Sunday, September 14, 2014

Of Baiting and Switching, with Many Footnotes

Thank you for all of your support and advice, on and off-line. I kept planning on updating here but then something would change and it seemed premature to post. And maybe just too painful.

So, June and July … he was able to go to and enjoy camp once the psychiatrist wrote a note saying he couldn’t participate in swimming.1 He made great advances in discussing his feelings rather than just getting angry. But he still couldn’t bear the idea of school in any fashion. Couldn’t go to a new school and face new kids. Couldn’t go back to his school as is. Couldn’t go back to his school with accommodations or repeat 4th grade rather than moving up to the middle school because he didn’t want the other kids knowing he was different. (He is determinedly different in that he has hair to his waist and wears only yellow, but these are the differences he’s chosen and that to his mind make him appear better; he doesn’t want to seem weaker, especially since he’s the smallest and youngest in his class.2) He wasn’t asking to stay home – he understood he had to do school somehow, and he gets bored at home anyway – he just couldn’t think about it without panicking.

But then in early August it was like a switch flipped. He started really talking. He said he was happy sometimes. He even quit biting his nails. I don’t know what did the trick. Likely a big factor is that I asked my husband to give up on this year’s racing season, which he had thrown himself into even more OCD-ish than usual – which is saying a lot. The medication dose was adjusted, though HB seemed better even before that. Really I don’t know what did it, but I was so relieved.

He was even willing to talk about school, but the only option he thought viable was to go back to his old school if they could make allowances for him to ease his anxiety. So our psychiatrist contacted the school psychologist to see if that was even possible (he goes to a private school; IEPs etc. don’t apply). And the psychologist said it would be no problem. The main things agreed upon were 1) that the teachers would not publicly call him out (something a couple of them were known to do on occasion) if he did not turn homework in during the first weeks of school or if he was not writing things down in class and 2) that he would leave a cell phone (purchased for this purpose) in the nurse’s office and if he was panicking, he could sign out of class and go down to text me. He was not allowed to wander the halls, leave class without notifying the teacher, text in places other than the nurse’s office, or generally disrupt the other students.

The weeks running up to school were an anxious time, but he said he was “nervous and excited – nervcited!” He got his nails and hair done for the first day.

And then he marched in and followed the plan. It wasn’t easy for anyone, but he did what he agreed to do. He went in to school every day and stayed the whole day. He participated in class discussions, did some of the homework, and tried not to disrupt any other students. He sent me texts a couple times a day, but they were all asking for ways to handle his feelings and help him get back to class or about boredom with the curriculum (which did look boring and inflexible, rather different from what had been described in the middle school parent orientation last spring).

Some classes went great, though it seemed that not all of the teachers were on board; for instance, HB was berated in front of the class for not bringing in his reading log and was questioned a few times about going to the nurse’s office. Since we had met only with the psychologist prior to school – he said he should be the go-between rather than have us all meet – my husband now spoke with each teacher and reconfirmed with the psychologist the nurse’s office text plan (the psychologist even said – in front of HB – that he could take as long as he needed to text, which was a mistake on his part in my opinion, but what can you do). Toward the end of the first week my husband and I were to meet with the psychologist and the principal to go over how things were going and ways to make it smoother – or so we thought.

The first sign of trouble was when I complimented the principal’s skirt (I really did like it!) and she snapped, “Hmph. Thanks.” The psychologist then asked us to describe how things were going. I summarized events and said that while it would probably have been better had HB had another few weeks before school started, since that wasn’t an option, we hoped that the accommodations he had would help ease him in, tamp down his anxiety, and allow him to get back to his old self and participate fully after a little while, and that while it had only been one week, things seemed to be a little better for him already.

But I could tell the principal was waiting to talk rather than listening, and the minute she opened her mouth it became clear that not only was she not supportive of the plan, she was furious about it and at HB. She said that his not turning in homework was disruptive to the other kids “because it’s not fair.” She was outraged that he had missed any class time to text. She said that his not writing things down during a class was “disrespectful to my teachers, who trained hard to do what they do, and they do it very well – they’re not psychologists.” Then she said that “honestly, he’s just being, well, bad.”  “Bad?” we asked.  “We haven’t heard anything about any bad behavior.” So she said that in addition to not doing the work and leaving class (um, those were on the plan?), one day he didn’t clean up his lunch tray, another day he grabbed a ball from someone at recess, and once he fell asleep in study period. Then she threw a folded piece of paper across the table at me and said, “and now THIS.” I opened the paper thinking, oh god, did he write curse words or make a penis joke? only to find a worksheet on which he had written … wait for it … “I like pie.” “He handed this in,” she hissed. (He had been instructed to go through the motions like this if he felt frozen, so that the other kids wouldn’t be curious and therefore “disrupted.”)

