Accessing Education

This is a true story. It starts off like a too common of a story in the education system. A child with undiagnosed learning disabilities struggles in elementary school. I know. This is an old story that people are sick and tired of hearing about. Yeah yeah, undiagnosed learning disability…whatever!! It has become so common it’s like discussing the rain in BC. This story could easily end in tragedy, but this story has a twist. An anxiety diagnosis happens in kindergarten, epilepsy for four years-100 seizures a day, profound Executive Function, ADHD combined diagnosis is in grade five, and learning disability in written expression is confirmed by the end of grade seven. (Assessment paid for privately by parents, I might add.)

Support only really started in grade six and by then, the teacher and LSS teacher were playing catch up. Grade seven hit and the teacher had eight students with IEP’s in her room. Reality kicks in and the need was just too great. Reluctantly, due to no solution in sight, academic achievement in specific subjects were put on the back burner and social and emotional survival was taking the lead.

High school starts, and for the first time EA support that his mother advocated so hard for, are finally being offered. By now this child is refusing additional help and doesn’t want a scribe. He’s used to struggling on his own, he has delt with bullies, and doesn’t want to stand out. He wants to be like everyone else. Struggling academically for him is a well-worn walked path, one that is predictable, that allows him to hide.  His mother and his case manager are discussing the upcoming English class in a zoom conversation. Mom fears that without the support, he will fail. Based on history, she predicts nothing will get onto the page and without alternatives there will be nothing for the teacher to even mark him on. Child is still refusing. Mom knows how strapped the system is for resources and EA time. She doesn’t want to use up an EA that isn’t going to be utilized and have someone else go without. She reluctantly takes a long pause and says to the case manager, “Maybe he needs to fail. Maybe he needs to fall in order for him to realize and accept support.”

His case manager goes ahead and makes the decision to put an EA in the class anyways.  The EA and child hit it off. They were a great match and really connected. For the first time, the child is truly accessing his education and the outpour of work is stunning. The mother flips through a stack of pages bursting out of her son’s binder. Page after page they are filled with stories and reflections. The mother could hear her son’s strong voice shine through the writing, all while written in the EA’s hand writing. The upcoming report card revealed a B. The child, who over the years, was conditioned to avoid his painful report cards, now willingly leaned in closer to the computer to see his mark, and smiles…with surprise.

At the IEP review meeting, not only does the child for the first time accept that the EA-scribe support was very much needed, but he requested for it to continue in the future for all English classes. To top it all off, he acknowledges and accepts a scribe for all future assessments, for ALL of his courses and for this to be done in the learning center. 

He now has a chance. Finally!

Turns out he didn’t need to fail in order to accept support. He was used to failing. He needed to feel what it was like to succeed.  

**Not providing assessments for learning disabilities and proper support for equitable access to education is a systemic failure that punishes children for how their brain is wired and has repercussions for the rest of their life, their children’s life, their children after them, and for all of us as a society. Children don’t live in a silo. When children are struggling in school, it affects every single member of the family.  When children succeed in school, it affects every single member of the family.

The Non-Death Loss for Parents of Disabled Children in Education, All Over this Province

TO: ALL OF THE DIE-HARD ADVOCATES OUT THERE, TRYING TO IMPROVE THE SYSTEM, FOR THEIR OWN CHILDREN AND ALL CHILDREN, ALL OVER THIS PROVINCE AND COUNTRY.

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Do you ever just get so tired of walking through the verbal minefield when talking to some school administration? It can be so exhausting. I came out of one meeting and wondered what in the world just happened in there???

Sometimes I feel like I have been taken by some scammer.

Or I just donated to some fraud non-profit organization?

What exotic trip did I just sign up for?

I think we should show up to our meetings with a court reporter.

Set up cameras like in those crime interrogation documentaries.

We’ll all show up in outfits like we just telephoned into The Matrix. Neo, we’re in.

All kidding aside, if you have a serious meeting ahead…drink your coffee before you attend. You’ll need to be on the ball.

Not all levels of advocacy reach this kind of intensity, but if and when they do…you’re not alone.

What emotionally hits me is that when my kids started kindergarten and I remember those visual memories of them entering the classroom for the first time, all of the emotions of your kids growing up, attending their first day of school…NEVER, never, ever did I ever in a million years, think I would end up in the position to be emailing lawyers. Never!

And yet…here I am.

There is a sadness to that. A non-death loss. We lose the innocence and naivety that parents of non-disabled children experience. We know exactly how oppressive the system is. There is grief around that. Why can’t I think public education is sunshine and lollipops too?

Do you take the red pill or blue pill? Do you find out about the reality of public education or do you live in blissful ignorance? If you have a child with a disability, you don’t get a choice. It’s made for you.

I was a secretary at a couple of schools and it was amazing to me, how many parents of non-disabled children didn’t even know the name of their child’s teacher. Seriously.

I on other hand, can recite school legislation, explain the difference between Ministry of Education policy and the Human Rights Code, and define the loopholes in a variety of external complaint processes.

