New Study

I love health related studies, it’s one of my particular interests.  I saw this one yesterday and the implications fascinate me:

Link Between Advanced Maternal Age and Autism

There’s such heated debate about whether the increase in autism prevalence numbers signal a true epidemic or just better awareness and diagnosis.  It seems to me the answer doesn’t have to be one or the other, that it’s probably a little of both.  Then the conversation turns to what might be causing the increase, generally morphing into a vaccines/toxins debate.  I lose interest at this point because the science just doesn’t point to vaccines/mercury/toxins. 

What if this is the answer to the epidemic portion of the conversation?  Women are generally waiting longer than ever to start their family, preferring to see to their education first and establish themselves in their career.  Does the timing of the increase in autism prevalence correlate to more women waiting to start families, I wonder?  This possibility fascinates me! 

 Personally, I don’t see it as laying blame on the mothers again like the old refrigerator mother theory.  I see it more along the lines of downs syndrome information.  It’s common knowledge that as maternal age increases, chances of a baby with downs syndrome increases.  That doesn’t stop women from having babies later in life, but it does inform their decision.  For me, the information makes me feel better.  It reassures me that I didn’t do anything to G, feed anything to G, or expose G to something that affected his brain development.  It was simply a matter of timing.  I firmly believe I wouldn’t have been as good a mother if I had decided to have children earlier - my life was a bit chaotic in early adulthood.  I can better accept that this is just how it is.  With other theories, I can’t help but wonder if  G might be different.  (although I really like him as he is)  With this theory, I know for a fact that if I had started my family earlier, I wouldn’ t have G in my life.  And that is simply unacceptable.

“Adam” vs “Temple Grandin”

I saw the HBO movie, “Temple Grandin” last night and it contrasted sharply with the movie, “Adam,” which I saw about a month ago.  After watching “Adam,” I was very upset and very angry, but it was an oddly unfocused feeling.  It wasn’t until watching TG that I was able to figure out what I found so upsetting.  In “Adam,” the main character is debilitated in many ways by his Aspergers.  When his father dies, he is at a loss.  He is unable to perform well in his job, he is unable to socialize successfully, it seems he’s never left his New York neighborhood and is afraid to do so, he eats the same exact meal every night and doesn’t know how to interview for a job.  When the family lawyer suggests Adam sell the apartment his parents owned so he can live off the equity, Adam becomes overwhelmed.  It played into my greatest fears for G’s future. 

After watching TG, I realized I was incredibly angry at Adam’s parents.  By the end of the movie, Adam looked for a new job in his particular field of interest, practiced interviewing skills and was able to move across the country for his new job.  He clearly had the ability to do all these things, so why didn’t his parents teach these things before they died?  Why didn’t they help him learn the skills to find his own job rather than going out and securing him a job that wasn’t suited to his interests and led to his firing?  Why didn’t they push to teach him the rudiments of conversation?  There is a scene where Adam can’t handle the chaos of a restaurant.  We are familiar with that problem in our family with G.  But at 6 years old, we already have accommodations in the form of noise cancelling headphones and seats along the fringes of events so that he can start to get used to crowds.  We’ve worked hard to make sure G knows how to sit in a restaurant and knows the social dance of ordering from a menu.  It may still be difficult for him, but I expect that by 30, he’ll be able to get through a meal out in a way that Adam could not.

In contrast to “Adam,”  “Temple Grandin,” is all about overcoming challenges to succeed in life.  Her struggles were also familiar to our family.  The social awkwardness, the meanness and social rejection from classmates, the phobic fears of something as simple as an automatic door (for G it’s the automatic flushing toilets) – these are also issues we deal with daily.  In the beginning of the movie, when TG blurted out, “Are you a cowboy?!?” and after prompting returned to a more scripted, “Hi, I’m Temple Grandin, nice to meet you,” I laughed out loud, tickled because this so reminded me of my G.  Even though her greeting was awkward, it was clear she had been taught the social rules of meeting someone new.  I didn’t get the impression that Adam had any clue how to greet someone.

In TG, her family was accepting of her quirks while not letting autism become an excuse not to pursue dreams and succeed in life.  I was particularly impressed that whenever Temple Grandin refered to her autism, it was a positive description of how autism gave her insights and strengths that others didn’t have.  Success in TG may look different than the stereotypical mom and the dad in a suburban house with 2.5 kids and a 401K, but it’s clear Temple Grandin finds her studies and work fulfilling.  Temple was encouraged – even expected, to be independent, to go to college, to get a degree in her field of interest, to get a job and live on her own.  That’s exactly what I want for my G.  I want him to be engaged in life, to follow a dream, to be intellectually stimulated.  And above all else, happy with whatever path he chooses.