I couldn’t help mentioning that he had been at the school for five years without a single disciplinary incident and that this was the first time we had requested accommodations of any kind, and the principal rolled her eyes.

By this point I knew that this was a horrible and hopeless situation, but I figured the best course was to not escalate. I said that HB should certainly clean up after himself and not take balls. The falling asleep was harder because he was having a lot of trouble sleeping given his anxiety over the beginning of school, but we’d let him know it was not allowed. And then I asked what her thoughts were as to the next steps?

Whereupon she announced that he was no longer allowed to text except during one break and during lunch (times when, of course, he is not panicking). He had to do the work exactly as instructed in class (because he was, presumably, faking his panic?). She would not ask the teachers to treat him any differently than the other kids if he didn’t do the work (and, she said, none of them would publicly shame a child anyway; “that’s his perception; that’s not what happened”). And this whole time the psychologist, who gave us the whole plan in the first place, is nodding to everything she’s saying.

We sat for a moment, stunned. Then I said, “This is very very different from what was agreed upon, and it’s going to be a lot for HB to process. From your perspective, if he’s too anxious to do all this, is it less disruptive to the other kids if he is just kept out sick?” Her reply was to shrug and say, “Well, my son sometimes just can’t face school and I say okay, but that’s maybe three days in a year.”

My husband and I were both wanting to shove the table over on top of her and rush to HB’s classroom to rescue him, but I merely said, “Fortunately we have an appointment with the psychiatrist after this. Originally it was just going to be a parent meeting, but now I’m thinking it would be a good idea for HB to come too.” The principal shrugged again, and the meeting was over.

When we signed HB out, he whispered, “Mom, I don’t think it’s a good idea for me to leave just because I’m having a tough day.” “That’s not it, sweetie,” I said. When we got home we told him simply that the meeting hadn’t gone as well as we’d hoped and gave him the new rules. The look on his face broke my heart. “I can’t do that,” he said. “That means I’m done with that school. And they’re liars.” We couldn’t disagree.

Had the accommodations not been in place we never would have tried to send him back and would have explored other options; now we’re weeks into the school year and have no place for him to go.4 And he’s been set back miles; he gets furious if any sensitive subject is even touched upon (though later apologizes, weeping). We’ve told him none of it is his fault, that there’s nothing wrong with him, that we didn’t realize the middle school administration was so different from the lower school, and that they were the ones who went back on the agreement, not him. But he’s not buying much of that, I can tell. He’s clingier than ever and no longer wants to be in the performance part of his rock school (maybe because it’s called a school?). It doesn’t help that I’m a mess over it; I try to hide it from him, but he’s perceptive. I find it hard to concentrate on anything else. Sometimes I think, stop it, there are people whose kids have life-threatening illnesses. Then I remember that so does HB. At least there’s been no suicide talk recently. And he still isn’t biting his nails, so there’s that.

I feel stupid and guilty. We knew beforehand that this psychologist was someone who liked to be in the center of everything and overstep boundaries, but we didn’t insist on meeting with the principal ourselves. And we assumed that the middle school would be like the lower school without properly checking it out. We took a vulnerable little boy and dropped him into a viper pit.

Oh and, by the contract we had to sign, the school still gets their $25,000.
____________________________________________
He’s a good swimmer but hates it – being skinny he gets cold, he has a phobia about the 6-foot mark due to an incident years ago where he thought he might drown, and while the camp overall is completely relaxed about joining or not joining in on activities, they apparently contract the swimming instruction out to soldiers of fortune.

We never got the memo way back when that most kids with June birthdays were being held back a year from kindergarten unless they were so gigantic they would look absurd. Wish we’d done it then; I suppose he might have been a little bored since he was always academically ahead even being the youngest, but since his emotional and physical age are on the young side could’ve been protective. Oh well.

And he came up with an amazing analogy. He was asking about when he’d have a growth spurt and we got to discussing how there are different types of maturity and some you couldn’t do anything to rush. He mused on this and said, “I think my intellectual maturity is pretty high … but my emotional maturity isn’t.” I agreed and said that a lot of kids with that combination struggled with anxiety and depression, because they can understand things intellectually that other kids don’t notice, but they aren’t emotionally ready to process all that knowledge.
“It’s like being carsick,” he said. “When your eyes tell you you’re not moving but your brain tells you you are, you feel sick. When I know something but don’t know how to handle the emotions I have about it, it’s like feeling carsick.”
“That is an awesome analogy,” I said, “And you know I’m going to bring it up when you’re freaking out, right?”
“Yeah.”
“And you know that it will probably piss you off when I do?
“Yeah.”
“And after you calm down you’ll tell me I’m right.”
“Yeah,” he said, and chuckled. And it totally worked. Even in the midst of an outburst he’d say “I know this is a carsick thing!”

