Wednesday, September 29, 2010

What Is The Baby Looking At In This Picture?

It is 10:18 p.m. and both boys are in bed.  One of them is even sleeping!  Am I dreaming?  Well, I just pinched myself and although I'm slightly irritated at the force I used, I came to the conclusion that I am indeed awake. Since I have a few moments to spare, it's BLOG TIME!!!

Hello Aspierations friends!

Tonight's blog will not be "Kicked In The Shins - Part 2".  I am relieved.  Although if you read that last blog, I made a couple typos and mistakes so I went back a few minutes ago to correct them.  If there are more there, please don't let me know.  I confess this to you because I am a bit of a  an annoyingly insane perfectionist when it comes to trying to get things in my blog just right.  It's one of those good habit / bad habit kinda things.  When I was temping during college summers, I could put my analytical skills to use. I was hired to proofread HR manuals and employee training documents at the corporate office of an employment agency one summer and it was easy money.  Ever notice the first four letters in analytical are anal?

Lately I've told myself to go raw, let it all hang out, blog like a wild woman and then proofread later or do something really daring and just put it out there as is.  That way I won't get caught up in the minutiae and take an hour writing something which could have taken me ten minutes.

The thing is that when I go back to my blogs to read comments from my Aspierations buddies, it really irks me if I see that I made a typo or word mistake or left something out or spaced out on something. I'm embarrassed and I have to stop what I am doing and correct it.  Last time I checked, the grammar police had not shown up at my door to arrest me but wouldn't that be an interesting lock up?

You would think with all the organizational tendencies I have in my head and in my writing, my desk and surrounding work area would be the epitome of neatness. HA!  Our house is presentable on the rare occasions we have guests but it has definitely got a lived in style.  It also has Molly Maids who come once every other week.  Sometimes I wonder if I am less of a Mom because on top of everything else I've got going on with the family and business, I'm not a domestic goddess and Stepford Wife too.  I know it seems really silly because there have to be priorities and something has got to give but I really want to be a good role model for my children and teach them strong life skills.

I guess part of the reason I question my abilities is that my Mom & Dad's home is as immaculate today as it was when they purchased it 39 years ago!  My Mom and Dad do an amazing job with it and my Mom has always kept the place sparkling, except of course when I lived there.  I know she loves me very much but during my teen years, I think she thought my unkempt room was a deliberate attempt at disrespect. Love you, Mom if you're out there!  It was just me being messy!

When my parents adopted me, someone from up above really thought they needed a challenge.  Mini Taz, the Picky Eating Queen vs. the Mom Extraordinaire, the Home Maintenance Machine!


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This wasn't really the way I had intended my blog to go tonight.  I actually had planned to talk about our weekly drive from Vancouver, WA to Beaverton, OR for Ryan to participate in an Autism & Communications Research Study at the Oregon Health & Science University.  Will you stay with me if I make a transition?  Awesome!  That's one of you!  (But just the one I want!!!)

We've been driving Ryan back and forth to this study in Oregon for about a month and a half now.  It's about an hour there, about 1 1/2 - 2 hours for the testing and research and when there's not traffic, we can make it home in about 45 minutes.

We had been going on Wednesdays and leaving mid-morning.  Today his appointment was at 9:00 a.m.  As I mentioned in an earlier blog this week, Ryan has not been sleeping well lately and when Ryan doesn't sleep well, the rest of the family is thrown off as well.  As for me, I've been having a string of nightmares lately.  Something about the Grammar Police coming to take me to lock-up and throwing away the key.

Not really... but I have been having nightmares and so when Ryan wanted to put in a Teletubbies DVD for the car ride to Oregon this morning, I realized being awake wasn't particularly an improvement.

Tinky Winky, Dipsy (or is that Tipsy?), La La, Po, Teletubbies, Teletubbies, Say HELLO! Eh-Oh!

I'm laughing now because I realize that if I'm able to get these inane lyrics out of my head and onto my blog, maybe they will transfer into someone else's head and I can share the wealth.  That is very socially inappropriate behavior and if Justin and Ryan were up right now, they'd be laughing right along with me.  It may not just be the Grammar Police who will be knocking on my door if I keep this up!

Sorry...  It could have been worse though.  I could have shared a YouTube video with you!
Hmmm... maybe I did?  Quick! Scroll below!!!!






Just Kidding!  What kind of friend would I be if I did that!?

Okay... immaturity break over.  Time to act like an adult.  It does feel good to laugh though.  Love those happy endorphins!  When was the last time you had a good laugh or gave someone a great giggle? If you're ticklish, that's one way to do it, although it's kind of hard to tickle oneself effectively although I've watched my youngest try!

Reading my blog:  Justin's Middle School Orientation Part 2 - Lots of Laughs is another option.
Or.... maybe you'll find what I say below to be a bit humorous.  We'll see.

So.... after driving from Vancouver to Beaverton, listening to whatchamacallit and forgetting my water bottle (I drink a TON of water), we got to OSHU a couple minutes after 9:00 a.m.  I really loathe being late but we got caught in some traffic and as we sat bumper to bumper, I reminded myself that as much as I missed California, I did not miss the Silicon Valley commute.

In addition to forgetting my water bottle, we also neglected to bring Ryan's weighted vest.  He's never worn it before for the research study but because it was an earlier session and Ryan has a lot of early morning wild body and sillies, it could have come in handy.  Today definitely would have been a day to have it.

The researcher who worked with him today had spent time with Ryan last week and today's testing involved him watching and listening to an animated story on a computer and then 30 minutes later seeing what he could recall of that story.  Well, I personally know that if Ryan is focused on watching something, he has an incredible memory.  Whether or not he's able to verbalize it in a test setting when he's feeling out of sync and silly is another thing altogether.

There is a waiting room for the parents to sit in while Ryan does his thing.  He's taped (video and audio) and the room he was testing in was kitty-corner to ours.  Usually we can't hear him.  Today we could!

Come on man, sing it with me!
WILD THING, you make my heart sing,
You make everything
GROOVY
Wild Thing!!

That was for you Jimi Hendrix fans out there! Anyone? You in the back? I see you! Don't be shy with me!

Speaking of groovy, has anyone seen Mrs. Brady (Florence Henderson) performing this season on Dancing With The Stars?  It's mainly background noise around here but go, Mrs. Brady, go! Get your GROOVE on....

ERRRRRRRRRRRRRRRRRRRRRRRRRHHHH!!  The Tangent Police have just pulled up, knocked over the wimpy Grammar Policeman with a baton and yanked me away to tangent lockdown!  Save me!!!!

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Okay, no-one out there attempted a rescue.  I am so disappointed.  Guess I'll have to continue this blog from my cell!

So as I was alluding to, we could hear Ryan through the walls and he was being very goofy and silly. I have no idea where he gets it from.

A short time later, the researcher comes in with one of those telling smiles on her face and politely remarks that Ryan is "just a little off" today.  Perhaps he needed a little break and snack before they started up again.

This was one of those moments when I smiled politely and looked concerned but hey... this is a research study on autism and communication and it would honestly be a disservice to their study if Ryan was always on his game.  They know he's a bright little guy but it's important they see his challenges too.  We live with him around the clock and know they only get a small picture and experience with him.

Fortunately, they have NOT had the experience of being kicked in the shins.  We can keep that special bonus for Mom and not share that one again!

The researcher is truly a nice person and she asked if one of us might come in for the rest of the study to help provide Ryan with a bit of stability.  We've been through 6 of these sessions so far and this was the first time either of us had been invited back and so I jumped at the chance.  Ryan led the way from the waiting room to the testing room and when we got into the room, he sat at a small table with a computer and the researcher sat next to him where there was another table with a laptop.  Nearby was the video camera recording the session and I sat about 12 feet away from Ryan and observed.