Sleeping In!

G took another small but meaningful step toward independence this weekend.   Operation Sleeping Beauty was a complete success!  Friday after school, I gave G the choice of waking us up to go downstairs with him or going downstairs on his own.  He really wanted to try going on his own, so once again I set up his dry cereal and his cup of milk.  I forgot to mention in the previous post on this topic that G eats his cereal and drinks his milk separately because he does not like it when his cereal gets wet.  Once I put everything downstairs he was all set for breakfast.

Saturday morning, promptly at 6am, I heard G’s door open.  I listened as he walked past our room and down the stairs.  After 10 minutes or more with no other noise, I drifted back to sleep.  Heavenly!  I woke up again at the luxurious hour of 7am and went down to find G had finished his breakfast and was blissfully playing his wii.  We had a babysitter Saturday night and he proudly told her about his new special weekend privilege.  This morning (sunday) was also successful and DH got to sleep in until 7 as well!  I know 7 doesn’t sound late to most people, but it’s quite a treat for us.  Maybe after awhile we’ll all be more confident with this new system – right now we’re both dozing with one ear open – and we’ll be able to sleep until 7:30.

Today’s Thoughts

I read an interesting, if disheartening, article about a study looking into why some kids are bullied or rejected by their peers.  Having social problems is the major risk factor.  Social problems are identified as:

Having problems reading non-verbal cues   check

Difficulty understanding social meaning   check

Problems coming up with solutions to resolve social conflict   check

It’s not that I’m surprised by this information, I know being bullied often comes as part of the package of Aspergers.  However, having the specific reasons spelled out like this was difficult for me to digest.  I read the article yesterday and had to put it away – I couldn’t bear to think about it.  We’re starting to see signs of children socially rejecting G and it hurts my heart like nothing else ever could.  But when I woke up this morning, the thoughts I shoved away yesterday were churning in the forefront of my mind.  It is time for me to deal with my worries directly, so I’m re-reading the article and considering solutions.

Luckily, the article also lists five steps to teaching the necessary social skills to kids with difficulties.  I appreciate this very much – too often these types of studies are all doom and gloom and leave me feeling hopeless.  Some of the tips we’re already using, others I’m not totally certain will work for G, given the nature of his particular flavor of autism.  But I’m willing to give it a good try.  There’s a book mentioned, you can be sure I’ll be adding it to my extensive library. 

Anyway, this is what is on my mind today.

Manic Monday

G is an early riser – we’re talking farmer hours.  We actually have a rule that he cannot get up for the day before 6am.  We put a clock in his room when he was 3 and had a picture of 6am next to the clock so he could start learning to tell time.  He can turn on his lights and read some books, but he cannot come to our room and wake us unless it is after 6.  This early rising habit works in our favor during the school week because we never have to use alarm clocks and we have plenty of time to leisurely eat and dress before we have to leave. 

This habit is not so fun on the weekends.  DH and I take turns sleeping in and the unlucky parent will stumble down to the basement with G and let him have ‘Wii Morning’ while dozing on the couch.  He is so good at getting the tv equipment started that we don’t have to do anything until he asks for breakfast.

So this past weekend we decided to try something new.  The night before we put a cup of milk in the beverage fridge in the basement and left a bowl of  dry cereal covered in plastic wrap.  We told him he could go straight down to the basement and start playing video games without having to wake us first.  He sounded pleased by this new privilege.  Until morning.  He was very upset and kept repeating that he could never ever get up without us.  So we decided to scrap Operation Sleeping Beauty and went back to the usual routine.

We tried something new and it didn’t fly.  That should have been the end of it, yes?  Oh no no no! This morning G came to wake me and was extremely upset.  He  had already gone down to the basement and didn’t find any milk or cereal.  He was demanding I put it downstairs right away so he could play wii.  I patiently explained that video games were only for weekends, that it was monday and that the routine was the same as always because it was a school day.  The rest of the morning was an emotional roller coaster.  He’d calm for a few minutes before weeping and wailing a few minutes.  Then he’d calm again, wail again, repeat repeat repeat.

Once I was able to get him to eat breakfast, he seemed to settle.  Since food helped, I stuffed his backpack with extra snacks and warned his teacher.  I guess we needed a reminder of just how important stability and routine are to G.  I still think the new weekend plan could work for him, we just need to wait until spring break or summer vacation before we change things up.

Cute Story

There was a special event yesterday so per our usual, DH went to help chaperone and to be there to help G in case he had problems.  The kids buddy up to walk between the classroom and the event.  Along the way, G’s walking buddy turned to DH and asked, “What did you do to make G so smart?”

