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

dragon pups

dragon pups

Wednesday, September 18, 2013

On suicide and regrets...

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

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

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

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

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

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

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

I just wish things were different...

But, they aren't.  

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

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

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

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

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

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

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

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

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

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

Monday, September 16, 2013

a weeked with my husband...

So the truth is that my husband and I do not really have "domestic" bliss... in fact we are both wretched house keepers. We actually come from long lines of hoarders (mine are even more honorable than his) and tasks tend to get left until someone looks at them and thinks "ACK! well I guess no one else is gonna do this"

Our relationship is built on shared experiences, not really shared space...

So when my 1st weekend OFF in 4 months arrived, we started discussing what to do with our day.  Naturally, there is LOTS to do around the house, and we just need to do it... but instead we decided to "adventurate" (this is the verb we have invented for our family "adventure therapy" excursions).

Let's just drive, sweetheart...
OK. I have not been to Western Maryland, like Cumberland. Let's go there.
OK, sounds good.  So should we take stuff? I mean the worst case scenario is that we drive so far we decide to stay...
No, the worst that can happen is that we die in a fiery car crash.
(!!! what? - this from the man who has berated me for YEARS for being overly negative)
Um, well, I wasn't gonna go that far, hon.  I was just thinking we should pack sleeping bags and clothes in case we decide to camp or something...
Oh, yeah, that's a good idea.

So we found a change of clothes, and our sleeping bags, even remembered dog food, and got in the truck to go...

First we got a car wash, then we stopped by the Chocolate Bar, but it wasn't open yet (10:30 am), so we went across the shopping center to the organic store and got chips made from hummus and pinto beans.  We went up to I-70, and headed West.  Then this sign said "take I-68 to Ohio and points west", so we took I-68.   I sang along to the radio at the top of my lungs.  My husband tried to find a map, eventually found one on his phone that said I-68 doesn't really go to Ohio.  We tried to decided if we had ever been on this road before, worked through some old memories, decided that we must have been here once, but we had no memory of it.  

And then we got hungry.  As approached Cumberland, MD, we saw a sign for "The Crabby Pig" - BBQ and crabs - we are IN!  So we got off the interstate - and proceeded to be totally lost.  It was apparently the wrong exit.  We found the hospital, and then we found "town", and we saw a walking mall type area, and we crossed lots of RR tracks, and finally my husband's GPS put us back on the freeway on a one way entrance, and then took us off at the next exit in this convoluted tangle of ramps. And the restaurant was at the end of the ramp - but parking was not.  For those of you who live in Autism households, you can imagine the level of anxiety and snappiness that is building in our vehicle...  My husband is on the edge of flipping out...  I found an empty gravel lot pretty quick and parked there (even though it was totally unmarked and under an overpass), and we went to eat.

Turns out the Q was AWESOME, and hubby enjoyed his fish.  Dog enjoyed our bones and shells. And every waitress in the place keeps stepping outside and staring at something beyond the building... Finally our waitress tells us there is a concert tonight on the waterfront.  Apparently the guy is good, has even worked with Martina McBride.  And the concert is free.  We decided that our joints would enjoy being out of the car, so we will see...

We walked a tad along the canal (C&O) walk, found the Western Maryland Railroad Station (a part of a national park there - that is also the start of the a biking/ hiking trail that goes from Cumberland to Harper's Ferry). There is TONS of cool stuff to do there, and we talked about bringing the kids back, or bringing the scout groups there.  We found some lollygag spots, and appreciated them.  After a bit, we finally negotiated to go to that walking mall we had seen.

With no directions except the signs on the road to guide us (and the zillion flyers he picked up at the national park), we walked downtown Cumberland.  Turns out the town is very interesting.  We found the walking area, and the buildings are incredible.  Clearly old RR money, lots of desperately intricate 19th century efforts of Conspicuous Consumption mixed with some early 20th century attempts at modernity.  They are trying to revive and use these spaces for thriving art community.  All the little empty spaces between building and on corners are "parklets", with fountains and benches and greenery.  So cute!  We found one of the top ten yarn shops in the nation! It was COOL.  I need to go back and take classes (already plotting how I can do that).  Found a woodworker who makes wooden mushrooms with secret compartments - each one one-of-a-kind and named.  When you purchase one, you get to choose a name for the next one.  We got Iris for our daughter, and named Leilani for someone else's treasure.  We finally decided to stay in town and try that concert, so we walked to a hotel that the brochure said would take dogs, and got their last room.  I've never had a dog on the 6th floor before.

