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.

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...

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...

Elopement - Drowning: A CALL TO ACTION!

So, to quote the statistics that I have seen traveling around Facebook today: 48% of kids with autism wander (elope).  Either 91% or 92% of those end in drownings.  These are not numbers - they are souls...

As I have mentioned in previous posts, I am a swim instructor.  I am seeing more and more students with subtle and blatant special needs because I am not secretive about my child's special needs.  I understand that my "expertise" is based on my Red Cross Water Safety Instructor training, my parenting insights, and my years of teaching experience.  My degree is in American History (just to be clear - I am NOT claiming more training than that).  I understand that my experience is inherently limited by the individuals I have had the opportunity to teach and learn from and may not be a numerically significant data sample.  I also understand that I work hard to interface with parents and be observant, and I am seeing changed behaviors and hearing parents that see skills improvement in their children after I teach them.  I am convinced I am doing something right and something important.

One local Autism support group (local to me) asked if there were any swim lessons specifically for special needs children, to which there is not yet any affirmative response.  As a parent of a "special needs" kids, my research has only ever uncovered private lessons (at least around me).  The complaints have always been that they are cost prohibitive (as most therapies and supports are since they are either not "educationally necessary", or not covered by insurance because they are "unproven") or that it is difficult to keep a consistent instructor.

I STAND IN A PLACE OF KNOWLEDGE AND FEEL COMPELLED TO ACT!  The loss of 3 children in one week is heart wrenching.  The reaction of "mainstream" media is accusatory and misleading.  Not only does the public need to be educated about the realities of Autism, the "public" needs to be educated about how it plays a supporting role in safety!! AND AUTISM PARENTS NEED TO BE ARMED WITH THE KNOWLEDGE THEY NEED TO TEACH CHILDREN.

1) I am going to go directly to my supervisors tomorrow and discuss how to create/ start a "special needs" swim lesson.  I am not convinced it will "make money" this year, but costs can also be measured in lives.  I am honored to work at a 4-H center - to be associated with an EDUCATIONAL organization.  I am convinced this is the right thing to do, and the right time to do it.

2) Adults AND children need to start having conversations about swimming and sensory experiences, and have access to that knowledge.  Swimming can not be seen as a pursuit/ sport of the "middle class".  Parents need to feel empowered to teach their child these life saving skills! The Red Cross originally established its water safety programming BECAUSE most drownings are preventable if people are knowledgeable!  People need to have access to supervised swimming experiences so that they have the opportunity to learn and practice water safe behaviors.  Look here for an earlier blog I wrote on the topic.  There are LOTS of ways you, at home, your family, can address that draw to water, and the disorientation it brings.

3) Communities need to start taking responsibility for shared safety!  Too often the parents of autistic children feel judged and accused - as if there is a direct correlation between some "epic parenting fail" and the child's "outrageous" behavior.  As amazing as it may seem to some people - all human beings come equipped with minds, no matter their age, and don't need your permission to use it.  The argument is often batted about that communities must pay taxes for schools because the entire community is responsible for taking care of it's children.  That idea does NOT stop at the automatic deduction.  I am counting on my community to keep my roads safe, to not set a fire to their yard, to stay home when sick... WE ALL SHARE RESPONSIBILITY FOR SAFETY!  It truly "takes a village" - because not only does my child need to learn to respect the authority of other adults - my child DESERVES to have other definitions of adulthood besides me. I am not perfect, cannot be perfect.  I sincerely hope that my child never feels compelled to carry my baggage, and I desperately hope that I can show my child enough examples of humanity/ adulthood that he/she actively CHOOSES the person they become.  It IS the responsibility of ALL the adults in the Walmart parking lot to watch for running children, to (patiently) remind them that it is unsafe, honor the rules about stopping for pedestrians and using cross walks, and MODEL SAFE BEHAVIORS.  It IS the responsibility of ALL adults to be aware of what is going on around them.  As a lifeguard, I am supposed to watch people.  It does not take long to see which kid on the playground goes with which adult, or to see that one is looking for the other.  I am NOT violating a parent's rights if I ask a kid where their "assigned grown-up" is.  I am NOT violating a parent's rights by stopping that toddler from dashing out the door.  I am NOT violating a parent's rights if I remind a child how to use a piece of equipment safety.  

Cuz, you know what? I am gonna need that help too.  My kid is a bolter, a runner, and we have lost him before.  And I DO need your help reminding him that he needs to stay with his assigned grown-up.  I too have had the unjust call of "inadequate parent" thrust before me, and had to find the strength to stop that ignorance from compounding my guilt.  

We have specific strategies that we use.  They might work for others, or they might not.  Cuz one kid with autism is just one kid with autism, and the resulting behaviors vary greatly.  I'll list some ways I have tried to help myself and help him help himself, just in case they are helpful,  This is as much a selfish effort to show I am trying hard enough as it is a hope to offer suggestion to any who need it.  I am sure that families of all 3 children that died this week used similar strategies...

1) outrageous clothes.  When they were little, I ALWAYS dressed them in red or florescent orange when we went out.  Not only does that make them visible to me from across a room, it makes them memorable to anyone who glances at them.  If they get away from me, people will be more apt to remember them, and for that exact reason, "bad guys" will be less likely to target them.  When we went to NYC (ages 4 & 6), I literally put rolls and rolls of curly gift ribbon all over their head (hair ribbons) and bodies (backpacks, shoe laces, back of jackets).  ridiculous? maybe, memorable? yes.  We ALWAYS dress as dragons at the Rennaisance Festival -with LOTS of sparkly fabric.  Twice we have lost him in the crowds as he meandered away to look at some interesting thing.  The first year I heard a bystander tell a security guard, "yeah! we saw this kid.. the whole family is dressed like him!"  The second time, as soon as we spoke to a performer/ staff member - they brought him to us, because we made SURE to show his "cool" costume to every performer we saw all day long.  We made our selves an obvious presence.  (this is really only useful if your kid will wear clothes - so for us it was only like 60% of the time until recently...)

