I promised you an interesting story, the other day. Well, it was several days ago. I am entitled to a pass on how long it’s taken me to get back to it, because I nearly died of pain an exhaustion. Okay, I didn’t nearly die, but I felt like death. I ended up with a nerve block, and an admission to the infusion center. Look at my bruise.
Aren’t I sad and pathetic.
I swear, I only took that selfie once. Mostly, because I don’t have all that many reasons to fake being sad. Look at what my view is right now.
Yep, it looks like a damn funeral home in here. That’s how many flowers my husband-of-the-century has bought me in the past week, trying to cheer me up. And, next to me, are the world’s best cookies, of which I’ve eaten FOUR, before I started writing. I’m trying to diet. So, I only ate four. I’ll have more later. Life is not bad. So, I can’t pout.
Anyway, it’s also sucky. I was down and out for almost a month. I have a hard time getting back up when I’m down that long. I can’t lie. And, when you get knocked down, over and over again, every time you get back up again, it gets harder and harder. When it takes every ounce of self-preservation to even wash your hair, put your makeup on, and get dressed, and then, you tell yourself that it’s time to get serious and try to, say, workout, and you do, but then you get sidelined, immediately, by a headache so severe that you can’t even see straight, it’s impossible to get motivated again. When that happens every time you try to get motivation to do anything, whether it’s working out, painting, writing, or even showering more than one day in a row, getting yourself motivated to even be a person becomes next to impossible.
Depression isn’t just inevitable, it’s your best friend. It’s like a part of your permanent personality. And, you can’t just shake it off like it’s a symptom of the headache, like it passes with the nausea. It sticks around. It’s as much a part of me now as my own name. It’s part of my identity, maybe more than anything else these days. I have lost so much of who I am, that I don’t know where the depression and loss of myself starts and where I used to be leaves off. Every time I try to pick up where I left off, the Chiari monster reminds me that I cannot do that, and I’m knocked down another peg. Pretty soon, I’ll learn that there are no more pegs on the ladder, and I have to learn how to exist on the ground, find a new me, and be happy with it. But, it’s a difficult reality to accept.
Anyhoo…as I was saying, an interesting story, right? It’s a long one, hang on to your hats. Or whatever it is you hang onto for long stories.
So, if that’s not enough to get a Mama down, raising a special needs kid can take its toll on a parent. Bryon and I, thankfully, have a very solid marriage, and we exist as a great team, with Collin. But, Collin’s special needs are a distinct challenge. He’s stood toe-to-toe with me and told me that he hates me, told me that he wishes I’d died, and told me that he would rather that anyone, including strangers, were his mother. Then, within minutes, scrambled into my arms, and begged for forgiveness and love, and because it’s his nature, forgotten that the prior incident has even taken place.
His rage is so complete, that it consumes his every cell, and then dissipates as if it dissolves into thin air, as soon as it’s exhausted itself. Meanwhile, we get to live with the echoes of those words on our souls, for the rest of time, while we comfort our baby, who is exhausted by what the rage has done to his stomach, his head, and his little body. I always picture his rage like flame that’s burned itself out on him, but left a scar in its wake, on us. It’s like a forest fire that damages the land, but burns itself completely out without harming the surrounding area.
The literature and everything else in the world tells you that the earlier you get intervention, the better, for all spectrum disorders. No shit. Collin wasn’t diagnosed until he was almost nine. NINE YEARS OLD! This is because, I couldn’t get a doctor to take me seriously until then. You know mothers, they are all hysterical, and they don’t really know what they are talking about. They’ve all read too much, or they are all self-diagnosing because they’ve read too many parenting articles.
When he was a baby, I couldn’t get the pediatrician to listen to me that he was speech delayed, despite the fact that he wasn’t even cooing. He was just an “easy baby,” and I should count myself lucky that he barely made a peep. It took until he was nearly two to get services. When he was three, four and five, I couldn’t get the pediatrician to listen that he needed evaluation for ADHD, even though he was so emotionally dysregulated that he was threatening self-harm, at five. A five-year-old that was telling us that he wanted to die! It wasn’t until kindergarten, when he began “assaulting” students with physical affection, and disrupting school, that I could get him tested. And, I couldn’t get them to evaluate his intelligence until a teacher agreed with me. It took another four years before someone listened to me about all of that not being the whole picture, and only because when I took him to the appointment, I kept pointing at my child, who was meticulously folding paper boats out of the exam table paper, and lining them up in rows, and refusing to talk to the doctor, and asked him to explain the behavior he was seeing, if it wasn’t ADHD or simply being “smart.”
When the evaluation came back with Collin on the autism spectrum, no one was surprised, and Collin was, quite literally, thrilled. He was happy to have a description to match how he’d always felt his brain worked. He quickly identified with the autistic community, and participated in the Autism Speaks walk that year, raising a great deal of money. He has been immensely proud of his autistic identity, and we’re proud too. We were relieved, believing that his label would open the door to services that we so desperately needed, and access to care and answers about how to help our child.
