Tag: disability

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.

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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?

IEP Meetings in Public Education

Tis the season…

For some people there are four seasons in the year. For parents of children with disabilities we have a fifth season. It’s called IEP season.

An IEP is a lifeline to your child’s education. IEP stands for Individual Education Plan. The IEP has been undergoing some changes in recent years and the role of what inclusion means for all children has been evolving due to very passionate education advocates with very high disability literacy skills.

We live in a social stratification system. That means that our social structure is layered, a hierarchy, like bricks layered to form a wall. The layer you are in, will dictate your access in life. Not everyone has equal access to information, choices, safety, health care, education, relationships, etc. The list is a long one. Social stratification is almost universal, in all cultures. Those who have privileges don’t really notice it. It is weightless. The people who are not part of the privileged layers do feel it. It’s felt every single day. Heavy.  Taking up space in society when you are not part of societies cookie cutter pop out shape, can feel like a protest.  Advocacy is a part of daily life.

Parents play a key role in their child’s education. Ableism is blended into our society and chasing the dream of true inclusion in the classroom is often a dream that parents spend years chasing. The expectation of inclusion and anti-ableism is changing.  Parents and students have had enough of being excluded from the classroom, either physically, mentally or emotionally.  The struggles are real. There are wonderful stories out there and there are also horror stories.  The pandemic has brought to light the inequities of society even more and the inequities in education are no different.  To say this year has been stressful for many families with children who have disabilities is an understatement, while other children have flourished with the adaptive distant learning options.

It starts with the IEP, and in May and June, IEP meetings are all a buzz to review the year.  Emotions are high and advocates are in full swing. For those of you who are busy getting ready for this year’s seasonal planning, your advocacy efforts are a puzzle piece of a much larger picture.  You may not realize that your individual fight for your child’s rights to access an education, are part of a larger cause. The movement is growing. Anti-ableism is part of the diversity movement, and the movement is building, one IEP meeting at a time.

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.

Systemic Impacts of Scarcity in Education

I’d like to bring up the subject of scarcity and the concept of applying the impacts of limited resources in the education system. It could be physical, social, emotional, or mental scarcity.

Limited resources change how people interact and behave at the most primal survival levels. There are already many scholar reports on how scarcity affects decision making and neuropathways.  Scarcity is when there are limited resources and people are not getting what they need.  Animal and human behaviour will change in these environments. When something is scarce, people will put a higher value on it. People will use social capital, aggression, secrecy or whatever strategies they can to obtain those limited resources for their own unfulfilled need. This is evolution and not a personality deficit.

Whittling the education system to bare bones and creating an environment of such limited resources will turn Mary Poppins into Cruella Deville in just a few months. Work environments can become toxic. Communication and information among staff can be used as a source of power.  Confidentiality among staff can be used as a social manipulation tool to build a sense of belonging or exclude.  Subgroups become even more exclusive. People are being set up to fail. It’s not personal. It’s systemic design. Evolutionary instincts will kick in, and not the kind ones. Stress bubbles will burst. People will snap. Children included. Recruiting and retaining quality educators for any length of time, will be challenging. This will have more of an impact on students with disabilities and those in marginalized communities. I repeat. This will have MORE of an impact on students with disabilities and those in marginalized communities.

Understaffing is a form of scarcity. When there aren’t enough people to fill the job duties that are required for functioning, and people need to step over their own job description boundaries to fill in for other people’s work, that has multiple direction points of impact. If it’s chronic, then you’ll see the ripple effects of scarcity.  Work environments will become “unhealthy” and over time people will become very dissatisfied with their work, ultimately pushing them out of the system and creating a deeper wedge in the cycle and it just goes on and on.  Underqualified staff just filling “the body” in the role, is not the solution.  Take a look at the number of job postings for school districts and take a look at the ones that are just continuously on repeat.  The districts are all in the same basket. They are even competing with each other trying to coax staff out of each other cities with advertisements.

School districts are extremely complex human systems. The number of connections and moving parts is overwhelming to me when I try to put this system into a visual representation. It looks like a large spiderweb post wind storm. Not only do I look at all of the individual parts when I look at a system, but it’s the connections and relationships and what is generated out of those connections that also makes my head spin. Now put this very complex system in a situation of scarcity. This has disaster written all over it.

