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.

Narrative Therapy, Echolalia

I found my time at the ACCT conference exciting and informative.  The classes I took affirmed for me that I am in the right industry.

At my last workshop, I ran into an idea that has me still reeling to connect all the dots.

The workshop was based in the Therapeutic Psychology of Carl Jung.  The therapeutic model of looking at the world first and foremost believes that the everything a person does happens for a reason - "Behavior IS Communication".  Jungian psychology specifically looks at ways in which we express our subconscious, like in art and dreams.  The point of the workshop for challenge course facilitators is that the very act of creating art, especially when we ask people to do it as a group, creates a conversation opener, a tangible expression of what we might have difficulty labeling with words.

Here's what I heard:

One aspect of Jungian Psychology is Narrative Therapy.  It is a practice by which a therapist may ask someone to just tell a story.  The therapist may then retell the story with some slight changes to suggest another resolution of the conflict or ask questions that help to identify an underlying theme.

Here's what my head said:

Seriously?! As if I have not been doing that every day for the past 10 years deciphering my son's constant external internal dialogue?  I can't even begin to count the hours spent trying to figure out how a specific episode of Dora or Diego recited verbatim related to whatever activity we may have been doing or a place we might have been , or something we drove by, or something he might have overheard... only to finally figure out that he was talking about food episodes because he was hungry.
[As a matter of fact, when I retold the definition/ explanation above to my husband, he actually started laughing and said, "there's a whole theory about that?"]

Then I tried to refocus on the content of the workshop.  I worked with some new friends to create a sculpture of "7th grade" out of a bag of toys.  We ended up setting up "boy" toys vs "girl" toys in our remembered gender segregation.  It got really interesting when we looked at the other group (who got to represent themselves), and I noted how the shape they created represented both a tree and a brain (key components of challenge course work).  The presenter even asked me if I was trained in psychology.  (It took a great deal of effort not to have a smarta$$ answer about how the years living with the detective work of echolalia certainly should count as "training").

I can totally understand how this tool, building "sculptures" out of an odd collection of old toys and things by an entire group, can be a great catalyst for conversation about how they perceive their dynamic.  I can understand how a facilitator doesn't need to be a psychologist to ask meaningful questions about how the group decided to use or arrange particular elements in their "diagram".

But what I left with was this reeling feeling that I had been had. I was disappointed.  I was shaken.  How many articles have I read, forwarded, shared about echolalia, about the debate of harnessing vs redirecting?  How much time and money has been poured into speech therapy to "fix" this? (By the school system, even if not by me).  Parents have been trying to assert (for at least the 10 years we've been at this) that echolalia is a legitimate form of communication, that while it requires lots of creativity and persistence, it can be effective.

And I am angry.

If this is pretty common medical knowledge (Jung studied with Freud, so these theories are not new), and rather regular therapeutic practice (not just theory), then why are parents of autistic child not armed with such knowledge actively?   Why can't the "medical model" of autism encourage us to look into, harness even, alternative forms of communication, instead of assigning us to the incurable disaster of isolation (for our loved one, for our family)?

Indeed I am so angry, that as I proof this, I am not even sure that I can coherently express myself.  

The "World" must STOP telling parents that they do not "get" their kid.  The "World" must STOP perpetuating the message that experts who do not live with a person somehow know more than the family that shares rhythms, experiences, history with that person.

It comes back to that idea that we, all of us, need to start looking at the "can do"s instead of the "can't do"s.  Let's start acknowledging that we are all inherently driven to communicate, but it takes creativity to "hear" sometimes.

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.

More on this Parenting Guilt Thing...

I know I have belabored this point...
I have over thunk it, torn it apart, put it back together, and tried to refocus around it or through it, or something..
It may not show up in this forum that way, but all my friends have heard it, and my head has heard it too much..

Sometimes I am appalled at how much our parenting is compelled by fear... by guilt...

I was able to see my Mom's guilt, and determined to not pass it on to my kids, though I do not think I succeeded...

I was able to see how my father's fear defined our lives, and determined not to pass that on to my kids, but I didn't really succeed at that either...

