared blankly at objects, especially the ceiling fan, for very long periods of time. He did not like the way certain objects, food, and substances felt. He was having reflux, constipation, and reoccurring ear infections. When going to the doctors they just put a band-aid on all of his “symptoms” and would never look into what was actually causing all of these issues. I was just an “overly concerned” mother. Feeding him was a nightmare. He was no fan of solid foods. Silas didn’t crawl until after he was a year old. He said his first word around that time as well. I believe it was da-da. Then we moved here to California thanks to the Air Force.
I thought maybe things would change with a new place to live with new experiences. Lucky for us, he got an amazing pediatrician. She listened to my concerns and suggested I look into possibly having him evaluated for…you guessed it, Autism.
I went through a ridiculous and painful process of having my insurance approve all of the authorizations for speech therapy, occupational therapy, physical therapy, child development specialists, gastroenterology specialist, genetics, neurology, and a psychologist. It took me 6 months to get approval to have the regional center come out and do an initial evaluation. Based off of all of my concerns (more like me saying what I wanted), the case worker recommended we have speech therapy, occupational therapy (OT), physical therapy (PT), and a child development specialist. She seemed very surprised that I had already prepared myself for what was ahead. I had done a lot of research on the internet and read as many things as possible.
We started all of the four services listed above in April 2012. Once a week we would go to speech and then OT. The PT and child development therapist would come to our house. After a few sessions of the PT, Silas just started walking out of nowhere. He was 18 months old by this time. Obviously, since Silas was now fully mobile he no longer required this therapy. The other therapies continued on. The speech therapy seemed to be very productive once we finally got Silas in a routine of going there and not throwing a tantrum the entire hour. The speech therapist was very helpful and knowledgeable. She was able to figure out what worked best for Silas and was actually able to get him to comply with requests. The occupational therapy was the complete opposite. That therapist couldn’t get Silas to listen to her in any way, shape, or form. He ran over her and did whatever he wanted to do. Usually it was me making him do the activities she had planned. Needless to say, we didn’t stay with her very long. The child development specialist only started coming out monthly because apparently I was already doing the activities she would have him do. So after a few visits I told her to stop coming since she was basically just watching Silas and getting paid for it.
We continued on with speech for a few more months but stopped in preparation for the evaluation that would be performed at the M.I.N.D. Institute in Sacramento. It had taken me an entire year to finally get that authorization approved and the date scheduled. I had almost given up hope in trying to get Tricare to stop denying me.
This is when I finally got the “official” diagnosis. All of the therapists and doctors Silas had already seen collectively told me what I was about hear. On August 8, 2012 Silas was diagnosed with Autistic Disorder, Mixed Expressive-Receptive Language Disorder, and Intellectual Disability – Severity Unspecified.
Autism Speaks is a great resource for information. I will list more sites once I figure out where the heck I put them as well as go into more detail in my next post.