What It Takes To Survive

It’s a sobering thing to have your child reach an age where in their maturity they begin to open up. It can be even harder when that child is dyslexic, and what they begin to open up about is their dyslexia and the way they’ve been treated inside education.

It started within the last year with small questions. The first was, “Mom, are there any teachers I’ve had that you did not like?” I asked why he would ask me that question. His response was, “I know which ones hated me, and I suspect you did too, and if you knew, I bet you didn’t like them.”

Like I always hope people behave in a divorce, I never spoke badly of a single teacher or administrator in front of my son. While I was fighting for his right to an education, I didn’t want my child to a) fully know what I was up against, or b) accidentally tell anyone what I really thought of them. When our children are small we all know this is a risk of their sincere and sometimes untimely honesty. After all, I will never forget hiding my father’s wallet and after my parents searched the house for hours being forced to call my Christian school principal and have her pull me into her office to talk to my parents and me revealing, in front of her, that I hid the wallet under the pretty crystal whiskey holder. Since this is a favorite tale of my parents, I didn’t want a repeat with my child.

That being said, I said, “Ok, baby. Which teachers hated you, because you will go first, and then I’ll tell you the truth and go second.”

“The first one I remember is my second grade teacher. She never liked me. From day one it was obvious. I would catch her looking at me in a certain way. It was disdain. Then the weirdest thing happened, mid year she got nice but it was fake. It was over the top niceness like she was afraid of something, or was it that she learned to fear you?”

“Well, she and I had a very ugly confrontation before Christmas. My issue was that she failed you in reading, but she didn’t update the grade book until the last day of school, after 5 PM, right as Thanksgiving break started. You need to understand that six months earlier you couldn’t read at all, and we had just spent $20,000 at Lindamood-Bell to get you reading, and reading on grade level going into 2nd grade, and with a horrific curriculum, and despite your 504 plan, she FAILED you in reading, then disappeared for a week. There had not been a single conversation so far that school year other than her sitting in your 504 meetings with a smile on her face acting like everything was great, then she FAILS you? No, I wasn’t having that, and I told her that was NOT how that was going to go. The hardest working kid in the class was NOT getting an F, because I KNEW how hard you were working.”

“That makes sense then.

I know both of my 5th grade teachers hated me too.”

“Yes, they did. They hated me too. I tried, I genuinely tried, but they never gave me a chance. Every time I opened my mouth they rolled their eyes and had their minds made up that I just needed to go away. The thing that pained me the most was that was your 2nd wall because it was your dysgraphia wall. The garbage Units of Study curriculum our horrific district uses never once taught grammar, syntax, or anything else. The author wanted teachers to treat every child like they’re Charles Dickens and that you’re capable of creating magnificent prose, just because someone tells you that you’re a writer. Because of your IEP you had speech to text, but they accused you of fu**ing off in class on a test because your answers on a test looked like:

(UERKNKJHI&&)(O+#)$O)(Y#HIUJBNF?LKSJDFP*&YO*&Y#HNLKNMLFKM

I had to do significant research and talk to numerous people to find out it was a by-product of speech to text picking up all sounds and not being able to differentiate what YOU were saying from the sounds around you and so it spits out garbage. Well, guess what? Their solution to this problem was to make you sit outside in the hall to use speech to text. Alone. Isolated. Removed. We said no, and bought you Bose noise cancelling headphones to keep you inside the classroom. Despite this they didn’t change your test grade from an F. They intentionally left it there to spite me, even though they KNEW it was a false output because of the tech THEY gave you to use because your IEP demanded it.”

“They were just mean and never cared about me. They never cared if I learned anything.”

“I know.”

“Was there anyone else?”

“Yes.”

“Who?”

“Your 1st grade teacher.”

“I don’t remember her.”

“Good. She was awful. The amount of attitude she would pour over my head in her INDIGNATION that YOU WERE THE PROBLEM and the fact that HER ASK WAS NOT TOO MUCH TO EXPECT OF YOU was just too much. I almost gave her a piece of my mind, but the problem was all of your classmates were standing there and I respected their parents too much so instead I left and sat in my car for 2 hours and cried.”

“Well, just goes to show you that she didn’t understand anything about dyslexia.”

