Kids with Autism ARE hard

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

I cal Bull$h!t.

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

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

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

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

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

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

THAT is a low blow, my son.

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

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

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

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

THAT is low, low blow.

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

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

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

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

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

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

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

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

flailing around...

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

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

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

how do i avoid that?

i can teach everyone but me, i guess.

so, what is the inventory of strengths?

feeling in a funk

These are the kinds of times I do NOT want to write out, to remember - but I think it is important that I be able to look at this place a year from now and see the change...

I am feeling like I am in a transition.  I am in a pretty deep funk, keep looking into who I am and what I am doing - keep trying to lay fingers on a good reason to feel as "off" as I do... and there aren't any, really.  There are lots and lots of little things, things I should be OK with, thinngs I have overcome before, but I just seem stuck on them now.

There is the potential for transition coming, though I know it will be incremental - not a big deal in the short term.  I am internalizing all kinds of pressure about it (have been for 3 months) - but it has to do with a much larger political situation at work, with many many fingers in the pie, and lots of hoops, and details beyond the scope of my ability to control.  I know that all the players are good people, that everyone has everyone else's best interests at heart, and that we are all committed to the growth of our organization.  Truthfully, there is nothing to do but wait while everything gets sorted out.  Realistically, no one will get exactly what they are wishing for out of this - not only will we all have to compromise, but there simply are not enough resources available to do it all.  The people who are making decisions are deeply knowledgeable and insightful.  It really will all be better than OK.  Perhaps I am being impatient...

So the problem must be me?  Several coworkers & friends have identified "chips on my shoulders", resentment, and my flaws lately.  Am I just not working on me hard enough right now?  Is it the shortening days - depression setting in, lowering my frustration threshold?  Should I be working harder on self-improvement?  I feel like I have invested a LOT of effort in me this year.  I am losing weight, I am exploring my goals, I am making time for myself to play, I have actively worked to build my confidence and lose a victim mentality.  I am really trying to not just stand in a place where I can look at my history and know it shaped me, but look ahead and aim for where it will take me - to not just "let" life happen, but to "make" life happen.  And I have tried to do so as healthily as possible - by focusing my passionate nature on every minute I am in, living fully.  I feel like I had been doing a pretty good job all summer, but in the past month doubt resurfaces more often.

I keep returning to a place where I am an embarrassment to others.  And there are a few small events that have brought that out this month, but no appalling moments of social ineptitude like my past has seen.  I have not hurt anyone's feelings or broken an unspoken rule - yet every day I am haunted that there is some thing I have done that I do not even know about that is bringing people to judge me in an unfavorable way.  I have not been this undermined with doubt for a while...

My friends have continued to reach out to me, to help me feel loved.  They have bragged on me to others, asked me to train and lead.  My husband has been kind and loving.  My children have written me letters while they are away.  I am connecting with students meaningfully on the challenge course.  I am doing what I am supposed to, seeking loving presences, and fulfilling my responsibilities.  And I do truly see and appreciate how much love is sent my way, in a genuine way I know I did not feel when I was younger...

The only thing I feel I need to do better on in the moment is housekeeping - nesting.  I am doing lots of art nesting (which I normally do in the fall) - but my fear of spiders is just totally impeding me from cleaning - as well as the knowledge that in 1 week my children will return and it will all be for naught.  I have been living with myself as a bad housekeeper for years - why is is bothering me now?

I am thinking I just need to chalk it up to the winter depression - the lack of light.  All I really want to do is go back to sleep, sleep as long as possible, and wake up when it is time to play outside again...

I am trying desperately to hide from my own head.  I want to turn my thinking off for a while...

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.

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?

Oh Christmas Tree...

So we do not put up a Christmas tree... and the stories to support that decision are... lengthy.

Oh, I tried!  When we were first married, I SOOOO wanted a tree, to feel like I was in my OWN house.  And I told my husband "we are NOT going to alternate years between parents! - we are building our OWN traditions!"  I was VERY afraid of being forced into the "every-other-year" thing after kids came - other holidays we travel, but NOT Christmas... kinda.

In reality, it's when we could get off work - so we didn't really have trees because we would be with one set of parents before the holiday and the other immediately afterwards - home for only 24 hours... traveling from one coast (California) to the other (Maryland)... it just wasn't practical or safe to have a tree (I grew up in CA - the fire dangers of a dry tree are WELL known to me!).

Then, kids came.  I was gonna do this thing AT HOME, no compromise.  One year I got a tree too big to get in the house - had to saw off most of the top.  One year, I never got it IN the house, just TO the house - put it in the dog's water bowl to keep wet - and it FROZE in there - had a BIG block of ice at the base I couldn't get in the tree stand, so we just embedded it in a snow bank outside.  The kids & I used spatulas to cover it in peanut butter and threw bird seed on it for the birds.  We cannot find our decorations anyhow.  They are HERE, somewhere, but too well stored to be accessible... and it is just TOO much work to rearrange all my crap for just one month anyhow.

