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Sunday Reflections: Everything I Learned About Advocating for My Dyslexic Child I Learned by Being a Teen Librarian

As a teen librarian and the mother of a child with dyslexia, I have had to learn to be a good advocate. I’ve been reflecting on advocacy a lot these past few days as I had to put on my advocacy armor and fight hard for my child’s education as she was recently put in an inequitable situation. And anyone who has a child with any kind of special needs is used to advocating, trust me.

Background: Thing 2 was diagnosed with dyslexia in the second grade. We had to fight long and hard to get the school to test her. When we finally did, we were able to create a 504 plan and in this school district dyslexic kids are pulled out of class for an intervention called MTA. She was supposed to be in the MTA plan from the time she was diagnosed until she completed 6th grade.

Unfortunately, due to over crowding in the schools, the district re-arranged the school system in this district and they created a 5th and 6th intermediate campus. In fact, they created two of them and this year Thing 2 started 5th grade at one of those campuses. We soon learned that while the other kids in her school would get to take an exploratory class of art, music, band and STEM, children in the MTA program would not. This means that for the next 2 years my child would not get to take art, music or STEM with her peers and she was being denied the same educational opportunities and advantages as her peers. And make no mistake, art and music education is an advantage that should be afforded to all children. It’s not optional, it’s imperative. There are a wide variety of well documented advantages to art and music education.

I had a lot of concerns regarding the lack of art and music education in my child’s curriculum. For one, as a child with special needs, she was now being put into a more rigorous intense and rigorous academic program with no time built into her schedule for creativity, calm and potential success. These kids were now suddenly going to be without a recess (another issue, for sure) and they were going to have to be fiercely and academically focused for 8 periods a day. In addition, she would be missing out on the advantages that come from having art and music to round out your curriculum, she was being singled out and left out from her peer groups. But also, my kid just really likes art and I wanted her to have an opportunity to learn more about it.

To make matters worse, I learned that the 2 intermediate campuses were not handling the MTA program the same and that the kids on the other intermediate campus were able to take these classes. So last week I once again put on my advocate hat and fought to get my child the education that she needs, deserves, and is guaranteed by law. I went through several steps that were going to talk about in a minute and in the end, the school agreed to change their approach so that my child got the MTA intervention that she needs AND an opportunity to do art, music and STEM education.

So here are 5 of my do rules when it comes to advocating for youth . . .

Do a Gut Check

I’m not going to lie, when I found out how the system was set up and how it was denying my child certain educational opportunities, I was instantly in a blindingly hot white rage. This is something that happens to me when I feel that an injustice is happening, which is why I personally always stop to do a gut check. My gut instinct says this is wrong, and in this case possibly illegal, but I wanted to be sure. So I did what I always do and called some of my peers and explained to them what I was upset about and asked them if I was right to be upset. I highly recommend having some trusted professionals in your pocket that you can reach out to in situations like these to help talk you through a situation and make sure you’re right to be concerned before engaging. This has saved me in many of my jobs. Sometimes my peers have said yes, and I’ve gone to admin and fought and sometimes they have helped me put a situation in perspective and while I vented to them, I didn’t approach the subject with my admin.

In this case, I called several teachers that I knew and explained my worries and they said yes, this was not the correct way to handle an intervention and that I was right to be upset and I should definitely pursue it. So having done that gut check and being affirmed that my concerns were valid, I pursued it. Doing a gut check always helps me to calm down and get focused, it also helps me to get to that place where I can approach a situation in a more professional manner and not get myself fired or thrown in jail.

Do Your Research

I then went onto the next stage, which for me always involves research. I got together information about what was and wasn’t legal in a 504 plan. I got together research on the value and benefit of music and art education. I found out how to contest what I thought was a special education violation. I asked my teacher friends the right terminology to use. I researched and put together a solid case that I could present that was well reasoned, supporter and clearly articulated. When I am asked to talk about an issue I’m advocating for, I want to make sure that I know what I’m saying and the most effective ways to talk about it. Using the right terminology and citing precedent or law or statistics can help your case more than most people realize. Research is a key component of advocacy.

Do Your Best Impression of a Grown Up

I put all the information together and wrote up a letter making it clear that I was not going to back down and filed a formal complaint. I was clear, articulate, fierce yet professional. So although I cussed up a storm to my husband and it was clear that I was in a blindingly white hot rage, I wrote my letter in such a way that it was both respectful and had to be taken seriously. I was calm, respectful, but fierce. How you present your case can make or break it.

At one point as I talked in person to the vice principal I even said, “I’m getting really upset so I’m going to walk away right not but I need you to know that this is unacceptable and we are not done with this discussion.” I mostly walked away because when I get really, really upset I cry or dip into the swear jar and neither one of those were going to help my case so I walked away to give myself an opportunity to calm down and collect my thoughts. There are moments in life where protest and dissent are called for, the key is learning how to gauge what approach is needed for a situation. At work and when dealing with the school system, I have found that starting out from a place of professional respect and courtesy is a good tactic. But yes, there are moments in life when you have to escalate or take something to the next level.

