Admiring Aidan is Admiring Autism
By Allania Lathrop | Published on September 21, 2020 | 10 Minute Read
When we are children, our parents read us many books that hold more meaning than the stories themselves. Of these stories there is one that resonates when thinking about a child's development, and that is The Tortoise and the Hare.
If you happen to be unfamiliar with this classic tale, a tortoise and a hare with unequal abilities, compete in a head-to-head race. In the end, the tortoise, who you assume would not win due to his genetically slow pace, crosses the finish line before the hare. We were taught that slow and steady wins the race; if you are patient and take your time, you will cross the finish line. As parents we are often reminded to apply that same approach when it comes to our children’s development and “milestones”. But what if your little “tortoise” gets stuck in the mud and must drop out of the race entirely? What then? How does the story end and is it “good”? “bad”? Or is it neither?
I am a proud mother to three beautiful children. All three of our children have their own sets of strengths and weaknesses and carry their own unique personalities. My first experience as a mother occurred when I met my husband who had a son from his previous marriage. Carter was four when I met him, and I was very honored when I became his stepmom. Unfortunately, I was not there for all his beginning development, but I knew I could not wait to have those experiences with a newborn son of our own one day. When we got pregnant with our youngest, Aidan, our daughter, Scarlett, was only a year old. Although she was six weeks premature, she seemed to be tackling her milestones ahead of time. When I found out I was having a little boy, I made huge plans and expectations for his future. To me, having a boy meant rough housing, playing in mud, sports games and helping Dad build things. I decided back then, in my head, that he would follow in his Father’s footsteps and play college football one day.
When I was twenty-six weeks pregnant with Aidan, I began having preterm labor contractions. They would start and by the time I made it to the hospital they were seconds apart. These labor contractions went on for the next six weeks and I had five different stays at the hospital to try to stop them. Over that course I received fifteen shots of steroids, five rounds of magnesium, and countless injections and pills of terbutaline because Aidan was fighting to enter our world. It felt like a battle every day to keep the contractions away. Eventually on my last stay Aidan was delivered via emergency cesarean. I was told he was born with ten little fingers and ten little toes. He was perfect. Aidan was rushed away from the operating room and to the NICU. By the time I got to see him he had wires connected allover his little body and a CPAP that hid his face. He had surfactant applied to his lungs so that he could breath and had a bili light to fight off jaundice.
He had oxygen support for three weeks, fighting to breath on his own. I remember the day we finally discharged from NICU. He no longer had oxygen, monitors and professionals caring for him and I felt more nervous this time around. However, I was his mother and it was time for me to protect him. I picked him up, clipped in his car seat and we left for home with our new little family member.
It was pure chaos adding a newborn to our life with a very strong-willed toddler. There were double the diapers, double the feedings, double the dishes, double the snotty noses and double the crying and time seemed to be flying by. Two months after coming home, my son returned to the hospital fighting for his life. He caught RSV and was hospitalized in ICU on CPAP and oxygen support again. He went on to fight RSV in the hospital a second time. He struggled in and out of urgent care and doctor trips with Bronchial Pulmonary dysplasia and asthma. He fought a nasty contact dermatitis for six months that a dermatologist and an allergist could not really determine whether it was that or not. His teeth grew in with enamel hypoplasia and warranted an emergency dentist visit. He struggled with digestive issues and countless doctor appointments to address all his health issues. My husband and I started a joke calling him our “thousand-dollar medical baby” because he was always following up for something. We joked he was really taking our insurance company for a run for their money. Little did we know the medical payments would never end.
"He no longer had oxygen, monitors and professionals caring for him and I felt more nervous this time around. However, I was his mother and it was time for me to protect him. I picked him up, clipped in his car seat and we left for home with our new little family member. "
Over his first year of life and development I noticed a few differences between how my daughter developed and how Aidan was developing. I would often mention a few concerns to our family members and friends regarding Aidan. He was quiet and did not seem to interact very much. I also had concerns that Aidan’s motor skills were developing much later than expected. Every experienced mother that I knew would reply with “Every kid is different, he will be fine, stop worrying!”. So, I did! I joked that he had my quiet, antisocial personality and threw the worries in the trash.
