Autism Acceptance Day – 2012

Every year, I ramble on about how I want today to stop being about awareness and start being about acceptance. Today, I walk the talk. In the last year, I’ve moved from being only a mom obsessing about every new scientific advance and behavioral therapy, agonizing over how what I’ve read can help my son, to being a paraprofessional – applying my obsessive knowledge outside my family. It’s been really healthy for me. It’s given me an outlet for what I’ve learned that is more productive and it’s given me a better perspective on how we’re doing as a family. And I’ll say that my son is doing very, very well.

Here’s how I spent my Autism Awareness Day.

Woke my son for school by rubbing his arm, whispering his name and promptly leaving the room with no extraneous conversation. Waited for him to be ready to get out of bed and walk to the kitchen.

Made a bagel and gave him the choice of peanut butter or cream cheese as a topping.

Printed out his daily schedule, giving him time to look it over during breakfast.

Prompted G to dress and brush teeth.

Helped him tie on his new boots, the extra stiff ones that will hopefully help to keep his toe-walking to a minimum.

Drove him to school, reminding him to use his words when frustrated instead of hitting with his hands.

Grabbed a cup of coffee before heading to work.

Picked up my student and took him for his 15 minute sensory break. Did a puzzle while lying on his belly in a sling/swing, did football and superman exercises, and deep pressure exercises. Finally, ended with jumping jacks on the mini-tramp, focusing on getting his arms and legs moving at the same time.

Dropped my student off with the speech therapist and led a book club with six of his classmates.

Picked up my student, practiced his oral presentation on Cheese (food projects) several times. Focused on enunciating the words and facing his imaginary classmates.

Read books in between practices, working on sounding out unfamiliar words for independent reading rather than asking and memorizing.

Sat with my student while some of his classmates shared their food presentations.

Realized he wasn’t engaged in the presentations and wrote a social story about how to listen to classmates projects and how to fill out the simple response form after the presentation.

Sent him to recess, sat with the neurotypical students who also didn’t understand how to fill out the response forms and were missing recess until they were completed.

After sending the NT kids out for what was left of recess, quickly ate my lunch, performed my recess duty while my student was at lunch, came in to find he’d left the cafeteria while the lunch monitor was distracted and was unaccounted for.

Located my student in the hallway by the bathrooms, brought him back to the classroom for story time, helped him through the post-story comprehension activity by asking prompting questions and turning the activity into a challenge rather than drudge work.

Sent him off to PE with his class and ended my 4 hour work day.

Next I’ll pick up my son, prompt him through his homework and wait for the babysitter’s arrival so I can begin my weekly date-night with hubby.

So how was your World Autism Awareness Day?

Published in: on April 2, 2012 at 2:29 pm  Comments (1)  

Aides Are Awesome

G had an aide attend camp with him the last two days.  It was difficult to get him to accept the change in what he considered his routine – we had to get the aide to be very casual when approaching G and start quizzing him before G would relax.  G’s latest interest is the abbreviations used when texting, so we compiled a small list for the aides to use in engaging G.

The aide’s were very helpful.  Friday’s aide in particular, he was actually G’s ski teacher all winter long so he knew G’s quirks, how to see the warning signs of frustration and how to redirect G.  It was really great to have him.  Plus, he got us some fabulous intel on what was triggering G’s aggression.  One trigger was an obvious problem that we’d already suspected.  The other boy, lets call him Q, tended to stay unengaged with the group and would wander around instead of participating in the activities.  G considered this a violation of the rules and would want to ‘make’ Q pay attention.  G enforcing the rules, or making up his own rules and then enforcing them, is a chronic problem.  We’re trying to teach him that only adults enforce rules.  Before we leave him, we ask him to tell us who is in charge as a way to remind him that he is not.  Any other tips on this issue would be great.

The second situation where G hits is most interesting.  The aide was able to observe both boys.  He noted that Q would wander about without engaging and the counselor didn’t do much to try to engage him.  Then every now and again, Q would walk up to G and stand very close, invading G’s personal space.  Within a minute, G would get agitated and start to push Q away.  The aide was able to intervene each time and get Q to move away before G snapped.  One time Q was standing close behind G when G, who is a toe walker which means he chronically moves around to maintain his balance, stepped backward and bobbled into Q.  Q walked up to the aide and said G pushed him.  Since the aide saw exactly what happened, he let Q know G didn’t purposely push but bumped into him on accident.  The aide also noted that G was the only child Q approached and stood close to in this manner.

That incident has formed our theory of the trigger.  We think Q wants attention but doesn’t know how to constructively seek it out.  However, he knows that if he stands close to G, then G will hit him.  Q has probably learned that getting hit garners attention from adults, perhaps he gets sympathy cuddles and even extra privileges when this happens. 

And we learned that G doesn’t know how to constructively deal with a situation like this.  To test this out, I stood very close to G in our kitchen.  Sure enough, he put out a hand and pushed me away.  I tried it again a few minutes later, and he smacked my arm.  (not hard, but still…)  So we started teaching him how to use his words to say something along the lines of, “Get out of my space!”  Politeness is purposely absent – we find if we’re trying to replace aggression with words then the words need to start out aggressive to feel like an effective alternative to G.  As time goes by, we tweak the words to become more socially acceptable.

