Tag: raising kids with ADD

The School Chronicles: model student, picky eating (AGAIN), and possible laundry fail.

This week we had an SST meeting with Max’s teachers, counselor, and principal.  We had the SST meeting in place of a 504 meeting because Kaiser is still refusing to give Max the official testing for ADD without which the school can’t do the 504.  I can’t even remember what “SST” stands for but the school wanted to help Max with any issues he’s having now and this is one of the steps towards putting together a 5o4.  In the meeting (which Max attended) we enumerated Max’s strengths – the input for this coming from all of us including Max himself.  Then I gave them some background information about the challenges he’s had in previous school years.  We listed his current challenges and came up with some mild modifications.

The surprising thing is that the things the teachers had to say about Max made me feel ridiculous for having pushed for help in the first place.  The school files for his last two years are bulging with behavioral issues, problems with other kids, trips to the principal’s office, and all his teachers had to make many significant modifications to keep him on track and in their classrooms.

I still remember the day two years ago when Max’s fifth grade teacher called me on the phone and said “I’m very scared for Max to go to middle school” and had me meet with her, the principal, and a couple of other teachers who had complaints about Max even though he wasn’t in their classrooms.  Mrs. Mika basically said she couldn’t do any more for Max and that in order for her to be able to teach the other kids – he had to spend time in the principal’s office and the special ed room so he couldn’t disrupt the class any more.

I broke down crying.  What do you do when a room full of people are saying your kid is too much for them to handle?  That was a bad day.  I am only bringing this up now for contrast.

Yesterday’s meeting was nothing like that.  Max’s science teacher called him a model student.  Wait – WHAT?!  Apparently he’s had a challenging lab partner and dealt with the situation really well.  My kid handled a challenging situation with another student without complaining loudly or making the situation worse?  Hearing these things obviously made me feel really good.  I wasn’t expecting that.  His teachers all seemed to more or less agree that Max is organized.  WHAT?  I asked incredulously if they had actually looked at the state of his binders.  They had.  They didn’t see the chaos I thought I saw.  But then, every night I see his binders and books sprawling across the floor and papers drifting around the room like scholastic tumbleweed.  Also – he writes on the backs of the pages instead of the front.  But that isn’t the important factor.  They said he can always find what he needs for class and that’s what’s important.

They all commented on his articulateness.  I attribute this largely to his early obsession with Tin Tin.  Those comics use an impressive vocabulary and are intelligently written.  My mom attributes his articulateness to having such articulate parents.  I suppose it’s a combination of factors.  It usually is.  They all agreed that he is good at advocating for himself in class – expressing his needs.  That he is never afraid to ask for help when he needs it or doesn’t understand something.

What it boils down to is that he’s doing really well at the moment and we really only needed to address the homework situation.  Max has had some really tough nights trying to get his homework done, getting overwhelmed, and then slipping into that negative spiral where he basically hates the whole world and everything is doomed and he’s just going to give up.  I know he needs to keep doing homework but those tough nights take a toll on his over-all attitude about school and homework.  So his teachers have agreed to a case by case modification: when these tough nights occur – Max should just close his books and be done.  If he’s put in some effort and is getting really frustrated – he can shut down.  The next day he will tell his teachers he finished all he could of the homework and they will give him full credit.  What this does is gives me the freedom as his parent to call it a night and know that his grade won’t plummet because we’re managing his mental and emotional health.

Another thing that may be making a difference for him is that he changed his elective from art (which he wasn’t enjoying) to drama and to do this meant a change of his class schedule resulting in his PE class being second period instead of first – so he’s got a new teacher for that (he was butting heads with the student teacher of the other class) and his math class is now first period which I think is better than him having it last period.

So what’s happened to make such a great change in Max’s attitude, behavior, and performance in school this year compared to the last two years?  Going from elementary to middle school is generally considered to be a huge step for most kids and for kids like Max – especially stressful.  For years I’ve heard teachers and parents talk about middle school with a kind of tense caution – like it will either destroy or make your child.  (Just the kind of talk people with anxiety really like to chew on).  Obviously I have feared this change because Max’s teachers have feared it for him.  Yet he hasn’t done this well without lots of modifications from his teachers – EVER.  So what is it?  This is what I think:

Bigger school:

There were less than 60 kids at Ballston Community School.  Max spent all day long with the same small group of students.  He had different teachers for different subjects but the same class.  This meant that if he had issues with a particular student (which he did) they would be in each other’s faces all day long.  At his middle school there are 600 students.  With each class he is with a different group of kids.  So there’s a lot less opportunity for him to become so irritated that he blows his top.

