Month: February 2015

Grown Up Movies for Kids: Wonder Woman

Posted on by Beth Caldwell

OK, so, this isn’t technically a movie…but the first episode is pretty long, and when you’re talking about an icon of second wave feminism, exceptions can be made.

Over the holidays, my college BFF came to visit, and she brought presents for the kids. For The Boy, Legos of course–she has three boys, she knows the way into a young man’s heart. For The Girl, she wasn’t sure what to get. Because as much as we don’t want to admit it, we live in a world today where toys are completely gendered. It’s fucked up, but it’s true. So, I suggested dress up clothes that aren’t a princess (we have a crapload of princess stuff already). She went on Amazon and she found a Wonder Woman costume.

When The Girl saw it, she was completely stoked and immediately wanted to put it on. I mean, who wouldn’t? She’s got those rad silver bracelets and a gold crown thing and those crazy boots, and a skirt filled with stars. That costume is fucking rad. But fashion isn’t really what The Girl’s excitement was about. It was about her getting to be a superhero.

Some girls who are into superhero stuff are cool with pretending to be a male hero, like Iron Man or whatever. But my girl likes being female characters. She strongly identifies as female. And the fucked up thing about all this princess crap is that the only female characters she’d seen in children’s television who made for good pretend play were princesses, and Doc McStuffins. (She still isn’t really into SuperWhy, and she’s too young for Harry Potter. Hermione will certainly be a hero to her, with her love of books.) Doc is cool and all, but she isn’t magical the way a superhero is.

So when The Girl saw that one can be a feminine super hero, she was like “WHERE HAVE YOU BEEN ALL MY LIFE.” I started singing her the theme song, and she was hooked. We found the 1970’s TV series with Lynda Carter on Amazon Prime, and bam, my little girl had found a hero she could look up to.

We talk a lot about girls being able to do anything boys can. But if we don’t show them female role models doing anything, will they really believe us? I would have never known that my girl wanted to play super hero, if we hadn’t given her a feminine super hero as a role model. And that’s why it’s so vital for us to teach our girls about women who do rad stuff. Like Sally Ride, and Madeline Albright, and Sue Bird.

The great thing about 1970’s television is there’s no nudity, there’s no swearing, and the violence is pretty tame, even in a superhero show. So it’s kid-safe, but still exciting. And then there’s all the female empowerment in the show. There are female bad guys as well as a female superhero, because women are individuals capable of both good and evil, just like men. Wonder Woman has to politely tell the Nazis that women can do anything men can, before she punches them out, crashes their plane into their own submarine, and rescues her hapless love interest.

I mean, how can you not love a show whose main character says things like “Sisterhood is stronger than anything” and “You obviously have little regard for womanhood. You must learn respect”? That’s some good shit right there.

Lest you believe that Wonder Woman is only for girls, I would direct you to The Boy, who will tell you that he likes the show too. He especially likes when someone takes out a Nazi.

Let me know what your kids think of Wonder Woman in the comments!

How The Hubs Feels

Posted on by Beth Caldwell

The Hubs wrote this last night. I haven’t edited at all–this is purely his heart. I’d love it if you guys shared it around the interwebs.