And winter is a HARD time for us.  I personally have STRUGGLED with the seasonal affective disorder, BIG TIME - I grew up in Southern California!!!! we don't have this many dreary days back-to-back!  I struggle.  It was REALLY apparent in my son though...  the winter he turned 3, he lost the ability to speak... we went for 3 months with SEVERE stuttering and major head banging.  It was SCARY.  The next winter he developed weeping lesions on his face (has a scar) for months.  The next winter, we just took him out of school for the month of December - road tripped to Las Vegas - and he was AWESOME, but the that spring saw the HSP (auto-immune rash)...  The next winter was last year - the year we took him out to homeschool... the winter we found out how bad the bullying was, how he had been restrained without our knowledge, that he was having nightmares from his school experience... it was a time of difficult healing for us.  This winter has brought a much lowered frustration threshold - when the OT told us last month to "get that kid medicated" because he is reacting in such a way we cannot see any triggers, and he is getting violent...

I have always argued that the Holidays are VERY difficult for him. We go from SCARY Halloween black & orange, to Thanksgiving travelling (it is his grandfather's birthday) and immediately into new music on the radio and Red & green in ALL the stores.  The TV shows change, the radio changes, the stores look different, the classroom schedules are TOTALLY disrupted (not as big a problem for us now)... I can understand where he'd be NOT OK.  And the more I reached out to the Autism community, the more I saw that this was pretty common behavior.  

I do also think that with my son's "extra sensitivity" that the general emotional agitation of the season is a problem for him too.  Everyone you meet and interact with is emotionally charged, one way or the other, over upholding or creating traditions, or helping others be happy, or religious zeal... I can only IMAGINE how overwhelmed he must feel from all quarters, ALL the time!!!!  That was part of why we took off and road tripped - it would only be us, trapped in a car, driving across an empty dessert...

So I decided to strive to keep things "normal"/ "ordinary" at home, to just let this be the place it is - the place where we all just let it go and be our odd selves, where we find ways to live together as we grow.

BUT - my daughter's birthday is Christmas day...
So we really CAN'T ignore it!!!

So I hit upon this idea last year.  It sorta worked, so I am gonna try it again this year.  I find it takes a while for things to kinds gel into a workable tradition...

The year I froze the tree to the dog's bowl, I just cut a tree out of wrapping paper, and we tapped it up to the wall, and stickered the holy bejeezus out of it - so we could have a place for presents.  The whole big paper (and stickers) kept falling down - there is just not enough tape in the universe, people...

So last year we decided to put our tree up a little at a time... with paper hands.  We cut out a few hands (ours) every day, and taped them up in a BIG triangle, and prayed for each hand... either for someone whose name we wrote on it, or for something we needed help with (as I said, it was a healing time for us)...and when others gave us hands, we prayed for them too.  There were whales and dogs prayed for, and aunts and uncles, and sleep and safety...

Our "tree" never got big, but it was enough.  As a matter of fact, I have not taken it down.  Partly because I just didn't "get to it", but partly because, I really do NOT want to lose the memories and prayers we offered, the healing that we found, the kind of ritual and ceremony we built for ourselves that reminds us of the "reason for the season" and all the people that love us, through think and thin - the community that supported us when we were in a dark time...

We will ask our family and friends for hand prints again this year.  And we will make more ourselves, and we will offer prayers of thanksgiving and petition.  And I bet I will be too "lazy" to take it down again... That's gonna be a BITCH to scrap book in about 10 years (or less)...

On Dis-Ability

This is both deeply personal and highly philosophical....

And it may ramble because pain meds are good...

SO I went to the Orthopedic doc today.  While this may seem innocuous, it is in fact VERY, VERY traumatic for me personally.  I will give you a brief medical history to explain – here’s what the doc got:

I have experienced patellae [kneecap] dislocations since infancy. At age 7 I had PT [physical therapy] on both legs.  Dislocation continued at a frequency of about every other month (where the knee cap would return to it’s appropriate location without assistance), and a significant dislocation every year or so (knee cap would be dislocated for several seconds, most times I was able to relocate it by adjusting leg position).  At 18 yo I had a severe dislocation, required ER, demoral [sp?], and medical assistance to relocate.  In 1995 I had bilateral patellae realignment surgeries on both knees.  Meaning it was an 2.5 hr open surgery for each knee, the doc told me he “lengthened” the tendon on the exterior of the knee, “tightened” the tendon on the interior of the knee, and used arthroscopic to “clean-up” arthritic damage under the knee cap.  In 2000[ish] I developed intense joint pain in my whole body. Orthopedic evaluation at that time told me I would need both joints replaced, but was not old enough.  In fall 2011 developed significant swelling of the left knee, had 6 weeks of PT that focused on my IT band.  In August of 2012 I developed a “catch” after repetitive motion in a squat (teaching swimming) there is a “glitch” that prevents the knee from straightening, is relieved by pulling foot vertically to butt MOST times.  In lower exterior of knee a spot gets visibly large, is SENSITIVE to touch, but “glops” back “into place” when gentle pressure is applied.  An upper interior spot “twinges” with walking occasionally and leg loses ability to support weight.