The Autism is a driving Fear Factor in our household.  We have inadvertently used it to try to motivate our son into meeting the new responsibilities and challenges he faces as he grows up.  We are afraid.  Afraid he will not be able to use a pubic bathroom independently (still.. at age 10).  Afraid he will not put enough effort into studies to use his intellectual potential. Afraid he will not be able to eat at a table of people without disgusting them.  Afraid he will make someone angry enough to hit back, verbally or physically.  Afraid he will lock himself up emotionally with fear and not let us love him and help him.  Afraid that he hates himself.  Afraid he will hurt himself.  Afraid he will hurt others.

Desperately, unspeakably afraid that someone will take him away from us, that someone will decide we just don't love him enough...

There is just so much fear.

We know he is a caring person.  He keeps the secret of the Tooth Fairy and Santa for his younger sister and children everywhere (even though he argues with her that fairies are not real).  He includes us in his daily story-telling as characters and in tat dialogue tells us that he loves us and understands our perspectives.  As always, he tries very hard to engage us in play.

While Autism looms largest, it is not the only fear.  Dyslexia is looming pretty large in our horizon.

We have allowed our fear that she will be taken advantage of to let us fall into that trap of saying the non-reader is lazy.  Our daughter is a loving person, aware of people's feelings, trying to figure out the universe in this skewed version she's landed in.  She loves movement, and struggles to hear and see like the rest of us.  She is teaching her brother invaluable lessons in bending to others, sharing space and time, and being family.  But we have hit a place where she is afraid she doesn't have what it takes, where she fear of the comparison that finds her lacking stifles her effort.  She copes with her people skills - she asks for help.  She acts helpless so that others will help her.

I am so very very tired of the fear.  My heart is starting to tell me that we have NOTHING FEAR EXCEPT FEAR ITSELF.  If we just play, if we just love them, won;t they know how fabulous they are? Won't they grow into the beauty we expect of them? Won't that really be all they really need?

It is easier for me on sunny days, but I am going to try REALLY, REALLY hard to just love them! to just PLAY with them! to just ENJOY MY CHILDREN.

I am going to set aside the workbooks and pressure.  I am going to LOVE them!

And I need your help reminding me of all this as we move forward.  I need you to remind me that loving people is more important than testing them, or molding them, or even teaching them.

And kudos to my parenting partner, to my husband, to their father, for helping me to rediscover the love in this journey on a constant basis.

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?

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.

On Christmas Movie Marathon Insights...

How to Train Your Dragon, Kung Fu Panda... yeah, we've been watching FX today

And it has led to some important insights....

"We need more of... this"
"You just gestured to all of me..."

Insight: People are a whole package.  Yes, we all have attributes, lists of those things that compose us, but we are a complete organism - a whole package.

People, humanity, seems to have a need to take things apart in order to put them back together.  We tend to label the components, looking for the exact spot in a system, the exact location of a glitch that we need to tweak or fix.  Industrialization seems to have moved us to a place where our most basic thought processes incline to interchangeable parts theory.  

DaVinci recorded a minutia of biological information in his studies of the human body.  The Portuguese led the way in conquering the seas through the myriad components of navigation.  The defeat of the Spanish Armada (ships sunk with ammunition on board because it didn't fit the cannons on board) led to an interchangeable parts mentality in the military, eventually championed by Eli Whitney and used in machinery production, from the cotton gin to the tractor.  The very basis of our economic machine is interchangeable parts - each new model of car has only one or two things different from the past one because its design is based on the components, the hardware that has already been produced - the molds and dies that have been cutting out fenders and pumping out headlights that have been stocked and stored in warehouses, waiting to be assembled... (think Johnny Cash, "One Piece At A Time")

But the sum is greater than the parts!  Identifying the parts does NOT define how they work together.  Interestingly, the most contemporary medical research is showing just how little we "get" that...  one of the most compelling "theories" that is shaping the way doctors practice is based on Microbiology - the idea that there are zillions of bacteria all over and in our bodies (that we are in fact only 10% human according to an article in the Smithsonian, July-August 2010).  I'm not sure if I read it somewhere or if it's just a "gut" feeling (pun unintentional but well placed) but it is just this kind of complex whole, sum-greater-than-parts, macro understanding that would explain why Autism is related to intestinal function (called the gut-brain connection that is talked about with the Gluten-Free-Casein-Free diet, and the autism-vaccine discussion).  
What if we are looking in the wrong directions, trying too hard to find pieces?

