Gaining Traction in Autismland

I have been feeling very stuck in Autismland.  It is a feeling that comes along every so often, like being stuck in the snow in your car.  You hit the gas, wanting to go somewhere, and the wheels start to spin and spin.  Maybe you inch forward or back, but you keep falling into the hole you are spinning, deeper and deeper into the snow.  You can't get to the bottom to get some traction, and pushing on the gas pedal is frustrating and infuriating.  At this point I usually hit the steering wheel and scream, which are almost totally useless activities.  Except they keep me from breaking something nice and fragile, like the turn signal or wiper thing-a-ma-bob.  Which is what I really feel like doing.  But before I get to that point I have a very fast and deep debate with myself.  "I'm stuck.", "No, I'm not, I'll get out of this."  Try to drive again.  "Crap, I'm stuck.", "Noooo, I refuse to be stuck, I will just gun it a bit."  Try to drive and really dig in.  "Shit, I'm stuck!"  "No, you're not.  Just do that same thing again, just a little different."  And so it goes, with the two parts arguing.  The truth seeing part and the avoidance part.  The part that is willing to seek help, and the part that would rather die first.  The difference between driving in the snow, and having a kid with autism, is that you can have this debate for a very long time with your kid.  You can spin your wheels while being deeply frustrated and wanting to scream, and at the same time delude yourself that things are moving along fine.  That is where I have been for a while.

All this does not keep me from loving my son.  And appreciating him.  And playing with him, doing homework, going out and about.  I have been doing all this and more, but at a deep level wanting to scream.  Because part of me has known we are stuck.  Spinning those developmental wheels, or at the very least, not getting the traction we could have.  Should have.  And here is the crux of Autism.  It is all about the development, or lack there of.  And development, Development, with a capitol D, is so damn hard.  Why?  For two reasons.  One, it is a moving target.  And two, typical kids do it naturally.  They proceed from one thing to another naturally, without any fallout.  As babies they go from cooing, to babbling, to using vocalizations to get their point across.  From looking at that thing they want (and everything is fascinating), to crawling over to it, to walking to it, to climbing for it.  And they are exploring all the time, first home, then the close in world, then the outer world.  They just naturally start asking questions about everything they want to know about, and they want to know about it all.  Not so with autism.  Everything is fearful, and many things appear to be painful.  The senses do not integrate well together, so most things are very confusing.  Anything new is to be immediately rejected.  Physical tasks are not a joy, they are too hard.  And that is where you start, with a child with autism.  They live in their own world, because the rest of the world sucks.

But that is also what makes children with autism such brave little beings.  Because even with all this, each of them find their loves and safe places in the real world.  And each of them can learn, really learn, everything they need to know.  My little guy also has a mild case of autism.  His wiring is off, for sure, but he has taken readily to all the interventions and assistance over the years.  When the work is right, he grabs on and goes with it.  And we have made great developmental strides.  He has now hit almost all of the milestones of childhood to his current age.  He has real friends that love him deeply in their grade school way, and he loves them back.  He is totally affectionate at home.  He loves going to school, and has marvelous teachers, helpers, and classmates.  He is learning well, is an ace speller, and can swing the monkey bars like noone else in his class.  And yet.  And yet, that feeling has been on me for weeks, if not months now.  Stuck.  Stuck in his development of his social skills, where his friends and classmates know and love him  but he cannot keep up with their increasing complexity.  Love is only enough if I am satisfied with him being the class pet.  Beloved but limited.  Good for petting and playing, but you can't have a real conversation.  And that is the crux.

Conversation.  True communication.  Where both parties show an interest in one another, and move off to build something together.  Be it a game, a shared story, or a trek through the woods.  I can give my son experiences, throw him together with other kids, make a container for safe sharing, but I cannot make him initiate.  I can demand that he respond, but I can only prompt him to initiate.  "Say hello", I whisper to him, and he will gladly and genuinely say hello.  We have been working on that one for a long time, and as a matter of fact he is quite good at greetings and will often initiate them.  But greetings are not the only forms of communication, they are the tip of the proverbial ice berg.  There are also good-byes, questions, comments, sharing of materials, sharing of ideas, requests, sharing feelings, telling stories, and play.  Play is so complex that it makes the head spin.  Yet it is also so basic.  As are all these forms of communication.  And they all take initiative.  And initiative is what kids with autism do not have, where social activities are concerned.  They can initiate for needs like food, favored solo activities, and safe adult contact, but social activities are a whole different ball game.  Social initiations, appropriate ones, are one of the core deficits of kids with autism.