So… that IS the short version.  What this doesn't include is: that my very first memories are of the pain of dislocation, playing in a restaurant parking lot; the nights the weight of the blankets would trigger a dislocation; the tag games I didn't and don’t play; the fear to go to middle school PE because it dislocated kicking a soccer ball in the first month of school; the ice and anti-inflammatories and watching others play and choosing not to participate when asked; Looking into a man’s eyes begging him to call 911 to help me after just 3 weeks at college; The year between the Big Dislocation and the surgeries spent wearing ONLY skirts to hide HUGE metal braces, staying alone in my apartment so as to avoid ice; the 12 weeks spent in one summer TOTALLY unable to get my body into the bathroom without assistance from others; the 3 years of PT after double knee surgery to walk again; walking down the stairs backwards at my college graduation, still unable to be “normal”; the nightmares that have plagued me of the pain or nightmares of people making it dislocate to punish me; the sensation of a crow bar trying to pry open my knee when ever a storm front moves through; the attention and care I give to every step, every day to be sure I am not twisting or unstable; scaring a group of Brownie Girl Scouts because they could hear my knees as I crossed the room; the inability to run to catch up with my kids– and the FEAR…

There have been times I am SO frustrated by my “lot”! BY GOD! I look normal – there is NO PROBLEM – umm... until there IS – and then it is MAJOR.  I was an athlete – a swimmer – in high school, because it was the ONLY sport “safe” for me to participate in.  I absolutely LOVE to dance – but I MUST be right next to a wall to support my body, and concentrate on not twisting.  Gained a bunch of weight after the surgeries – have NEVER been able to loose it – it hurts too much…  one leg swells, so I use the other harder, and then it swells, and then I have to sit out for a few weeks, and then I’m even stiffer when I try to exercise again.  MANY people have said they do not believe me that I have this problem, or that I am exaggerating, or that I am not doing enough to treat it. It’s like an invisible issue, until it requires IMMEDIATE assistance… - but even then – if the dislocation was fast, they didn't see it, they didn't feel it, so did it happen like I said?

And the FEAR!!!!

The Big Dislocation was awful.  I was 18 yo, end of my freshman year of college, was home [CA] walking 4 children ages 11 – 5 yo to the local park with my 200 lb dog. I was sort of babysitting them while our folks visited.  I tripped stepping up the curb, dodging the leash… and fell.  My knee cap was on the back of my leg.  I tried to push it back, no go – I tried to bang it back, no go – I hit a wall.  The oldest kid offered to run to my house to get my mom [she did NOT live in our neighborhood - but she went].   A man showed up out of no where, asked if I needed help, I told him yes, he asked if he should move me.  I THEN remembered my first aid training and assessed the scene… I was by a 4 lane major thoroughfare in Southern CA with 3 children under 10 and one 200 lb dog, my head over the gutter, unable to stand or move, the cars were passing frequently… the kids & dog just watched me.  I suddenly realized I could NOT protect them from this stranger, & I WAS RESPONSIBLE FOR THEM!.. but also that if I got excited, panic would ensue… so I asked him NOT to move me, but asked the kids to stand away from the road, saw the dog sit.  Then a lady (another stranger) showed up.  One of the 2 adults told me they had seen me fall and not get up, so stopped to help.  I told them I needed 911 help.  This is prior to cell phones, so they went door to door in a residential neighborhood looking for anyone home in the middle of the day to call 911.  Then I remember my dad showing up – he took the kids & dog – whew! – but the leg was still dislocated, unmovable.  He had a fleeting moment of shock/ worry on his face – so short I wasn't sure until later – but he is a cop, he’s peels dead bodies off streets, he schooled himself, and asked me if I could fix it.  I could not – I felt horrible for disappointing him. Then ambulance arrived. The ONLY time I screamed is when they lifted me to put me on the gurney.  I spent what I later learned to be about 1 hour in stop-and-go traffic on an LA freeway to get to the hospital holding my leg on a splint, could NOT put any weight/ pressure on it.  They shot me up with demoral [sp?] – and I then waited.  I heard the woman in the room next to mine throwing dishes, fighting with nurse – recognized it as a diabetic emergency, and waited.  They finally came in a team, and I only cried when the joint went back in place.  I went home.

The days that followed were ALL about fear.  I learned how afraid my dad was, how when he first saw it, his experience with car wrecks told him I would need immediate surgery to correct.  How my mom was SO scared waiting to get to the hospital, waiting with me in the waiting room, to see me SO souped up on demoral [sp?] – and it is GOOD SHIT, BTW.  How terrified the 11 yo was thinking that it all depended on her, and she wasn't sure where I lived, and she got lost once, and felt INCREDIBLY guilty about it, about how the littles were TERRIFIED that my leg would always look like what it looked like when I left them, about how the scream to get on the gurney was giving the littlest nightmares that I would never be OK again.  I HAD to go visit them to reassure them, see their fear, meet it. They told me I needed surgery, but I left for college in 2 days – to VA.  It would mean missing a semester of the college I had worked so hard for - the fear of losing my education.  And while the pain was bad, what SCARED me was that I was responsible for those kids, and could NOT have done anything to protect them.  What if the dog had run into traffic? He’d have been hit for sure – what if one of the kids went to get him?! I would have watched a child die.  What if the strangers were NOT good people, I could NOT have protected them.  It was HORRIFIC to look in the eyes of a 5 year old, have them ask if I could stand up and walk home, and I could NOT.  I carry SO much guilt for scaring them!  And they were not the first or last that have carried that terror with me, for me…  What if it were MY child looking at me, at mommy, and I had to tell them I was broken, they had to go get help… and I waited – had the surgery the following April, so had months to grow and feed that fear.

And THINK.

