Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Friday, April 12, 2013

Does it make me human? or Aspie?

Today, I was not needed.

My children got to therapy, dinner got cooked, sunshine was enjoyed, and the everyone is clean.  I had nothing to do with any of it, because today I worked all day.

And I really was not needed at work either.  We trained today.  We learned some new games, and reviewed lots of old ones.  We helped some newbies get a swarm of info, and I shared some insights that were hopefully valuable, but I was not needed today.

I am, at heart, an academic - a student of how and why people get along.  I love challenge course work because I have a microcosm of experiment in every group.  But, I am NOT an athlete.  There is a significant amount of physical effort and activity in challenge course work.  I am capable, but not as capable as the younger people I work with...

Every year, training makes me feel that much older, that much less capable, that much more disabled...  I am SO very frustrated that my body does not perform to the level it once did.

I was not needed today.  I was allowed to participate, allowed to offer insight and opinion, tasks were created for me to do, but I was certainly not necessary to the learning that was occurring...

And this really shouldn't be a "problem".  I mean why should I be needed?  I am going to grow older, it cannot be stopped.  My pain will eventually stop me, I have always known. We have worked for years to create a capable and competent staff, and my boss is a friend who actively uses each of us to our strengths. I want my children to be independent and my husband to be a capable caregiver (for his own sake of confidence and because my children deserve a capable male role model)... it is really a great development that I was not needed today.

So why do I feel like crying, but don't?  Why do I just wish desperately that my kids would just cuddle up with me?  Why do I feel like I should just go hide in bed?

'Cuz I just want somebody to want me?

If I'm not needed, will I be wanted?

Outcast, outsider, never-quite-right, just-not-the-same... I am not really sure that I have ever been wanted.  My parents want me, love me, but I am a grown-up now and my job is to be independent, to be a contributing member of society right now... I have had to forge a place for myself, create a niche for myself everywhere I have ever been.  I do not know that I have ever really truly believed that I am "wanted".  Tolerated, yes, even enjoyed by some, but not sought...

So finding places where I am at least needed helps...
but I wasn't needed today.

Funny that this being different, this standing-outside, this just not being completely with-it, is part of what so many autistics talk about.  I thought it was just part of being human... isn't that why it is a universal theme in literature?

The parent group this week had a speaker, a local professor who is Autistic, with a son who is Aspergers.  He had some interesting statistics, and postulations.  By his research, there is at least a 48% chance that if a child is autistic at least one of the parents is too.  As their family described their experiences, I heard a mirror of my own, generations of "academics", labeled "gifted", being some where outside the norm, intense bullying with academic success...

I actually labeled my self as Aspergers today with my peers (at work).  They were totally accepting and non-pulsed.  No surprise.

So am I feeling like an outsider today, less useful today, because no one really needed me today? or because I finally, openly, labeled myself with a "disability" today?

I really just want a hug... I just want to know that my family loves me... that regardless of labels or aging joints or decreasing mobility or increasing pain, I am valued.

Is that what makes me human?

Sunday, April 7, 2013


Part of the reason I really love what I do is that there is an intense level of interaction. I am receiving insights from those I "teach" as much as I am offering them...

Yesterday I worked with a group of gentlemen who are on a church retreat.  They were seeking shared fellowship - and they got it.  They were FUN to play with!

But part of my job is asking, inviting, encouraging them to be reflective of their experience.  After a blindfolded trust walk I was schooled.  They were in pairs, one blindfolded, the other muted...

We traipsed through the woods, down stairs, through shadows.  When we stopped, one of them said, "I totally forgot that I was allowed to talk when I was blindfolded."  There was a chorus of agreement.

"This is totally personal, but you can see that my hair is blue.  It is Autism Awareness Month, and my son is diagnosed with Autism.  You have given me an important insight.

We often see a disability, but we forget that very few disabilities are global.  God creates everyone with challenges and also with gifts.  It is how the body of Christ works together.  How the puzzles pieces all make a whole."