Do Your Due Diligence

I have found through the years when advocating that it is very important that you maintain a paper trail. I like to put things in writing as opposed to having face to face or telephone conversations for this very reason. When I write a letter or send an email, I have documentation that proves I have approached someone with my concern and helps prevent denial on their part. And if someone does talk to me about the subject, I then write up a follow-up email saying something like, “thank you for calling me and discussing the matter I emailed about on <insert date here>. As you stated on the phone, you will do x, y and z by <whatever date>.” This way, I have documented what happened in the phone call or an office visit. I have found that some times people will call because they don’t want a record so that they have plausible deniability and it is very important that you do your due diligence and create a record. Trust me, sometimes you will need it. Having a paper trail is essential.

Do Your Part with Whatever Comes Next

Whatever comes next, be sure to do your part with follow through. If the situation is resolved in a satisfactory manner, say thank you. If you have agreed to do certain things to make a resolution possible, be sure you do those things as agreed and by any end dates you have said you would do them by. Whatever happens next, don’t let the situation fall apart by not doing your part. And sometimes, that means taking it up to the next level because you didn’t get a resolution at the first phase.

Sometimes, a matter is resolved quickly and satisfactorily, and this is great. There is much rejoicing. Sometimes it’s not and you have to decide what to do next. Sometimes this means continuing to fight and going on to the next step or next higher up person, whoever that may be. Sometimes, especially in work situations, this means asking yourself whether you can live with this new policy, procedure, or task and deciding to stay or seek new employment. This is a hard thing to acknowledge but sometimes, leaving a job if possible is the right decision.

I am happy to say that in the dispute with the school district about my child’s education, I was quickly contacted by the school and my child is now going to get both her MTA intervention AND to take music and art education. I am thankful that in this instance, advocacy worked. It doesn’t always. I was setting up for a long and hard fight and I am so glad that I didn’t have to. I can breathe a moment of relief because my child is going to get the education she wants, needs and deserves.

Over the years, because I have dedicated myself to working with teens, I have found that I have had to advocate a lot for our youth. I have fought against age discrimination, I have fought against LGBTQ discrimination, I have fought against racism and sexism, I have fought against classism, I have fought against policies and procedures that I felt were discriminatory. I have fought for larger spaces and larger budgets and new materials and services. Sometimes I have won and sometimes I have lost. Advocacy is part of teen librarianship, and parenting. I never knew how important it was to both of these roles in my life, but here I am, teen librarian, parent, and professional advocate.

Let me tell you a secret: They’re all worth it.

#MHYALit: Anxiety Disorder, My Son, and Me

MHYALitlogoofficfialThere are lots of things my son Callum and I have in common. We both like Converse. We love Harry Potter. We both wear glasses. And we both have anxiety disorder. While I often really, really hate my own anxiety, it has been extremely useful to have first-hand experience when it comes to needing to parent, support, and calm Callum.
 
 

A little history:

 

I’m 38. I’ve been medicated for twenty years. I probably should have been medicated for, like, ten years before that. I was a high-strung, anxious kid, a total perfectionist. My natural state was to work hard, expect to do well, and be hard on myself if I felt I didn’t do well on something. That alone made for plenty of anxious feelings. I heard the same things so many of us heard—You worry too much. You overthink things. It will be fine. Don’t worry about it. My anxiety would kick in when we had tests or projects. I hated being left home alone because I was so nervous about every noise (growing up as the kid of the high school principal, and having our house routinely vandalized didn’t help my fear). Through high school my anxiety worsened. I was fine speaking up in class about things if it was my own choosing, but being called on stirred up instant panic. But mostly, there was no obvious cause. No correlation. No clear trigger. I felt anxious all the damn time, for what generally felt like no reason. I got so used to having panic attacks–hearing my blood whooshing in my ears, feeling like I couldn’t breathe, feeling my muscles tighten up, having my heart race–that I kind of stopped thinking they were weird and just accepted that it was how I was built. I didn’t know anything different and no one was telling me that there was any other way to be. I sort of lived in flight-or-fight mode. It was exhausting.

 

And speaking of exhausting, I also kind of stopped sleeping. As many of us who suffer from anxiety know, bedtime is the brain’s favorite time to start screaming every single worry at you so loudly that sleep is impossible. I’d read, make mix tapes, write letters, work on my zine, watch tv, do anything but sleep. My dad would get up at like 5 and find me still awake downstairs and tell me how ridiculous it was that I was awake. Like I didn’t know. My first year after college, I worked overnights at a gas station (it was one of two things open all night in my tiny hometown, and in retrospect seems like not the safest choice I’ve ever made) simply because I’d then get home and be so exhausted I had to sleep.

