Today was one of those intensely sensory days. We went to an open house at a college to which my son was accepted. It started out with something they called a "campus fair." It was incredibly loud. On top of the relentless sound of the voices bouncing off the ceilings and walls of the gym, where the event was held, there was the blaring music, which was set at a volume designed to drown out the sound of six hundred people talking simultaneously.
My son, the Aspie, found it somewhat annoying, but I was clearly much more disturbed by the auditory assault. I wished, so much, that I had ear plugs. The sound was making me feel physically ill. I wondered how often my son, as a younger person, had felt just this way when he said, simply, "it's too loud."
Happily, the rest of the open house was much more moderated, and while there was a great deal of information, a tour, talking, and everything else one would expect at such an event, no further auditory assaults occurred. The morning's event receded to the back of my mind; the day's events wound down. We proceeded on our long drive home.
After getting home, catching our breath, and feeding the dogs, we went out for dinner. There was a long wait, but we were finally seated - at a small table, intended for two, but an extra seat was stashed at the end, in the bar area of the restaurant. To say it was noisy, would be an understatement of massive proportions.
Again, I found myself in a space with incredibly, painfully loud music, many loud voices, and acoustics that seemed designed to accentuate the noise. My headache grew by the minute. I couldn't hear my husband, my son, or even the waiter, because of all the noise. I felt very close to a meltdown. Again, my son didn't like it, but was not nearly as distressed as I was. I could feel how easy it would be, if someone were to demand anything of me, to respond in an angry or hostile way. The relationship between sensory overload and "acting out" behavior was so clear to me. On top of that, I was hungry, which made things so much worse.
I can't imagine what it must be like, for children, in school cafeterias, for instance, where it is loud and chaotic. The children are hungry. They are overloaded with sensory input, often to the point where it is painful. People, sometimes teachers, sometimes aides who barely know the children, are telling them what to do and where to go; the demands may be appropriate, and they may be unreasonable. And these children know they have to come back to these situations the next day, and the day after; day after day, week after week. No wonder so many children start engaging in what is then labeled "school refusal." If I had to face what I did yesterday, every day, I would refuse, too. And it would not be defiance, or oppositional behavior; it would be self-survival.
This is totally off topic, and it would take pages to trace how I got here, so I'll skip that part and just dive in: I'm thinking about the attorney who represented my daughter's mother (yeah, I know, your head is starting to hurt already) way back when my daughter was my foster daughter. Sometimes, I feel so much anger towards this woman, whom I have never met, it scares me.
I know that lawyers have an obligation to zealously represent their clients. I also know that zealous representation does not mean without limitation or regard for others - like the client's own child. A client in a dependency case should, must, be concerned about the well-being of the child. But this lawyer had a deep, unshakable certainty that all children - ALL children - belong with their biological parents, no matter what!!! And that is the result for which she fought - without regard for anything else. She did not care what was good for the child, what was good for her client, what was good for any other children in the family - she wanted every, single child that she could litigate over, to be back with her client, the mother.
So, my daughter, essentially a pawn in this woman's game, was relegated to staying with the mother when others of the children were removed, because of abuse and severe neglect (fun fact: more children die from neglect than from abuse). She stayed for two and half more years, after the others were removed. During that time, she experienced, of course, abuse and severe neglect. She was also pimped out by her father, and raped by more than one man. She was seen by neighbors fellating neighborhood boys. She was four years old. Yes, Ms. Attorney, you did her a huge favor, allowing her to stay with her mother.
"But that's not all," as the promos on TV always tell us. You made sure her mother had control over everything she possibly could. You made sure that her mother prohibited her from cutting her hair. She wanted to cut her hair short, when she was seven or eight years old. Why shouldn't a child that age have some say over how she wears her hair? Because her mother didn't want to allow it, and you made sure she had that kind of control over a child who didn't know where she would be living, or who she would call "Mom," from one month to the next. Good job.
But that, and the refusal to allow her access to her favorite toys from her mother's house - those were the small stuff. The big stuff was the stuff the smacked us in the face much, much later; after we'd adopted her.
It turned out that those "supervised" visits that took place so close to bio Mom's house, so it would be "convenient," even though she had door-to-door transportation provided when they were held elsewhere, weren't so well supervised, after all. At one of them, when my daughter was about eight or nine years old, and it was pretty clear that eventually, after you did all the foot -dragging and court appeals you could do, my daughter would be freed up for adoption, and we would be adopting her, your client - the woman who you insisted should be allowed to raise my daughter because my daughter belonged with her - elicited from that little girl a promise: a promise that when she was eighteen years old, and she was able to make her own decision about where to live, she would come back to live with her mother.
