When I initially became concerned about Caleb’s developmental delays and the possibility of autism I immediately reached out to a sister friend of mine who’s an “Autism Mom” herself. Part of me was hoping that she’d say I was crazy but I knew her and should would never say something either way to give me false hope or to just make me feel better. Instead she would casually say “He might be but don’t focus on the diagnosis.” And in my mind I was like “WHAT DO YOU MEAN?????”
I have to focus on it. I have to plan. What does that mean? What do I do if he is? What does this mean for him? His future? What does this mean for me? The rest of my life? How will he get help? I need to make plans and make a budget and contact people! Don’t I??
I didn’t understand how I shouldn’t be focusing on the diagnosis, that is until i caught myself researching Autism service dogs. LOL. I remember texting Caleb’s godmother and telling her what i was doing and she said “Tiffany take a break! Step away from google. We are not there yet.” In that moment i understood that they were both saying “Calm down! Relax! Don’t get ahead of yourself.”
I needed to focus on getting Caleb what he needed at this moment otherwise I would fall down this never-ending tunnel of anxiety and ridiculous decisions and I had ZERO idea what I was even dealing with yet. From that day I didn’t focus on the word Autism. I focused on getting Caleb the services he needed to develop and grow into his potential regardless of any label.
None of the doctors we’d seen had mentioned autism with the exception of his speech therapist who made a note during one of his sessions. Other than that the only one who had that word in mind was ME. This maternal instinct is a funny thing. No matter how hard you don’t want to think/speak it into existence there’s something in you that knows.
On the day of our ADOS assessment (Autism Diagnostic Observation Schedule) I was ready! I gave myself a pep talk and said no matter this doesn’t change anything! I knew in my gut Caleb was different so this was just confirmation. During his early intervention session that week I told his therapist we were scheduled for our assessment and she said “Great! But so what?! If he’s autistic so what?! It just guarantees more services. There is so much more than he’s eligible for in treatment with an actual diagnosis. Caleb is smart and high functioning. He’s a beautiful normal toddler and he’s perfect.” I remembered her words as I got us ready for our appointment. I was ready!!
The assessment would last an hour, it was super informal. Caleb played with toys and ran around. The psychologist grilled Mom and I for a few hours as well as interacted with him. Caleb had no clue what was going on. He rummaged through her bags of toys, using his words like please and thank you and everyone was praising him. The doctor made note of his limited eye contact and his obsessive need to want to turn the lights on and off on us. We eventually had to move some furniture in front of the light switch to get him to focus a little. Caleb also jumped up on the kiddie table to look at himself in the mirror, making silly faces and babbling to himself, he loves a mirror!!! Caleb was very comfortable and in full Caleb mode. I, on the other hand, had a growing knot in my stomach. Every time the doctor would make a note or ask “does he always do this?” I would play it cool on the outside but on this side I was on the edge of my seat.
After an hour and half, the doctor got up from the floor with Caleb and she said “Ok, I’ve completed our assessment of Caleb and at this time I am diagnosing him with Level 2 moderate autism….” She continued to talk about what that was and what it meant but I don’t think I heard any of it. I wasn’t ready and as I broke down My Mom came over to console me, the doctor brought me tissues and Caleb’s social worker moved to him and engaged with a toy. It wasn’t until I replayed the moment in my mind days later that I realized she’d done that so he wouldn’t see me upset and I was grateful.
Although most of what she said was a blur I did focus on what she mentioned as next steps, ABA therapy, follow-up with a neurologist, contact my insurance company. Got it! In the next week or so I’d get Caleb’s official report with the documentation and the referrals but I wasn’t waiting that long. I dried my tears, loved on my baby, made the call to family and friends who’d been waiting and supporting us. Immediately the same sister friend who told me not to focus on the diagnosis sent me this link Different Levels of Autism.
I dont think I ever told her how much that meant to me. The article literally outlined everything the pyschologist had just told us, you know that part I blanked out on..LOL. As I read the article right there in the parking lot while mom and I pulled ourselves together, it all started to come back to me. It also helped to communicate his diagnosis to our family and friends who would all ask in the upcoming days “So what does this mean?” It helped me to not say the words over and over and over again that were so hard for me to hear. After reading the article and wrapping my mind around what needed to be done next, I was back online and back on the phone. I had gotten our diagnosis….now it was time to get everything and anything for Caleb to receive the best treatment.
There’s a meme I always come across online that says “You’re allowed 5 emotional minutes in a day, then you gotta be a gangsta.” It’s the story of motherhood and my life…..it was time to get gangsta.