2) over talking.  This is an auditory processing thing, and eventually a self advocacy thing.  Talking through EVERY SINGLE PROCESS, ALL THE TIME...  I often find I am doing it pretty loudly too, so that other adults are aware of my expectations for his/ her behavior.  And usually it makes it pretty clear that I, and my child, need that extra loving support.  "I am asking you to keep your hand on the cart in the grocery store.  Please look at the carts around you and try to stay on your side.  Those people want to reach the shelves too."  "You must hold my hand in the parking lot. I am taller than you, so cars can see me better."  "The people who own the store may get very concerned that you are not careful with things we aren't buying.  You may not touch it without asking"  "I see this person is trying to read quietly, so can you please respect their space and play on the other side."  "I would like you to stand away from the curb so that you do not fall into the street."  It is pretty annoying, but effective... and you get used to it eventually.  This ties into verbal count downs for us.  I am standing at the end of the toy aisle, "when I get to 10, it will be time to move to the next row..."

3) front loading.  Way explaining before doing anything.  Being sure to "practice" every activity.  Visit the dentist office before the appointment.  Making a fast trip to the mall just to read the directory, and then going another time to see a store.  Asking for permission to visit a space before an event to find all the bathrooms.  Explaining what it should look like if I am being a good audience member.  Explaining when it is time to listen (sit quietly) and when it is time to move around.  And this ties into visual cues ("you have to stay on the green part of the rug") and schedules/ lists ("after the lights come back on there will be lots of clapping, and then you can get up from your seat") for us.

4)correcting with validation.  That is REALLY hard when you are scared, but trying to understand what the kid was thinking, and show where the "disconnect" was in the decision making.  We lost him last winter, and had to really work to explain why we would be worried, so could he please be more thoughtful - and ASK before he goes out?  Once he heard dad say he was going to the grocery store.  He came out of the bathroom and couldn't find daddy, so he left to go to the grocery store.  We saw him outside, he came back in - and determined he didn't think to check the basement...  I understand that autism means he thinks differently, but unless we all communicate our thoughts processes, respect each other's intelligence, then we all just wallow in fear.

5) observation.  I have found that if I give him more room, he is more willing to push himself, so I spend lots of time actually just sitting back and watching him.  I also trust the dog to be watching.  Our dog has always alerted when the kids wander too far or a strange adult approaches them.  I always felt bad, like I was wasting time, but it so pays off to just really watch them, and how they interact with their environment.  I think all parents do that, I just think we get in the habit if doing it without consciousness - like a long car drive.

6) prayer.  He still gets away from us - especially now that he is old enough to go to boy bathrooms.  Ultimately - like every other autism parent - I am often just praying that his honed interest didn't distract him so much he is being unsafe...

But God's purposes, actions, do not always match ours.  Loss is horrific.  While I personally believe that everything happens for a reason, I also KNOW how hard it is to accept that, to not be angry with God.  Especially when that loss is compounded by ridiculous close-minded misleading accusations.

clearing myself for 2012

So I am going to try to empty my head of fear so I can make room for the hope...

My husband's work is directly involved with the Fiscal Cliff, so there has been little upbeat conversation around our parts in weeks...

I know that the upcoming year will include testing for my youngest's hearing & speech - maybe even more fights (with insurance, but maybe school too if she can't read and pass the standardized tests - they'll MAKE her come back to school).  I have not documented as much about our struggles with/ for her.  She is "NT" - BUT she has some slight hearing loss - didn't pass her hearing test until she was 6 months old - they told me it was because her ear canals are so small and were full of vernix.  So at 3, when I was concerned about speech, we went an Audiologist - who told me she had Auditory Processing Disorder, but that it couldn't be officially diagnosed until age 6 (just like all the ASD labels).  She went to school for about a year to receive speech services, but we pulled her out just after we did my son (to homeschool) because of the big political fight we went through with/ for him.  The speech therapist at the school told me her problem was an over sensitive gag reflex, it kept her from making guttural sounds.  Sounded in line with all the sensory issues her brother has, so I didn't think twice about it.  She has consonant sounds now IF she concentrates and slows down, but not in conversation.  I continue to be VERY concerned about the vowel sounds - she clearly just does not hear them in isolation...  We had an medical speech eval just this month (about to turn 3) so that it would be "evidence" for the audiologist that something is "not right".  This therapist seems pretty outraged by the not clearing her ears earlier as well as by the idea that "gagging" is her problem.  But this speech therapist is also moving in 3 weeks, so I don't know how it will play out.  I did get to hear an audiologist speak to a local ASD parent group - and he was ADAMANT that only audiologists can diagnose Auditory Processing Disorder (APD), and that it CAN be done earlier than 6.  I read a LONG book about it from the library.  It was VERY detailed and I don't think I caught all of it.  Guess I should read it again...  I am just anxious about what could be more fighting with the insurance companies about what treatments are funded and so forth.  I am VERY VERY concerned about her reading - and I am fearful that she will NOT pass the standardized testing this spring and the schools will put me on "probation" for a year.  But worrying doesn't teach her...

