If you’re a regular reader, you can just nod along because you know all of this. If you are a parent of a child with a disability, or a special needs parent of any sort, read it over, feel free to use it as a template or copy parts of it. Send it to your problem people and say “Me, too!” Send it to HuffPo, and maybe they’ll send it out for all of us! Having fought battles for years, I am done with being nice or fighting the same fight repeatedly. I didn’t realize how over these things I was, or how exhausted I was with it, until I got here and ran smack into someone who made me realize with her amateur-at-best resting bitch face and cosmic know-it-all bad attitude, that yes, I am going to have to fight all of the fights all over again. Maybe one open letter to which I can send them a link will make this easier. Because my Main Line Resting Bitch Face can top yours any day, and if you want a bad attitude, you’ve chosen the right woman. I went to an uber-private prep school that made Mean Girls look like no big deal and then I did my time with the seven sisters, and if you want survive on the Main Line, you have to got to have game. I didn’t just survive there. I thrived.
If you are someone to whom I’ve given this link, read this now. It’s your one and only warning. Then read the blogs that involved my son that I’ve linked and think hard about where you want to take things and why you want to tangle with me. I look nice, and I can and will be kind and a huge help to you, but don’t let that fool you; I got over putting up with bullshit and making peace years ago. I’m the single (as in only) parent of a child with special needs. I am a warrior. I’m the fucking Kraken that you do not want to release. He is my son, and I’m the mother lion in the Nat Geo video who tears apart anything that is perceived as a threat to her cub’s well-being.
To Whomever I Gave This Link:
I wanted to speak with you about your recent interactions with/about my son in the hope there is something that I can do to intervene in what seems to be a relationship that is off to a terrible start or has become strained. I’d like to help improve it so that you might become a resource for him here in Key West rather than someone he wants to avoid. I’d let the whole thing go entirely, but he really wants/needs to be able to do whatever it is that you’re impeding, and he’s upset. And when he’s upset, I’m upset. And when I’m upset? It’s not pretty. That’s how parenting works sometimes. I want him to feel comfortable, not necessarily happy, but comfortable, and safe, and somehow you’ve gotten in the way of that. I know that you have a lot of wisdom, advice, and skill-building ideas to offer him, and I want to clear this up sooner rather than later and without involving all of Twitter, most of Facebook, the local news, law enforcement, your licensing agency, the governor and various and sundry disability activists. No, I am not kidding. I don’t exaggerate. Read along.
Daniel has Ehlers-Danlos Syndrome, POTS (post-orthostatic tachycardia syndrome), MCAD (mast cell activation disorder) and severe head and abdominal migraines. He’s sensory, and loud noises and commotion can be hard for him as can some textures and smells. He has a team of 12 specialists at Children’s Hospital of Philadelphia (CHOP). He missed 34 days of third grade, and 62 of fourth. We were in an ER 117 times in the past three years (that’s about once every 14 days for context). Since 2013, he has had five broken arms and two broken legs along with stitches, sprains, and strains (and not because of “boys being boys”). His baseline level of pain is about a 5 on the pain chart – that’s how hard his muscles have to work, and how much it hurts to have them do it, to walk, sit upright, and otherwise just be a person because his joints are so, so loose. That is his definition of normal every day. He is allergic to everything (literally); yet, we never know what’s going to set his mast cells off and cause anything from a mild rash to hives to nerve spasms to anaphylaxis. He’s actually allergic to Compazine and Benadryl. It’s as controlled as it can be, but he lives with that knowledge. Pretty much everything from how medication metabolizes to skin sensitivity to how his body works against itself is different from other people. The list of stuff he can’t do is long, especially for a boy who wants to be active. They call kids like him medical zebras, and their EDS mascot is the zebra.
Confused? Overwhelmed? Trying to let all that soak in? I don’t blame you; I’ve been trying to figure it out for years, and I don’t always know how one thing is impacting the other. Read THIS. It helps explain the cluster.