_______________________________________

Saturday, February 21, 2015

Susan G. Komen
5005 LBJ Freeway
Suite 250
Dallas, TX 75244

To whom it may concern,

I am writing to you asking that you change your focus of your organization and reallocate a large portion of those funds from that refocus to an under resourced area of research. The current Komen mission is focused on education and funding research. I would argue that the first part of the mission has been accomplished and that you need to focus more on the funding research. Everyone is aware of breast cancer. From the NFL wearing pink, the various products that you can buy that have pink ribbons on them to the flowing masses of people that participate in the Walk for the Cure. People are aware of it. They are so aware of it that it threatens to lose meaning or importance of it. My observations of it has that it has become a marketing and revenue generation business, but it feels like it is a business that has lost track of its mission. The statistics I’ve been able to find show that somewhere between 15%-20% of the funds generated by the Susan G. Komen for the Cure charity are spent on research. Using your organizations own statements in the past of “83 cents of every dollar…” that means that about 63% of your funding dollars are spend supporting the other missions then research. Your organization has won the education war. In my 38 years on this earth, I’ve seen a steady increase in awareness as well as society being engaged on the issue of breast cancer. People can talk about it. People are aware of it. They know it is a problem and they know people impacted by it. The mission has been accomplished. It is time to flip the numbers around. According to your own numbers, you spent 38% of the 2013 funds on education, and only 18% on research.
I implore you to switch your mission priorities around. The primary mission should be funding research now and not education. Research funding has been being cut left and right at all levels in science, and while the amount of money that Komen is providing in grants has been up, the percentages are not, or at least not that I have been able to find reference material on. You should instead refocus much of those education dollars on research for stage IV and prevention of cancer progression from the various stages. That we need more then treatments and that while are quick to point out 5 year survival rate for early-stage breast cancer are excellent, but that is not enough. What of those with stage three and stage four? What of the why’s and how’s of the sometimes rapid progression from the various stages? That is the hard work. That is where lives are lost and families destroyed. That is where the need is greatest, where research dollars could have significant impact and spur research in those areas of the greatest impact. Think of what things would be like if Komen came out and said “we are going to spend 45% of the money brought in on research…” You would be effectively tripling the amount Komen spends on research. Not only that, because Komen is one of many and it is in a leadership position, it would send a clear signal of what the priority should be.
My wife has stage four breast cancer. She found a lump in March of 2014, and within a week our families life was upended as the diagnosis went from stage two, to stage three and after MRI’s, brain scans and PET imaging settled on stage four. Since then she has had two different rounds of chemo, a single mastectomy and is getting additional hormone and bone therapy. She recently had another PET scan that showed what is likely cancer in the marrow of her bone of her arm and on T11/12 of her vertebrae where there was none before. She is 38, a wife and mother of a seven year old boy and a three year old girl. She is quite possibly the strongest person I’ve known in my life and I have been there through all of this with her. We both know the statistics and the numbers about the cancer details and the impact that her young age has on the 5 year survivorship rates. The hardest thing on her hasn’t been surgery, the treatments, giving up working to focus on treatment or the doctor appointments. It hasn’t been losing her hair, the exhaustion or the side effects of the treatments. It has been the likelihood that she might never get to see our son graduate elementary school, or high school or college. What makes the tears flow is that she will likely never see our daughter start school. That statistically, she will miss all those moments of their lives and never know her children as adults. That her and I will not grow old together. And so you see, this letter is not the ramblings of someone who does not understand the situation, but one of someone who is all too aware of the realities of what stage four cancer means. That there is no cure and that the only way out of stage four cancer is feet first. That at some day, and I pray this day never comes, that my lovely wife will join the statistics for a final time of being one of the 40,000 women in the US who die from breast cancer every year.
So again, I implore you. Change your mission. Change your focus. Change the math and the equation. Spend more, not just a little bit more, but a lot more on research. Do the hard work and lead. Empower science and medicine to find a way. Celebrate the win of education, but fight the fight that is killing people every day. Fight the fight to give people more time and not just early stage, but late stage as well. So that even if my wife dies from breast cancer that maybe out there in the world there will be someone who benefited from the change of focus. That even if she dies, that maybe someone else who got a new experimental treatment derived from research will live, and that her family/friends/husband/children will be able to hold her close and experience all the things in life that they are supposed to together.

Sincerely,

James Hawkins Caldwell III

Cocktails with the Cult: The Hormonal Sunset

Posted on by Beth Caldwell

The title of this post is misleading, because usually my Cocktails with the Cult posts are about actual drinks that you can have. But this edition is about the drug cocktail I’m on, and an explanation of why.

So, two weeks ago, I finally had that PET scan that my former insurance company refused to pay for last year. At this point, I’d like to give a shout-out to the federal employee Blue Cross/Blue Shield plan for being the expensive but very comprehensive plan that I need. I read their policy like 14 times to make sure that it actual said that diagnostic imaging didn’t require preauthorization, and that PET scans were a covered procedure, because a lot of insurance plans are refusing to cover PET scans these days, or only approving them after other scans are inconclusive. I will save my rant about that for another day. Suffice it to say, if you’re a federal employee and looking for the Cadillac of insurance plans, rather than a low-cost-I-don’t-expect-to-get-seriously-ill plan, go with Blue Cross/Blue Shield over GEHA.