The power of these words haunted me through my sleep last night.  The Holy Truth therein has humbled me again.  I am particularly frustrated with my child's behavior this week.  Am I just not being patient enough to see let his gifts manifest?

Also read a story by Stuart Duncan this morning- a blog about his road to diagnosis - through his child.  A road I am on too.  The more I read, the more it is clear that I am as autistic as my kid, and generations of my family have been...

This month seems to have heightened the screaming match between adult autistics advocating for themselves and parents of autistic children advocating for their children   Should I seek a diagnosis so that my voice is ALLOWED to be as loud?

Tuesday, April 2, 2013

Autism Awareness Day

I was 13 years old.  It was a youth retreat with my church - my first & last.  One of the things I came away with from that trip was that I just wasn't "sinful" enough to really need to go to youth group...

I grew up a member of a Charismatic Episcopal church in Southern California.  We used the traditional hymnal and liturgy, with lots more singing and laying on of hands than I've seen in any congregation since.

On this particular retreat, the younger priest/ Father and an adult youth pastor were praying for all of us, standing in a circle around the recipient of the praying, each member in turn, as they desired.  When all the Holy Spirit granted visions and sharing was done for each person they collapsed amongst us, overwhelmed with the Presence of God.

I wasn't sure.  I mean, I had already taken lots of ribbing from the other kids because I hadn't stolen anything or broken any major rules, and the whole collapsing thing just seemed a bit much - but the priest was telling an older (college age?) girl that she was worthy of God and just needed to be open, so I worked up my gumption and stepped into the circle.  I mean, I want to be that loved too.

They all laid hands on me, and then the adults shared the visions the Holy Spirit inspired on my behalf.

"I see a puzzle piece.  It is changing shape, trying to fit into it's spot.  
Just be yourself, you will fall right into place."

These are the only words I remember from that night 
(besides the 7 between me and God - I'm not worthyYes you are, dummy)

I have been haunted by that vision of a puzzle piece struggling to fit into it's spot my whole life.

It is part of what drives me to keep trying to figure out "who am I"
It has been the desperate hope that kept me clinging to living during my darkest hours
It is the voice in the back of my head that keeps telling me I have worth
It has been a measuring stick at every point in my life for whether I was being "true" to myself
It became a big joke when my son was diagnosed with autism

I have recently found a few autistic adult pages who have been vocal about NOT liking the puzzle piece as a symbol for their community/ identity/ condition.  The complaint seems to be that it engenders fear and confusion - that it automatically implies outcast and challenge - a puzzle to be solved rather than ...


A member to be embraced?
The part that completes the whole?
Like every other piece but still distinctly unique?

I have seen several explanations of why Autism Speaks does NOT "speak" for the autistic community.  I'd be inclined to believe it, if only because that is true of every national organization.  One does not effectively play politics (for money) and effectively stay genuine to the mission of the organization (the people you represent).  They are just NOT the same games.  Let me make it VERY clear that I have ABSOLUTELY NO desire to defend or accuse Autism Speaks.  I am convinced of my inability to change their national agenda as much as I am convinced I will not change global politics by affiliating myself with scouts, or a church, or a homeschool league, or whatever.  I change lives by reaching out to the people around me, by touching the lives of those I serve and worship and work with.  I am ALL about the truly American tradition of keeping politics local.  If I effectively serve my community, I will be called to serve where I am able.

Many of these same people who dislike Autism Speaks are calling for the "Awareness" to be changed to "Acceptance", or even "Action".  Some pages posted memes with all 3 words.  MUCH of the FB feed is about justifying participation in Lighting It Up Blue while still advocating expansion of "A" words.

So we are arguing about "A" words...


I have been teaching a training to Teen Couselors - high school aged kids who will be actually sleeping and living with their campers - about diversity: People Are People.  We started by playing a social status game with a deck of cards.  The game is called Pokerface (From Michelle Cummings/ Training Wheels/ Playing with a Full Deck), and the participants treat each other according to the value of a card.  The trickster is the Ace... Is it at the top of the heap? or the bottom?