For a number of reasons, our local public school is not an option even if we had an IEP. There are a few private schools that might be able to deal with his anxiety and have the flexibility to allow for his being advanced in many ways and behind in others; we’ve got calls in and visits planned, but it’s not clear there is space for this year. We could home-school him if we hired someone to do it (and that may end up being our only option), but it would be immensely difficult not least because he trusts so few people – fewer now – and he’d be forced to be alone with a stranger much of the day.

21 comments:

Jillian said...

Oh wow. I'm so sorry to read this. I'm new around here. Some of what you say about your son feels familiar to me as I parent my sometimes-challenging older son. I know having the right teachers and right school is critical in every way. I hate hearing about stories like yours, where the family is so clearly let down. I hope you find the right path for him for this year soon.

Anonymous said...

Also really sorry. Also have a bad tendency to offer advice, but, honestly you know more than me and you are doing the best you can.

Courageous to share, so that others can know, too, to fight for their kids.

Mir Kamin has written about her daughter's illness (though, her daughter is a teenager);

http://www.blogher.com/never-after

her daughter is doing well now, http://wouldashoulda.com/

I hope sending the link isn't unhelpful.

zb

Jen said...

So so sorry to hear how difficult this is for all of you. Many good wishes for many improvements to come. Abiding with you, however indirectly.

Anonymous said...

I see a lot of similarities between your son and mine. My son was diagnosed with Asperger's Syndrome at age 6. Have you ever explored that as a possibility? It seems like you're doing such a great job with HB! I know how awful it is when your child is struggling. You're in my thoughts!

~Jen G.

Anonymous said...

You may not have the energy for this particular fight, but in your shoes I would absolutely call a lawyer to get (at least) my $25k back. If you pay money to a private school and make a contract for certain services (whether this contract was verbal or written down) and those services aren't provided, then that contract has officially been breached and the money must be returned to you. I'd also consider suing for damages, plus the expenses you're going to incur for finding a new school/tutor for your son. Hell to the no on this one. And I say all this as a mild-mannered and not particularly litigious Canadian!

-Anne

DoctorMama said...

zb - links always appreciated!

Jen G - yeah, while he shares some things kids with that often face - depression, anxiety, anger especially - he is actually so finely tuned to the emotions of others that it's often a problem for him. He's almost the mirror image of the spectrum, if that makes sense.

Anne - we have lawyered up, for the first (and I hope last) time ever, and I love the person we found! Partly we did this because we have some tuition insurance and we don't want to inadvertently jeopardize anything we might get from them, but also because we want to leave some kind of impression on the school board of directors in the hopes that it MIGHT help other kids in the future. Just complaining about it definitely won't, as we've belatedly discovered via internet searches. If they also lose some money on this it would be wonderful.

Anonymous said...

Do you know Tedra of Buffalo Mama (former Bitch, PhD)? I started reading both your blogs around the same time several years ago, and oddly you seem to be in similar places. Your situations are far from identical, but maybe the connection will help.

http://buffalomama.wordpress.com/

Val said...

Wow! Strange that I had the urge to surf by, after months of not checking in... (but I've used your examples of Moth & Foosa to motivate my fat-cat clients ;-)
I'm afraid I can't do much more than offer moral support - we've been on the rollercoaster ourselves, W/Ex dragging our son into our court disputes over equitable child support/visitation. I took Z for evaluation by highly-rated psychiatrist last Jan, she found no need for medication even though his grades have dropped & he's long past the age for me to shepherd him (16) - the grades themselves have to be self-motivating at some point!
& of course it breaks my heart that his father can't recognize that he's breaking HIS OWN SON down, ruining his college prospects - but didn't mean to clog up your comments w/my expose... I certainly hope you can work out a homeschooling arrangement for HB for now, w/eventual mainstreaming. Best wishes from a devoted maggot ;-)

Anonymous said...

Reading here forever, but rarely comment. This situation breaks my heart. But I find comfort in the fact that HB has such amazing parents in his corner. I have no advice to offer, just wanted to let you know you are all in my thoughts.

(another) Karen

Denise said...

Funny, that's something I've often said about my older son - "You've heard of Asperger's syndrome? He's got the opposite of that." I feel like it's very difficult to tease out what is behavioral vs. emotional vs. cognitive in his situation.

