Open Letter to the Psychiatrist in the Community Hospital ER

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.

The Internet Is Destroying Parenting

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.

Neurodiversity - Figure it out

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.

Still Waiting for the Other Shoe to Drop!

It's like everything is skewed just slightly - but in a really good way.  My grandson was with me the afternoon/evening of the first day of school.  There was homework (this was not the good part).  It was an autobiographical letter to the teacher, minimum two paragraphs in length (definitely not the good part!).  There were deer-in-the-headlight eyes; there were tears; there was frustration.


I had to talk the boy through the entire thing.  I had to explain that lots of people (in fact, lots of people from this very household) have trouble with writing.  I even explained that there were lots of these people who had these troubles, but the people were just spread out, so it didn't always seem like there were lots of them, so it could feel like you were the only one.  We talked about what kinds of things he could talk about (the teacher had suggested the prior year's events as one of the sources of information - the boy, of course, interpreted this as the only source).  After we had talked about this, we talked about different ways of organizing the information.


Eventually, the boy was ready to compose.  We had a false first start, but after talking through it, we got to where he was really ready, and he talked, and I wrote.  It was not a literary masterpiece, but it was two paragraphs.  He was SO happy.  It was done.


But here's the amazing part: when I emailed the teacher, it was one of those emails that's part "he worked really hard," part "he has a tough time with stuff like this," part "let me introduce you to this aspect of the kid, since it's the beginning of the year and I don't know what info you have/whether you've seen the IEP/whether you've matched the IEP with the kid," etc.  Since I don't know the teacher and he doesn't know me, and on top of that, I'm the grandmother not the mother, there are a LOT of eggshells upon which to tread here.  The response was phenomenal!  He told me how proud the boy was when he handed in his work, and that he had already been in close contact with the autism support teacher and knew a lot about my guy!  He also thanked me for all the hard work I'd done with the boy (I don't think my efforts had ever been so acknowledged - ever!), and told me that this assignment was probably the hardest one of the whole year.


He then, wrote me the next day to tell me about the great job the boy had done on another writing assignment, in school!  Wow!  The boy had a really great teacher last year, and we didn't know how we'd adjust to someone new.  Well, this one doesn't seem to be taking a whole lot of adjusting!  Some teachers are just amazing!

New School Year

I can't quite believe that a new school year is about to start.  The summer seemed to have disappeared before it started, and now, now ...  But I'm determined to start the school year with total optimism!  My boy started his community college class already, and he was happy to be there, happy to have class start, and ready to go!  With that class starting, the rest will just follow along naturally.  And, he has the same, wonderful, amazing homeroom teacher that he has had for the past two years.  Happy, happy, happy!!!  And his English teacher is the same as last year, which is a good thing (it's rare that an English teacher is a good thing for this boy, so if we get one we want to keep, AND we get to keep her, well, that's something that's beyond amazing!).


So, all in all, we have to be starting this year with a spring in our step and a smile on our face!


As to the grandson, for the first time ever, we did not have to go in to meet the teacher during a pre-school meeting!!!  It turns out that his assigned teacher is one of the two teachers that the boy was hoping for, so he is overjoyed at the teacher assignment!  Since he knows his teacher, he didn't need to meet him (yes, him - for the first time, he will have a male teacher! awesome).  Turns out, when the boy had an upper grade "buddy" a few years ago, it was from this classroom, so he knows the classroom pretty well!  Cool!


All the stars are aligning for the boys this year.  We're very happy.  I hope everyone has a smooth transition into the new school year!

Kids Say the Darnedest Things

We're spending the weekend in the mountains with my daughter's family - my daughter, son-in-law, and grandson.  This morning, my grandson says to me, "How did you sleep?"  Isn't that sweet?  Any typical parent or grandparent would think that, if their child asked a question like that.


We spectrum parents, however, are a bit ... warped.  After my sweet conversation with my sweet grandson, I turned to my husband and said, "I wonder who taught him that?"

My Grandson Broke His Arm

My grandson broke his arm at school yesterday.  It seems, he was running to get a drink from the water fountain, because he was "so thirsty."  He tripped over his feet and fell.  It happens.  Kids fall, they get hurt.  It's no one's fault.  And yet, and yet ...


My grandson has PDD-NOS.  Things are never simple when someone has an autism spectrum diagnosis.  We have been arguing with the school since ... forever ... about his need for additional services.  As we argued that he needed more services, his services were slashed.  He has had no PT since he started elementary school, and his OT services have been reduced from direct services, x amount of time per week to consultation only, y amount of time per month.  We were told, by someone who must have been observing someone else/insane/choose your explanation, that he could move from sitting on the floor to standing without the use of his hands.  It would have been funny if it weren't impacting the boy.


So, after he got hurt, my grandson was unable to get up from the sitting position on the floor that the kids assume during the gym class he was in.  He, apparently, requires the use of both his hands to stand up.  Because it was approaching the end of the year, the weather was hot, and who-knows what other reason, the class had a "bonus" class of gym.  He was not able to participate because of the pain in his arm.  He visited the nurse's office three times, complaining of pain - something this child never does.  He was unable to put his chair up on his desk at the end of the day (the usual end-of-the-day routine).  My daughter was not told about any of this.  At 3:00 she received a call telling her only that her son had been to the nurse's office, impliedly once, after having fallen during gym class.  Another tid-bit, when the boy fell, he did nothing to try to break his fall.  No reflexive trying to catch himself.


Beyond this, and to me, far more disturbing, was his response to the injury.  He didn't cry; he didn't scream.  Breaking a bone, even a minor break, hurts.  Even for a child with a high pain threshold, this is not something one shrugs off, and the fact that he went to the nurse's office three times means it was a big deal to him.  What he said later said it all, for me.  He tried not to cry, even though it hurt - a lot.  He said he screamed silently.


The casual observer, or the uninformed might wonder why.  I, unfortunately, know why.  School has worked very hard with him, over the past couple of years, to not cry at school.  To him, there is no real difference between not crying because you're upset about having trouble opening your water bottle and because you broke your arm.  The rule is "don't cry at school."  He's learned the rule.  He's internalized it.  He's proud of himself for doing so well with it, and he's gotten lots of positive feedback for it.  No one has been able to explain the difference between appropriate upset and inappropriate upset. I'm not sure they've tried.  So they have a star pupil, who doesn't cry when he breaks his arm - he screams silently.


And so do I.