And this leads me to my break through.  Autism affects every area of a little persons life, and yet it all stems from three core deficits.  I have been spinning my wheels through all these affected areas, while not having a grasp of the traction points I am trying to get through to.  Enter serendipity.  Because of Christmas break Alex has become more disregulated than normal.  Christmas makes all children go insane anyways, due to it being so fabulous, and this year Alex was in the full swing of things.  We spent lots of time out of routine, and he watched way too many movies.  For him, that means six in a week.  And he got stuck in movie land.  Stuck repeating dialog.  Toy Story dialog to be exact.  It did, and did not help, that he got lots of Toy Story characters for presents too.  There is more potential for creativity with toys, but it also seemed to drive him deeper into scenes and dialog.  Why?  Because he has an amazing memory and can repeat all three movies.  So he can skip from one scene to next, and back again, endlessly.  Endlessly amusing himself with all the words and situations, all by himself.  He would bring others in by trying to get them to repeat the parts too, or asking them questions about what came next, even though he already knew the answers.  At first this didn't bother me, because it was showing creativity, and an interest in complex social situations, but as certain themes started to repeat it all took on more of a self-stimulation feel.  And it got more and more repetitive and ingrained.  I couldn't get any traction with him, and I started to get that feeling of wanting to beat my head.  Just then, I looked up.  I looked up into my Autism Book Cupboard.  I didn't have my usual go to book, my bible of autism, because I had loaned it out.  So I looked up at the rest of them, and pulled one down that I had not looked at in years.  I read the table of contents and started to get excited.  I dove in, and it was like a miracle.  It had the answers.  All the answers.  Every question I didn't even know I had been having.   The truth finally hit me.  I'd been stuck.

I'd been stuck, and telling myself we were fine.  Spinning deeper and deeper in the snow, deluding myself that we were getting somewhere, until finally we'd spun so deep I had to look for help.  In some ways I have been stuck for a couple years.  Pleased with his progress at school and with friends, but still troubled deep down because I didn't have a focus.  I didn't have a clear picture of exactly what to do.  And all my experts were gone.  Right through Kindergarten I could rely on Tahirih at the Scottish Rite Language Clinic to be my rock.  She regularly met with both me and Alex, had been to our home and all his school settings, and we could trouble shoot anything.  But he graduated from the program last summer.  School is fantastic, but they are school based.  At home we are on our own.  I had my autism bible, but forgot to look at it.  Then I loaned it out.  I didn't know how alone I was.  We had come to a stand still on a bunch of issues at home.  Food. Dressing.  Creative play.  Getting ready for school, outings, even bedtime.  Resistance to everything was on the rise, with Alex digging his heels in and wanting to do the same things over and over.  I had stopped trying to move him forward on anything, stopped teaching, stopped trying very hard.  Spin, spin, spin.

And then came help.  In the form of a book called Pivotal Response Treatments for Autism.  It is actually the underpinnings and research studies that resulted in my bible, Overcoming Autism, and it says some very important things.  Things I had not noticed before.  "...autism itself may be a much milder disorder than previously suspected...many of the seemingly severe aspects of the disorder may be side effects resulting from abnormal development.", emphasis mine.  And further more, " Some of the core areas that, when treated, seem to produce especially large... gains are:
     Motivation to engage in social-communicative interactions
     Social initiations (initiated by the child), especially those of shared enjoyment and joint attention
     Self-regulation of behavior"

This is it.  These are the areas we need to work, and the other things will fall in line much more easily.  Ignore these three cores, and everything will be an up hill battle.  EVERYTHING.  The book goes on to address all these areas in it's next 250 pages.  I have been reading, and highlighting, dog-earing, and underlining.  I know what I am targeting, and what to work on next.  I see clearly where I have been stuck, and how to get traction in all those areas.  And in the several days since I looked up and picked out this completely ignored book I have been on fire.  I have been trying new things with Alex with great success.  I am both excited, and at peace.  I am grateful for being ready to take in the new information.  Grateful for being stuck.  And grateful I didn't actually break anything while hitting the steering wheel and screaming.  Grateful, and ready to truly drive on.

