The A-word…part 2

In so many moments of so many days I let my mind wander to a different time. A time that was less complicated. A time that was not filled with so many schedules. A time without a revolving door at the front of my house. A time when I was just a parent; and Grayson was just a kid. I think back to the months just after he was born. A time filled with so many new things: first smiles, first foods, first laughs, first roll-overs. Every moment of life was so filled with joy; so full of love. I saw Grayson’s whole life before me. I knew that he would be loved. I knew that his life would be happy and full. I felt blessed to go along on the journey with him; to guide him and love him and support him. I saw his whole life; and I saw mine too. I was Grayson’s mommy. I would go where he would go. I would go where he needed me to go. And so, we went.

Talking about autism in the “what-if” sense was terrifying. And for the entire year that Grayson was 2 this is exactly what we were doing. What if? What if it was? What if it wasn’t? In the months leading up to our appointment at the diagnostic center I seemed to grow more and more un-nerved with each passing day. I became hyper-aware of all of the little moments in the course of a day when Grayson would struggle through his speech. At times I even felt like he was losing words that I was certain he had previously mastered. I got in the habit of recording a list of his words at the time he began using them. I would reference back to that list to make sure he was not losing words. I remember asking (actually, pleading with desperation) to our pediatrician if the 26 letters and numbers 1 through 20 counted as words; they did not.  You see, that was one of the confusing things about Grayson’s development (and it continues to be today.) His speech and his intelligence are on 2 completely different levels. He could recite the alphabet and identify letters on flash cards by the time he was 18 months. He regularly counted to 20. His favorite number was 18 and his favorite letter was X. He knew that “M was for Momma” and “D was for Dada.” He mastered his shape games and puzzles with ease. He was so incredibly smart. He was so smart and yet he struggled to ask us for even his most basic needs. As a parent it is so difficult to watch your child struggling to communicate with you. Struggling to let you know what he needs. Struggling to find his words; his voice.

And so we counted down the days. We waited in anticipation. We waited in total fear. And while we waited we went on living. We went on with our day to day activities. Because even though it felt like something big was about to happen; our life was the same that it had been before. In the months that we were on the waitlist we tried so many different techniques proven to help kids with speech delays and behavioral issues. We started using essential oils on Grayson. We started eating clean. Well, that’s a total lie…Grayson started eating clean. James and I secretly devoured delicious un-clean foods behind the closed pantry door. Helping a two year old to eat clean is no easy task. Birthday parties were a nightmare. School snacks were terrible too. But, we stayed the course and tried to commit as much as possible. We followed the instructions to stop using gestures with Grayson. We regularly worked on word development. We sang songs and played with flash cards. We simplified our own speech to help him. We were doing our best to move forward and to make improvements.

And after 10 months of waitlists and pre-appointment check-ups it was time for us to head to Iowa for the diagnostic testing. They told us to expect a full day of testing. We decided that it was important that the testing day  be about Grayson. We decided to leave Rowan at home so that we could focus all of our attention on Grayson. After all, we knew that keeping one child happy and contained at a hospital for seven hours would be no simple task. And so we packed our bags and made our way to Iowa.  We stayed in Iowa the night before the test so that we could arrive rested by 8am. Except, none of us were rested. Grayson was out of his normal environment and because of that he was off of his typical schedule. James and I spent most of the night before lying awake; a million questions racing through our heads. It was very quiet in the car as we made our way towards the hospital. After month of talking and predicting and explaining and hypothesizing….we were left with only silence. Because no matter how much we predicted or explained or hypothesized; at the end of the day we would have the answer.

We were greeted by an incredibly friendly team of therapists and psychologists. They were patient and gracious as we navigated through the early morning. The day started with the ASOS test. This test is used to examine the markers of autism by simulating a variety of social situations and interactions. During this test they asked for one parent to accompany Grayson into the room and for the other parent to watch from the conference room. Anyone who knows me is expecting that I quickly raced to Grayson’s side to join him in the testing room. Except, that is not what happened. It was such a difficult decision to make. But my “mother” role had evolved so much over the past year of check-ups and therapy. I knew that the best place for me was in the conference room with the people who could explain to me exactly what was happening. Where my questions could be answered without distracting the process. I wanted to be with Grayson; more than anything I wanted to sit next to him and be the familiar face he looked to throughout the test. But, I knew that my true place as his is mother is where I could most help us get the answers we needed to move forward.

