Updated: Dec 31, 2021
Part 1: Son On The Spectrum (Part 1) Part 3: Son On The Spectrum (Part 3) "I quickly buckled Gio into his car seat, got into my seat and started the engine. By now, the tears were everywhere and I had no idea how I would be able to safely drive us back home. I called my husband ("K") but was barely able to speak."
I'm not sure how many of my words pushed through my breaking voice and tears. K listened, was calm, made sense of the nearly incoherent stream of words that poured out. Told me that it would be ok, and that we would talk everything through when we both got home. I eventually regained composure and began to drive. I recalled everything I said in that office, wondering if I presented too many concerns about Gio and had brought unnecessary worry onto myself. Maybe the doctor was simply acting based on everything I said and nothing of what he had observed. Perhaps this was all in my mind, and I was bringing the family down this confusing road because of my overthinking nature. I tried to shut off the whirlwind of thoughts, but the overwhelming, nagging feeling was that something was not quite right with my baby and I needed to know.
Thankfully, not long after I returned home, my husband arrived. Immediately my eyes welled up again and we sat on the couch, me giving him a play-by-play of what had occurred at the doctor's office that day. We hugged Gio so tight, and both cried a little. We prayed, asking God for direction and strength, knowing that if we really were to walk this road, we could only do it with Him at our side.
The very next day we called the developmental paediatrician and made an appointment, then also booked a flight for my mom to be in the country at the time of the assessment. I just knew I would need her support. She had been with us through every milestone thus far, and we quickly realized that if autism was indeed going to be part of our lives, we would need to rely on our family members' understanding and support. My sis-in-law was also aware of our autism concerns and committed from the very beginning to walk through the ups and downs of this road with us, should that be the outcome.
During the few weeks leading up to the assessment, we tried so hard to "prep" Gio for his first big test! He already had learned on his own all the letters of the alphabet, numbers, colours, shapes and animal sounds, though his articulation was so poor that only close relatives understood. So we worked on some big areas that were difficult for him - pointing, following a gesture, imitation and articulation. We took frequent walks outside while teaching him to point at flowers, at birds, at planes, and to name everything in sight. We taught him to follow our own pointed fingers, noting with each lesson how much effort it took to teach the things that other children quickly grasp. We clapped our hands together, then encouraged him to do the same. We played "head, shoulders, knees & toes", made silly faces for him to mimic... all sorts of fun and engaging imitation games.
K and I knew we needed God to guide us as we learned more about Gio and to calm our anxiety as we wondered what the future would hold.
During these weeks we also spent a lot of time in research. We told close relatives what we were facing and together we read and shared many articles, trying to do our own sort of pre-diagnosis as we impatiently waited. We also spent a lot of time in prayer. K and I knew we needed God to guide us as we learned more about Gio and to calm our anxiety as we wondered what the future would hold.
Finally, assessment day had arrived. We (my husband, mom & sis in law and I) headed to the doctor's office, very somber in mood and with little words. Though none of us said so outright, I think we all felt that the likelihood of him getting a diagnosis of autism was significant. Shortly after we had arrived, my husband and I got called into the office, while my mom and sis-in-law remained in the waiting area. Dr R was very pleasant. She asked us several questions and had us complete several forms. She "played" with Gio for about an hour. She brought out lots of pretend play toys and cause & effect toys, like balloons, dolls and figurines for a very interactive play session. Giovanni seemed to be enjoying it. K & I sat a bit apprehensively, trying to be quiet observers but interjecting often as we tried to get Gio to be more willing to display the skills we were sure he possessed. We desperately wanted him to pass each test she put before him, but several times it felt like odds were against us. "Come on, Gio, you know what the spoon is for. Feed the dolly with it.". "Come on Gio, look at her, she's speaking to you.". "Gio, are you listening? She said to throw the ball like this! Over your head" we said, as we made subtle gestures to him. When he did indeed do what was requested, we cheered as if we were on a football field, hoping our high-pitched voices would suddenly make all his milestones click into gear so that he could simply pass this assessment that seemed to determine the course of all our lives.
Finally, after 3 hours in her office, it was over. I was mentally fatigued and anxious. She summarized her findings and began to speak to us about them, but I only saw her mouth moving. I was listening out for one word - autism, but it was taking really long to hear it. She spoke about screening tools, delays and interventions, but she just did not say the word I was waiting for. I needed to hear her say it so there was no room to second guess. I continued to listen for it, but after about 20 minutes of reviewing each task and Gio's performance, she began to dismiss us with referral letters for speech and occupational therapy in hand. I was more confused than when we had walked in 3 hours before. I glanced at my husband and caught his gaze and I could tell we were having the same thoughts. Is she going to tell us, or what? I could not let the appointment end this way and go home to mental torture. I decided to address the elephant in the room.
"Excuse me, does he have... a-autism?"
She looked at me, said nothing. Raised her right hand and gave a slight flick of her palm.
"Sorry, what do you mean?"
"A score of above 2 would indicate autism, and he scored 2.5. This indicates he is "at risk", but he's only 2. We can't say for certain just yet."
She still didn't use the word, but her words stung and rang through my head quickly and repeatedly. "2.5, not 2", I kept thinking. He had scored within the range for Autism Spectrum Disorder. He was not off the spectrum. He was on the spectrum.
I did not have the answers to any of these, but what I was certain of is that I did indeed have a child on the spectrum.
My husband thanked her pleasantly, promised to take her recommendations and return within one year. He led the way to leave the room, while I held my baby boy and walked out, unable to look my mom or sis-in-law in the eye. K motioned to them that we were ready to leave. A sense of loss and confusion overwhelmed me as I walked outside towards the car. The evening sun was fading and the dim, dark surroundings reflected the emotions of my heart. I did not cry, and I was unable to speak or look at anyone for too long. My world felt bleak. Several questions swirled through my mind. What would life be like for my precious boy? Would he ever be independent? Was I prepared to be the mom that he would need? I did not have the answers to any of these, but what I was certain of is that I did indeed have a child on the spectrum.
To be continued...