We’ve had nothing but doors shut in our faces, ever since. We’ve been told, “no,” more times in the last year, than we’ve ever been told, since his diagnosis. In California, especially in our area, there are almost no providers for ABA therapy. We’ve been told, “no,” there are no providers that meet the licensing requirements to help your son, in your area, that can provide you care and services. We’ve been told that we can meet your son, provide you a report, and tell you how much care he should receive each week, but we can’t provide that care. In fact, someone did just that for us, without telling us, in advance, that they wouldn’t be able to provide the care. They came to our house, once a week, for six weeks, met with us, and observed Collin, wrote a report that indicated a provider should come for ten hours a week, then told us that they wouldn’t be able to come. Needless to say, it’s been frustrating.
So, you can imagine my delight when we landed on a company that supposedly did it all, and they were available. This company has a therapist, that would see Collin for individual therapy; they provided ABA therapy; and, they had a social skills group, which met once a week, and worked with the children on formulating social interaction with their peers. It sounded like a match made in heaven. They are in downtown Long Beach, which is about a thirty-minute drive, and while the ABA would be at our house, it would require me to drive to downtown LB, at least twice a week, which is not ideal. Still, if it was a great match, I’d be willing to do anything, especially at this point in our searching. I’m still not keen on freeway driving, at this point in my recovery, but somehow, for Collin, I’d make it happen. I’d practice on weekends, and I’d figure it out. Whatever it takes for my son. Whatever it takes. Always.
Alas, I called them for six weeks, once a week, trying to get them to call me back. I’ve found that getting a hold of a therapist in this field is like a straight ice dancer. One person I called, I got a hold of immediately, but the first thing she did, after answering the phone with the greeting, not of her company, but by saying “Yello!” was give me the first and last names, and locations in my neighborhood (as means of reference) of other families she works with. To top it off, she told me what conditions they have, and what she treats them for. She also told me what types of therapies she provides them. I felt uncomfortable with her, to say the least. Anyway, I finally got a hold of someone in this office, and they scheduled Collin for an appointment.
The doctor seemed like a miracle. He seemed like he was going to answer all of my hopes and dreams, and I was incredibly relieved. He was super comforting on the phone, and except for not apologizing for not calling me for weeks (I may have cried on the last message, begging him to call me back, and saying, “I’m just a mom who really needs you to call her”), he seemed like he was really ready to help. He kept saying things like “does that seem like it will help?” like he was offering me comfort and appeasement. I felt good about the whole thing.
But (of course there’s a but! If there weren’t it wouldn’t be an interesting story, would it!) the place is called Advances in Mental Health and Addictions Treatment Center, which threw me. However, it was recommended to us by our case manager, whom I trust. Whom? Who? I can never get that one right. She said she had people who were happy there, and that the “Addiction” piece is just what they are called. It’s an umbrella, that there are lots of therapists there that do other things. M’kay. Don’t judge a book, right? Collin can go to a big office that does other stuff, doesn’t mean he’s on heroin. They claim to do all kinds of things there, like treat anorexia, and even multiple personality disorder…wait, it’s called something else, now. Eh, who cares? He doesn’t have that. Or, an addiction to heroin.
Whelp, we walked in, and the waiting room, no joke, had at least forty people waiting for doctors. This place was clearly a place for county services. It was, shall we say, ghetto would be an understatement. Collin and I shared the last space, not chair, space, left to sit, which was the edge of a bench. Of the forty people waiting, roughly two-thirds were in active states of withdrawal, either shaking, choking back vomit, or sweating profusely. Some were mumbling. Many were leaning on walls, some were pacing. It was almost scary.
Then…we find out our doctor is running…two hours behind. Two. Hours.
I’d gotten a ride there from my neighbor (I made a new friend! More on her another day. She’s the best!). So, I could not, in good conscience, let this lovely person drive around, with her children, for (over?) two hours, while I waited on a doctor, for that long. So, I tried to get the girl behind the window, to tell me just how long the good doctor was going to be, and if she didn’t know, if she could please reschedule me. This is how productive that conversation went:
Me: How long is the doctor going to be?
Girl: Well, it could be a few minutes, or it could be longer. It depends on how long he spends with patients.
Me: (Duh?) Can we just reschedule?
Girl: Well, it might only be a few minutes. There’s four people ahead of you.
Me: (OMG 4!?) Why don’t we reschedule.
Girl: Well, he only spends a few minutes sometimes.
Me: Well, even if it’s only five minutes, that’s twenty minutes.
Girl: Well, sometimes it’s only like ten.