My daughter is a person of integrity. As she grew older, and age eighteen no longer seemed quite so far away, the prospect of the time coming when she would have to fulfill the promise became intolerable. She became severely depressed, suicidal. She could not go back to live in the house with a man who had sexually assaulted her, and the woman (her mother) who had not only witnessed it, but had denied knowing of its occurrence. My daughter believed she could not renege on her promise. She saw her only way out as suicide.
Ms. Attorney - I believe you set up this situation. I believe that you, in your relentless, soul crushing insistence that only a birth mother is the proper person to raise a child, set up the ongoing living arrangement, when my child was a pre-schooler, for her to be repeatedly sexually assaulted, and then, when she was a somewhat older child, to be placed in a position where she was not protected from the woman who was supposed to be the person who was supposed to be her primary protector.
The good news is, my daughter is great! She's grown up, with the help of countless people (mental health professionals, educators, amazing people who went way beyond what would be "expected"), she has survived some very difficult times. She now has her own family, and is happy. Her early life still affects her - it is not possible to "get over" the kinds of early life trauma that she endured. It is possible to learn to live with it, and to thrive - but it takes a lot of support, and a lot of work.
This is Child Abuse Awareness Month.
We really need to get better at this. "We" being my husband and me; "this" being responding to acceptances to college. It should be easy, right? "Wow, you got in! That's great! Congratulations!" It seems so easy. But in our house, like everything else, it doesn't seem to go the way one would expect.
First, you'd think that since our boy who is applying is our third child, we'd have had some significant practice.
Nope.
Child #1 only sort-of applied, and to only one school, very late, and it was a school that pretty much accepted anyone who was graduating from high school. So, there wasn't much practice there.
Child #2 applied for real, and we were very happy with his acceptance, but he applied to only one school, and when he got his acceptance, decided he wasn't going to bother with any more applications.
So on to Child #3. One day, he got an envelope from a school we knew he was planning to apply to. "Did you tell them you wanted more information?" "Not exactly." He opens the envelope, waves a folder that says "Congratulations," and says, "I guess I got in." "Wait, wait, did you apply there?" "Yes." "When?" "About two weeks ago." "Um, you never mentioned it. Well, congratulations!!!"
Sigh. OK. Not exactly how the first acceptance is supposed to go, but it's going to get better, right? Wrong.
"I just got an email congratulating me on being accepted to X University."
"Was it an acceptance email, or was it an email that assumed you'd already gotten a letter?"
"It assumed I'd gotten a letter."
"Well, congratulations, assuming you've been accepted!"
"Thanks. I guess."
He looks almost as confused as I feel.
"Um, didn't you just apply there two days ago?" I know, that's not appropriate, but how can someone get accepted in two days? I mean, really!
Well, no, he says, it's been a bit longer than that. Maybe a week.
I realize I'm old, but a week?
He has a few more applications out. I'm hoping that he gets some acceptances the old-fashioned way - the thick envelope in the mail, when we already know he applied.
But of course, this is the good stuff, and I am totally not complaining! Maybe he'll get the thick envelope in the mail today!
"The only thing that stops a bad guy with a gun is a good guy with a gun," said Wayne LaPierre, NRA's executive vice president.
It's like having a really bad song stuck in your head.
I'd ask what he could possibly be thinking, but I know, he isn't. He's posturing.
Armed guards in every school? There were armed guards at Columbine. There was a police force at Virginia Tech. And Fort Hood. Fort Hood? Really? What could he even be thinking about?
But those are "only" the big ones. Those are the cases where everyone can be pretty comfortable saying who the "bad guy" is. But so many times, it is not so clear who the "good" guy is, and who the "bad" guy is. Life is messier than that. In real life, it often comes down to after-the-fact determinations that are based on piecing together bits of information that police and DA's try to pull together. It sometimes comes down to: the bloodier (or dead) guy is the "victim" (= good guy); the not-as-bloody/sometimes-still-alive guy is the "perp" (= bad guy). Does this always work?
We don't hear about most cases of shootings. We don't hear about who the shooters are, and how they perceive themselves. Many of the people who some of us might consider "bad guys," consider themselves to be "good guys." They believe that "their" country is being "infiltrated" or taken over by foreigners or atheists, or other wrong-thinking people, and that they are "saving" the country from people who are ruining "their" country.