One Grade Classrooms and Two Grade School:

Elementary school includes 6 grades – that’s a wide age range of kids on the playground.  Max’s charter school was K-12 and his classes were multi-grade (6, 7, and 8 sharing one class) and because there were high schoolers there the age range of kids was from 5 to 17 or 18.    Max had a lot of trouble with the high school kids and he has little patience for young kids – so I think being in a school where there are only two grades and no older teenagers or little kids has been beneficial for him in terms of interaction with other students.  Everyone there is more or less a peer – for him this is a good thing.


I think the more rigid structure is working for him.  Now that he’s in a flow with it and knows what’s expected of him he seems to be able to keep track of his responsibilities as a student better.

Being Five Feet Tall:

He grew 1/2″ in September alone which finally got him just above the 5′ tall mark.  Surely being the size of a small grown up increases one’s ability to deal with things more maturely?  Okay – fine – I think what’s really happening is that he’s maturing, as kids do, as he’s getting older.  He’s going to be 12 years old in a month.  All the positive change we’re seeing in him has got to be at least partly attributable to the natural process of maturing.

Another interesting thing is that it’s looking like Max’s OCD issues are the ones causing the most challenges right now.  Last year it seemed to be predominantly the challenges brought on by the ADD that were making things so unmanageable.  I was convinced it was time to medicate him for the ADD.  Now there’s a shimmer of hope that he might not need it.  We’ll have to wait and see.

There were two things that came up at the meeting that were irritating.  Well, one was irritating and the other was both surprising and WEIRD.  The principal of the school brought up her concern for Max’s diet.  Sigh.  How many times am I going to have to have this conversation and feel shamed and know that others continually make the assumption that if my kid has a poor diet it’s because I’m either a weak-ass mom who is letting her kid do whatever he wants or that I don’t actually know what a healthy diet is and think I only eat cheese puffs too.  When the principal mentioned how unhealthy cheese puffs are Max piped up to explain that the ones he eats are the natural ones and you should have seen the look on her face as she said “Cheese puffs are just bad for you.”  I have to work harder and harder to be patient with people initiating these conversations about his diet.  THEY DON’T GET IT.  And I’m tired of having to defend both me and Max and explain what we’ve tried and what doesn’t work and how long this has been an issue and a battle and a thorn in my fucking eyeballs.

We’re doing the best we can.  I’m tired of people making me feel shamed.

The other thing was just weird.  Apparently some teachers at the school have expressed concern about Max’s clothes.  Specifically – they have seen him come to school wearing the same clothes for a few days in a row.  I’m not sure if any of those teachers were in that room with us (none admitted to being the teachers expressing this concern).  I could not have been more surprised and weirded out that anyone would EVER think my kid wears the same clothes days in a row.  I may go out in public wearing tomato on my shirt or dirt on my pants because I’m a slob but the thought of putting on dirty clothes after taking them off at the end of the day to wear again is ANATHEMA to me.  For myself, for my spouse, and for my kid.  We are people who wear fresh clothes.  I never imagined I would have to assure a group of school personnel that I give my son fresh underwear, socks, pants, and shirts every single day.  EVERY SINGLE DAY.  I asked if Max looked dirty or was smelling or something?  Because I couldn’t fathom how anyone could form the opinion that he was wearing the same clothes day after day.

And then I realized how they could form such an opinion – he only wears black sweat pants.  Every day.  They look the same.  But he has something like 10 pairs of them.  All identical except for some being slightly more faded than others and now one has a hole in the knee.  And he also has three black and grey striped shirts that look identical (they aren’t actually – having different details) but he sometimes wears those shirts one after the other on consecutive days.  His socks are always black.  He always wears a black hoodie.  So to the uniformed or undiscerning eye he may very well appear to be wearing the same clothes days in a row.

It’s still weirding me out.  It makes me feel icky.  I must appear like a real trashy negligent mom for them to question me about his diet and changes of clothing.  I’m not holding it against them – what do they know about me?  What are they supposed to think?  I’m an obese person whose son eats nothing but cheese puffs at school and who wears very similar outfits every day.  They are looking out for the welfare of children and if I was a teacher I would do the same.  And they can’t know anything about me or our situation unless they ask the questions, however awkward it might seem.

Oh, and all the teachers wanted to know what was up with the bloody noses.  God, I hope they haven’t been wondering if he has a coke habit or if we’ve been punching him in the nose every night making it sensitive?

I’m going to stop focusing on the weirdness now and focus on all the good – the many many reasons I have to be proud of my kid right now.  His really good attitude about school in general (PE excepted) and his willingness to work on issues, his general lack of complaining about homework (because those tough nights are not the majority and when he’s not overwhelmed he’s had a good attitude), and how he hasn’t been acting out.  I’m proud of how he suddenly accepted having weekly chores when we moved down here where before it was so much work getting him to do chores and keeping him on track that I would just give up.  Now he does them without fuss and though he’ll do a crappy job if you aren’t there to coach him and keep him on track – he doesn’t resist when you say ” hey – you still have things to pick up in here”.

