Autism Awareness...

You can't know what you know before you know it.

No one is harder on me than me.

Agonal Gasps are not regular breathing.  The victim should be treated as not-breathing.

You were turning blue. My mom said, "I think you need to get him out of that car seat!"

"I think you're right..."

But you were still "breathing", kinda.  I got you out of the car seat and held you more upright.

Then your eyes rolled up in your head and you turned off.

You can't know something before you know it.

The rescue breaths did not go it.  The airway was blocked.  I used the bulb syringe to clear your throat.

The breaths went in.  Your eyes opened.  We went to the hospital.

"I just resuscitated my infant."  The nurse took you from my hands.   For 4 days we stayed.  You were on oxygen.

Agonal Gasps are not regular breathing.
...
I was tired.  I wanted to tell the nurse that I wanted to nurse you right away, but they left and took you over to a table.  Your dad had followed them.

"Put the baby to breast.  Maybe that will clear the airway."

?!  I want to nurse the baby right now anyway.

They took you to NICU.  I managed to walk myself down there.

"It's just a precaution"

You looked bigger and healthier than the other babies in there...

I could not walk back to my room.

"We will bring him to you soon.  You need to rest."

You can't know something before you know it.

I had read as many books as I could.  The hard part was getting the shoulders through the birth canal.

They call it "labor" for a reason.  The work isn't over.

13 hours of labor with the water broken, the epidural unplugged without anyone noticing, so they thought I was feeling more pain because it was intensifying - time to push.

"Torso stuck in the vaginal canal.  APGAR score low."
....
"Two incidents of oxygen deprivation so close?  Clearly, that has caused what you are seeing", says the neurologist.

"Developmental Delay"

"You want to intervene early - the brain is still elastic."

PT, OT, OCD meds?!

You can't know something before you know it.

It turned into PDD-NOS - Pervasive Developmental Delay - Not Otherwise Specified

more doctor visits, more reading...

It turned into Asperger's, with SPD and OCD, and ADHD tendecies.

They changed "The Manual" - It turned into Autism Spectrum Disorder.
...
"He is so bright!"

"He is such a good hugger!"

"He is a loving child."

"He really has a parenting problem, not a medical problem..."

You can't know something before you know it.
....
I tell you every week, sometimes everyday, "What conquers fear? KNOWLEDGE."

I read, I follow blogs, I join groups, I talk to doctors and therapists and other parents...
....
No one is harder on me than me.  What could I have done differently?

Could I have labored harder?

Should I have known they were agonal gasps?

I watch very carefully.  I keep trying to measure in what capacity I can serve you better.  How do I best equip you for life?

How can I give you more?
....
My God, what did I take from you!?

I tell doctors and other parents all the time that you have always been... you - that we have always seen all these behaviors.  That you do what other members of your family have done before you...

Fear I can face with Courage, how do I face Guilt?
....
What if I didn't "take something from you", but instead I "opened a door for you" - somehow gave you a "gift"?

It all went down too perfectly.  I didn't know what I didn't know.  I didn't know about labor.  I didn't know about agonal gasps.  You were in a seat where we could see you struggle.  I had reviewed infant CPR just weeks before.  We were less than 5 miles from the hospital.

We all love you so very much.  More than anything, we want you to know that you never ever need to be alone.
....
Gifted?  yeah, I know that term... I received it when I was 8.

It's a powerful thing to tell an 8 year old that you are smarter than most people... but you have to find some complement for that student who is too uncoordinated to play at recess, who is rigid and difficult to work with.

But gifts must be tempered with humility.  When you can see what others can't you have a responsibility to make things better.

"You are Gifted.  It is your job to take us all forward with you.  You are the next doctors who will find new cures.  You are the next politicians who will make and keep peace.  You are the next leaders."

"Your gifts aren't for you.  They are for Humanity."

There is a growing group of Autism Parents and Autistic Adults who believe that autistic people are the next evolution of humanity, divinely destined to help usher humanity into its next Age.
....
I do not ever want you to be saddled with "Gifted".

I do not ever want you to be saddled with "Disabled".

You are not going to ever be considered "Normal" either...
....
Every minute, every component of my life is arranged to help build your success.  I attempted to educate the schools, to help them equip themselves with the tools that would help you and them.  I used every ounce of experience and knowledge I had gained as a teacher and a parent...

I changed jobs so that you could stay home and be safe.  I worked hard to forge a community of friends and family that will bend to you without giving in to you.  I asked for help.  I begged for help.

I refuse to buy into the mentality of "lack".  I work hard to share a place with you of celebration, to presume competence.

I work to spread knowledge about how the whole world could teach and learn in better ways, more inclusive ways.  I present at conferences.  I talk to parents at the park.  I write my own blog.

I became a CPR instructor so other parents can be armed with information when nightmares come true.

I pray.

I cry.

I hope.

I tell myself that by working to make the world better for all learners I am serving your interests as well as meeting my responsibilities to Humanity.

But I don't know what I don't know.

No one is harder on me than me.

I keep trying to build knowledge.

Fear is faced with Courage.

What faces Guilt?
....
I know with out any doubt that you were sent back for a reason.  I can only pray that I am the parent you need; that I can figure out how to help you meet that reason - without passing on my own weights.

Your life needs to belong to YOU.

Letter to My Son...

Son, we've been arguing a lot lately. I know you are growing into a young man, that you are learning about how your body and mind is changing *as* you change. And change is hard.
I understand deeply that it is just as hard to find out who you are as it is for the world around you to let you find out who you are. There are lots of people here to help you, to show you a version of "adult", so that you can compare notes and see what fits with your personality, your skills, your being. We, the adults who love you, will ask things of you, even demand things of you, that we have learned to be Essential to Adulthood. We are doing our best to equip you with the tools to help you be who you are meant to be.
And you are not any of us, you are YOU. The only you that is just like you. You have been created singularly to do some awesome thing that God has created you to do. You probably have not done that Awesome Thing yet, even though you've done some awesome things. You will probably be in an information collecting phase for a long time yet. That may sound daunting, but know that every step, every.single.one., leads you to a skill, an experience, a person who is supposed to be part of your road, a building stone for your Awesome Thing.
I know that change is hard. Growth usually comes with struggle, even for plants and rocks. There are times when you will feel like you NEED to hold on, to keep what you had. I feel that way too - that's why I look for the little boy in the man you are becoming. But when we refuse to let go, we put up road blocks on our way to our Awesome Thing.
I want to walk your road with you as long as you'd like me to. Some parts I won't be able to go on, and some times I have to walk toward my own Awesome Thing, a road you won't be able to go on. I'll hold you hand, or I'll hear you out, or I'll give advise, or I'll out right shove you. Some roads I will block you from out of my own fears.
I know beyond doubting that God created you just the way you are for a Divine Purpose, for an Awesome Thing. I also know that God planted you conspicuously in my path, so you must need some of my wisdom.
I am asking, requesting, that you please see me as a Gift to you just as I see you as a Gift to me. I am reminding you that all the people around you are here to be your arrows, your pathway lights. And I am knowing that the Incredible You that you are will follow Your Road to your Awesome Thing. I am respecting that your life is your own, even if we have to share space and the consequences of your decisions.
There is nothing you will ever do that will make me stop loving you, even as we both struggle with change.
And that is all true whether you have autism, or not.

- inspired from a post by Diary of a Mom.

Kids with Autism ARE hard

I have read a lot in the past year or so about how autism parents should not ever complain about autistic kids because it perpetuates this social expectation that autism is a burden and that diminished self esteem that autistic adults carry.

I cal Bull$h!t.