In the beginning, he appeared to be focused and doing well.  My presence there did have a calming effect and he blazed through a lot of the questions.  I noticed while he was answering the questions that he would alternate between standing, sitting and moving around.  He didn't make much eye contact but he smiled and laughed a lot and although I didn't know the parameters of the testing, he gave some pretty intricate answers to what I thought were some basic questions.

Then he decided to show off for Mom and get goofy.  He started answering "I don't know" to questions he did know (he does this at home a lot) and when prompted for follow-up, he would use some of his favorite silly made up words like stainers, ainers, eenis and.... what was that?  ANUS? (I know I didn't hear that right...  okay, I know I did but I'll pretend I didn't.)

And in one of the final questions of the day...

Question: "What is the baby looking at in this picture?"  (Cue to what is probably a moon in the sky.)
Answer: (In a gleefully LOUD voice!)  Your ANUS.  (I bit my tongue and considered kicking myself in the shins not to laugh.)

It's a good thing the researcher had a sense of humor and I'm sure the people reviewing the videotape will get a good chuckle as well.  Apparently before I had joined into the fun, Ryan had been saying "Anus" to questions he didn't seem to know the answer to.

His brother is into astronomy...  Ryan, well... he likes the word "Anus".  Guess what his favorite planet is???

Hope you have a great rest of your day, Aspierations friends!

Let me know what you thought of my blog if you are so inclined!  I enjoy hearing your feedback!  If you have any questions for me or there is any topic you'd like me to write about, please let me know!  I need to do my penance for trying to get those Teletubbies song lyrics in your head...

May you have love in your life.  May you have laughter.
May you have your Friendly Aspierations Blogger,
Karen

Tuesday, September 28, 2010

Kicked In The Shins - Not the Way to End the Day!

Aspierations Friends, I have a confession to make!

Tonight I got kicked in the shins by a wannabe Ninja!

It HURT!

A LOT!

Still does....

Thank goodness he didn't have steel-toed shoes!

Our story begins with the best of all intentions.  It was shortly before 7:00 p.m. and our four year old son, Ryan wanted to go for a family walk.  I was game but no-one else in the family wanted to go so I told him that at 7:00 p.m. we could take our walk together.  My little exercise partner was very happy and I was too. I'm trying to get fun buns for summer.  (Yes, I know.  Summer just passed.  I'm starting early, okay?)

Somewhere along the way, Ryan got distracted with Google Earth on the iPad and I got caught up in work emails so it wasn't until 7:22 p.m. that we headed out the door.  That was okay though because 22 is Ryan's 2nd favorite number and if you add 7 + 2 + 2 together, that's how old his brother Justin will turn on his birthday on Sunday and if you're not following the logic, don't worry.  We're a numbers crew of two, Ry and I.  Number twins power, ACTIVATE! (If you get that reference, let me know. I WONDER if anyone will!)

As we headed out the door, I noticed it was already starting to get dark so I laid out the rules.

#1:  No running away from Mom. (Ryan has been a bolter for the past 2 years and although it's getting a little better so that he doesn't run out of the house completely nude when it's raining and Mom is in a towel, we have a lot of work left to do.)

#2: We hold hands when we cross the street and in places where it is dark.


#3: When we cross the street, we look left, right and then left again and only if it is safe without cars do we go.


#4: No putting leaves, rocks, slugs, worms, ear jam, boogers or any other potentially tasty treats in your mouth.  No offering the former delights to Mom.  She's full.  She already ate dinner.


Ryan said he was happy with "4 rules because he is 4" and since he was good with the rules, I donned my cautiously optimistic smile, comfortable shorts (just in case I needed to break into a sprint) and we were off!  I asked where he would like to walk and he chose our nearby elementary school which is about three and a half blocks away depending on how you measure.  They just added new playground equipment at the beginning of the school year and Ryan wanted to swing, spin and slide.  Sensory Integration Therapy at bargain prices!

Okay, I told my little guy I could hang with that too, but before we headed there, we needed to add another rule.   This did not please him because there should only be 4 rules because he is 4 but I told him it was a BONUS rule and since BONUS is a magically golden get-out-of-jail-free word in our household, he gently acquiesced.

Rule #5: We can play at the playground for 30 minutes but when Mom says it is time to come home, you need to listen, follow rules and walk home nicely.  -- Admittedly, I knew I was pushing the envelope with this one but I thought since it was getting dark, it wouldn't be very crowded there, I could wear him out, he'd get tired, etcetera.

"Okay, Mommy.  I'll listen.  Let's go!"

So we were off and my little guy was a real angel all the way to the school.  (Perhaps this was a sign that some sort of cosmic balance needed to come into play but I was having none of that stuff!)  He held hands with me the entire way.  We sang silly songs. We talked about school, his new tricycle, GPS coordinates for the neighborhood, weather, street signs, maps and cars.  It was a great bonding time and by the time we got to the school, I felt really great as a Mom and proud of my son for all the strides he was making.

When we got onto the school grounds and near the play area, I even released his hand a little early so that he could gleefully run to the playground equipment and climb, swing, spin and slide to his heart's delight!

This went very well.  We were having a grand old time and as I envisioned wearing him out a bit, walking home hand in hand with more bonding time and delighting in the thought of both he and I getting a solid night's sleep, I fantasized about my Mom of the Year Minute trophy and how it would look on my desk next to the flowers Aspierations blog visitors would be sending my way for my supreme Mommy skills!  (Yeah, I know. You don't have to say it.  Chocolate, Orbit Gum and a HUGE soft, plush, cuddly tiger would be much better gifts to send!  Plus the tiger would be cuddly and soft to snuggle with and would last longer...)

Ryan has very strong climbing skills and although this impresses me, it also scares me because the boy also seems to have very little fear of heights or injury.  So far (knock on wood), he has not broken a bone yet but very few days go by without some sort of new bruise he obtained at school recess.  I recall when I was a child that I used to do a lot of climbing and sliding too.  I'm not sure how much fear of injury I initially had but there wasn't a year between age 4 and 21 that I didn't twist an ankle or knee at least once.

Things were going along very well at the playground and we were checking out the new rope climbing area when three brothers came by.  I'm not the best with estimating age but I would guess based on my own boys' ages that they were around 12, 9 and 7.  The youngest one was dressed like a Ninja.
My immediate thought in watching him was wondering if he was an Aspie or a kid who had just gotten his Halloween costume early and wanted to wear it to the playground.  Perhaps both? Observing his mannerisms and listening to his speech patterns, my guess was that he is somewhere on the spectrum.  I'm not a doctor and I know this may seem strange to some that don't get it, but I am noticing that I have a radar for fellow spectrum travelers. Not only do I tend to gravitate in my life toward people who might be a bit quirky (I say that with love) but people who are quirky tend to gravitate toward me.  That is the topic of another blog though.

As I was observing the brothers and also watching Ryan, I noticed Ryan and the Ninja becoming very aware of each other.  They smiled at each other. Ryan even tried imitating a few mannerisms, paying ode to the other boy. Ryan was a wannabe Ninja and with his speed and stealth-like moves, he played a good role. The Ninja was pretty much ignoring everyone else.

This was happening while the oldest brother, the sports enthusiast of the family was trying to get his brothers involved playing football.  None of them wanted to play so the oldest brother created his own game which I called, "throw the ball at his other brothers and try to knock them off the playground equipment."  The middle brother kind of got into it and was dodging the ball.  The Ninja was ignoring it and as the ball would hit his body, he'd just let it bounce off.  I wanted to say something because I didn't think that was particularly cool but the Dad (I presume) was nearby and knew what was going on and didn't seem to care.

Of course, Ryan thought this game might be one HE should get involved with so he darted from me and went over to the oldest brother and told him that it was now HIS TURN.  At this point, my Mommy sense told me that it would be a good time to wind things down and start heading on home so I started Ryan's transition time and told him we had 5 more minutes and 2 more slides.  He ran away from the older child and starting climbing the ladder to the slide.  I was very pleased.  (Too pleased, I suppose...)