"The point is, stop trying to be what you are not." 

Insight:  What if we stop trying to be what we are NOT?  what if we start looking at WHOLES instead of parts?  What if instead of making lists of all the thorns and roses, we just accepted that they go together - that they are part of the same plant?  What if instead of weeding out my wickedness and trying to make sure people only have to work with my strengths I could learn to accept that they are flip sides of the same coin?  To me this is heavily related to the recent Pantene commercial about double standards - and the conversations about how Autism shows up in women.  When does assertive become bossy?  When does controlling the environment (sensory overload) become manipulation?  When does neat-freak become OCD?  When does the lack of flexibility & literal thinking translate into being a territorial b!t@#?  

"There is no secret ingredient!"

Insight:  Things are special because of their innate being.  The soup is good because it is the perfect balance of ingredients and methods.  It is good just because... it is good.  It has been through some refinement, some trial and error, and with practice each batch is consistently good.  There are no pieces missing of me either, or of you!  I am good just because... I am good.  I have been through some learning curves, but the more I am true to my ingredients and methods, the more consistently I am good.  Again, it is the sum of all the parts that makes the perfect soup, and me.  Finding balance and harmony in all those ingredients & methods makes the best me...  and there is no secret ingredient or magic cure or essential act or missing piece needed!!  I have all the elements I need already.


I have to say that I really appreciate the messages in these movies.  The hero saves himself - no damsels in distress or trying to counter the fates.  They are messages of fulfilling destinies - of encountering fates, learning to embrace the True Self.  And those Selves are NOT perfect.  Hiccup could easily be classified Aspergers (right down to the physical awkwardness), and definitely an outcast.  Po is considered the exactly-wrong-guy-for-the-job, adopted and doubted.  It is only when they embrace and exploit their differences that they can solve problems - and not just for themselves - but for those lives around them they touch...

I know every generation searches for its identity, tries to find those attributes that give it "a place in History"...

Is there a Big Picture connection here?  "Kid's movies" about self-knowledge and being True to Self... a rising number of children being labeled as so "different" they are Autistic... some of those children so different that they can't use words... some healers claiming that they can communicate empathically/ telepathically... some parents & psychics even claiming that we are witnessing the evolution of man...

That sounds pretty far fetched, pretty "out there"!

While the rest of the world was trying to make better candles, an Aspie invented the light bulb... a man who was partially deaf, didn't speak until older, dismissed by schools as a child for his inability to learn... the man who said, "I have not failed, I've just found 10000 ways that do not work"...  someone who devoted untold hours to a crazy pursuit, a vision only he could see... 

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...

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...

On suicide and regrets...

Post been going around: The Things We Do Not Say
[To provide context, the autism community is reeling with several suicide-murder attempts by parents of autistic children in the past weeks.  It has ignited much discussion over resources and how difficult autism really is, and responses from Autistic adults of how dehumanized these events and discussions make them feel.] 

My response:
Thank you.  You have found expression for what I have wanted to say.  To ignore the jealousy (of others's abilities) or the grief (over things you'll never have) is to ignore the very humanity of it [the experience of being disabled, of being human].  "Normal" people have struggled with these [emotions] for eons - as testified to in literature in all languages.  Is it any sin that those who find themselves "outside the circle" know it and wish differently?  I recognize that if my child was someone else [not disabled], we would just have different battles to face, other strengths and weaknesses and abilities to conquer and support.  I recognize that the richness of their life is determined by their challenges - but I'm not going to pretend that I don't like the challenges we got. To do so would minimize them, and minimize their struggle.  I will sorrow with them, and find strength with them, because THAT is what living is about...

I have really been arguing with myself about acceptance and therapy and compensation skills and guilt and what parts of me and my autistic kid and my willful kid and my husband are OK to live with, and what aren't.  Some Autistic adults are talking about how evil and hurtful therapy is.  How far are we supposed to bend to "socially acceptable", and how much are we just supposed to live with (accept)?