The next years were even harder… you had the surgery! The problem is addressed! WHY DO I STILL HURT? WHY IS THIS SO HARD?! PT SUCKS BIG FAT WADS OF HORRIBLE ICKYNESS!!!!  A LOT!  My dad talked to me about the courage to see PT through.  You cry ‘cuz it hurts, you cry ‘cuz your frustrated with your body, you cry ‘cuz you can’t be the “you” you were, you cry ‘cuz you don’t see an end, you cry just ‘cuz… fear turns to anger: you push your body too hard too fast, and cry some more.  You feel left out and sorry for yourself, and cry some more.  You get angry that everything takes SO much more time & effort, and you cry some more.  You get angry at how much of a burden you are to those around you [room mate, family, store clerk, EVERYONE], and cry some more, you get embarrassed at how obvious your need is to everyone under the sun even if all you are trying to do is walk across the yard, or buy groceries, and you cry some more.

It was in this time that I decided that EVERY BODY has a disability of some kind or another.  

Some are OBVIOUS, some not, some show up occasionally, some all the time, some in their bodies, others in their minds, others in their emotions... we ALL have scars that HURT a lot and have needed or will need LONG times to heal – scars that are solid enough not to tear when hit again, but still make every step painful, that we are still ginger about when we go through our daily lives, that are integral to who and how and why we are…  That make us cry when times are dark, and we work hard to live with E-V-E-R-Y S-I-N-G-L-E D-A-Y.

I came to terms with the fact that I might get some better, but not “all the way” better.  Once lost, it is NOT regained, so I needed to focus in new directions, look for lessons and positives.  I sought out those things that made me stronger, not weaker, I looked HARD at who I wanted to be, and HOW I wanted to be, and I tried to go there.

I was TERRIFIED when a new doc told me I would knees replaced 5 years later! WHAT?!  I just didn't know it was that bad… I cried again.  I told my husband and my self to be ready for the day that I would lose the ability to walk. I was 25 years old, told that I would just “have to suffer” until technology caught up with my needs and replacements lasted longer than 10 years.  The original surgeon confirmed the diagnosis, explained how all that hard work had been a “stop-gap” measure to buy me time.  I cried some more, and looked for new lessons again.

I got married, got a job, started a family, VERY carefully, on MY terms, and we have been “successful” despite my “disability”.

Then we got into the Autism diagnosis, and I became an experiential educator, teaching swim lessons, hiking hills; I got certified to teach High Ropes, life guarding and canoeing… after age 35.  Every fall when the cold brings back pain, I am afraid AGAIN that I will NOT be able to work next spring…

But the rule of joints is “use it or lose” – move through the pain or you won’t move at all.  The rule of pain management is “moderation” – be sure you don’t build up a tolerance so you have to increase dosage or strength.  So I continue.

One thing that STRUCK me when we got into dealing with Autism, and treatments and schools and advocacy is the “Person First Language”.  It echoed what I had decided earlier – that the person is a PERSON with strengths (abilities) and weaknesses (disabilities).  The phrase I CANNOT forget was:

“Disabled is the only minority that anyone can join at anytime in their lives.”

Accidents, birth defects, time itself, all of this put together… we are all VERY likely to be a part of this “minority” at some point in our lives, even if  [HOPEFULLY] temporary.

So what IS disabled?

I am not shortsighted enough to believe that we can ALL be “disabled” in a political sense – in the ADA compliance sense – that ALL Walmart's need enough wheelchair-carts for EVERY person who could possibly come in and need one at the same time – in the sense that NO building should EVER have stairs – getting through daily life is gonna be “rough” and difficult for everybody… so if that’s the case, shouldn't we assume it’s SUPPOSED to be that way?  And part of the whole “get the waiver” thing we have issues with is the financial part – the government just cannot support the growing number of people that need it.  If our son IS “high-functioning” and we are able to homeschool him by milking our parents and friendships and offer insight from our OWN experience, shouldn't we?  Others need that assistance more than us, right?

But does that make his Autism “less”?  Is my lifetime fight with my knees “less” than diabetes or depression?  ISN'T “disabled” actually “Differently Abled”?  CAN’T this be an extreme expression of the variability of humanity?  SHOULDN'T we be trying to embrace the diversity, learn the lesson?  WHY CAN’T we just believe that we ARE supposed to be different from one another? 

How "differently abled" does a person have to be before they are "disabled?

There are certainly times when I am UNable... when the weather pain is so distracting I can't function, when the choice to participate create the opportunity for others to suffer too, when doing stairs and carrying heavy loads will mean I cannot last the day, when I've taken all the meds I can and my body still hesitates to get up. I carry a crutch and a cane in the car, use a walking stick on ALL hikes, go VERY slowly (holding up others).. and those times I AM disabled.

But other times, I am VERY able.  Academic work? I am SOOOOO there!  Public presentations?  NO PROBLEM.  I have compensation skills: I can't catch up with kids or puppies, so I am LOUD; they ALWAYS come back [eventually].  I have learned to turn parts of my body "on" and "off" (like sitting still for the shots, or not tightening the inside thigh so it pulls on the dislocation).  Many days my body is NOT my friend, but I work hard to be self-aware - to share wisdom since I can't share physical activity.

I always end up coming back to the Bible verse that says we are all parts of the Body of Christ.  THAT makes sense to me, since every cell in a body is specialized.  A Team needs everyone to play a different role to be sure every job gets done.  A Family composed of all the different personalities and contributions of every member.  A System needs more than one component as well as multiples of a component.  A Spectrum requires the ends as well as the middle – removing the ends only makes new ones.  In the words of Kenny Rogers, “Every hand is a winner, and every hand is a loser” – there are multiple sides to every story.

We just can’t all be in the same place at the same time…

So WHAT is disabled?