Our “neurotypical” daughter continued to hit all her milestones on time. She had walked a little late but otherwise seemed to blossom on her own. She had no problem with language development, with her first word being “NO!”. She was a very confident child and made sure everyone knew when she entered the room. When it came to Aidan, I put all my expectations on the fact that Scarlett had turned out fine and that he would be fine too, besides they were both premature. There were many moments in his early development that I brushed off and just told myself that I was overreacting. I did not want to look like an over concerned mother. In between juggling our two little ones and the rest of our life I somehow failed to speak up about Aidan. In those first sixteen months of his delicate life, I truly failed my son. I wish I had spoken up sooner. Maybe my son would have had help earlier on. Maybe our life would not have snowballed as quickly as it did. These thoughts will forever haunt me and follow me for the rest of my life.
For the most part of our days spent together, Aidan was silent and content. His older half-brother and sister made up for the lack of noise and our family would often joke that you could almost forget that Aidan was even there. He wouldn’t gawk at himself in the mirror or admire his reflection like his sister did at his age. Eventually, he started to turn away and avoid the mirror. Avoiding his own reflection in the mirror eventually turned to avoiding eye contact. Whenever I would change his diaper he would turn and flip over to escape my eyes. When we would attend family gatherings Aidan would crawl away to a dark and quiet area. When we would find him, he would be rocking on his knees. Aidan struggled with transitioning to solids. Aidan refused to mimic animal sounds or numbers and rarely gave me his attention. He would scream and thrash If I tried to get him to do an activity such as puzzles, drawing, sensory bins. He did not like to pretend play. He did not like me near him. He wouldn’t let me hold him or rock him. He wouldn’t let me read to him. He would wriggle out of my arms or cry when I would attempt rocking or sitting together. He flapped his hands when he was excited and grew an obsession with cars. He would collect cars from different toy bins around the house and line them up on the coffee table. He wouldn’t play with them, but instead would spin their wheels or play with parts. He seemed to be drifting into an internal hole. Then, at fifteen months he stopped saying “da-da” and his babbling disappeared.
When our eighteen-month checkup finally arrived, Aidan had just learned how to walk. Again, all my worries disappeared because he had gained that motor skill. I figured all of the other interesting habits were a part of his personality. I entered this appointment confident as ever. However, as his appointment progressed our pediatrician started to worry me about areas I had never even considered. I was so focused on motor skills when it came to my children that I totally forgot about communication, verbal and intellectual skills. Aidan failed his eighteenth milestone check list and was in the dark gray. All I knew at this point was that you did not want your child to end up in the dark gray area on the graph. Our pediatrician nervously chuckled and retrieved a sixteenth month checklist. He was premature after all. He drastically failed that as well and remained in the dark gray area. At that time, I was still naïve as to how important these graphs were. I had no idea HOW FAR he had fallen behind compared to peers. Somewhere between two toddlers, a house, a husband, pets and Aidans health thus far, I was failing my son.
"Somewhere between two toddlers, a house, a husband, pets and Aidans health thus far, I was failing my son. "
Our pediatrician referred us for an evaluation with ECI. Aidan’s Batelle score reflected that of a 4-month-old. How was my 18-month-old so drastically behind I thought? What was I doing wrong? After a month into ECI our therapist said something that dropped my heart. She recommended that we go back to his pediatrician and let her know that “their services may not be enough for all of Aidans reg flags”. Red flags? What are red flags I thought? I immediately googled “red flags'' and my heart sank when the word Autism appeared. Autism? Isn't that something that is genetic or something they blood test for? Our pediatrician proceeded to send our son for a hearing test and a psychological evaluation. My heart sank when our pediatrician explained Aidan was diagnosed with moderate to severe autism. At nineteen months old, my child began walking on his toes and had a diagnosis. As a mom, in those first few moments, you feel like you just lost your child and your life. I felt so numb. What did this mean for his future?