It's A Wrap

 I stole these questions off my friend Kimberly's blog.  Well, I've never actually met her in the real world, but since she is partners with a very dear friend of mine who I do know in the real world I think it all counts.  Anywho, here we go... 

2010

What did you do in 2010 that you'd never done before? Walked 60 miles in 3 days, plus 250 in training.  'Nuf said.
Did you keep your new years' resolutions, and will you make more for next year? Can't remember last years, if I find them I will add them.  Making some for next year, to include regular exercise, keeping my place clean (starting Fly Lady on 1/1/11, again), and embracing work.  I know... boring!!
Did anyone close to you die? Thank God, no.
What countries did you visit? Jamaica.  Yep, very lucky, and there was NO hard work involved.  Yes, I am likely to burn in hell.
What would you like to have in 2011 that you lacked in 2010? Fun with power tools.  Time to really build that attic bedroom.
What date from 2010 will remain etched upon your memory, and why?  Ummm, only thing I can think of is January 4.  It really sucked and I ended up in the ER.
What was your biggest achievement of the year? See Question #1. Plus raised over $3,000 for breast cancer research.
What was your biggest failure? No Christmas cards.  Earth-shattering, eh?  Oh, and terrible with Thank You cards.  That one actually is rather earth shattering :o(
Did you suffer illness or injury? Yeah, another year another injury.  January 4 touched off a month in bed with a pinched nerve in my neck.  Damn sledding.  Couldn't even read because I had to be face down. 
What was the best thing you bought?  A tie, the book Deep Economy and the book Framework. 

Whose behaviour merited celebration? My son, making tons of gains.  And all his teachers and helpers, and especially his little friends.
Whose behaviour made you appalled and depressed? Most Republicans; and lazy, shortsighted Democrats that didn't see the steamrollering coming.  Next year is gonna blow.
Where did most of your money go? Savings!!
What did you get really, really, really excited about?  Our little business maturing and taking off, with new art work to boot from a super cool artist.  Had great times with my family of origin this year too.  Super cool!
What song will always remind you of 2010? Theme music from Battlestar Galactica.  Yes, the series has been done for a few years.  Worth the wait.
What do you wish you'd done more of? Camping and blogging and boating.
Did you fall in love in 2010? My son, again.  Husband a close second.
What did you want and get?  To give back my foster dog to her original owners, and their kids.
What did you want and not get?  A new job.  But coming to terms nicely with the current one.  

So, there it is.  The recap.  Am sure I forgot tons and would write it three more different ways on three other days.  C'est la vie, 2011 is coming fast and better done than perfect.  Bon voyage!

New Blog Subject- Local Duluth

Duluth, Minnesota is a wonderful place to live.  It has so much to offer it is ridiculous.  This new blog category's aim is to feature all the amazing things about Duluth and the area that are sustaining.  Also exciting, fun,  unique and interesting.  Most things will be cheap, or free, or maybe require some elbow grease or effort.  The idea is to explore and enhance community, to let the roots grow deeper.  Especially in these times of economic drought.

The plan is to feature things like the farmers markets, local farms, the trails and parks, pet and animal goods stuff, and activities for kids.  Plus neighborhood programs, schools, and churches.  Volunteer opportunities, local businesses, and unique citizens.  Food, music, and theater will also likely creep into the mix.  It is all fair game, and hopefully lots of folks will add their two cents.

Inspiration is the key to deep living, let's dive in.

ps Changed my template and merged my blogs.  Tired of feeling bi-polar.  Time to integrate.  Still need to update my side bars, etc.  Wahoo!