Anyway, the PET gave us mixed news. The good news was that the hip and sternum tumors didn’t light up, which means at this point the PET found no cancer there anymore. Thank you, chemo and radiation from last spring! In addition, we saw nothing in the chest area where my breast used to be.

The bad news is, I have new tumors, one each on two of my vertebrae. And the bone marrow in my right humerus lit up as well. In addition, the lymph gland near my heart that lit up on the first PET lit up again, like it did on the first PET, and it’s gotten a bit bigger. This means my disease has progressed.

This is by no means cause for panic (I keep thinking of that Monty Python sketch–“Bring out your dead!” “I’m not dead!”), but it’s definitely not good news. My oncologist (who my readers will, by now, realize that I trust 100%) and I agree that sitting on our laurels would be a really dumb idea. He’s not ready to jump into chemo right away, and I saucily told him “Yeah, I’ve got a book launch to do, chemo now would be inconvenient.” Instead, we’re adding a new drug to my cocktail, which I am naming The Hormonal Sunset. Because the goal is to sunset all that pesky estrogen that my cancer likes to eat so much.

So, here’s the recipe for my cocktail that you can’t have. I bring you The Hormonal Sunset:
1 part anastrozole, taken in pill form every day
1 part leuprolide, taken as a shot every 3 months
1 part fulvestrant (the new addition), taken as a shot every month, but with a loading dose at the beginning requiring a shot every 2 weeks for the first month
1 part denosumab, taken as a shot every month to help strengthen the bones my cancer is trying to eat
1 part gabapentin, taken as a pill every night for hot flashes
2 parts calcium with vitamin D, one pill taken in the AM and one in the PM, to keep my bones strong in the face of menopause

We might be adding palbociclib, which is a drug that literally JUST got approved by the FDA this month, to my cocktail if Blue Cross/Blue Shield agrees to pay for it (see how I said such nice things about them earlier? I’m trying to be their new favorite patient so they’ll keep paying for everything I need) and/or if I end up in a trial for it. (I’ll be writing a post on clinical trials in the coming weeks–stay tuned.)

You’re probably wondering how I’m doing with this news. Am I freaking the fuck out? Not really. Because the other thing my oncologist and I talked about is where we’re going with this whole treatment thing. I asked him if getting to no evidence of disease (NED for short) is the goal, and if so, if that’s a realistic goal. And he was like “Yes and yes.” He feels like we can get there with the addition of fulvestrant, but even if that turns out not to work, we’ve still got chemo in our back pocket. It worked so well last spring–remember how the big ass tumor in my breast was just scattered cells in scar tissue when I had my mastectomy?–that we’re hopeful my cancer will respond as well if we need to try it again. That NED is on the table as a realistic possibility, and not just some pipe dream, means I’m not going anywhere anytime soon. And that’s very good news indeed.

Which again brings me back to my shameless sucking up to Blue Cross/Blue Shield, because I’m going to need another PET in 3 months to see how the cancer is responding to The Hormonal Sunset. That would put us in May. I promise to keep you all posted about how that goes.

I’d say cheers like I usually do in my Cocktail posts, but I really don’t want any of you to have to take this cocktail, ever. Seriously.

Where my boob used to be

Posted on by Beth Caldwell

There’s gonna be some medical stuff in this post. If you’re squeamish, you might want to move on.

Back in the spring when I decided to have my boob cut off, I figured 2015 would be the year I’d have it rebuilt. Because I’ve had radiation, the tissue on my chest wall is too tight to be able to use an implant. So, rebuilding it means getting a tummy tuck, and using that tissue to build the new boob. Or, if for some reason they couldn’t use by tummy, then they’d take the tissue from my butt instead.

The tummy-to-boob transfer procedure is called a DIEP flap, and it usually requires several hours of surgery and then 3-4 days in the hospital, followed by 4-6 weeks of recovery at home. It’s a similar amount of hospital and recovery time for the butt version of the procedure. And it’s a separate outpatient procedure to build a nipple for the rebuilt boob.

