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?

Autism in Adults

There’s an interesting study that was discussed on LB/RB that supports the idea that the number of autistic adults is 1% of the population, the same as the population of autistic children.  This compliments a conversation I had with my husband last week.

We were taking a walk and discussing G’s latest round of issues in school.  Specifically how he might feel now that his desk isolated from the rest of the class.  Instead of being in one of 4 small groups, his desk is against the wall by the teacher’s desk because he was having so much trouble keeping his hands within his own personal space.  Our worry is that he might feel shunned.  Then I remembered being in a similar situation in 5th grade and the relief I felt that I could focus on my work and not have to deal with the other kids and their snarky remarks all day.  I didn’t have to pretend to be part of the group or pretend to understand their stupid jokes. 

This is not the first time I’ve compared my school experience with G’s.  And I’ve mentioned on this blog in the past that G and I share similar sensitivities.  And I have some other sensitivities he doesn’t share .  We walked quietly for a moment, then I asked Dh the big question.  “Do you think I might be autistic too?”

He was quiet for another moment before answering me.  “Yes,” he said, “It’s highly likely.”  He then outlined many of my traits (I don’t want to disclose all of them right now) that would be considered red flags in a child.  This is certainly not conclusive, but it makes me think.  I’m so curious about this, I’d actually agree to being evaluated if I could find someone qualified to test adults.  It would explain so much and I would actually be so proud to have something like this in common with my son.  Does that sound crazy?

If the percentage of autism in adults is 1% and there is a genetic component to autism, then it stands to reason that at least some of the parents of autistic children are undiagnosed autistics themselves.  And would be considered very functional and successful, given that they are probably married, working and raising children of their own.  It makes me feel very hopeful for G’s future.

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.