So as Ryan gets to the top of the ladder, he looks over at the Ninja and WHAM, the Ninja gets hit in the face with the football.  He starts crying.  I ask if he needs help and he shakes his head. I look to his father who is a little distance away to see if he'll step in and the oldest brother tells him to stop crying and suck it up.  (I suppose this might be common in families but my parenting experience has been with two spectrum boys and this family seemed to be 2 NT and 1 not so NT.)  The Ninja keeps crying.  The middle brother shows some empathy and asks his little brother to go sit on the bench.  He does.  That seems to help but the Ninja still cries. Loudly. Ryan is watching this with fascination.  "Boy is hurt.", "Why is boy crying?" "I don't like boy sad.", "I don't like boy SAD!"

Ryan definitely does not like others sad and it is very difficult for him to process without laughing first or lashing out or getting angry.  It makes him very uncomfortable.

From a distance, I could hear the father yell, "You're okay. Stop crying."  The boy kept crying. For goodness sakes, he just got HIT IN THE FACE with a football!  Check on him!  Show some sympathy.  At least say something to the oldest son who is now throwing the football again at the middle brother.  Believe me, I was pissed but soon, I had my own little situation brewing.

Ryan was now very revved up.  He did not want to take 5 minutes.  He did not want to go home after two slides.  He wanted the Ninja to stop crying.  "Boy is sad!"  I picked Ryan up to carry him away from the situation and he punched me in the spine.  I almost dropped him but we made it another few feet and then he started whaling on me again.  I put him down on the ground, sat down with him, held him so he wouldn't bolt, looked him in the eyes and tried talking very calmly.  It wasn't working.  Regrettably, I knew he was orbiting into meltdown mode and it was not going to be pretty.  I would speculate that families two blocks over were able to hear what transpired.

Moms and Dads of spectrum kiddos, you've been there, haven't you?  The meltdowns... man, they can go from 0 - 60 in an instant.  I usually have some really good tools I use but sometimes none of it works and you just have to ride the wave and hope that when it comes crashing down that another one is not right behind it.

As I heard him wailing and screaming about the Ninja being sad and that Ryan's playtime was NOT over and that my Rule #5 was a VERY BAD rule and that he HATED that rule, I realized that my Mom of the Minute trophy fantasy was shattered into oblivion and that 1-800-CuddlyStuffedTigers would not be making a delivery to my home soon.

Eventually, Ryan calmed.  It took a song about a Ryan-potamus to do it and when we both got up from the ground, tears streaming down both his cheeks and mine, we hugged and we kissed.

Then he looked me squarely in the eye and kicked me squarely in both shins.  He was still upset that the Ninja was sad and it was something I guess he needed to do.  We'll be working on curtailing THAT behavior tomorrow.

"Rule #5 was a BAD rule, Mommy but I LOVE YOU!"



And so the story ends....
And tomorrow is another day....

Thanks for stopping by my blog, Aspierations friends!
Karen

Monday, September 27, 2010

Birthday Parties and Kiddos with Autism and/or Aspergers

Hello there, Aspierations Friends!

Justin is turning 11 on Sunday!  To celebrate, we're having a birthday party for him and a group of his friends at Chuck E Cheese.  The group will include a healthy selection of neurotypical rowdy boys as well as children with Asperger's, kiddos with Autism and youth with Sensory Processing Disorder. There will be pizza, cake, fruit punch, video games, singing, acting goofy, acting Tigger (sorry, couldn't resist) and likely a heckuva lot of noise.  There will also be LOTS of fun!

You may have wondered, Karen Krejcha, Aspierations girlfriend, what on EARTH are you contemplating?  Your two boys are on the autism spectrum!  Don't you realize there are lights, noise, food with gluten, drinks with sugar and artificial sweetener, potential chaos and mayhem?  Don't you realize YOU'RE an Aspie too and can get socially anxious meeting new people?  Doesn't a nice quiet party with classical music, bridge and crudites sound much better?  Absolutely NOT!

What I'm thinking is that we asked Justin where he wanted to go for his birthday party this year and he said, "I want to go to Chuck E Cheese. I really like it there."  Well, alrighty then, let's make this happen and get this party started!



Years ago when I was a child (get out your fingers and toes and start counting), Asperger's was not a diagnosis option and it was pretty rare in the area where I grew up, to know of a child with an autism diagnosis.  Of course it didn't mean that these children weren't around because I definitely remember quirky kids growing up (myself included), it just meant that no one generally was "labeled".  Birthday parties still happened and if I recall correctly, they still happened at pizza places, ice cream parlours, bowling centers, miniature golf courses and entertainment places that generally had sugary drinks, sugary cake, noise, bells, whistles and more!

Farrell's at 1314 S. Mary Avenue in Sunnyvale, CA was an awesome old-fashioned ice cream parlour where birthday parties consisted of treats like the Zoo, the Hot Fudge Volcano (my favorite), the Pig's Trough (if you felt like being a real oinker and could eat it all by yourself, I think it was free) and employees running around singing and carrying ice cream masterpieces on big stretchers.  There were flashing lights, lots of noise and also a big candy shop area with huge lollipops and jawbreakers.  There was a fortune teller Zoltar type machine. There was also this Romance Fortune Teller sort of game where you put in some change and squeezed the hand while flashing lights went up and down and then stopped telling you how hot or cold you were as a romantic interest.  For the record, I think I was Sizzling!  Just kidding... maybe.  I really don't remember.  (Or if I do, I'm not sharing!)



I miss Farrell's.... and I surely could use a big tasty Hot Fudge Volcano right now like I had on my 16th birthday but that's another blog.  Did any of you out there go to Farrell's?  If so, what were your memories? Wasn't that place awesome? (You can see the excited kid in me coming out even now!)

So before I went down memory lane and stirred up a major ice cream craving, my point was that when I was a kid, we went to birthday parties at places that definitely provided sensory overload but we all survived and they were generally lots of fun other than a possible tummy-ache from too much ice cream and a sugar high which my parents had the pleasure of dealing with.  Still, FUN memories and I don't want my sons to miss out on that experience.

Autism does not define me and it will not define my son's birthday party!!

Now don't think for a second that I'm being ignorant or foolish and am going to let my children or other birthday party attendees act like banshees or do anything that would hurt them.  I am all about making accommodations for children and adults on the autism spectrum and removing obstacles and I'll work with each and every parent and boundaries will be totally respected.  There will be people at the party who will not be eating the pizza and there will be those avoiding the cake and punch.  There may be some with headphones to cover their ears from loud noises.  We're bound to get a few looks but we'll look right back, flash a big smile and remark how cool it is that kids can have so much fun in one place.  And seriously... how about that big rat Mouse in the corner?  What's up with him?



If I can multi-task well enough, I will try to be keeping Ryan from going fruit-punch hog wild himself.  I have strategies. We'll see if they work.  I'm dreaming of Good Intentions.... (yeah, yeah, Vibrations too)

Okay, here is the feel good story that I spoke of in yesterday's blog....

It's pretty common in the autism community to hear of stories from Moms & Dads about how their son or daughter rarely if ever gets invited to a birthday party.  Usually this is a source of sadness for the parent and any child who has ever been picked last for a team game or has felt left out, knows the pain of being excluded.

Justin lived in California from 1999 up until early summer 2007 and in that time, he was never diagnosed as being on the spectrum.  He was invited to only one birthday party in his first eight years.  (Want to guess where?  Chuck E Cheese in San Jose.)  I did feel sadness about this but we lived in an area that really wasn't all that safe and the elementary school that he attended provided him the opportunity to play with a couple kids (always girls, interestingly enough) but socializing really wasn't his thing and he didn't seem to "miss" not going to birthday parties. (It certainly wasn't as if we brought it to his attention either.)

