Our autism story started the day our son, our first born child, was born. I had no idea what it was like to be a parent, let alone an autism parent. I didn’t know “normal” from abnormal.
You don’t know what you don’t know.
Our lil man was not talking at age 2, he had said a few things like “all done”, “good”. But then they were being said less and less. When our son was not hitting milestones it was easy to pass it off as him reaching them at his own pace. At the 2 year well child visit with our pediatrician, we brought up the lack of speech. The pediatrician recommended getting in touch with our school district for an evaluation for ECFE.
At this time there was no mention of autism, possibly a developmental delay.
We went through the in-home evaluations with the school and it was determined that lil man had a developmental delay. Just a classification, no specific diagnosis.
The school started us with an in-home ESFE teacher. We worked on speech, motor skills, and life skills. Cheryl was wonderful and we will always be grateful to have had her in our lives! Cheryl was the first to suggest autism to us. And I immediately blew her off.
She is not talking about my son.
Around this time lil man started clenching his fists. It was very random, it occurred one day and didn’t stop. We could not get his fists unclenched under any circumstances. He would hold his sippie with the clenched fists, and he expected us to feed him so he didn’t have to hold a fork. For the first week, we thought it was ok. It was something silly he was doing. However, our ECFE teacher was so concerned, so we decided to be cautious and make a doctor’s appointment. Our pediatrician wasn’t available so we saw another physician who was immediately concerned. She personally made a call to a neurology clinic for us to be seen in a couple days. We started to get nervous but remained hopeful.
The day came for the neurology appointment. The neurologist was very calm and just observed lil man as we hung out in the exam room. He concluded, it was just a phase, no neurological signs or symptoms present. And when we brought up autism he immediately blew us off. The neurologist did not believe the lack of speech and the fist clenching could be related.
After a few weeks, the fist clenching became less and less. Pretty soon lil man moved on.
Around the two and a half year old mark we went in to our pediatrician. We discussed our concerns, as well as the concerns of the ECFE teacher. Our pediatrician referred us to a Developmental Pediatrician at Children’s Minneapolis. I made the call and was advised it would be a 9-month wait to get an appointment. In the meantime, a thick packet of evaluations needed to be completed and mailed back. While we waited, lil man was switched from ECFE in-home to an ECSE (Early Childhood Special Education) classroom at our elementary school. He turned 3 during the wait. Also, during those nine months we went through IVF for the second time and got pregnant with baby #2. We went to Florida on vacation to play on the beach.
Finally, the day came. March 3, 2017.
As we headed to our 4 hour evaluation appointment we held our breath. The developmental pediatrician asked a heap of questions, observed lil man, and filled out more evaluations with us. About an hour left of the appointment she delivered the news, I believe he has autism. She went on to explain the new “levels” they use when categorizing autism. Lil man is a level 2 based on the level of services needed. For an hour we listened in a fog. Start him with speech therapy, occupational therapy, get him on a waitlist for autism day treatment, continue with ECSE. We were given a list of resources, books to read, and told to set up a follow-up in 3 months.
As we buckled lil man into the car to leave the tears formed. We had a long car ride, we were headed out of town for the weekend. It gave us time to process. In those four hours, we experienced all the emotions, anger, fear, relief, appreciation, sadness, surprise.
