Once upon a time in September 2006, I gave birth to a baby boy. And while I cannot say that I immediately fell in love with the rather huge human who was screaming his head off about being prematurely awakened and suddenly having to breathe and eat on his own, I did feel an overwhelming sense of protectiveness. The falling in love with him over and over every day still happens, but then? No. Instead, in an instant, those Nat Geo shows where the mama lion rips the arms off of a passing monkey who glanced at her cub all made sense. Yes, mama lion, yes. He was looking at your babe; of course, violent, bloody death is the only answer. I got it. Maybe a little too strongly, but I understood. I also understand that zebras are typically not violent animals, and none of that has to do with public schools, but bear with me. I’m going to tell you how the Kraken came to be.
As he grew up, I noticed that my special snowflake wasn’t exactly like the others. I couldn’t put my finger on what it was, but my background was in Educational Psychology. And folks, he was doing some weird stuff. Like the spinning. Dude could spin and spin and spin til I was ready to vomit from watching and then walk away not even dizzy. He couldn’t catch a ball, but he could swim like a dolphin. At 3. He ran like Phoebe on Friends. The vaccuum cleaner and hair dryer sent him into a frenzy. So, I called some people and they took a look and they called some more people and then I was learning about Sensory Processing Disorder and seeking/avoidant and joint hypermobility and low tone and an IQ that was off the charts. I learned about OT and PT and the enormous difference between hypermobile and hyperactive. And so it went through preschool and Pre-K until, after sketchy attendance and rather unstellar performance, he dropped out of Kindergarten and went to the beach and gave his grandmother lice. Truth. His rather brilliant and attentive OT suggested that I make an appointment with the Metabolic Disease Department at CHOP, just to rule things out because he had an odd rash. They were booking almost a year out, but I scheduled it.
All of this brings us to June 2013, which is where the zebras joined our little circus. On the first day of summer, he broke his arm on monkey bars in the park, and we discovered that pain meds don’t work on the spawn. Two days later he had 13 stitches in his cheek playing with the dog and the attending children’s plastic surgeon I made them call in from a golf course on a Sunday thought his skin seemed “different.” Four weeks after that, he sprained an ankle. Ortho warned me that three breaks in one year would mean a full orthopedic workup over three days in the hospital. The stitches dissolved, the cast came off, the ankle healed. We had two blissful weeks of the pool and summer before he broke his other arm playing battle games in the living room in a laundry basket with Beyonce, the giant metal chicken. Two days after that, we were sitting in the Metabolics Lab with two specialists and a geneticist who were explaining Ehlers-Danlos Syndrome (EDS), his 9/9 Beighton Score (5/9 would have been positive) and scheduling immediate appointments with Cardiology, Gastroenterology, and Neurology. I heard things like “incurable”, “spontaneous genetic mutation”, “have to wait and watch”, “lifelong challenges” and “need to see what systems it’s impacting.” My head spun. I prayed that it was not vascular.
They explained that people with Ehlers-Danlos are the ZEBRAS in the medical community, and they gave him a stuffed zebra and a zebra t-shirt.
I notified the school when we got home that he would be entering with special needs but that I wasn’t sure what they would be. And to their credit, they started reading about EDS right away. I ordered Brad Tingle’s book, which at the time was considered the EDS bible and which made my hair stand on end and caused me to need about 175 mg of Xanax over 14 days. Luckily, he was cleared by the specialists, but I was warned that he was going to need to be seen every three years for check-ups. He was going to start school with a full-arm cast. He was not going to be able to participate in a lot of athletics, ever. He might never really handwrite legibly. His fatigue levels would vary, and the school would have to be sensitive. He might have constant joint pain. Those last two weeks of the summer were a frightening blur of appointments and meetings as my only child was about to begin first grade.
And so he did. The folks at school were just as nervous as I was, I think. And so maybe our relationship got off to a bad start. They were calling every day, sometimes two or three times a day. I wasn’t feeling great; I had developed Hashimoto’s right as he was being diagnosed, and I felt terrible. Thyroid problems are no joke. So maybe I was testy. I was all over everything, all of the time. We had 12 meetings about his 504 plan and other issues. His teacher was terrific and patient with both of us. The guidance counselor and principal were supportive. The spawn had some adjustment issues, both to being in a large public school, albeit one of the best in the country, and to doing whole days of school. But we all survived.
Second grade got off to a much worse start, and at some point in the fall, I threatened to have his teacher, who didn’t seem particularly sensitive to the spawn’s special needs, particularly his need to type not handwrite, evaluated by a state psychiatrist, which is a weird and generally unknown rule buried deep in the state education code. I was less worried about the spawn’s physical issues and more about advocating for what he needed. I remember yelling, “You’re grading him on his goddamned handwriting? Do you grade the children with hearing impairments on how well they follow oral directions? Or how well the blind kids read the board? What the actual fuck is wrong with all of you?” at one of them. After that, they announced that they were putting him in another classroom. Also, he’s never gotten another handwriting grade.
As this was going on, they were in the process of doing a battery of tests on the spawn to figure out why he was not doing so well with Singapore Math, aka the Common Core Bane of My Existence. At the last minute, the spawn, being my spawn, did some things that made me immediately revoke permission to evaluate to avoid having his 8-year-old shenanigans written into a report that would follow him into medical school. They did, however, generously offer to meet with me about the results. If I thought it was odd that the Director of Special Education and Assistant Superintendent of the District showed up, I didn’t let on (I hope). And if they thought it was strange that I brought my mommy with me, neither did they. But that meeting ended with my mother asking, quite nicely, about the IQ score that they’d recorded as a 92. I’d noticed it, but I wasn’t feeling like picking a fight. And if had dropped 38 points from when he was 4 and 52 from when he was 6, well…whatever. He didn’t have a math disability; he had an attitude. ‘Nuff said.
