Holiday Celebrations

Yesterday was the last day of school before the holiday break.  On the schedule were 3 hours of regular class time, then a holiday party and then the remainder of the afternoon the kids watched a movie.  In years past, we’ve kept G home on days like this, preferring to start our holiday break a day early rather than subjecting him to the confusion of not following the expected routine.  This year, G has shown signs of being able to roll with changes a bit better and has a teacher that thrives on consistency almost as much as G.  They’re a really good fit, and after discussing the day and G’s history of behavior with her we decided to send G to school to see how it would go.

G’s teacher (who I simply adore) did a couple of extra things to help G with the day.  G has a bit of a crush and will often specifically ask to wear a green shirt to school, because green is Ms B’s favorite color.  Ms B in return will point out when she is wearing a red shirt, which is G’s favorite color.  G has a green striped shirt he particularly likes to wear because it is just like a striped sweater Ms B owns.  So during the week, G and Ms B made plans to both wear their green striped clothing on Friday as a holiday treat.  When he arrived Friday morning, Ms B made a production of showing the other kids how she and G dressed alike.  G stood up and did a Price-Is-Right-Showgirl imitation, waving his hands at his shirt and then at Ms B’s sweater.  It was incredibly cute and included G in the festivities right from the start.

I’ve mentioned in the past that G has trouble watching movies that are age-appropriate, preferring to stick to the Wiggles, Dora the Explorer and Blues Clues.   For movie time, Ms B selected Charlie Brown’s Christmas, which is relatively suspense free, and asked G if he owned it.  When she found out he did, she asked him to bring in the movie for the class to watch.  Such a simple thing made G feel so included and really helped him get through the movie.  (the scenes where the kids make fun of Charlie Brown’s tree are hard for G to watch)

The day went really well.  G rolled with the schedule changes and had no behavioral outbursts, which is simply amazing to me.  I was expecting at the very least that he’d hit once out of frustration but he was very cheerful throughout the day.  His attitude changed the very second he got in the car and the rest of our day was challenging, to say the least.  But even that is a positive step.  ‘They’ say that kids with Aspergers often hold it together in school and then let it rip when they get home where they feel safe.  That has never been our experience.  G is more of an in-the-moment type of kid with little self-control.  But yesterday, he dealt with an incredibly frustrating day with much grace and then let his frustration out on us.  I still struggle with the public embarrassment of his behavior and would deal with his behavior myself any time rather than get reports from the principal.

I’m feeling the warmth and good cheer of the season.  If only I could maintain this feeling for the next 18 days, until school starts again.

Pretty Good Week

Last week was a pretty good one.  First, it seems the parents of the girl G touched accepted our apology.  DH said he was outside the classroom when the mom approached him.  He was shocked and had a bit of a brain freeze so he wasn’t able to provide me with much detail on the conversation.  But he did say the mom spoke with the principal, who apparently reassured her we work very hard with G, and apologized for not being ready to hear our apology initially.  That’s all I really know, but it does make me feel somewhat better that the principal is able to tell other parents how much effort we put into helping and supporting G.  Still, I wish the entire incident had never happened and we’ve been drilling G on appropriate touching rules ever since it happened.

Second, we had parent/teacher conferences last week and G is doing awesome in 2nd grade!  He’s still way ahead in math and spelling, did great on the maps and geography unit they did and scored great on reading sight words.  I thought he would still have some reading comprehension issues but scored very well there too.  He needs some prompting to start retelling  a story the way they’d like, but really very well, all things considered.  It’s really a relief that we can put all academic issues aside and focus on behavioral and organizational issues.

Finally, G’s teacher uses a traffic light behavior system and G is usually on Red one day per week.  But last week, he didn’t hit red once!  He was on yellow twice, but right now yellow is acceptable.  So we took G out to dinner to celebrate.  Not a bad week!

Ok, Ok, I’m Thankful!

I’ve been quiet because the last couple weeks have been rough.  Without going into too much detail, there was an incident at school where G inappropriately touched a female classmate.  Not it a sexual way, more in a typical-for-G poking way, but still not good.  The other parents are understandably upset.  The school psychologist spoke extensively to G and DH and I went back to basics with regard to discussing private areas and personal space and *think* we have it handled so there won’t be a repeat occurence.

