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This little nugget of wisdomly wisdom came lilting from the backseat of my car one day.

Me:  But, Dagney, you don’t even like pickles…

Dagney:  **smiles in a way that conveys that I am somehow missing something**

Me:  Hmmm…well, I do like pickles.  And, you’re right, life’s definitely not all pickles and rainbows.

This followed a conversation we had about Hank, autism, being different.  It made me wonder if she already realizes, just a little bit, how much Hank’s autism is bound to effect her life…how much it already has.

I know that she loves her brother.  There have been times that I have wondered about her true feelings.  In my most pathetic moments, I have come right out and asked her, “You love your brother, right?”  She always answers in the affirmative.  However, it’s the unsolicited statements of love that are more convincing.  I got out of the shower one morning to find “I love Hank!” written in the steam on the mirror.  Other times, she will just blurt it out along with “I love mama!” and “I love daddy!”  She gets excited when Hank gives her a hug, which doesn’t happen very often.  It makes me sad and happy at the same time.  It’s an emotional limbo that I have become resigned to, if not comfortable in.

I know that she longs for a normal sibling.  She wants another brother or sister.  One that will play with her.  I long for that for her, but it’s just not practical.  I only ever wanted two children.  But now…if I was a bit younger…if we were more financially set…if we had a bigger house…if, if, if…I would do my best to give her that normal sibling experience.  A little while back, I thought I was pregnant.  It turned out that I was not, and I mourned that little life that blipped in and out of existence, if only in my mind.  I mourned the loss of that chance for Dagney to have normal sibling interaction.  I regretted the loss of that chance for it to not all be on her small shoulders one day.

She loves him.  Despite the fact that he raids her closet for her clothes hangers.  Despite the fact that he blows through her room like a miniature tornado.  Despite the fact that we don’t always get to go and do things that many families do with ease.  Despite the fact that she has to explain him to her friends.  Hopefully, her sibling experience will teach her so many of the good lessons in life…tolerance, understanding, hope, patience, humor, love.  I see all of these attributes blooming in her already.  Some of them more than others.  Hopefully, we can avoid the thorns and pitfalls…bitterness, jealousy, hate.

“Life’s not all pickles and rainbows.”

Maybe Hank is the pickle.  Maybe autism is the pickle.  Maybe it’s one of those sweet pickles, so that if you have to eat a pickle, it’s the best possible pickle.  Maybe I am giving her too much credit, and she was just talking nonsense to mess with me.

Maybe I will have a turkey sandwich for lunch.  With pickles.  The sweet ones.


Me and my couch…

This is my couch, or a close approximation anyway of how it looked when we purchased it.  It does not look like that anymore.  It has taken a beating.  It has been eroded by time.  I think it may have a case of Hank-induced Post Traumatic Stress Disorder.  It has become resigned to its existence, but I detect some bitterness.  Of course, that may just be from the coffee that Hank poured on it last week.

Recently, I can really identify with that couch.

The couch is rarely fully put together.  The cushions are removed and slung about, leaving its guts bare to be bounced upon by ungentle feet.  It has springs popping out, coiled and ready to snag unsuspecting victims.  It is covered with stains, some visible, others hidden and ingrained.

You see, one of Hank’s favorite activities is to dump all manner of everything onto that couch.  To date, the list of abusive substances includes water, tea, sodas, coffee, five different colors of paint, toothpaste, chicken soup, diaper cream, lotion, whatever is inside a snow globe, rice, noodles and other unmentionables.  I can clean the outside.  The cushion covers have been stripped and washed so many times that one is ripped at the seams and no longer zips.  But the inside, I’m pretty sure that it is permanently scarred.

I am that couch.

Many nights when Hank falls asleep, oftentimes on that couch, I study him.  His face in perfect repose.  The even rise and fall of his chest.  His eyelashes casting spiky shadows.  And the feelings overwhelm me.  The love, the sadness, the wonder, the determination.  It makes me heavy.  It makes me light.

John will carry Hank off to bed, and the couch and I will breath a sigh of relief.  If it’s not too late, John and I will watch some TV, frequently cuddled together on a single couch cushion because the other is getting over its most recent trauma.

The couch, plus Hank and minus the cushions, 2008.

