G’s Olympic Trials

Our ski town had some olympic qualifying events over the weekend, so we took G to see them as a test run for the olympics.  We brought a folding chair as the spectating area was standing room only (must check on this for the actual olympics)  so he could be comfortable.  He watched for maybe 10 minutes before getting bored.  So Dh whipped out his ipod, I whipped out the headphones from my massive mom-bag, and G watched episodes of Fetch With Ruff-Ruffman – his current obsession.  We were able to watch the entire 90 minute competition this way.  I didn’t need the snacks, games, books, hand warmers, or noise cancelling headphones also stuffed in my massive mom-bag, but was still glad I had them just in case.

I’m really not upset that G only watched for 10 minutes, either.  I figure that is a typical attention span for any 6 year old.  Maybe a tad short, but still reasonable.  As long as G is entertained so that I can see the olympic games, I’m satisfied.  Because, as I’ve mentioned before, this experience is all about me. 

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.

How Crazy Am I?

So what kind of vacation do you plan when you have an autistic child who hates crowds?  Why a trip to the Winter Olympics, of course!

No, I’m not kidding.  I am exactly that crazy.  I am an olympic fanatic, I love everything about the games.  When I was a child my parents would let us stay up late for two weeks to watch all the events.  When the Olympics were in Salt Lake City, Utah, I couldn’t afford to go but the torch ran through our town.  I went to watch it pass by and after the event was over, I ran into one of the torch bearers.  He let me hold it with him and I got the most amazing picture!  Seriously, it is even better than my wedding photos.

When I first heard the announcement that Vancouver had won the 2010 olympics, well before we had even a hint that something about G was atypical, I started making plans.  And throughout our diagnostic path I’ve never given up on those plans.  This is either going to be the best experience of our lives or one of the worst.  We’ve traveled with G pretty extensively around the country.  He loves airplanes so air travel has always been pretty easy.  He does reasonably well in hotels, particularly if the hotel has a pool.  I’ve rented a two bedroom condo in Whistler in a complex with a pool and hot tub.  This gives us the flexibility of stocking the fridge so G can snack at will and we can make some dinners at home.  The ski resort is open for business during the games so we’ll be able to get out and have some active fun.

The tricky part is going to be actually seeing the 3 events to which I have tickets because in the last year G has developed an aversion to crowds and has always been sensitive to noise and chaos.  We’re going to attempt to see aerial skiing, ski jumping and bobsledding.  I think he’ll find the first two events entertaining.  I’m particularly worried about bobsledding since spectators ring bells and noisemakers.  We’ll be bringing his noise cancelling headphones, an ipod loaded with his favorite videos and the handheld video game system he uses to tune out sensation.  Our ski town is hosting some qualifying events in December and we plan to use them as a test to see how G reacts and to see if our planned preparations help him cope.  We watched the Summer Olympics together and I got him pumped about seeing the winter games.  And he loves playing Mario and Sonic Summer Olympics on the Wii.  You can be sure we’ll be getting the Winter Games version very soon so he can start learning about the events.

As a last resort, my awesome DH has said he’ll take G out of the arena and walk him around or find a quieter place so I can see as much of the event as possible.  This wonderful, thoughtful offer makes me feel like crap.  It makes me realize I am definitely placing my desires and dreams above G’s needs in this respect.  I’m doing everything I can think of to prepare him and make him comfortable, but in the end this is all about me.  I’ve always wanted to do this and can’t pass up an opportunity when the games are so close.  Or more truthfully – I won’t pass up the opportunity. 

On the other hand, I wonder about the way mothers place their needs dead last in favor of the needs of their spouses and children.  Particularly if the child has a special need or disability.  Is it really healthy to place a higher value on the needs of everyone else all the time?  Isn’t it ok to pursue a dream of our own once in a while?  Yes, I’m justifying now.  The fact is, we’re doing this no matter what.  I hope this is going to be a fantastic experience.  But I’m ready to accept the consequences if it turns out to be horrible.

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.

Don’t Take It Personally

Around this time last year, I mentioned that G has a phobic fear of needles that triggers his most physically violent behavior.  He hits, kicks, headbutts, looks for things to throw and tries to run away.  Fortunately, this reaction cropped up at the very end of the vaccine schedule.  We took him for his kindergarten shots and discovered we could only get 2 of the 3 because the 3rd needed to wait until after his birthday.  So we got the two, which he found shockingly painful, and when we returned for the 3rd he completely freaked out.  We got it done, but it was incredibly difficult.

When it comes to the seasonal flu vaccine, we either skip it and take our chances, or we search out the flumist.  Last year, we went the flumist route and drove 100+ miles to my mother’s county where the health dept had it stocked.  It went very smoothly, G was very interested in how it worked and was relieved not to need a shot.  He was very cooperative and I really thought I had the issue figured out.

With the H1N1 vaccine, the first batches available in our county were the nasal variety and were reserved for the highest risk group, 2-4 year olds, but future batches were uncertain.  Given G’s reaction to shots and my desire to have him vaccinated, I kicked into advocate mode.  I spoke several times to our health dept, shamelessly playing the Autism Card and eventually wore them down.  They agreed that if there was any nasal spray available after their walk-in clinic for the 2-4 age group, then I could make an appointment and get G the first dose of nasal spray.  I figured chances were good that they would get at least one more delivery of nasal vaccine by the time of their next clinic and we’d be good to go!

 I had prepared G for the visit to the health dept and he was agreeable.  Until we arrived.  From the moment we sat down and I started filling out the paperwork, he started getting worked up.  He got tense and fussy and started repeating that this was going to kill him.  I got him calmed down and thought we were back on track but the second his name was called he jumped up and started running out the door.  I got him corralled and walked him into the exam room.  We explained the procedure to reassure him, but it was too late.  He was screaming that it was poison and we were trying to kill him.  He tried running away again.  I got him on my lap and the nurse told me to hold him down.  I had his arms crossed over his torso, my legs wrapped around his  but couldn’t do anything about his head, which slammed into my mouth.  Then he tried to headbutt the nurse.  He got free and tried to trash the room.  After about 20-30 minutes of this, the nurse gave up and said it wasn’t going to work.  We left unvaccinated.

I was crushed.  I worked so hard to get special permission for G so that it would be easier on him.  I felt betrayed and unappreciated.  It was very difficult for me to remember that he was not in control of his actions, that he was in a severe fight-or-flight frame of mind that had nothing to do with logic.  Situations like this are so difficult.  I believe in vaccination and believe that this vaccination in particular is important.  But G’s needs are in direct opposition.  What’s a mom to do?  Should I ask for a sedative of some sort to be prescribed?  Should I bring him in and have him held down for the shot, which is one dose instead of two and requires less cooperation than the nasal spray?  Or should I give it up and keep our fingers crossed that we don’t get sick?

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.

Life Lessons

G and I spent some time this afternoon doing our favorite thing – baking.  We decided to make brownies today, which is something I am incapable of baking correctly.  I’ve tried both mixes and from-scratch recipes and for some reason they never turn out.  They’re either extremely goopy (G loves to tell people that you have to eat my brownies with a spoon) or baked into something resembling charcoal. 

I love baking with G is because it is such a great way to teach important life lessons.  In my opinion, there is no better way to teach a child about focusing, following instructions exactly and having patience.  The end result is such a great reward for the time he puts in.  We’re able to work  a little math in with fractions and measurements and some fine motor work when it comes to manipulating the measuring spoon.

We perused our cookbook collection and decided to try a new recipe for brownies.  The fact that it hasn’t worked out the last 30 times we attempted brownies was no deterrent.  After all, what lesson is more important than picking yourself up after a failure and trying again?