E has always been like a bulldozer plowing through life. He developed normally and was walking at 8 months. He played normally. He babbled. It took him a long time to say mama, but he said dada, cookie, and giggle by the time he was 18 months. Then his words seemed to stop growing. He no longer could say giggle and any other words learned were jumbled sounds. For instance Grammy or Gran was Key-key and motorcycle was gee-gee-ga. We knew something was wrong so we had him evaluated by an early intervention service and we were told he had a speech delay.
His first speech therapist was awesome. She was patient and sweet. She came to our home for an hour each week and did play therapy from the time E was 2 1/2 to 3. After working with him for a few months she asked me if he always lined his toys up. I remember thinking that was an odd question. I replied that he loved trains and lined his cars or trucks up to imitate a train. She then asked if I ever had him evaluated for a developmental delay. I told her we did and were told he just had a speech delay. She then said that E didn’t make great eye contact, lined up his toys, and had poor fine motor skills and all of those things were symptoms of autism. She encouraged me to get another opinion because it’s a lot easier to treat if you catch it early. I was quite irritated with her for that statement.
However, I did get another evaluation with our public school system when he turned 3. Again, after 4 hours of testing and observation I was told that there was nothing wrong with him besides a speech delay. Although, E was still not communicating with us. He still wasn’t making eye contact. He still didn’t have good fine motor skills. He also didn’t have a good awareness of space. After a few more months of questioning everything we went to see a developmental psychologist. She did a series of tests for 20-30 minutes. Then she told us he had autism. This was June of 2015 and E was 3 1/2.
To this day I’m disappointed in the testing and consultation. I do not think that psychologist did a good job. She was quick and matter of fact. Your kid has mild autism. Here’s a list of speech and aba therapists in your area. Here’s a referral stating his diagnosis. Good luck. That was it. Although her diagnosis was accurate, she wasn’t very warm for a person delivering heartbreaking news to a young family. There was a level of peace of finally having a diagnosis which helped us receive services for him, but autism is a difficult diagnosis to come to terms with.
After receiving the diagnosis of autism I spent days calling every number on the list I was given. I was told that there was a 6 month wait list for aba therapy. That was devastating. I was told early intervention was key and I had to wait 6 months?! Then there was the fact that our insurance didn’t cover aba therapy. Lovely. E’s recommended aba therapy was 20 hours a week. Billed at $50 an hour. That meant that we would have to pay $1,000 a week to help our child- out of pocket.
I knew there had to be another way. We couldn’t afford the recommended therapies. Speech already cost us $200 out of pocket every month- with insurance. So, I researched. Day after day I spent hours reading anything and everything related to affording autism therapies. I finally found a blog that another autism mom wrote with an attached list of grants and scholarships. I applied for two grants (you can find them here http://www.autismsupportnetwork.com/resources/autism-grants-united-states) and a tax credit scholarship (the gardiner scholarship). I also found a local organization that offered free occupational therapy (http://floridaelks.org/helping-children-develop-grow). Because our insurance coverage for special needs was terrible (although we paid $900 a month for insurance coverage) we received both grants and the scholarship. Along with the OT therapy. What a whirlwind that was. I went from being devastated and stressed because I couldn’t afford to help my child to overwhelmingly thankful that awesome organizations exist to help families like ours.