We moved the truck to the hotel, and then played on our computers a little (free WiFi!), and then decided to go get food.  We found a "grill" on that walking mall, and their drink special: hurricanes!!  So we had a few.  This is the first outing in which neither of us have needed to drive since college.  The dinner was delicious.  Hurricanes make my husband happy, and we laughed a lot, just got giggly.  I was even able to accept his admonishment that I was getting loud gracefully (because I have finally accepted that I AM loud, and that not everyone is OK with it).  We finally got to the concert.  The guy was good, and they had chairs out, enough for everyone.  And after the first set (that we saw) my husband fell asleep on me.  SO we went back to the hotel, where I tried to initiate a conversation while he watched football - but apparently I started snoring between sentences.

The next morning we had no headaches (yeah!) and found Roy Rogers.  I absolutely love the Chorizo Burrito - it was Perfect! and then we drove around the city for 30 minutes trying to find the on ramp.  We finally found the interstate, and went 2 exits.  The waitress had also suggested that we check out Rocky Gap State Park (and casino).  The park is absolutely fabulous, again we plotted coming back with the kids or a scout group.  We walked thru the casino and ate on their veranda.

I was seriously considering renting a canoe or a paddle board.  My husband looked at me and said, "You are so beautiful here, around the water.  It is truly your element."  

After some soup, we decided to explore the rest of the lake.  We drove every road we could find, followed signs to lookouts and pavilions and amphitheaters.  We finally found the camp ground, and it has an aviary!  we left no nook undiscovered!  We looked inside the yurt and the cabins, drove by every campsite (all 200), checked out the beach, found a fresh water oyster shell, saw skunk and bird tracks, watched minnows, saw a water bird hunting the shoreline, watched the dog drink from the clear lake, heard the wedding across the lake, checked out the nature center (got lots of good ideas!), met other dogs...

And then we decided to turn the other way in the road out, not towards the interstate.  Within 2 minutes we were in PA.  Hmmm... so we kept driving, knowing that eventually we'd hit something... but it seemed it might be a long time... and then a man on a bicycle was approaching, so we slowed down and ... spoke to a stranger (I'm sure you are aghast... I talk to strangers all the time, but Lord forbid my Aspie husband ask for directions!)  After all, the guy was in Sunday Khakis and a button down shirt (oohhhhh, dangerous)... 

Sir, we are lost.  Could you tell us where this road goes?
Well it eventually hits E______.  Where are you headed?
We live in Virginia, but we are up for some adventure...
Well, down in the middle of the cove you will see a white church.  If you turn right there it will take you Flintstone and the interstate.
Thank you so much, have a great day!

My husband then checked his GPS to be sure the complete stranger did not mislead us... we joked about roving bands of mountain men, and his ridiculous lack of faith in good country people... and we found the interstate.  And even adventured on the Historic National Road, until it merged with the interstate.

We stopped at Sideling Hill to see a geological wonder (old rocks when they dynomighted out the interstate)  It looks like the hill is glowering on the freeway.

We then went to West Virginia and checked out Capapon State Park.

We drove every inch of road in that park (well, except for the section to the golf club house), and checked out the cabins and shelters, and playgrounds, and... well, everything.  It was started by the CCC (Civilian Conservation Corps) in he late 30's, but WWII started before it was finished.  So we found a road that went to the summit of the park - 4 states are visible on clear days.  It a rather rough gravel road, so kinda slow going.  So slow that a squirrel tried to stop us.  He just sat in the middle of the road, staring us down... the truck passed right over him and he darted out between the tires!   Goob!

We then came home and washed some dishes, started some laundry, and did made a token effort towards domestic bliss...

We really are excellent procrastinators!

Wednesday, September 11, 2013

On Free Will and Predestination

I have been deeply struggling lately with these two ideas.  I have worked to create a "new me" this summer - to really see myself in a new light and to move in new directions... to invest in the person that I was "made to be"...

I struggled with how selfish that sounded, and how it affected my family and co workers, but then I saw that when I gained confidence, I was able to engender even more confidence (and genuine affection) in those around me.  And I started REALLY looking at why I do what I do...

I discovered that happiness IS a choice - that I can try to convince myself there are silver linings, or I can start actively listing them.  I can seek the company of those who make me stronger.  I can trust what my gut says.  I can find ways to respect and love people, or I can choose to hold onto anger...  It really IS my attitude (and the availability of chocolate) that determines whether or not I spend my day feeling good or not.  I can choose to believe that the compliments are genuine, or I can choose to believe they are just niceties.  This summer I learned to finally believe them... I can choose to forgive myself, or I can hold onto the pride that drives me into self-dis-respecting behaviors.