The Things My Kid Says

It all goes so fast.  I was looking at a blog for my friend with a young pre-schooler and I can barely remember when Alex was that small.  It goes to reason that I will not be able to remember this current age one day soon, too.  I have plenty of pics deep in digital land, but what of the spirit of the age?  I should be writing it all down as soon as it happens, but alas my organizational skills hold me back, so will recreate what I can for Alex, at age 7.

Alex has taken to randomly hugging me, giving me a kiss, and in a whispery little boy voice say, "Mama, you are my best friend."  I'll take that.  I have also watched this lovelyness unfold with his father too.

Halloween night he was skipping and running down the road with his four year old buddy Ben (Alex was Sheriff Woody and Ben was a plush shark) and they were singing the A-B-C song, and then made up a Trick or Treating song together. 

He loves telling stories now, and will tell long ones about the Alphabet, and Word Girl, and the Energy Monster, mostly raided from his favorite learn to read web site.

This past summer we spent many long conversations on, "What would happen if we were driving down the street, and the Red light started blinking?!", and "What if it was windy and rainy, and a tornado came down on our house?!".  Mind you, these things were stated gleefully with only a bit of a worried edge.

And most recently, last night in fact, he told me he hated me.  "Mama, go away, I hate you and I don't love you any more."  I should be devastated but really, I am okay with this.  I did something to piss him off, and he gets it.  And is responding.  What I did was let him know I forgot to sign him up for the swim lessons he wanted, and now it is too late.  Oops.  I feel bad about this, and clearly he does too.  The good news is that I will make it up by taking him to open swim, which will get us in the habit.  Then I will sign up for the next round.  Being only 7 I am hoping his capacity for a grudge will only last a little while.  I want to get quickly back to being his best friend.  Gotta get it in now, before those teenage years hit.

Frickin' Oww

Ow.  OW.  OWWW!  I injured myself in a truly stupid way today, and here I sit with a bag of frozen peas on my head.  Frickin' hell.  Ow.

It all comes from dog trauma.  There is the foster dog.  There is the family dog.  And there has been the tension of when the foster dog will go away to bother our family no more.  How does she bother me?  Let me count the ways...  She barks, all the time.  She digs, like a steam shovel.  She escapes with elan.  She has attacked our neighbor dog, and knocked over our elderly neighbor in the process, after busting out our back door.   She does not listen.  She table surfs during dinner if we are not watching closely.  She does not care about the humans opinions.   She pulls like a badger when on the leash, and runs like the wind when off.  She is aggressive with 80% of female dogs we come in contact with.  We can barely take her out of the house, much less on trails, trips, and camping.  She is not the dog for us.  And, apparently she has very tasty poo.

We have known this for a long time now.  Our good dog has one flaw.  He likes to eat her poo.  This is just about the grossest thing on the planet, and we cannot wait for it to be solved by her departure.  It  cannot come soon enough.  Today we finally got a call from her owner, and it looks like she will be going home by Thanksgiving.  Hallelujah!   That was a wonderful moment.  20 minutes later Jack was in the bath because he had somehow become covered in her poo, head, back, side.  He was a gross and disgusting mess, like never before.  He must have been anticipating her departure too.  That was an infuriating moment.  A frustrating, infuriating, Now-we-have-had-ENOUGH moment.  Makes you want to scream.  I held back quite well, I thought, and barely let out a peep.  I had it all under control, until after dinner.  Our good dog needed to go out, so I had him on the leash, and then the other one was scrambling to get out the door too.  I grabbed her collar, tried to hold him back, and opened the door to reach for the lead outside for her.  In the process, pissed as all hell, I didn't see the metal door catch on the door frame. 

