Cerebral Palsy, Education, Equipment, Love, Our Daughter, Our Son, Parenthood, Sebastian at School, Sebastian's Achievements, Seizures, Sibling Love, Toronto



Sebastian doesn’t ride the bus to school.

We live across the street from our neighbourhood primary school. Every morning when I’m backing out I have to maneuver between the parked cars on both sides of our one way street. Many parents walk their kid(s) to school. But not everyone. We use to school bell across the street to gauge how late we are. The first bell rings at 8.35. The ‘late’ bell rings at 8.45. We are late a lot.

Sebastian’s school day starts at 9. Some days we get there right on 9. Once a week we might make it before. The rest of the time we hope for just after. He has two days a week where he has occupational therapy that starts right on 9. Try as I might, he’s usually late. His school day ends at 3.10. I’m ALWAYS at least 10 minutes early. How does that work?

What about the bus? Sebastian doesn’t go to his neighbourhood school (yet-hopefully). I can’t walk him across the street. Or meet him for lunch. Or watch him play on the playground with his friends after school. There is a bus that would come to get Sebastian and take him to school/home. His day would start much earlier if he rode the bus. And last much longer.

It’s likely it would extend his school day an hour on either side. (9-3 would become 8-4). He would have to get up earlier. I would probably have to wake him every morning instead of waiting for him to wake me with his vocals on the monitor. All of these things make me worry about the possibility of increased seizures because it would mean less sleep and more work for his body. On the bus he’d be in his Red Racer. Not a reclining car seat with a pillow for him to lean on. And remember that time I had to pull off the road when he bit his thumb and couldn’t let go? I don’t imagine a bus driver is going to do that.

Sometimes we chat on the way to school. I talk and he listens or laughs. Some times we sing loudly or groove to the music. Most times he’s resting. And as soon as we get to school he perks right up and can’t wait to get in. I’m so thankful for that little bit of time when he can just rest and relax before school. And when I pick him up I squeeze him into a great big hug once we get back to the car. Sometimes he needs a drink because he’s thirsty or has air in his tummy. Sometimes it takes him a bit to settle on the way home and once we are home, he needs a snack ASAP. And we have time for a snack before dinner. Adding in time from a bus ride home and snack time disappears into a very hungry, grumpy boy.

Drop off and pick up at school is a part of our day. For the first week and a half of school I took Sebastian right to his classroom to drop him every morning. That’s how we did it at pre-school and no one told me differently in his new school, so I just kept doing it. One morning we stayed a little longer than normal so I could help show his new PT his awesome moves/walking in his walker. For various reasons we stayed much longer than we should have and that afternoon at pick up Sebastian’s teacher gently told me that I could drop him at the entrance in the morning and there were staff and volunteers that would bring him in. I got it. I really did. Of course that made sense. But it was still hard for me to do. I was thankful that they peeled the bandaid off slowly at first and then really quickly at the end.

The next morning someone was there to greet us before we even made it to the door. Before Tallula got her goodbye kisses in. I swallowed that lump in my throat and embraced another milestone in Sebastian’s life. And it got easier. We made sure to do kisses by the car. And I got to know everyone greeting Sebastian so I could greet them back. What had seemed impossible to let go just became a new normal. I’m good at those.

I did ask from day one where to pick him up. And we wait there every day. Tallula walks around and says hello to the kids already waiting or the various staff. She climbs up on the different sized chairs set out for the other students waiting for their bus. Or their parent. Though most of the kids at Sebastian’s school ride the bus. She spends time with the other kids and I love that. Wheelchairs and walkers are her normal. So are kids that communicate in different ways. She is curious and friendly. Waving goodbye and blowing kisses. And when Sebastian’s class comes out, she sees him and runs towards him. So happy. She can’t wait to be lifted to give her big brother a kiss. Sometimes we have a quick chat with his teacher or EA and sometimes we just reunite and head out the door. I like knowing and getting to know the people that Sebastian spends his day with. His friends that smile and say goodbye, wave to him and his little sister. It is our community.

Maybe he will ride the bus next year. Maybe he won’t. I’m thankful we have that choice.