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.

In Case of Emergency

Yesterday was the first day of school. And predictably at the end of the day the kids came home with the stacks paper – some of it actually needed my attention, and much of it went straight into the recycling pile.

Among the items that needed my attention was the reminder to send in an emergency kit for each child. Living in CA, emergency prep means earthquake prep. Our school district requires each child have an emergency kit supplied by the family that includes basic essentials for up to 48 hours.

There is an option to either purchase a pre made kit from the school, or supply your own. I purchased the kits for both kids when they were in kindergarten and we just re-use them each year, restocking when perishables hit their expiration date. So as I was going through the folder full of paper my son brought home and saw the notice listing the items that should be included in an emergency kit, I almost didn’t look at it as I moved it the recycling pile. But then a hand written note on the side of the page, and I paused to read what it said.

The note had been written by my son, “Include 48 hours of anxiety medication in emergency kit.”

I asked my son if his teacher had told him to write the note, and he said no. It was his idea.  He told me, “My medication only works if I take it every single day. If something happens and I get trapped at school, I want to have my medication there.”

I was momentarily stunned.

I asked if getting trapped at school was something he worries about, “No Mom. I do worry about a lot of things, but not about this. But we do live close enough to the San Andreas fault that a major earthquake could happen. If it happens while I am at school, I want to know I have everything I need until you can get to me. The roads could be really messed up. It’s possible that I could have to spend a night at school.”

Ok. So he wasn’t worrying. He was being practical. And that means as much as he loathes going to the psychiatrist and to the psychologist, he knows that the medication is helping him. He still won’t really talk to us about what he is feeling or experiencing, but he told me so, so much when he said “My medication only works if I take it every single day. If something happens and I get trapped at school, I want to have my medication there.”

With those two sentences, he told me he knows how far down he had spiraled before starting the medication, and he told me he feels better on the medication. With those two sentences, he told me he knows he needs to do the work to help himself. With those two sentences, he told me he is beginning to self advocate. With those two sentences, he gave me hope.

Clearly I do not want to see a day when there is an emergency so massive that he does get stuck at school, but if that day comes he will be prepared because he was brave enough to acknowledge his truth.img_6020