I started scrambling for more information and more advice. I went to a pediatrician behavior specialist and she diagnosed him with autism. I went to the neurologist and she diagnosed him with Autism and few other muscle related conditions. I couldn’t escape the word. Every test, every evaluation, every doctor agreed – Autism. In those first few months of his diagnosis I was so selfish. I was crying constantly, thinking about his future, thinking about my family's future. I was depressed. I felt like I had failed my son. I was supposed to protect him. Somehow this was all my fault and I honestly crept into a depressed state. I felt angry and blamed God. I wondered “why did my kid have to have delays...why Aidan? He had already been dealt a harsh start to this world with his health...now this?”. Aidan was prescribed full-time ABA therapy along with occupational therapy, physical therapy and speech therapy and we followed through with those recommendations.
One day something happened that made me realize how selfish I had been until now. I was studying my son and watching his behaviors. He was pacing and humming around all of us as we were cooking breakfast in the kitchen. He started making his loud yells that he often down. I sat down parallel from him and looked at him. He let out another yell. I joined. His face filled with wild excitement. He looked at me right in my eyes and let out another call. I proceeded to mimic and join in. My daughter started giggling and made those wild yells. My husband came around the corner and joined in too. Eventually we were all stomping and dancing around making wild yells. A huge grin crept over my son's face. I had not seen a facial expression from him since he was twelve months old at this point. Aidan glanced around at all of us with pure satisfaction. We had finally joined his world. I was so blind with my own selfish adjustments to this diagnosis that I had forgotten to fight for my son and who he is. He walked over and laid his head in my husband's lap with a smile of relief. He felt accepted and we were standing by him, supporting him. In that moment I realized how hard my son was fighting to adjust to our world. He was fighting to adjust to everyone’s expectations.
"He started making his loud yells that he often did. I sat down parallel from him and looked at him. He let out another yell. I joined. His face filled with wild excitement. He looked at me right in my eyes and let out another call. I proceeded to mimic and join in."
I no longer feel cursed or cry over this new chapter in our book. I feel blessed. My son has taught me to truly step back from the standards of society and appreciate my child for who he truly is. When I cry tears, it is because I admire my son so deeply. I admire his patience. I admire the patience he gives when my back is turned, and he is trying to sign a need to me. I admire the patience he has when I turn around and finally notice that he is signing repeatedly and desperate to get his need met. The patience he carries to all his tiring therapies throughout the week. The patience he exhibits in the car rides to and from therapy every day. The patience for every new test and doctor visit he must attend. The patience every time his sister steals a toy out of his hand because she knows he will not put up a fight. The patience he gives as we all learn and adjust to this diagnosis. Aidan is the last child of ours to throw a fit or to talk back. He goes with the flow for the most part and makes the most of the day. He loves the outdoors and never declines a walk in his wagon. He doesn’t fight me on the outfit I choose for him and he patiently waits in his crib every morning for me to notice he is awake.
If I could give advice to moms of a child who need special needs, it would be to stop and live in the moment. Stop planning. Let go of what society has forced down our throats as “normal”. Start admiring your child for all that they are today and forget about what they might not be tomorrow. Something unexpected like this shakes up your reality. It makes me you stop fighting for YOUR dreams you once had for your child and makes you start fighting for THEIR dreams. Stop focusing on what doctors say your child is not doing and admire what they can do.
About the Author
Allania is a mother to two young children and a stepmother to her oldest son. When her youngest son was diagnosed with autism at nineteen months, she began her mission of spreading awareness for the developmentally delayed community. Allania hopes to fight the stigma that is linked to autism by showing her sons unique abilities and loving nature. Allania is a coffee enthusiast who enjoys fitness and nutrition and spending time with her family.