5 years old
Jaxton is 5 years old (will be 6 in late May) and was diagnoses with Syngap1 in October of 2021. Jax had his first seizure in July of 2018 and was diagnosed with Autism in February of 2019. He lives in Oxford, Georgia which is about 30 minutes East of Atlanta. We knew something was going on with Jax as we noticed Jax wasn’t achieving milestones on time. For instance, I noticed he still wasn’t sitting up on his own around 8 months old. Initial trips to the doctor were not informative. No one could or would put any sort of idea out there as to what he could be dealing with. We were basically told he was a “floppy baby” with hypotonia. After several visits, we decided to just let him grow and see where it goes after an EEG around 1 produced no additional information from the doctors. Just between the ages of 18-24 months we started noticing his “eye flutters”. Eventually we wound up at Scottish Rite Hospital in Atlanta after we took him to a neurologist, and they told us to go across the street and admit him. He was diagnosed with generalized primary epilepsy July 18th. We then started pushing to get him tested for autism and a doctor from the Marcus Autism Center diagnosed him with autism a few months later.
Jax faces struggles with communication. He is often frustrated and lashes out with scratching or biting behaviors if we don’t understand what he wants. These behaviors typically only occur around the family or sometimes his therapists that he has grown comfortable around. Jax has wonderful ABA therapists that work with him in addition to his great teachers in his kindergarten class. Jax has flourished since starting school full time this year. He loves his teachers, and he loves going to school. Most days he gets out of the truck with a huge smile on his face. He loves his fellow classmates and often goes around and lays his head on them and says “aww”. He has 4 older siblings who absolutely adore him and help take great care of him.
Jax loves playing with electronic toys and balls. He also loves to go on his slide. He has two dogs that are good with him, as well. He also enjoys music and loves to “dance” (typically rocking back and forth) when listening to it. His current favorite song is “Ba Ba Black sheep” and “Twinkle Twinkle Little Star” and he also loves “We Will Rock You” by Queen. Jax is absolutely enthralled by fans. He loves to lay on the floor and look up at the ceiling fan while flailing his arms around. He is getting much better at communication and saying words. He is often a little parrot and quickly blurts out words he has just heard. Jax loves to ride around in the car, and he also has a remote controlled big wheel that he really enjoys riding around in. Jax loves water and waterparks (its a struggle to get him out of a pool) and enjoys bowling!
Jax is overall a very happy and healthy little boy. He is super tough and has a high pain tolerance. He gains many bumps and bruises as a reckless little boy that has very little fear! Thankfully we have only had two ER visits that have resulted in stitches (to date)! Jax loves being active and on the move. He loves walking and he recently won first place at the Special Olympics event at his school for running.