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.

Fair is Fair

Part of the reason I’m able to understand my son, to the extent that I do, is that I share many of the same sensitivities.  Pulp in my orange juice makes me gag to the point of throwing up, I’m easily overwhelmed in chaotic situations and sometimes need to retreat into a book or a quiet room to level out.  One way we’re different is that I am very, very, very sensitive to repetitive noises.  I have considered myself fortunate that G’s stimming takes the form of movement rather than being expressed verbally.  I’d like to think I’d be a grown up and learn to deal with it, but I’m not completely sure…

G’s current facination is with coins.  He loves to spread out all the coins from his piggy bank and examine them.  He compares their shapes, the patina and discoloration of older coins, organizes them by age, then reorganizes them by size or value and so on.  He’s content to do this for hours. 

Last night he was trying to get the last coins out of his piggy bank by swirling it around.  For about 20 minutes, even though the tv was on and I was working on something else, all I heard was this: 

Swirl swirl plink plink plink.

Swirl swirl swirl plink plink.

Swirl plink plink plink plink.

It was like a version of water torture for me.  Right before I cracked and became a raving maniac I went to  G and asked him to stop.  I reminded him that I was sensitive to certain noises and just couldn’t handle that sound any more.  He was pretty insistant tha he needed the coin and he had to get it without help from me.  But I was just as firm that he wouldn’t accept help then he had to take a break and try to get the coin again later.  I was able to relate it to his sensitivities and how I respect his needs but need that same respect in return.

I find as he gets older the concept of mutual respect is clicking.  We’re gently shifting away from an ‘everything-for-G-the-moment-G-needs-it’ type attitude and we’re asking him to consider his family members needs from time to time.  He’s still 6 (almost), so even if he were a typical kid this would be hard.  But I have to say, I’m pleased with progress.  He left his coins in a pile on the rug and moved onto another activity.  About an hour later, he asked if I had a long enough break and if he could start sorting his coins again.  He was so sweet about it, I would have dug out earplugs before I said no.  After all, fair is fair.  If he takes a break for me, I need to find a way to accomodate him as well.

Toe-Walking Part 2

Thank you all for your suggestions and comments on my previous toe-walking post.  We went to see a man about orthotics last week.  He watched Griff walk a little and then whipped out his catalog and showed us what they make for toe walkers.  It is an L-shaped brace that straps around the foot with velcro, and extends up the back and sides of the leg, securing around the front with more velcro.  G took one look at it and proclaimed he’d never ever ever ever wear it. 

From eating dinner to participating in therapy, I’ve always made sure if I pick a fight I win it.  I never want G to think that escalating his behavior will get him his way.  And frankly, dh and I weren’t on board with the idea of orthotics.  Which means we wouldn’t be motivated to fight that fight with G.  So we thanked the man for the information and went home without casting G’s feet for the orthotics.  We’re just not ready to take this step yet.

Which leaves us trying to figure out how to address this ourselves.  We’ve started reminding G constantly to stand on his heels.  We do exercises every night after bath to prevent his heel cords from shortening further and hopefully to start lengthening them.  We bought some flip-flops which worked for a couple of days so I think when it gets warmer this may be a viable solution.  We have some very stiff hiking boots for him to wear during camp.  And I found a pair of toy shoes called moon walkers that looks like fun for G and would force the heel-toe motion of walking.

I’ve heard other parents say not every therapy is right for every child and as parents you have to choose what you know is right for your own child.  Up ’till now, we’ve tried everything the school team has suggested.  Not all of it was effective, but we made a good faith effort before deciding to move on.  This is the first time we’ve refused a recommendation without trying it first.  I know we made the right choice for G, but I’m still nervous.  Will I look back in 5 years and realize if I’d forced the orthotics I might have avoided surgery?  Will he walk on his toes for the rest of his life?  I want to be a good advocate for my son but making the proper decisions can be incredibly difficult.

Toe-Walking

Does anyone have experience with this?  Our G has walked on his toes shortly after he started walking.  DH walked on his toes as a child and I walked on my toes until 1st or 2nd grade.  I also grew up with a borderline-abusive father who would ‘correct’ my toe-walking by banging his fist on the top of my head to force me onto my heels.  So I fully admit I have issues on this topic that make it hard for me to make the right decision.  Or any decision, really.  When it comes to G, I’ve been very hands off about fixing it.  I assumed he’d grow out of it on his own and honestly, the thought of addressing it makes me nauseous. 

But, G’s OT is concerned.  And G has been complaining of pain in his legs lately, especially right after he gets up in the morning.  Once I asked him to stand on his heels while I applied sunscreen (It makes him more stable and I’m less likely to get it in his eyes) and he told me that he couldn’t because it hurt.  So I finally decided we needed to do something about it.  And again, it makes me feel sick. 