When we moved to Washington in summer 2007, we decided we wanted to throw Justin his first birthday party.  Not having a whole lot of experience with this (i.e. NONE), we decided since he was new to his school, we would invite his entire third grade class (boys and girls) to his party as well as a bunch of neighborhood boys and girls hoping maybe we could help him socialize and make a new friend or two.  The party was at Big Al's (not to be confused with Big Gals... another funny story I'll share sometime) which was a modern hip bowling center with a fairly extensive arcade and gaming area and really good pizza.  We figured inviting 28 kids that we'd maybe get 9 or 10.  After all, they didn't know Justin and half the invites were girls.  We ended up with 26 children and I think a bonus kid that was someone's cousin...

That whole experience in itself should be a blog!  Interestingly enough, one of the boys that was invited and who attended the party had an autism diagnosis.  This was before our boys had been diagnosed.   His parents were SO HAPPY he was included and explained to us about their son's autism and dietary restrictions.  I remember their son attending like it was yesterday... and using it as a learning lesson with Justin for teaching acceptance.  Little did I know...

Well here it is 3 parties later and that son will be attending Justin's party again this Sunday.  Although he and Justin have not ever really hung out outside of school, they have eaten together before at lunch and Justin stuck up for him on a couple occasions when other kids weren't being so nice.  I am so proud of my son.

It occurred to me as we were addressing the invitations last week that about half of the boys being invited were somewhere on the spectrum and the other half were schoolmates or friends made through Cub Scouts and Boy Scouts.  (This year we only invited 9 and with Justin and Ry that would be 11.  Eleven for his 11th! No girls this time... girls make Justin blush... which for now is PERFECTLY fine with me...)

There is a song from my Girl Scout days that goes, "Make new friends, but keep the old, one is silver and the other's gold."  This reminded me of that song because Justin is starting to develop new social connections but along the way, he is making to sure to keep his old relationships too.

There have been maybe 4 boys who have been over to our home in the past 3 years, 2 of them have been over more than once.  Those 2 were boys he became closer with because they were initially invited to his birthday party.  One boy was new in town and the other was a boy who he was in Cub Scouts with that is quite possibly a spectrum traveler but undiagnosed.  These two boys have made a HUGE difference in Justin's social life and I must say have impacted his vocabulary ("DUDE") as well.

Knowing that children on the autism spectrum don't often get invited to birthday parties, we asked Justin if there was anyone in his SCIP class or core classes that he was getting to know that he'd like to invite.  Justin indicated that he had made friends with a boy in SCIP and wanted to include him.  He was very proud of including that boy's name on the list but was a bit worried that if giving the invitation to him at school, it would make its way home. (Paperwork, envelopes and books often disappear into a big black hole on the way from school to home in our household too...)

Well, the invitation made it and within just a few hours, we had an incredibly nice email from the boy's mother.  She had said that birthday invitations were few and far between for her son and that he was SO EXCITED to be able to attend.  Well, she and my husband exchanged a few additional emails and she's going to be there too and is looking forward to meeting us. (We invited parents to come as well in the hopes that maybe we can make a connection as well.  Now in theory that sounds great, but I know I'll be incredibly nervous the night before.  It's my son's birthday though, so I'm telling myself all will be copasetic, even if I have to wear my Aspie mask for part of the event!)

Of the 9 invitations sent out, you want to know who responded first saying that they and their sons wanted to come to a gluten-filled, carb crazy, sugary insane, sensory overload, video game noisy, gigantic Rat (err... I'm sorry, "Mouse") influenced amusement center hosted by someone named Chuck E Cheese?  DING DING! You guessed it!  Future Aspierations boys of America!  Can we give a shout out!  Holllllllla!   :-)

We will take care of the boys.  We will do our best to talk with each and get to know them and their parents if the situation presents itself.  If there are limitations, we will respect them.  If there are challenges, we'll overcome them.  We hope to give every single one of those boys an awesome time "Where A Kid Can Be A Kid".  Because that's what our boys are... KIDS!

For the record, I really hope Ryan will keep his clothes on and won't run around stealing other people's sodas this year.  But that's for another blog...



Let YOUR light shine, let your SON or DAUGHTER'S light shine!
Let them be a KID!  They'll have plenty of years where they'll be expected to be an adult.

And you know what?  The kid in me will probably come out on Sunday as well... if I don't freak out first from realizing what kind of social situation I've put myself into.  Wish me luck!

Sometimes you just need to build character...
Hopefully mine will be something cuter than a RAT giant MOUSE!  I know, how about a TIGER?

Until next time,
TIGER Karen, your friendly Aspierations blogger

Sunday, September 26, 2010

Less than 3 months until Christmas - 2 months until Thanksgiving



Hi everyone!

Today is Sunday, September 26th and that means tonight that both "The Amazing Race" and "Undercover Boss" premiered, two shows that our family likes to watch.  Oddly enough, it is our four year old son, Ryan who is really jazzed up about "Undercover Boss".  He runs around the house and calls himself "Undercover Baba".  Part of the appeal is that he likes to spend so much time playing hide and seek undercovers.  That's a new show too ("Undercovers") but I'm not letting him watch that.  :-)

I had a blog already to go yesterday in my head.  For most it may seem silly or odd but I really like the number 25 and yesterday was September 25th so I was ready to give a shout out.  In fact, I dedicated a whole blog posting to the number 25 on July 25th and although many of you probably wonder what on earth I could find to write about, I came up with 25 connections or facts about the number 25 in 25 minutes and 25 seconds.  I posted the blog at 10:25 p.m and commented at 11:25 p.m. (also my birthdate, no coincidence).

It was a fun blog for me to write and so if you have 2.5 minutes to spare, go check it out when you're done with this one.  I'm even providing you an easy link because I'm a nice person.

Yeah, I know. I'm also a whimsical, quirky and perhaps eccentric kinda gal, some might even say occasionally intriguing.  Of course, one of my recent Aspierations visitors called me a whackbrain.  Somehow I doubt that was a compliment but I thanked him or her anyway.  Why not at least show good manners?   :-)

Anyway, before I digressed, I was saying that I was going to write a blog yesterday mentioning that being September 25th, it was three months away from Christmas and also two months away from Thanksgiving (and my birthday) and one month away from October 25th, the birthday of an awesome, important and inspirational person from my life's journey who I'll sing to even though he'll never hear it.

Three months until Christmas.... YIKES!  In the retail industry, whether you're brick and mortar or like Count Your Beans, "click and order", the holiday shopping season is the biggest time of the year.  Sales from October - December often carry our business through the slower months of January - March.  If you're new to my blog or visit sporadically, I founded an online business when I left the Ladies Pro Bowlers Tour in late 1998 and became pregnant with Justin in early 1999.  We started off selling Beanie Babies and gifts (ergo part of the reason for the name "Count Your Beans") and at the time it was just a little after the peak of the Beanie Babies heyday.

(I better watch out or I'm going to break into a blog about the "Count Your Beans" company story.  Someone help me off the tangent train!!)

Okay, so Beanie Babies had very little profit margin and giftware had more. We attended the San Francisco International Gift Fair in 2009 and soon realized that dolls and bears were popular collectibles and we could build a business niche around selling these items to customers who would return to us again and again once we could gain their loyalty.

 (I'm doing it again, aren't I?  I PROMISE I'm trying to give the really really condensed version.  Sometimes I forget that even though I type 120+ wpm and can get it out quickly that when I finally post, it's practically a novella in length.  One thing about becoming a regular Aspierations blog reader is that you'll pick up on your reading speed!  If not, I can give you some hints!)

So we hooked ourselves up with a variety of top vendors in the industry, started purchasing wholesale and selling online retail at eBay, Yahoo and through our own website and what started out as a part-time income with me working the business from home and John working full time outside the home eventually became a full 80 hour/week enterprise where after John was laid off from Lucent Technologies in early 2002, he never had to go back to work for anyone else.

Now I'm HIS undercover BOSS!  (I can hear the groans.....)

