Monday, October 25, 2021

5 Minutes of Advocacy (Day 299)

Tomorrow is parent-teacher conferences for my high-schooler.  I have 5 minutes with each teacher. 

And I am riddled with anxiety and filled with plans to somehow avoid attending; even though I know I would never miss these conferences. 

My emotional turmoil is not because I think my daughter is anything but smart and lovely and brilliant. It is because I know there will be things that pop up surrounding her past diagnosis, more recent shunt failure and current performance in school. I know the teachers will be whomever they are already--a mix of lovely, tired, frustrated, kind, difficult and complicated human beings. I don't know how much the teachers really know about my daughter--this is the first year in a while that I haven't written to every teacher and explained my daughter's complicated and extraordinary history. 

She requested to do that; and she should. She is 15 years old now and this journey through childhood cancer and schooling is her journey. It isn't mine--not really. Even though somedays it feels like mine; that's just me mentally hijacking the lift of it all. I have a role in her education; but in the end, it is her lift. 

I am not the one who has to find her way through high school. I've already done that. It's her turn. 

And I am so emotionally and mentally exhausted from the constant work managing her education and her IEP; that a huge part of me is ready to hand her the document and say "good luck!" But, of course, I would never leave my child drowning in that sea of papers and explanation and communication and rules and rule breaking and confusion. I've been drowning in it since the beginning. And if my daughter reads this--I want her to know how worth it she is and how I would not change anything because to do so would be the change everything. 

I'll drown over and over and over again if it means my daughter is given an equitable chance at an education. 

But, it should not have to be this way. 

The educational system is broken in so many ways. Children who need accommodations, like my daughter, often receive them, but it is a constant cycle of communication and meetings and procedure. The annual move up to a new grade presents an endless annual cycle of problems--new teachers don't have the time to get up to speed on the new students and their educational plans. Sometimes the accommodations are written so specifically that they reduce children to a "how-to" list that takes away the ability for teachers to meet them in flexible. human ways. But, then if that specific list does not exist, children can be lost and left to struggle needlessly, when simple,  but critical interventions like extended test time and printed materials could make all the difference. 

In the end, the law requires school compliance; but the expectation is always on the parents and student to advocate and make sure the IEP or 504 is followed. No matter what the legal requirements of special education--what happens is reality is endless advocation, communication and follow up. 

For our daughter, things have always worked out--because we worked. It is this work that is so exhausting and so demoralizing. Now, as our girl gets older and wants to take the lead, the weight falls on her in a way that is unmanageable and inequitable, as compared to her peers. She needs something printed--she has to ask for it. She wants an accommodation--she has to specify it. She requires extra time on a project--she carries the burden of asking and advocating. When she does not ask, she is asked why she did not or we are told, "you just have to ask!"

All we do is ask. The burden is endless. And what teenager has the skills to endless advocate and hold adults accountable for their non-compliance or their innocent ignorance? The mental energy this all requires takes away from the mental energy needed to be succeeded at academics--part of an endless cycle of fighting for equitable access and then getting it, but being so exhausted from the fight, that she is unable to take everything due to her. 

I don't know what the solution is. But I do know this is a heavy burden for parents, like me and more so for children like my daughter. I don't think one group is to blame; but the holes and breakdown in the system are everywhere.

And 5 minutes is not enough time to explain this all to a teacher--I think is at the crux of my anxiety. I have 5 minutes to explain, advocate, communicate and establish a relationship with a teacher; who will not be her teacher in another few months. Just 5 minutes to change the world for my child. 

Sunday, October 24, 2021

The One From Vegas (Day 298)

Today we went to Vegas, for the day! 

It was marvelous, as Vegas always is in small, frequent doses. 

As I write this, we are in the world’s longest TSA line, because apparently dogs are doing the screening. We had to walk in pairs as if in a wedding processional and a dog sniffed us. 

I am happy to say that the sniffing dogs allowed us to pass and now we begin our trek home. 

On our way to Vegas, we had a ground delay for “presidential air traffic” and then as we waited, I got the CNN alert that Chuck Schumer was flying to Wilmington to chat with Biden about something or other. We eventually took off and made it in time for the Eagles-Raiders game. Our ride (two Midwestern men Mike knows) handed us a Truly and a White Claw upon entering the vehicle. (These same Midwesterns also taught me how to take a selfie using the volume button! Shut up, I know this is knowledge I should have had!) 