I am thinking we need to look VERY hard into vision testing for my eldest's - we are seeing some clear patterns come up in his reluctance to read.  He has read above grade level up to thus point - WELL above grade level.  But I have always said that I think he is photographic memorizing all this/ these words. - like every word is a logo.  There is plenty of brain-based-learning research that show that we all learn to read that way (that letter passed around the internet with just the first and last letters in place & the rest jumbled...)  He was able to read 3rd grade level books (lines spaced out) out loud to me last year, but when we moved to the 4th & 5th grade level (lines close together) - he protested MIGHTILY.  So with nearly a year of trying to up his reading - he is now loudly protesting that he cannot read at all.  I have talked to him a couple times about it, but since I can't get him to an eye doc I haven't really pushed him about it.  I was not entirely sure that he could get his face in that binocular think that he'd need to look into.  He did say yes when I asked him if the letters "move around on the page" - I have heard that description in other ASD resources.  I know that I personally have the problem that my eyes are not "level" in my head and I see "ghost" images of letters when my eyes get tired.  Maybe we need to look into reading glasses or vision therapy?  I don't even know what vision therapy involves, but I am betting it is not covered by insurance...

That kid also had a speech eval recently.  The speech therapist was concerned that he was getting nodes on his vocal chords from the way he was screaming.  Her assessment is that I need to get him to an ENT to visually check his vocal chords, that the way he talks is "odd" and stresses his vocal chords, but speech therapy would be no use right now because the sensory stuff is so off he can't hear himself making the noises.  She agreed that maybe voice lessons (singing or acting) could help him when he gets older...

I am anxious about what all this means financially and emotionally, for all of us...  I am aware that part of the reason he struggled in school was because I was deeply entrenched in a political fight and that stress affected him.  I get nauseous just thinking about the potential arguing... and I NEED to not borrow trouble!

I am particularly worried about the continuing fallout of the bullying that happened at school.  Here is a post from Facebook yesterday:
Just to be sure I document this... we had a VERY sad exchange with JT this past week...

We were tickle "fighting" when his sister got frustrated at him and shoved him. I reminded her that words are the most powerful resource we have and she needs to communicate with her words, not her body. (she is supposedly NT)

JT immediately and loudly burst into tears and screamed, "that is not true!!! I asked them to stop and they didn't!!!" I asked him if he was referring to school, and he said yes. I tried to explain that I thought the adults at school were NOT good listeners and were NOT doing their job of helping children be nice to one another. he then cried that he was a bad person for saying mean things back to the kids that were mean to him (which we did tell him last year, and IS true - even if his behavior was understandable). He agreed to "write letters of apology" for me to take to the school since I am not sure they will let him visit...

I think that even when we KNOW, we underestimate how much bullying affects a child... It has been over 1 year since we removed him from school...

I feel like I should contact the school leadership and let them know  what they have wrought!  But I am also very afraid to ever go there again.  And I do not believe in my heart that it will make a difference for the children who are still there...  Sadly I think we will just be swept under the rug, again. I would LOVE to offer my son closure on this - to let him go back to school n person and offer those apologies, but I do NOT think they will let him.  Or they will try to use it to force him to come back...

This year should also see some changing politics at my work.  There is a large potential leadership change or shift coming in this year.  I just feel like there are lots of loose ends, lots of unattached powers, waiting to anchor themselves.  I am anxious about how the politics above me will affect me, but also about whether I will be able to navigate the political winds effectively...  I have a habit if struggling with that.  I am wondering If I will "grow" professionally, and if I should be growing professionally...  the whole stay-at-home-mother, home-schooling, can-i-get-enough-therapy guilt is undermining what my heart feels to be a "correct" direction for me to move in.  I think that being a better experiential educator will enable me to be a better mother and teacher for my kids too...

I am also a little disappointed in myself. I want to "grow"/ strengthen my intuitive gifts.  I feel like I received a... message? reprimand?... about faith and doubt.  I am trying to sort through my head Truths I had thought resolved when I was a teen.  I guess that it would be time to revisit them if it's been that long...  I am able to legitimate when my son seems to manifest a "psychic moment" but I am just not sure I can do it for myself.  I have to say the Dec 21st thing has thrown me a curve.  My ASD kiddo had a weeping lesion on his face for 10 days prior (the whole mall visit thing) - and it resolved itself on the 21st...  One psychic I follow said she felt an up-welling of good energy that day.  I didn't...  

But the whole point of the Mayan Calendar is that the world started over, that we have reached a New Age of.... something.  

I am hoping that the new year is a new phase, a new place to be awesome, a new way of being for us, a BETTER way of being.  Unfortunately I am not sure what that looks like.  I am not "building the vision" in my head... I am trying to just be open to what manifests.

So here's to a GREAT manifestation!!!! or seven... ;)

On the Brain - to the extreme

So this is a reflection of my musings, NOT a research paper, so while I will certainly "cite my sources", I am NOT going to avoid writing this post because I can't find the exact place I read that info...

I have been reading a book about Brain-Based-Education lately - a book written for teachers by a teacher who was also a neurologist, and it has reminded me of several important points.

1)Brains "chunk" - meaning that a memory is created and stored as a "chunk" of information, not each little piece isolated in the head.  THAT is why Graphic Organizers work - because our brain automatically stores information in charts and Venn diagrams in our head.  I think this is particularly important in the "thinking in pictures" conversation started by Temple Grandin.  I know that even as a kid, when ever I am confronted with the need to locate a piece of information in my head, I actually visualize the page I saw it on - which puts it in with the "chunk" of information it "goes with" already.  The book also talks about "chunking" in terms of sensory input: one remembers a food's smell and texture as well as appearance, and usually the context of the food (celebratory dinner or school cafeteria).  I am not entirely certain why my head is holding on to this as Important, but I just think there is an association to be made somewhere in the SPD discussion...