I also discovered that every person I interacted with helped me on this journey.  They offered insight or observation on one aspect or another (or a couple) of my inner conversations, even when I did not initiate discussion of those conversations.  There were so many times this summer when someone said exactly what I needed to hear, or exactly what I was thinking, or provided me a new window to thoughts and conversations I had in different places.  It became clearer and clearer as the summer passed that I am surrounded by those who gently pushed, and lovingly supported and drastically challenged, and deeply loved... me,... even when I didn't know they were doing it, or invite it.

So how much IS Free Will?  And how much IS Predestination? 

A conversation amongst my staff (who are *somewhat* - ahem - younger than myself) really showed me...

Vastly Mature Lifeguard 1 (19 years old) is dispensing wisdom to Still Growing Lifeguard 2 (16 years old), while Awesomely Sure-of-Himself Lifeguard 3 (19 years old) is listening.  My husband and I are hanging out nearby:

LG1: (in resonse to something LG 2 said) But you always have a choice!
LG2: But I didn't!  It is what my family expected me to do.
Me: Hon, there are many things you don't get choices on...
LG1: That's not true.  You ALWAYS have a choice!
Husband: (chuckle) Ahhh, to be young....
Me: There are many things I did NOT choose.  I never chose autism.  I do not choose the challenges it brings us...
LG3: Then they were chosen for you.
LG1: But you always have a choice.  You could have chosen not to deal with it.  I didn't say they were all good options, but you have a choice.

And therein lies my conundrum...  What is "chosen for me" and what do "I choose"?  Can I have both at the same time?

I have always been convinced that God puts you where He needs you to be, when He needs you to be there.  I am a great "connector", seeking (and finding) the threads that weave all the stories together, seeking the perspective that moves pointillism into masterpiece...  I can "see" clearly how the road I have walked, with every twist and turn, has lead directly to where I am at - and how each experience provided me with a skill or knowledge that is immediately relative to my life functions.  All the players and all the settings are relevant, and it so clear, that now that I am seeking the relevance in any new players/ settings...  It is painfully, disgustingly, glaringly obvious that I am shaped by my experience to meet a future goal...

Yet, I also can see how I have clung to some pictures of myself that enabled a victim mentality.  I have made excuses for not trying, or for trying only so hard, or for trying too hard, or for trying in the wrong directions.  I can see where I chose to be unhappy, or wallow in what was most frustrating, or let fear rule my decisions.  I know that I have the ability to control my response - as well as my perceptions.  And not just know with my head (saber in Spanish), but know with my heart (conocer in Spanish) - I conozco that what I choose to see is what will show up.  I have had so many lessons on that!  From miscommunications with family and friends, to setting student expectations, to defining sexiness and self-image...  I get to CHOOSE what I see and how I see it.

So how much of my reality is made BY me, and how much is made FOR me?

And why is this question driving me nuts!?   I have to deal with it either way - so does it make a difference?  Do I get to control my life?  Does faith matter if I get to make all the choices? 

Or is it about balance - like everything else... I do not get to lay the road, but I get to choose how I climb the fences?


Never forget...

I was standing in front of a classroom on the top floor (3rd) of a Catholic school 3 block from our nation's capitol - we could see the dome through our hall windows.  It was an 8th grade history class, and about 17 kids were listening to me tell stories about the American revolution era.  Then the intercom asked for a student...  shortly another...  Within about 5 minutes, 5 or 6 students were called out of the classroom.  I had no idea why...  We were on an altered schedule that day anyhow because there were guest speakers...

The guest speakers came in  my room, and a coworker took me into the hallway.  I asked what was happening, and he told me about the attack on the towers...

From there the time table is iffy in my head, but the thoughts were not.

I know I teared up immediately, I think my coworker held me.  I knew this was a systematic attack on all the cities across the US, and the day would only get worse.  I knew that my brother, a navy pilot, would be activated immediately and have to deal not only with that day but with the military action sure to follow.  I grieved for him and his wife.  I knew that the terror attacks would lead to anarchy - and that my father, a policeman in L.A. - had already guarded lives through the Watts riots and the Rodney King riots - and he would do every thing he could to protect people through what ever anarchy ensued.  My head tried to think what the most likely targets would be - Hollywood?  Disneyland?  Would they opt for maximum loss of lives or what was most culturally iconic?  My parents lived less than 3 miles from Disneyland, and my mother is a teacher too.  What would the day be like for them, waiting for the attack all day?

And my husband!.... he worked in DC, in the Northwest big business area - on the opposite side of the city from my school.  The Pentagon had already been attacked when I was informed of what was going onClearly the capitol was next.  We lived on the Virginia side of the city, surely he had gotten out... He was in a place where he could walk if he had to, but surely they were evacuating the city...

And I gave myself up for dead.  Surely they were smart enough to aim for the capitol.  While there woudln't be the same drastic collapse, there would still be massive destruction. I would need to protect my students, but schools are magnets incommunities for field hospitals.  We were literally across from a park, so the community would come to us. And we would need to go to them too. 