The last thing I want to report is that in joining the drama class he is now doing extra-curricular activities and though I don’t know if drama will continue to interest him as the year goes on (I have some hopes here) he’s enjoying it right now.  Last night he did his first ever drama performance at school after school hours – he came home after school for an hour and a half and then was expected to return to set up their scenes and then he had to be part of the haunted hallway show until 8pm.  Then he had to come home after having spent a total of 9 1/2 hours at school and DO HOMEWORK.  I let him stay up a little later so he could do it.  He not only said he really enjoyed doing the haunted house (and his teacher complimented him on his performance) but he didn’t complain about having to do homework.  He crawled into bed at 10:30 and instead of staying up an hour to read (because he doesn’t get to sleep easily, even with melatonin) as he usually does – he was out like a light.  Amazing.

Bottom line for me right now is that I’m really happy with Max’s school, his teachers, his counselor, and even though the principal thinks I’m an obese junk food eating parent -her work as principal seems to be good and I appreciated that she attended the meeting with us.  This school is so much more organized than the last one and it makes a huge difference.

Now, if only Kaiser would stop chewing on its own tail and do what it should be doing to ensure the best care for its patients – we could really be moving forward.

The Frustration of Having an Invisible Illness

I think the hardest part of parenting a special needs kid is negotiating between him and the rest of the world.  Which mostly means between him and whatever school he’s going to and whoever he is tangling with or having trouble with or pissing off or frustrating or wearing down.  I sometimes wonder if it would all be easier if his issues were visible.  Like if his anxiety manifested itself in more obvious ways such as hiding under tables all day or if his issues were physical, like if he was in a wheelchair.  Mental disorders and illnesses that don’t present themselves in any physical way are invisible except in the form of behaviors and it’s very difficult to be patient with someone who has impulse control issues who lashes out at you verbally who looks 100% bona-fide normal.  The constant urge is to have normal expectations of that person.  Which means you won’t take that shit from them and you lash back and punish and consequently make a tough situation untenable because you are NOT dealing with an averagely functioning brain and nervous system.

In spite of the fact that Max is going to a school supposedly super experienced and prepared to educate kids like him, they seem to be having plenty of problems with him and him with them.  It’s been MUCH better at this school than at the last one but I’m surprised at how often the teachers behave almost as stubbornly as Max himself does.  I’m surprised how often their way of dealing with him is obviously the worst way to deal with him.  Flexibility is absolutely key with getting the best out of Max (and I would have thought ANY child, but adults love to be rigid and with most kids I suppose it’s relatively effective).  Giving Max choices in every possible situation works much better than simply laying down the law and telling him he will obey.

That’s like waving your red cape dramatically in front of an agitated bull.

I’m frustrated and tired of it always being such an uphill climb negotiating between Max and the world.  Here at home things are pretty simple.  I know how to navigate the difficult moments and smooth over the frustrations we all have.  I know how to end a tough day on a good note.  I know how to reward Max for his awesomeness and talk to him calmly about his less than stellar behaviors.  I know how to avoid giving him the chance to dig his stubborn feet in over things.  Flexibility is king.  That’s also the main reason I’m still happily married after 19 years – flexibility is everything.

Last week Max had to watch “The Boy in the Striped Pajamas” in school and it was horribly disturbing to him.  It made his stomach upset (his anxiety messes with his stomach just as it does with mine) and he came home early. He was depressed and also full of rage that he had to sit through a movie and then see the main character die.  It didn’t help that that same morning he heard a horrible story from another student about how his two cats were killed, one of them dismembered.  It was a bad day.  Anyway, I was shocked that such a movie (one that I myself had determined not to watch) was shown to sixth graders.  I did the only thing I could think of, I emailed the teacher and told her how disturbed by it Max was and asked her to tell me, in future, what films she’s planning to show the kids so I could either prepare him for them or excuse him from watching them.

This riled the teacher up.  She let me know that no one else had complained about the movie being disturbing and that it was absolutely appropriate for the curriculum of sixth graders.  Basically, she let me know that we’re precious fragile people who aren’t normal and everyone else is perfectly okay watching a movie about a kid who dies in a concentration camp.  YES, I KNOW THIS ALREADY.  I explained that I wasn’t criticizing her for her choices but merely saying they weren’t appropriate for MY KID.  (I should not have let her know I was surprised she let kids watch a movie I thought would be too disturbing for myself, that was a tactical error for which I was instantly sorry).