UPDATE: That appointment? I got cortisone shots in both knees because the cartilage is gone - I am bone-on-bone under knee caps in both legs.  We will continue to "buy a little time" - IF cortisone and arthritis treatments work for me.  He reiterated that I WILL need both knees replaced, sooner than later (within 5 years or so), but that I am lucky that my structure is not severe enough to require breaking the tibia (shin bone) to heal crooked so that the joint is straight.  So how "disabled" am I? or will I be?

Sufferring

So today, I killed 2 mice.

They were stuck in a sticky trap laid out by our exterminator, over 1 year ago. As in the trap was a year old, the mice were still alive.  One was very small, the other bigger and very vocal.

A baby & parent?

The baby was laying in the glue, whole belly, NOT getting out, and was clearly exhausted.  The adult had pulled off it's tail and one leg in an effort to get off the glue.  It even lunged off the tray when I picked it up to put it in a bucket.

I know this is the "order" of the universe, and removing those mice from my home protects MY children from disease, but it was very, very difficult to watch the suffering and feel the fear emanating off them.  I needed to help end their suffering.

I called my dad for ideas, and we talked through options.  The best way to end their lives quickly without creating more opportunities for hurt (like me being bit, or my dog getting into poison) was to step on them.  My dad talked me through it, and I did.

I prayed for their pain to end, for the sacrifice of those tiny lives to reach God and be honored.  I feel REALLY REALLY bad right now, VERY dirty - like Lady MacBeth.

The problem is that I am just SO in a belief of connection, that every act is related to another. My mind seeks symbolism in every thing I see.  I am convinced that EVERYTHING happens for a reason, and that this occurred just today because I needed to think about it.

A parent sacrificing itself for a child who just made a bad choice.

Unfortunately that sounds AMAZINGLY like what we have been dealing with the last few weeks.  My son did not deal well with a transition last week. He was with a babysitter, in a public library, and he made an untimely outburst that was VERY hateful and exaggerated   The very timing of it indicates that he knew it would be impactful.  The babysitter has been falsely accused before of child abuse, and the whole incident, in such a public venue renewed her fears.

My first thought was, "Welcome to autism - trapped in your own home, fearing misunderstanding and unsolicited 'help' at every turn" - for YEARS my husband and I have talked about such incidents.  My son made threats to teachers and classmates at school, it was a BIG part of the reason we took him out and decided to homeschool, for fear that his violent outbursts and inaccurate descriptions of how he hated being at home and hated us would lead to... investigations, or actions.  We have been told that these are typical of Autism, that the lashing out with violent words or actions is the "behavior that is communication for those who cannot communicate".  I understand EXACTLY how that works - but my son CAN communicate - he has MANY MANY words - talks incessantly actually.  And while I can definitely say that he lives in an alternate universe in his head, he DOES see how his actions impact others and has shown active manipulation of others.  

FEAR underlies all our outings with him, just like it does for so many families on the spectrum...

Then I realized how concerned she was, and how real that fear is.. that people DO get accused falsely, incorrectly, and that maybe it IS only a matter of time before someone tries to take my child because they misunderstand his reality, or he misunderstands ours...

How do I arm him?  How do I protect him when he will not protect himself, or cannot protect himself?  What should I be sacrificing to save him?  I have sacrificed time and money and career, and his sister's schedule, and our friends....  Will I truly die, making a small fatal mistake trying to save a child who cannot be saved?  Which of the myriad of mistakes is that last mistake, the one too far, the one that will not let me come back to protect my other children?

God, please honor the sacrifice of those small souls, of those whose suffering I caused directly and those whose suffering I caused indirectly.  Please forgive me for causing suffering.   Please help us in our family's journey, to help us avoid the pitfalls, to control our responses, to solve problems instead of create them.   Dear God, PLEASE protect all of us, from each other and from ourselves, so that the dynamic we are creating will support growth for all of us.  Please let the suffering be manageable.  And God, IF the suffering  is great, please send someone along who can show us mercy and at least make it brief, but PLEASE do NOT let it reach THAT.... please.

UPDATE:  The next day, we went to OT - her observation?: his meltdowns/ outbursts are zero to huge too quick - there is no build up, so we can't see any triggers.  He needs to be seen at the university ASAP and we should look VERY closely in Seasonal Effective Disorder...  I am NOT crazy, I am NOT making this shit up, it IS insane.

This weekend we had a cub scout camp out - he was AWESOME - a few meltdowns, but on-point when he needed to be - did a skit with no hesitation, went to bed when told, ate what he was offered, played well with others.  After camp out we did a corn maze, only upset in competition with his sister, asked his daddy to buy a honey straw for each member of the family in our favorite flavors (and accurate with that) - totally lost it when we got home.  Refused to help empty car & clean-up - started talking about death and killing and just ran a stream of unpleasantries through the whole process.   How is it that he is "here" with us one minute and just NOT the next?

Changing by Choice

I was thinking about all my private drama today... about the power struggles at work, and the tension with family in watching the kids, and the gnawing fear about finances.. I was thinking about how yesterday I felt like I was sinking into my own private hell and I wanted to remind myself that the world is bigger than just my drama...

MAYBE I was just trying to convince myself that things really aren't THAT bad by comparison...

And I remembered...