You never really know how fast you are moving, until you hit something.  It is harder to see things when you are pissed as all hell.  And you may never really know how much patience you have until you live with shit eating, barking, pulling, running, digging, attacking dogs.  If I am very lucky, this particular life lesson will be completed around Thanksgiving and my bruise will have faded by then.  Pass the gravy.



ps  I should also reveal that this all came about because I was trying to find another Lucky Dog.  I was trying to make something happen that had happened as a gift.  Ungrateful for what I had, I pushed too hard and came up with Sofie.  Today the saga closed and it looks like Sofie will be going to her home, and today it is two years since I put Lucky down.   I am happy, I am sad, I am ready to be grateful.      Good night.

Holy Cow - Part 2

60 miles.  What exactly does it take to walk 60 miles?  #1, training: if you want to feel good.  #2, friends: if you want to feel happy.  #3, water, Gatorade, and snacks, snacks, snacks: if you want to finish.  #4, sunscreen and a big hat: if you are pasty and paranoid like me.  And it sure helps to have a never ending cheering section, and toilets every hour.  Plus camp at the end of every day for showers, food, and lots of company.  Plus the fact that everyone was on an event high didn't hurt at all.  We were all in it together, and we tried our darnedest to make it a good time.  Follow the jump cut for photos and more....

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Day 1 started with Opening Ceremonies.  All of us (2,400) squashed into a big holding pen with a stage up front.  Before they opened the gate, however, we dropped off bags, met with friends, got coffee (at least I did), and signed the names of those we'd lost to be lifted up on a flag.  It was early, it was dark, and I was rather nervous.  I was going with veterans, and I wanted to hold up my end of the team.  We strategically made it up towards the front of the pen, so we could start walking soon after the ceremonies were over.  The ceremony was very inspiring and loud, with music, and more flags, and honored survivors.  It put us in the mood to remember everyone touched by breast cancer, and get ready to give it our all with our feet.  As we left the pen we were scanned out, so they would know where each one left and how many were really there.  And we started walking.  And walking.  And walking.  A river of pink through Minneapolis suburbs.

2,400 is a hard number to grasp.

Just think big.

 On day One we quickly made it to the Minneapolis "Lakes", and had a lovely morning of breezes and lake homes.  The going was not tough, and I quickly settled in to enjoy the walk.  I have never been much for super huge events, usually sticking to off beat individual and small group situations.  This was different, but very cool.  Our team had trained on the Lakes, so I was in familiar territory.  I still had some paranoia because Jen had been felled by dehydration on our biggest training weekend, the morning of day two after 21 miles the previous day.  I figured if it could happen to her, it could certainly happen to me.  So I drank my water, and Gatorade too.  If you have never experienced the stuff, you might not know that it makes you pee like a race horse.  I was almost always in need when the next pit stop came into view, especially with my morning coffee habit.  I had tried one big training day without it, and the resulting headache made extra bathroom time seem worth it.  

It really wasn't as bad as this looks (and a good time to stretch).

After the Lakes we made it to our first big Cheering Station.  These are set up by the event as places for your family and friends to come, to reduce too many people stalking the whole event and running over people in the process.  There had been plenty of cheering people anyways, but the station was intense.  People lined both sides of the path with cow bells, signs, clappers, clapping, and candy, candy, candy.  Some were one stop supporters, others we would see again and again.  It was great.  They were a real boost, and the sugar was nice too.  I had been advised to carry very little because the 60 mile buffet would provide, and provide it did.  We got to lunch next, and I should have saved more room.  Too bad they would not let us eat in the Sculpture Garden, but we crossed an artsy bridge and lunch was set at the very nice Loring Park.  Sue's husband Jim brought us an extra special lunch from their home just a few blocks away.  Holly and Pamela joined us and we had a real team lunch.  The innocent looking clouds cut things a bit short by unexpectedly down pouring on us, and all the event walkers got drenched.  There was just no way to keep feet dry, so it was going to be a good test of their toughness.  We got moving in the rain, after many quick thanks to Jim.  It rained all through downtown, and we were splashing through small lakes at times.  Then the clouds rolled away and it got HOT.  Into the 90's with blazing sun.  We squished our way in soggy shoes through downtown, across the U of M campus where Jen and I had been roommates, and on up the Mississippi river.  Memory lane and best forgotten stories kept us all amused, as some around us started limping.  It was a long road along the river, and seemed to all be uphill.  The Pedi-Cure van was kept busy with those needing a lift, and we started looking very forward to the finish of the day.  By the time we hit it at Macalester College in St. Paul, and were scanned once again, we were very ready for the air conditioned buses that whisked us away to camp.  I had a bad brush with pain on the bus when I tried to stretch my quads, and came up with a hamstring cramp that nearly dropped me to my knees.  I drank lots more water and went very slowly before trying that again.  That was the worst of the day, and not a single blister had visited any of our team.