She let me know that they were going to be watching “Grave of the Fireflies” next.  A friend had already warned me about this one suggesting that if Max found “The Boy in the Striped Pajamas” disturbing he should definitely not watch “Grave of the Fireflies”, a gorgeously animated film about two kids who die in Hiroshima.  The story starts with the death of one of them and is told by the ghost of the other.   I talked to several adults about this film and one of them was very surprised that a teacher would show this movie to children.  So I told the teacher that I didn’t want Max to watch this film after what happened with the last one.   I told her I would let Max decide for himself  on the condition that if I excused him from watching the teacher’s choice we would have to either do some reading about the bombing of Hiroshima at home or we’d have to watch a documentary.  Max chose to learn about that horrible event in the comfort of his own home with people he feels safe with.

We chose to watch the BBC documentary about the bombing of Hiroshima.  It’s a disturbing event in history no matter how it’s being told, but in documentary form there is a purpose of informing without the emotional manipulation of a movie.  What’s best is that the horrors we learned about were largely told by survivors.  Instead of hearing a story told by dead children it was told by old people who lived through it.  People who did not die in it.  That made a huge difference for us.

Yesterday morning was the morning his class was going to watch “Grave of the Fireflies” and I got a call from Max’s teacher.  She was angry at Max and at me.  Apparently it wasn’t enough that I told her in email that I didn’t want Max to watch that film but I would leave it up to him.  She expected a follow up official email excusing him from watching it.  I actually did send a hand written note with Max to school for this very purpose but Max forgot he had it.  So when he told the teacher he had permission from his mom not to watch the film, she said she hadn’t gotten an email from me excusing him so he’d have to watch.  Obviously he argued with her and made a scene because Max knew he had my permission, he KNEW he was right and dug his heels in.  The teacher getting mad apparently made him more belligerent.  This is typical of Max.  So the teacher called me to verify that he was excused, but not until she was mad and he was mad and everyone was mad.

How does this happen?  I made it very clear that I didn’t want him seeing the film.  With or without an official email excusing him I had already made my wishes VERY CLEAR.  Clear enough that she was not happy with me for questioning her choices in films.  And if she just happened to forget my very clear wishes, and didn’t believe Max either, why the hell did she not call me immediately?  Why did she wait until Max made a scene to call me?  The minute Max claimed he had my permission to skip the film and she claimed he didn’t is the minute she should have had the administrative assistant call me for verification of permission.

So now she’s mad at me because I sent an actual note and put the responsibility for remembering it on my child (she made a good point, that was another tactical error of mine) and apparently Max refusing to see the film made the other students want to know how come he got to get out of seeing the film and they all still had to see it?  She implied that I had created a lot of problems for her.  How hard can it be to explain to the other kids that Max parents don’t want him watching the film but their parents don’t mind if they do?

Would the teacher have been so put out if I had excused Max from those movies for religious reasons?  Or if his anxiety was more tangibly visible would she have felt so annoyed at me trying to protect him from more than he can handle?

If he spent most of his day hiding under tables I think she wouldn’t have felt defensive about my intervention.

My kid is academically gifted (when he applies himself, of course) but he’s  prone to depression and anxiety in a serious way.  Disturbing images and stories stick with him a lot longer and worry him and chew at his equilibrium, throwing it off-kilter.  He’s not a typical kid no matter how much he looks like one and mostly acts like one.  I feel like I have to spend an inordinate amount of time reminding people who should know better that he is a special needs kid and that means that he doesn’t always react to things the way other kids can be expected to and that if you are rigid he will be more rigid than you in response.

I don’t regret having spoken up about Max being disturbed by the film in school.  It’s unfortunate that it ruffled his teacher’s feathers but Philip and I are Max’s primary advocates and I take that role seriously.

It is through tough big decisions and a million seemingly insignificant ones Philip and I have made that have allowed Max to be the self confident kid he is right now.  The irony is that the better we do our job protecting our kid and treating his issues the more invisible those issues are to other people causing them to have unrealistic expectations of him.

When you have no legs there are tons of prosthetics to meet different missing leg scenarios.  Doctors fit your prosthetics to your body, they mold them just for you or they find the ones that work best.  Then when you have yourself fitted up no one asks you to run in a marathon.  If you do run in one you will be celebrated and held up as a hero for doing it but no one expects a person with prosthetic legs to run marathons.

Why do people expect those of us with brain disorders to just get over ourselves and be normal?  And why is it that when we are fitted with mental prosthetics (aka medications) we are judged as weak for not being able to function well without them?

How many people look at a person with prosthetic legs and think how weak they must be and ask how come they don’t just learn to crawl on their stumps and get over themselves?

Zero.  That’s how many.