2) All information must enter the brain THROUGH THE SENSES.  While that seems pretty clear - it again leads me to really wonder about the effect of SPD on function and global brain wiring. Is the "different operating system" that we see in our ASD kids what creates the SPD, or is the SPD what creates the "different operating system"?  I don't really know if this question is relevant, unless we are looking for the cause-effect relationship that we can reverse, or at least... monitor?  I feel like there needs to be MORE looking at this senses - brain wiring relationship.

3)The author makes it clear that METACOGNITION trumps brain-based-teaching.  So, regardless of how much empirical data is collected, of the statistical evidence we have, of the trends that we see playing out - how well a person knows their own mind is more important than any effort on my part to meet the data.  The best way for a student to learn is by the student understanding their own thought processes, seeing their own trends, knowing "what works for them".  Ultimately, this says to me, that if the person is just different, there is nothing you can do about it! - they HAVE TO teach themselves (which is exactly what Montessori says).

ALL this brain-based-learning information keeps mixing in my head with what I have read about Nuero-feedback/ Bio-feedback.  What I read indicates that the process is hooking a person up to see their own brain imaging so they can consciously associate sensory experiences with certain mathematically measured "states of mind" - in other words the "patient" can see directly in the monitor when their brain-waves are within a certain range ("normal") or what parts of the brain light up (get used) to perform a task.  I think the idea is that by seeing how your brain works it gives you the opportunity to better control it - to "make" areas light up or brain waves be within a certain range when you "feel" a certain way in your body.

Is that Metacognition?

I also had the opportunity to take an all day seminar on mediation with the Smithsonian recently.    He had a lot to say about meditation's affect on the brain.  I believe his effort was to "prove" that mediation "works" - but ultimately all that is proven is that the physical shape/ construction of the brain IS altered by meditation - specifically the parts dealing with sensory awareness and attention to detail.  I think reading into the studies he cited also shows this metacognition piece, that a person in "control" of their mind processes can decide when to turn them on and off (like when to socially engage or linger in anxiety)...

And now I am caught in a conundrum:

If the senses are the window to the mind, and we are saying the senses are catching a reality different from the rest of us for "normal" people, then how do we know if we have reached the mind of the autistic person?  Do we have to actually alter the mind of the autistic person to the point that we can recognize it?  As in, do we need to make the ASD person less alien to us in order to recognize/ respect them?  And should we be changing them to recognize them? If they are, in fact, a different operating system, if they are, in fact, wired so completely alien to us that we have a hard time recognizing them, then shouldn't we respect that they were divinely created so?  If God "made them different" - whether by disease or genetics - how much are we supposed to leave that alone?

Is THAT where the spirituality comes in?  That we are "communicating" - connecting - through LOVE instead of our physical bodies?  Instead of our physical bodies?!  THAT sounds pretty darn close to what I am hearing postulated by the 3 psychics I have found on Facebook that "claim" to communicate with ASD kids for their parents.  That's 3 different people, who came to this through 3 different journeys (NOT through each other, as far as I can tell)...  I have heard the claim that ASD people ARE aliens on their own bodies (from a higher "frequency" or "plane"), have even felt that way numerous times about my own son.  I look at him often and just know that he is truly beside himself, not in himself... like he is manipulating his body through a marionette...

At what point DO I cross that thin line between crazy and genius?  Does only HISTORY get to prove who is crazy and who is genius?  Thomas Edison, Leonardo Da Vinci... those guys were crazies of their times, and seem geniuses to us...

Dear God, what if that IS what this Autism Phenomenon is all about - about pushing our collective envelope of crazy so that when history unfolds we can see the geniuses!?  I am NOT sure I want to be around for that!

BTW - my son has claimed in several meltdowns in the past month that the only thing that matters is who will live or die at the end of the world...  He uses this to explain to me why he does not need to eat with a fork or wear pants or touch the cart at the grocery store - what ever direction it is at the moment he does not deem important enough to follow.  I sure hope he is WAY off on this one...

I am secretly hoping that someone will respond to this and demonstrate the Great Flaw in my reasoning .. PLEASE

Further on SPD and Swimming

Time to follow up on what I published earlier this year, to be specific about how I see SPD playing out in swim lessons.

Incremental Learning/ building physical tolerance

Much like Sensory Integration therapy (SI) - the student has to be exposed to the stimuli many many times over a long period in small steps - in other words: GO GENTLY.  With swimming in particular, parents become VERY invested in seeing success, because it is a safety issue.  There is a cultural perception that swim lessons will "drown-proof" a child - and that is simply NOT true.  It is VERY, VERY frustrating to watch a child be so afraid or reluctant that they do not perform the "assigned task", but the point is that their body HAS to teach them. There are 2 main factors in this dilema: parental expectations and the length of traditional classes.

Don't get me wrong - this is NOT a "preach at the parent" moment - this IS a learning moment.  Really ask yourself - WHY  did you enroll your child in the class?  What IS it that you expect your kid to get out of swim class?  Many parents are enrolling their kid in a swim lesson because this is one of the child's first experiences with "formalized schooling" - They expect the kid to be able to hear and perform the instructions of another adult and be in a group of peers.  Swim lessons can do that - but the adults around them have to remember that this experience is compounded by the novelty of being in the alien environment of water itself.  Maybe the parent's goal IS to teach or hone life-saving aquatic skills (make them better swimmers).  If that is the case, then watch - observe, and remember that teaching is most successful when it comes in digestible pieces.  What skills ARE your child lacking? Which do they already exhibit?  Do they have the motor control to actually do that movement?  The hardest part of swimming is that the body is performing several tasks simultaneously, often alternately - so it's like patting your head, rubbing your tummy, chewing gum, and keeping a rhythm with your toes and then switching every 7 seconds.  There is a LOT going on there! 

