Who Are We Advocating For?

It has been less than one week since we launched the BC Parents of Special Needs Children – Action for Equitable Access to Education website. We are incredibly grateful for the support and interest our advocacy group has received from parents, educators and the media.

A common question that has been raised is “who are you advocating for? kids with autism? kids with developmental disabilities? Who?”

This is a fair question,. We have not been able to address this in the media interviews we have given over the past week, hence this blog post.

The British Columbia Ministry of Education defines special needs in the following way:

Students with special needs have disabilities of an intellectual, physical, sensory, emotional, or behavioural nature, or have a learning disability or have exceptional gifts or talents.

The parents who have shared their stories with us over the past several months certainly reflect this definition – we are a very diverse group! We have families who have children with learning disabilities, children who are gifted, children who have developmental and/or intellectual disabilities, children who have mental health challenges and others.

Tonight I want to write about the families who have children with invisible disabilities – these are the children who appear to others that they have no challenges at all, when in fact, these children are struggling in very real ways. These children might be experiencing a learning disability, significant anxiety or other mental health concerns, or they may be gifted. Sometimes these children and their learning profiles are not well understood – there is an assumption that they “look fine” therefore they are choosing to refuse to work, shut down, be the class clown, act out, etc.

A common theme we are hearing from the families who have connected with us is the lack of access to assessment to determine learning needs. Many are asking us questions about how to go about commissioning a private assessment – which costs anywhere between $1500 – $2500 – because assessment by the school simply isn’t available to them because their child does not have “severe” enough challenges.

Some might question why we would need an assessment at all – there are certainly arguments out there regarding supporting based on needs and that labels or diagnosis are not necessary.

But what happens when we don’t have an accurate understanding of the learning profile of our children?

This work by Karen Copeland is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

Whether a child’s behavior is “willful and manipulative” or “asking for help” depends on the judgement we, as adults assign.

What if we had the opportunity to really understand the learning profiles of our children and could make adaptations and accommodations to the academic material so they could be successful?

I can speak to the graphic above. When our son was in grade four, we paid out of pocket for a comprehensive psychological assessment that identified a number of concerns, including the fact that our son’s fine motor skills were in the first percentile – equivalent to a child in Kindergarten. This finding shed new light on why our son was refusing written activities – it was not all a behavior issue, as had been assumed for years, it was that he couldn’t write. Had we not commissioned this assessment on our own, we would never have qualified to receive one through the school district. Our son would be too far down the list.

When a child does not go to school…wait…let’s rephrase that. When a parent does not get their child to school, the community starts to judge. Assumptions are made about why that child is not at school, and most often it is related to  parenting.

• “The child is just manipulating his or her way out of going to school.”
• “The parents are just being lazy, there is no excuse for that child not to go to school.”
• “Give him to me, I’ll straighten him out.”
• “There must be something going on at home”
• “She’s just trying to get out of school so she can stay home and play video games all day.”

I wish they would speak with my child. He will tell a different story about why he does not want to go to school. It is not about staying home and playing video games. It is about crippling anxiety that he cannot manage, that morphs into thoughts that he is a stupid, dumb, worthless kid who gets into trouble all the time, so why bother going anyway. It is about an overriding feeling that he will never be able to be successful at school, that he can’t do anything right. Not to mention the learning disabilities that slow his ability to understand the new concepts so he is always a few steps behind the other kids.

Think about your own life. If you went to work every day and you felt like that, would YOU want to go?

When I wrote the post Responding to School Anxiety, linked to in the above quote, we were actually seeing some positive progress for our son. Unfortunately, as the school year continued on, we were unable to sustain this. We made the decision to remove our child from school in January 2015.

I guess my point is this. It is hard to capture everything in a five minute media interview, especially when it is not something you are accustomed to doing! I want to assure parents that we are advocating for all children who have special needs – be it developmental disabilities, learning disabilities, autism, physical disabilities, mental health challenges, students who are gifted and more. Our kids deserve equitable access to education, and we will continue speaking up for them!

We are currently finalizing the details of a meeting with the Assistant Deputy Minister of Education and another staff from the Ministry of Education. We hope to provide regular updates and reflections over the coming months.

We thank you for your continued encouragement and support.