Anyone who knows me, knows that I am not a super big football fan; but I am a fan of all ticketed events that require a costume! So I popped on my Eagles costume (which led to this strange Raiders costumes man in Philly repeatedly saying “your going down.”)

In the end the Eagles did lose (so maybe this strange man was indeed blessed with the gift of fortune telling). To keep with the theme “going down,” two other things happened:

a woman fell behind me and gripped onto my arm and scratched it. It was very dramatic and possibly my fault, I do have pointy elbows and have been know to knock people with them. Also I totally shook her off me. Hopefully she’s okay? 

And we went on the roller coaster at New York New York and got a souvenir picture—because Vegas isn’t Vegas without a souvenir picture. Safety note: I feel like I almost fell out several times.

I also won $8.36 on penny slots. So I am now flush. 

Next up is the long red eye home. Monday will be exhausting; but the memories of this fun, ridiculous day are so worth it.  See ya next time Vegas! 

Saturday, October 23, 2021

22 hours (Day 297)

Tomorrow, I am leaving the state on an airplane and planning on being gone for 22 hours. 

Mike is coming, too. This means our children will be with my mother (and a variety of coaches, religious volunteers and paid employees and theater teachers) for 22 hours. 

This requires 110 hours of preparation and several spreadsheets and lots of time in prayer. 

(Is there a Saint for parents who are going away for less than a day? If so, intercede SAINT WHOMEVER YOU ARE! INTERCEDE!)

Do you know the things that can happen in 22 hours when we are not present? Well, let me tell you:

1. Someone will arrive someplace 45 minutes early and because no one else is there yet (because no one has to be there for 45 minutes), the adult in charge (i.e. my mother) will turn back, assuming the event was mysteriously cancelled, but it was not, obviously. 

The adult in charge will not make use of their cell phone to check if event was mysteriously cancelled. This early arrival and abrupt departure will set in motion a series of events that will include you considering to make a missing persons report, a neighbor knocking on our door to do a welfare check and you being labeled "the crazy overreactor, 'what's the big?' lady," as you scream and panic from your hotel room when you should be poolside! 

2. Someone will have a small medical issue. 

There are several small medical issues that could pop up in 22 hours. Buckle fractures (via diving over the couch onto a solid wood table while your caregiver cheers you on and touts your bravery), cracked fillings (via Gobbstoppers or stale old lady candy), mysterious scratches (via sibling in-fighting that is not stopped) and exhaustion (via staying up all night to "just watch one more show.")

3. There will be mysterious messes. 

You will walk in and wonder, "what's that smell?" and then wonder, "why is there is a trail of sugar leading to the toilet?" and then you'll ponder, "Did I draw with my eyeshadow all over the white couch?" and of course, you will ask yourself, "Well, how did I get here?" And then, you will turn around screaming, "THIS IS NOT MY BEAUTIFUL HOUSE."

But it is. That is your toilet at the end of the sugar trail. All yours. 

4. No one will listen. And everyone will call you and force you to listen to the complaining about no listening. 

Your phone will ring off the hook. (I know, phones don't have hooks anymore, but you get it!). The caregiver will call. The middle child will call. The big child will call. The little one will call. The dog will call. The cat won't call because she went into hiding the moment you left. Hopefully, the police won't call. But ANYTHING IS POSSIBLE, because no one listens, ever. 

5. You will miss them so much. 

At some point, you will realize that you cannot ever leave the house or the state or be on an airplane without your large family in tow, because they cannot be left alone and need you desperately, at all times, even when they pretend (aka yell things like, "GET AWAY" or "I HATE YOU SO MUCH" or "YOU ARE MEAN MOMMY.") otherwise. In 22 hours, you will miss them more than you've ever missed anyone, even when you are slamming your cell phone down like it is 1990 in your parent's kitchen on the corded phone when they make you listen about the complaining about non-listening. 

Note: all of this is just as likely to happen if you leave then for 22 minutes. 

Friday, October 22, 2021

Returning the phone call (Day 296)

Today, I had a missed call from a number that looked like it belonged to one of the three schools my children attend. 

It has been a record 2 days without a call or an email. I had started to feel like a normal parent--the ones who drop their children at school, go to work and then see their children at the end of the day and only know what goes on at school based on their child's account. 