Where was my point?  Ah, yes.  Business built steadily from 1999 - 2007 and then we moved from CA to WA and got our first home, first mortgage and then KABOOM, lots of stuff happened with the economy, the housing market, health issues in our own lives and many manufacturers we worked with went out of business or started competing with their own customers.  I'm sure many people have lots of similar kinds of stories in their lives so I'm not complaining, just telling it like it is.  I try to be optimistic but the last few years have been challenging financially, emotionally and well... when our boys were diagnosed in 2008 with Autism Spectrum Disorder and Asperger's respectively,   all that other stuff to do with money and business, it was so inconsequential compared to the maternal love I had for my children and wanting to see them happy, healthy and having the best care and treatments we could afford.

It's a juggling act because my boys need me, my husband needs me, the business needs me, apparently the mortgage company and credit card companies need me too.  So at this time of year when there is already lots of stuff on the plate, I have to dedicate myself even moreso to busting my buns and making absolutely sure that the Christmas selling season for Count Your Beans is going to be a strong one so that we can keep the house, keep the schools, keep the routine and keep the forward momentum for our sons.

Because Aspierations friends... my son Justin needs to be in his SCIP program at middle school.  He just made a NEW friend.  What parent of an AS kiddo doesn't LOVE finding that out?  I'll tell you the story tomorrow.  My son Ryan... he needs to be at the special education preschool with his amazing teacher, teacher's aide and staff so that he can be ready to transition to Kindergarten at our local elementary school next year that has their own SCIP program for the little guys.

My husband John needs to continue to have the opportunity here to be an Assistant Boy Scout Leader, motivating boys and mentoring Justin like he did as a Den Leader all throughout Cub Scouts.  Incidentally, John started a new group on Facebook recently called "Autism and Scouting".  It's for Boy Scouts, Cub Scouts, Girl Scouts, Brownies, Royal Rangers, other types of Scouts and anyone on the spectrum or related to children with Autism or Aspergers.  Nothing else of its kind was out there which surprised both of us so he stepped up to the plate and is making it happen.  I encourage him.

What do I want?  I need to have faith in myself and not just in my plan for me, but to have trust and faith in God's plan for me.  Trust... I am a very trusting individual and although it's a strong attribute to have, it has also been a naive downfall of mine many times in my life.  I have trusted the wrong people.  I have forgiven and trusted again.  Sometimes I look up naive in the dictionary and see a picture of myself by the definition!

Trust, accountability, honesty... all these things are very important to most but especially important and critical with an Aspie.  If I give my word, you can know I will bust my butt to make it gold. If you give your word to me, I'll believe you until you give me a reason not to.  Then I'll likely forgive you and trust you again, because you, my friend are like me.  We're fallible.  We slip.  We're misguided.  We're confused.  But don't play me for a fool and continually betray me because that... well, it's just not right and not only do I deserve better but so do you.


What else do I want?  Aspierations... not just this blog, but a website, a book, speaking engagements, something bigger... I see that all coming in time.  I see it big.  I see many of you a part of it if you want to be...  If only I could figure out a way to sneak bonus hours into my day, maybe I could speed up the timetable to match my aspirations.  God's time... my time... his plan... my plan... I've been blessed with so much in my life.  One of these days I'll figure out how to get our plans on the same drawing board!  If you've found out the secret, let me know.

So yes, it's three months until Christmas and it's crunch time for us financially and business wise at Count Your Beans.  But at Aspierations... it's hope and optimism, maybe a little naive idealism but more importantly, trust and faith.  Each day is a new story, another step down the path looking to eat a bit from the tree of wisdom before I carry on.   I guess I need to watch out for snakes taunting me with apples along the way....

I have a feel good story for you on Monday about Justin and his upcoming birthday next Sunday!  We're having a party for him and you'll want to come back and hear what really touched my heart!

Wishing you the very best day and week,
Karen

Friday, September 24, 2010

Follow-Up To Stimming Blogs and An Aspie Girls Question



Good evening, Aspierations Pals!

My last two blog postings focused on stimming and self-calming behaviors. I was amazed at the number of responses I had to my first and second blogs.  Lots of different people chimed in and I just got done responding to all your comments.  I did respond to everyone, I promise!  It may have been out of order but you can use a good challenge, right? In some cases, I made individual posts to respond to you personally because Blogger only allows me so many characters to respond with.  (I think it's a subtle hint to be more concise and less prolix.)

http://aspierations.blogspot.com/2010/09/stimming-and-self-stimulating-behaviors.html  - Part One

http://aspierations.blogspot.com/2010/09/part-2-stimming-and-self-soothing.html - Part Two


Anyway, I wanted to thank each and every one of you for your contributions, your insight, your compliments and your trust in me to feel comfortable enough to share what you are thinking and feeling. You help motivate me to write more and you help inspire me to step outside my comfort zone by engaging with you online.

It may seem trivial to some but most people with Aspergers or autism struggle with social contact and I am a card-carrying member of that bunch.  Your writing a quick comment, sharing of your life or even a word of encouragement on my blog is greatly appreciated.  When I call you Aspierations Friends, I mean that.  Think of me what you will (quirky isn't the worst thing I've been called) but I feel a calling to do this blog and build Aspierations into something that promotes awareness and acceptance and also inspires, empowers and motivates.

Sometimes (okay, almost daily) I wish I had some sort of mentor or life coach to help guide and direct me on a path to follow my dreams in a wise, healthy and financially secure way. I do believe in God and have faith that he's pointing me in the right direction; I just wish I had a little more insight into specifically how to turn my passion and potential into something tangible and not tangential while still being able to pay the bills each month.  I do feel that Aspierations (more than just this blog) is where I need to be making a difference. I want to make major contributions in life, I want to be a positive role-model for my children, I want to help others empower themselves to their own definition of happiness and success.  I have always lived the road less traveled but I'd love to take bigger journeys and braver risks but where, oh where, is my road-map or internal GPS system?  Where do I start my still Unwritten journey?  These are questions I ask myself every day as I make my way.

Regarding stimming, I had just a couple more things to say and I will be doing so below.  I received an email earlier from a loving but conflicted father who wanted to remain anonymous.  He asked questions of me that I think are relevant to the readers of this blog and with his permission, I am sharing both the questions and my response.

Question:  I have one daughter who is 9 and has an Aspergers diagnosis. I think my wife may have Aspergers too but is undiagnosed.  My daughter does a few of the stimming behaviors you mentioned, especially chewing her hair and biting her nails.  It embarrasses my wife to the point where she yells for her to stop. The thing is that my wife does the same thing. I pointed this out and she looked at me like I was an alien and accused me of blaming her for my daughter's behavior. I don't want to hurt my daughter's self-esteem and I don't want to piss off my wife. I took that Aspergers test you had on your website and come across neurotypical.  I am afraid of showing it to my wife but I want to her to get the help that she needs if she is an Aspie.  I also want her to stop yelling at our daughter for stimming.  If I understand you correctly, she may not always be able to control it or be aware of it?  Any suggestions?  Help?

Answer:  (Condensed)  Stimming can happen for a variety of reasons.  Often the behavior is self-calming and soothing.  If a child is seeking sensory input, it can be self-stimulating and regulating.  Children and adults stim for many different reasons including but not limited to:  sensory overload, boredom, social anxiety and stress.  Sometimes it can also have a physical component where a child may have a stomachache or earache but not be able to verbalize their pain so they may do something like bang their head or rock.

I have noticed in personal observation with my boys that stimming is often exacerbated by diet, specifically processed foods, carbs and sugary drinks with artifically flavored coloring.  It can also be triggered in a heightened way by the child feeling sick, hungry or tired.