BE PATIENT.  

That is hard to do with your child under any circumstances, but especially when you are so concerned to see that progress that will make you feel confident about their safety.  Like the adage of special needs parents - celebrate the small successes.  Focus on just one skill at a time, submerging, flutter kicking, breast stroke pull.  Even at the competitive swimming level, this is what they are doing - concentrating on the minutia of a movement until it becomes MUSCLE MEMORY.

And that is where the length of the class is a problem.  Traditionally swim lessons are 8 1/2 hour sessions (that is what the Red Cross curriculum is set up for) - so 4 hours of instruction time.  Think carefully about that.  What skill did you learn in just 1/2 an hour?  Have you ever mastered a new skill in just 2 weeks?  Middle school classes are typically 45 - 55 minutes, and it takes kids 9 months to "master" a topic!  Having realistic expectations about what your child will take away from the class is VERY important, as well as understanding that it is just a starting point.  A 1/2 hour class is not really long enough to allow the kind of practice that builds muscle memory - it allows the kind of practice to explore.  And the hard truth is that while there are "correct" processes and movements to swimming, each and every body swims in a different fashion.  I can't tell you how many parents come to class concerned that their child can't float.  Well, if your kid is finishing a growth spurt and has no fat to float on, then you're right - that kid won't float - at least not flat.  The kid needs time to explore their own "center of bouyancy" - which is not the "center of gravity".  Your kid has been trying to coordinate their arms & legs to run and play for several years by the time you hit swim lessons - and now the water moves the center of their body!?! CRAZY!

Remember too, that "success" is about visualizing too.  It is known that athletes visualize their actions, and that it can greatly impact performance.  The truth is we do that for ALL activities.  In the special needs world (and experiential education) we call it "front loading" - letting people know what is expected of them before they engage in the activity.  "We are going to the grocery store - you are expected to touch the cart at all times. You will not be getting any candy or soda today."  "We are going to pass this hula hoop around this circle without letting go of each other's hands.  You will have to get your feet and legs through"  "You are going to chaperon this field trip.  Your role is to keep your student group together between formal instruction sessions." - It's about making expectations clear, about making sure that the person doing the thing can see themselves doing the thing before they actually do the thing.  As adults we use this skill all the time, because we have been taught it and had plenty of time to practice it.

Kids need that too.  They need to see the swim skill demonstrated, and then they need to practice it so that they can feel the movement (it is hard to see underwater, but it can be a useful tool to do so with goggles for strong visual learners).  Moreover, they need to think about doing it.  The biggest bursts of success I see are when the classes are a week apart.  The kid has had all week to talk about the movement, listen to parents encouraging the movement, interact with the movement in their head - and they demonstrate a better mastery of the skill a week later.  The extreme example is my own son.  For 2 years he would walk up the diving board - in a life jacket - look at the life guard and say loudly, "Don't worry! I am not jumping in! I am just looking!" - and he would.  For 2 long summers we watched him do this several times a week.  I REALLY wanted to throw him in, to just get him over it (and I did a couple times and would see regression - he wouldn't go on the board as often), but eventually I just left it alone (he was in a life jacket).

Finally one January (clearly NOT pool season), he says to us, "This is the summer I will jump off the diving board." - very matter of factly.  Ok, we'll see..., but we did talk about it all winter.  Sure enough, May came and the pool opened.  We went opening day, and he walked to the board several times, but not up it.  After 4 hours I finally prodded, "So, is this the summer you are going off the board?"  "Yes"  "Do you want to go now?" "Not yet" "Ok, how about at 3 o'clock?" "Ok".  Two minutes later: "Is it 3 o'clock yet?" "No, not yet" - two minutes later: "Is it 3 o'clock yet?" "No, not yet" - two minutes later:"Is it 3 o'clock yet?" "Yes [fine!], it is close enough".  He marched right up to the board, walked to the end and jumped off - no hesitation, no life jacket.  This example is pretty extreme, but if you just sit and watch kids at a pool, they do it all the time.  They see if they can submerge a little deeper, or jump in a little deeper, or even just run farther before they jump in (which is not a safe behavior, I have to add).  As I watch families visit all summer, I can see a kid move to a deeper section of the pool with each visit, pushing themselves to grow skills, to explore new movements, to go faster.  We often see it with the "jumping into chest deep water" activity.  A student starts at the chest deep depth, and will do it several times during class, and then after class work themselves down the wall to deeper water - often for over an hour.  If they "scare" (I like to say "surprise") themselves, they go shallower for a few minutes, but they always come back to conquer the goal they set for themselves. 

The best way to support your child's ability to swim is to come to the pool often so they can practice on their own terms. That kind of learning is self-teaching - the brain and body will remember it longer - but: 

IT TAKES TIME.  

Language

I have often said that the strength of SPD discussion to me is that it provides me a language to describe what I see.  Being able to verbalize your fears always makes them more conquerable.   It also allows us to be specific.  And the seeking/ avoiding aspect of SPD lets people make correlations between their actions (or the actions they observe in others).

