I worked as a school secretary and one day one of the teachers needed support from the principal for one of her students in the class. The principal was new and so she quickly went to the student files, plucked out the child’s file, flipped through it to make sure there wasn’t something she needed to know and then flew off to the class. I realized in that moment that I should have something written confirmed by my child’s professional of their diagnosis, and not just have this info in emails and verbal conversation. If anything happened at the school, a staff member would check the file and they would be aware. Wow, I have been SOOOOO thankful that I had that exposure and followed through in making sure that documents were in place for both of my children.
As you can see HERE on the BC Human Rights Clinic page they state:
“In a case called Matheson,[4] Ms. Matheson filed a human rights complaint alleging that she was subjected to abusive behaviour from a supervisor. She had a history of anxiety and panic attacks as well as depression. On two occasions during her employment, Ms. Matheson informed her employer that she was suffering from “stress.” However, she did not provide any medical information that said she had a mental disability.”
The Tribunal dismissed Ms. Matheson’s complaint, stating that “an essential element of a complaint of discrimination in employment on the basis of mental disability is proof that the complainant either had a mental disability… or was perceived to be mentally disabled by the employer.” Click HERE for her case.
Matheson’s case was dismissed because she did not inform her employer (school district) of her disability. If we do not have a written diagnosis in their student file with the school, as a parent if you file a human rights complaint, the respondents (school district’s legal representation) will cite the Matheson case and your human rights complaint will be dismissed.
We have got to get our kids formally officially diagnosed by proper professionals or your child has no legal human rights ground to stand on.
We need this diagnosis for the following reasons:
- Legal human rights processes
- Application for disability tax benefits (if applicable)
- Navigating the health system for proper medical care
- Advocacy in the education system for proper accommodations
- Social and emotional reasons – so parents are not blamed for having poor parenting skills and they are able to find other parents who have children with the same disabilities and get support.
- For the child – so they understand why they are having specific challenges and they don’t blame themselves for the wrong reasons. For acceptance and self-esteem reasons.
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Here is the wisdom, lived experience, and reflections from parents of children in the education system across BC. Thank you to all who were willing to share.
It’s a diagnosis not a label. I find once my kids knew why things were hard they stopped labelling themselves “stupid, lazy, dumb.”
- Anonymous
I think a diagnosis helps us to know ourselves….better. it’s been a breath of fresh air to me personally and has helped me forgive myself a bit easier. It’s also helped me identify things that work and don’t work.
On a wider societal scale: .for ADHD, there’s so much stigma, misinformation, out there it’s hard to feel comfortable disclosing..
I ask myself why would I hide my identity/diagnosis? Why do I feel so scared of sharing?
Obvs cuz we are likely to be met with incredulity of “you aren’t that disabled” or they treat you as less than, and that is hard because-as XXXXX said they have power over us.
What they do with that information is the concern….the biases that come into play when they have that information in hand.
But I also know that being loud and proud and dispelling the myths of the neurodivergence I personally have, perhaps can help open the doors for folks around me.
However, I don’t speak from an intersectional voice (I mean not just “being female”). And as such I hope to be an ally to those who do and amplify their voices.
Because there’s even more work to be done there.
My hope is one day everyone can be loud and proud about themselves.
- Chantelle Movay
And yet WHY should we have to make our private medical information public/known to people who have power over us in order to get support and accommodation? The idea that we have to out ourselves to be able to make a claim is problematic.
- Anonymous
Our son was diagnosed in 2018 and since then we have seen a world of difference. Because of his formal diagnosis, we were able to get him the support he needed at daycare (1:1) and now in school. He lacked social skills and would only parallel play with his peers but because of his Supports & EAs he has flourished and now plays really well with his peers. The diagnosis has also given him access to speech therapy within the school, an IEP and other tools/resources to help him succeed.
- Elena Lawson
Human Rights expects this in order for you to be entitled to accommodations. I know that is why it is critical and needed. As for my own child, in general professionals have never been able to give accurate recommendations. People can see “autism” and think they know what my son needs. But then surprise PDA, you actually don’t know shit.