We sat in on his OT appointment yesterday where a visiting physical therapist checked him over.  She taught us a couple stretches to do with him after a warm bath that makes his muscles more limber.  And the OT has really pushed us to look into orthotics.  So we got a prescription from our family doctor and have an appointment today.  But I’m concerned about the stigmatizing aspect of this.  Our thought is that if he needs inserts in his shoes or specific shoes then we can have him wear them all summer, correct the problem, and send him to school next hear in regular sneakers so he won’t look different.  What I’d really like to do is continue ignoring this problem, but then wouldn’t his toe-walking make him stick out as different?  I also had a friend tell me to have him wear flip-flops all summer, as that would make him use his heels at least part of the time.  Would that work?

I need some help here.  What is the best thing for G in this situation?  What should I do?

Empathy revisited

I find I don’t post as often when I’m not feeling good about things.  I try to be positive most of the time, although I do post an occasional rant, but when I can’t find the bright side or something to laugh about, it gets harder to write. 

We had friends up for the weekend recently who have a daughter G’s age and a daughter that just turned 1.  The one year old is walking and exploring her environment which means she routinely breaks many of G’s rules.  We worked a babysitting swap so each set of parents could get out to ski.  Before we left, I had to run down the things they should watch for with G, including not letting the baby and G be together and unattended at any time because if the baby broke a rule I didn’t trust him not to retaliate by hitting or shoving.  It made me sad.  I felt like I was warning people to protect their children from my own son.  G’s also had a difficult month at school, as illness is a major behavior trigger and he was so sick in January.  We’ve been meeting with his team for a new round of behavior plans and positive interventions.    It has been difficult to find the positive to blog about.

Tonight at dinner, we were chatting about G’s day at school and were discussing a program the school runs where they gather certain kids together first thing in the morning and do a bunch of gross motor exercises.  It helps get the fidgets out and calms the students for the rest of their day and G loves to tell us about the fun activities they do.  We love that he can recall this time during his day and try to work it for all it’s worth!  We asked G if any of his friends go with him and he listed a couple names.  Then he says that ‘P’ goes too.  P is another kindergartener that is autistic and I’ve chatted with his mom a time or two.  I asked G if P was a nice boy and a friend of his.  G replied, ‘he’s kind of nice, but he screams a lot and I don’t like that.’  (please note that another of G’s sensory triggers is sudden, loud noises to the extent that he has been known to run from public bathrooms in a total panic if the toilets flush too loudly) 

Dh and I were both silent for a moment as we struggled to explain.   This is what we came up with:  ’G, you know how when we’re in a crowded place or when we’re somewhere that is too noisy you feel anxious and upset?  And sometimes you react by screaming and hitting?  Well, P feels like that too and deals with those feelings by screaming the same way you do.  P is doing the best he can to cope with a tricky situation the same way you do your best when you feel overwhelmed.  P is a very nice boy and it would be great if we could be more understanding when he needs to scream.’   G silently ate his dinner for the next few minutes in that way he does when he is processing something.  I hope we explained adequately without making too many assumptions about a child we don’t know very well.  Mostly, we spoke from the heart in the way I would want other parents to speak to their children about G.

Circular Conversations

G:  Blah!  My shirt has a yucky flavor, it tastes like soap.

Me:  You must not have pulled up your sleeves when you washed your hands.  And you shouldn’t be chewing on your shirt anyway.

G:  But I like to chew my shirt.  [chews sleeve again]  Blah!  It tastes yucky.

Me:   There’s soap on it.  Don’t eat your shirt.

G:  But I really want to chew my shirt.  Blah!  Taste’s like soap!

Me:  G, don’t… [sigh] nevermind.  You’re going to have to work this out for yourself.

My Angel

Today was the first day of ski-pe.  I was as ready as I could be with everything labeled and packed the night before.  And yet, I was unprepared for the chaos of 30+ kindergarten parents trying to figure out how to drop their kids off for ski-pe.  It’s days like today where I am convinced G’s sensory/autism issues were passed down genetically.  I was overwhelmed and seconds away from throwing myself to the floor in full meltdown mode just like G does when G’s special ed teacher walked by.  She asked how I was doing and all I could say was, “I am so overwhelmed!”  She took both my hands and calmly said, “You’ll get through this, you’re doing just fine.  You can do it.”  And then she disappeared into the crowd.

I did feel much calmer.  I felt focused again.  I was able to finish up jamming G into his ski-boots, getting his heat packs tucked into his gloves, making sure his goggles were attached to his helmet properly and in line for equipment check.  I can’t explain it except to say it was a magical moment for me.

G, by the way, did great.  He was so amped to go skiing today.  He’d greet all his friends excitedly, “Hi L!  It’s ski-pe day!  Are you going skiing too?”  L was decked out from helmet to boots in ski gear, making this a redundant question, but was just as excited about ski day.  It was very cute.  G is participating through the adaptive program again and has the same teacher and assistant as last year.  As long as I can make it through drop-off each week, he’ll be in fabulous hands and have a great time.

