Inclusion, Resiliency, and Advocacy: Parenting and Supporing our Kids in the School System

As parents, we imagine our kids going off to school, entering Kindergarten, making friends, learning, and spending time in their classrooms. We picture them sitting at circle time, playing on the playground at recess, and learning how to read and write.

I had underestimated how much of my time as a parent would be spent advocating for my child to be included in the mainstream classroom. In the early years, I was grateful that my child was so resilient and able to come back from all of the setbacks they faced. As they grew older, I became resentful that my child was expected to be resilient, instead of the system changing to meet their needs. I also saw the significant impact this had on their mental health, which added even more challenges for them to face.

Inclusion

Part of the dream as parents that we have for our kids, is having them attend school with their friends, and in an ideal world, their neighborhood school. Our kids have a right to be in school with peers their own age, to attend community programs, and to feel like they belong in our community.

When we look at research to understand the positive outcomes of inclusion, we find that inclusion is beneficial for building relationships and increasing engagement.

"Although inclusive placements take different forms, as noted previously, certain critical child outcomes of belonging, participating, and forming positive social relationships reflect success of inclusive placements for children with disabilities. These could be characterized as sociological outcomes for preschool inclusion, in that they refer to social processes existing in classrooms and community contexts. For many children with disabilities in inclusive settings, engagement (Brown, Odom, Li, & Zercher, 1999), social acceptance (Odom, Zercher, Li, Marquart, & Sandall, 2006), and friendships (Buysse, Goldman, & Skinner, 2002) are realistic and meaningful outcomes." (Odum et al, 2011).

For me, inclusion is a basic right. Our kids and families need community and support and to feel as if they belong.

If you are looking for neurodivergent consulting support with gettting a diagnosis, building a support team, handling the IEP meeting, or getting parenting support for at home, I urge you to reach out to Jenny and Daviana at Navigating Neurodivergence. They are a wealth of knowledge and a great resource to support you on this journey.

Resiliency

When my kids were little, I was so grateful that they were resilient and able to bounce back from any challenges that faced them in life. As they grew older, I started to see the impact that this was having on them. It started with an increase in anxiety and increased intensity of outbursts of frustration. Our first visit to a mental health clinic was when my middle child was in Kindergarten. We were at our breaking point and needed help. The less that they were included in school and not accepted in society, the greater the impact this had on their self-esteem and self worth. By the time they were 10 years old, we had already dealt with suicide ideation and had our first emergency hospital visit as our child was suicidal. There is nothing that prepares you as a parent for this. But I can tell you, as a parent, there is nothing I wouldn't do to protect my child from this happening again.

I sat in a school team meeting this year where the school said that they really wanted my child to attend and be successful, but they can only come for 1 block a day. They were unwilling to put in the supports to have my child at school for longer amounts of time, as they needed to see if they needed the supports first. I discussed their mental health concerns and how we needed them to feel success with school and that we were unwilling to let them fail to access the support they needed. They told me that it would be okay, kids are resilient.

But should they have to be? Does my child need to be resilient because the school system is not giving them the supports they need?

I was at an event a few weeks ago and speaking with Jenny from Navigating Neurodivergence, and we were discussing that parents just want their child included and in the classroom. They have dreams of having their kids included just as any parent does, and they don't want a different classroom or additional supports if their child doesn't need it. She argued that when a parent is asking for support, the school needs to listen, as we know our kids best. It got me thinking because I don't want my child to have supports they don't need, I just want their needs met. In my case, that may mean an alternative, quieter school. I would love for my child to attend their neighborhood school, but right now, they need more support. They need flexible learning environments and smaller class sizes. I would love for every neighborhood school to offer this, but right now, that isn't the case.

Advocacy

Parenting a neurodiverse child comes with being an advocate, especially when dealing with the school system. There is no guide or handbook on how to advocate for your child, you are just thrown into it. It often starts with a gut feeling, knowing that something doesn't feel right, but not always knowing how to support or stand up for your child.

The system is set up to be reactive. Our children need to fail to access supports. We live in the era of budget restraints and fewer and fewer resources being put into school systems to support our children. Because of this, there appears to be an inability to implement proactive strategies, as that can take time and cost money. We know that in the long run it would help to create real change, but that would require systematic change and budgets to support it. This doesn't excuse our children not being included in school. It doesn't make up for the gradual transitions (that yes, can take all year to implement), or missing of field trips, or denied access to the classroom. Our children have a basic human right to be included in their neighborhood schools and it is infuriating that we need to constantly fight for this right every year for our children.

If your child is facing exclusion, I urge you to check out BCEdAccess Soceity. BCEdAccess has the mission to ensure equitable access to education for students with disabilities and complex learners in British Columbia. They also keep data on students that are being excluded from school. Exclusion can take many forms—being sent home, not being included in class activities, field trips, extracurricular programs, or being denied access to child care/out-of-school care. If a child or youth feels excluded, it counts. Read more about what exclusion is.

You can find the BCEdAccess Exclusion Tracker here.

I saw this T-Shirt when I had the pleasure of attending the Down Syndrome BC three twenty-one summit put on in September. Down Syndrome BC is a group of parents, guardians, self-advocates and caregivers to someone with Down syndrome, and they are stronger together. They discussed being advocates for their children and young adults and shared strategies to support each other and lift each other up. I was inspired, and it gave me the push I needed to send the email I had been dreading about getting my own child the support they needed at their new High School.

As my children age, my patience with the school system dramatically decreases. I find I am frustrated and often feel overwhelmed that I am having the same discussion year in and year out. But I have found building a community and speaking with other parents and caregivers has helped. We can share ideas, brainstorm solutions, and sometimes just rant about what is currently happening and how we wish it would change. I truly believe that we are stronger together and need to keep advocating for our kids best interests.

I hope that some of this resonates with you, and if you ever need someone to connect with, I love speaking with parents about this journey. You can find me at This World's Ours Centre in Vancouver.

Take care,

Koryn

References:

Odom, S. L., Buysse, V., & Soukakou, E. (2011). Inclusion for young children with disabilities: A quarter century of research perspectives. Journal of early intervention, 33(4), 344-356.