A family is ALL the people in it, trying to live together.  It is not and CAN not be about the whole family bending to accommodate one member.  It is NOT selfish of parents to expect to have some enjoyment out of life, or to ask children to adjust to them in some ways.  The argument that only the adults have to change because they are the ones old enough to have coping skills is ludicrous.  If we are going to point out that kids are allowed to have bad days, then we have to make space for adults to have bad days too.  And truthfully, the autism contributes to those bad days - both mine and my child's.

The latest 'fight" around here is staying involved in an organization.  My son is fighting being in cub scouts, and there is a fair share of unpleasant politics amongst both the boys and the parents.  Changing will be difficult, but seems pretty necessary... so we started a conversation to facilitate that change.

Reacting with inflexible black-and-white thinking, my son starts to scream and cry that he does not like people, that I am intentionally trying to cause him upset.  I remind him that he needs to have the opportunity to practice being with people, but more importantly he needs to give himself the opportunity to have friends.

But the rigidity takes hold, and he moves to that instinctive place where he wants to hurt back - so he does.  That rigidity combined with perfectionism (all parts of the OCD nature of Autism) to drive him to find as many hurtful things as he could say about me.  Now maybe all kids get mean and hurtful (certainly we have heard that excuse for the bullying done to my son) - but the extremity and thoroughness with which he finds the meanest thing to say is Autism.  He told me that I try to upset him on purpose (no I am trying to help you grow); he told me that I am ignoring how I hurt him (as a matter of fact, 90% of my waking day everyday is invested in managing your ability to deal with change).

Maybe it was my fault for returning the argument with specifics, but I tried to demonstrate to him in concrete ways that I HAVE cared for him - specifically pulling him out of a dangerous school situation, and removing those toxic people from his life.

His response was that I have removed every person except myself.

THAT is a low blow, my son.

I was hurt, and I reacted that way.  He deserves to know that he hurts others. Am I supposed to lie and pretend that he is allowed to say whatever the hell he wants, no matter how hurtful, because he can use his autism as an excuse?  In a job setting that would get him fired.  In a public place that could get him beat up or killed.  In a legal setting it could get him slander.  There ARE very real limits on how mean you can be.

So I asked him if he wanted a new mom.  I told him that if that's really what he wants, I can make that happen.  I am not rich enough to buy him a new mom, or even a nanny, but I can report to the state that I can't help him.  he could make statements in public about how I am out to get him and the CPS would take him to live in a home.  If he needs out of this house, there are options.

I started to cry, I reminded him that it was incredibly mean, I was working hard to control my voice, but I am sure that he heard my ... vigor.

SO then he tries to correct himself, and says he wants me as his mom, but that I am just not good enough.

THAT is low, low blow.

And here we are.  I am now supposed to suddenly and instantly ignore every ounce of parenting guilt that is built into this job, that is multiplied by the judgmental dirty looks in public, by the therapists who make it clear that success is built on your follow through at home, by the school system & sitters who have told me over and over that he only behaves badly for me.

That horrible feeling in the pit of my stomach starts, the nausea and disgust.  This is the feeling I had when I was fighting for my dignity in emotional abuse from my husband.  This is the sense of worthlessness, the place that took me to the brink of suicide on more than one occasion.  I am back to trying to convince the people around me and myself that I am worthy of sharing their air.

My son carries that kind of despair too. He threatens suicide on a weekly basis at this point, every time he gets corrected, or we ask him to learn to control himself, or i remind him that he is capable and responsible for thinking of how his actions affect others.

So is the answer REALLY that since I am the adult I am supposed to just live with and accept this type of emotional abuse?  Is it really that as the mom, as the woman, I am just supposed to allow him to be as mean as he wants - because he is disabled and can't control it?  This is the same type of bull$h!t that keeps women in relationships that get them killed.  This is why so many parents are pushed to idea that death is the only viable option.

If the child truthfully has absolutely no control over how much they hurt others, then putting them into that resident situation where people who are paid minimum wage and have no emotional charge to put up with that crap are responsible for his well-being is setting him up for a lifetime of physical abuse.

Somehow, we have to move forward from here.  Somehow we have to reach that place where he knows his needs, understands how to meet them, and takes responsibility for how he touches the lives of others.

If he can't take that responsibility, then he really can't ever live as an adult.

And if he is never an adult, at what point am I "allowed" to emotionally protect myself from that kind of abuse?

flailing around...

lots of hints from the universe that it is time for me to change directions.
really this is for me, not for you, but maybe you can help...
trying to come up with that inventory list of "things I am good at", but...
I have realized I allowed myself to be taken advantage of for too long, hoping that the evidence of my emotional commitment would translate into long-term pay off...
it's like being in an ugly relationship.
I gave lots of time.
without reimbursement.
was told to finally just write it off and stop working.
they invested in my training, let me learn more and move in new directions.
they were happy with the evidence of what I had accomplished.
I held out, expecting my loyalty to be rewarded.
but I guess people don't do that kind of thing anymore - i am feeling very betrayed.
When I asked to be compensated for what I actually had given, I was told to ask no further and give less.
and when the time came to continue investing in my training, they decided "it would be one more thing on my plate" - I can't hack it.
I said, "a vote of no confidence"?
"oh no!" - they were just being "real".
"Aren't you glad you don't have to handle that problem?"
the last time someone said that to me, they were systematically denying my child the services he had a prescription for, dooming him to a life of physical and emotional recovery by their inaction.
I know what i know.
i know how to teach.
i feel when kids learn.
i know the future of education is NOT in classrooms.
several different job openings have come up in the past week alone.
you have to jump through every open window to see what doors open to you.
they all feel wrong.
i am not living my passion.
i researched.
i attended professional conferences.
I am nearly 1/2 way through my life and I am only now starting to touch on a career, a job, that will make the world a better place...
I understand why moms feel that their investment in the world is their own child - because it is all you have time for.
it is SO UNFAIR that my child has to carry the weight of my success - or lack thereof.
I REFUSE to pass on my dreams of success to my children!  they deserve their OWN dreams, their OWN purposes.
AM I larger than just 2 kids?
there are so many other people already doing what I am just starting...
tons of people offer training and info on sensory practices and autism.
tons of people teach outside the classroom.
tons of people teach swimming.
tons of people raise autistic kids, and homeschool, and get by on not enough money.
every time I do my classes, people leave awe-struck.  they are absolutely in a place where they are seeing things in a new light.
every time.
what is the next step?
again, i am at a place where i need to envision a better future, one in which i can make the world a better place and meet my responsibilities to my family...
i don't even know where to begin.
how can people see me as an effective parent but an ineffective worker?
how can every thing that is my strength be my weakness  too?
creativity, passion, flexibility...
yet people see someone who can't hack it.
i can't blame the kids... i floundered around for years before they were born.  I fought being a teacher for a long time...
i have worked in just about every educational environment imaginable below college.
so where is my list of skills?
i teach.
that's it.
one.
is teaching in and of itself unrespectable?  is that why I feel like I have no skills?
or is it me undeserving of respect?
or am i just not giving it to myself?
i clearly have not been.
i do not want to step into overconfidence.
life kicks me in the a$$ every single time I start to get confident.
am I not religious enough?
not spiritual enough?
not crediting God instead of what He made me to be?
I feel like I am trying to remake me again, to redefine...
but it only works if I am my True Self,
if the puzzle piece stops changing shape to try to fit in the hole.

where do i look to find my True Self?
How do i define that which is unseen?
when do I get to stop second guessing?
why is this so hard?
why is it so much easier to see the strengths in others than it is in yourself?

I am going to collapse on myself, retire into a state of writhing unrest, look too hard for what is too obvious to others.
i will have to be very very careful that I do not hurt anyone else in the process.
I have been on this road before & i do NOT want to go down it again.

how do i avoid that?

i can teach everyone but me, i guess.

so, what is the inventory of strengths?