“Well, that was just it. She had the gall to tell me that she had once been dyslexic, but her parents got her the help she needed and she wasn’t dyslexic anymore. That told me everything I needed to know, but if I knew then what I know now, that whole situation would have gone very differently.”

Then there was this conversation.

“Mom, you know there are things I don’t tell you.”

“Not following, babe. What kinds of things?”

“About my dyslexia and school.”

“I need you to tell me.”

“No. It will hurt you too much.”

“Um, now you ARE going to tell me.”

“Ok, but don’t blame yourself.

I hate that the second someone hears I’m dyslexic they automatically think I’m stupid.” His face gets red as anger washes over him. His fists even clench. He set his iPad down so he could gesticulate with his hands. “It’s the most infuriating thing ever! Instantly they talk to me in a slower voice and use simple words like I can’t understand anything! Everything they say to me is filtered through this “oh, he’s stupid” lens and I immediately see it and I just want to yell at them how ignorant they are and to STOP!”

“I know I talk about your dyslexia way more than I should and I am certain I feed that. I’m sorry.”

“No, Mom, it’s NOT YOU! It’s teachers, principals, aides, everyone! Until they actually get to know me they truly believe I’m stupid and it’s bullshit, Mom!”

Then one day I want him to listen to Emily Hanford’s Sold A Story and we can’t get more than 30 seconds at a time into episode one as he yells at the podcast about how no one understands dyslexia, no one knows how to teach, how no one understands how the brain learns to read, how everyone thinks he and everyone like him are just problems that need to go away, and how no one should dismiss him or anyone else just because they’re too ignorant to understand. For the record, we never got more than 6:38 minutes into episode 1 because of how angry it made him.

His 8th grade year begins to approach the final months, and suddenly his stomach is a disaster. It was so bad he is frequently missing school, and if he’s at school he’s texting me begging me to come get him, because of how upset his stomach is. His migraines, which had decreased in volume, start ticking up too. This reaches a level where we start trying to diagnose him in partnership with his pediatrician, yet nothing is turning up any results. The next stage was exploratory surgery, but then the school year ended and so did the stomach aches and migraines.

Our plan for over a year had been that 8th grade would be his last in our public school district. They claim to be A+, which is even a part of their professionally designed logo, but truth be told it’s a monumental disaster. Their complete and abject hatred of special needs children is next level. I’ve represented other families, dyslexia and other special needs, as an advocate within this district, as well as fought for my own child for 7 years, and it’s truly just next level. While we had, for a brief period, had a supportive team, it didn’t change the day to day reality of what he faced in the classroom with the judgment and lowered standards.

Then this conversation:

“Baby, you have a 132 IQ. Do you have any idea what that means?”

“Don’t tell me I’m smart.”

“Why? You are incredibly smart! Gifted even! You do realize you are smarter than MOST people you’re going to come across?”

“I don’t want to become egotistical, besides, that’s not what I’m experiencing in school.”

“I know, but you also know it’s because of crap curriculums and bs dogma.”

“Yes, but that doesn’t change anything. It doesn’t change my reality.”

Then this, just two days ago…discussing with my friend Lauren a conversation she had with her son, about how he lost fun mom while she fought for him.

“Baby, what do you think of what Lauren just said?”

“It’s true. I’ve not had fun mom in years. You don’t play games with me unless we’re with other people. I can’t remember the last time we played a game. The only time I remember is when we’d go to the beach or on vacation. It’s ok though. I accepted it a long time ago. What people don’t understand is that we, and I mean dyslexic children, are dealt a shit hand. Dyslexia isn’t a gift. That’s a lie. It sucks. I understood that you had to fight for me and so you fought and I’m grateful, but yes, it took away my fun mom. I had to grow up faster than other kids. All dyslexic children do. Our childhoods are taken away. We are in situations where we face judgment and that aren’t right for children to be in, but to SURVIVE it, we have to grow up fast. It’s like sending us to war without any knowledge of how to use the weapons! That was my reality.”

I couldn’t respond. Driving down the Westpark Tollway, I sobbed uncontrollably for a very long time. My grief consumed me. I’ve not cried that way since my Grandmother died three weeks before my son was born. My son scratched my head and said, “It’s ok, Mom. Let it out. It’s ok.”

Part 2 coming soon.