He’s also a genius. Not even kidding. His last real testing with the Developmental Pediatrics group at CHOP in 2013 put his IQ at 152 when they stopped the testing because he got fidgety and bored, and they did not want to push further. They knew what they needed to know. He has an eidetic memory. He’s also got more self-control than you can imagine, and he can play dumb better than anyone I’ve ever watched, and he does it at school and with other kids because if he’s not interested or bored or wants to be liked or wants to not be different? He’s not showing it, or he’s doing the very least he can get away with, or he’s exhausted and in pain and distracted. He’s been doing it since he was three, and he’s perfected it. Yes, he has that much control over himself. Yes, I realize you don’t believe me because no kids can do that, and you will need to learn the hard way. Yes, I will say, “I told you so,” when he does it to you, and he will if you treat him unfairly. He trusts very few people, and if he trusts you, it’s a gift.
He will blindside with you doctoral-level concepts and terminology unexpectedly when he feels like it, have you googling stuff on your phone while you stare at him like he’s an alien being or zing you with some witty insight or correction that you miss entirely when you make him angry or he feels like being funny. He’s made professionals cry, and a whole lot of them are afraid of upsetting him for fear he’d give up on them. He’s extremely manipulative but pleasant and engaging while doing it, and he’s at least semi-aware that he’s playing games with people to see what they’ll do. And always, always, even when you think he’s not, he’s observing, interpreting, connecting dots and remembering. I won’t bore you with his more (in)famous antics, but there have been some epic ones. His mastery of passive, pleasant resistance is straight from Gandhi’s playbook, and once you are there with him, you are negotiating with a champ, you do need a hostage rescue team, and you will not win that standoff. My best advice is never to make anything a battle of wills with him.
And he’s almost 11. He’s a little boy. He’s full of energy and silliness and fear and wonder and hormones. He likes YouTube and Transformers and Lego sets and video games, and he desperately wants Batman to be real because Batman created his own superpowers. He wants to swim, snorkel, fish, sail, and kayak. And those are some of the few things it’s okay for him to do, so he’s excited to be here. He’s one of the kindest, most compassionate, most brave kids you will ever meet. Despite all of his challenges, he thinks of others first, always. He’s got incredible emotional insight and intelligence. He’s amazing. And if you knew that? We wouldn’t be here with my friends telling me to give you a minute before I literally do you (or your business or club or whatever) in forever, and you reading this and wondering into what you’ve gotten yourself. Don’t believe me? Read this and tell me what a problem he is.
He is very much in control of himself and his world (and given what kind of medical issues he deals with every damned minute of every damned day, he needs to be), and when he feels like he’s losing that control or in danger of some kind? That is when I get involved, and that’s when you need to get worried because it means that his ability to advocate for himself, which is outstanding, has failed. Clearly, if I’ve asked you to read this, we are at that tipping point.
Every one of his specialists thought that moving here would be a wonderful thing to do for his physical and emotional health, and not one had any reservations about it because on the short list of recommended activities that will make him better, stronger, and healthier is swimming, especially outdoors. They also cleared him to snorkel, to learn scuba, and to sail and kayak with the hope that building muscle strength will reduce his joint pain and fresh air and exercise will help lessen the migraines. So far, there does seem to be a lot of improvement. He and I both know that could change on a dime.
I hope perhaps some context about who he is and that with which he is dealing might help repair a relationship that either has gotten off to a rocky start and give you a better sense of him as a person or help you manage one that has taken a turn further south than we currently are. And yes, I mean that. Because if one more person tells me that I am no longer in Pennsylvania, I moved to Key West, as if that is some legitimate excuse to mistreat my son, be rude, tolerate bullies and dismiss me, I’m going to beat the shit out of them with an atlas until they can recite the names of all the states in reverse alphabetical order. I do, in fact, know exactly where I am, why I’m here and what I’m doing. And I know what you’re doing, too.
Moreover, I know Florida law for disabled kids as well as I know the federal law about it. My background is Educational Psychology, but I’ve taught undergraduate Special Education and graduate level Special Education Law for years. I can practically recite ADA, and I know case law about it chapter and verse. Perhaps laws about nudity and open containers don’t apply here and maybe you don’t care about bullying, but civil, criminal, educational and disability laws do. Or they’re about to. Key West Golf Club’s HOA learned that within 10 days of our arrival; happily, they are in now compliance with federal law (to which Florida adheres rather than write its own which states are able to do) for per capita handicapped parking spaces in a development governed by an HOA. Getting the idea yet?