All this is to say, it’s be kind of a major procedure, having reconstruction. And unlike the mastectomy, it’s not, like, cutting cancer out or whatever, so it’s not something that’s going to potentially help extend my life like the mastectomy did.

I’m torn about whether I should put myself through all that. I feel like this: if I’m one of the lucky ones, the 1 in 4 who are still alive 5 years after diagnosis, then yeah, I’d like to not have to look at the place where my boob used to be for all that time, and it seems worth it to put myself through more surgery, even if it’s not going to extend my life. Looking at the scar in the mirror every time I get dressed is depressing, and having a breast again could mean a lot to my psyche.

On the other hand, if I only live the average life span from diagnosis, which is 2-3 years, that would mean I’ve only got a year or two to go. And I don’t want to spend an entire month of it recovering from surgery. I’d rather feel good for as much of that time as possible.

I’m also not excited by the idea of surgery in general, like, being in pain and having drain tubes hanging off my body and even more fatigue…ugh. Just ugh. In addition, reconstruction doesn’t always turn out perfect, and even if I do end up with nicely shaped boobs after all this is done, I’m still going to have scars to look at in the mirror.

What blows the most about all this is the whole “if” part. If I live past the average life span. If I don’t. I hope I have a long time left with my family, but I may not, and time feels a lot more precious than it used to. But it also feels like hope is something I should try to embrace, and reconstruction would certainly be embracing hope.

If you’re a metster and you’ve had reconstruction, I’d love to hear your thoughts on this. I feel like we face a more complicated choice than non-metsters–not to diminish the fear and the struggle that someone with “just” early stage breast cancer faces, but it’s different when you know cancer is going to kill you someday.

Welcome to Hell: ADHD and Valentine’s Day

Posted on by Beth Caldwell

I fucking hate Valentine’s Day. And not just because it’s the absolute worst night to try to go out for a romantic dinner, because everyone’s favorite romantic restaurants are overcrowded, noisy and completely unromantic. Or because it’s yet another way for corporate America to convince my poor husband that he’s gotta buy me crap I don’t need. No, what really makes Valentine’s Day the 5th layer of hell is that The Boy has ADHD.

They key area where The Boy continues to struggle academically is with writing. He’s excellent at story-telling and super creative, but actually putting pen to paper and getting those ideas out is REALLY FUCKING HARD for him. Like, in a 20 minute writing session in class, he’s lucky to get 2 sentences written, with close to one-to-one support helping him focus and stay on task. And that’s an improvement–it was much worse last year before he started on the ADHD meds.

So now think this through: there are 24 kids in his class, him and 23 others. That means on Valentine’s Day, he’s got to write up 26 valentines. To Billy, From The Boy. To Megan, From The Boy. (These are not real names, I’m not an asshole.) Just those two cards are gonna take him for-freaking-ever. And we’ve still got 21 more to go, all the while with me doing whatever I can to keep him on task.

This year, the assignment for his class was so beautiful, and so in line with the values our school is trying to teach our kids: instead of just commercial cartoony valentines, they sent home note cards, and asked our kids to write compliments about the other kids, and then color the cards, to go in a nice booklet that each kid will get. Isn’t that beautiful? This is why I love our school staff, the compassion they demonstrate and that they work to instill in our kids is amazing. I’m picturing the wonderful book my kid will get, and how much it will boost his self esteem to hear his peers saying nice things about him. I love this idea and the kindness behind it.

But let’s pause for a moment, and think about what this entails for The Boy. He has to think of a compliment for each kid (which is by far the easiest part–he loves the kids in his class), write the kid’s name on the card (“To Suzy, From The Boy”) AND then write a whole sentence compliment. And then color a picture on each one. Times 23.

It took him an hour to write 3 cards and color one. An hour. And that was with us sitting with him the whole time and doing everything we could think of to keep him on task.

