Cautiously Optimistic

Back to school night seemed to go well.  We didn’t have any actual conversations with other parents because it was a madhouse, but they seemed friendly to us.  Today was a day off for parent conferences and G’s teacher let us know that she has had many positive reactions to our letter.  I asked if the situation with the parent who had specifically expressed concerns had been resolved.  She said yes, that the parent remarked that they understood better now that they had all the information and were able to talk with their child about how to handle things with G. 

So I’m feeling cautiously optimistic.  The end of last week and the beginning of this week have gone well for G.  His schedule has all the kinks worked out, he has a workable behavior plan and an aide to support him during recess.  An alternative recess is available for days he refuses to go to the general recess or is not allowed to go because of an earlier infraction.  His teacher seems to have developed a good relationship with G and understands better what sets him off and what calms him.   We’ve held off the potential of a parental mob and instead have taken the first steps toward understanding and acceptance.  And we’ve also taken the first steps toward talking to G about autism.

I feel like I’ve learned a lot from this experience, but it’s so jumbled right now I can’t put it into words.  I’m having some strong reactions to the latest video from Autism Speaks and from some comments on other blogs blowing off aspergers as trying to belong to a ‘cutsie’ club.  I’m angry about all of that, particularly in light of the last 3 weeks.  But I’m so exhausted from running, meeting, explaining and advocating for G, I just can’t deal with it all right now.  I admire the people that can fight for autism advocacy in a broad sense and make an impact on the national/global conversation.  But right now, I’ve got to keep my energry focused on my family.

Lots Going On

G was having enough trouble in school that a meeting to develop a Behavior Intervention Plan was called.  This isn’t the first time we’ve been through this so while I was anxious, I wasn’t as stressed as I have been at past meetings.  Overall, I was pleased with the plans they had developed and wanted us to approve.  Most of the interventions are positive, working to encourage acceptable behavior.  There are also consequences for negative behavior that seemed sensible to me.  While I understand G isn’t in complete control of his impulses, I’ve never allowed him to get away with bad behavior and wouldn’t expect the school to do so either.

Another issue is G’s classmates are asking why G gets what they perceive to be special treatment.  For example, G gets to chew gum in class after recess, after lunch or whenever the teacher thinks he needs it as a soothing technique.  There was also an incident where G had an outburst and slapped his hands on the floor in a fit of temper, but pulled himself together shortly after.  Because he didn’t hit anyone else and he didn’t continue to rocket out of control, he wasn’t penalized on the class behavior chart.  Apparently this was seen as an inequity among the other kids.  So a presentation has been planned for a time when G is out of the class to explain G to his peers.  Originially his teacher suggested that I come in and do this presentation – and I panicked.  I came home and read everything I could find and stressed about what I was going to say.  Then this idea evolved to the school psychologist giving the talk and keeping the topic to a general comparison of differences instead of slapping an autism or asperger’s label on G.  Then she’ll move onto similarities and go into what G has to offer a friendship.

I’m much more comfortable with the psychologist’s approach.  And one reason why is that we haven’t disclosed G’s diagnosis to G yet.  I intended to do that soon, but I wanted to wait until he was settled into school first.  I didn’t over the summer because I didn’t wasnt to add to his anxiety about starting school.  And when I realized we needed to really sit down and work this out, I ran into another obstacle – DH.

DH is not at all comfortable ‘outing’ G to his class.  He thinks it will cause the kids to shun him.  And he doesn’t think we should tell G that he has Asperger’s until he’s at least 10 years old because he won’t understand it until them.  I strongly disagree, but I’m only one half of the parenting team.  So I’ve had to re-do my research, making sure my sources were objective and reputable before passing it along to DH. (who doesn’t think the information gained from blog posts is valid – silly man)  I sent a very topic-neutral email to the school psychologist soliciting her professional opinion.  I asked DH to read the books for G I’ve been collecting so he could see the age-appropriateness of what I was planning.

I eventually got him to agree to the presentation to the class.  And I have an agreement on disclosure to G, but not an agreement on the exact timeframe.  Which is ok, because I don’t have a firm idea on the time.  I’m thinking in a couple of weeks, on a Friday so there are a couple days before he returns to school, I’ll slip in the chosen book for the bedtime book.  We’ll see if G clicks to the fact that the character in the story I want to use is a lot like him.  Maybe on Saturday during the day I’ll use another book, but maybe not.  I’m really just planning to introduce the concept and then see how it evolves from there.  I don’t want to make a big deal or make this a “Big Talk,” I’m aiming more for making this part of our families vocabulary so that he can grow up with it.

And you’ll notice I switched from working with and planning with DH to a whole bunch of “I plan to” statements.  I have problems with teamwork and would rather make all the decisions by myself.  Sound familiar?