And then I had the missed call, but no voicemail and a friend told me my voicemail was full, so I was filled with even more paranoia and was ready to begin calling each of the schools to see what terrible, weird, confusing thing happened today. 

But, then I decided I'd just call the number back on the off-chance it was like the direct line to the Superintendent (because at some point these constant school situations will run their way up to the top of the heap. My children are not poorly behaved or hoodlums or bad kids; they are just half Carrington and half Adkins and this combination makes for unique, authority challenging, out of the ordinary situations.). 

I had to take 17 deep breaths, pinch my eyes closed and stifle the nervous vomit bubbling up in my stomach and just hit the "call" button.

It rang once and I hung up. And then, I closed my eyes again, let out a huge breath and hit the call button, yet again. And it rang three times. 

And, a nice lady at Walgreens answered--a real person. Apparently, my mother's "IBS with constipation" medicine prescription was ready and she had been asking about it and left my phone number because as she told the nice lady at Walgreens, "my daughter has a way of getting things done."

Which, bizarrely, is literally the exact thing I needed to hear after a week of several defeats and false starts and forgetting who I was; and when I actually had several things to get done. 

So the lesson: always return the mystery phone call. Maybe it will be exactly what you want to hear (or maybe you'll finally extend your car warranty before it is too late!). 

Thursday, October 21, 2021

How many times can I reference bat feces? (Day 295)

The other night, Mike, Nick and I were at King's Road in Haddonfield having beers (soda for Nick!) and pizza. At an adjacent table, I kept hearing a man declare, "IT WAS BAT SHIT" or "SHE IS BAT SHIT CRAZY" and then "I JUST WENT BAT SHIT CRAZY." and finally, "I TOLD YOU GUYS THREE TIMES THE WORLD IS BAT SHIT CRAZY."

I mean, he isn't wrong, right? He might be the wisest man in the Haddon.

In these pandemic times, we are all mostly pretending life is normal. Our children head off to school (and I don't even think it is strange when I shout 'Did you remember your mask?" as my children run from me to the bus stop.). I work, albeit, at home, alone on video calls. But by now, I am totally used to it and take pride in knowing the names of colleagues' cats and dogs. I recognize their roommate's and partner's background voices. 

My kids play sports and dance. I can fill out a COVID screener in 3 seconds without accidentally saying "yes" when I should say "no." This afternoon I was in a meeting and I received a call and assumed there was a COVID outbreak and even though the message did not mention COVID, I still assumed it was COVID because why else does anyone call me?  

I have a new friend at the Department of Health who I email with daily and sometimes chat to. Lily's second dose vaccine records aren't showing up in the system. It seems completely normal to discuss this and have a DOH pal. 

Things are constantly cancelled or changed last minute; I don't really have any expectations anymore. We've just pivoted and become experts at making our own fun--camping trip cancelled? No worries, we will just do it at our house. 

Lily and I are going to Paris in April; and I bought the insurance to cover our extended stay in the event we have to quarantine because we are COVID positive. The travel company walked us through the possible scenarios tonight and it was a bizarre conversation filled with plans of leaving behind the positives and worst case situations. I kept thinking about the island off the coast of Spain where they dumped all the people with tuberculous and I wondered, is there a 2021 French equivalent? Will this be my fate?

And really, it might be and that seems perfectly possible and normal. Because everything and everyone is, well, bat shit crazy. 

Wednesday, October 20, 2021

Pupils (Day 294)

Sometimes when I am having inexplicably dark days, like today, I like to check my pupils. It's a bit compulsive. I stand in the front of the mirror--one eye at a time, open and close. I watch my pupil magically expand and then contract; confirming that despite everything out of control, I can still control the light and the dark my eyes allow in. 

When my brother was in a coma, the nurses would come in and check his pupils. 

I'd hoover on the other side of the bed, leaning in so close that I would have to steady myself to prevent from falling into the hospital bed, watching and waiting for the results. The nurse would use one hand to pry open his eye; in the other hand, she'd hold the flashlight. The flashlight would flick into his open eye, then a pause, then away again, pause. Then, she would switch eyes and repeat: light in the eye and then light out of the eye. Flick. Flick. Flick. Flick. 

Then, she'd write something down. I never asked what. I did not want to know; I wanted to just live in the suspended land of not knowing. It was easier to not acknowledge the bubble of foolish hope that bounced inside me and better to avoid the gnawing, crushing hopelessness that banged and raged on my insides. 