Read about how “the Kraken” came to be here and here. Know your potential enemy and know that I can also be a wonderful ally. Because I have been fighting these battles for years now, and I have won every single one of them against way more worthy opponents than you. I had one of the top school districts in the country and the state terrified of crossing me. I taught their Special Education Supervisor while he was working on his supervisor’s certification. When a little girl held down Daniel and sat on his chest at school in second grade, I had the police on her parents’ doorsteps before the school could even try to deal with it the next morning, and everyone in the district had labeled her a bully on social media. And while the police couldn’t arrest an 8yo for aggravated assault, they did involve Child Protective Services at my behest, who mandated counseling for the kid and her family. I had a teacher who gave my son grief because he was a little more work than the others forced into a psychological evaluation process to keep her teaching certificate two years before she was eligible to retire, and that was problematic for everyone involved except for me. Well, and my son, especially after they moved him out of her room. People have lost their jobs. People have been professionally disciplined. I’ve called in professional organizations; I’ve involved local authorities, I’ve called the news media; I’ve brought in the governor’s office and the Department of Education. I go big first, and then, maybe, I dial it back. I don’t believe in proportional responses where my child is concerned. I have tamed teams of doctors of at CHOP, and I know so much about his medical needs, I deserve an honorary MD.
The list of what I will not do to make his very tough life a little easier and little happier very quickly is pretty fucking short. Know that, adult, who has crossed us. Be wary, parent of the child who hurt him. And remember it.
Hear me when I say: I do not play. I leave it all (and by all, I mean your dignity, your efforts, your misdeeds, your career and your personal and professional reputations) battered and bloodied on the battleground for you to clean up. I don’t fight fair about my son. I do not have the time or desire to meet, explain or educate anyone anymore, and I did not move here to fight all of those fights I’ve already won all over again with the farm team. I am just going to win them in the most expeditious, public, ugly ways possible. Don’t be the one who is used as the “Look at what she did to Jennifer. Just give her what she wants” person. Or do. I don’t care. Be Jennifer. I know someone is going to need to be the example I can point to; it’s okay with me if it’s you.
I hear Key West is a small town? Cool. Then it won’t take long for everyone to know that I’m the mother of the kid no one dares to fuck with. Simple enough.
I’m not asking you to excuse dangerous or bad behavior. I’m asking you to be kind to him and to notice what’s going on and to do your fucking job. I’m asking for something no one should have to ask for at all. Because it’s what you should have been to start. Got that? I’m giving you a ton of personal information about my child so that you have a reason to be nice or fair to him. How fucked up is that? As Glennon said, our goals for our children are for them to be kind and brave. Mine already is those things, but obviously, there’s something wrong enough with you, adult, that you need a reason to show kindness and compassion to a child or to intercede so that other children learn that. That would be strikes one and two, and you’re standing at the plate while the pitcher is getting ready to throw the third.
Invisible illnesses are an unfortunate part of our world. I realize that you could not possibly have seen the little boy who has a whole lot that he fits on a child-sized plate and who has just been through an enormous and radical change about which he’s still feeling pretty ambivalent and anxious because I had hoped I would not need to be so forthcoming about such personal things. He can look and seem like a pretty typical kid.
So, is it possible to let go your thoughts about whatever you’ve dug into about against him? His safety is a great concern to me; I’m not going to let him do a thing that will cause him a preventable injury. Did he do something of which I’m not aware for which he needs to apologize? He is typically very polite, and if he has not been, I’d like to know. I want him to be respectful. I hope that all of this is a really unfortunate misunderstanding, and I would like to see him feel more comfortable around you.
As I said, I want to help both of you reduce whatever has caused the friction, and I’m willing to be the intermediary. I think that he would benefit tremendously from having a working relationship with you. I’m not asking that you overlook rules for him, but perhaps if the two of you approached one another with a bit more kindness and generosity of spirit, you could start fresh, and he would feel a bit more welcome and less upset around you.
Please let me know what we can do to make this better.
With kind regards,
Here’s some suggested reading for you:
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If you’d like, and if you can, and oh please, you can make a donation (literally every penny counts right now and is appreciated – this move has cost a fortune) to The Kraken Fund to help us keep The Kraken going!