I was incredibly fortunate to be surrounded by my ally. Afterall, it was her connection that got us into the hospital so quickly. I knew that she would explain to me everything as it unfolded. As Grayson and James got settled into the testing room I watched on from the TV screen in the conference room. What a surreal experience. Surrounded by medical professionals and my best friend I watched my child on a TV screen as he played just a few rooms away. Just moments before the test began Grayson asked for an apple. The team hoped to save the snacks to help keep the session moving when Grayson grew uninterested. When Grayson learned that he could not have his apple he started screaming; and his other behaviors quickly followed. As I watched it all unfold I turned to my friend and said in a very quiet and still voice “we are leaving here with an autism diagnosis, aren’t we?” I cannot explain exactly what I felt in that moment. Maybe it was finally being at the test after so much waiting. Maybe it was the reality of the situation. Maybe it was taking a step back and watching Grayson in a way I had not done at home. Maybe it was my fear. Maybe it was my nervousness. Or, maybe it was my mother’s instincts. My friend looked me square in the eyes and said “It is going to be a very long day Jess, let’s not get ahead of ourselves.”

So we moved through the rest of the day. Grayson was asked to simulate a birthday party experience with a baby doll and candles. I smiled as he shoved the dolly’s face next to the cake and said “blow baby”. I felt so happy that he understood what they were asking him to do and that he was doing it in his own, Grayson way. Throughout the day they gave us lots of breaks. Time to catch our breath. Time to keep pumping the coffee in. Time to wonder. Time to worry. Time to buy our sweet big boy a yellow smiley face balloon. After the ASOS test Grayson moved into the language evaluation. This was the 3rd time in a year that Grayson went through a speech evaluation. It is tough to sit with a two year old for an hour and get a full-picture of his speech abilities; so at the end of Grayson’s evaluation she met with James and I and we filled in some of the missing pieces. Next James and I were interviewed by the psychologist. We spoke about our routines, our family dynamics, our jobs, our schedules, our care providers. We were asked about Grayson’s hobbies and his habits. We gave examples of behaviors and actions. It is amazing just how much emotion you can remove from something that it incredibly emotional to you. This was not the time to be sad or reflect on our areas of improvement. This was the time for facts. And so we went on for over an hour providing her with the facts from our life. When she finished with us she spent time on the phone with Grayson’s Montessori teacher. She asked her many of the same questions about Grayson behaviors and social interactions. The team evaluated notes from Grayson’s Birth to 3 team. They evaluated the hearing tests and the previous speech tests. In front of them sat an entire file of information about my son. Information that would unlock the answer to a question. A question that even in that moment I was not sure I was ready to have answered.

We took an hour break after the testing was completed. And then the phone rang and they told us that they were ready for us to come back. We went back into the conference room where I started my day. I could not help but look around and think about how just a few short hours ago I sat in the same room while we began the day. Grayson had reached his “sitting still” quota for the day. So while we sat at the table he ran and jumped and played around us. As we listened to the words of the doctors and therapists we could hear his giggle. We heard him trying to get our attention to look at his balloon. We heard the sound of him hitting the balloon. We heard the sound of him spinning in the chair. We heard his little voice say “mama look, daddy look.” And then all of the sudden the only thing we heard was the sound of someone saying “we are all in support of a diagnosis of autism spectrum disorder.”

In the moment after that I did not hear anything. For just a few moments it felt as if the world stopped spinning. I was overcome with such a rush of emotions. It was like the moment I first heard the word autism; except so much more extreme. Because then my child just “might” have had autism; and there in that moment there was no “might” about it. I knew that all of the faces around the table were waiting for me to ask questions. They were waiting for me to have a reaction. I knew that my heart was crying and my brain was spinning. I knew that nothing I asked in that moment was going to bring me clarity. God bless my friend for sitting next to me and being my voice. She asked all of the right questions about where he was on the spectrum, what prognosis, treatment, etc. She asked the questions and my eyes wandered from face to face trying to process the answers. And then I just knew; we were tired and sad and confused and it was time to go home. So they handed us a folder with contacts for the next steps. They shook our hands and gave Grayson a high five and we walked out of the office. We walked from the office to our car. I buckled my little man into his seat and gave him his milk. Without speaking my husband and I got into the car. We turned the radio off and we drove in silence. About an hour into the drive I turned back to find Grayson asleep in his seat. I turned to my husband and it was then when he looked back at me that I finally burst into tears. I let myself cry for a while. I did not want to talk about it. I did not want to promise each other that it would all be ok. I let my brain rest. I let my heart hear. And I just cried.  And after I had cried for a while, I picked up my phone and prepared a message to send to our friends and family. I found the words and the strength to tell the people closest to us that my son had just been diagnosed with autism. And then, in that moment, it was real.

JS

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