DH apologized to the other parents, although they were not exactly receptive to our apology.  We live in a very small town so we’ll see them often which makes this situation more difficult.  And for the last 10 days I’ve been having a hard time getting past my feelings of shame and mortification.  I’m not proud of this, but I spent a fair amount of time wallowing in self-pity and feeling depressed.

Then the other night, I had the absolute worst dream.  I dreamt DH and G were in a car crash and died.  It was one of those incredibly realistic dreams where I woke up with tears in my eyes and a feeling of overwhelming panic.  I had to check that everyone was safe in their beds and even after that it still took quite some time for me to fall asleep. 

Essentially, my psyche kicked my ass and told me to get over myself.  Since having that awful dream I’ve found it much easier to feel positive and keep my eye on our family blessings instead of obsessing on our family challenges.  You can be sure I spent time yesterday being thankful for my family, especially my wonderful G.

Separate – Better Than Equal?

Even with an aide accompanying him on the playground, recess was still a difficult time for G.  He continued to be overwhelmed and lashed out physically at kids on the playground.  So the decision was made to pull him from the general population during recess and instead have him on the other side of the school for an alternative recess.  I was sick about this.  But my general attitude is to always give things a try before making a final decision, and I firmly believe the school is doing their best for G, so I decided to let them try it.

And it is working out beyond my expectations.  G gets to choose two kids from class to attend his recess with him.  The kids are super excited to be chosen because they get to do all kinds of activities that aren’t allowed during the general recess because there are too many kids to manage them.  For example, it’s snowing here and they’ve set up a sledding run down the hill on G’s recess spot.  They don’t get to sled on the other side of the building because it would be too chaotic.  They build snowmen, draw with sidewalk chalk on nice days, and play 4 square without having to wait in line for their turn like they do on the other side.  G is easily able to handle the social requirements of 2 kids in a quiet spot and the aide is much better able to facilitate when needed because she’s able to focus.  Without prompting, G chooses two different kids each day which means he’s getting to know all his classmates.  And his teacher reports that the chosen classmates usually choose to sit with G during lunch.  Before this, G tended to sit by himself.

Despite all my reservations, this is working out well.  Because he is making friends and feeling more comfortable with his classmates, his anxiety is decreasing .  Which means his behavior has vastly improved.  Sometimes I get so focused on the goal of inclusion and acceptance by other people that I forget to take a hard look at what is best for G.  I have a tendency to want to force him into a situation that he may not be ready for.  I have to remind myself that right now, keeping his desk separate from the other kids in the class is best.  And right now, a separate recess appears to be the key to peer acceptance.

Pencil’s Are Obsolete

G has a recurring problem with behavior and defiance during spelling/handwriting time in school.  He refuses to do his daily spelling worksheet, gets angry, throws things and gets physical with the teacher.  We discussed the inappropriateness of this behavior daily and were starting to get through to him.  So instead of lashing out he started running away – out of the classroom and out of the building.  Luckily, there is a phone in every classroom so his teacher has been able to call the office and get someone to intercept him. 

Whenever I tell someone this story the first question is, “Do you think second grade is too much for him and he should go back to first?”  I cannot tell you how enraging this is.  I feel like the person is questioning my judgement as a parent.  And I’ll admit this is because deep down I am very insecure about our decision to jump him. 

The problem G has with spelling isn’t the content of the academic work.  Of the 100 words all second graders are expected to know without error by the end of the year, G knows 97 of them now.  His teacher has a great program where each child gets a weekly spelling worksheet with 8 words chosen for the individual child.  G is already working off an accelerated list and is doing well with learning to spell them.  The problem is with the writing.  While his mind is in the 2nd-3rd grade level, his handwriting is still in the moderate kindergarten range.  We try to work writing in everywhere we can and he simply refuses to cooperate.  With great effort, I can usually get him to comply at home but in school he’s taken it to extreme levels.

I’ve been very worried that we pushed him too hard when we decided to skip first grade and have been wondering if we should pull him back.  I’ve been going over and over our decision making criteria and each time I reach the same conclusion, that 2nd grade is the best fit for him.  Then he throws another tantrum and I start the cycle all over again.

