Boy Out of Context

The Croup - Multiple Stories

The first time I heard about croup I was young.  Sitting upstairs in our TV room, watching Terms of Endearment on cable, and hearing Debra Winger tell the philandering husband that baby Melanie had "the croup."  Remember?  The older boy had it twice?  And the husband shrugged, and she said, "I guess you weren't alive then."  And it seemed like he was giving her points for a good, snappy comeback.  And then came the steam.  The steam seemed important so I filed that away.

^^^^

Years later, I was at a mom's group of some sort and a woman was talking about how her son kept getting croup even though they were supposed to stop getting it after about age five.  I hadn't known that, but I thought it was interesting.  Anyway, the whole experience sounded pretty miserable, and I was glad we had avoided it.

^^^^

About a year after that, we were at birthday party at a public park.  Paul and Max found a windchime hanging in a tree.  Twice a year a local group hangs the windchimes all over the city for people to find.  The group was started by the parents of a three year old boy who died.  Of croup. 

^^^^

Because of that, I ended up doing more research into croup (viral infection of larynx/trachea, can cause pronounced swelling of the airway, gets worse at night and frequently you end up in the ER getting steroids or epinephrine to reduce the airway swelling).  But by the age of about five or six the tissue is more mature and croup ends up just being a cold.  We had avoided the whole experience with Max and Julia had been pretty healthy since we had the ear tubes in last year.  If you ignore the broken leg, I mean. 

A couple of weeks ago we got a notice from her school that strep was going around.  Julia got a bit snuffly and I was just watching her.  You know when your kids are kind of like a ticking time bomb?  Either it's going to be a dud and it will pass quietly or it's going to explode in a mess of fevers and snot and you pretty much have to just wait it out to see what happens.  Eventually, Julia finally woke up with a bad cough and a sore throat.  I got her in to see the new pediatrician at our office.  I would have waited, but I thought it was strep. 

And no, it wasn't strep, she was pretty sure it was going to end up being croup based on how her larynx looked.  And then she tried to give her a flu vaccine, while she was sick, and since I think this new doctor is going to be the replacement for when my doctor retires, I'm now shopping pediatricians. 

The bad night came on Friday.  I don't know how to explain what stridor sounds like, but I could hear her struggling to get air into her chest (her chest, thankfully, was clear, and her color was good).  She was coughing so hard she was vomiting, which made her cry harder which made the whole thing worse. 

I took her into the bathroom and told her we'd stay in the steamy room until her throat cleared.  Or until I lost 20 pounds. 

She didn't get it, but she settled down, and her breathing calmed, and I relaxed enough to know that a day will come when we'll watch the movie together and she will finally get it.  Once she fell asleep, I lined up my shoes, wallet, keys, and phone just in case and then went to watch her breathe.  But by the next morning she was better. 

And good thing.  For a cat and a rattlesnake needed an adventure tonight.

The Meeting and The Meeting after The Meeting

First, a couple of housekeeping points:

1. I'm going to start calling Max's teacher The Teacher.  I came up with Mrs. Carrow in a moment of unkindness (for anyone who missed the reference, the Carrows are from the later Harry Potter books, they come into the school after Snape becomes headmaster to handle discipline through torture).  I came up with the moniker in a moment of anger and quite possibly after a glass of wine and it wasn't sitting well with me. 

2. Here is the major take home message from the meetings, and what I don't want lost, whether anyone agrees or disagrees with the choices we are making for Max.

We are extremely fortunate to have so many people in our school who care so much for our son.  For his education and for his well-being and for who he is as a person.  Every person came into that meeting focused on his best interests.  And that includes The Teacher. 

The Meeting

In the meeting were the special ed teacher (the woman I had contacted), the speech therapist whom Max had worked with last year, the school psychiatrist, The Teacher, and me.  Everyone had varying levels of information about Max's background so we started with me giving an extremely brief run through of birth to now, touching mostly on what I considered to be the major points - Max's tendency to be very adult-centric and rigid with rules.  We discussed the behaviors of concern at home and I learned about a few things that were going on in the classroom.  I was a little less than thrilled this was the first I was hearing of that. 

Since the most pressing issue in the classroom is the shirt-chewing we talked a lot about that and ways of helping him with that behavior.  An idea - giving him a 'fidgit' object- was presented, with some resistance from The Teacher since she didn't want to hand out twenty objects.  In the end she agreed along with some pointers for handling the other kids when they asked about it.  She was also asked to start making a note of what was happening in the classroom when Max was chewing on his shirt so we could eventually address the problem.  And small update: Two days in, we've gone from Max coming home with the entire front of his shirt drenched to a slight chew pattern on his collar. 