The alarming fact is that the direction the current climate of education in this province is heading, will require people to become even more competitive over the limited resources. Money won’t solve all of society’s problems; however, chronic underfunding is definitely the fuel to this education fire…amongst other things.

Brainstorming exercise:

Let’s list all of the resources that someone seeks in the education system. (I will list a few, but really, I am hoping to encourage the conversation and for people to start making their own lists)

Resources in education. (Staff and students)

  • Social relationships- support, sense of belonging, attention, power, purpose
  • Mental stimulation, communication, information, choice, adequate training, knowledge, context & meaning…blog about context and meaning for students coming in the near future!
  • Physical space, food, water, access to washroom, fresh air, safety…and yes all of this applies to staff too!!
  • Access to tools to complete tasks/goals with success
  • Time to process, time to complete work, alone time, enough sleep – proper work hours (homework or class planning)
  • Currency – (staff) to access resources in their personal life and avoid scarcity

Now take all of those resources to function. Put someone in the situation of abundance. All the time in the world, lots of attention, all the communication and information they need to understand their environment. Now take the minimal of what you need and cut it in half.  Survival mode kicks in. You will have very different people on your hands.

If people have options, they will leave the system. We all have our breaking point.

Who is controlling the resources to this system?

It’s not the school districts. They may be managing…I mean struggling, with the system, but they aren’t the Wizard of Oz at the end of the road. The Ministry of Oz is hiding amongst ambiguous unanswered questions in their huge castle.

Provincial systemic issues, are going to need a provincial intervention approach, and will require a provincial response.  Let’s start with some resources, shall we? Adequate funding please.

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!

Expectations of Parents Behaviour

Why are so many parents losing their shit?

I have heard many people admit that they have sent emotional emails, or that they are labelled as “rude” or a “tense advocate”. I have heard of parents being banned from schools or they have had to pull their child out of their school or even the district because they are viewed as too emotional. When parents admit that they have “lost it”, and sent angry or emotional emails, it’s admitted as if its some shameful act. I will admit that I too have sent my share of emotional emails. So why are so many parents losing their shit?

This is a symptom of a much larger problem. This is what happens when there is no accountability for decisions made from district administration or Boards of Education. It’s when administration have all the power and don’t need to do anything they don’t want to.  It’s when parents are bullied, have fear of retaliation, or are served emotional abuse on a plate with a smile. When there is a fish flapping around and behaving strangely, we all point at the fish and wonder what is wrong with them. No one looks at the pond. Let’s take a look at the pond, shall we?

Parents are legally required to send their child to school.  Parents need to work and fit in daycare schedules to cover their working hours.  Transportation from home to school comes into the decision-making filter and everything needs to fit perfectly. Now let’s say school is turning into a disaster, and as a parent you need to advocate. This is not a minor issue you are dealing with and you feel that your child’s physical or mental health is being severely affected. The stakes are high. This is after all your child.  However, you are being ignored by administration. You are being lied to by administration.  The problem is not being fixed, and they don’t have to do anything about it. They are gaslighting you. You feel you are an ant under a magnified glass and they are just watching you squirm in the sunlight. And. There. Is. Nothing. You. Can. Do. About. It. And now you send an email and lose your shit.

Parents, don’t feel bad. Your reactions are normal and given the situation, one could argue even healthy.  The amount of self-regulation that I have had to go through to send emails to the district, is intense. There are times, I literally need to leave my home to get myself away from a computer. They are getting a fraction of my true feelings and intensity.  It’s normal that one squeaks through, every now and then.  It’s not you. It’s the pond.

Now, you have sent your emotional email. I have heard stories that as part of their strategy, parents have experienced the districts using their emails against them as emotional blackmail.  I have never had this experience, thank goodness. I would snap. I’d think you would see me on the 6 o’clock news looking like I popped out of a zombie movie ranting about the education system. There is a definite abuse of power and toxicity about the lack of protection vulnerable children and families have in the education system.