- Anonymous
I am relieved that you bright this to light. Accommodations and supports/ language/ professional and so on will never be enough. For our family it has been lifesaving – literally. We have found the most inspiring family’s that we could ever ask for. I am grateful for that.
- Anonymous
Having an early diagnosis for our older child led to assessments and diagnoses for all of us. That has led into participating in groups with others who started traveling the road before us and getting recommendations which, we wouldn’t have heard otherwise. I can’t imagine what family life would be like for us now without that first diagnosis and learning about other options to parenting from mainstream expectations. It’s hard enough as it is, but that would have been awful. In fact, I’m not sure our marriage would have survived. I’m not sure how my partner would have survived mental health crises. Having diagnoses has led to support options through their online school which would not have been available otherwise and which we wouldn’t have been able to provide out of our own limited finances.
- Anonymous
We had our youngest diagnosed in grade one despite all the comments of “don’t give her a label” from relatives, friends and school admin. It was by far the best thing we ever did to put us on a path of understanding and acceptance. It has led to success in academics and my daughter has become a strong advocate for her needs. There are still some road blocks because of the severity of her Learning Disability but she is well equipped to find solutions to her issues.
- Cathy McMillian
Without documentation of dx, we run the risk of trying to reinvent the wheel every year. Let’s channel the energy and hopefully the enthusiasm to what works. As well, if everyone could get accommodations by saying junior needs extra time or a scribe or oral exams …. We have to have a measurement or standard
- Shannon Saunders
Socio-economic privilege provides access to diagnosis. Families in lower classes, disproportionately single parent households, are not provided with this same access. There are additional attitudinal barriers and medical bias that plays into even accessing the inequitable public system, along with personal barriers that are not supported (eg. difficulty navigating fragmented systems). BIPOC children are more likely to be written of as a behavior or family problem, without access to robust multidisciplinary assessment. Assessment and diagnosis are important for many many reasons. But using it as a gate to equity and support puts our most vulnerable families at risk.
- Anonymous
A diagnosis made it easier for my child to qualify for accommodations in university. Without those accommodations he would struggle to succeed.
- Anonymous
We missed out on so much due to lack of knowledge of dx and teen attempting suicide and spending 3 weeks in hospital as a result. I’m soooooo very mad at family doctor, psychiatrist, walk-in-clinics, counselors, school, and MCFD. Since dix, I have learned so much more
- Anonymous
I value this as a way to deflect personal views..refer to medical i always said..but had teachers say we are the professionals..sigh..and another district learning support principal say we dont need reports to know what your child needs..had psychologists come to school to vocalize need..no go on supports..went online..but if we wanted to fight. Yes. Diagnosis would help. Thanks for your efforts..i feel our situation was uniquely bizarre..but sought to leave ir rather than put our girl as psychologist recommended.take her off the battleground..
-Anonymous
The arguing over why certain things were happening and why our child’s behaviour was being blamed on a personality flaw at school was putting our marriage under incredible strain. It was eating away at our son’s self esteem and identity. Once we got a diagnosis everything changed. Not only was he diagnosed but it led to my husband being diagnosed. We all understood and could learn and advocate. The blame and guilt game ended. Proper diagnosis is so essential for life.
- Anonymous
long story short having documentation changes much of nothing when it comes to public school system. At the end of report from psychologist was around 10 recommendations, a big one was my kid needing 1:1 ea, bell to bell, never happened. Another was he should attend full days of K, never happened. That during school work he should have someone to scribe and or read for him, that happened when convenient for staff. Basically none of the recommendations were used. I had a OT spend an entire day at school, he had lots of good ideas and he too had recommendations, school didn’t follow any of them. His IEP, really was a piece of paper that brought in funding to the district. When my kid was in gr 5 he was at a gr 2 level academically, they tried telling me he was grade level. They say what you want to hear, when your gone, well sadly kids are not treated very well.
They destroyed his self esteem. Two mths in gr 5 I pulled him out of public school, he is about to graduate in a couple weeks and with his Dogwood diploma and he is a A/B student. All of his success no thanks to public school.
Anonymous