AEE conference- Professional Development

About a month ago I ran across a reference to the Association for Experiential Education.  I had heard of it before, but this time was "closer to home".  The international conference was to be held near my parents' home, on a weekend that I was already free from parenting responsibilities.  It just felt like an opportunity that could not be missed.  

So, I didn't miss it.  I was able to go for only one day, not the whole conference, but that's still something.  So, I had new business cards made, cleared the calendar days, changed the oil in my car, and drove down.

Funny thing about professional development - it's more than just professional.  Maybe it has to do with my own sense of connectedness and synchronicity, or maybe it has to do with this "experiential education" industry, or maybe it's that your "professional" self is just an expression of your divinely designated responsibilities to humanity... but I certainly had personal development as well as learning a whole lot about this profession.

So I am going recall, to reflect, to try to process...

The closing event was an award to the "facilitator of the year" - who (naturally) turned out to be an interesting character.  What struck me is how he described that he "trusted the process" of experience, of letting time and experience work together to teach, to let the learning happen.  He told some stories to sum up his experience, and said that while he hadn't figured out why these stories were important yet, he knew that time would show him why...

I trust...

Experience IS the best teacher...

The night before the event, I had an odd dream, about changing jobs, about working in a prison undercover (I had watched Magnum P.I.), and just before I woke, as my body struggled to pull my mind out of that reality into the stretching and bodily awareness of my bed, I literally ran back into the "room" I had been in and yelled, "I have an idea!  We need to establish a Family Adventure Therapy Program!"  My head visualized it as some Big Key, Primary Component.  I woke incredulous.  I am not a therapist.  I am a teacher.  I have no experience, background, or reference for that idea.

I had scoured the website, seeking this details that would allow me to negotiate the space of the event successfully - maps of classroom/ meeting rooms, mention of registration hours, where to park... didn't find it.  So I went over an hour early.  Turns out it was a straight shot, easy to find, clearly marked, and Starbucks was open.

I perused the workshop listings.  I had made the final emotional commitment to coming because one workshop was specifically about working with Autism.  There were 2 other time slots to fill.  I found one about assessment.  I feel like assessment is the key "sticking point" that makes schooling ineffective.  I also feel like we need better vocabulary to describe what we see when we assess.  At the very end of the listing a workshop was listed: "Family Enrichment Adventure Therapy: FEAT".  Was that really relevant to me?

Assessment workshop: VERY useful, very insightful.  Made an immediate link with Sensory Processing language, found a new resource.  Also gained insight into how those decisions to "read" a group and choose a good catalyst for change (the next challenge activity) were made.  The assessment had to do with the facilitator goals (the end objective), but it also was about what classroom teachers call "ongoing assessment" - figuring out where a student is "at".  It also was clear that the language they used to assess is similar to what I do with sensory awareness with swim students.  I speak to my observation/ feeling, suggesting a vocabulary for the learner, and then invite them to share their differences in perception (allow myself to be wrong)... letting the learner own their learned experience. The instructor was specific about not using the word "why", but instead "how would you describe" or "what do you think happened".  He felt "why" was too big, too open-ended... I have always felt like "why" is the elephant in the room - the one thing people won't ask.  I also learned 2 new activities.  I also was called out on being an "autism mom" and trying to facilitate surprise and re-label risk.

ActivatEE session: it was unclear what that would be, but everyone was invited.  It turned out to be EPIC.  5 general members were invited to have their 5 minutes of platform, their 5 minutes to inspire, their 5 minutes to be heard.  It was moving.  Gender equality, authenticity to self, authentic assessment, finding motivation in disaster, inspired insightfulness...  great storytelling, great stories.  It makes me want to be heard too!  I know what I have to say is important, even if I am not sure what needs to be said yet.  I even ran into (by chance?) the organization's CEO while getting directions to lunch, who agreed that my passion for learning outside the classroom would be well met in the ActivatEE format.

Lunch: found a pub in town, got to see a community taking care of itself - playing old country music for a regular customer, watching the dynamic of people caring for people...  and good fried pickles.

Autism workshop: one of the presenters was one of the pediatricians who helped to rewrite the DSM and define what autism is.  He spoke of the spectrum, of outliers, and providing adequate supports without functionality labels.  He has been running a camp for autistic people for 10+ years, and kept his organization at a state level out of the political debates that rage in the Autism Community.  He just helps people.  The co-presenter demonstrated exactly how common challenge activities can be used to facilitate exactly skills and norms that we (neurotypical people) value in behavior (commonly called Social Skills).  I feel so strongly that I want to be a PART of THAT!! I do not understand how, but again, my passion for stopping the pounding of square pegs into round holes, for embracing the infinite diversity of humanity, for inclusion and understanding is loud enough to be recognized, visible to others.  I did feel like the conversation about sensory processing can be approached from different angles that generate more of a sense of identification, of shared experience.  I also think that we are still down-playing the actuality of the "6th sense"/ psychic intuitiveness that people with autism experience.  I can also see that I am not researching or discovering "new" ideas, but I am putting them together is new ways, seeing pictures others don't, and those insights are helpful to others.  After the session I spoke to a participant about "islands of information" and redirecting obsessive concerns to constructive ends.  I am not even sure what I told her, but it resonated with her about a challenge she was facing.

3rd workshop: I had talked myself out of going to the FEAT workshop, but in the Autism workshop I heard someone talking about how great the presenters were.  I followed my intuition.  Valuable lessons. For whatever reason, I was very insecure in this workshop.  I guess I felt very out of my element. I was called on mothering and teaching behaviors that I reverted to instinctively and unconsciously.  I felt ashamed, but grateful to be taught.  I was reminded to let other people keep their struggles. I was reminded that I can lead a horse to water, but I can't make him drink... and that a good facilitator creates thirst.  I learned some new activities with new tools, and was reminded of my own abilities and skills with ropes.  Somehow the presenter recognized that I was drawn there by intuition, and he made a point of connecting with me personally at the end of the session.  I do not know yet why this is important, but I know I was overwhelmed to the point of tears when he spoke with me. He reminded me that he is not a "therapist". There is something I still need to "find".

I am still confident that I needed to BE at that conference.  I know that I was rattled by the observations about my parenting and teaching.  I know that I was overcome with passion to make the world a better place.  I know I met people that will prove to be important connections.  I know that for me, like many there, the organization will be an emotional "home".  

I do not understand yet how.  There are more pieces that need to settle in... 

but I TRUST THIS PROCESS...

Not Speaking...

So I had a little epiphany moment today...

What if God creates non-verbal children because he is forcing us to communicate in a different fashion?

As a challenge course facilitator I do that all the time.  

A member of the group knows too much?  They have to play silently so the rest of the team has a chance to figure it out for themselves...

One voice drowns out the others?  Challenge that member to play silently so that new voices are heard...

Some groups don't find success at all until we tell them they all have to be silent - and then the arguing stops and they actually start completing the task...

I start most groups with a partnered hike in which one member is mute and the other blind, so that they are forced to think of novel ways to communicate. They are ALWAYS successful, even in navigating long stairwells...

So maybe that non-verbal child is there to help FORCE us to communicate in new, novel ways that are designed to help us figure it out for ourselves...

I also had another epiphany moment today.

I was thinking about how I look at things that happen around me, and about how I relate to them, give them significance, by finding connections to the stories of my own life.  I was thinking that while it helps me to feel things as real, it also limits me to stories about myself.  I actually was thinking how frustrating it is that I only get this one life, this one way in which to relate to things!  I was thinking that I would love to know even more by being able to see and feel from another person too...  I was both glad to have a life that relates (connects) to things, and frustrated to be limited to just this one.

just thinking...

On rebooting...

"This day I will dry my wings in the sun like the cormorant, and leave footprints in the sand like the piper, before I too dive back in to the work of living..."