At this point, I decided we needed to try a different tack. I stopped to think about what the goal of this assignment was. Was it to get him to write everything because he needs to practice his writing, or was it about telling his classmates what he likes about them? Or was it both? I decided that maybe if we broke the two tasks up, we had a better chance of getting through them.

So, I sat down with him and my iPad and the list of kids in his class, and I had him tell me the compliment he wanted to write about each one, and I typed them up for him. That took us about 15 minutes. Then we printed the list out, and we let him look at it so he didn’t have to both think up what to say AND write it out at the same time. He could just copy the words he had already come up with. This definitely sped up the physical writing process–since he didn’t need to think about what he was going to write AND write it at the same time, he got the cards done faster. Not fast by any stretch, but faster. His teacher also offered to let him and his classmates work on the cards in class, if they were going to need extra time to finish them. (Again, LOVE our school staff. They do the things that need to be done to support The Boy and other kids whose brains work differently.)

I know that typing up his ideas first feels a bit like cheating on getting him to figure out how to spell things. But fuck it, that’s the only way this project was getting done in the roughly 10 days we had to finish it. I’m not kidding. Maybe if we’d gotten the assignment sometime before Christmas, we could have made this happen the way other kids can do it. But when writing is a struggle for your kid, you have to make concessions on this stuff. It’s just not right to ask a 7 year old to put in that many hours of work. He needs time to just be a kid and have fun, like his non-disabled peers do. In fact, maybe even more so, if you read the studies on physical activity and ADHD.

The miracle is, he DID finish all the cards on time. I’m really proud of how hard he worked. Maybe some other families might look at his atrocious handwriting and just think he wasn’t trying hard, but if they could see just how much effort he put into this project, they’ll realize that those cards show just how much love and respect he has for his classmates.

So, if this year your kid gets some valentines that look like crap, or were clearly not hand-written by a kid in their class, please don’t poo-poo them. They probably reflect more thought and effort than you realize.

Shameless Bragging

Posted on by Beth Caldwell

Something awesome happened last week: I found out that an essay I wrote is going to be in a book. An honest to god real paper (or e-reader, if that’s your thing) book. Like, a book you can buy and I can sign and my kids can physically hold in their hands someday. It’s called I STILL Just Want To Pee Alone, and it’ll be available this spring. If you read the first I Just Want To Pee Alone, you know it was good stuff–funny and poignant and just overall rad. And this new one is going to be fucking amazing too. When it becomes available, you can bet I’ll be sharing info on how and where to get your hands on a copy, and where you can meet me and some of the other authors so we can sign your copy for you.

I am so fucking proud of this. And I plan to shout it to the rooftops. You know why? Because it’s something to be proud of.

I feel like a lot of us, women in particular, think it’s not OK to brag about their accomplishments. We’re supposed to be like “I’m so humble, I don’t mean to toot my own horn” and shit. Men too somewhat, but seriously women. I can’t tell you how many women I know who have some big success but don’t feel like they’re able to say how proud they are of it.

And I’m going to say something that is going to probably lose me some friends, but I don’t care: I think part of why this happens is other women’s reaction. All too often, we don’t celebrate each other’s victories. And I think the reason we do this is because women in particular feel like we’re competing with each other for resources. We make less money than men. Women writers are often pigeon-holed as “chick lit” when the same book with a male author would be seen as “real” literature. When the pie is so small, it’s easy to feel jealous when someone else gets a slice, and easy to say “She doesn’t deserve that.” This is how we, as women, fall into the trap that patriarchy has set for us.

How do we get out of that trap? Well, step 1 is realizing that celebrating other women’s successes does not diminish our own. When we see our fellow women writers having success, we should cheer for them. We should say “I am so proud of you, my friend.” That is some powerful shit right there. I’ve had a lot of women say that to me since I found out about The Book, and it helps me overcome the pressure from society to pretend like it’s not a big fucking deal to have this kind of success. And I do the same for my friends who have successes. When I read a blog post I love, I share it. When we support each other, we make our community of women writers stronger, not weaker.

