Sebastian was born in November of 2013. His birth was a struggle. I attempted to deliver him naturally to no avail. The vacuum was used unsuccessfully 3 times. Sebastian was in the birth canal for longer than he should have been, which is where I’ve thought his problems stemmed from up until this point. He was ultimately delivered via cesarian section and seemed like a normal healthy baby. At 6 months old, his pediatrician recommended early intervention as Sebastian did not have a pincer grasp. He walked around 2 years old, had minimal words at that time and learned basic sign language. He currently talks up a storm, though he doesn’t always make sense when he speaks.
At 18 months, he was diagnosed with autism. At the time, I thought he was over-diagnosed, and it took me some time to come to terms with the diagnosis. With his diagnosis came a multitude of services. Sebastian received 40 hours a week of ABA therapy and his therapist was able to bring him to speech, OT and PT every week. Sebastian was brought into a new program through the autism company we were with at the time. They wanted to have Sebastian in a regular daycare with a one-to-one ABA therapist. This was a great program and Sebastian was able to learn through being around typical kids all day.
It wasn’t until Sebastian started pre-school that I truly recognized and saw his autistic side. His teachers would say Sebastian would shut down in school. He always played by himself in the corner and they thought he was non-verbal for a period of time as he didn’t speak in class. In school, he is now well supported. He has a one-to-one daily, speech, OT, PT and individual or small group reading, writing and math. I decided to hold Sebastian back in kindergarten, thankfully as low and behold….covid!! I went back and forth with his teachers about putting him solely in a special needs class. I greatly thought it was best for Sebastian to learn from typical kids and thought putting him in the special needs class would hinder him. I spoke to many professionals from his school, and they all told me that Sebastian would be more comfortable in a smaller, more individualized class. So, in his repeat year of kindergarten, he started in the special needs classroom with all the same services. What a blessing this was for him. Sebastian thrives in that classroom. He’s helpful to all his classmates, loves to be a performer and they loves to be a performer and they can give him everything he needs to work at his own pace there. What a blessing.
Sebastian has bilateral foot deformities. His feet are completely opposite of one another. His left foot is grossly flat, and his right foot has a high arch and is turned inwards to a degree. He started wearing DAFO braces on his feet and ankles at age 3. He had surgery when he was 5 to try to correct his right foot from turning in. It was unsuccessful which ultimately led his doctor to suggest repeat genetic testing. He no longer wears braces, as they didn’t seem to correct his right foot from turning in and often gave him painful blisters. His feet are two different sizes since his surgery. His right foot is 1 and a half sizes smaller than the left foot. He now wears a lift in his left shoe and nothing on the right. I now need to purchase 2 different sized shoes for him. In case you’re wondering, you can buy single
shoes from Zappos, though the selection is limited. Nordstrom has a split shoe program and that is how Sebastian got to have his very first pair of air Jordan’s!
Sebastian has always loved sports, football in particular. He obsessively watches football games, rewinds, and learns every step of the players, every word of the commentators and every cheer from the crowd. He can also throw a football far with accuracy and equally can catch most balls thrown to him. He is great at basketball, both shooting and dribbling. He is great with a soccer ball as well, despite his foot deformities. Sebastian struggles to understand the rules to the game making it challenging for him to play on a typical team. Thankfully in his young age of 8 where most kids are still learning sports, it has worked out for us at this time. I don’t think kids will have much tolerance for him not understanding the rules for much longer so we are enjoying keeping him on teams with typical kids for as long as we can. He is currently on his school basketball team which has boys from 1 st through 3 rd grade and this has been the best sport for him yet. We are also trying our luck with the special Olympics soon. We continue to try whatever we can to see where Sebastian fits in best. We got his diagnosis of Fox P1 syndrome shortly after he turned 8 in November of 2021 at the suggestion of his orthopedic doctor. We had a negative test when he was 2 years old. I honestly didn’t think much would come of it. I couldn’t have been more wrong. We got all the answers I never knew I needed. We are less than 2 months with this new diagnosis, and it’s challenged us to think outside of the box when it comes to his learning, frustrations, and meltdowns. He is the sweetest, most affectionate boy a mom could ask for and I’m thankful to have found this community of people to be on this journey with.