- Facebook post 2/3/2012

And so I began my day.  At 7:45 am I went to the beach and watched world wake up.

I am VERY lucky.  My husband and my mother have both given me emotional permission to take 1 whole day to just be at the beach in Florida after the ACCT conference.  I love people, and I love learning, but I also need to have time to process & reflect.  Don't get me wrong.  I have checked facebook all day, even responded to some emails, spoke warmly with the hotel clerk, talked to many artisans along the pier, and had a conversation about the weather and dogs with a lady from Maryland resting on a bench.  I will never be a social recluse...

But I also just sat and watched and rested.  I saw the cormorants posed along the tops of poles and rocks, drying their wings in the rising sun.  I watched the gulls frantically gather when they thought someone had a tasty morsel, and then nap on one leg until beach goers unconsciously walked over them to set up chairs.  I watched pelicans use their size to bully gulls off the poles, and then sweep their great wings open as they dropped off the pole to the water in search of breakfast.  I watched the sandpipers scurry and search through the crashing surf for tasty yummies, fabulously intent, yet multi-tasking;  it was as if I could here their minds running at ADHD speeds as they tried to be negotiate the delicate task of finding the critters rolled up by the tide but not let the water catch them.  I watched the locals, mostly elderly, take their morning constitutional, occasionally passed by joggers, along the water's edge where the sand is firmer.  I watched several older gentlemen deeply involved in treasure hunting with their metal detectors and sand-sifting baskets.   I watched as all those people along the beach stopped and directed their attention to the water, and followed their gaze to the pod of dolphins galavanting in the surf between the beach and the poles.  I watched the lifeguard come on duty, and set up all his equipment and tidy up the stand area.  I watched a large fish (maybe 6-7 inches) with big sweeping wings come very close to my feet, and then realized he was stalking a much smaller fish who was hiding in my shadow.  I have never in my whole life seen live fish within arms distance in the water of a beach.  I relished the heat of the sun on my skin, the cold the water in my legs, the grit and cool heaviness of the sand on my feet.

And I collected shells.  I did so because as I watched all these people on the beach, they were all collecting shells.  Even those who were clearly locals or were intent on exercising would stop occasionally and collect shells.  The only people I did not see pick up shells were the lifeguard and the metal detector guys.  It occurred to me that it might be a good way for me to find something to take home to my children.  The thought of my children, of course, made me think about what I could teach from a shell collection, so I wandered around for a while trying to find shells that inspired a teachable moment.

I found many with different vibrant colors and shapes (diversity), and others beached white (solar power discussion).   I found some with a pearly sheen and others more like procelian (chemical composition).  I found a chunk with barnacles on it, and one large one that had circles where the barnacles used to be (ecosystems & erosion).  I found some that had holes or grooves where rolling through the surf had started turning them into sand, and others broken into pieces (erosion).

And then I reached a point where I realized that every single shell had a teachable moment in it.  Each one of those shells and shell fragments housed an animal, told the story of a life.

And there were SO MANY of them! So many that even though every body was taking them, the beach was not diminished...

I had a little epiphany... As I looked and looked, and was overwhelmed with the breadth of options that laid on the ground before me, I suddenly realized I couldn't see it anymore.  I realized I could not complete my task (finding shells), because I did not know what to look for.

You have to know what you are looking for in order to find it.  Without knowing what you are looking for, you will not find it, even if it is in your hands, because you will not have a name for it.

In teaching we call this "setting the objective".  That is why the classroom teacher is required to write the objectives on the board each day, and that is why you can't write the lesson until you know what outcome you expect, and that is why you can only assess after you've determined what you have taught.  It is about INTENTION - doing things purposefully.  That is not just "on purpose" but also "with purpose".  It is the difference between wandering and traveling, between industry and productivity...  

This resonates with me because challenge course work has such an emphasis on student driven outcomes, or letting the participant define what a "successful" experience is, because very often the outcome of these intense learning experiences is not what we originally intended.  Very often there is a process of discovery involved, not just of the challenge and the environment, but of the self.  I cannot help facilitate communication skills if the participant does not know that they are communicating, or what they are communicating.  It is one thing to describe for them that the challenge activity involves lifting others and moving them safely, it is another to enable them with the tools to ask one another for help, or provide help that is not judgmental.  They may feel they are asking clearly, but for another that clarity can come across as "not nicely"... I then need to change the focus of our "outcome" to diversity, before I reach a place where we are communicating and can be physically safe.  The power of this work is that the participant has an emotional and galvanizing experience, but we cannot neccesarily predict which aspect of the experience will be pivotal for each particular participant.  There are certainly "rules" and theories of group dynamics that shape how we do what we do, creating shared experiences (forming, storming) before establishing rules (norming), and only then testing their mettle (performing).  But these play out in very different ways, because we are dealing with humans, and people are diverse.

There is a basic conflict between the way I currently teach and "traditional" classroom teaching (the way I used to teach), specifically in this idea of intent/ purpose.  Because of this need to "know what you are looking for", all teaching is considered "outcome specific".  The educational profession spends LOTS of time talking about "measurable and observable" outcomes - meaning that what ever I am "grading" has to be something I can actually observe and that I have some way of telling "how much" of it I have.  This is where the IEP langauge comes from about "Bob will raise his hand to be called upon instead of blurting out 5 out of 7 times".  The idea here is that I can't "give a test" on it if I didn't teach it in the first place, or give a grade based upon some criteria the student knew nothing about.  Of course, that sounds incredibly reasonable, but the application leaves a sense of falseness and artificiality.  Can't a child demonstrate understanding of math by running a register rather than completing a worksheet?  Can't a child demonstrate understanding of language by making a film with dialogue instead of writing an essay?  Can't a child demonstrate an understanding of history by reenacting instead of answering 90% of a multiple choice test "correctly"?  Doesn't the child demonstrate an understand of the process of life science by taking appropriate care of the guinea pig?  How do we find that place where we can let kids learn how their brains work and then demonstrate that understanding (growth) in such a way that we (the adults around them) agree that we "saw" it?

This gap between "measurable outcomes" and meeting neural diversity is at the heart of the experiential education philosophy.  In the Autism community, Neurodiversity and Nuerotypical are charged words, indicating those people that are not diagnosed as being on the Autism Spectrum - with the connotation being that NT people are in some fashion closer to the mathematical center in a statistical analysis of the function of human brains.  I do, in some ways, mean this definition, but broader.  In my experience, we are each and every one diverse - not only within our selves (our experiences over time and in particular situations), but also from one to another (we each "handle" stresses differently and show evidence that we experience the world in a distinctive manner).  Really, I mean "nuerodiversity" without the use of a mathematical analysis, only with the recognition that the body of data points is VAST, with little to no overlap.  We are each and every one a separate and unique entity, with some variation of the possible outcomes to be had when nurture is combined with nature.  How do we respect that we all have to know what the people around us are talking about (or communicating about) while respecting that each of us is biologically (and, I would argue, divinely) designed to be a singular manifestation of energy?  How do we all "get on the same page" when we are in different books?  In experiential education, our answer is that the learner (participant) gets to decide what they got out of it.  The participant decides that the outcome is in some way measurable to them selves.  "Grade" themselves?  That is pretty blasphemous in a traditional educational setting.  Of course every kid will give themselves an A!  The grades would be meaningless if they were given by the student, right?

Many of the workshops I took this week looked at how to cross these differences.  3 of them were specifically titled with verbiage about getting schools and camps to work together, but a large part of the industry is about how to teach more effectively, and how to help academics see us as teaching more effectively.  Somehow we must breach this chasm between self-assessment and "objective" assessment, between internal motivation and external motivation, between student driven learning and objective based learning, between "I know I got better" and "you can see that I got better".  Many critics of education (myself included) like to point out how articificial the school environment is - that students will not be working with same-aged peers in the workplace, that they will be assessed by performance not written tests.  But ultimately, adults in the workplace still need to achieve tasks (outside assessment) while growing their skills (self assessment).  We, as a society, and educators, as a profession, need to be opening dialogue on these ideas.  I think the simple answer may be "respect diversity - live an let live".  The answer maybe that we need all of us, in all our great variability, to make the world as a whole "work".