Either way, I made myself be confident my brother's eyes reacted to the light. After all, his body was right there in that bed. David was there. Of course, he had control of his pupils. 

In the beginning, they checked every 15 minutes, then every 30 minutes, then hourly, then every 2 hours and then suddenly, it seemed they just checked on shift changes. 

His pupils never reacted. 

He wasn't right there. His pupils were no longer under his control. That automation was over. David was elsewhere--gone and not able to make his pupils expand and contract in the way that indicates the light is on and someone is home. 

It was dark. No one was home. Pupils don't lie. Pupils are the truth tellers of the body and they deal in very simple black and whites. They see bright lights--they shrink away. Dark shadows arrive and they widen, desperate to let in any bits of light they can grab. Flick. Flick. Flick. Flick. 

Tuesday, October 19, 2021

On pleasing people (Day 293)

I have worked in public relations/marketing/communications my entire career. My profession is all about pleasing people--pleasing people enough to get them to buy your product; pleasing them in the right ways to get them to make a donation; pleasing people to get them to read your article; pleasing people so they are satisfied with your PR response; pleasing people so they open the email and click on the content; pleasing people so they share your social post; pleasing people so they renew your contracts, give you more hours and pay you. 

I am a professional people pleaser--an expert at figuring out the exact way to please certain audiences. I don't always get it right; but I don't typically get it wrong either. 

It's funny I ended up in this people pleasing profession. My first professional path was architecture, which I chose because my math teacher told me I was "too smart" to be an interior designer (this was pre-HGTV!) and my father told me that I was "naturally inclined at science but creative." My grandparents saw me as an architect. One cousin was so excited to someday be in a building I designed. 

So, I majored in architecture. It pleased people. 

But, I hated it. I liked drawing; but not under pressure. I loved buildings and spaces, but not enough to ideate and innovate construction. I loved science ,but there wasn't enough in architecture. I craved creativity, but with words not with buildings. 

I wanted to switch my major to English; but my Dad, already stressed by one year of college paid for and mostly wasted with architecture studio credits, said no. He said, I'd major in journalism (there were still newspaper jobs then) and public relations (always in demand!) because then my words could get me a job. 

So, I agreed. I took tons of English classes. And between the support of my professors (who were always helping me find internships) and the support of my Dad (who taught me the art of the hustle and pitch and also took a liking to Dr. Marra, my creative writing professor), I had endless writing opportunities. 

After I wrote that sentence, I realized that I did not give myself any credit in matter. I wrote that sentence to please one dead man, another retired man and some mass of nameless academics. None of them ever asked for this sort of praise, I just offered it in an effort to appear to be pleasing them. 

Why do I even care what they think? It is ridiculous. 

I think it took me 20 years to get to this place of feeling really confident and able to write a book because I needed to discover the book that I was writing for myself.  When you are a writer, people tell you all sorts of things, all the time, like: "You should write a book!" or "Oh, you haven't written a book? What are you waiting for?" or "You are writing a book? That's funny." These statements truly paralyze me and trigger imposter syndrome. On one hand, I feel like I should write a book and begin scrambling for an idea. On the other hand and despite the fact that I easily write 25,000 words a week, I feel like a lesser writer because I am not author. 

It's all just a bunch of people pleasing circling around in my head. It's a little bit of self abuse, I think. Pleasing the people pleasing monster in my head--and sometimes, even having anxiety that I haven't pleased it enough or worrying about what will happen if my efforts to please failed. 

But, I am trying. I am trying so hard to cut this nonsense out for myself. I think writing here everyday has proven to be a bold, defiant first step in raging against the people pleasing monster in my head.  I committed myself to always being honest here and not writing to please anyone (and even to avoid proofreading and corrections). I think this daily act of writing here--simply for myself--has gotten me to the place where I know what book I will write and it is not a book to please anyone. 

Although, I sincerely hope it does please an editor and an agent and a publisher. But, I cannot worry about that right now, because to worry about the end is to compromise the work itself. 

I am going to keep trying at this and keep trying to stop pleasing everyone. 

PS I have to give credit, though, where credit is due and mention that this blog post was inspired by my favorite author and human and woman to stalk on social media, Judith Lythcott-Haims, who wrote: "Why should you stop pleasing others? Because they have no idea who you are, they do NOT know you better than you know yourself, and their approval is NOT required." These are the words I will send my children out into the world with every single day. Thank you Judith.