Some stims are considered more socially acceptable than others and it sounds like your wife may be a bit self-conscious about your daughter's and perhaps her own.  Knowing that your daughter has Asperger's, your wife might already worry about her being seen as "different" or "strange".  I suppose it could be vanity but from what you said, I would guess (and this is just my personal non-medical opinion, so please don't take any of this as set in stone) that she is worried that your daughter may draw unwanted negative attention to herself and may therefore be picked on or teased by kids and she wants to protect your daughter from that pain.  I don't know if your wife was ever made fun of as a girl but I know that I was and it stuck with me to this day.  The silver lining to having been teased is that it helped me develop greater empathy for those that are different and reaffirmed in my mind that I would teach inclusion and acceptance to my own children.

That isn't to say you want your child picked on.  What I'm saying is that you can't always be there to stop it and when it eventually happens as it does with neurotypical and autistic children alike, you can be there as a loving parent to pick up the pieces with empathy and understanding rather than critique and blaming.

Yelling at your child for stimming is something I would not recommend. I realize stimming can become extremely annoying, sometimes gross (don't ask me about feces smearing) and very distracting. Your kiddo needs you as a parent, a friend and someone safe to confide in.  She feels safe stimming around you and that's important because then you have the opportunity to engage in a little detective work to figure out if the stim is anxiety related, physically related, joy related or ????  If something is bothering her, then maybe you can help fix it (I know guys like to try and do that!!!), understand it better or help HER process it better. If she needs to be engaged because she is bored, you can go for a walk together and maybe have a heart-to-heart.  Girls on the spectrum are often very emotional, very impulsive gals.  Remember, that you and your wife were given this beautiful child as a gift from God and that you can help her flourish by regular encouragement and positive reinforcement.  Depending on the stim and its level of safety or social appropriateness, it may make sense to try and redirect your daughter's stimming behavior into an activity that meets her needs but doesn't ostracize her. Since she bites her nails, maybe get her a manicure set and a file and redirect her attention to making her nails pretty instead.  Chewing her hair?  Give her some gum or a hard candy to suck on instead. Remember, she may not even realize she is doing it so to embarrass her or make her feel bad by yelling at her is not going help your relationship.

I also want to point out without scaring you that sometimes increased stimming and withdrawl from social activities may be a sign of a bigger problem.  Asperger girls are often smart but very naive and are more likely to be victims of teasing, bullying and sexual abuse.  From my own personal experience, I can look back at my life and recognize how certain stimming behaviors became prevalent or exacerbated after specific incidents in my life.  It doesn't matter how brilliant your daughter may be, never underestimate how clueless she may be when it comes to things like the birds and the bees and trusting men.  I could fill a book...

It is apparent to me that you love your wife and daughter very much and want to get both the help they need. It sounds also that you'd like your wife to consider the possibility she might have Asperger's without being relegated to the doghouse.  :-)

I highly recommend that you buy the book "Aspergirls" by Rudy Simone, read it and encourage your wife to read it with you.  It is an amazing book about empowering females with Asperger syndrome and the term "Aspergirls" refers to females of all ages.  When I write my Aspierations book someday (soon!!!!), you will likely see a similar theme.  The book will help you understand your daughter better.  If your wife is on the spectrum, it will definitely help you understand your wife better.  If you have relatives involved in the care of your daughter, get them a copy too.  Females with Asperger's and autism present VERY differently than males and sometimes that presentation may make it appear that they are more clued in.  Many women out there live undiagnosed and it is often not until an Aspie woman has a child of her own that is diagnosed, that she gets her own diagnosis.  I lived many years getting by with memorized social scripts, mimicking and learning to mask myself to fit in.  Aspie girls can be great little actresses.



I'm not about tricking people however since you implied your wife might be a bit hesitant to look at her own life with the possibility of Asperger-colored glasses, I would suggest that you ask her to read the book together as a way to better understand and be more powerful advocates for your daughter. 

That much is certainly true and what good mom wouldn't want that?  Then once she starts reading the book, if she is a female spectrum traveler as well, I have a strong feeling that the words she reads will resonate.  If they do, feel free to send her to my blog afterwards and have her read:

Before I knew I was an Aspie, My Puzzle Piece Didn't Fit

The Outing of a Gal With Asperger's, What Did I Do?

and a poem I wrote:

Autism Does Not Define Me

Of course if she wants to take the Aspie test, she can do that too but I highly recommend you having her read "Aspergirls" first because that is much less threatening and if she happens to NOT be an Aspie, you're much less likely to be sleeping on the couch.

I'm always happy to answer any questions you have.  Now I'm not saying I'll know the answer but I'll always be happy to speak from personal experience.  I also have a gazillion reference links and am a Google Aspie-Bot so I can always try to direct you to someone who might be able to help.

*****  I went on a bit after that but it was more personally related and not as generally relevant to the readers here at Aspierations.  I hope that what I shared helped and I thank my anonymous male father friend who wrote in for giving me permission to share with you guys and gals. Maybe it will resonate with one of you too!

I just looked at the clock and realized that between blogging, answering emails and responding to follow-up comments, I've been on my sweet derriere for a long time.  I didn't notice it getting any smaller in the process so it's time to get up and get a little exercise.

Hope to see you guys and gals again!
Thanks for stopping by!

Make this weekend count!  
Karen

Thursday, September 23, 2010

Part 2: Stimming and Self Soothing Behaviors In Our Family

Hello Aspierations Blog Buddies!


I had intended to write last night but as it often happens, other life stuff got in the way.  Our youngest son Ryan has had a heck of a time falling asleep recently and so I have taken to serenading him to sleep with my own special version of lullaby time.  After I was done, I was ready to sleep myself!  


Tonight I'm going to do a follow-up to my blog post on Monday, September 20th, Stimming and Self Soothing Behaviors in Our Family - Part 1.  Thank you to those who commented and emailed and also those who didn't but stayed with my writing from beginning to end.  I always appreciate your support!


Stimming is certainly a topic which warrants interesting discussion.  If you did not read Part 1, I invite you to do so as what I am about to write will make it easier to put my perspective into context.


Tonight my focus revolves around the question I posed in my last blog:


In reference to stimming, is it possible that what some see as a stigma or odd behavior can actually be therapeutic?  

YES, YES, YES, YES!




Before I go ahead, let me say that the stuff I write below and in my blog in general is my opinion unless I have specifically referenced research and provided you with that information.

I am not a doctor.  I don't have a degree in autism research.  As a Mom of two kiddos on the spectrum and a fellow autism spectrum traveler who Googles her way through many days reading and researching about autism and Asperger's, maybe there should be some sort of honorary degree.  In all reality, I'm not looking for accolades, just strategies, tools, answers and support.  Well, maybe a trophy would be nice!

Here is my opinion from what I have gathered from my own life experience and from reading a wide variety of articles and opinions at various websites.



Going back to the basic definition of stimming, we recall that stimming is a repetitive body movement that self-stimulates one or more of the senses in a regulated manner.  


If I were to put that into layman's terms, I'd say that it is an action or actions (physical or verbal) done repetitively by a person that help stimulate or regulate the senses and may also help serve as a soothing, coping and/or focusing mechanism.  In other words, it calms and makes you feel good!


So I got to thinking after I was finished with my last blog that whether or not someone is diagnosed as having autism or Asperger's, we all have some sort of behaviors we do to help us cope with stress or anxiety or to give us a soothing calm, an adrenaline rush or an endorphin high.  


Some of these are considered bad or nervous habits.  Some probably aren't really given much consideration at all but when I give the list below, let me know if you or anyone you know identifies with any of these.  I'm keeping it G rated but I can think of others and sure you can too!


These deal with the senses and providing sensory input.  There are tons more!  What can you think of?


Tactile: twirling hair, drumming fingers on a table, playing with facial hair, scratching, clapping


Proprioceptive: cracking knuckles, teeth grinding, snuggling in quilts or blankets, jiggling or crossing legs, pacing


Auditory: humming or whistling, tapping a pencil or pen on a surface, snapping fingers


Taste: sucking on mints or hard candy, smoking, chewing on gum, pencils, pens, hair or jewelry


Smell: sniffing certain scents, wearing a certain perfume or cologne


Vestibular: Rocking in chairs, dancing, sliding, skating


Visual: blinking, gazing at fingers, staring at lights, lining up objects


I bet you're in there somewhere, right?  Here is what I think is the difference in societal norm.