The second lesson I took from shell collecting today was about history.  I returned to the beach in the afternoon (I was trying to be smart and avoid a sunburn, for once).  My afternoon excursion was shaped by the fact that a dense fog rolled over the island, obscuring the beach almost completely.  The lifeguard tower was invisible from the pier.  While I was disappointed by the sun's "disappearance", the limited visibility forced me to look at what was right in front of me.  I got to watch a sandpiper almost run into me, and a gull pull a tasty nugget from the surf (I got to see the shell it was in).  And I looked again at the shells rolling in the surf.  I thought again about the great many little lives that are cummulated in that pile of sand - and then scale overtook me again (funny how that happens at the beach).  As I took photos of the shells, I was struck with what you see when you get close versus when you step back.  The grains of sand on the beach are not little pieces of rock, they are little pieces of shells.  As you look at the sand you see shells in various states of decay.  Each life is lived and ended on the bones of its ancestors...  History is written in each grain, and the present is too.  The sand is shaped by the footprints of the birds, the sandcastles of the children, the depth of the waves.  It is as if the past and present are in the same place at the same time...

If past & present can be simultaneous, can the future be too?

My articulation is exhausted for this night.  Revelation and insight chase each other around my thoughts.  I think I'll solve this one another day...  

Hopefully I will reboot again.  I called this post "rebooting" because none of these ideas are novel to me, they have crossed my mind before, but sometimes you need to turn the computer off to get all the systems to reengage again.  Sometimes you just have to rest and reboot.

the Bigger Autism Picture

I'm gonna cover a LOT of ground here, so stick with me people...

Autism Speaks has lost its credibility with the Autistic Community.  Those adults on the Spectrum who have found their voices are adamant that Autism Speaks does NOT speak for them.  The heart of the argument is around a single ad - a message from the director of Autism Speaks that focuses on how bad it is to live with Autism.  

This outlook, of Autism as "bad", is the core of the "seeking a cure" mission of Autism Speaks - a mission that all Autistic adults active in public discourse find repulsive, insulting and threatening.  (Note that this cannot inherently include those "low-functioning" adults who are not active in public discourse.)  The argument from Autistic adults is that Autism is NOT separable from their identity.

Here are my insights:

EVERYONE, on all and any sides of any discussion about Autism advocate that the MOST IMPORTANT thing an autistic person needs is EARLY INTERVENTION.

Certainly, the medical community identifies Autism as a tragic condition, and it is a fight to get a diagnosis because doctors are so loathe to weight a child with the finality and terminality it carries in the medical field.  By medical criteria, we are dealing with an incurable condition.  Historically that diagnosis has meant institutionalization because the "victim" is a total dependent.  

So once you finally get the diagnosis, there is HUGE amounts of pressure to make up for all the time you've already lost getting that diagnosis so that you can intervene as early as possible.

Now the debate becomes not IF the patient is sick, but WHICH therapies will be effective with the patient.  A long process of trial and error begins.  Everybody chimes in with their expertise.  The Neuro will advocate from their perspective, the OT will advocate from their perspective, the Speech Pathologist will advocate from their perspective, the Psychologist will advocate from their perspective, the Teachers will speak from their experience, the Old Ladies will suggest from their... accumulated wisdom.  If you are very lucky, someone will finally send you the the Developmental Pediatrician who will try to tie all of these perspectives together.  And not all these people will agree with each other.  You will receive LOTS of conflicting information.

And the parent is trapped in a vortex of insanity.

Ultimately, it is the parent who will be the trigger on all this.  All these experts will make their suggestions based on the accumulated observations of the parents.  And the effectiveness of any strategies is entirely contingent upon the parents' willingness and ability to follow thru with the act.  The effectiveness of a therapy will be determined by the parents' observations. Solicited and unsolicited advice will bombard.  Comparisons will be sought in an effort to define through the confusion.  And there will be LOTS of people who provide you all kinds of resources to help you.  The medical establishment knows it has set up this vortex of confusion, so it will tell you to find a parent group.  The educational establishment will try to make you "part of the team" in the IEP process, to greater or lesser success depending on your locality.

Everybody KNOWS you are overwhelmed, so the next thing you'll be pressured to do is "get services", apply for "the waiver".  You'll be connected to an advocate group that will "walk you through" that process.  The idea here is that your kiddo is DISabled, so they ARE entitled to what ever they need to be successful.  Everything from in home therapy, to the hardware of the therapists, to respite caregivers in your home.  Everyone will tell you, you NEED this!!  And they are here to help you get it.  

The very FIRST thing that any advocate group will tell you is to be prepared to fight.  As you start looking at others' stories, trying to come to grips with which of the various outcomes and realities might possibly apply to your situation, you will see LOTS of verbiage about warriors and difficulties and legal rights.  The first thing you find out is that you are gonna be fighting up hill "the rest of your life".  The doctors want to "fix", so you will search and search for the "fix" that works.  The teachers want to "improve", so you keep trying to meet that measurement.

And the very SECOND thing that advocate will tell you: only list the deficits.  You are trying to convince the government that your child is DISabled, UNabled.  Sure, you may have seen growth in your child in the past 3 months, but be sure you tell the social worker about how far behind your kid is on "milestones".  As fellow parents, we celebrate that your kid only ate grass 3 times this week instead of seven, or that the obsession topic is slowly broadening, but you need to make sure that the social worker knows that 95% of the words that come out of your child's mouth are lines from movies - don't mention that they were relevant to the discussion they were used in. 

And then comes the big quiet admission.  Filing for "the waiver" or "disability" really is an admission that your child needs institutionalization, and you are asking to meet that need in the home.  Some advocates will be vehement that they are NOT allowed to ask you that, but most parents will admit that they were asked exactly that, and those that said no were denied...

The other route to those services is through the educational system.  Ideally (and in some places) those 2 systems work together, with the school using the resources of social security to pay for the aides and equipment your child uses in the school and at home.  But they are NOT the same systems.  Docs who who work in the school system are no longer practicing docs, they are references for the school - they can label, but they cannot diagnose.  But the school will tell you they their experts are better - "they know children better" - because they have to be sure their expert is an expert.  

The school is required to keep you informed, to let you be "a part of the team" through the IEP process, but it is a process, by committee, and it means that your voice is inherently outnumbered by the educational experts on the committee, and decision making is slow.  So they will press you to rush to action since committees are inherently slow.  If you are incredibly lucky, your IEP team will work together well, and your wishes will match theirs, and things will be awesome - you won't need that medical stuff anyway (until they are 18 years old).  

But luck does not run high in this pursuit.  The vast majority of parents find that at some point they are bullied into signing the IEP so that the desperate teachers can do *something*, *anything* to help your child, because what is going on is unmanageable, and they can't make changes without a committee meeting.  The experts on the IEP team are threatened by each other (politics playing out in their system), so an informed parent is a threat too.  They cannot afford to lose face in front of each other by letting you "run" the meeting.  Worse you may have been so thorough in your research that you threaten their "expertise", and now they fight to retain a shred of their professionalism.  If you are REALLY unlucky, you'll be dealing with a systemic culture where this need to prove expertise underlies every meeting and the IEP players will come into the process on the defensive - and make you feel like your small limited knowledge of just one case is inconsequential.