Who gets to decide who is a "good guy" and who is a "bad guy?" For that matter, who decides what constitutes a guy "with a gun?" Does it have to be a gun that is currently being deployed, or is it just the fact that someone carries a gun? Or owns a gun? What does it mean?
I am, truly, haunted by this awful, awful refrain that won't leave my brain.
I truly hope that some lunatic, who believes himself to be a "good guy," and believes LaPierre to be a "bad guy with a gun," doesn't decide that he needs to stop LaPierre. We need more sanity, and LaPierre certainly didn't help to provide any.
Dear ER Psychiatrist:
It has been well over ten years since you "treated" my child at the community hospital ER, where she was sent from the partial program where they had lied to me, before accepting her as a client, telling me they were equipped to treat adolescents like her, and that they understood that not all self harm was suicidal, and she'd "be fine" there. Her first day, they sent her to you, because she had cut herself - not deeply, not in a way that could be construed as an attempted suicide, just a scratch, really. But she wouldn't promise she wouldn't do it again. She was honest - she knew she couldn't swear it would never happen again. She knew what you wanted her to say, but since she'd been cutting, on and off, for years, she wasn't prepared to commit to "never again." She had integrity. I had to watch the police handcuff my child and transport her to your ER, where we met you.
You tried to be nice, I guess. You told me that if she didn't pull herself together, she'd be borderline (personality disorder). Unfortunately, I'm one of those parents who actually knows what that means. Also unfortunately, I was distressed enough not to be able to focus enough on some of the realities of the situation. My daughter was 15 years old. You said, several times, "she's not old enough for me to diagnose her with borderline personality disorder, because she's not 18 yet, but if she were ..." Well, Dr. Genius, there's a reason you can't diagnose 15 year olds with borderline personality disorder! And if I had been thinking more clearly, I would have told you that, steadily, surely, and clearly. As it was, I was just overwhelmed and trying to hold it together.
When I got home, I called a couple of my good friends; friends who, as it turns out have a good deal more expertise than you, a psychiatrist in the ER, have about such things. One is also a psychiatrist; but she actually works with patients for more than one and done. The other is a therapist who has worked with the entire range of people, from the "normal" walking wounded among us, to the released from the hospitals without adequate supports and can barely function out in the world types. They both know their stuff, and, they know a whole lot more about my daughter and my family than you do. "What?" they both said, separately. "You can't diagnose a 15 year old with borderline! And there are really good reasons for that!" As one friend put it, "half of teenagers would be diagnosable with borderline!"
Let me be very clear: I made the mistake of saying something along these lines to the wrong person, who looked at me with horror. That parent would not have understood what I was dealing with, the absurdity of your almost-diagnosis, or the pervasiveness of self-destructive behavior in teenagers. Nor would that parent have been the appropriate parent for me to talk to to seek support. But so many kids have a rough time when they are teenagers, and such a small percentage of them grow up to have borderline personality disorder, that what you said to me served no useful purpose.
If you thought you were warning me, to what end? Was there something you thought I could do, to ward off this, admittedly difficult end point? There is nothing that psychology or psychiatry is aware of that prevents borderline personality from forming when someone is at risk, at least not that I am aware of. I suspect there is nothing you are (or were) aware of either, since you made no suggestions or recommendations. So what were you trying to accomplish by saying this to me, when you were sending my child to an inpatient facility, which she did not need? What, exactly, was the point?
I don't remember your name, I don't remember what you look like, but I definitely remember you, Dr. Psychiatrist-from-the-ER. You had an opportunity to do something decent; to say to the partial program: you blew it - this kid wasn't suicidal; she's got issues, and that's why she's in your program! Get a grip. Instead, you sent her to an inpatient facility where she didn't belong. You could have said almost anything to me, her mother. You chose to scare me even more than I was already scared - and I was plenty scared.
I would love for you to know how things "turned out." My daughter is great. She's happily married. She's a mom. But it wasn't in that order. You were right that she was in trouble, but I knew that. I'm her mom! Her issues were not a chemical imbalance, or the product of my screw-ups as a parent. They were the product of the horrors of her early childhood trauma, from before I was her mom. They were the product, in a sense of a very screwed up, ineffectual child welfare system, which fails to protect the children in its care. But you were ready to write her off - for whatever reason. Thank G-d, we found people who could help her, who were not quite so ready to write her off.
