The School Years are the Hardest

Jack is graduating from high school soon. This last year and a half we’ve had to plan his transition into the adult world.

I was terrified at the thought of his moving into the adult world. I had heard so many horror stories from other parents, about the challenge in finding the right program for their child, and once finding it, being able to secure a spot in that program, which could take several months, or worse, once getting in, getting only 2-3 days a week.

I met parents who were forced to either quit work or reduce their work hours to be with their child, and then have to apply for a government subsidy to help pay the bills. I literally heard from one parent that between the ages of 18-25, it was a wasteland, there was nothing out there for our kids.

So we kept him in the school system for as long as we could. In fact, we were able to get him to repeat a grade in elementary school in preparation for his transition into middle school.

But truthfully, I have found the school years EXTEMELY hard.

It was finding the right school for Jack, that offered a program suitable for his needs, which also ensured his continued development. And then having to advocate and plead our case to the school board to allow him into that school and program because the school itself was in a different zone to where we lived. This was for every level of school:  elementary, middle and high school.

It was having to teach his teachers and the educational assistants each year what his medical needs were and where he required support. This is in addition to the individualized education plan: a series of developmental goals, that included the strategies used to meet those goals and how those goals would be measured. That document would end up being up to 14 pages long.

It was figuring out before and after school care during the elementary school years, then after school camps 3 times a week and respite 2 times a week during the middle school years, and then respite 3-4 times a week during high school. PLUS the challenge of hiring and retaining a respite worker, who based on the salary we could afford to pay, usually ended up being university students and were gone within 3-4 months.

It was having to accommodate all the scheduled days off school, besides the typical summer break and statutory holidays. Two weeks in December, two weeks in March, monthly professional development days, the days when school would start at 10am, and early dismissal every Friday (i.e. 1:45pm).

It was incredibly hard trying to manage this schedule working full-time and having no help, especially when they were both younger. The worst period of time:  when Jack and Harry went to different schools and the school schedules didn’t align with each other.

This was our life for several years, and it was only when the boys started getting older that I was able to find ways to deal with this demanding schedule. First was teaching Harry how to use city transit to get himself to and from school. He was 12 years old when we started that, because he was nervous and needed time to be ready for this level of responsibility. It was also speaking to my employer about what flexibility I had with adjusting my work hours, working from home, using vacation time, and working longer days on the days I had hired respite for Jack.

These strategies were fine for managing the day-to-day, but this is outside of the countless sick days, tests, procedures, blood work appointments and the medical appointments where I had to take 1.5 days off work to travel to the children’s hospital. Never mind the time drain when he was on peritoneal dialysis.

Parenting is hard work, and you need to give up a lot of yourself to do it – I know that. But parenting a child like Jack, with his extensive medical and developmental needs, added a layer of complexity to the logistics of being able to parent him. This is not laying blame of any kind, just an observation of my own experience.

So I’m being honest when I say that now, I’m actually looking forward to his transition into the adult world, that instead of complicating our schedules even more, I’m feeling hopeful it will end up being a little simpler.

You gotta have hope, right?