Camp was a trip.  Just imagine well over 2,000 walkers and volunteers bunking for the night.  Showers were set up in the backs of semis.  The dining tent sat thousands.  The line for free massage was way too long, but at least the yoga mats were accessible.  Everyone was just giddy, except the sizable percentage still limping, but they still had many smiles.

This was only a portion of the tents.

After a long day on the road both Jen and Holly were a little goofy.  

Pamela too.

 20 miles down, 40 to go...  Nothing much to think about except, eat, drink, sleep, and smile.

Holy Cow- 60 Miles is a Long Way

One month ago I was at the start of a grand adventure.  60 miles of walking in 3 days.  60 Miles!  It was an incredible.  First off, I have to thank all the people who donated to the cause.  Breast Cancer is an awful, terrible, horrible illness, and it is on the rise.  The whole point of this walk is to save lives.  Period.  "Because everyone deserves a lifetime" is the official motto, and that is so true.  The money raised goes in two directions, breast cancer research and breast cancer awareness.  We raised a ton of cash, and that rocks.   We also raised awareness, and inspiration, which are not measurable but key to the whole deal.  Women power is an awesome thing!  Each woman participating was required to raise over $2,000, and there were well over 2,000 of us.  There were a few men walking too, and boy did they have fun.  They were celebrities.  I think the coolest thing about the whole event was the attitudes of each and every person.  Personal differences were put on hold, the every day grind was forgotten, there was no competition to look good or be the best, no judgment, we were one. And the focus was intense.  One foot in front of the other, and give everyone else all the support you can.  The positive vibe kept us walking on air.  And it was all personal determination, because there was no external pressure to finish.  There were sweep vans cruising the course constantly to help anyone out who was in trouble, and no shame in finishing early.  Because of that we all pushed harder.  Complaints were the exception, not the rule.  And the volunteers and supporters ROCKED.  There were many sad stories, of course, but it wasn't a bummer of an event.  Everyone was remembered and held up, no one was forgotten.

So, what was it like?  Well, let's start with my team.  First there was Jen.  Jen was my college roommate, in my wedding, and my son's god mother.  She lost her mom to breast cancer 15 years ago, and she has done this event every year.  60 miles, seven years in a row.  Amazingly inspiring.  Next there was Sue.  She is friends with Jen, has lost several dear ones to cancer, and is determined to walk as long as there is no true cure.  She started the year after Jen, but then did two walks in one summer a few years back so also had seven walks under her belt.  How could I not do well with such a power house team??  As for me, Jen inspired me to join the team, as well as all the women in my life who are survivors, and those I have known who didn't make it. All together, the walkers and the inspiring, we went together.  Our team also had two crew members who put in countless hours preparing and fund raising, as well as tireless event support over four days.  Pamela was a walker, then was diagnosed herself just before her wedding last year.  She is currently in treatment and I have no idea how she has so much energy.  Holly is a fantastic supporter who has crewed every year that Jen has walked.  There is also a strong support network in the Cities of friends, family, and spouses, who helped fund raise, trained with us, brought food, were drivers for the weekend, and did countless things to help make it all happen.  Thank you all!

Sue, myself, and Jen, all geared up and ready to go.

Holly and Pamela, with their Pedi-Cure Cab.  Prepared to cruise the course and picking up anyone needing a lift.

We were ready.  We had each trained over 250 miles over the summer, we had our gear dialed, we were well hydrated and supplied.  The Pedi-cure van had it's snacks, water for any riders, and the perfect attitude.   And then we started walking!