Advocating For Your Child

I took a nervous breath as the hubby hit ‘Enter’ on the Zoom call for the School Services Team meeting.

This meeting held this past week was when we learned the school’s plans for supports for T when he enters Grade 2 this September.

Advocating for your child is a necessary part of being a special needs parent.

It’s a skill that one might not feel comfortable exercising – myself included – but it is a necessary one to practice over time.

School and community resources for individuals with FASD can feel limited and opaque. But it’s important to advocate as it can make the difference in the services a child receives.

Being T’s parent has taught me to step out of my introverted comfort zone.

I’m still learning and stumbling as T’s advocate, but here are a few tips I’ve learned.

Understand how the system works

What’s the organizational structure of the school board and community organization? What services do they offer and how do they work? Who makes decisions and who influences decision makers?

Less than three years ago, I didn’t know the hierarchy beyond the school principal and learned about the roles of the superintendent, director, elected trustee and board itself.

When the board cancelled T’s specialized program, I made a deputation to the board. It helped build a case of support for T’s CYW.

Build a network of allies

It takes a village to support a child and building respectful relationships with teachers, principals and community service providers is important.

We’ve been blessed with great supports thus far. T’s principal was instrumental and key in advocating for a CYW for Grade 1 this year.

When we had our previous SST meeting in January, T’s community support team joined the call and did a great presentation about his FASD diagnosis and spoke about his needs.

Preparation is key

Prior to every SST call, I prep with the hubby. These meetings are short, so we need to be focused.

We talk through all potential outcomes – best to worst case – and how we would respond to each scenario presented to us.

When I deputed to the board, I had five minutes. So I rehearsed. I held a photo of T as I spoke, so the board members could put a face to the boy I was advocating for.

Diplomacy paves the way

I don’t doubt that a school board wants every child to succeed but I believe their intentions are not always matched with resource availability.

The hubby and my priority is T’s needs. The board, however, has finite resources they have to allocate amongst many differing priorities.

I always keep this in mind when I go into one of these meetings. I try not to go in guns-a-blazing, because that approach often gets people’s backs up.

Speak Up

Diplomacy is key, yes. But sometimes, you also need to stir shit up.

When T’s specialized program was cancelled, the reason provided was under the guise of moving to an inclusion model. But it was so obviously done as a result of recent government budget cuts.

I was so angry the hubby and I found about the cancellation from the media – rather than the board – so I shared our reaction with the media.

It didn’t make a difference in reversing the program’s cancellation but it did generate some discussion about the importance of true inclusion in education and that you can’t just pay lip service to inclusion; you have to resource it too.

Focus on the Long Game

As life teaches us every day, things will not always go your way.

We were so lucky to have a wonderful Child Youth Worker in Grade 1. We were repeatedly reminded this was a rare feat and I’d like to think our advocacy helped T get one.

We went into this week’s SST meeting hoping for a similar arrangement for Grade 2. We learned that this was not going to be the case.

The school let us know they secured a dedicated CYW for next year but this role is to serve the entire school, including helping T during unstructured times such as recess, when he struggles the most.

We were, and still are, disappointed but not surprised.

We are nervous about Grade 2. We believe the school is underestimating T’s needs in the classroom, despite his academic gains. His behaviour these last few weeks have been so challenging and I can only imagine what it’ll be like without a classroom support.

Alas, we will recalibrate with this future in mind. We have another SST meeting in the early Fall and it’ll be another opportunity to advocate.

Life is a marathon and not a sprint.

Later that day, after I picked T up from daycare, we stayed at the park to play, as it was a beautiful day.

T ran around in his usual Tasmanian Devil fashion, not a care in the world, stopping every few minutes to see if I was paying attention to him.

I smiled back. On the inside, I felt apprehensive about the future and uncertain how things will unfold in the new school year.

But I knew one thing was for certain: we will somehow figure it out together.