I'm Thankful For The Diagnosis
Coming full circle in the world of autism.
The moment Dr. Cormier let the words "autism" come out of his mouth completely unfiltered, my brain struggled to understand so many things. I knew my son was different, but I never knew his short journey on Earth would open my eyes in a world most people take for granted. From the moment he was born he was destined for greatness. We chose the name Gatsby because we wanted him to be remembered, and he has made an impact on those around him on a daily basis.
Gatsby was like any other kid when he was born. He was healthy and was meeting all the major milestones. He went to daycare and played with other kids at play groups, but once he was 1 1/2 years old I started to notice something was off with him. Gatsby began lining things up in straight lines and when you would take something away from him it was like his world was ending. He was hyper focused on specific items like cars, and would lay eye level to them and roll them back and forth for some times half an hour.
Gatsby had to be told over and over again to put away his toys, and would look for approval after each item. Cleaning would sometimes take an hour just to put toys away. He would just stand and cry when people would stare at him in public or even make eye contact. Or he would throw himself on the floor. He was completely scared of strangers to a level that my other coworkers kids in the military didn't do.
My mother's intuition kicked in, and I mentioned it to my ex husband and Gatsby's pediatrician both boiled it down to being a discipline issue. For months and months I kept saying something was off and I felt like I was drowning. I was trying to advocate for my son, but deep down I knew it would be a painful process. Painful especially for my ex husband. Being raised in the Mexican culture, it seems like there is a stereo type or shame status when something like this happens. My niece was diagnosed with autism, and even then my ex couldn't wrap his head around the fact that Gatsby could indeed be different.
He had 2 neuro typical kids prior to Gatsby being born from a previous marriage. They were healthy, independent, and excelling in school with little to no issues. But the more and more he got older, the more both of us began to raise eyebrows and question what was really going on with our son. Initially, he thought I was overreacting to an extent, but entertained the idea of seeing a specialist once we had our 2 year check up with his pediatrician.
After filling out the milestone questionnaire, Dr. Moll looked me dead in the face and said Gatsby was falling behind. My heart sank to my stomach. I remember being in the military. I was a Hospital Corpsman, and my whole job revolved around patient care. I did a large rotation in pediatrics and I remember handing these forms to patients unknowingly one day they would be a one way ticket to a specialist for developmental delays. The providers all said a common theme, at 3 we will refer them if they still aren't talking by then.
Gatsby was 2 and was not meeting the requirements for words, and was having so many sensory issues that they referred him any way to the specialist. The wait list truly felt like it had gone on forever, and then finally one day I got the call while I was at work. Gatsby had gotten in at Knights of Columbus. I was anxious, but I knew this would only help my son in the long run.
I remember there being a TON of paperwork. Each parent and the daycare all had to fill out a packet that seemed to be 10 pages long. After 2 visits and hours of testing, they finally came back with a diagnosis of Moderate Autism. Now if you didn't know there is an autism spectrum. Not everyone who has this diagnosis falls in the same category. Some people are considered high functioning and have normal jobs, and live on their own. Moderate Autism is that middle ground where there is sensory processing issues, and Severe Autism is like the biting, hitting, unable to communicate etc. Not every person who has autism has the same degree of it, and it completely varies symptom wise.
No lie, I went home and cried. I felt alone and more importantly I felt like saying "I told you so" to every person who ever judged me for not "discipling my child" because it was a "discipline issue". NO IT'S NOT. It's a neuroprocessing disorder. My son sees the world differently, that doesn't make him less of a person. He processes information at rates and speeds that are different to everyone else.
I started blaming myself, because his specialist said there is no fact of what causes autism. At this point they don't even know if it is genetic, or if it's something we consume while we are pregnant. One thing is for sure, the cases of autism have sky rocketed over the last 10 years. I asked myself:
Did I not sleep enough? Did I not work out enough? Did I eat too much junk food? Was it something in the water? Did my mental health cause this?
Truly there was no answer. I had began to grieve the loss of what I thought would be my child's future. I used to joke around with my ex about what he would do with his life, but once I got the diagnosis for him I felt hopeless. I didn't know if he would ever be independent. There was no "fixing him" he was just Gatsby. I was used to going to the doctor and them prescribing a medication to fix things, now I went home with the same child I walked in with and I felt like I didn't know him anymore. It was like I had a stranger living in my house, and everything I thought I knew before now had changed.
Now that didn't mean I loved him less, it just meant I had a whole new world to discover and adapt to version in life. The more I educated myself the more I realized Gatsby was teaching me things whether he knew it or not. And over time I had learned a whole new vocabulary, and was introduced to a world of people whos sole job was to work with kiddos like Gatsby. He got into early intervention services through the state I live in, and started working with a speech therapist as well as a occupational therapist.