The second thing is harder. We have to learn to tune out people who tell us not to celebrate our successes. It helps to have role models who do it. My favorite college professor, Bonnie Morris, always tells me about the cool work she’s doing, like being published over and over, and lecturing at international conferences, and being invited to the White House for bill-signings. She’s proud of her work, as she should be, and every time I hear her talk abut it, I think, “I can be proud of my work too. I don’t need to act like it’s wrong to be proud of my accomplishments.”

So, am I bragging about this? FUCK YEAH I AM. I’m proud of this, and of every other writer whose work will be in the book. We’re badasses, and there’s nothing wrong with saying so.

Feminist Warrior Fridays: Frida Kahlo

Posted on by Beth Caldwell

When I was in New York, I spent some time at the Museum of Modern Art, which is an incredible place. I knew that Starry Night was there, but beyond that I didn’t really know what was in their collection–I just knew it was good and I wanted to go see it. So, I walked into a gallery on the 5th floor and I stopped dead in my tracks in front of this painting.

I have loved Friday Kahlo’s art for a long time. She’s like the Betty Friedan of the art world. What do I mean by that? Well, what was radical about Betty was that she spoke the truth of her experience, instead of putting on the happy face that women often feel compelled to show. It’s a radical thing, to speak your truth. And I can’t think of an artist who spoke her truth more than Frida. Which makes her one of us, and worth getting to know.

Frida grew up in Mexico, and when she was a teenager, she was in a horrific accident. She was riding in a bus that slammed into a trolley, and a pole punctured her lower abdomen, and she broke more bones than I can count, including her spine. And she spent the rest of her life enduring surgeries and struggling through pain and surviving with her disability. Surviving, until she couldn’t anymore, and then leaving her art behind her.

And oh, her art! It’s so incredibly raw and beautiful and powerful. She didn’t shy away from her pain, the pain that was always with her, both physical and emotional–she painted it instead. The art world tries to call her art surrealist, but she didn’t like that label and neither do I, because, in her words, “I never painted dreams. I painted my own reality.” This is what feminist art does at its best: it expresses the artist’s reality.

Frida painted things that one simply did not discuss in her day, like her miscarriage, and the suicide of a friend. Her works ripped out her soul from her chest, and showed it to us, and said, “Here I am, beautiful, ugly, and perfect.” I can’t even begin to express how much power is in that, in letting the world see you, YOU, not the make-up version of you, not the job-interview-suit version of you, but YOU. Because you’re fucking gorgeous. We all are.

Frida knew that, and she lived it, and that’s what makes her a feminist warrior.

Your IEP Team Doesn’t Hate Your Kid

Posted on by Beth Caldwell

You guys, we’re coming up on annual IEP review time for my kid, and maybe for your kid too. And so, I have something I want to say that might piss some of you off if you have a kid with a disability. But as a blogger I follow said recently, if you don’t like it, then off you fuck.

In all my years working in the field of special education law, I can count on one hand the number of times that I met teachers or other school personnel who hated kids with disabilities. Sure, every profession has its sociopaths, but the pay in eduction is so low, and the amount of power wielded is so small, that sociopathic special education professionals are pretty rare.

And yet, I can’t even begin to count all the parents I spoke to over the years who were convinced that the special education staff at their school hated their child. Because, the parents would ask for something that they believed their child desperately needed, but the staff would refuse to do it, or fail to do it. What other explanation could there be for school staff to refuse help to a struggling child? It must be hate, right?

No. No no no no and no. Just, no.

And this is a huge problem, because if you jump to the conclusion that hate of children with disabilities is the driving motivation behind a teacher’s actions, you’re not going to be able to overcome the real challenges that are preventing that teacher from helping your child. You’re also likely to say something in anger about that imaginary hate that will ruin your relationship with the person who is taking care of your child 6 hours a day, 5 days a week, 9 months a year. Which is a really bad thing. Trust me on this.

So, let’s talk about what might actually be going on, and see if we can get around the problems to a solution, shall we?