VESTIBULAR: This is that sense of balance in the inner ear. One of the most mentioned concerns with teaching swimming (by concerned parents and in training tips) is reluctance to float.  When I see that behavior in toddlers I immediately ask if the child has reluctance to tilt their head back for hair washing too (a textbook example of a vestibular avoider).  How about swings?  Does that kid who is reluctant to float avoid swings too, or demonstrate a low tolerance for them?  Adults do that too - by avoiding roller coasters.  Or is your kid a vestibular seeker? Do they hang off the couch upside down often? (Yeah, I totally did that as a kid, and knew it made me "feel " better, but not why).  Are they having trouble floating because they are busy turning over/ feeling their body move?  Once we can identify associations outside the water, then we can "treat" them/ "practice" them outside the water.  My son definitely conquered being horizontal in the water (the major milestone of successful swimming) by conquering swings through the winter. And talking about what they are feeling, gives them more control over what they are feeling.  

I did an interesting experiment on my husband - who is amazingly physically awkward (visually so).  At 40 years old, he had never floated, so I asked him to lay in the water while I supported him.  He did (BIG trust moment), but the insight is not that grown-ups have sensory issues too - it's that he is old enough to describe to me what he felt.  After floating for no more than 2 minutes, he stood up and weaved on his feet for nearly 4 minutes.  He did say that propioceptive input (hugging and submerging to the shoulders) helped him "re-center" and be able to walk straight again.  While this example may seem extreme, consider that he has gotten though his whole life without ever having to deal with this sensation.  If your kid doesn't like laying in the water, or swings, or vestibular input, they may be having this extreme reaction and can't verbalize it to you!  Help them build that vocabulary.... "Hmm, does laying in the water make your head feel like it is spinning?"  "Are there circles inside your head?"  "Does the swing make you feel like it is hard to stand up?"  "Does it feel good to hang upside down?"  Use your instincts - think about what YOU experience, verbalize YOUR sensations, and give them room to disagree with you!  Their body is theirs, and maybe they feel something different, but by opening the discussion, you give them the room to label their sensations, compare them,  conquer them.

PROPIOCEPTION:  This is that idea that the joints register pressure in the nerves to define where they are in space.  The theory explains why kids trip over their own feet, or hit too hard, or don't like being hugged.  As adults, this often at the heart of a couple's cuddling debate.  In therapeutic use, we use it "center" the body, to calm the "hyperactivity".  It is the exact same "technology" that the "Thunder Shirts" for dogs uses - and that swaddling babies uses.  It comes into play with water because - water is heavy.  I have read in one occupational therapist's Facebook [Raising Sensory Smart Kids - a book too] that many propioceptive seekers submerge to feel the water "hugging" them.  I would imagine that propiocetive avoiders (I don't have one, so I have to extrapolate here) are bothered by the weight of the water on their body, much like a weighted blanket would feel like it entraps them.  Validating these sensations with vocabulary, with labeling them, creates a skill to build instead of a vague fear to avoid.  The body will still need to be dosed in small increments so as not to overwhelm, but the process (and oration of that process) of creating small goals and meeting them will empower the learner.  "Does the water feel like it is hugging you?"  "Can you feel your hand pushing the water against your legs?"  "Do you feel your feet coming out of the water when you kick?  Try keeping them in the water..."  "Let's try submerging just to our belly button... just to our elbows... just to our shoulders..." 

2 points/ asides about this: it is because the water is heavy enough to feel like a blanket that it is strong enough to hold you up when you float - it IS denser than air, and that density is what pushes the body.  I also noticed with my son (who is clearly a propioceptive seeker of incredibly awkward body movements) that his body moves more gracefully, more purposefully, with more coordination after we have spent weeks in the water.  We usually spend a full 6 - 8 hours at the pool several day a week during the summer, and he is by no means in it all day (like his body hits some kind of plateau, but he always comes back to it. As if his body is learning by the comparison?)  I would postulate that the extended opportunity for him to learn & practice movements, at his own pace, to control his environment and keep "pushing that envelope" ingrains that muscle memory piece.  Seekers are known to need more stimuli to register a sensation and the water gives a constant increased "pressure" on his limbs as he moves in it.  Our OT has also pointed out to us that he is much less "bouncy" during summer/ swim season - and we see the furniture bouncing and body slamming return when the pool closes.  Of course, the kid's body grows every winter and he "loses" his body and has to "redial" it in again every summer...  I urge you to look for/ observe patterns in your child.

TACTILE:  There are 2 aspects to this that need to be explored.  One is the sensation of water on the skin.  I kinda think that one might be linked to propioception - like the difference between being brushed up against and banged.  Water tends to be gentle - so maybe the movement of water on the skin really does "tickle" people?  I don't know that I have ever heard someone say that in those terms, but I think it is a strong possibility.  Again, incremental exposure is the best "treatment".  People learn to not be ticklish - or at least control their reaction.

The second has to do with water in the face.   I am not sure that "tactile" is the best category for this, but I am not sure where else to categorize it.  This is a complicated discussion.  It is absolutely normal to react with anxiety when the face is covered in water (like submerging the head) - I would argue that it is an instinctive life preserving reaction.  In fact, we take advantage of that when we teach the Mommy & Me swimming.  Infant's bodies automatically hold their breathe when their face is wet or blown into.  We reinforce that instinctive response by counting down to submersion and praising its accomplishment - moving the unconscious act into conscious control.  I think it is a similar thing as you get older - about controlling your body and environment, about creating consciousness of what the body does without our thought.  This is a pretty deep thing.... 

