Tag: inclusion

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

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.

.

.

.

.

Twinkie Theory

What object is this?

What object is this?

Does anyone remember a Twinkie? Do they even still make these?

Cut it half down the center and it will look like this….

This is one point-of-view, one perspective.

Cut it length wise…

This is another point-of-view, another perspective.

If you looked at the last two pictures individually, you could easily think you are looking at completely different objects. When in fact, you are looking at the same twinkie. Two different perspectives, same object.

I have worked in public schools. I am also a parent/advocate in the school system. Two perspectives. Same Twinkie.

If you are ever in the middle of trying to bring two conflicting groups together…look for the Twinkie in their communication. The reason they are arguing in the first place, is because there is one!

I think educators and parents have a lot more in common than we think. I think we often feel we are looking at two different objects, when if fact we are looking at the same thing with sometimes different understandings of how to arrive at the same goal.  Sometimes. Sometimes we are looking at the same Twinkie.

Let’s larger the scope beyond parents of disabled children and front-line staff. There are many stakeholders in education. A mixed bouquet of perspectives. Do we all share a common goal?

So…when it comes to inclusive education…what is the Twinkie?

Context and Meaning

When it comes to literacy there are many documents and studies on the importance of having context and meaning, for the words we are learning to read, and how those aid in our understanding of text but also comprehension as a whole. Context and meaning can be applied to many activities that are requested of children in schools and not just be connected to literacy.

I worked in a class for teenagers with disabilities in a school outside of this province many years ago. Ok…almost 25 years ago. At that time, I was completing my student practicum for the Developmental Service Worker diploma at Humber College.

The teacher was trying to engage his students in cleaning up the classroom. This involved duties like wiping down tables, organizing book shelves and vacuuming the carpet. This one young man was Deaf with a developmental disability. He did not want to push this vibrating machine around the floor, just for the hell of it. Did not.  Sometimes in classrooms when students refuse to follow instructions and complete tasks, behaviour programs come out, from star charts to more intrusive measures. This teacher was very creative. He walked over to the hole punch and removed the base. He scooped up all of the white dots and sprinkled them all over the floor. He took the vacuum and showed that the vacuum was sucking up the white dots and through American Sign Language and modeling explained, cleaning. The student walked over to the vacuum and vacuumed the carpet. He quite enjoyed it and was very satisfied by seeing the success of his work.  His teacher gave the activity, context and meaning.

It doesn’t matter what type of a disability a child has, or whether they communicate this question to teachers or not, I can tell you, that when children are given instructions at school, they are asking themselves, WHY. Why do I need to run 4 laps around the gym? Why do I need to cut this paper?  This overt purposeful planning of added communication, in my mind, doesn’t happen enough with kids with disabilities in schools. People tell them what to do, without explicitly explaining why they are doing it. And I can not scream this loud enough, visual supports are sooooo important. I really value my experience learning from the Deaf community in this context. They do such a great job of visual supports. It’s not viewed as a “crutch” the way some hearing people view it.

Context and meaning.

Next time your child is being viewed as “un-cooperative” at school, you may want to figure out if your child understands WHY they are being asked to follow a specific instruction. It may turn out that your child is not a sheep, and willing to just follow random instructions over and over again without any purpose, just for kicks.

The Unpredictability of Public Education

Years ago, this particular school year flipped our lives upside down. Frequent phone calls for assistance to come and pick up my child. It was a year of not sleeping.  Every morning I would organically wake up by 4am.  Off to the gym by 5am, for my alone time. I would walk on the treadmill and cry. That was my coping strategy. I would think about what email to send next, how to approach the next situation, what to communicate to the counsellor, what appointments to still make, who to tell what, wondering if I was missing anything, what should I be planning for? It was constant. My stomach would be on edge every day after school.  My work hours needed to change to accommodate so I could be home to deal, so I started work at 7am, my husband taking the morning shift.  I didn’t see this ever coming to an end. At the end of the school year, I left my employment. The emotional weight and constantly being “ON” at work and at home every waking moment of the day was just too heavy. Something had to give.

The year after, it was a completely different situation. The teacher was skilled.  She used universal design. My child was supported by LSS. Every strategic move she made was all absorbed. Just like that, the phone calls stopped. I started sleeping through the night. No more emotional ripples effects to deal with after school.  I guess I didn’t need to leave work after all…

When proper supports are in place, I can breathe. The grass is greener, the sun is brighter, the air is fresher. We can all just…live.  It’s glorious. I also know, that with every change in teacher and with every school year that goes by, it’s all temporary.  Hoping for those amazing teachers and support staff to be the ones to stay around your child is a daily thought. There are amazing people out there. I have jokingly even let these people know that if they ever need a kidney donation or a blood transfusion to keep my contact info. (I offered my kidney up in a Christmas card one year).  There are also people out there who work in education who…(cough)… “need support”.

Public education is unpredictable. One year your child is supported and the next year they are not. Parents at the end of every school are on the edge of their seats. Questions around what support will look like for next year are being discussed as parents find out which EA’s are moving to different schools or are being cut all together.  One year a child could have an EA with 20 years of experience with a degree, the next year with 2-weeks of a district training program, or no EA at all.  EA’s can change yearly, monthly and for some horrified parents they have had to deal with daily or weekly changes in staff. Riding the roller coaster of public education will make anyone sick.

Unpredictable education supports are stressful. It happens all over the province. It takes a huge toll on parents AND children. I wonder how many parents remove their child from public education, in search for alternatives, for their own mental health, the need to get off the roller coaster, for some level of control and predictability in their own lives. The supports for my child this year have been wonderful. Next year?? Fingers crossed!