The educational psychologist squirmed a bit and then admitted that the spawn had initially refused to participate at all, and then he’d only reluctantly agreed if he could walk around the room like a robot and answer in his robot voice. And the test had stopped when the robot’s batteries died. Then everyone closed their notebooks, packed their briefcases and wished each other a happy holiday season and left. I don’t think I spoke to them much again that year. To this day, we refer to his “Robot IQ.”
It was obvious at the start of third grade that they’d implemented the “Mrs. Smith Management Plan” (MSMP). I knew I was being handled when his teacher called and spoke to me for an hour two days before school started so that everything would be ready for him. They called before he could get home to tell me what had gone on that day. They called and called and sent notes. They headed the spawn off at every path, because the spawn does know how to push his mama’s buttons and set her on the school, and he enjoys doing it. But not so much that year. Third grade was a pleasure. At the end of the year, I wrote the superintendent a letter that no one could believe.
“Dear Dr. Gusick,
I am the parent of a student finishing third grade today at Valley Forge Elementary School, aka the spawn. For reasons that utterly escape me, I suspect that I have been considered “that mom” on many occasions over the past few years; perhaps it’s because I have been very vocal and quick to criticize when there have been issues. Maybe I’ve believed my young chiId and haven’t always considered that his perspectacles might be a little different from others involved in conflicts. It might be because I have had a tough time letting my only child fend for himself. It’s possible that I’ve been too willing to believe the worst and not look for the best when he’s been upset. I’m a single mother raising a bright, creative and mischievous child entirely on her own, so while it’s unlikely, my perspectacles may have needed to be cleaned. I just cannot imagine how I might have contributed to that whole “that mom” thing, but it is a sense I have had.
I also admit that I had the feeling in late August of this year that a plan had been put in place over the summer to “handle” me. I wondered if there had been a “Care and Maintenance of Difficult Parents” inservice training done before school started and if I had somehow ended up on that probably very secret list of “Those Who Must Be Managed.” Once upon a time, I worked in K-12. I know about those lists. I helped create them. I even did some managing of the folks on them. So, if that is the case, then I think it was very effective training and executed perfectly, and I highly recommend its implementation with other parents.
On a much more serious note, and since I have often been so quick to tell you what your staff has been doing wrong…”
And then I went on to sing the praises of the principal, his teacher, and most importantly, his guidance counselor, who, in my opinion, is an unsung hero and is totally unrecognized for her quiet contributions.
Which brings us to the Kraken, and how the Kraken came to be called the Kraken because really, I’ve been the Kraken for a long time. I just didn’t have a name.
Fourth grade started off much like third and all seemed well. They started before Labor Day this year, which is a new thing because sometimes we have bad winters, and no one wants to be ending the school year on June 28. So, maybe it was the second Friday when the spawn asked me if I could pay the bill for the cafeteria. And I said okay but asked why, and he said because they wouldn’t let him buy things, and he was embarrassed because they said it in front of people. That was tough. Money is really, crazy tight, and I could not pay the like $190 they’d let him run up from last year. So I thought, and then I wrote a quick note to the cafeteria manager and said that money was nonexistent, the spawn was in treatment in for anxiety and could we please keep this between ourselves because I was pretty much packing him everything he might want anyway.
That’s where it should have ended, really.
But the cafeteria manager was new, and she wrote back and explained that they had refused my son a bottle of water that he’d requested. I was ready to be like “whatever” and move along because the spawn carries an insulated, filtered Camelbak bottle with him every day because he gets migraines and has to drink water all of the time. And that’s where Dee weighed in, because we were messaging, as we do all day, most days, and I told her. And she was like, “No, no, no. You must not let this go. He needs water. Think of all of the children!”
Sometimes, we should not be allowed to play together.
And so I wrote back to her and I said something sort of like “You denied my special needs child, whose 504 plan states that he needs to be hydrated, WATER, on the hottest day of the summer, after he’d been sitting in an un-airconditioned classroom all morning, on a day when the School District of Philadelphia closed its schools because of the heat? Do you literally WANT to be the lead story on the news tonight?”
Why I thought that would be the end of it remains a mystery, but things went wild. First, the manager of food services for the district called. He used to work at the spawn’s school, and I know him a little. He forgave the $190 bill, which was AWESOME and not even on my radar, and he promised to put out water everywhere in all of the schools for all of the children and said he didn’t know some didn’t have air conditioning. Okay, that was good. I also mentioned that the spawn hates the new food provider and their chicken tenders are gross. He said he’d make note of it. I thought I was done. Then the principal started emailing and calling. And the superintendent. Like all day and into the night until I was hiding from my phone like a 12 yo caught prank calling boys in 1989 and messaging Dee from my computer.
And Dee said, “See, they listen to you.”
And Dee said, “See, we have saved the children and made sure they have water.”
And I said, “They said to the new cafeteria manager ‘Do you know what you’ve done, woman????? You’ve released the goddamned KRAKEN!!!! Give the children all the water before she drowns us all!!!!!!”
And that’s how the Kraken got named, if not born.