It’s The Most Wonderful Time…

Actually, it is far from the most wonderful time of the year.  I used to love everything about the holidays.  I still enjoy myself, but find myself counting down the days until January 2.  That magical day where all spontaneity ceases and the blessedly peaceful routine settles once more upon the G-family household.

We made the trip to Denver again to visit my sister for Thanksgiving.  We did our best to keep to a routine by doing the same types of activities at the same time each day, but there just wasn’t enough time for G to learn it and be comfortable with it.  By the end of the trip he was extremely contrary, “No, I won’t go to the Aquarium and have a lot of fun.  I won’t play my new games and I won’t watch my favorite show.  I won’t do any of that, I will only do the opposite.”  He never quite figured out what the opposite of all that was, but he was determined to do, or be, opposite.   Today was travel day and he once again had trouble processing what was spoken, repeating, “What did you say?” many times.  His behavior escalated throughout the afternoon until he was just plain mean to us.  I heard G banging on a door upstairs just before bed – I suspect DH locked himself in the bathroom for a few minutes for some emergency meditation.  I’m no fool, having taken the morning shift which involved arguing with G extensively before the sun even rose, I left them to work it out amongst themselves.  I’m certain we over-accommodated in an effort to be understanding and to keep the peace.  Tomorrow we will start cracking down on bad behavior and hold the line on rules and consequences.  Which means tomorrow will be hell.

We had plenty of good moments during our trip.  My sister had a full house so we stayed in a lovely hotel – a hotel whose pool opened at 6am.  We took turns getting up with G and taking him to the pool for a pre-dawn swim which really helped smooth out his rough edges.  He loved the “magic bed” aka sleeper sofa that he slept in.  He loved remembering our room number and was fascinated by the numbering system where each room on floor 5 also started with a 5.  We’d pass people in the hallway and he’d stop them to say, “Our door number is 511!  What is your door number?”  The people he stopped were very kind and didn’t act as if we were stalking them at all. 

Another great thing was to see how much G has matured in the past year.  Last year in preschool, G had lots of trouble with the very young kids who did not understand how to follow G’s rules.  G would respond by enforcing the rules physically.  My niece is just over 1 year old and is right at that chaotic, unpredictable age that usually sets G off.  He certainly got frustrated and would yell and wave his hands at her, but he never actually made contact with her.  This is tremendous progress! 

So our holiday season has officially started and I’m already exhausted and done.  I’m going to make a concerted effort to focus on the positive and to remember how far we’ve all come in the past year.   And to remember that there are only 34 more days until we’re done with all this craptastic fun!

Look At Me

I started reading Look Me In The Eye:  My Life With Aspergers last night.  I didn’t get very far, it made my heart hurt so I had to put it aside or forgo sleeping entirely.  I’ve been reading elsewhere that it isn’t good to ask an autistic child (a child with autism?) to make eye contact to ensure they’re listening.  I am definitely guilty of this, I ask G to look at me before I give him important instructions.  I don’t make him look me in the eye, but still.  Today I had an opportunity to talk with him about it.  I asked if it is comfortable for him to look at my eyes and he said no, it is not comfortable.  Then just to see what else is and isn’t comfortable I asked about looking at my nose, ears, forehead, etc.  All are uncomfortable to G.  I asked if there was anywhere that was comfortable for him to look when he needed to listen, expecting him to pick something off in the distance, but he said my mouth.  I confirmed by asking again and it seems he prefers to look at someone’s mouth when he needs to listen to what they’re saying.

It was really cool to be able to talk with him like this.  I know I should take him at his word, but still I worry.  Is it ok to have him look at my mouth when I need his attention?  Is this something that helps with auditory processing?  Maybe I should work harder to come up with some other way to confirm I have his attention?  The one thing I know for sure is that he’ll be able to grow up and write a companion memoir -  “Look at my mouth:  my mother was nuts.”

The Dreaded Cliche

As I tell people about G and our evaluation process, the one thing I hear most often is, “he’s still the same G he was yesterday.”  It is meant to be supportive and reassuring, I’m sure.  And yet, my immediate reaction is to leap over the table and choke the living shit out of the speaker.

First of all, nobody is always the same person they were yesterday.  That would be incredibly boring.  We grow and evolve, our challenges and experiences shape and change who we are.  Expecting him to be the same person he was yesterday is really not expecting much of him at all.

But the real point that is missed is this.  My son is the same awesome, loving, lovable, curious, intelligent, ever-evolving wonder that he has always been.  It’s the world he and I live in that has changed overnight.  It has suddenly become a darker, scarier place.  I don’t trust the world to accept him for who he is the way I do.  I don’t trust the world to welcome his contributions the way it should.  I now see the world filled with people who stare and judge, who exclude him by ignoring him, who will marginalize him because he is different.  I feel pricklier, more protective, ultra-sensitive to any slight that may hurt his feelings.

G may be the same person he was yesterday.  The world has become colder.