OK. So I'm being a bit hyperbolic. But let me explain. When my oldest child was young, there was no internet. I couldn't go online to find things out or get support, so when things came up, I spoke to other moms - real life moms! I know, that's so ... 20th century. And it was the 20th century. It meant that I couldn't find only other moms of kids with her exact diagnoses. It meant I spoke to whatever other moms I found and connected with. Sure, there are some real benefits to being able to find other parents of kids who are struggling with the same issues you're slogging through. And if you've got something rare, or unusual ... the internet can be nothing short of a lifesaver.
But, and this is where the internet sometimes makes me totally nuts ... it is not your left-handedness that made you autistic (or your autism that made you left-handed); the length of your second toe is not related to autism; ear lobe attachment is not related to autism. I think you're getting the idea. When people break down into totally diagnosis-specific groups, they start thinking that absolutely everything they see or notice is related to that diagnosis. Parents start thinking that every "issue" they have with their kid is related to the diagnosis.
It isn't. Kids are, first and foremost, kids. They will have bad days at school, sometimes, just because they have bad days at school. It won't always be about the diagnosis. Let them. They will have fights with friends because they are kids and kids have fights with friends. It's not always about the diagnosis (yes, I know the diagnosis complicates things - but sometimes we parents complicate things even more). We have to let them learn to work it out. We can offer to help them figure it out, we can offer to role play, we CANNOT get involved in every mini-drama that unfolds. It's not fair to them, and it's not healthy.
Sometimes kids who are well-past toilet training age have regression issues. Some of those kids are autistic, some are not. But if the only parents that parents of autistic kids ever talk to about "issues" anymore are parents of other autistic kids, we think it's an "autistic" issue. Surprise! No one wants to talk about it, but it's not necessarily an autistic issue. And if we "blame" the autism for everything, we can miss something else ... and it could be something more important.
I love having other "autism moms" to talk to. I don't know what I'd do without the internet. But I miss having the "real" community that seems to have dissipated with the emergence of the virtual world. The real world was so much more nuanced, had so many more sides to it - and there was always such a wonderful jolt of surprise when you found out something new and unexpected about someone you'd known for a long time in a different context. Somehow, the online relationships tend not to be quite as dynamic.
I realize it's not in the spirit of the season, but I am pissed! And this time, it's not because of either (any?) of the recent meetings I've had with the schools/school district. It's because of an article that has been posted and "oohed and aahed" about on several of the lists I'm on. It was called "The Crappy Life of an Autism Mom," and was published at http://www.huffingtonpost.com/kim-stagliano/the-crappy-life-of-the-au_b_37742.html?ref=fb&src=sp&comm_ref=false. Understand: I have no problem with Kim Stagliano complaining about the difficulty of raising three autistic daughters, or wanting to see them grow, progress, "recover" (whatever that means to Kim). I have no problem with Kim referring to her life as "crappy," if that's how she's currently experiencing things. My problem with her post was her constant, inaccurate, sniping at the neurodiversity community.
Like many who have set the neurodiversity community up as a bogey man to blame for whatever they are angry about at the moment, Kim claims that ND folks berate parents for trying to help their children. What??? She implies that the ND community wants nothing "better" for autistic people than whatever they were born with - no growth, no learning, nothing.
I have never heard anyone - whether they identify from the ND community, from the "recovery" community, or anywhere else, suggest that any child should be denied services that the child needs in order to learn and grow. The ND community disagrees with certain unproven "therapies" that have known risks, such as chelation and HBOT, since they can be extremely dangerous for the child, and there is no scientific proof that they have any benefit. Similarly, they object to certain kinds of therapy that they find dehumanizing. They do not object to mainstream therapies such as speech/language therapy, occupational therapy, physical therapy. In fact, ND-identified parents fight hard to obtain such services for their children. They believe that people (including family members) who work with autistic individuals should consider that behavior is communication, and rather than always trying to make autistic children learn to "look normal," they should try to figure out what the child's behavior is doing for the child. No one suggests, by this, that a child should be allowed or encouraged to engage in dangerous or self-injurious behavior.
I came across an excellent essay about what Neurodiversity really means, as opposed to what opponents pretend it means, in Mike Stanton's "What is Neurodiversity?" http://mikestanton.wordpress.com/my-autism-pages/what-is-neurodiversity/.
It is one of the many excellent offerings in the new book, Thinking Person's Guide to Autism: What you really need to know about autism: from autistics, parents, and professionals, edited by Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg.
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