We went through other sources of stress for Max and how we might help.  Max dislikes writing and there's a lot of it this year, but The Teacher was not enthused at this time with J.'s suggestion of letting him keyboard some of his work.  She is agreeable to relaxing some of her standards with him right now, which was fine with me; I continue to work with him on spelling and grammar at home, but when I know he's getting tired I let him work on content instead.  Homework, overall, is not a source of stress.  He enjoys it. 

We talked a lot about the crying at drop off.  What I hadn't known is that Max had cried in the classroom, too, claiming to miss either me or his hamster.  The Teacher, to her credit, had handled the situations in the classroom well, although I wish I had been informed.  This, though, was the hardest part for me.  Sitting in front of this room full of people and having to explain to them with the limitations of the way Max's brain functions, he's giving an excuse.  He's not missing me because he's never had an issue separating from me.  Or he was being very literal.  He misses me exactly as much as he misses the hamster.  I don't even like to think about it because it breaks my heart.  It's not really something I wanted to explain.  

We haven't come up with a clear plan for the morning yet.  The Teacher offered to let him come into her room and do some busy work in there and he might take her up on that.  I'd rather he were on the playground so I'm still pushing him towards approaching friends out there.  We may try to find a middle ground.  In the meantime, however, I had been working on not being so grabby with the other kids and I have discovered that six year old boys are a forgiving lot.  One boy who kept brushing him off two weeks ago is now his "BFF."  As the kids say, apparently. 

In the end, we came up with: the fidget, multiple check-ins (from the psychiatrist and the special ed teacher), an offer to join a social skills group with the speech teacher which Max has decided he'd like to do.  I'm volunteering more; my plan is to be with his class about once a week or so.  We'll regroup in a few weeks. 

As far as The Teacher goes, her response to the meeting, I felt, was generally positive.  She was upset ("devastated" was the word the special ed teacher used when she was first informed of all of this) by Max's regression and she did immediately assume that she probably had something to do with it.  She apologized profusely.  She asked what she had done, what she could do differently. 

I didn't answer her directly. 

I did not absolve her. 

I did point out what I had seen when I was in working with the class that one morning, though, and how I thought some of what happened might have affected Max.  She had changed some things since I was last in, but really it was just more punishment-type behavior, and I didn't see it being helpful (to Max, anyway, I know it's just going to cause him more stress).  I desperately wanted to talk to the special ed teacher alone at this point, but I didn't see how I could make that happend and we'd already gone twice over the allotted time. 

The Meeting after The Meeting

J. met Max out in line the next morning.  Kind of to check on Max.  Also, she knew there was more and I think she wanted to give me the opportunity to finish.  So I told her the rest.  I told her what comes out when we aren't questioning Max, when he doesn't realize what he's actually telling us.  About book corners and lines.  About how once Max realizes we're paying a lot of attention to what he's saying he shuts down. 

To be honest, she didn't seem that surprised.  She's planning on spending more time in the room, working on positive reinforcement.  She also thinks Max being singled out for more attention (from The Teacher and from the various other professionals in the school) will help. 

I explained that I couldn't say that in The Meeting because I didn't want to be an unwelcome presence in the classroom.  It's still so early in the year and I think Max is going to need me in there.  She understood, although it wasn't her impression that The Teacher would likely hold a grudge.  I wasn't sure and I wasn't willing to take the risk right now. 

And I did say I thought she was an excellent teacher, because she is.  And Max really loves her, and she seems to like Max a lot. 

Well, she said, you can't help but love Max.

 

 

 

Things are moving along

The day after I sent the email, I received a phone call from Max's previous IEP lead.  We discussed my concerns and I made clear from where I thought the problem stemmed.  And though I would certainly hope I know my kid best, she agreed with my assessment of his behavior at school: he aims to please the adults in his life and a bunch of really rigid rules are going to stress him out. 

I had kept Max home from school that day; Julia was running a fever and when Max asked to stay home, too, I relented.  We had a perfectly pleasant day playing on the floor together until it was time to get pizza.  It was good for all three of us. 

The lead (I'll call her J, just for the sake of calling her something) did tell me that she had checked in with Mrs. Carrow, who apparently HAD noticed at least some of the time that Max was crying in the mornings.  That, then, pissed me off.  We're six weeks, not six days, into the school year, and if a child is crying, wouldn't it make sense to ask the parent she sees every day about it, either to make me aware or ask if something's going on at home?  Argh.  Momclaws. 