A year ago this month my son was suffering from The Horrible Rash.  About this time we were 5 weeks into his bout with HSP (Heinoch Scholein Purpua - a rare autoimmune disorder).  This would have been the point at which he was not only covered with red and purple blotches as his capillaries exploded, but we had been to the ER twice because he vomited every evening.  He was unable to walk any evening after 4:30 pm because the joint swelling was too painful. His scrotum had turned a solid dark burgundy. He was missing lots of school. He would have less rash every morning and more every night.  We were having his urine tested weekly to be sure that he wasn't going to lose a kidney.  This is about the time we went to the pediatric immunologist at UVA and were told that 50% of patients have "kidney involvement", and that it had to go on for another 6 to 7 weeks before any kind of treatment would even be considered.  We were told what 3 doctors and WebMD had already told us: there is NO treatment, it simply goes until it doesn't.  The developmental pediatrician at UVA told us it was clearly stress related, which no other doctor would deny or support.

At this time last year I watched my 6 year old screaming in pain to be picked up and carried when he walked off the bus every afternoon.  At this time last year I watched my 6 year old's body attack itself every day.  At this time last year my son hurt, and didn't get better, and there was NOTHING we could do about it...

You know... things are NOT that bad right now.  My children are SAFE and they are HEALTHY and they are LAUGHING.  

I remember a conversation I had with another special needs dad last summer who's family was encountering some profound changes.  I remember telling him that I was ready for meteors, or unicorns, or the trees to get up and walk away...

A teacher told me today that she works with many parents of special needs kids that are not as accepting of their child's "specialness" as I am.   When you think you will loose even what you get, there is nothing left to fear.  It's not about clinging to the hope of a cure, or about mourning the loss of dreams, or about doing the therapy "right" so there's a chance of independent living.

Damn it, CHERISH e-v-e-r-y s-i-n-g-l-e h-a-p-p-y m-o-m-e-n-t!!!!!!!!!!!!!!!  

I have often been haunted by a clip that we saw in middle school about the Holocaust. They were interviewing survivors and trying to impress on us as students the horrendous scope of it. It was gross and riveting.  But I didn't feel FEAR until one very elderly woman in an overly bright colored dress said, "Hold on to the happy memories.  Work to keep them - because you will NEVER be able to forget the bad ones."

THIS day I am going to CHOSE to dwell in happy memories, to ponder the gift of my loving family and friends, to fill myself with the love of playing and giggling.  I will take my medicine, and I will deny the tears, and a small room in the back of my head will still be looking for ways to get out of this scrape, but I will NOT let them absorb me.  

'Cuz dude, it is NOT THAT BAD...

Further On Weird

The previous post was really the explanation of how I came to accept my weirdness.  It's a list of all the reasons I have been forced to agree with those who see me as weird.  And yes, I have come to a place where I own that weirdness, but it isn't always that easy, especially when it is your kids you are watching...

I did a lot of crying in high school, a lot of regretting and fearing, afraid that I really was missing the "best years of my life".  I have never been even tempted to party or get into bad stuff.  One could argue that I grew up in a conservative household, but that isn't really true.  Conservative by California standards, maybe, but not even remotely close by Southern standards.  The truth is I was afraid of guys, and I was afraid of people my own age.  That was driven home to me when I went off to college. I was TERRIFIED of these big block parties.  I was trying soooooooooooooooo hard to be outgoing and "do as the Romans in Rome", but I kept finding myself watching from corners.  In the long run, I did EXACTLY what I needed to do.  By the end of the first month I had established a core of friends (including a boy who would be my husband) and I stuck it out with their fraternity house.

One of the challenges I have had to face is my knees.  My knee caps have dislocated since I learned to walk.  One of my first memories is of playing in a lawn while waiting for dinner at a restaurant and my knee cap dislocating.  There is a place in my head where I simply do not have faith in my body to perform.  My knees became a challenge for me in college (cold weather is NOT my friend - I discovered I have some pretty severe arthritic damage).  I ended up missing a semester to get double knee surgery.  Lots of fear - of falling on ice, of traumatizing others, of not being able to do common things, like walk or dance- and lots of embarrassment - big metal braces, afraid of going out, dancing like a stick puppet.  The truth is that the time had come for me to face that challenge. And I did.  I took PT as my PE class for 2 years. I had to walk down stairs backwards for 2 years.  I was sure everyone knew who I was.

And I found I was still REALLY uncomfortable with being in groups of only my own age group.  So, I became a Girl Scout leader so I could be around kids again, and I went to the local knitting shop to hang out with the old ladies weekly.  I found strategies that helped me feel whole, comfortable.  At a university that is in the top ten in the nation, I discovered that I was too weird to fit in to even that academic crowd.

The weird didn't stop after graduation, of course.  I got married to that college sweetheart, and we struggled like young couples do.  I struggled to find a job I could live with emotionally, and finally gave in to Divine Will (stopped banging my head on the wall) and became a teacher, but unconventionally.  I have had a hard time keeping any job longer than 5 years.  It means I have experience in LOTS of different settings, but it also means that my parents and my husband keep telling me I am NOT a team player.  The job I have now is the most comfortable I have ever been.  It is seasonal, it is a teaching job, it is outside, it is very dynamic. And so far I have not pissed anybody off so much they want to make me leave. :)  I am capitalizing on all the experience I have from all those other jobs.  It's pretty amazing to feel like the Universe has put you right where it wants you.  I am afraid it won't stay that way, but it does feel good now.