SO you do "whatever it takes!"  - because you are the parent, the grown-up, the warrior, the protector.  Those early interventions are the BEST CHANCE you have of giving your child the slimmest possibility that they will be able to function just well enough to avoid that institutionalized "group home" in 18 - 16 years...

Under these circumstances, you can see why it is difficult to "celebrate" the successes, to see the "gifts" of Autism.  It is clear that Autism IS in fact a burden - and it gets carried around everywhere, because there are therapists, and respite caregivers, and caring teachers, and designated aides, and judging neighbors EVERYWHERE.  It is desperately obvious in your child's gait, flapping hands, vocal stimming, sensory sensitive clothes, fidget toys... this kid is ... "special".

So you buy into your own hype.  You tell the social worker the worst.  You celebrate with the therapists, but not too much or their job will be "done".  You cry when the rude people in line at the store make comments.  You research like mad, and then gird yourself for IEP meetings.  You read as many blogs as possible to try to work with the school staff more effectively.  You observe very closely, trying to figure out EXACTLY what environmental sensory experience triggered the overload.  You manage the daily environment and routine to create "functionality" for your child.  That's your JOB. 

You dwell in that place of bleak hope, and wear yourself out meeting all those expectations.

You work so VERY VERY hard to connect with your child, to come into their world, to "figure it out"...

And then you find that community of Autistic adults who are saying that all these therapies are a punishment.  You find a group of parent bloggers who are saying that Autism is a window into the future, a new humanity.  You finally look at the remnants of your couch one day and think, "REALLY?!?!?!?!?!?  THIS is the BEST it can be?!"

And then you look at your kid, pacing the floor thru the 780th consecutive daily showing of the same episode of Thomas, and you see with your heart.  You realize that you have a choice.

Either I can look at where we are and look backwards, or I can look at where we are and look forwards...

And THEN you realize that the secret is... you have to start by looking at where you are...

Once you start listening to your heart instead of your fears, you know that you CAN connect with your kid - you HAVE BEEN connecting with them.  You have had instincts driving you this whole time to do exactly what needed to be done - and you were overridden by the "experts" and your guilt.

The first time you realize that Disney movie lines out of context really DO effectively communicate what he'd like for dinner, or that the arrangement of the shoes actually looks like continents, or that she brought you her favorite security object because you were sick... THEN you start to TRUST those instincts.

And it builds over time.  You allow yourself to watch more closely, to fall into their rhythms... you start to actually meet in the middle, not just wait for your child to come on over...

Then you can actually start to understand the adult Autistics, and the blogging parents who blow sunshine up everybody's butts.  You DO have a choice about whether is a DISability or a DIFFERENTability.  You start to see how a "cure" would deprive your kid of the creativity they found in mashing up Dora with National Geographic.  You start to see the secret genius of obsession with minutia.  You start deciding that there are roses, not just thorns...

And it DOES become a larger spiritual question.  Am I going to seek the Good over the Bad?  Am I going to value the intention over the delivery?  Am I going to listen or demand? 

Will I have faith that everything happens for a reason?  Or will I accept success only on MY terms?

Once you see the awesomeness that had been hiding behind the tragedy, once you focus on the loving child inside all that struggle, change starts to happen.  Maybe your perspective changes, so you can accept different as equal.  Maybe the kid actually develops better because they know they are loved.  Probably both happen.  The sum becomes greater than the parts, and fabulousness happens...

It isn't a "miracle cure".  The world is not "suddenly changed", except that it is...  Everything is not "just put back to rights", except that it is...  The hardships continue, except that they get easier...

And now comes the part where I have to "prove" to you that my kid is autistic "enough" for my insights to be valid... where you who are walking through the depths of these Early Interventions can find that shred of similarity that lets you believe that my experience can be reflective of yours...  where those Autistic adults can measure whether or not my kid "qualifies" to be a part of their community... where I can commiserate with others who have been to the ER for poison mushrooms, or spent un-spare pennies on sensory tools, or have learned what it is to be insulted in "dinosaur"... where we can all admit how tired we are, of ALL of it...

But I am not going to, because THIS day I am making a choice. I am walking through a door.  My child's story is HIS own.  He will tell it in his best fashion.  I am his mother, his teacher, his coach, his friend... I will play my part in his story...

But I have my OWN story - the one I am living.  It includes my kids, my family, and the Work God Has Created Me For...

You will read this and know it is True for you too, or you will read this and know you are not here... and the words will find you again when you get here.

Rest assured, that Autism is a gift, a unique path, a piece of the Master Puzzle - and it WILL all fit together correctly, eventually.

...and you need to get really good at eaves dropping and observing, buddy...

home vs Home

So the distinction here is the capitalization.

From the outside is it a small distinction, but from the inside it is pretty darn huge.

It started when I was little.  My immediate family unit lived in California, quite distant from the extended family in east Tennessee.  During the school year, I lived at home, with my mom and dad and brother and dogs.  I built a life there, a school career, life-long friends, work experience, scouting experience, relationship experience.  There are LOTS of things I learned about how to live in California. When I got older and left home, it was clear that my essence is shaped by living there, by having a home there...

But during the summers, we came Home.  We spent months "back east" with the grandparents and cousins and history of it all.  It was clearly an effort by my parents to tie their present to their past, to show us where they came from, to help us build a sense of personal history.  It was all about what southern Appalachia is...

When I reached the age to leave home, I knew I needed to come Home.  I applied to all southern schools, and ended up in the Shenandoah Valley.  At 18 years old, I named it for the first time:

My older cousin & I are driving through east Tennessee from my grandmother's house to another cousin's house.  The cousin with me had just discovered us - (her story is hers) - and had been raised in New Jersey.  She asked me about who I wanted to be, what I was Iike...

I looked out the window at the passing farms & hills...

"I do not know for sure where I will go, but I know that I need to be Here.  These hills, these trees, these mountains - they call to me.  I know that my soul has always lived here..."

"That just triggered chills down my spine.  Wow.  That is True."

And it was.  It is. I conozco these mountains...

I have now been in these mountains for 20 years.  I love EVERY minute of my drive on I-81, every time I make it.  I went to camp in the North Carolina highlands.  I keep finding myself returning to the mountains for trips, exploring the nooks and crannies of the Great Smokies, Pisgah, Cherokee, the Blue Ridge.  I live now in the Blue Ridge, and we explore Skyline Drive every chance we get - have done so for nearly 10 years.  Even when newly married, living in the city, the mountains called to us - we "went for a drive" every other weekend.

When I was maybe 14, in that time when you are trying to define yourself, my friend asked me: if you were a geographical feature, a type of terrain, what would you be?

"Water!" I blurted out, but what my mind saw was bigger:
A lake or river, wide enough to reflect the sky, deep enough to harbor ecosystems, caressing the mountains, carrying little bits of places it passes to share and deposit in future travels.  Babbling, giggling over and around rocks holding ancient information, while trees watch patiently, and life scurries over, around, and in me.  I saw mountains towering over the waterline, the birds who swim at the surface, and my mind sank into the murky depths, with hidden crevices of lurking fish and turtles.  I saw in my mind every stream we had crossed hiking the Smokies, the TVA lake that my grandparents lived on, what I later encountered canoeing the Shenandoah and Potomac...

I wrote about that Old Mountain Magic a few years ago, when the spring hills conjured voices for me.  

On Thanksgiving day this year, I drove that all day drive down I-81 to I-40.  I watched the sun rise on one slope, and the sun set on another.  I rode ridge after ridge, up and down... In these winter months, you can see the mountains themselves, the stone jutting through the tangle of dormant plants, the pastures that have been carved from the hills have that monotone hue that lets you see the texture of the place.  The stone waits, patiently catching and absorbing every snowflake, storing their glory for a time to come.  Every time I looked out my windows at those undulating heights, my hands felt like they were running through velvet folds, my lips across satin sleeves.  These mountains trigger my most heart felt sensations (my fabric habit)...  My body ached with the need to just be in these mountains, the pleasure of remembering and imagining time watching them...