Me: You see my point
Girl: (A look of utter confusion passes on her face and it occurs to me who I’m talking to)
Me: That would be forty minutes
Girl: Sometimes it’s less….(Shuts sliding window)
Alright-y then. The doctor started calling in patients pretty quickly after that, so I didn’t really complain. I wasn’t sure whether to be happy about it, or to be annoyed that what I thought was going to be an hour-long review of my son’s history, was actually going to be a ten-minute rapid-fire checklist, but whatever. I was just eager to get the fuck out of what felt like the dirtiest county hospital I’d ever been to. I thought about just walking out, but I’d just signed a patient intake form that said I’d be paying $75 for a cancelled appointment. I debated it anyway, but I’d just had myself a little Anthro shopping spree. I’m nothing if not thrifty.
And, I had made single-serving friends with the lady sitting across from me, who wouldn’t stop talking to me about how these “damn doctors” always double-book appointments so they can pay for their Mercedes and Rolexes; meanwhile, the “common folk” (I swear to hummingbirds, that’s what she said!) have to wait.
I felt like shit while she complained because I wasn’t even wearing anything “nice,” but literally everything I had on was hundreds of times nicer than any single thing she was wearing. I could’ve paid for her entire ensemble with my shoes, and it made me feel terrible. I wanted to just start handing her things out of my purse, whatever I could give her that I didn’t need. I know that’s not the right reaction, but I just wanted her to have more, while she sat there and shook. I wanted her to feel better. Maybe if she had some of it, any of it, everything would be easier? I know none of that’s true, but ugh! Life is hard. Then, I felt guilty for feeling like my feeling guilty was hard, for me. Oy.
So, the doctor: where to start? We got in there, a mere twenty minutes later, for a doctor that was running two hours behind. That might say all that there is to say about the guy, right? He asked me, no less than five times, whether or not I felt like we should re-do his autism assessment from the Boone Fetter Clinic at Children’s Hospital. They are one of the leading authorities for this assessment. So um, no. Secondly, why are you stressing this, and then following it up with comments like, “with cases that are so mild,” as if this is something I’ve made up and am clinging to because it’s my pet project? I didn’t chose this. I’m not foisting autism on my son because I’m bored. It’s not some sort of weird Munchausen thing. Every single mental health professional that’s looked at him, for more than a second, has agreed, well, except for you.
Then, he kept stressing, “ADHD, when it’s a legitimate diagnosis,” while my son was climbing on top of his sofa, and rolling across his rug like a puppy, occasionally, barking. For real. Apparently, this was not hyper-active enough for him, or it was normal behavior for an almost-ten-year-old, I’m not sure which. He said “when it’s legitimate,” more times than I could count, but enough times that I was getting pretty annoyed with him. Between asking me if I wanted him re-assessed, and stressing that his ADHD might not be legitimate, my mommy radar about this guy being a potential ass-hat was going up.
When we stood up to leave his office, to schedule his therapy with one of the therapists in the office, and get him set up for the social group, it finally dawned on this guy that he should, maybe, talk to Collin, the patient. So, he sat back down, and addressed my son:
Doctor: Oh, hey what do you have there?
Collin: My erasers (Collin is fixated on these small animal erasers right now, that come apart like puzzles)
Doctor: Oh, they look really neat. Show them to me
Collin: Walks to doctor and begins speaking inaudibly
Doctor: I can’t hear you. What did you say?
Collin: I said that they come apart. Like this (shows him one but is now refusing to look up, and is pacing and rocking back and forth)
Doctor: They are really neat.
That’s it. That’s the entirety of the conversation that he had with Collin. He made no comment about Collin stimming, none about his refusal of eye-contact, none about the immediate shift from hyper-activity to totally inappropriate social behavior. He made no mention of the fixation and extreme knowledge of a random topic like erasers for God’s sake! Nope. He’s just a normal kid, I guess.
At this point, the doctor gets up, and leads us down the hall to schedule us with another therapist for weekly one-on-one therapy, and to set him up in the social group. He indicated the care with which he chose a therapist for Collin by selecting any therapist from the pool who could see him at 4 pm, not one who works well with children, or one who has special training for children on the spectrum or social issues. Nope, just a therapist who can see us at 4 pm. And the discussion of his personal information, in a hallway that had no less than twenty people crowded around the counter made me feel like his care was both personalized and private. Then, he reminded me again that we could have him re-evaluated, and that minor cases of autism have the best results of “cure,” with early intervention.
I bristled especially at mention of the word “cure,” and again at “re-evaluation,” and wanted to get the fuck out of there. But, I had to pee. So, I asked for the bathroom key, and I was promptly told that they door is “permanently” unlocked, so I can just go. The door was not unlocked. It was locked. It couldn’t have been more locked, unless it weren’t a door, and it was, in fact, a wall. Nonetheless, a person was in the bathroom, which meant I just had to wait until she was out, and then catch the door, before it closed. Mind you, this wasn’t a single-occupancy bathroom. Nonetheless, while a person is peeing, you can’t very well ask them to open the outer door, now can you? Well, you can, but she won’t open it.