1. Schools are fucking broke. This is first on my list because it’s definitely the #1 reason that I came across when dealing with conflicts between parents and schools. Schools are so broke that there have been court decisions in several states, including mine, saying that the state’s underfunding of schools is illegal. There’s a reason why your school’s PTA is always asking for more money: they need it just to keep the school afloat. Lots of schools are cutting staff positions in areas that particularly hurt kids with disabilities, like school counselors, occupational therapists, and nurses. On top of that, the federal funding out there for special education still doesn’t cover the whole cost of educating kids with disabilities. Shit’s fucked up, man, and none of that is because your kid’s teacher is an asshole. It’s because politicians aren’t doing their jobs.

That said, federal law doesn’t allow schools to deny services that kids need to receive a free appropriate public education just because a school is broke. So, if there is a service in your kid’s IEP or 504 plan that they aren’t getting and the school uses “we’re broke” as an excuse, I mean, I’d politely call BS on them. I’d also be first in line to help organize a fundraiser, because again, it’s not the school’s fault that they’re broke.

My son’s school is in a crazy affluent neighborhood that I don’t live in, and our PTA raises a crapload of money compared to most PTAs, some of which goes to things like extra help for kids with disabilities or other learning challenges. If your PTA isn’t spending at least some of its money on services for kids with disabilities, who are some of the most vulnerable kids in school, your PTA needs to be educated about why they should start. Remind them that things that help kids with disabilities also help other kids too–a school counselor is a good investment for all kids. Same with a nurse, an instructional assistant, etc.

2. They don’t know what you know. You know your kid better than anyone, even their teacher. Don’t withhold information about what’s going on in your kid’s life, or what tricks work on their problem behaviors at home, or what areas of struggle you’re seeing when they do homework. How can they help if they don’t know the whole story?

So, tell them you have cancer and your kid is scared about his mom being sick, and it’s making it hard for him to focus. Give them a copy of the allergy testing that shows what foods are dangerous. (I can’t tell you how many times parents refused to do this. It’s the dumbest self-sabotaging behavior I can think of.) Explain how hard it is for your kid to understand the word questions on his math worksheet and that it takes him 20 minutes to do 2 word problems. Bombarding them with dozens of emails isn’t helpful, but sending relevant information (and with a “Thank you for working so hard to help my kid” at the end of it) will help the teacher help your kid.

3. They don’t know the rules. And often, neither do parents. Because they’re complex and they change whenever new laws or regulations come out, which happens every so often. And because it takes time for new people to learn the ropes. I had a colleague who once told me that whenever there was a change in his state’s public employee pension plan that would encourage people to retire, he scheduled extra trainings for school personnel on disability laws. He said that sometimes he’d suddenly see a huge increase in complaints from parents, and he realized it was happening after the old hands left with their years of accumulated knowledge, and new people came in who didn’t know the ropes yet. (That guy is a genius.) In addition, lots of times parents think their child is entitled to something they’re not actually entitled to. Remember, schools are broke, and although they want to help your child, they probably aren’t going to be able to provide extras that aren’t legally required. They just don’t have the resources for that.

So, invite in an expert to speak to your school’s staff about the rules that apply to kids with disabilities, and to parents too. A lot of districts now have a special needs PTA, and that’s a great venue for getting both parents and school personnel on the same page. Often state and federal agencies will send someone to speak to you for free, and so will non-profit groups that support people with disabilities. That used to be my favorite work thing to do when I was still a working lawyer–to do presentations for groups about Section 504, because it helped prevent conflicts.

4. They don’t understand your child’s disability. This is more rare, and tends to be limited to rarer disabilities and/or newer staff, but it does occasionally happen. If your child’s disability is particularly unique, you’re gonna want to pull some medical literature out for the staff and share it with them.

5. You’ve already alienated them because you hadn’t read this post yet. I’m looking at you, parent who tried to get the special ed teacher fired because she wouldn’t provide summer tutoring to your gifted daughter with ADHD who’s already acing all her classes. Teachers are people. They’re patient to a fault, but they’re not going to stick their neck out for some entitled asshole who tried to get them fired when they were just doing their job. Be a grown up and apologize, and bring treats to the next IEP meeting. Because you’re a lady, assface. And because it’s what’s best for your kid.

I guess what I’m saying is, put yourself in their shoes, and see if you can’t figure out a way around the roadblock that is preventing the school personnel from giving your child what they need. You might be surprised at what you can accomplish.