Anyway...hoping you find a great school for him.

townmouse said...

Can't offer any advice or anything but sympathy and to wonder why people go into teaching when they clearly don't like kids. It sounds like a year out spent reading books, playing music and goofing off won't do HB any harm, if you can find a way to call that 'home schooling'...

Anonymous said...

I just wanted to say: as a similarly empathetic, anxious child who grew up to be an adult who spends a lot of time in therapy, you're awesome for recognizing and dealing with this now. I know it's so, so hard. I wish my parents had responded half so well, and half so helpfully, instead of just making jokes about me being shy and bookish, when actually I was in my room, alone, crying and wishing I were dead. I'm dealing with it now, but it would have been much, much better if I'd started dealing with it sooner.

Anonymous said...

My best friend's daughter (now in 8th grade) had many struggles with anxiety (primarily over academics) although she is extraordinarily gifted verbally. The family lives in LA and finally found a school to meet the needs of their daughter (labeled 2E or twice exceptional -- gifted but with a learning difference): Bridges Academy (http://www.bridges.edu). It may be worth a call to see if Bridges can recommend a school near you.

For what it's worth, I think adore your blog and think you are a terrific parent!!! Hang in there!

WB

TC Seattle said...

I empathize with your struggles in advocating for your child. We left public school for private due to a bad principal that did not advocate for students. 6 years later, we are back to public for high school and so-far-so-good.

It has been shocking for me to see so many teachers/school administrators that have limited capacity to adequately recognize and accommodate students outside of the "ideal student" model. And frankly, being a parent of a child of each gender, boys are disenfranchised in the system by far greater experience.

There has developed an entire service industry to assist in advocating for your child's education needs. You might want to consider googling educational advocate in your area and make some inquiries. Legally public schools are required to provide services to meet your child's needs; however, offering everything that could support their best educational experience is not routinely offered.

jill said...

If you ever move to public school, get a 504 plan. It's for when it's a justice issue rather than Spec Ed issue, and it's what we have for my son due to adhd, social anxiety, etc.

So, so angry on your behalf. And hurting for HB and all of you.

Anonymous said...

Don't know if I've ever commented here, but I just have to say how sorry and truly horrified I am that the school reacted this way. I am angry on your behalf as well.

-B.A.

DoctorMama said...

Thanks LC - just being super cautious!

The lawyer we have is part of an educational advocacy group so we are learning about the options and it's also good to hear the experiences people are sharing here.

and I hadn't read buffalomama - wow eerily similar, down to the long hair! I actually read parts of it to HB and it made him feel a lot better. He thinks he's the only one and whenever I give him someone else's story he's visibly fortified.

Anonymous said...

I'm horrified at how many people can't find suitable educational environments for their children. I have six friends or friends of friends who have been or are in similar situations, and the despair and pain they feel is awful to see. I so much wish there were choices for kids for whom "regular" school isn't adequate. It's not a problem with the kids, but that's how it's always painted. I hope HB and you find something that works for him and gives you both peace.

Anonymous said...

Hey, glad you've got a lawyer -- I'm another Anne from Canada (I see one has already posted; I am a litigious one, though, unlike the other Anne) and I wanted to second all that.

I have a six year old boy who has just started grade one... I worry that he might face some anxiety/depression stuff as he grows up, so I read your stuff with concern and sympathy.

I am just furious that the people at your kid's school could be so plain ol'cruel to HB, and so judgmental and dismissive of these real problems and their role in exacerbating them. Way. To. Go. Assholes.

It ought to go without saying that no one would blame you for believing the psychologist and believing that these special needs could be met. What harm did they cause?! I would have thought that a private school with that kind of tuition would have a more accommodating approach. I would have assumed it, after five years as a client.

Take care. Thank you for updating.

Anonymous said...

I have not checked in recently so I am so sorry you are going through this. Many people have commented on their own children's struggles, and I would add that we too are going through this with our so, age 16. It is frightening to watch the light go out of their eyes and withdraw from formerly enjoyable activities. He too is having difficulty attending school, but fortunately, at least so far, the accommodations we have asked for have been met for the most part. There have been many hiccups though, such as the VP and guidance counsellor meeting with him without our knowledge or consent during the first week of school to suggest that he take an extra year of high school (he is in his last year). What! Way to make him feel like a failure before he has even had homework. You will get through it. Be well.

OMDG said...

This is so horrible. It makes me angry to hear of a school behaving in this way, and mildly terrified of the school system in the area. You did the right thing pulling him out (and don't even think about the 25K). You are good parents -- please don't blame yourselves.