Taking a Deep Breath

We’re done with the first week of school.  The first two days were incredibly stressful.  G bit a boy at recess the first day and on the second day there was some kind of conflict (again at recess) and he hit his teacher.  These were the big offenses but he had lots of incidents of hitting and kicking his classmates.  The third day got better – he got mad at his teacher but didn’t get physical and spent a bit of time in his ‘cooling off’ spot.  Thursday and Friday were both very good days with lots of cooperation!

My suspicion is that G acted out due to anxiety.  He has a hard time with new routines and we do everything we can to prepare him for big changes.  He was assigned the same teacher he had last year for math.  She assigned him the exact same desk he used last year.  We went the week before school began and met the new special ed teacher and visited his teacher so he could see his desk, cubby and coat hook.  We got his first day and regular weekly schedule and I used those to write up a schedule card for him to take every day.  (he prefers checklists to the more traditional picture schedule)  He studied it in the morning at breakfast before taking it to school.  He kept it on his desk and checked off each activity.  They didn’t have a recess aide for him this week, and I think this was an error as it is in his IEP, but I’m told this will be corrected shortly.

I’m going through my extensive Aspergers/Autism library and reading everything I can about anxiety, looking for new approaches.  One thing we brought back Wednesday morning is the brushing and buzzing therapy we used when G was 3.  His school usually runs a ‘motor morning’ program but they haven’t started that up yet, so we did a home version after breakfast.  G and DH did wall pushups, wheel barrow walking, jumping jacks and stretching.  I think that in combination with G becoming familiar with the school routine again helped to calm things down.

I guess we’ll have to wait and see how things go.  I’m finding a lot of material on anxiety, but not much on what to do when that anxiety manifests physically.  If you google ” Asperger’s and Hitting’ you find a lot of information about kids with Aspergers being bullied.  But what do you do when your kid with Asperger’s is the bully?

SmartyPants!

G’s IEP was a dream meeting.  The whole team was smiling and giggling secretively as they told us they had ‘exciting news’ to share.  We had approved a round of cognitive testing earlier in the month and started getting into the results.  They handed us a graphical representation of a bell curve and started highlighting where G fell for various categories.  99% here, 99.6% there, “90% here, but he was in an opposite mood that day,” they said apologetically.  They further apologized that they couldn’t give him the test designed for 6 year olds because they weren’t allowed to, being that he’s 5 1/2, so he never hit the ceiling.  I learned the ceiling is defined as 4 missed answers in a row, thereby ending that section of the test.

I felt like I was in an alternate reality.  We weren’t discussing aggression issues?  Opposition to teachers?  What about social skill deficits?  Problems relating to peers at an age-appropriate level?

Then they dropped the big bomb.  They recommended G skip 1st grade next year and instead advance to grade 2.  Admin approval had already been received, they only needed a decision from us.  We spent the rest of the meeting discussing the pros and cons.  G’s teachers report he has been much better behaved since they started pulling him out for classes with the 1st and 2nd graders.  Challenging his mind seems to focus his body and attitude.  He attends a 2nd grade recess after his math class and gets along well with the big kids.  He rarely gets into the same physical altercations he routinely experiences at kindergarten recess.  He’s a big kid so there’s no noticeable size difference between him and the current 2nd graders.  He might just be among the taller kids in next year’s second grade class.  Being in the 2nd grade class would provide a more stable routine, as he wouldn’t be pulled out for advanced work as often.  If he did still qualify for gifted classes, he’d go with the other gifted 2nd graders so it would be the same peer group.

I was worried about his weak social skills and brought up many questions.  But it seems that he does better among the older kids.  One theory is that they model more advanced skills for him to emulate.  They had a list of accomodations ready to go, including having aides present during unstructured times like on the playground, having extra movement breaks built into his day, and accomodations for writing assignments, as his handwriting skills are on the mid to low end of age-appropriate.

We slept on it, but decided this is too good to pass up.  Our little G will be going into second grade next year.  We better accelerate our college savings plans!

Feeling Tense

G’s having problems with defiance and behavior in school right now.  Not unexpected since he’s readjusting to school after a 2 week break.  His teacher has been staying in close communication and we’ve been discussing the issues.  Sounds great, yes?

Except I find these emails, which I requested in his IEP, really make me tense.  I feel like I should be doing something to address the issues with immediate results.  I feel the need to ‘fix the problem’ and fix it now!  I’m trying to relax and let G’s week simply happen because I think once he gets back into the routine he’ll level out.  But it is really hard.  I’m also worried about being tense and anxious and having G pick up on that, which will make a bad situation worse.  How do I handle this?  What do you do when the school contacts you with problems about your kids?

Thinking Out Loud

We got G’s official IEP in the mail recently.  Overall, I am happy with the goals and interventions.  There are just a couple references to teaching G to sustain eye contact during conversations that I’m less than thrilled with.  Just to be sure,  over dinner I spoke with G about looking in someones eyes and how it makes him feel.  I wanted to have the conversation in front of my husband so he would hear first hand and not think I was making a big deal out of a seemingly small detail.  G again affirmed that looking in peoples eyes makes him feel uncomfortable and he would rather look at someones mouth. 