So.  We scheduled a meeting.  J, me, the school psychiatrist, Mrs. Carrow, +/- the principal.  The event is to take place tomorrow and we will develop a plan.  Before Max's preschool teacher ripped my soul to shreds she did point out there are going to be stressful teachers in Max's life, so he will need to learn coping strategies.  Hopefully, tomorrow, we will discover those together.  And I will keep the momclaws sheathed. 

Bounce

I think, for me, the advantage of having more than one child is that just when I'm feeling really stressed about an issue with one of them, like Julia's school placement for next year, a problem with the other one comes along and smacks me in the forehead, thus completely distracting me from the first problem. 

I was feeling kind of unhappy about Max's situation but more or less settled with the plan.  I mean, I still don't really like the woman, but I felt I was doing what I could.  Max was not exhibiting any behavior problems at school and the issues at home seemed to be mostly neurotypical kid stuff.  Tantrumy stuff.  I was even kind of relieved.  Other people's kids have tantrums.  So does mine now.  Some extra understanding.  Some extra time off.  This too shall pass. 

And then I came early one afternoon to pick up Max.  He had chewed up the entire front of his shirt.  The next day, the same thing.  His teacher even said something, which I thought was a little odd.  If a kid, who had never done that before, suddenly started going goat on you, don't you think you might, I don't know, wonder what was up? 

So it's about a week later, and every day Max cries at drop off.  And by pick up he has chewed his shirt up.  And he's started stimming, a behavior we usually only saw now at extreme stress (i.e. travel, he dislikes coming out of his natural habitat).  He's having trouble with natural boundaries, as the author of the social skills book calls it, he's become a "space invader" again.  I find it annoying and frequently painful and I've seen in the mornings that some of the other kids are starting to avoid him because he's constantly grabbing at them.  I've caught him toe walking.  He's more sensitive to sound again.  And the echolalia.  Oh. My. God.  The freaking echolalia. 

It is by far the behavior that has always driven me the most insane while simultaneously making me feel the most guilty.  He does it because it takes his brain longer to process the thought or concept and I should be more patient with it.  But when I've repeated the same thing three times or when he's repeated the exact same thing back to me five times what I really want to do is scream, not make my pleasant, patient mom face. 

(By the way, this is usually where someone wants to tell me that they have a neurotypical child that repeats things, too, and it's normal and cute! and I don't know how to explain to you that this is different but it is.  I have a control subject.  Trust me.)

I went back to the preschool teachers today and asked what the protocol was for getting Max some help.  I'm not sure what the right answer is now.  And Max's former lead teacher said that this situation is why she hadn't wanted to see him dropped from his IEP.  And then she had to call the janitorial staff to mop up the pieces of my heart that she exploded all over the floor. 

I have barely - barely - come to terms with the number of times I let doctors and therapists and other parents and every random person convince me that things were fine when Max was a baby.  I first raised a flag when Max was four months old and I allowed everyone to placate my concerns until he was well past two.  I'm supposed to be his advocate, and that continued for years. 

And the person I most credit with the strides Max made from three until five just sat there and told me I completely fucked up last year when I allowed the IEP to expire. 

I don't know if I exactly had a choice in that matter.  All of his therapists agreed that his goals were met and wanted him released from the IEP.  Max didn't want to continue to be pulled out of classwork, either, and his teacher reported that he was getting really frustrated by it.  If we had tried to keep him on the IEP, it would have been Paul and I insisting on it, just in case he needed it in the future, and I'm not sure the school would have agreed in the end. 

Regardless, I took her criticism in the only way I knew how.  I came home and sobbed at my failure. 

And then I regrouped and emailed the lead therapist on Max's IEP last year, explained the behaviors we are seeing, and delicately-please-read-between-the-lines explained the problem so that she can figure out why I'm coming to her and not the teacher. 

Julia and I went to pick up Max and had a great afternoon (he had a substitute today).  And he asked for some stupid top thing (beyblades?) which are the IT thing at school and of course the correct answer is that he has to buy it himself or wait for Christmas or whatever.  But this is the first time ever that he has wanted something the other kids have been interested in.  And I understand the luxury of most parents, thrilled that their kids are independently-minded and confident enough to not follow the crowd.  But when you know your kid is destined to be the outcast any sign that he is trying to fit in, that he wants to be part of the gang, gives at least a little hope that he'll muddle his way through all of this with as little pain as possible. 

I bought him the toy.