Being ever clever ;), I used this to segway into Autism... sometimes it is perceived as being the pinnacle of human existence, and sometimes it is perceived as a nadir... gifted or learning disabled?  High-functioning or low-functioning?  Super sensitive or painfully awkward? Cure or accommodate?

The more I follow other families and individuals, the more I see that all of these are...
TRUE.  Certainly not for every one at all times, but for every person on this life journey with Autism, they have found all these true in some way.  Some kids really are "better" with treatment of the gut.  Adults really do need to self-advocate and live accommodations.  A kid can be "severely Aspergers".  There is some kind of super power in the differences (whether academic or spiritual or physical) that creates some pretty intense awkwardness.

Amazingly, just like an Ace, Autism exists at both ends of the spectrum of humanity simultaneously, concurrently even.

I find it compellingly odd that there seems to be a growing group/ community of adult autistic who are shrieking for acceptance & action, who keep expressing that they desperately wish to be understood, who appeal to "parents of autistic children" to remember that our babies will grow up too (which is why we need to include them "more"), and who seem to want to disown that parent community (a "we are the only ones who really know" attitude).  I am not trying to trivialize the differences - do not misunderstand!  Obviously their shrieking comes from lifetimes of being misunderstood and mistreated.  There clearly must exist legitimate reasons for their fury.  Emotions are never less real because they are experienced by someone else... But it just can't be that autistic adults have more valid voices than parents - any more than it is possible that parents have more valid voices than autistic adults.  Calling for "acceptance" and "action" can't turn into "reciprocal domination" - it has to mean reciprocated genuine respect.  All of this discussion on both sides is centered on inclusion of everyone, respecting and honoring differences, seeking contribution, not detractions...  

Parents who Light It Up Blue are trying to rip the fear associated with Autism to shreds, just like the adult self-advocates are.  Parents who Light It Up Blue are celebrating the humanity of their child, not inviting the rest of society to laugh at them!

I want you to think about Chik-fil-A for a moment - not the good food, or the same-sex marriage controversy, or the not being open Sundays... Do you "see" a COW when you think Chik-fil-A?

hmmm... using the symbol of the opposition to make people think of you... (I am not gonna get into the Aspie concern about dairy cattle vs beef cattle here)

What is so wrong with Autism Awareness?  Is it so different from Acceptance?  Doesn't being aware create a call to Action?  Why can't the puzzle piece be in the smack middle of the picture - the piece that brings the whole picture together?  Why can't we seek the details we don't understand yet and still value the information we have?  Why can't the underlying similarities be just as important as the obvious differences?  Or Why can't the underlying differences be as important as the obvious similarities?  The puzzle piece is automatically an inherent part of the picture, not just loose in the box...

I am just saying, "Can't we all be friends?"

But I am also saying - let it go - just be who you are - who God made you, with all your glorious differences and similarities - fight YOUR fight, 'cuz everybody else has their own assignment from God - Just be what you ARE, and it will fall into place.

What is more satisfying that nestling puzzle pieces together?

An incomplete puzzle just leaves so much emotional hollowness... 
Whether you are starting at the corners or matching the colors of the flowers in the field, it's gotta fit somewhere... 

Wait for it... with awareness, and acceptance.  Action will smack you in the head when it is ready for you.

Just so you know, here's the exchange that occurred in this house this morning:

Mom: "Would you please wear blue today? It is INTERNATIONAL autism day!"

Kiddo: Wraps self in blue blanket, "Mom, being different is sometimes good because God made us different and we have special talents, but being different is sometimes bad (he starts tearing up) because people leave you out, people get afraid of you"

"All people need to stretch, son. You go to therapy every week to stretch every week, right? You move a little more, or the sound gets a little louder, you grow a little bit. Every body else needs to stretch a little bit more into autism! That's why we are wearing blue - to remind people to stretch so we can all fit together!"

Meeting in the middle means both sides have to move... just sayin'