Advocacy

Imagine you have a job that requires you to do increasingly harder tasks each day that you go there. Let’s say you are working a desk job but every day you are expected to do 50 sit ups. You haven’t done a sit up in years and you have a bad back from a previous injury. But everyone is required to do it so you give it a try and you maybe get in 2 or 3 before you give up. Your boss critiques your performance and gives you a Level 1 – the worst level there is. He also decides that because you can’t do sit ups you probably can’t do a lot of other activities the job entails. You sense his disdain and can’t help but feel slighted in your job. I don’t imagine you are going to happily report to your job each day. You probably will use a lot of sick days and try to find ways out of doing the sit ups. But none of it works and now the sit up requirement gets higher each day and you fall further and further behind. You want to be able to do the sit ups (though you secretly think they are stupid) but your back injury prevents you from doing so. Your boss just tells you to stop complaining.

Or imagine you need glasses. You have been wearing them since you were a child and there is no way you can see without them. You start a new job and are told you are not allowed to wear glasses or contacts as it gives you an unfair advantage over your work mates. You know this is ridiculous and try to argue your point but in the end you give in. You report to work and are shown to a desk. They promptly give you a pile of files that you need to work on. Only you can’t see. Day after day your files pile up. You are consistently being called into the boss’ office to explain why you are not completing your work. You try to explain about the glasses but you are dismissed as making excuses. You hate going to work each day.

The first two examples seem far fetched, ridiculous even. But what if it wasn’t so ridiculous? What about this scenario:

You have a Learning Disability and Attention Deficit Disorder (ADD) and you enter a new grade at school. You and your mother have both informed the teacher in person and in writing about your unique learning needs as a result of these diagnoses – things like needing extra time to write a test or giving fewer questions for homework or needing technology in order to access the curriculum.  Your teacher decides you are exaggerating your needs and that the accommodations you are asking for give you an unfair advantage. You struggle the entire year, routinely receiving the lowest levels of grades for work that you could have gotten top marks for had you had the accommodations. You start hating school because every day is hard and you feel like you are a disappointment to everyone.

 

Every day my youngest son has attended school he has faced obstacles. He had unique learning needs which, if accommodated, could lead to success. Let me be clear here, we did Psychological testing and he came out as average to high average in all areas of cognitive functioning (same as an IQ score). What the testing told us was if he had the right accommodations he was capable of average to above average grades. Instead each day he received the lowest grades because he wasn’t given the proper tools to get the job done. Imagine how you would feel if you repeatedly were given the lowest marks, made to stay in at recess to finish work and sent to the office for unfinished work. Imagine you overheard staff talking about how you are never going to “make it” in grade 9. How stupid would you feel after all of that?

I let my youngest son down. I had no more fight in me after having fought for his brother. I had a few meetings with the teachers and reminded them of the accommodations in the Psychological report. But I didn’t follow up enough and he fell through the cracks. One particularly trying school year his teacher, who was forever disciplining him for his disability, decided to separate him from most of his peers and put him in a remedial group that an Educational Assisstant taught. You read that right, an EA was supposed to be teaching the kids that needed the teacher most. When we found out it had been going on for years, my youngest thought that we knew so never brought it up. When we brought it to the school’s attention they balked and threw out a bunch of platitudes and in the end they continued to do exactly what they had been doing. At that point we told our son, be polite and follow the rules, but we were looking at Grade 8 as a write off. I know some wouldn’t agree with us doing that but the boys self esteem was so far in the crapper that he needed to know that this situation was the schools doing not his. Now school is about to start and he will be in high school. High school was very good for our oldest son so we are very much hoping that our youngest is able to find his niche and get the accommodations he needs.

As a child I found school relatively easy and it was my favourite place to go. I wish that my children had a different experience with the school system. Even with accommodations school is still hard for them. Without them it is impossible. We shouldn’t be sending our kids out into the world to do impossible things. How cruel.

September 3, 2017

Impossible Things

Imagine you have a job that requires you to do increasingly harder tasks each day that you go there. Let’s say you are working a desk job but every day you are expected to do 50 sit ups. You haven’t done a sit up in years and you have a bad back from a previous injury. But everyone is required to do it so you give it a try and you maybe get in 2 or 3 before you give up. Your boss critiques your performance and gives you a Level 1 – the worst level there is. He also decides that because you can’t do sit ups you probably can’t do a lot of other activities the job entails. […]
August 4, 2017

A broken ankle and a broken system

Just recently my oldest son was injured playing soccer and required hospitalization. He injured himself playing on the Special Stars team for individuals with Autism. I only tell you this as it plays a key part in the story. Otherwise it wouldn’t matter what type of league it was. But for this story it does matter. When the ambulance attendants came (after almost 2 hours – totally a different story) they asked about medications and medical conditions. I told them all his medications and that he has Autism, Intellectual disability and Bipolar disorder. He has more but these seemed key to the circumstances. Even as I said Intellectual disability I felt guilty – I hate the term, it used to […]
May 22, 2017

Becoming a Self Advocate

Months ago my youngest, Jeremy, read a book called Beyond Ok by Susan Schenk. It resonated with him and he was eager to discuss with his tutor about his own learning and what works best for him. We had been trying for years to explain learning disabilities and how they affect him. We tried to determine what strategies would work best for him but he remained silent and reluctant to discuss it. We were at a loss. Then along came the book and he just opened up. I read it too and we had some good discussions about it. He was doing a book talk on her book so he reached out to Susan on Facebook and she was kind […]
May 9, 2017

Mental Health Awareness 2017 – Part 2

So I left off with Adam and I becoming a couple.  He came into my life at just the right time. I had a new found love and respect for myself and I believe that is what drew him to me (plus my flirting wearing a low cut sweater might have helped a little). We were engaged after four months of being together though we didn’t actually get married until two years later in 1995. Shortly after we got married we started to try for a family. I have Polycystic Ovarian Syndrome (PCOS) so becoming pregnant is not easy. We eventually got in to a fertility specialist and even had an emergency round of InVitro fertilization (IVF) before we decided […]
April 21, 2017

Graduation

The back of one of my Corbin’s graduation announcements. Jeremy is disappointed as I always said I would write a “Suck It” announcement. He thought I meant that I would literally write those words. He makes me laugh.
April 14, 2017

Into the Woods

I stood there and watched him run into the woods. I didn’t follow as I knew I would never be able to catch him. I was beyond exhausted. Behind me I heard walkie talkies going off as three staff bolted out of two buildings and ran into the woods after him. I found myself fighting back tears. The staff beside me put her hand on my shoulder and gently said “Don’t worry, we’ll get him” and I began to sob. “It’s not that” I said “it’s that I don’t have backup staff at home. I don’t even have one staff. How are we going to manage when he comes home?” I was standing outside one of the units for inpatient […]