 

I never really talked to my parents about any of this. I never really talked to anyone about it, back then. Outside of sometimes knowing someone who tried to kill themselves—or successfully did so—mental health wasn’t a topic that any of us were really openly talking about when I was in high school. But when I graduated high school and was going to move for college, I decided I had to do something or suspected I would spend my entire freshman year hiding in my dorm room and hoping my anxiety would just disappear. At my appointment I explained my symptoms and my doctor was like, oh, sure, you have generalized anxiety disorder. And panic disorder. And probably some social anxiety. Oh… yes. That all sounded right. I started medication and felt pretty much okay. I still had some panic attacks. I still was a worrywart perfectionist, but I don’t think medication can change that for me.

 

I changed medications a handful of times over all those years. Now, I take Elavil every night, have Klonopin for panic attacks, and have a beta blocker also for helping with panic attacks. My anxiety has remained more or less in check and predictable. I don’t like change or uncertainty. I don’t handle unexpected events well. My brain likes to grab onto small “mistakes” or hurts and put them on a continuous loop through my thoughts. When I had to add in new meds for my panic attacks, my doctor told me that my anxiety included “obsessive rumination,” which is exactly what it sounds like–the inability to stop thinking about things. You can image the implosion in my brain when my dad was killed in a car accident in December 2012. One of my biggest fears is driving. If I’m driving in a place I know well, I’m good. But I’ve always felt scared to be traveling along in this metal box and hoping everyone else in their metal boxes is paying attention. Having my dad die how he did was extra bad for my anxiety. I was literally incapable of being able to stop picturing what happened, especially after my grandma read me the coroner’s report (something I really wish she had not done, but she’s had 3 of her 4 adult children die–cancer, suicide, car crash–and I wasn’t about to shut her down). I was a wreck. My panic attacks became so bad I would shake like I was in hypothermic shock. I cried so much the salt from my tears made all the skin around my eyes raw for months. It was horrible.

 

It was around this time that Callum’s anxiety started to manifest. He was 6. He shares essentially all of my same symptoms and diagnoses. Thanks to my own experience, I started to notice his symptoms and began rounds with doctors. We did some testing and got him diagnosed. He has been in and out of therapy for nearly 4 years. He’s been medicated for about 1.5 years and his day-to-day anxiety is lower. His anxiety was getting in the way of his performance at school because he would spend so much of his energy being nervous and worrying about what was coming next that he would not be able to hear what was happening (his anxious mind basically worrying too loudly for him to catch instructions etc). He still has the occasional panic attack. But now he has an arsenal of words to use, techniques to try, and a steady stream of medicine to help even out those anxious moments.

 

Here’s the thing: I know how he feels. And I know the stigma that still exists. We have always treated his anxiety as just another part of him. We talk openly about it. We talk about how helpful therapy and medication are. We talk about how there’s no shame in saying that you have anxiety disorder (or any other mental health challenge). When we were at my best friend Kelly’s house one night, we were having a bonfire. It was late and dark and her son kept making howling wolf noises (something that has scared Callum since forever). Callum started to get uncomfortable and turned to me and said, “I’m having a panic attack and need to go home now.” Just like that. And as Kelly walked us back to the house, she said to Callum, “I totally get it. You know, I have anxiety disorder, too.” Factual. Open. Empathizing.

 

I never feel that my mental illness is a “gift.” It’s not. I’d gladly be rid of it. Outside of sometimes making me extra productive, it does nothing for me that I’d want to keep. But the ability to empathize with my child, to so bone deep understand how he feels, and to know how to help him is a gift. When he panics, I don’t say “don’t worry about it” or “it will be fine” or “just stop thinking about it.” I say, “Let’s talk about it if you want to. Yeah, that really sucks. It’s so hard to not feel like that. What can I do to help? What will make this feel less scary?” I know when he needs to get back in with his therapist. I know when medication seems like it needs to be changed. And the other night, when he had a crying meltdown over turning 10 (“I don’t want to get older. You’re getting older and will die someday. I don’t want to be without you. I want to stay little. Everyone in our family dies young. What if the movers lose all of our things? What if no one at my new school likes me?”) and it spiraled into an existential crisis over EVERYTHING, I got it. One worry reveals 90 worries. One thought makes 90 thoughts start shouting at us. And rational discussion or understanding does not do anything to dissipate what’s happening in his brain. But we talked. And found distractions. And called it what it was–a panic attack–and noted how much anxiety sucks.

 

He has to grow up with the burden of mental illness. I can’t change that. But I can damn well make sure he grows up knowing that he is supported, making sure that he gets the treatment he needs, and helping him understand there is no such thing as normal and that there is NO shame in how his brain is built.