But I still had a classroom of students waiting for me, and while I was told by my coworker that the school leadership had decided not to tell them what had happened, the schedule for the day was clearly suspended, the parents were trying to get their kids out, but not all the parents would be able to show up...  I was the one deemed capable of staying with them...

There were only 4 teachers on our team, one had a husband at the Pentagon, she needed to leave, one was the man who came to tell me the news, he needed to go tell other teachers, and the other was the old teacher I shared a classroom with - her calm presence was needed at the front door of the school with frantic parents.  Naturally, I returned to the kids.

When I walked in, the kids knew something was wrong - after all even more students had been pulled out.  I couldn't tell them, but I couldn't lie to them either.  So I told them the truth.  I told them something very awful had happened, and that I could not share details. I told them we, at the school, would do everything in our power to keep them safe.  I told them all we could do was wait.

I know that I was given 2 classes at some point (7th & 8th) - there weren't many of them at that point.  Parents were picking them up as fast as they were able - but there were some that we knew had parents that worked out of the city, who may not be able to come get their kids...

I know that I was relieved at some point to make my own phone calls/ check with family.  I called my husband's office - no answer.  I left a message that I was hopeful he was safe in our apartment and I'd be home when I could.  I got a hold of my mom - told her I was OK, but that I knew the capitol was next, and that I was committed to staying with my students - I couldn't get out of the city anyhow - since I would have had to go by the Pentagon.  I told her to tell everyone I loved them, and I'd call when I could to update.

I know other teachers must have checked in on me.  I know students kept going home.  At some point the decision was made that we had so few students left in the building that we would put all of them in the library.

And I told my students that they had to be brave, that even though they knew something awful had happened, the littles would just be frightened, and it was our job to be sure they felt as safe as we could make them.  I told them that it would be hard, but they needed to let those littles know they are loved.  We'd have to play with them even though we didn't want to play.  Most importantly, we just needed to be strong for them.

And they did it.  They gathered their gumption, went into that room with the littles, and took care of them.  It gave all of us who were left in the classrooms some respite.  The other teachers were surprised at them - but I knew had prepared them as best I was able, and I knew my kids were made of stern stuff.  I finally was able to get a break and go actually see the news...

It was nearly 3 pm before I saw the towers collapse, and the Pentagon destroyed.  We knew the 4th plane (the one that should have taken out the capitol) was downed in PA.  That was when I finally realized that we were probably not going to have to protect these students through the physical collapse of their community.

And then my husband showed up.

I was SO angry, and SO relieved.  I was reprimanded by another teacher for hugging him too enthusiastically in front of the students.  Of course we weren't sure if these students would ever see their families again...

I told my husband I had to stay.  All the teachers who had children had left.  We didn't have children...

There were also those who were very local to the school who stayed - mostly with adult children.  Any destruction of the school would have been of their homes as well, so they chose to stay.  They finally convinced me that I did not have to stay.  I did not want my older kids to feel abandoned, but we were down to just 2 of them by that point, and the the school knew the parents, teachers were committed to taking them home if they had to.

So around 5 pm, my husband & I decided that we would not be able to get out of the city to the west (towards the Pentagon), so we headed east and found our way to his parent's house in Maryland.  We spent 2 days there while things settled down.

Eventually, school started again.  My administration did a good job of being reflective, instating new policies about safety.  How could we have kept attendance better?  How could we have gotten students to parents better?  What could we do to protect our students (building) from a bomb attack?  What could we do to protect from a bio-hazard attack?  The reality, is not much, but the effort was made...

I will never forget the strength of my students.  Those very young people who were asked to be so very strong in the face of such a huge unknown.  I don't remember talking to them about it.  I do not remember getting feedback about my courses of actions.

I remember survivor's guilt.  Clearly, if I had been through so much, had such a close call - I lived for a reason.  I vowed to teach American History with renewed vigor, committing myself to America's greatness - to our diversity, the Spirit of the Law, our volunteerism.  I vowed to live every day celebrating my freedoms.  I would see dark days in the years ahead, but I knew at that point, finally, that I was a Teacher - meant to love children and show them my passion for history and people.

For 2 years I wore a black ribbon every day.

Eventually, life goes on.  The rhetoric of 9/11 was all about not wallowing in the horror or misery - because that would be a win for the terrorists.  I continued to teach, and to love my students, and learned the life lessons God had laid for me...

I LIVE every day to the fullest extent I can.  And I commit myself to a life of public service through teaching, and Scouting, and giving rides to AT hikers, and helping my children share the gifts God gave them...  And sharing the gifts God gave me...