The word "stimming" unfortunately has a stigma attached to it.  If you hear "stimming" you're likely to think it has a negative connotation or is associated with people who have a disability or who are participating in what would be considered an inappropriate social behavior.


But that being said, by recognized definition, stimming is a repetitive body movement that self-stimulates one or more of the senses in a regulated manner.  


So, by definition, don't we ALL technically participate in stimming in some form or another?  I say YES.  We're human beings.  We all have the need to regulate ourselves and we seek activities that bring us pleasure. 


In fact I would go so far as to say that many of the extra-curricular or leisure activities that people participate in are highly based in self-stimulation, self-regulating behaviors.  A few I can think of off the top of my head are video games, dancing and listening to or playing music.  Drumming would be a great one.  For the thrill seekers, there is bungee jumping and sky-diving and most X-games activities!  Some people jog or run to regulate.  There are whole industries built around these behaviors that are considered socially appropriate.  For that matter, there are industries built around the socially inappropriate as well but I won't go into that here!


What are your hobbies or special interests?  Why do you like them?  What do they bring to you? I bowled regularly from the time I was 4 until I was in my 30s.   I used to love playing tennis, softball and racquetball and when I was in my late teens through early 20s, I was a club dancing machine!  I still enjoy video games, singing and brain teasers.  Do or did these hobbies and sports help regulate me in some way?  Yes they did! 


So even though all of us, autistic, differently abled or not, have what are considered socially appropriate activities we do to try and provide ourselves with sensory input, some of us need more input than others in order to be able to focus and function in our daily lives.  Our level of what we need is much higher.


Some of us are often out of sync with our bodies and have more of an urge or need to stim than others.  We need to distract our brains from sensory overload and we do so by doing some sort of alternate behavior.  Some of these are easier for us to control than others.  Some we do and may not even be aware of unless someone brings it to our attention.


I think part of the reason why "stimming" has the negative connotation is that people associate it with behaviors which come across as more noticeably distractive, such as flapping hands, making loud noises out of place, rocking, slapping or banging one's head or touching body parts inappropriately.  With many people on the autism spectrum that stim, they may not always be self-aware or socially understand why their particular self-regulatory behavior might not be considered socially appropriate.


I think also that with many who have autism or other disabilities such as deafness or blindness, certain stimming happens as a reaction to a legitimate physical problem that the person does not have the capability to communicate in words.  It might be an ear infection or a tummy ache, bowel problems or a headache.  It could be depression, anxiety or fear. 


If our sons are stimming more than normal, we try and see what the catalyst might be to see if we need to seek additional medical attention or assist them with an emotional issue.  For example with Justin, he may be trying to focus on school and needs to block out other sensory input.  With Ryan, who toe walks when he is barefoot or spins, it may be he needs vestibular input like swinging or needs to wear a weighted vest.


*******************************************************************


June who commented on my last blog, astutely asked how do you tell the difference between a stimming motion or just a release of nervous tension or hyperness, so to speak?


There will often be overlap.  I would say though that most people would say that a socially inappropriate stimming motion is less easily controlled, happens in greater frequency and the person doing it may not be aware of it taking place.


I think in many cases it would be hard to tell the difference because motions that are a release of nervous tension are often motions which help calm, regulate or soothe us.  Technically, those motions are self-stimulating behaviors and therefore stims.  (At least that is how I look at it.)


BUT, I would say that most people looking at it from the perspective of the autism community would say that some stimming motions are not so easily controlled.  Stimming actions among autistic people have a wide variance in their severity and what might be considered socially appropriate.  


I guess I would pose the question back, is the person aware of his / her behavior and if so, can he / she control it?  If the person isn't aware, if it is brought to his / her attention, can it be redirected or controlled or does it continue to occur in a way which makes it seem as if the person stimming is oblivious to the action?


I think as children grow into adults that their behaviors done to release nervous tension (maybe shaking a leg, tapping a pencil on a desk, popping gum or stretching or letting out a primal scream) are things that they are more aware of.  When one is a child or teenager, they are less likely developmentally to be aware of why they are doing what they are doing.  They do it because it helps regulate them or because it feels good.  For example, a baby may suck his thumb or a child may cuddle with a blanket or special stuffed animal.


John and I had a discussion with Justin the other night about his stimming.  It was such an incredibly mature conversation.  He indicated that he was aware that he stimmed but often he did not realize he was stimming until he was redirected by a parent, teacher or aide.  Some of Justin's main stims that have shown up in a school environment include humming,  making noises and flicking hands and fingers.  Justin realizes that he does these things to help him focus or concentrate or just because it feels good.


I think a lot of us do what makes us feel good.  We crave the endorphin rush.  I know I do and when I don't get it I am way out of sync.  Serotonin and endorphins are natural neurotransmitters that can improve mood, dampen pain and regulate sleep.  Whether it be through exercise, eating certain foods or participating in certain activities which provide us with a natural release of this stuff, I believe we all seek it out in one form or another.  Hopefully we do it in legal and ethical ways.  We like to repeat what feels good.  


My opinion is that many stimming behaviors release serotonin and endorphins as well.  


Again, these are just my thoughts and opinions!  I'd love to hear yours!  Any mistakes are all mine and anything you disagree with is all yours!   :-)


By the way, if you're seeing weird line breaks or my blog looks different than normal, I apologize. It's just another round of Karen versus Blogger and next time I'm bringing in the big guns.  (Clint, Arnold, Jackie, Charles and sweet innocent me!)


I'll be talking about different stuff in my next blog but feel free to comment on this blog below!  I love your comments!


Y'all come back now, ya hear?


Letting My Light Shine,
Karen




Monday, September 20, 2010

Stimming and Self Soothing Behaviors In Our Family - Part 1


 

Hello Aspierations Blog Friends!

Tonight's blog primarily focuses on stimming.  If you're not sure what stimming is or if you're curious how it relates to our family's daily lives, please feel free to read on. 

My sons Ryan and Justin were diagnosed with Autism and Aspergers a little over two years ago.  If you've been to my blog before, chances are you know this already.  If you're new here, I mention it so that you can get to know a little about me and because even though I've done a tremendous amount of reading and research about Autism Spectrum Disorders over the past couple of years, I still consider myself an ongoing learner.  

As a parent, I am naturally concerned with providing the best care to my boys.  There are many different kinds of therapy available to children with autism.  Many of them are quite expensive, many of them require a large time commitment, many of them have questionable results. 

When assessing what kind of therapies to consider for our sons, we look at their individual needs and their individual obstacles and challenges.  We also look at their personality and individuality.  What makes them who they are?  What helps regulate them, calm them and help them become the best they can be?

Is it possible that what some see as a stigma or odd behavior can actually be therapeutic?

In our home, stimming is a common behavior that occurs in one form or another daily with each of our sons.  By basic definition, stimming is a repetitive body movement that self-stimulates one or more of the senses in a regulated manner. Although it is common with those on the autism spectrum, not everyone has stims that are as noticeable as another.  There are also people not on the autism spectrum who stim, although from what I've read, this is much less common. **UPDATE** - The more I read about stimming, the more I believe that almost all people stim to some degree. I think perhaps what the author of the article I read was referring to was stimming that was considered "negative" or not socially inappropriate.  (See my Part 2: Stimming and Self-Soothing Behaviors In Our Family when you're done with Part 1!)


http://aspierations.blogspot.com/2010/09/part-2-stimming-and-self-soothing.html

Stimming actions can be visual, auditory, tactile or vestibular. They can also incorporate taste and smell. Some of the more common stimming behaviors that are seen in those on the autism spectrum include body spinning, rocking, hand flapping, lining up toys or cars and repeating rote phrases. They are often self-soothing.