I love fall too, when the wisdom of the trees turns to sleep, and their colors make the mountains look like piles of MnMs.  When each and every leaf becomes a single note in the epic opus of the change of seasons!  Each is masterful, a miraculous statement of glorious color and shape, worthy of collection and display, begging to be honored.  The season goes through movements like an orchestral masterpiece, with colors shifting from tip to trunk, until the music ends as a sleepy blanket, covering the earth, promising to nourish the the coming awakening...

When spring comes, my heart SINGS!!!! It is as if I can hear the buds pushing their way out into sun - like when a baby drags itself across the floor, or children get restless 5 minutes before recess.  I am sure that I can hear the tinkling of fairies and see the ghosts of gnomes being nursemaids to the awakening.  As the season passes, trees pass through their teen years again, showing off, dancing!  I tend to get stressed, too fenzied, but also sense the promise that fabulousness is right around the corner..

Cuz summer, baby!  THAT is the BOMB!  Goodness, I am filled with so much zest and furve!  Every day is a celebration!  Love lives in every vision, every exchange!  Every look, every smell, every rounded stone and bristly branch, every bustling animal and every riotous plant brings tears to my eyes! THE GLORY!!! The intensity fills me so deeply.  My soul knows that it has lived here forever - when the mountains were young and as they've smoothed with time...

I have lived and loved here.
I have loved and lost here.
I am here now.
I will be here again.

Like my Twin Flame, this Place is eternal for me.  Here is my beloved friend, the lover that touched my soul, my comforting embrace, the teacher that pushes me beyond my self-set limits, the dog that walks beside me through hell, the rock that protects me from dangerous elements.  I know that Here I have gone too far, and not gone far enough.  Here is where passion, life lived fully, overtakes me...

I have been thrown for a couple loops this week.  My time is needed by others.  I truly do not know when I will go home again - ailing family needs me...

But I know, that I am Home.  What ever challenges this life brings, I will transcend them.  We each get to choose which moments will haunt us eternally - and I choose to be haunted by LOVE!  

There has been, or will be another time when I was, or will be complete with you... here. 

This is Autism...

As every member of our community says, "If you've met ONE person with Autism, you've met ONE person with Autism."  Autism is a SPECTRUM "disorder" because it is effects every person so very differently. I tend to think is Autism (and life) as a pointillism painting, or like Connectiles (made by Project Adventure or Wilderdom Store)... each point is complete, whole in and of itself, but becomes glorified and meaningful when it is placed within context.  I can inherently ONLY speak to how Autism lives with us, in our family...

The story of how we got a diagnosis convoluted and painful, like MANY families.  If you're interested in all the gory details check out our Facebook Page JT's Journey and read the Notes.  Someday I am sure I'll compile them onto a book - but this is not that day.  To summarize:  We bought into the fear and doom.  We were afraid we would scar him for life with a <<LABEL>> (hear that in an echo-y voice from a horror movie), and we were afraid that he'd be a victim of society if we didn't (no supports at school, no supports when he turned 18, him stuck a dependent his whole life).  We sought a medical diagnosis, feeling that it was more "legitimate" that an educational one (which we found to be True), and found it useless in the educational system.  We found a convoluted and antagonistic relationship between the medical establishment and the educational establishment, and felt shafted.  We tried to be cooperative, informed, and involved.  We were warriors and beseechers, to no avail. We rushed into intervention preschool, and stayed in school to start 1st grade, but it was not a situation that was healthy or sustainable for us. A part of that is our Autism, but a part of that is just our general community.  (As time passes we meet more and more members of our community who find the schools unable to create an environment where their "normal" kids thrive either.  We eventually opted to homeschool.)

The medical tale is a reflection of our stress with the educational one.  Our original diagnosis was "Asperger's" or "High-functioning", but it was also called "Severe Asperger's" by more than one therapist we saw.  Our Autism includes language, so we are considered "lucky", and most adults find my kid to be pretty entertaining.  He uses LOTS of language, with advanced vocabulary and creative character developments.  There's not too much plot action, but man can he regale you with detail!  We noticed from an early age that understanding all that language took a LOT of detective work from us.  Much of it was recited (echolalia is the clinical term) from TV, or radio, or books, or conversations.  We needed knowledge of the original context in which he heard it to try to divine meaning.  Over time it became "scripting", and that evolved into more sustained/ original conversations.  But do NOT get the idea that having a conversation with this child is "normal".  Much of his info is still recited from National Geographic - more of a dissertation in nature, not a give and take conversation.  As he has grew into playing with his sibling, he often told her exactly what she was supposed to respond.  He often becomes overwhelmed with distress about a particular idea and it still takes lots of detective work to find the association that is causing him the distress.  Over time the pediatrician has changed the label from scripting to stuttering.  He starts sentences over all the time.  He talks to him self almost incessantly, a running narration of his actions and mind wanderings (very useful when he was younger - he would inadvertently announce every time he was about to open something he wasn't supposed to.  As he's aged the leaps are harder to follow.)  And he LOVES accents - has gone through periods where he spoke with an Aussie accent (Thanks to Ice Age Dawn of the Dinosaurs), a Scottish accent (Thanks to Open Season), and kind of Transylvanian accent (Thanks to Phineas & Ferb).  He tries on LOTS of different pronunciations...  It has been particularly useful in helping him cope with his sister's Auditory Processing issues and slight language "delay" (she was missing some letters for a while).

We have had 4+ years of occupational therapy (OT).  He kinda learned to bounce & catch a ball.  He sorta learned to skip.  He eventually learned to tie shoes.  He still has not conquered riding a bike or unbuttoning his pants.  We have finally decided to take a long break from therapy so that he stops internalizing that he is "broken".  My boy is charming, but definitely awkward.  Dyspraxia is the clinical name.  He has a "motor-skill delay" - he just looks like a puppy all the time - like he's got too many legs, or like he is trying to operate his body from a remote location.  Sensory Processing Disorder is another "problem" OT was trying to "fix".  Hand dryers in public bathrooms were an object of abject fear for us for a loooooong time.  Eating is STILL a Contact Sport for us on many days.  We see LOTS of flapping and pacing, and LOADS of full contact cuddling.  One therapist called him a "melter"... just pushing against something or someone ALL the time to try to find his body in space. If my kid were a Labrador or a Rottie we would call him a "lover".  The Sensory Integration therapy (OT) has provided us a language and strategies to help him meet his sensory needs.  Our goal from the outset was to provide him with "socially acceptable" (or more socially acceptable) ways to meet these innate needs.  The truth is that about every 6 to 8 weeks we see some new behavior manifest. Now we can see the patterns of how they relate to the seasons and growth spurts.  When he was little those behaviors were sometimes frightening because we didn't know how to help.  But our anxiety only added to his.  A rash would become weeping lesions.  Restarting sentences led to head banging.  Pacing led to slamming into walls.  And being a victim of bullying led to verbal aggression.  He developed a rare untreatable autoimmune disorder. Eventually, threats of suicide from a 6 year old showed that we were NOT supporting him in the ways he needed! 

We learned to opt out of the emergency mentality.  We took time to just slow down, really OBSERVE him.  We started back where we were when he was an infant - a really cool kid who did really cool stuff.  He surprised us.  He laughed, he played, and he was trying SO HARD to connect with us!!  When we came back to a place where he was just... himself... everything got OK.  In fact, it got awesome!  It was clear that he was working hard to meet our expectations of him as best he could.  It was clear that we could develop our own vocabulary for what he experienced, and it was clear that we needed to focus on strengths, not deficits.  Look, I am not perfect person either.  I have my own meltdowns and sensory overloads.  There are days and times I just don't cope (deflect to an obsession topic - like knitting). 