I have 2 insights, kinda techniques, that I have used to address this.  First: when I was very small and my grandfather taught me to swim, one of the few things I remember distinctly is when he talked to me about coming up out of the water - like when you are pulling up on the side.  I remember him directing us to look down as we came up - and he explained himself: the water can only flow down, so if you are looking down, then it cannot flow up to your mouth, nose, or eyes.  I have a vague memory of him saying it would get the water out of our eyes faster.  I have to say I have done this as long as I can remember, and that I remember thinking as an older child and as a competitor in high school that it gave me a sense of control when I was pushing my envelope (longer swims without breaths) - I knew I could get air.  In fact, this is really what breathing during the front crawl (freestyle) is all about - using your nose to create an air pocket for your mouth as you turn your head.  It's about controlling your body to control the water - knowing you are in charge, not a victim of the water.  This kinda leads to my second technique - the shower.  I often recommend to parents to "practice breathing techniques" in the shower.  While some people are rather defensive that their kids can take a shower, what I mean is that submersion of the face can happen in the shower.  The example I give about my own kids:  I was afraid they would squall during baptism, so I spent several weeks dousing them with water.  I started with sprinkling, but then I would pour a half a cup, and then a whole cup directly over the center of the head.  They instinctively held their breath, learned that it ended shortly, and actually started to look down to protect their face.  Anyone can practice this in the shower.  I find that I tend to spend most of the time in the shower with my face out of the water, but you can actually practice the whole looking down thing in the shower by putting your head squarely in the spray - gain control of what is happening/ start with the familiar and slowly add new sensations [EXACTLY what SI therapy is about].  Once you're OK with it, you can even play with/ adjust the angle of your face and test new sensations...  

Interestingly what most kids and adults I have worked with do orate is that they are uncomfortable with the sensation of "water in their eyes."  You can totally practice getting water in your eyes in the shower!  And the water in your shower does not have chlorine in it like pool water....  Though in all honesty, it is NOT the chlorine that makes your eyes burn - it is the pH of the water.  And the water from your shower will make your eyes burn 'cuz the pH is not balanced (in the middle of the spectrum)... if you can handle opening your eyes in the water in the shower you can totally handle it in a well maintained pool.  Even without the chemistry lesson, it's about controlling how your body reacts to stimuli.  If water in the eyes is the problem, then address it, in a place where you feel comfortable/ strong - in a manner that gives you a sense of control - appreciating each small success as you build it - and it will lead to you being confident that you can control your environment in general - and you will control your reactions.

And THAT is my point!  It is ALL about breaking down the steps and building up the experiences so that confidence is gained - because CONFIDENCE will create a safe swimmer - fear ALWAYS leads to sinking.  One of the primary safety rules the Red Cross teaches is:

Think, so you don't sink!

And the SPD conversations give us a new perspective to think from, because the answers do NOT always lie in the pool!

Community in the past?

So, I am a Challenge Course Facilitator - that means that I have the job of that guy in the dreaded "team building" activity to mediate the trust fall and then blow sunshine up your butt about it no matter what.

Actually, I am NOT that kind of facilitator.  I make it a point to never ram sunshine anywhere, though I have learned to be more tactful and less critical in my expression of my observations... ;)  I seek to connect information, and I have yet to pretend a group is nicer to each other than they actually are...

So there are many aspects to this that I need to to continue to explore, to grow, and that are VERY VERY relevant to how I raise my Aspie, including my insights about teaching by "front loading" and then "processing" experiences to milk them with reflection.  It is how we deal with Autism EVERY DAY...

But I am thinking tonight about a specific event that occurred this summer.  We have an element (that is like a "station", a specific activity/ obstacle that we have on our "low ropes" course - and no, there are not any real ropes at most of them) called the Trust Fall.  It is a platform about 4 feet off the ground, upon which a person stands, their feet on the edge, facing the center of the platform, and then they fall as a plank into a group of people (peers).... so it is exactly what the name implies.  A person participating in this activity must fall in a trusting way, with complete trust (if you don't trust and you sit, you will hurt the holy snot out of yourself and the people trying to "catch" you).

I have recently done this activity with a group of high school students.  They did well, with each other, with me, supporting each other physically and emotionally so that everyone had the chance to physically feel their team supporting them in a moment of ultimate vulnerability.  While it was awesome, that is NOT the interesting thing that occurred...

There was a teacher with the group, a man who had enough years on him to be well-versed, a man with previous military experience, probably old enough to be a grandfather... and what he said to his students was AMAZING  to me!:

"This was a difficult task for you all, but 15 years ago it would not have been.  15 years ago, before the schools were so competitive, youngsters like you would have had complete faith that other people would be there to catch them."

The man had told me that his wife was a classroom teacher as well.  And the students had talked about how they could totally have done this activity into the pool, where they knew the water would catch them, but that they could not do it with peers underneath them, they just weren't "sure" they'd be safe...

There are some of you reading this thinking that the kids on the platform are RIGHT - how WOULD you KNOW someone is there to catch you?  but I think I see the teacher bringing up an interesting point.  Those students would rather put all their trust into an inanimate object than a thinking, sentient human being.  It's like trusting the ATM more than the teller at the bank, or seeking the do-it-your-self check out line at the grocery.  There comes a place where we isolate ourselves in an effort to ensure rote behavior rather than go through the painful process of unpredictable human interaction.  

Boy! Does THAT sound like Asperger's?!  

And it is not just something that comes up with public interactions, but within our most intimate relationships - seeking the "traditional" /"romantic" interactions rather than truthfully considering exactly who and what our partners and family members need or prefer.  "We will just get your sister something pink for her birthday" or "Let's go to dinner and a movie" or "Daddy wants us all to spend time with him for Father's day, but Mm wants us to give her space".  Stereotypes - that are NOT absolute Truths...