Rigid Thinking Returns

Generally, when it comes to parenting I find myself working around G’s needs.  I wouldn’t say I’m flexible because I find comfort and security in routine just as much as G does, so there is little variation from day to day.  But if he needs to do things in a certain way or perform some sort of non-functional ritual to feel more secure, I usually roll with it.  I find it is more effective to gradually encourage flexibility over a period of time than it is to forbid him from doing it his way.

However, I’ve found there are limits to how much I’m willing to give in.  We have less than 30 days to go until our trip to the Winter Olympics and we’re spending time each week learning about the events we’re attending.  One of the events is bobsledding.  Our research has shown that  the technical name of the sport is Bobsleigh and that is the name G uses.  He also insists that everyone in the house uses that name.  And I just can’t do it.  I’m an avid fan of the Olympics, some of my earliest memories are cheering for USA to beat the USSR, and I’ve always called it Bobsledding.  I refuse to change and it is driving G nuts.  His insistence that it be called Bobsleigh is driving me nuts.  We’re both locked into our perspectives and neither of us is willing to give. 

DH is ready to tear out what little hair he has left.  Or maybe it is more precise to say he is ready to stuff us both in a bobsled/sleigh and shoot us down the mountain just to get some peace and quiet.

Progress

Today was the first day back after the three day weekend where we had a house full of guests.  G dealt with disrupted routines, playing with and getting along with children both his age and younger, and lots of general activity with little down time.  Our company left late last night and today was ski-pe, which means extra steps to getting ready for school.  We also woke up to snow which means the trip to school is a bit slower.  In essence, everything worked to slow us down today.

This is a problem because if a child is more than 5 minutes late to school on ski-pe day, they miss the bus and do not get to participate.  Instead, they hang out with the other kids that miss the bus in a study hall.  When I realized how late we were running, I started to stress over how G would handle missing the bus.  I coached him on racing to put on his coat as soon as I parked the car.  I had him grab his lunch and helmet and then had him run to his classroom.  I turned in his skis and boots to the organizers then turned around to find G behind me, confused about where he was supposed to go.  I snapped at him to get to his classroom and we raced up the stairs and down the hall.  I got him to his class with maybe 30 seconds to spare and was able to take a couple minutes to get the rest of his gear on him.

The really amazing thing is that G handled this chaos wonderfully.  He didn’t get fussy, get stubborn or melt down – even after I snapped which is usually a sure-fire trigger.  He understood the importance of not dawdling and did his best to do what he needed to do as quickly as he could.  Getting a little confused about heading to his classroom, in an environment where there were parents who are normally not present heading every which direction was as bad as it got.  As soon as I reminded him of his task, he was back to getting it accomplished.

I worry there might be a delayed reaction/meltdown, but he’s with the adaptive sports volunteers who can handle it.  But I’m also hopeful that there won’t be any problems.  I’m noticing lately that G has really matured from where he was one or two years ago.  He is doing so much better at being flexible and handling changes in his routine.  He is communicating so much more effectively now.  We still have stumbles, but to compare where we were as a family a year ago to where we are now just amazes me.  It gives me so much hope for G’s future.

Scouting

On a couple different occasions, G expressed interest in the boy scouts – one of his classmates is a scout and comes to school on meeting day wearing his uniform shirt.  I’m always looking for structured social opportunities where his peers can get to know him better and scouts seems like it would be a perfect fit for G.  We held off at the beginning of the school year because I didn’t want to overwhelm G, preferring to focus on getting through the first rough months of the school year.  We’re also very cautious about after school activities because he needs his down time after getting through the day.  But after discussing things with the scout leader we decided to give this a try.

A couple days ago, DH picked him up from school and told him they were going to G’s first cub scout meeting.  G was so excited.  (we didn’t tell G ahead of time to make sure he didn’t get anxious and worked up)  At the meeting, DH said G was very focused and that he was hanging over the other kids shoulders to read their handbooks.  When he got his own handbook, he started reading it immediately.  In the car on the way home, G said, “I can’t believe I’m a cub scout.  It’s so cool that I’m a cub scout.”  At dinner, he was incredibly animated and told me all about the meeting.  He volunteered the information – I didn’t have to interrogate him.  That is huge!  That night, he stayed up too late reading his handbook and keeps saying he can’t wait for his next meeting.  It is so precious!  He’s so cute about this I want to hug him and squeeze him and call him George.

Feeling Better

I spent the morning while G was in school wallowing in my bad feelings.  Around noon, I switched to pampering mode.  I took a bubble bath with fancy bath salts, used a clay face mask, put cool pads on my eyes and zoned out for an hour.  When I was finished, I felt better again.  I also spoke with G’s teacher and made sure he still had an aide on the playground who was looking out for him.  But I’m pretty sure it was the bath that helped.