My Autistic son is HUMAN... JUST LIKE ME.  His experience is distinctly his own, but it is not broken or cursed!  There are no pieces missing... just ones he sees that we don't... yet.  Thank GOD he is not perfect, because then he'd be an angel and God would have to take him back!  I want to learn with and from the gift of this child's life.  It does not matter what label you, or the school system, or Autism Speaks puts on his differences;  he would have them anyway, and they would be exactly what he needs to learn in life.  HE IS A FULL HUMAN, living, everyday, the full spectrum of the human experience - he is learning to be the best him he can possibly be!  THAT is what Autism is...

My place in time...

This is for me, about the things I know, but it is also for my friends...

I have reached the conclusion that time is a human construct, not a divine construct.  For God, for infinite Divine Power, time is fluid.  I think it is our ability to hold on to time that makes us "God-like", "in His image"... we can conjure up memories and get lost in them with just the strength of our will.  We can choose to live in the past or the future, not just the present... we are able to be fluid through time.

So much of my study/ personal growth lately has focused on living "in the moment", in the "right now!"... finding ways to connect to what exists before me, with me, in me.  And I am getting better at it.  I am really able to acknowledge love and beauty in better ways than I have ever been able to in my life. I want to keep working in that direction.

At the same time, I have often felt like I can see "ribbons" of time attached to people, places and events.  It is as if there is a tapestry being woven and the threads (ribbons) weave a complex and beautiful whole that is both eternal and momentary.  There are people who I meet, know and can "see" them through time.  It is as if I have known them when they were young, in their prime, and when they are wise in experience.  There are other people who I do not "see through time" but they keep showing up "on my timeline", their ribbon, though I cannot follow it, continues to interweave with mine.  I am deeply appreciative of both, desperately curious to see how they come together, and honestly in love with all of them.

The past couple days I have been really reflective of where I specifically am in time.  I know I am approaching a transition, though I am unclear on the particulars, so I am assessing my position.  

Several of my friends also seem to be assessing.  One friend younger than I am posted a question on the importance of his college degree this week - and lots of his age peers supported his concern.  One friend younger than I had a long heartfelt conversation about personal direction and leaving home.  Many of my staff are starting or finishing college, and there is lots of tension about direction and making good decisions. There is also lots of pressure to be sure there are no "lost opportunities".  I remember that pressure.  As I looked to my experience to help inform theirs, I realized that mine was shaped with an unexpected and unusual physical disability (surgery on both knees).  The lesson was to hold on to what I needed and work through the challenges.  I could not have predicted how that played out, but I was driven to achieve the pieces I needed... the associations and events that still link to where I am today (scouts, foreign travel, my university, needle arts, family, the mountains...)

As I have looked to the friends and family I have re-encountered, I know that I could not have predicted where they are either.  In the last year, several have divorced, but i discovered others have never married (though I would have expected them to).  Girls (now women) I was in scouting with for years, who I knew in deeply emotionally intimate ways, who I grew up with, are not in places/ situations that I could have possibly predicted!  While a base essence of them is constant, still there, the specific manifestation of that is unexpected.  The deeply religious girly girl became a member of the National Guard, and is now a foster parent.  The life of the party (she led every late night sing-along) is a special education teacher with 2 beautiful children.  A boy (now man) I went to elementary school with is a well traveled missionary, who has rebuilt the organ in the Crystal Catherdral.  From my circle of "high school posse" we are all over the nation, living with parents, struggling with special needs children, finding new ways to connect with our spirituality, advocating in our communities, and just trying to get by...  Of my cousins - we are all over the country, still getting our educations, touching lives in academic and military endeavors, dealing with cancer and tragic accidents, trying to equip our kids with the best tools we can, and just trying to get by...

As I look at me, I am overwhelmed with realities that I never expected.  I grew up driving L.A. freeways, I never expected to spend my life exploring scenic by ways.  I loved camping and scouting, but overlooked its power because it was so constant in my life.  Only after the dysfunction of my body "took" those activities away from me did I understand - and I make a living doing them despite the limitations of my body.  I expected to be a mom, but never ever a teacher.  And I certainly could not have possibly imagined being an autism parent, and the amazing journey it has led me on.  I knew I would seek knowledge all my days, but never imagined that I would learn to honor experience over "book learning"/ academic rigor.  If someone had told me 20 years ago that I would be living in these blessed mountains, homeschooling, or working at a camp, I would NEVER have believed them.  I would never have believed someone if they had told me I would miss authentic Mexican food.  It would been beyond my realm of reality.  I ask you to take a good look at you, but do not believe for one second that it in any way represents all that you will be!

More importantly, I would not have believed that I could be in such a rich emotional place - that I would have a job where my co workers are my friends, that I could be so in love with my coworkers that they are my family.  I would never have believed that I could be surrounded by people who accept me, people who are not just tolerating me, but loving me, growing me... I COULD NEVER HAVE BELIEVED THAT I WOULD BE EXACTLY WHERE I NEED TO BE!  Because, "back then", I was so emotionally invested in the struggle, in the transition, that I couldn't imagine the destination.  I was too busy looking for answers that I didn't see people. 

And this is what I want to say to all my friends, to everyone who is transitioning RIGHT NOW: It's OK.  You will not be able to imagine the destination.  You will not be able to see where this is heading.  Unexpected diversions will come up, and they are not "missed opportunities"!  They are the windows and doors that will lead you to exactly where you are supposed to be, exactly where you need to be.  DO NOT BE AFRAID!  There will be angels and friends and loving people there, both along the path and at the destination.  You are right - you will be sad sometimes, and frustrated sometimes, confused many times, and doors will close.  But your confusion will pass, even if you choose to stand in front of that closed door, some one or some thing will come along and drag you through a different one (the secret is to listen to invitations so they don't have to drag you).  The essence of you, the Gift that God made you to be, the Good that you are created to do will fight its way out, some paths will become clear, patience will be rewarded... and all those other idioms of happiness really do happen!  

If you are not sure where to go next: LOVE PEOPLE, it is the most important thing you can do!  In acts of love paths become crystal clear - you will know exactly what you have to hold on to and let go of.

I will say that the confusion does not ever TOTALLY disappear.  My mother told me when I was 18 that I would never feel older than I did right then.  Her exact words were that I would gain knowledge, information, but I would never feel more prepared to make decisions than I did right then.  A good friend repeated that sentiment to me this week - saying he felt like he was still making the decisions of a 17 year old even though he was in his 20's.  I have to say, I remember feeling that way right through my 20's... but I also have to say that some things did become clear, some decisions were easy, with no clouds of doubt.  There were times I looked at a person, a place, an event and knew immediately what I needed to do.  Many of them were not even conscious decisions - I just acted... because my heart knew it needed to, my soul just led me, I just "went there".  Follow THAT.

And while I feel like (and hope) that I have gained wisdom, there are still choices that I struggle with, decisions I am afraid to make because I fear the long term ramifications, still pieces of me that I feel like I should know better.  I still get frustrated with waiting for things to play out, and doors to open, I still find regrets on how I could have touched a life better, or beat myself up for not doing a better job.  I try now to look for a lesson, not just be sad...

And as I wrote this, it became clear my soul is "going there" again.  These words are for me too - to remind me to let the destination go, because I can't see the destination anyhow.  I have been living in a fearful transition for 2 months now, but I also have some things I know I need to do, some places I know I need to go.   I have people I KNOW I LOVE, and it is time to look at what is clear instead of trying to peer through the obscure mists. 

The doors that open are the ones you are supposed to walk through.  You exist exactly where you need to, when you need to.  Love, Good, angels, surround you right now!  Go kiss 'em!  Live Love as an active verb!