We (our family) have come up with the mantra: You can be mad, but you can't be mean.

As I have said before, part of the autism journey (for us) is seeing that we ARE like that too, remembering our own experiences of isolation and weirdness and sensory odd and uncontrollable outbursts...  It is only now, as we watch our children struggle that my husband and I are seeing roads to control these things in ourselves - alternate routes, if you will - driven by our need to equip our children to be "better".

I struggle with my self.  What am I worth? How odd am I? Where is "crazy"?  Where is "still ok"? What IS it that makes me strong?  What kind of strength am I supposed to have?  When do I give up? Why can't I seem to see what others see?  Why do things seem so hard for me that are simple to others?  How come I just don't "see" the same "sense" that others do?  Why do I do things that frustrate me and others?  How much of an abrasive personality is forgivable?  When am I supposed to stand up for myself?  When am I supposed to bow to the needs of others?  Who does value me?  What do they value me for?  Why do I care?  When will I see my own worth?  How do I find that value?  Are my thorns bigger than my roses?  Is my rose awesome enough to outshine all these thorns?  Why can't I be like the other people I see? 

I wish I was as self confident as...  
I wish I had the motivation of...  
I wish I could put the pieces together like... 
I wish I could just stop...
I wish I could just start... 
I wish I had the resources of...
I wish that wasn't scary to me...
I wish my body would do that...
I wish someone loved me like that...
I wish chocolate really was a vegetable...

I just wish things were different...

But, they aren't.  

I will have to live with whatever is dealt.  And I have to do it in a way that will uphold the principles I expect of myself and the responsibilities I have to others.  

In other words, I need to FIND a way to respect myself at the end of the day (or at least the end of the week).

Denying that I feel jealousy or confusion or grief will NOT help me find that respect.  Yes, I have to accept that I have flaws, and that those around me have flaws, and that my situation has flaws.  And I have decided (based on years of talking to people and reading lots of stuff) that every one, every life, every path, every being,  has $h!% happen.  All of my wishful thinking will not escape these feelings, just change the context, the details...

I have to find a way to genuinely assess (which is almost always done by comparison) that which I DO have, and then find a way to make it fit into what opens to me (finding successes through the regrets and wishes and if only). 

I have faced those demons, that place where I am convinced that I have no value, that my efforts are in vain, that effecting positive change around me is simply out of my ability, that I have outlived my usefulness... I have looked at the choice to commit suicide, more than once.  I have even made the effort more than once.  I am confident that I will consider how my death will improve the world around me again.  I am confident that I will be totally and completely overwhelmed with my failings, disappointed with my inability to meet my own expectations, again.  I will fight the demons again.

My autistic son, of just 8 years has already expressed this same sentiment.  It is terrifying to hear a 7 year old explain to you why suicide is an intelligent alternative.  He says to me what my own heart has said before.  We actually fought about it last week, again.  His behavior did not met what I needed of him... he was overwhelmed with disappointment in himself, and he reprimanded me for stopping him from attempting to drown himself.

I am sure he wishes he was someone else, something else, somehow better able to meet my expectations.  Will the world now say that it is my fault for having such "unreasonable" expectations of him?  Did I not "accept" him enough?  Or is it not my task, as a parent, to show him where the lines of acceptability are?  Don't I need to label and practice with him at home those skills he will need outside the home? - like resourcefulness, and hard work, and dedication?  

He may have to fight to own these skills in some arenas, even though his obsessive drive will make them a non issue in others... I know.

And it is only through open, genuine expression, and experience, of all the richness of human emotions that I will be able to face those demons with self-respect, to say to them that lows come with highs, and that comparison always has two sides, and that success in one place IS transferable to another (Aspie trait again!).

And I have to know that I am NOT ALONE.  Just as my son needs to KNOW he is not alone!  People, both like him and completely different from him have been experiencing these same feelings for EVER... and they will continue to do so.  I hope many keep saying What Should Not Be Said... so that we can find connections instead of deny them.