While the road has been a long one, I had to stop being caught up in comparing Gatsby to other kids. As time has gone on, it does make me realize how far behind he is developmentally. I'd see people post videos of their kids singing on Facebook, or posing with the Easter bunny. But he was terrified of those things. It was hard to get through the grocery store some days without him throwing his shoes at random strangers or screaming, and I just remember asking the universe, why me?
However, I think I am more and more thankful to be appreciative when the smaller things do happen. As he gets older he has gotten more independent and we have gotten to the point where we have fully accepted him having autism. We are thankful that he has the technology to communicate with us. Given the age of tablets, Gatsby has learned to use an AAC device. Basically its a tablet with pictures, and when he wants something he will click on the picture and it says words for him. Because of this communication has become easier.
I am thankful for Gatsby helping me recognize that autism is not a bad thing. Its such a unique and beautiful thing to look at his perspective. After several support groups online and in person, there are many people who are going through the same thing. I am thankful that they understand my perspective and make me feel not alone, but more importantly helped me move past thinking this was a burden and considering it as just a different way of life. I am thankful that Gatsby has a ton of resources. With the "No Child Left Behind Act" Gatsby is able to go to school, and receive resources at no cost. He is able to have the opportunity to thrive.
I am thankful that Gatsby is so loving and compassionate. Almost every day, Gatsby is full of hugs and love and always wants my attention. I am so thankful for the little moments of him wanting me to be involved in whatever he is doing. It shows we have a bond and level of trust. I never had that with my mom. I always wanted my mom to be more affectionate and involved. But Gatsby doesn't even give me a chance. He pulls my face towards him if I am not responding fast enough. He pulls me into whatever he is doing. He wants me and wants me at my fullest, so I tend to appease his crazy shenanigans. Lately its been him feeding dinosaurs to his T-Rex.
I am thankful when he starts telling me the numbers on the pumps at the gas station, or every time we pass a specific vehicle he makes sure to mention, "Mom that's a bus!" or "Mom that's a truck!" I am thankful for his excitement when we drive past a giant pink elephant on the way to school. Without fail he gets so excited and screams, "That's a baby elephant!"
I am thankful that have appreciated my son's growth in speech, while it has been very slow most people take for granted that their child has been able to tell them they love them. In my 4 years of parenting Gatsby he has never said it. I have never heard the words "I love you". He parroted it one day when I bribed him with chocolate, but I knew in my heart of hearts that he didn't know what it meant. So when he does say new phrases or words we celebrate! We celebrate big time! Because it is an accomplishment that he is now finally expressing what he wants and needs. That's the hardest part, is not recognizing what he wants because he hasn't been able to communicate.
Imagine at the beginning phase of being an infant right? It's a guessing game to figure out why they are crying. You try feeding, offering a binkie etc. Some times it works, and other times you get frustrated because nothing is working. That is the world I live in daily. Normally kids phase out of that, and Gatsby never did. So now that he is finally communicating his needs, it's allowed me to be thankful because I can help him.
I'm thankful for the patience he has taught me. There is no timeline with autism. It has allowed me to be more accepting to people who are different than me, and to be the best advocate for him.
But most importantly, I am thankful that Gatsby saved my life. When I was in the military I was very depressed and suicidal. There was several times were I contemplated taking my life. I didn't know if I would ever get to a place where I wanted to keep going. Even after getting married to my ex, I just didn't want to be alive. I felt dead inside. Once I took a pregnancy test and saw that it was positive, I knew from then on I had to live. I had to push through the depression, because my son needed me.
Everyday he makes me get out of bed. He helps me to stay focused. He helps me to stay consistent in everything I do. He makes me eat whether I feel like it or not. He motivates me to go to the gym so I can live a long and healthy life. He motivates me to pay my bills, and make sure he is taken care of to the best possible degree. He motivates me to take my medicine so my depression doesn't get the best of me. But most importantly he has taught me what unconditional love is. He doesn't see the flaws I see when I look in the mirror. He sees a mom that's involved, who protects him, who deeply loves him.
I am thankful that he was put in my life. Being a victim of abuse growing up I saw what it was like to have parents who didn't care, and now I get the honor of raising a generation of kids. To write the wrongs of those before me, and set the example of what it means to be compassionate in a world that is unforgiving at times. I get to advocate for kids like Gatsby. Finally, I get the best snuggles in the world, everything seems at peace when he is at my side. Ultimately Gatsby completes that void of what was missing all this time. I may be Kayla, but to the world I am known as Gatsby's mom and I am a force to be reckoned with.
I hope some day Gatsby will be a voice to those who don't have one. He is a piece of the puzzle that one day will create a solution.