This isn’t what I thought it was going to be like. 

This is a loss that needs to be validated. The loss of innocence.

I am not the only one.

To the parent in the Facebook group who coined the term PTSD – “Post Traumatic School Disorder”. That’s a good one!

5 stages of grieving.

Denial – “Oh the system isn’t that bad…we must just be having a rough year. They aren’t ignoring my emails, they just are really busy.”

Anger – “What the #$@% is going on here, is this for real!?!?”

Bargaining – “I just want to have an honest conversation; I’ll even sign an NDA”

Depression – “What’s the point. Things will never change.”

Acceptance. – “I don’t care, I am filing anyways. Every little bit helps.”

Focusing on the negativity of everything is going to get us nowhere. However, toxic positivity and not even acknowledging the pain isn’t healthy either.

How many parents have gone through the stages of grief? Denial. Anger. Bargaining. Depression. Acceptance. What stage are you in?

Let’s sit here together and acknowledge what this feels like.

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Sex Education, Sexual Health and Disability

** Content notes: Sex, Sexual Assault

A disability advocate on twitter from the US said “If you talk about disability and you don’t talk about sex, you are treating us like we are children.”

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I have two stories to share and before I share those stories, I need to share this to preserve privacy.

I have lived in three different provinces in this country.

I have worked in both Deaf and hearing non-profit organizations in a variety of settings. (Supportive housing, independent housing, day programs, etc.)

I have worked in multiple school locations.

I have two really important stories to share.

Story #1

I knew a 15-year-old teenage girl with Down Syndrome who was raped by two boys from her high school and became pregnant from that rape. Her parents pulled her from school, and I never saw her again. I don’t want to explain our connection but when I heard the news, I felt such deep sadness and deep anger.

On a similar topic, but not connected to her rape, that school year her parents refused to sign a sex education health class participation form. They thought that because she has Down Syndrome, sex isn’t an issue in her life.  When I was in college for the Developmental Service Worker program, I had to take a class on abuse.  In the class we learned how predators choose people with disabilities to rape, and then will say that they consented. “They said yes,” is the rapist’s defense. What exactly did they say yes to? Then the parents have to take their disabled child to court and convince the court they are incapable of making decisions in order to have their child’s rapist arrested. Then their child, due to the court decision, will never be able to make any important decision regarding their life ever again. The abuse continues.

Story #2

This was another important person in my life. He was 16 years old. He was living in care. Like any healthy teenager he would masturbate.  However, he would become aggressive and frustrated.  They wanted to bring in a sex therapist to teach him to complete. Twelve professionals around a large table were in the meeting to discuss this plan with his mother and request her permission. His mother was stunned for the whole two-hour meeting. She thought because of the type of intellectual disability her son had, that his hormones would match, and she struggled accepting the content of the meeting. For the next two years his world shrunk. There were talks of removing him from school because he was pulling his pants down in the hallways and masturbating frequently. We couldn’t take him out in public because of his sexual behaviour. They were concerned someone would call the police.  He was under house arrest, essentially. It was devastating to watch this to happen to someone for something that was so natural and instinctive and human and with such a simple solution. It wasn’t until he was 18 when they were legally allowed to hire a sex therapist and his whole world changed.  He was able to have his private time and live a fulfilling life. What a disservice to this young man, to need to wait until he was 18 years old, and so life shaping.

People with developmental disabilities are often provided zero sexual health information or information that is not intended to really meet them where they are so they can find the information relative and useful. This is a complete disservice from our society.

People have different comfort levels when they talk about sex and sexual health.  People with disabilities should not have their sex lives be dependent on other people’s comfort levels. They deserve to feel sexual pleasure and have sexual protection.  

I have witnessed sexual health in education intended to teach people with disabilities, and I can tell you that those education moments were not designed for the community that they were teaching.  The sexual health teaching was a joke. It was checking off a box to say complete. We need to include sexual health but also focus beyond just sex and focus on relationship health.  Disability organizations supporting teenagers and adults through the lifespan have a responsibility to provide environments for romantic relationships to develop and grow through the lifespan. LBGTQIA2S+ included.

People with disabilities deserves better.

Over twenty years ago, I was in the Developmental Service Program at Humber College. Myself and another student each won an award for our academic accomplishments. We were awarded a free pass for a professional conference. We got a sneak peak into the professional world before graduation. I was listening to advocates already working in the system, discussing disability rights issues. I overheard one of the advocates say on our bus tour, one way to judge a disability non-profit organization that offers supportive housing, is to ask how many of their clients are married or in relationships. This particular organization boasted that they had six married couples living in supportive housing.

A friend of mine of Facebook a couple of years ago, shared an article. A woman when she reached her 100th birthday in Toronto was asked if she regrets anything about her life. Her response? She said, “I wish I had more sex. Well, it has been 30 years!”  Google that topic! She’s not the only one.

Humans have a natural sexual physiological drive. When we talk about disabilities and mental health, physical health, emotional health, social health, let’s not forget sexual health.  Let’s be honest. Sex is an important part of my life. How about you?