Wednesday, May 17, 2017

What it's like being a dyslexia mom

Everyday, you send your child into harm and trauma.

You send him to people who are violating the federal laws set up to protect him.

No one believes you.

Your friends and family look at you blankly and assure you that the people harming him are HEROES. You are just being Melissa, overreacting like you always do. You are unreasonable, unfair, crazy.

You don't sleep at night because you are so fucking terrified about what will happen to him after you die.

You are all alone, screaming into the void.

You can't do it anymore, but the cost of your failure is his life.

Days since last panic attack: 0.

Monday, May 8, 2017

Eres una madre muy valiente

Leda is one of the smartest people I know.

She went to a one-room school in rural Nicaragua. About the time she would have she graduated from high school, she had her only child--a son. She was a cleaning lady at the field station where Rob and I lived for a year when I was doing my dissertation research. Leda washed sheets and scrubbed toilets. Her life couldn't have been easy.

Leda didn't speak any English, but we never had trouble communicating. She was perceptive and could read my body language, and somehow she always knew what I meant even if I didn't use the right Spanish word. She was distant kin to Simeon, the volcano guide who sometimes helped me in the forest.

She never asked me for anything, except some batteries for her flashlight so that she could safely walk home from work one evening. It starts getting dark in Nicaragua by about 6pm, year round. And it is not like there are street lights, or streets. The "road" through the village is more rugged than some of the trails I run here in the foothills of the Rocky Mountains. You'd want a working flashlight if you were walking on them past dark. In sandals.

Years later she asked me for 20 dollars when I saw her in Managua and she needed the money to buy life-saving medication. She was very ill. Rob and I bought her dinner that night too, but she didn't feel much like eating.  She understood me better than I understood her-- I'm still not quite sure what was wrong, and I didn't pry.

She recovered. The last time I saw her, she was healthy and well.

Leda is one of the reasons why my life was never the same after Nicaragua. I remember coming "home" to a strange world of cars and grocery stores and microwaves. I remember watching the laundry spin round and round in the washing machine at our house in Urbana, while tears streamed down my face. What would Leda think of this? She washed bedsheets by hand, on a washboard, in a sink made of concrete.

Leda figured out how to use a computer and type. She figured out how to get a Gmail address and a Facebook account. She figured out how to use Google Hangouts and Facebook messenger. We have kept in contact for more than 10 years.

Shortly after the election this past year, she texted me, asking in Spanish if my family and I were safe. I replied that we were. Leda and I had never talked about politics or religion before. I could tell she wasn't sure where my beliefs fell on the political spectrum, and I also couldn't tell hers. So I asked her what people were saying in Nicaragua about the results of the election. Her reply was something like, we are afraid many will suffer. I said, it is the same here. Then, because I was pretty sure we were on the same page, I told her, "I voted for Hillary." She replied with a thumbs up and smiley face emoji. I wondered if both of us had just been placed on watch lists. I figured it was worth it. She continued, saying that she did not have much, but if my family was ever in need, she would share with us all that she had.

I guess she never forgot that 20 dollars I gave her for medicine.

Leda also read my Facebook posts that described William's struggles with dyslexia. She looked up "dyslexia" (dislexia in Spanish) and learned about what it was. This is more than any of Will's teachers at school have done. She wrote to me and said she was so sorry for our difficulties and that she wished only the best for Rob and me and Will. I told her thank you. She wrote, "Eres una madre muy valiente."

I sat there with the phone in my hand, reading over her words again and again to make sure I understood what they meant. I was ugly-crying before I even knew it.

William had just gotten home from school and was playing with some cars next to me. "Mommy, what's the matter?" he asked. I tried to explain that Leda had written something very kind to me and it had made me cry.

"What did she say?" he asked. I showed him the phone, and I read the words in Spanish. "What does that mean?"

I told him, and then he smiled the sweetest little smile and crawled into my lap. He pressed his face against my face and whispered so that I could feel his warm breath in my ear. "She's right," he said.


A lot of people have called me a lot of things since this whole dyslexia fight began. It hasn't always been kind. Those who are supportive tend to say things like Leda-- they tell me that I'm brave or strong for choosing to fight. I appreciate this, I really do, but I don't feel that it's true. 

I am the least brave or strong person I know. And I did not choose this fight. I am backed into a corner and my child's life is on the other side. I will eviscerate anyone who stands in my way, even if it kills me.  And it will kill me. This isn't what I want. This isn't what I spent my whole life working for.  But I have no other choice. 

A few weeks ago, I contacted a local dyslexia parent support group and told them that I was considering going to speak at a school board meeting about the lack of appropriate intervention in schools and the life-long negative impact this has on dyslexic children. A few other mothers said they would go too. One of the mothers mentioned our intention to the assistant superintendent, and the reaction was very swift. Several school district officials offered to meet with us and discuss our concerns immediately. Better to keep these comments in a private room, I suppose, than in the publicly available minutes of the school board meeting.

We took them up on their offer, knowing we could always approach the board afterwards, particularly if our meeting with them did not go well. Several parents attended. I did not smile at any of school district officials. I couldn't. These are the people who are directly responsible for throwing my son's life away. These are the people who are throwing away the lives of as many as 6,000 children in the school district. Dyslexia is real, and it affects 1 in 5.

The assistant superintendent was at least somewhat receptive, which is a vast improvement compared to anyone else I have dealt with in the district. He seemed motivated by the possibility that our school district could do better than Boulder, which initiated a pilot program offering Barton instruction to 100 dyslexic kids in school. Our district currently does nothing but deny that dyslexia exists. He seemed intrigued that by providing appropriate instruction, we could lower the appallingly high drop out rate and epidemic of adolescent suicides in the district (depression, anxiety, dropping out of school, and suicide are all higher in unremediated dyslexics). He said he would get back to us within ten days. The clock is ticking. The lives of thousands of children hang in the balance.

After the meeting, the other dyslexia parents stood around, rehashing and decompressing, and marveling at how similar all of our horrifying experiences have been. There may be no other human universal. Dyslexia is the great equalizer.

The other parents all had children older than Will, and their concern was mainly about their kids entering middle school in the next year or two. Even though Will is a bit younger, it occurred to me-- none of the changes we proposed would in any way benefit him. We asked for mandatory kindergarten screening and at least one dyslexia specialist in each elementary school. I specifically demanded Orton-Gillingham instruction for every child identified who could benefit from it. 

Even in the extremely unlikely scenario that any of these proposed changes would be put into place during the next school year, Will would be in third grade. And we've already paid thousands of dollars in private dyslexia tutoring to save his life. The effort would be put towards identifying the younger kids and providing them with intervention. Will would be past it. Shit out of luck.

I realized at that moment, I wasn't doing this for him after all. It is too late for him. I'm doing this for the other kids, for the other dyslexia moms, so that they never have to go through what I have. 

It took a minute or two, for all of this to sink in.

There's this ethos among special-needs moms, or maybe all moms, or maybe all women in general, not be be seen as complaining. I've lost friends and made enemies for speaking up about what the schools in our country do to dyslexic kids. Nobody wants to go through this, to be seen as such a negative person. We'd all rather believe that schools are good, and teachers are heroes. It's easier that way. It prompts us to silence, but silence is acceptance, complicity even. And it makes every single dyslexia mom have to reinvent the wheel. We've known for decades what instructional approach dyslexic children require in order to learn, but schools simply refuse to use this. The stories dyslexic people tell about their experiences in the 1950's, 1960's, are no different that what is happening today. We've lost generations of brilliant people who were never taught how to read, and it is time for that to stop.

I'm not strong, I'm not brave, and I absolutely can't do this alone. Who is with me?