Here are some of the ones that we have observed our boys do either recently or over the past two years.  I share these with you to let you know that if your children exhibit any of these behaviors, you're not alone and if you'd like to discuss or give feedback on any of these behaviors, I welcome your comments in the Comments Section below or via email at lettingmylightshine@gmail.com.




Ryan (4 years, 4 months) - Autism Spectrum Disorder diagnosis 

Spinning - We first noticed this at about 18 months.  He did it a lot up until the time he was 3.  Multiple times each day he would stand and spin in circles for up to 5 minutes.  He still sometimes spins but not as often and for not as long. We've also noticed when we go to amusement parks, he gravitates toward the spinning rides. (These are the ones that would make me queasy. I love roller coasters but hate the rides that spin in circles.)

Bouncing and Crashing - Ryan is a child who very well may be an X-Games champion someday. He seems to have little fear, a very high tolerance for pain and loves to bounce, climb, crash and be in motion.  

Lining up cars and toys - I'm not sure exactly what age this started but it was well before 2 and it still continues to this day. Rather than engage in imaginative play ** with the cars he prefers lining them up.  The exception is when we have road mats for him to help him take his cars from place to place.  For the past few months, he has started to engage in wheeling the cars more often but given a choice, he still prefers to line up, sort and count his cars.  He has well over 200 and has memorized intricate details of almost all.  Cars are a favorite reward incentive for Ryan.


(**Correction: After reading a comment on my blog from Gavin, spending time on the floor playing with Ryan and rethinking Ryan's developing behaviors with cars, I do agree that it IS imaginative play to line up cars. Thank you so much to Gavin for his insight and for pointing out that this is a visual and mental stim!)




Opening and closing doors - This was a favorite activity from 2 - 3.  

Licking or mouthing objects - I believe this classifies as a stim.  Ryan is very oral.  He chews on ice, he chews on clothing, chewelry (chewable jewelry) and has a tendency to put non-food items in his mouth if not carefully watched.

Justin (10 years, 11 months) - Asperger's diagnosis with noted ADHD symptoms

Flapping Hands or Flicking Fingers - We started noticing this in late 3rd grade when Justin was 8.  It wasn't happening too often at first but it increased over time.  We noticed it a lot during 4th and 5th grade at home.  The teachers gave us feedback that it was happening a bit at school but that for the most part, it wasn't too noticeable.  

It seems to happen more often after Justin has been playing video games or programming video games and we are taking a break to do something different like exercise or go to an event.  We notice it during our family walks outside and this past Sunday, when standing next to Justin at church during worship, it was more prevalent than I had seen in awhile.

Question to parents, educators or anyone with experience with AS or ASD kiddos:  We often notice Justin stims more when he has had a lot of carbs, pasta or crackers.  (This of course is his main staple.)  It also seems to be more prevalent after time spent playing a video game with noise so we try to limit this to a degree but as Justin loves computer programming and video game designing, we don't want to keep him from his special interest.  Have you noticed where certain kinds of foods have a significant impact on reducing or increasing stimming?

Humming, Beeping or Making Vocal Sounds - Beep. Boop. Whoosh. EEEEEP! Computer error noises. Kerplunk.  Crash!  Duh-da-duh-da-duh-DA.  Video game theme music. Sirens.  Repeating the same tune or noise over and over.  Justin has been doing this for a few years now and although we kindly give him redirect reminders while we're trying to work, are on the phone or if it gets really loud or particularly lengthy, we realize this helps regulate him, so on the advice of one of his initial doctors, we let him do his thing and try to give him other less distracting options he can do while in school.  We don't want him to feel ashamed or embarrassed and although we love him unconditionally and accept him for who he is, we are continually strategizing to figure out ways that he can regulate himself in public in a less noisy way.  This is where I worry about bullying happening.  It hasn't happened much yet other than a couple snide remarks but Justin is at an age where he doesn't want to draw negative attention to himself and so it makes for a continual challenge.  Much of the time, we think Justin may be oblivious to his surrounding environment while he tries to self-regulate.

Before Justin was diagnosed with Aspergers, I remember a time in 1st grade when he used to sing the same songs over and over.  I specifically remember "She'll be coming around the mountain, when she comes" and feeling real anger and hostility toward whomever SHE was.  Now realize, Aspierations friends, I am a very patient person.  John, my husband... well, he's working on it and to his credit, he's come a very long way.  Anyway, I digress.

Did you notice anything unusual or familiar in the self-stimulating behaviors above?

One thing you probably did notice was that although both our boys are somewhere on the autism spectrum, neither of them have the same stims.  Justin was not a spinner.  He was not one to line his cars up.  He rarely put anything in his mouth and so when Ryan came around and was regularly mouthing anything and everything, it was quite a wake up call for us!  

Ryan on the other hand does not flap his fingers or arms, doesn't blink a lot when self-regulating and doesn't usually make noises out of the ordinary unless he choose to mimic something he finds particularly hilarious.  Unfortunately for us, this tends to be words like "fart", "pee pee" and "boobies" but I won't go there this blog.  If you need a really good laugh, check out my August 28th blog where Ryan joined us for Justin's Middle School orientation and provided quality entertainment for all those around.


I suppose I would be remiss if I didn't mention the fact that I've noticed some personal stimming behaviors myself. There is one that I do that John and I noticed around the same time.  This was about a couple months after I realized I had grown up with undiagnosed Aspergers.  

We've both noticed that I have a VERY hard time standing still without shifting my weight back and forth from one foot to the other.  I'm pretty sure it is very subtle because no-one in my life had ever mentioned it to me before.  I do truly wonder how long I've been doing this.  The best visual I can think of to describe it is to ask you to pretend you're listening to some music and while you do so, you sway a little back and forth in a rhythmic beat.

Now that I've noticed I do this, I am keenly aware of it and sometimes that awareness drives me bonkers. I initially thought that tons of people must do this naturally.  But in watching people standing in line at check-out counters and in many situations where people have to wait, I was so shocked to find that most people DO NOT!  The best place for me to notice a group of people at one time is when standing up in the balcony at church.  Of course when singing, I've got a natural excuse to move to the groove.  I have to admit, when I try to stand completely still and not move, it's very difficult.  I can of course do it but I prefer not to.

The other habit that I do that I find self-regulates me and I'm not sure if this would technically classify as a stim but I'll throw it out there anyway is to chew gum.  Specifically chewing peppermint gum.  In fact, I think I should buy stock in Wrigley because their peppermint Orbit gum not only gives me a "good clean feeling" and of course, sexy minty breath (BONUS!) but it helps me concentrate, it helps calm me and as I sit here on the computer typing this blog, I currently am chewing, blowing bubbles and occasionally popping my gum when no-one is around to be annoyed. (The popping of the gum is a bad habit, I know.  But if no-one else is around, I won't tell if you won't!)



Hey Wrigley, if you're out there and ever need a friendly spokesperson or a blogging plug for your products, just drop me a line!  When I was a kid I used to love Big Red gum but now it's Orbit all the way!!!  Of course if you have any extra cases of peppermint gum laying around, I'd hate for them to go to waste!  (End of shameless plug trying to get free gum!  Sorry folks!  We're back to our scheduled programming!)

I posed a question earlier.  Is it possible that what some see as a stigma or odd behavior can actually be therapeutic?

What are the plusses and minuses of stimming?  How long does it last?  Should one focus on redirecting a stim or stopping it entirely?  Are there good stims and bad stims?

These are questions I will address in my next blog.  I will tell you in advance, I do not profess to know the answers but I will be happy to share my opinion, my experience and some of the research I've done online.  

I welcome discourse and I encourage you to come back for the follow-up!  In the meantime, if you have any questions or comments about stimming, please feel free to leave them in the comments section below.  I would especially be curious to hear what kind of stims are most common in the experience of Aspierations blog visitors. 

Thanks for stopping by!
Let Your Light Shine!
Karen