Expect the Unexpected
By Fred Marvel | Published on November 19, 2020 | 8 Minute Read
Our journey with our oldest son was definitely not at all what we expected it to be. Aleks was born three years after my wife and I got married. His birth and first four months of his life were pretty typical. He was growing as expected and hitting his milestones as expected. Then the unexpected happened. After my wife went back to work, a friend of ours was watching Aleks until we found a more permanent solution. My wife worked in the same neighborhood as the babysitter and she happened to stop by one day during her lunch break. She knew something was up with Aleks. He was very sleepy and was not displaying his typical personality. Her momma bear instincts kicked in and she took Aleks to his pediatrician. The pediatrician immediately sent my wife and Aleks to the hospital.
What happened next shook my wife and I to our core. The doctors in the emergency room said that Aleks had Shaken Baby Syndrome and someone had been abusing our baby. This was completely shocking on so many levels. Aleks was hitting all of his milestones and never had a scratch on him. He was always around family and friends and we did not think anyone would do anything to harm Aleks. Since we had no explanation for the cause of Aleks’ injuries the hospital called DHS and the police. A couple of days into Aleks’ hospital stay, the babysitter called us to say that Aleks was dropped after he was finished eating. That helped us out with DHS and the police but we were not out of the woods with Aleks. He had bleeding on his brain, a concussion, brain damage and bleeding behind both eyes. He was in the hospital for eight days before he was finally discharged. The doctors told us he was going to need a shunt to relieve the pressure on his brain from the bleeding.
A month after we got home, Aleks had a really rough night’s sleep. He was cranky and up and down all night. We called his doctor and decided he needed the shunt right away. We spent another week in the hospital with Aleks while he recovered from surgery. After surgery my wife and I quickly learned how to advocate for Aleks’ needs. We were thrown right into the fire and I don’t think we had time to truly process what we were all going through. My wife was a rock start handling all of Aleks’ follow up appointments with his team of doctors and therapists. We also began OT and PT services in our home. I handled DHS, the police and the district attorney’s office. Aleks made a miraculous recovery and over time was cleared by every specialist that was following him.
When Aleks was three years old we decided to enroll him in a local daycare. We figured that he was now ready to get around some kids his own age and make some friends. All the therapy and appointments were finally behind us, or so we thought. Almost immediately Aleks had trouble. He was aggressive with his teachers, couldn’t follow the daily schedule and would almost constantly try to run out of the room. At the same time at home we noticed he was being more aggressive with us and eloping whenever we took him out of the house. Thankfully the owner of the daycare was so nice and helpful. She pointed us in the right direction to get him evaluated and to get him whatever help he needed.
"Our journey with Aleks has taught me more than I could ever imagine. It has taught me to advocate."
This was a very tough period because we thought that we were finally done with doctor’s visits and therapy sessions. We thought we were finally past all of that and ready to enjoy life with our amazing son. Eventually Aleks was diagnosed with ADHD and sensory processing disorder. The developmental pediatrician we saw also said he had some autistic symptoms but not enough to place him on the spectrum. To say this was tough was an understatement. Neither of us were familiar with ADHD or sensory processing disorder. I felt like I was learning a new language. But the bottom line was we were in for another round of OT, both at the hospital and in our home. Aleks was also given an aid to help him through school. We found him a great preschool that was able to help with his needs.
Aleks was able to attend one of our neighborhood elementary schools with great success. But as he got older we notice he was having a hard time socially. He had trouble relating to the kids in his class. He had that same trouble with the kids in his karate class and on his baseball team. This led to us pursuing an autism diagnosis. He was finally diagnosed with Level 2 Autism two months before his 11th birthday.
Our journey with Aleks has taught me more than I could ever imagine. It has taught me to advocate. Not only advocate for him, but his two little brothers as well. If I feel like Aleks needs extra help then I am going to say something. If I disagree with a therapist or teacher then I am going to say something. I am going to trust my instincts and do what I feel is best for him.
This journey has taught me to adjust my expectations and appreciate what I have. Sure I did not get the super athlete son I hoped for, but the son I did get was even better. He’s obsessed with Star Wars and video games. He is the most loving 11 year old I know. He loves his family with all his heart. That is all we can truly ask for as parents of any kid.
I have also learned to adjust my way of thinking. Being the typical tough-guy, stern dad doesn’t work with Aleks. He gets overwhelmed easy so he needs someone who is calm. He is looking to me to be a calm anchor. Sure there are times I get frustrated and that is OK. Just as Aleks is learning, so am I.
Most importantly I have learned that there is no end to this journey we are on as a family. I used to think that at some point we would be through with all the therapy and appointments. I have realized that while some periods may be more filled with appointments than others, this journey just keeps going. We learn to be better parents and Aleks learns to deal with a world that isn’t always accommodating to him. And through it all we love each other with every fiber of our being.
About the Author
I am a husband, father of 3 and podcaster trying to bring awareness to autism.