I found out that this was the trick, from who I can only assume was a meth addict, based on her missing teeth and facial sores, who was also waiting in the hall, for the bathroom. Still, she was a nice meth addict, and clued me in on how to use the bathroom. I insisted that Collin come into the ladies’ room with me, something I’ve not made him do for a long time, and he kept asking, loudly, why he couldn’t wait in the hallway.
“Because,” I kept saying, in that hiss-voice that parents reserve for situations that mean stop-asking-it’s private-and-I’ll-tell-you-in-the-car; but, kids universally take to mean but-I-need-to-know-NOW! So, of course, he kept asking, and I had to keep saying, “I’ll tell you later!” I didn’t want to say, “I don’t want you standing in the hallway alone.” I especially didn’t want him to be standing in the hallway alone with a back-pack that may, or may not, in the eyes of the clientele of this particular office, contain an iPad, or a laptop, or an iPhone, or any other combination of steal-able items for people in active abuse.
I didn’t want my nine-year-old to know what it feels like to have his backpack ripped off his back, and to become the victim of a crime, while his mother is standing a few feet away, leaving him helpless. Worse, I don’t want him to, forever, look at people who are trying to get better, as potential criminals, the way I was, at that moment. I want him to be full of hope and promise. I don’t want him to feel like he has to guard his back-pack, or his little body. I want him to let me do that for him, for as long as he possibly can.
It was, at that moment, while we were in the bathroom, that he realized his Batman sweatshirt was missing. He was sure that he had worn it into the Doctor’s office, and he was sure he’d forgotten it in there. We went back upstairs and asked for it. Nope. We’d looked in the waiting room. Nope. We looked in the hall. Nope. We looked everywhere we’d been. Nope.
So, we had to have a long chat about how when people, in places like this, steal things, we don’t have to like it, but we have to recognize that maybe it’s an act of accidental charity. That person needed it more than we did. Maybe it was a little boy who really liked it, and they took it home; or, maybe it was one of the many women in the waiting room, and they took it home for their own little boy. So, we should be grateful that we helped someone today. We should be even more grateful that we can afford to go right home and replace it, and that we are comfortable enough to do so.
We don’t have to be happy that someone took something that didn’t belong to us, but we can be happy that we aren’t in the position to have to steal what isn’t ours, in order to have what we want. My brave and sweet boy didn’t shed a tear, and was actually really sweet about it. He imagined all kinds of scenarios in which a happy little boy got his sweatshirt, as a great and wonderful gift, and he was really glad that someone was to be made happy by it.
Then…we got in the car, and realized his sweatshirt was there! Still, I was a little uncomfortable with the idea that we would potentially be visiting an office where the fact that his sweatshirt being stolen didn’t seem like an unreasonable possibility. In fact, it seemed obvious. And, I wasn’t being judgmental, or ridiculous. It was definitely the kind of place where a kid’s sweatshirt would’ve been stolen. When we went back to the office to ask for it, the doctor said, “probably got stolen.”
Still, when I got home, I wondered if, maybe, I wasn’t just feeling overly defensive about what the doctor said, or overly judgmental about the place as a whole. I make a pretty big effort to really see the world from all sides before I make a call on things I’m unsure of. I make sure I get another opinion if I’m having a really negative opinion on something. It’s gut-check time, right? I gave the run-down to my friend in the car, and she said the whole thing sounded icky, but she’s my friend, she’ll agree, maybe.
So, I called Bryon, who will always be honest with me. He’s my husband, but he’ll tell me if I’m being a brat. The first thing I said to Bryon was, “I am going to tell you this whole story and you tell me if my funny feeling about this doctor is warranted.” Bryon said, “Stop. Don’t bother telling me the rest. Your feelings about care for our son are always right. You’re his mother. When have you been wrong?” Awww. I mean, come on! But, I made him listen anyway, and begged him to tell me if I was being too quick to judgment.
He said that the doctor was an asshole and to call him back, and cancel Collin’s upcoming appointments, that we’re never going back there again. Ever. I feel better about it, and we’ve not been back. But, it puts us back to square one with therapists. Again. Now, we have no one. Again. No therapists. No ABA. No groups. Nothing. Again.
P.S. I had to share this with you guys. It’s the first Common Mistake Monday video I made for my students! Yes, it’s super lame. That was the point. And yes, my students DO, indeed make these mistakes! You’d be surprised how often! I LOVE making an ass of myself for my students. The DUMBER you make yourself look, the better! If you make yourself look dumb, they don’t mind asking you what they perceive to be dumb questions! Can’t wait to do another one. I think they liked it!!