I went to pick G up from school yesterday and found the Sped teacher waiting for me outside his classrooom.  These impromptu conferences are a mixed bag, sometimes good and sometimes bad, so I started feeling adrenaline rush through me.  This one turned out to be one of the good ones.   She wanted to float the idea of taking G to the resource room for spelling/writing to work with him individually but needed my approval.  She also discussed using that time to teach G keyboarding skills.  If he can pick up typing, then he can get an alphasmart assigned to him and can use it in the classroom to type out his work instead of writing it.  She also reassured me that we had made the right decision to jump G to 2nd grade.  His intellect is too advanced to sit in a 1st grade classroom without becoming bored.  Boredom causes behavior issues and they would have ended up pulling him out of the class for accelerated work, he’d miss social opportunities with his home class, which would cause more behavior issues.  Basically, they believe behavior problems are unavoidable at this point and would rather work them out in the proper academic setting for G.  I’m breathing a bit easier.

I spoke with a teacher friend of mine later that day and she said she’d had students in the past with this kind of  writing accommodation and it always worked out well.  When I asked if we weren’t giving up on teaching him to write too soon, she said the writing will come easier if we don’t try to force it.  That makes a lot of sense to me – I’ve always found that letting skills evolve with little nudges was more effective with G than trying to force it.  I just didn’t think we had the luxury of that in this situation.  I am so pleased that there may be an answer to this issue and that the school proposed the accommodation.  I’m really impressed with their desire to meet kids at their individual level rather than trying to press them into the mold of a model student.

Now we just need to teach him to type!!

The 12 Steps and Autism

My family doesn’t just deal with autism on a daily basis.  We also deal with alcoholism.  So for the last couple years, I’ve been attending Al-anon and ACOA (adult children of alcoholics) meetings.  I first sat in the rooms about a month or two after autism was floated as a possibility for G’s difficulties in preschool.  My husband had also been in recovery for a month or two (come to think of it, I wonder if autism may have contributed to his recovery – thoughts for another day…)  I was full of anger and resentment.  All through my life, I was the ‘good girl’ who never broke a rule or stepped out of line.  And now my life was completely out of control and I was incredibly pissed off about it.  It took me quite awhile, but the first three steps slowly started sinking in.

I admitted I was powerless over alcohol, that my life had become unmanageable.

I came to believe that a power greater than myself could restore me to sanity.

I made a decision to turn my will and my life over to the care of my higher power.

This is not as easy as it sounds for me, note the use of ‘higher power’ in place of the more commonly used “god.”  I’m an atheist who doesn’t believe in anything if it hasn’t been proven by science.  But I was pretty desperate to get help, so I was able to cobble together a pantheistic type theory of a connected universe and the alanon group itself as a knowledge base with answers to common problems that works for me.  When I need to ‘turn it over’ I have an image of a helium balloon with my worries tied to its ribbon, and I release it to the universe.  (it’s ok, you can laugh.  The important thing is I found a way to make it work with my cynicism.)

All my life, I had been a fixer.  Control was incredibly important to my sense of well-being so when I ran into a problem, I set myself to fixing it with all my energy, so that my peace and ease could be restored.  I fixed my problems, I fixed my husbands problems, I fixed my sibling’s problems.  But I could not fix my son’s problems and this was cause for great distress.  I did a lot of research into biomedical treatments, causes of autism, vaccines, and the like.  I feel my cynical atheistic attitude actually helped me here because I could see that the science behind these aspects was sketchy at best, and nothing I, personally, could trust.  But that left me without a way to fix things for G and that was incredibly upsetting to me. 

Then, an incredible thing happened.  While sitting in the rooms one evening after the holidays, when the transition back to school was particularly stressful and volatile for G, I substituted the word ‘autism’ for ‘alcoholism.’  I suddenly felt a great weight lift from my shoulders.  I was powerless over autism.  By trying to exert power over autism, I was causing my life to become unmanageable.  Believing in a power greater than myself, and greater than autism, could restore me to sanity.  I made a decision to turn my will over to my higher power instead of trying to exert my will on autism, and therefore my child.

This doesn’t mean I have given up on my son – I still try to help him in every reasonable way I can so that he may learn coping skills and life skills, and I advocate for him in the community until he is ready to take on the role of advocate for himself.  The key word is reasonable. I recognize that I can’t make him be different because his autism is a part of him.  I can’t make him learn faster than his own pace.  I can’t force change, it has to evolve naturally.  And the small steps we take each day toward independence will be more effective than the miracle concoctions, diet changes and assorted cures being sold to me on the internet.