So then I had kids.  Pregnancy was healthy for me, if uncomfortable. It was exactly what it was supposed to be.  We had a struggle with my 1st's delivery - oxygen issue. Stressful, but I kept thinking, "well, LOTS of people have issues."  Then we had an incident at 1 month.  The baby quit breathing. I had to recesutate {sp}.  I did, and we had the baby on oxygen for 4 days.  Again, stressful, lots of fear, but it worked out so "perfectly"... the whole thing could have ended MUCH worse if just one variable had been a little bit different.  I felt there HAD to be a divine message.  I decided to let God take care of it... I would accompany, I would shepherd, but I would not control.  I became "crunchier" about child rearing, pretty laid back.  And my children were perfect.  They look like porcelain dolls.  They attracted people everywhere we went.  They cooed and loved and hugged and snuggled.  We played and learned everyday.  It was awesome.

Until it wasn't.  My father challenged me about eye contact.  A stranger cop on the street told me I should have my kid "checked".  The church was very stressed about having the kid there.  There was HUGE amounts of frustration and physical outbursts. I was concerned for safety.  We started the diagnostic process.  It took MONTHS, YEARS.  Doctors all kinda said the same thing to differing degrees of severity - Autism Spectrum.  He was "high-functioning", but he had definite "issues".

Boy did I struggle.  I had been labeled at a young age, and I wanted to avoid that for him.  I wanted him to be able to define himself, to be whoever it was God sent him back to be.  Lots of crying, lots of praying, lots of hurting... Finally a gentleman I worked with said "it's probably a lot like having your child diagnosed with cancer.  You have to grieve for what your child could have been so that you can enjoy the child you get."  I finally had permission to grieve.  And I did.

But I came to realize, that if I really meant to accept him mas he was, to let him be whatever God sent him back to be, that labels didn't matter.  He IS weird, and legitimately so.  He comes from a loooooong line of weird.  He'll be labeled "gifted" or "geek" or "autistic" or "freak" or something anyway.  If the doctors needed one label to get help, so be it.  If the school needed another label to get appropriate services, so be it.  Humans have an innate drive to categorize.  I cannot protect either kid from all the labels they will receive in their life times.

All I can do is instill in them that knowledge that their differences are sources of Glory for God, that If they have a thing about them that just doesn't go away, then it is meant for them to have it, and they need to harness it, not deny it.

Language has power, yes.  But it is a human construct, not a divine construct.  We can use that power to create a focus word for our actions - I see it as a line that has love on one end and fear on the other.  We can use language to describe what we see.  From a place of love that description becomes praise and constructive criticism, from a place of fear that becomes insults.  We can use language to play.  From a place of love that play shows an honest respect for strengths and challenges.  From a place fear that play shows demeaning others to feel better about yourself, bullying.  We need to use language as a tool, not let it be the tool that uses us.  And we know that, instinctively.  That's why when my best friend calls my names during a card game it doesn't sting like when my husband mutters his disappointment under his breath.  I am sensing the underlying love or fear intention, not just the words.  You do it too.  The examples you give yourself will be more insightful than any I can make up.

So if you are that kid out there who is being called weird.  If you are being bullied - understand that what you are looking at is THEIR fear.  It has NOTHING to do with you. Make the effort in yourself to be making choices from a place of love, and people around you will know & honor your better intentions.  Not to say that other's bad mojo will never effect you. Ugly rumors cost people jobs and friends everyday.  But time will solve that, God will solve that.  Sit it out, choose to stay "in" love and the universe will deal you new cards, things will realign.  When I am at my darkest, when I feel fear driving my actions, I try to remember what I want people to say about me when I die.  Maybe morbid, but death has an undeniable honesty.  I want people to say that I was a loving person, the genuine article, that I did my best to be what God asked me to be.  And God NEEDS me to be weird so that people can notice how much I love them.

On Faith and Hormones

WARNING: do not read if you are grossed out by reproductive biology or offended by mild cussing.

So my depression has “flared up” again, and as expected, in timing with my… um…  “moon cycle”.  I am very listless, with out any real positive ideas, and the more I talk about it the more people try to shine sunshine up my A** and direct me to just find or have more faith.  No, I do not want to believe that I am a horribly deficient person, that I lack the most basic tenet of Christian religion, that I am just miserable to be around or that I have disgusting character flaws.  I have spent years and years trying to come terms with this depression, to try to treat, medicate, counsel, etc. this business away…. But today I had an insight!

It’s all about biology.

My period is miserable. Now go ahead, lecture me about how it is all my fault, about how the diet I choose will severely impact my symptoms, that I need to manage it better with exercise, etc.  You’re right, there are probably some things I could be doing to improve how I experience my symptoms. Bite me. The truth is that I come from a LONG line of women with VERY strong hormones. Every blood relative female for 3 generations (living) has had serious hormonal complications.  I do not need to give you a family medical history. You need to trust that I am not making this crap up and that I am intelligent enough to see the patterns.  From puberty through menopause, the women in my family have obvious behaviors and medical complications directly corresponding with their hormonal cycle. 

When I was younger I was told that childbirth would even out my symptoms, that it would get better, or at least more manageable.  My childbirth experience has shown me…..  that I go into labor every months.  As I sit typing my hips pull and scream with the same back pain I had for 3 days prior to my deliveries and I am squirming to get away from a severe discomfort I don’t even know I have until I get snappy about it.  Yes, I have seen several OB/GYNs about it, like all doctors they are guessing in the dark too.  I know my body better than they do.  Nothing I have tried or been prescribed really improves the situation.  In an earlier era, I bet I would have been that woman who spent her whole life pregnant… and I was HEALTHY in my pregnancies. (The reality is: I tremble to even consider trying to manage another personality in the dynamic of this family!)