So having an aide at camp helped, not just because it stopped G from hitting the other camper with special needs but because it provided G with an advocate.  Unfortunately, we never got to share this information with Q’s parents.  They conspicuously avoided us the rest of the week.  If we see them at another school autism event, there are sometimes parent chats, we may share what we know.  But as it sounds a bit like blaming the victim, I’m not sure we’ll ever go there.  It’s enough that we know that G didn’t maliciously target Q and that we fully support G. 

He’ll have an aide attend his last week of camp in August.  And if we do camp again next summer, we’ll arrange an aide from the start.  Camp is full of headaches and stress for us, the program seems remarkably uninterested in accommodating special needs students.  But as long as G is interested in going to camp I’m determined to make it happen.  The camp is just going to have to deal with us.  😉

ETA – 3 days later after posting, I finally realized I neglected to title this entry!

Published in: on July 26, 2010 at 7:51 am  Comments (2)  

Camp Breakdown

The second session of camp is not going well.  G is having the types of behavior problems we haven’t seen since last September, where for what seems to be no reason at all, he will hit/punch/push another child.   Unfortunately, the child he’s been hitting is the other camper with special needs.  (specifically, SPD but not autism)  I feel just terrible about this situation. It is never good that he hits anyone, but to hit another child with a disability is mortifying.  We’ve heard via the counselor that the other boy’s parents are upset that G is picking on their child. 

What I want to explain, but have not yet had the opportunity, is that part of  G’s autism means he does not have the ability to select a child and pick on them.  What is the more likely scenario is that their boy’s manifestation of his disability is triggering a sensitivity that is a part of G’s disability and G is lashing out in frustration.  This is an explanation, not an excuse. 

What we need to know is what is happening between the boys before G hits.  If we can determine the trigger, than we can work with G to either avoid the trigger or to handle it in a constructive way.   But this information is not easy to come by.  G knows he is not supposed to hit so when we try to talk with him about what caused him to hit, he goes straight into emotional meltdown.  What I learned from listening to Tony Attwood speak this past weekend (a conference post is pending) is that kids with Asperger’s don’t always have the ability to look at a past event in perspective.  Instead they relive the event as if it were happening again at that moment and feel the associated emotions as acutely as they did during the actual event.  I find this to be true with G, talking about why he hit this other boy seems to trigger shame, frustration and anger. 

We’re not getting answers from G, and the counselor is overwhelmed.  She doesn’t have another fully trained counselor working with her, instead she only has a junior counselor so she only sees the event after the boy has been hit.  There were two junior counselors last week so she had a better handle on the group, but one has been reassigned and now chaos reigns.  I’m extremely irritated with the camp program for their staff scheduling because we worked really hard to get them to realize that we were sending a child who needed more support than average. 

 I’m especially irritated because my first warning that camp wasn’t working out was a phone call yesterday afternoon where the camp administration asked if we could provide an aide for G because they weren’t able to provide the level of support he needed. The point of all the advance training with the BOCES was for them to understand and provide this extra support, as we were assured they were a fully inclusive organization and were familiar with handling campers with disabilities.  ( Ok – I can feel my blood pressure rising so I’m going to take some deep breaths and try to finish this post without ranting.)  What ended up happening after 10-20 phone calls to various resources is that the adaptive sports program was able to get volunteers trained in cognitive disabilities to act as G’s aide.  They’ll not only be able to help him take breaks as needed, they’ll be able to see what is going on between G and this other boy to help us figure out the trigger for the hitting.

I fully understand we’re not in a righteous position, as G is the one doing the hitting, but I’m also frustrated with the lack of understanding on the part of this other family.  I’m frustrated that this family just dropped their child into camp with no warning when we’ve busted our butts to make sure everyone was ready for G. Even though they clearly don’t have the aggression issues we have, I would expect them to have a better understanding of the situation.  If a disabled camper were hitting G, I would work to find a solution rather than blame the other parents for not being in control of their child.  

There are two more days of camp with this particular family to get through.  G has one more week of camp scheduled for August and we’re going to work with adaptive sports to have an aide with G.  In addition to providing excellent social opportunities throughout the summer, G really loves camp and really wants to participate.  Which makes me determined that he will participate, no matter the angst and frustration it causes for me or anyone else.

Published in: on July 21, 2010 at 12:26 pm  Comments (2)  

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.

Published in: on November 8, 2009 at 10:51 am  Comments (4)  

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.

Published in: on July 24, 2009 at 2:32 pm  Comments (3)  

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.

Published in: on June 4, 2009 at 10:35 am  Leave a Comment  

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?

Published in: on May 28, 2009 at 5:56 pm  Comments (5)  

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.

Published in: on February 25, 2009 at 4:17 am  Comments (5)  

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.

Published in: on December 28, 2008 at 12:31 am  Comments (1)  

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.

Published in: on December 15, 2008 at 6:34 pm  Comments (3)