I mentioned this teacher's insight to my mentor, and her response was, " I wonder what else was different 15 years ago..."  Well, even in the movie E.T. the kids could get on their bikes and ride away from home without anyone assuming they were runaways or hoodlums.  When I was little, my mom would ask my brother to "run around the block" 5 times before coming inside to help control his energy - as in he was trusted to go out of her immediate sight and no one thought she was delinquent.  I have twice been "reminded" of the "safe child policy" at our local library (which is only a 30 by 30 foot space) because each of my 2 children wished to go to different sections and I couldn't be in their immediate line of sight at the same time.  15 years ago the Girl Scout program was based on 5 Worlds and exploring them, now it is down to 3 themes, with less than 1/3 the available badges - you know - kids just can't "handle it" these days.  If my dog accidentally gets off leash and takes a "walk about" (from which he will of course be home in less than 2 hours) We get nasty calls from the neighbors instead of them encouraging him to "go home".  What would they do with Lassie?!  My Sensory Kiddo/ Autistic son has real issues wearing clothes, but if he is in HIS OWN YARD naked (aged 3) my husband is worried that the neighbors will call Social Services on us [if you have EVER been through potty training with a kid like that, you understand why he just needed to be naked to get it!]  When I slap my child's hand, I am formally reprimanded by the school principal.  When we were trying to figure out how to deal with transitions and make a universally "safe" place for my autistic son - he took ownership over the car - it was his, and he could stay in that protected place.   To get him out of the car to go in the store used to involve long and arduous amounts of prying and cajoling and threatening, often pulling him out the car only to have to plaster his body between me and the car to be sure he didn't run away - and all that is caught on the store's security camera and we lived in literal fear that we would be turned in for abuse - but to let him stay in the car is to be turned in for neglect.  How the hell was I supposed to get groceries?  The only solution was to go in the middle of the night, slinking around like a social derelict (or drunk college student) while the other parent (hopefully) had him sleeping at home.  Would I feel like my neighbors were "out to get me" for bad parenting 15 years ago?  Or would they have offered to help shoulder the load (instead of just criticize)?  I have asked every high school aged kid on our street to babysit in the last 5 years - and for every one of them the parents have discouraged me, saying they would not trust their own kids to babysit.

We, of the parents-of-spectrum-kids community OFTEN say that we find those who identify with us in far away places - SELDOM in our geographically local communities.  Would it have been like that 15 years ago?

Did the schools respect an informed involved parent 15 years ago?  Did the teachers listen to what worked at home and explain what happened at school?  Were parents welcome as volunteers to observe and participate in their child's education?  Did we villainize people who needed assistance? or did we actually just help them out?

have we REALLY lost that much Community in 15 years?

The Art of Intuition

ok - so this is the title of a book - and I TOTALLY think EVERYONE should read it!

So I have been feeling for the past week that I really NEEDED to read a book - to the point that I asked my boss for assigned reading.  I just knew I needed A book, didn't know which one...

So I meandered over to Books-A-Million this weekend - thinking I'd look for yet another book about Asperger's... and somehow ended up in the "Self Growth" section of the store - which I had never visited before.  I picked up this pretty little book with a blue butterfly on the cover.
"The Art of Intuition"... I think that cover looks familiar, I think I read this one before. I put it back, I kept looking.  I picked the book up again to look, and again felt like I had already seen it, so put it back.  I kept looking... and when I looked in my hands, I had "The Art of Intuition" in it AGAIN.... so I figured I must need it.

Got home, started reading it. I have NOT read it before, but it was so compelling that I finished it that night.  It opened some windows of thought and I'd like to see if anyone else has looked at these...

First of all it reiterated several "world view" kind of ideas I had come to completely on my own, about one-ness with God and the presence of Spirit.  Odd that I came up with it by myself when someone else did too...

Talked about Nuero Therapy - that one therapy where they hook you up to an EEG and tell you when you have particular brain waves so you can "feel" to and recreate it purposefully - it sounds almost like meditation with an EEG so you can actually "see" what your brain is doing... Interesting thoughts here, to me:

The book says that the beta waves (associated with analytic thought) occur in the frontal lobe of the brain - interestingly studies of Executive Functioning Disorder indicate that the same area of the brain does NOT light up in many people with ADHD and ASD...  Those waves that are associated with sleep (theta and delta waves) are seen on an EEG when someone is meditating, and have been recorded while people have been claiming to have an "intuitive episode" in progress.  They tend to light up in the rear portion of the brain - a pattern ALSO seen in ADHD and ASD patients...

One survey indicated a statistical correlation between those who report allergies and sensory sensitivities and intuitive abilities...  Funny how many reports I have read attributing ASD behavior to allergic symptoms (from PANDAS to the new "inflamed amniotic fluid" idea to GFCF diets, to processed foods, etc.)  And Lord knows there is a MAJOR sensory component to ASD behavior...

As I laid reading the book in front of an open window, I shivered and thought maybe I should go get a blanket.   I dismissed the thought, I was too engrossed.  About 1 minute later my ASD son was draping a blanket over me brought up from the basement... and then he left - unusual of him to not seek "propioceptive" cuddling...

Psychic for Special Needs families once asked on her Facebook page if maybe the "autism" is the outward symptom for intuition, or if intuition is a side affect of autism...  

I am thinking the link is PRETTY EVIDENT, even if we can't put our fingers directly on it!  It's like being able to calculate the presence of a black hole because you can see the affect its gravity has on neighboring planets even if you don't actually pick up the black hole visually...