So it is very hard to be pleasant and cheery when you are in pain, but really that is not the seat of the depression (more like the surface wave).  I get very, very irritable, really angry.  As my skin changes, and my body parts ache, and I identify those sensations that came with pregnancy, labor and nursing, again, knowing I am going to lose a whole day to fatigue, and have extra laundry (increasing the work load while decreasing the energy level), and have to cook even though it makes me nauseous, and migraines that will make the lights too bright and the kids too loud, is it any wonder that I also feel a buildup of resentment, frustration, anger?  That as I get impatient with my body, I get correspondingly impatient with everybody else despite my best efforts to be cognizant of it and counteract it?  Everything just gets TOO big, the little challenges become big, the big woes I can ignore at other times become gigantic, all encompassing.  My failures to keep house, manage money, be patient with my children are just highlighted by my condition of gooey discomfort for 5 days (nearly a week!)  I get bogged down, have trouble seeing the light at the end of the tunnel, lose focus on those positives that carry me through the rest of my life. I get depressed.

I reach out to my husband, to my mother, to my friends, looking for self-affirmation, for that flicker of the good person I must be to have earned their love & friendship in the first place… ‘cuz I sure can’t find it myself right now. 

My family/ friend support network is very familiar with this cycle, unhappily so. I have been extolled uncountable times to get meds, see a shrink, get with God, just HAVE FAITH to get me through this monthly drama.  I have tried LOTS of things (including all of the above).  I am a deeply reflective person, and I am breaking my heart, searching my soul, beating my self up trying to be “right”, to live up to the high expectations I have of myself, which of course just makes the depression cycle deeper.

This morning I came to a point of realization, of opinion, a response to my loved ones & myself:

I HAVE FAITH!!!!! Stop making me feel bad about my relationship with God because I am a slave to my biology.  Why are we surprised that as I find my self forcibly subjected to the divine process of biology over and over and over I have found a relationship with God, a FAITH, that sees it HAS to be pre-destined, that God’s will is UNAVOIDABLE.  To restate the obvious: My gender and family history are not MY choice.  I do not get any kind of feedback or input into when or how the whole thing goes down.  He will put me through what ever He deems necessary, regardless of what I think life is supposed to be or should be, or is for someone else, or was last week.  I have FAITH that God will put me through a continuous series of trials that will be unpleasant & painful.  I have FAITH that even when I think I am as deep down as I can be, it will get worse.  I KNOW it, in my heart, and my experience proves it.  Every month as I re-face some of the worst pain I have ever known, I do so knowing I will do so again in 3 weeks.  Every time I see my face break out, I know exactly how much more it portends.   When I am at my most exhausted, my autistic child will have the daily afternoon meltdown.

A college professor once warned me that I would be addicted to anger.  But anger provides strength, a strength that overcomes weakness of the body, provides adrenaline.  I used anger’s strength to get me through 2 knee surgeries, 3 years of post-op PT and the delivery I was awake for.  I have worked to control that anger on a more daily basis, trying to make sure that it doesn’t undermine my relationships and sabotage my support network or self-esteem.  I am 35+ years old, a True Adult in my head, and as such I have tried to accept that I have failures/ weaknesses, to own my faults. 

But on my weak days, when I hurt, when the inevitability of my enslavement to my biology overwhelms & frustrates me, it is really, really hard to be a friend to myself, to deny the anger that provides the strength I need.  Every month I watch the people around me withdraw in emotional self protection when I need to tap that anger, when I reach out too many times for that glimpse of who I am at other times.  When all I want to do is scream for help, the BEST thing I can possibly do is shut up and hide. 

It IS my FAITH that God has some divine purpose, that this is supposed to be making me stronger, not just punishing me, that keeps me hanging on, EVERY MONTH.  My FAITH gives me the strength to hide when I need a hug.  My FAITH drives me to keep looking for those tiny nuggets of love in new places when I wear my resources out.  My FAITH shows me the dog who sleeps protectively by, and the child who comes to tuck me in, and the husband who washed the gross dishes, and the friends on FB that send “thinking of you” messages, and the parents who let me call to cry, and the security of running water, and the boss that finds me valuable all the non-bleeding days I work, and the beauty of the quiet sunrise.   My FAITH is the last thing I see when everything else is dark to me.  My FAITH shows me that this too shall pass and next week I will be better able to appreciate the laughter of children.

I don’t need more faith, I need more FORGIVENESS.

I need to forgive myself for being unable to be as good as I want to be when biology assaults me.  I need forgiveness from my friends and family for being less than they want and need me to be one week a month. I need to forgive God for besetting me with this unique body.  I need forgiveness from the universe for being unable to keep my anger and sadness hidden every month.

And I am ashamed of myself for being mean.  I am sorry, everybody.  Please forgive me for being of the “weaker sex”, for giving in to my anger. I am trying to “accept” my weakness too, but sometimes it is very, VERY difficult to be in the depth of God’s will for me and not rail against it.  And the next time you’ve lost pints of blood and hurt like hell, I’ll be sure to remind you to “suck it up cupcake” too.