Absenteeism…

I have been absent.  From here.  From work.  From life in general.  The only place that I have been consistently present is in my own head surrounded by a cacophony of thoughts and emotions that refuse to be filed away to be dealt with at a later date.  Apparently, the filing cabinet was already full.

Well, I am tired of cowering in a dark, dank corner of my psyche.  I’m a social person.  I usually reach out to people.  Seclusion is so not good for me.  So, why my psyche decided to run and hide and cut myself off from those that know and love me is just a mystery to conscious me.  Why haven’t I called?  Written?  Answered with something other than an automatic “I’m fine”?  I don’t know.  For some reason, at that point, my misery did not want company.

Anyway, enough of that.  I am going to be present.  And, I’m getting a little help to do that.  I am seeing a therapist.   I have never done therapy before.  I have had one session with her, and I really like her.  I think I may have lucked into the perfect therapist for me, and I am very grateful.  I didn’t want to go down the full list of in-network providers before I found someone I liked.

So, I am reentering society.  Someone buy me a white dress and throw me a debutante ball.  Or, let’s all get together for food, margaritas, dancing, laughing and much regret the morning after.  I could so deal with that.

Love…

This really should have been Volume 1.  Simply stated, my family kicks ass.

My parents are amazing people.  They have dealt with some very difficult stuff in their life together.  Child illness…child disability…child illness again…child death.  DLK, January 22, 1981 – August 28, 1989.  (Hank looks remarkably like him.)  How did they make it through and still remain the sparkling examples of humanity that they are?  How did they continue to cultivate such love, faith and humor through such hardship?  They could have easily become so bitter.  But, they didn’t.  Why?  How?  Because they kick ass, that’s why.  Through love, faith, hard work and a strong foundation, that’s how.  My mom never fails me.  My dad is the most rock solid man on earth…and, he knows how to fix just about anything (bonus!).

My mom and Dagney playing Jenga, Christmas Day 2009.

My dad, wearing his patented couch camouflage.

I have already written about my sister.  She used to be a real pain in my ass, always following me around and bugging the crap out of me when I just wanted to be left alone to read my 900-page book in a quiet corner (wow, there is an uncanny Dagney parallel there).  However, when I was 14 and she 11, we became friends (that year would be 1989, notice the parallel with the date above).  We are so different and so alike.  She has her own busy life, but she always has time for me (and I for her).

My sister and her husband.

My husband’s parents are equally amazing.  We literally, really and truly could not survive without them.  I take Hank to their house every morning and he catches the bus to school from there.  They get him off the bus in the afternoons and pick up Dagney from the bus stop.  As if that is not enough, they do so much more.  They are two of the most giving people I have ever met, and I am so very thankful that I can claim them as family.

And then, there is my husband.  He is my soul mate.  We compliment each other beautifully.  Neither of us are perfect, but we are perfect for each other.  I really think that he deserves his own post.  I will try to get around to that.

My family unit, sans me, of course.


For my first installment WMLDNS, I’m not going to go for the obvious.  I’m going to go off the board a bit because I have been thinking about this of late.

Yes, Autism sucks.  Autism sucks the biggest, nastiest, most undesirable thing to suck that you can imagine.  Other things suck equally and more.  I would never claim that autism is the worst thing to happen to any person ever.  That would be silly, and yet, some people like to indulge in such arguments, as if everyone’s life experiences are not subjective and relative and defined by each individual.  So, if anyone feels the need to type a statement such as “it could be worse” or “at least it’s not [cancer, cerebral palsy, death by fire, consumption by grizzly bear, etc.]” or “you should appreciate your child’s uniqueness”, please, refrain from comment.  Do me a favor and keep your thoughts to yourself.  I don’t need you judging my pain and suffering.  I don’t need your commentary on my joy and happiness.  I don’t need you.

So there.  I didn’t mean to rant, but I kind of like it.  I will leave it.

The point that I am trying to get to is that despite the vast suckage that autism is, my kid is pretty damn happy.  He smiles all the time.  He loves school.  He likes to go places.  He loves his family.  He loves to play.   He has the cutest little sense of humor.  He is sneaky and mischievous.  He only seems completely miserable when he is denied something that he wants, and , well, that’s pretty typical.

