It all began when Aiden was about 1.5 years old. Now, bear in mind there is a 9 year gap between my kids... just enough for me to forget when certain milestones happen and such. His pediatrician had a suspicion based mainly on his lack of talking (and probably some other red flags unbeknownst to me, I’m sure). We received early intervention services (including speech therapy) and he started at a preschool for kiddos with a special need or extra help.
Around age 2, I finally had the courage to call the number for Nationwide Children’s Hospital to have him tested for Autism Spectrum Disorder. Now, I’d had the phone number in my possession for at least 6 months but didn’t have the courage to call... even though I knew that once I did call the appointment would be a minimum of 6 months out. Don’t judge me - I wasn’t ready to walk that path yet. Anyways, I finally called and had the appointment set for Fall of 2014.
During this time, Aiden transitioned to a county preschool that integrated disabled & non-disabled kiddos. It was also during this time that my daughter was diagnosed with Type 1 Diabetes (read more HERE). Our hands were full but we were handling it.
Testing time came. I went to the first appointment at the Autism Center for Nationwide Children’s Hospital without hubby, because as I understood it, this would be when the testing was done. We would return the following week and go over the results. The testing is done by a team of people - an MD, psychologist, social worker, etc. I was not present in the room when testing was done (but could monitor on CCTV from the psychiatrist’s office). I remember the team taking him out of the room to begin the testing, and I was left in the room by myself. After a while, someone came back in the room to check in, and I don’t recall if I asked or if it was offered up, but they said that of course they’d have to wait for the test results, but for sure he’s got Autism. I went numb.
I’m glad they left me in the room by myself right after that because I broke down. Having your fears confirmed was earth shattering. This wasn’t something I could fix with a medicine and a couple days of rest. This wasn’t something you could manage with insulin. [At the time of the testing, it was about 2 months after my daughter being diagnosed with Type 1 Diabetes]. I was a fish out of water.
I don’t recall much, other than calling hubby and my BFF and sobbing, and I remember hugging Aiden after he got back. I remember crying for most of the 1.5 hour trip back home. The following week, we went over the test results with the Psychiatrist. Long story short, Aiden was on the moderate to severe scale [not that I debate his diagnosis, but its worth mentioning that he needed glasses to correct an esotropia and he was 3 years old and had a hard time comprehending... yeah I know the test was probably scaled down to abilities for a 3 year old, but let me have these ones ok?? :P ]
I shared his diagnosis with the preschool, and he started to receive OT through the school, in addition to the ST he was already getting (prior to this, we had a several months where we paid for his Speech therapy and it was EXPENSIVE, even after the insurance paid). He saw an ophthalmologist and got his glasses (later with bifocals), and he once he got used to them, he was EXCELLENT with them. Since then, we’ve only had a couple pairs break, and those were only at the hinge of the arms... pretty good if you ask me!). He was continuing to make progress all throughout, even if it was small.
He didn’t flap his arms, he didn’t rock back and forth or have any “stereotypical” Autism signs [which I now know them to be self regulation tools and should NEVER be stopped!]. He stacked EVERYTHING - I mean EVERYTHING... if it could be stacked, Aiden would do it. We say he’s going to become an architect :P He had his quirks too - things that we weren’t sure if it was Autism or if it was just quirks. The main red flag was that he had a very delayed speech - we weren’t sure if he would ever speak. You don’t know how much that breaks a Momma’s (or Daddy’s) heart until you’ve been down that path. He also covered his ears at loud noises and when he was uncomfortable. We tried to be proactive and get a hearing test, but all efforts were met with resistance from Mr Aiden. He refused everything we tried locally until the techs told us the only option would be a test done at a Children’s hospital, where he’d have to be put in a twilight sleep. Aaaaand that’s where I drew the line... I was merely trying to eliminate things that could be causing the speech delay, and not one doctor had suspected a hearing issue, so I stopped that avenue.
We had not known anyone on the Spectrum before diagnosis. Because of the amazing people God placed on our path, when Aiden was diagnosed we were already doing almost everything that they recommended we do.
I do think that grieving the loss of “normal“ is needed in any diagnosis. I sure did that - it wasn’t until about 4 months later that I was ready to make an announcement to those not in our immediate family. Autism has (and will continue) taught us sooooo much that I wouldn’t trade for the world. I truly treasure the little moments, the small victories. I know the value of acceptance, unconditional love, and friendship. I know that sometimes bravery costs SO MUCH to some, and to honor that. I know that what you see on the surface is not always what’s going on. And I am so thankful to Autism for all of these.
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