I plan to mention this at our next IEP meeting in the spring.  But I’m wondering if I should mention it sooner?  It seems like a small detail but the more I think about it, the more I want to be sure they’re not forcing him to stare into people’s eyes if it is uncomfortable, and possibly hurts him.  I’m also wondering how common it is to accommodate this type of thing.  Is eye contact a necessary social skill for later life?  Is teaching him to look at a person’s mouth sufficient? 

The more I think about it the more confident I feel that having G turn and watch someone’s mouth is enough to let a speaker know G is paying attention.  People would know he isn’t looking them in the eye, but it would be close enough to acceptable to be a quirk rather than an impediment, I think.  I have trouble making eye contact myself – I look at noses and ears, particularly when I’m feeling insecure and no one has ever mentioned anything to me.

I think I’ll mention this to G’s teacher the next time I’m speaking with her, and then I’ll bring it up formally at the next regular IEP meeting.

Behavior Plans

It has been an eventful couple of weeks.  G is having substantial behavior problems in school both in getting physical with kids and by not complying with requests from his teacher.  We think illness is the trigger this time around.  Last week he had a really bad day then 2 days later he came down with a doozy of a cold that kept him out of school for a couple days.  This week, supposedly recovered from his cold, he had 2 bad days in a row and then at the end of the second day he started screaming that his ear was hurting.  Sure enough, he had an ear infection.  We kept him out of school another day to give the antibiotics time to kick in.

All of this prompted a meeting of the team to develop a behavior plan for G.  It was actually a very positive meeting, no one was looking at us like we were bad parents or that G is a bad kid.  The first thing is when he has a day where he seems to be out of control they’ll check him over and try to get him to identify any physical problems.  Then we worked toward developing strategies to encourage positive behavior like a token system to earn computer time.  He’ll also get tickets that say something like “I had a good day” to give us and we’ll reward him at home for an infraction-free day.  Negative consequences occur only in school so home becomes a clean slate and he can regroup for the next day.  Consequences include going to the principal’s office any time he hits (she’s nice, I’m very comfortable with this) and sitting out of group activities in an unstimulating way until he’s willing to participate and cooperate.  Unstimulating because  last week they had him sit out in a corner that had a large map and he occupied himself for quite awhile by identifying all the states and plotting various trips.  The map has been removed.

I googled behavior intervention plans to prepare for our meeting and wish I hadn’t.  I found all kinds of articles on seclusion rooms and abusive restraint that scared the heck out of me.  I asked what their policies on handling out of control kids are and they have a no-touching policy that I found reassuring.  I am realizing how incredibly lucky we are with our school this year.  Now if we can just get G healthy and back on track!

Good Stuff

We had G’s goal-setting IEP meeting today and it went well.  I feel very fortunate to be in such a great school system, we’ve never had to fight to get G services and interventions.  They were particularly good at highlighting his progress since the beginning of the year.  It was so refreshing to sit and listen to what he is doing well and what he is working on compared to last year where the director of his preschool stayed focused on what he was doing wrong.  His deficiencies were framed in the context of what the staff needed to change to address issues rather than faults of G’s.

We also got the formal report from his Ados evaluation.  It is an interesting feeling to see your child described on paper and quantified in graphs and charts.  I agree with everything that was written but in some parts I was surprised at the observations.  They are correct observations, but stuff I don’t notice because to me this is just our life with G. 

For example, it was noted that G does not engage in back and forth conversation.  The examiner would offer leading statement like “I have a dog,” and G showed no interest.  He only responded when asked a direct, factually based question.  We’re so used to this that I was surprised to see it noted on paper.  It is just our normal family conversation.  We ask G what he did during the day, but very specifically.  “What did you do for your first work-center today?  You colored?  What did you color?  You colored a monkey?  What color crayons did you use on the monkey?  What was the second work-center you did today?”  He never expands on his answer or asks what we did today, it is strictly an interview.  And I never noticed that as odd. 

Also interesting is according to the report, he does not display any stereotyped behaviors or restrictive interests.  He has topics he gets very animated about like baseball but while he doesn’t always notice that the other person is bored and ready to move onto another topic, he’s not obsessive about maintaining the conversation.  He’s also particularly interested in how cars work, like what all the gauges mean and the rules of driving, but once we leave the car he leaves the subject until we’re back in the car again.  I find this interesting because as I poured over the DSM-IV I kept trying to shove him into these categories by framing his interests as restrictive.  It really highlights why you need an unbiased evaluator to tell you what does and doesn’t fit into the criteria. 

It was an interesting day and a good day.  After all, talking about G is my favorite thing to do. 

Oh, one other thing.  They used the Gilliam Asperger’s Disorder Scale (GADS) to evaluate G and he scored high/probable for having Asperger’s and is similar to 45% of people diagnosed with AS.  So I’m going to start using that tag again in my posts.