dyslexia

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Pasta – With a Side of Perspective and Persistence

A dyslexic, an Aspie and their mother are sitting around a table…

That almost sounds like the start of a bad joke. But it isn’t. It was dinner time in our house last night.

On most weeknights, dinner is a rushed affair in our house. We eat early so that anybody who has an evening practice, rehearsal, scout meeting, etc. heads out with a full belly. The early meal means generally my husband isn’t home from work yet, so most weeknights it is just the kids and I around the table.

Last night, as the three of us ate our buffalo chicken pasta, my son asked my daughter a series of questions about dyslexia – what do words look like to her, does she see letters backwards, does it make her sad that she has to struggle to decipher text, does it make her nervous to use the tools she’s been given to help in class?

In response to that last question – does it make her nervous to use the tools she’s been given to help in class? – she talked about how some of the kids in her class complained to the teacher that she gets to use something that they don’t. And that one statement provided an opening for the most amazing series of statements from my son…

“They’re just jealous. But you shouldn’t care. You see the world differently from them, and that’s ok. It’s just who you are.  Look at me. I don’t like to think about my anxiety and panic disorders as a mental illness. They are just a part of me, and that means I see the world differently. And my autism isn’t bad. It helps me see things other people can’t see. It’s part of me, and I also think it makes some people jealous of me. Just like some kids in your class are jealous of you. It’s ok. Just be you. Yum. This pasta is good.”

And then they started talking about a YouTube channel they both follow as they finished their pasta.

I don’t know how long those thoughts have been running through his heart and head. I don’t know what prompted him to speak them aloud in that exact moment. I don’t know when or if I will ever again hear some version of those statements come from his mouth.

I do know that in  hearing him say those things – “It’s ok. It’s part of me. Just be you.”  – I was also hearing that somewhere in his heart and head he is developing perspective and persistence. I do know that in that moment he gave me hope. I do know that, even if it isn’t always apparent, he is becoming increasingly comfortable with who he is and the space he occupies in this world.

The words are simple – “It’s ok. It’s part of me. Just be you.” – but the message is universal. We don’t always get to choose the circumstances that shape our reality, but we do get to choose how we respond. My husband and I work hard to make sure both of our kids are developing the persistence and perspective they need to thrive in life. We work at it everyday, but we aren’t always sure we are getting through. At dinner last night, I was certain that we are getting through.

 

 

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The Letter I Delivered Today

The premise of this blog is that we all – every single person – faces internal challenges, struggles and obstacles. That is reality. I started back in April writing about how our family  is so much more than you see on the surface. Much of what we deal with on a daily basis stems from my son’s struggles with anxiety and panic disorder, but he is not the only one on our family who struggles.

Our daughter is in 4th grade this year. We have suspected for a long while that our daughter may have dyslexia. Every year since Kindergarten we have asked some version of the question “could she be dyslexic or have another learning disability?”, at parent-teacher conferences. Every year since Kindergarten, her teachers (all of whom we have LOVED) have given us some version of the answer, “she is approaching grade level standards, she should be fine – and just because she isn’t her like her brother, you don’t have to assume there is a problem.”

Her brother was an early and prodigious reader. He basically taught himself how to read at age 3 and hasn’t stopped since. He inhales text and has remarkably accurate retention of everything he reads.

Our daughter has never enjoyed reading. It has always been difficult for her, but she is a fighter and she is incredibly intelligent, so she has compensated and persevered. Through lots of hard work, she has made it appear that there isn’t  problem.

Appearances can be deceiving, and eventually facades crack. One week into the brand new school year, she cracked. Every day this week there has been a tearful explanation of how she “can’t” read like everybody else and how “dumb” she feels. She is coming home from school mentally exhausted from the effort of trying to keep up so nobody “knows how I can’t read.”

Heartbreaking.

To be clear, it’s  not that she “can’t” read. She can read. And she can at a level that the state of California deems to be “approaching grade level” for a 4th grader. While there is nothing wrong with that level of reading fluency for a 9-year-old, it is incongruous with her achievement in other areas. And even more startling is how scared and upset this is making her.

We have suspected for almost 5 years that there is a problem. We are now certain that there is a problem, and we need the school district to do something about that.

The school district was less than helpful in getting our son the assessments, support and accommodations he needs to be successful in school. We aren’t big fans of the special education department at the school district. My head hurts just thinking about how hard it was to get my son what he needed. The last thing we want to have to do is deal with them again – but we will.

This time though, we have the benefit of hindsight. We know what we would have done differently when we started down the path of getting assistance and accommodations for our son. So this time around we started the process with a letter. A letter that makes it clear we are advocating for our daughter, we know what the district is obligated to provide under state and federal law, and we aren’t going to accept anything less than everything the law dictates.

The letter is full of references to the Individuals with Disabilities Education Act (IDEA) and section 504 of the Rehabilitation Act of 1973. The letter shows our understanding of the timeline that the district must follow based on those laws, and indicates that we will be holding them to that timeline for the assessment and plan. The letter states that in addition to the typical school district evaluations, we specifically request that all of the skill subsets indicated in a possible dyslexia diagnosis be evaluated including: spoken language skills, word recognition, decoding, written spelling and expression, phonological processing, rapid automatic naming, reading fluency, reading comprehension, and vocabulary knowledge. And the letter ends with us letting them know that we are not opposed to any general education interventions (her teacher has already begun trying to accommodate her in the classroom, because she is amazing!). Those interventions may be done simultaneously with the assessment for special eduction, but should not slow down the mandated time lines for assessments under IDEA.

That letter was not pleasant to write, but it needed to be done. I hand delivered that letter to our school principal this morning, and emailed my daughter’s teacher to let her know the letter and the request for assessment were now official. We’re on the clock. And now we wait.