Yes, he does retreat into his stim-world with regularity.  Don’t we all need a break sometimes?  Yes, he does have his frustrations that will only increase as he becomes older and more aware.  But, we will deal with them as they come.

Right now, he is pretty happy, and that does not suck.

I am a bad, bad blogger.  I assure you that my “Reasons my life does not suck…” post is only delayed due to my being busy/lazy and not because I am searching for the perfect bridge from which to fling myself. In the meantime, I will post music that I like.

I just got the new Motion City Soundtrack CD.  I like the previous CD better, but I really like this song.

I also got the new release from Benjy Davis Project, whom I truly and deeply adore.  But, none of it is posted on YouTube yet, and I don’t have the skills to do it myself. 

Later…

I have this friend.  Actually, she’s my boss, but I put her strongly in the friend category.  We immediately hit it off when she was hired.  We’re on the same wavelength.  She gets my dry twisted humor, I get her obscure cultural and literary references (most of them anyway).  We have laughed a lot in the past couple of years.

She came into my life right at the beginning of the “is it autism?” process, so she has been a first hand witness to all the subsequent very low lows and very high highs that are an inevitable part of the whole parenting a kid with autism experience.  She told me later on that she never knew what to expect when I came in to work.

Me:  Was I that bad?

Her:  Yep.

Me:  Yeah, I guess I was.  Thanks for dealing with that.

Her:  No problem.

I still am that bad every now and then.  I don’t really let her see it any more though, if I can help it.  I seem to have reached a point where talking about it with her is counterproductive.  This happened in two parts.

Part 1:

I was sharing some of Hank’s lab test results with her.  I pointed out some really impressive metal pulls on a stool analysis.

Her:  Hmmm.  You are spending a lot of money on these treatments, are you getting results?  Is he getting any better?  **she directs a look of sincere concern with a mix of pity at me**

Me:  …ummm…uhh…*stammer…stutter…mumble something…get the hell out of her office as quickly as I can*

I am raging pissed.  I have shared a lot with her about Hank’s treatment protocol.  She is open-minded about alternative therapies and such, and I shared with her in good faith that I had found a supportive ear.  Doesn’t she know that I have my own doubts?  It’s not like there is an established treatment regimen for autism.  There is no How to Reverse Autism for Dummies do-it-yourself manual that you can pick up at B&N.  I have researched.  I have chosen a path.  I have put my faith in a process.  As well-intentioned as her question may be, HOW DARE SHE compound my doubt?!  HOW DARE SHE question MY decisions about MY child?!  I don’t need a fucking intervention, and how in hell she thought it was an appropriate thing to bring up is beyond my comprehension.

I’m not sure my anger is entirely rational, but it is mine and I OWN it.  I mentally strike a big, black, permanent line (with an asterisked side notation of HELL, NO!) through her name  on the short list of people who I confide in about Hank’s treatment.

(The list pre-edit.)

Part 2:

Hank’s antics have been many and far-reaching of late.  I share some of his most egregious exploits with her.  Some of them are actually quite funny.

Her:  My God!  That would drive me insane…yada, yada…I don’t know how you do it every day…yada, yada…Your situation is so difficult…yada, yada…

Me:  Well, it’s not that bad…

Her:  No, it’s really hard.  I admire you for being able to do it.

Me:  Ok.  Thanks.  *Inwardly, I wonder why I am mentally cataloging the best ways to kill myself.  Do I go for scandalous drama with autoerotic asphyxiation?  Or do I go with the understated but always classy Vicodin overdose?  Jumping off of buildings and bridges is so overdone.  Where’s the originality?  Maybe I should go with something more covert like slowly atrophying my brain into a vegetable state by watching marathons of Rock of Love and I Love New York…

Me:  Hey!  Wait a damn minute. My life does not suck!  Quit acting like it does!

I don’t say that out loud though.  I’m back at my desk staring blankly at my computer by the time I realize exactly why that whole conversation made me feel so icky.  It turns out that there is a fine line between acknowledging the difficulty of someone’s situation and giving them directions to the nearest bridge to jump off of, and she is precariously straddling that line in every conversation I have with her about my dear, sweet son.  I mentally revise the list of subjects that I should just avoid with her.

Next post…Reasons why my life does not suck…