I was able to put my new found theory into practice last month when G started school.  It has been one of the most challenging transitions of his school career.  (so far)  When the parents of classmates started making complaints, I became overwhelmed by the stress of it all.  So I consciously sat down and worked my first three steps with autism in mind.  And it helped enormously.  I was able to focus on doing what I could to help G and to effect change in the attitudes of the people around him.  I recognized the things I couldn’t change – specifically that G was going to have to do the work of adjusting on his own.  I could support him with checklists for his schedule, snacks to keep him energized and introductory letters to parents, but I couldn’t change G into some kind of model student.

Sometimes when I read other blogs and blog comments, I can hear the anger and frustration in the voice of the parent.  I’ve been there.  I recognize that feeling and I still struggle from time to time.  Finding a mechanism to achieve serenity has made such an incredible difference in our family.  Because I’m not as irritable, my family  is not as on edge.  We’re able to take things as they come and enjoy the good moments more fully. 

I’ll close with this final nugget:

Grant me the serenity to accept the things I can not change

The courage to change the things I can

And the wisdom to know the difference.

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.

Waiting and Seeing

The presentation on differences was given friday and went well.  The school psychologist started out by having the kids pair up and notices differences in each other.  They talked about physical differences, moved on to physical disabilities and what they would do to include a classmate with a physical disability.  Then she talked about the brain and differences in how people think and feel before moving onto some examples of cognitive disabilities and asked what the kids could do to include classmates in that situation.  I left right before the end because I didn’t want G to catch me there but felt very comfortable with the information that was covered.

We also wrote our introductory letter and got it to the teacher in time to be placed in the kids friday folder.  We felt like that was the most discrete way to get the letter out.  It also gives the parents the weekend to talk with their kids about differences and inclusion.  (hopefully)  We left our phone number and email address on the letter and made it clear we were available to talk with any parent that had questions or wanted to talk about G and their child, but haven’t heard anything so far.

Another big event is that we introduced the concept of Asperger’s to G via the book All Cats Have Asperger Syndrome.  We chose this book for the level of information and the cute photos of kittens.  It was a big hit with G, he giggled at the silly kittens during the first read friday night.  Tonight, I asked him what book he wanted for bedtime and he selected the cat book again.  But this time he asked what Asperger Syndrome was.  I told him it was a description of how certain peoples brain’s worked.  And then I told him AS was a description of how his brain works and that is why we bought him the book.  He seems to have accepted that at face value but it can take some time for him to fully process the information so we’ll have to wait and see.

I’m nervous about drop off/pick up tomorrow.  And I’m nervous about back to school night.  But I’m nowhere near as freaked out as I was before we did this.  Taking action really went a long way to calming me down.  I know we’ve done everything we can.  Again, I just have to wait and see.

I’m freaking out…

We got a call from the school psychologist yesterday.  G refused to go to recess with the other children.  He knows he’ll get in trouble when he hits and he knows it is hard to stop himself from hitting on the playground.  He got super anxious about the whole situation and just completely refused to go.  So his aide took him to the other side of the building, to a quiet spot of grass and they kicked a ball around.  His anxiety is also ramping up in the classroom, causing more incidents there as well, which makes the kids not like him more, which ratchets up the anxiety, which causes more hitting, etc, etc.

The other bomb she dropped is this.  One parent has concerns about the ’safety of the children’ while G is in the classroom.  So far, this is an isolated situation, but the psychologist is concerned that she’ll voice this concern to other parents and it’ll turn into a very bad situation.  So the presentation to the kids was moved up from next week to today.  G will be out of the class and I plan to attend to hear what the kids are told.  I desperately want this to work – to cut of this vicious cycle.

The principal also suggested we write the classroom parents a letter introducing ourselves and explaining G’s disability and the steps we’re taking to address the problems in the classroom.  Apparently, another family used a similar intro-letter last year and it helped a lot to foster understanding.  We’ve called that family and asked them for help.  I’ve also found a letter to teachers on the Oasis site that we’ve used to help with the language of describing autism/aspergers.  We plan to get this letter sent home no later than Monday because Tuesday is back-to-school night.  I want everyone to be informed so I can address concerns directly. 

I’m panicking.  Truly – I cried all day yesterday (not in front of G, of course) and I barely slept last night.  When I did, I had dreams of parents chasing us through the school with pitchforks and torches.  I am so incredibly grateful that the school is on our side, that they’re attacking this proactively and it isn’t me begging them for help.  I just wish this next week was already behind us.

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?