Tuesday, March 22, 2011

A Light Blue Birth Day

Hulu+ is one of those modern marvels that came upon me suddenly and now I take for granted.  It enables me to watch TV shows of interest and greatly compensates for the lack of decent cable in my house. I was thinking - while ruminating about my birthday - that Hulu+ would have been a definite help to my parents, especially my Dad who took the night shift of walking and rocking me as I began my life with several long months of screaming 20 hours a day.

My baby album has some pictures of exhausted, almost shell-shocked parents. I must have been one  of the most photographed babies around, what with a photographer father, the darkroom in our basement and a dad who found me - and later, my sister - to be endless subject matter.  Except for those first  weeks.  There were a few pictures.  But it is apparent that most of my parents’s energy was going into keeping me alive and keeping their sanity.  Dad said the hardest part was rocking me and trying to stay awake after the TV and many radio stations had signed off for the day.  That would have been a Hulu+ worthy situation.

Now, some fifty years past the screaming stage I was preparing to celebrate my birthday with my family.  I caught a fraction of a promo for the NBC show Parenthood, a show which I don’t follow with any regularity; it being a little too self-important and not nearly as funny as the movie or its first go-round as a TV program.  What caught my attention was a confrontation between a child and his parents in which he asks, “Do I have Aspergers?” 

Having at least one child with Aspbergers (and some relatives that I can only make my own armchair diagnosis of; let’s just say that the autism spectrum fairy has sprinkled a little fairy dust on this crowd) I had a passing curiosity and made a note to try to catch it later on the iPod. 

It’s been three weeks and Hulu+ has brought me plenty of Parks and Recreation, The Office, 30 Rock and other comedic interludes.  And I still haven’t watched all of Parenthood.

My birthday celebration wound down early and the TV was on as I was getting ready for bed.  I was able to catch the last twenty minutes or so of the Asperger’s episode.  The chuckling moments of resonance that I expected did not happen.  And I ended my birthday in tears.

The tears are hard to explain.  Especially since I cry so rarely that one might wonder if I even have functioning tear ducts. Asperger’s in the family is not tragedy.  We’ve weathered greater tragedies and near disasters.  And few memories will push me over the brink into heartsick lachrymosity. 

There are so many memories that I cherish.  And I am diligently, with prayer, not trying to live in regret.*  I’ve confessed my sins.  I’ve been absolved.  And I can gather up the regrets and see how they have brought me to where I am today.  But there is one thing, one time, that I replay in my mind and I wish I could forgive myself.

Years ago - it’s such a blur that the best I can say is mid-1990’s - I signed my son into a locked psychiatric ward.  It was a bad time.  On top of other familial health and financial problems, we had an eight-year old with explosive rage issues and other problems.  At the most desperate point, the neurologist suspected some type of temporal lobe epilepsy and said that the quickest way to get the needed EEG when there was a massive backlog in outpatient appointments was to bring the boy in to the Children’s Memorial ER when he was in the midst of a rage episode and have him admitted for inpatient testing.

The half hour drive to the hospital was dreadful but I felt hope that we were on our way to finding some answers.  I had not expected that the bed in which my little boy would wait - for a week! - for his EEG etc. would be in a psychiatric ward.  Not that there is anything wrong with psychiatric wards.  Except the concept is totally different when you sign your child in to one.  The one ward in the hospital with highly restricted access and visiting hours.  The one place in the hospital in which parents are not only not encouraged but not allowed to stay as long as they wish with their children.

Don’t get me started on the requirement that every evening’s visiting hour required a mandatory parents’ support group meeting. Isn’t that sort of a privacy violation or am I just being to sensitive? We had a daughter who had been under the care of a nephrologist at Children’s and there was no mandatory kidney chat group.  Another daughter was seeing a neurologist for chronic migraines and calcifications of the basal ganglia, but there was no brain exchange tea time. 

Rick went to the support group - which he said was superfluous since everyone was there for a different reason.  No big deal.  And I sulked in the waiting room, wringing a tissue and pretending to read an old issue of People.  Just to spend some time with my boy.

He  looked sad.  Puzzled.  Hurt. Yet curiously detached. I put on a brave face explaining that this would be all over soon and the doctor would know how to ‘make things better.’

He still doesn’t say much about his time there.  Except for the fact that he was allowed to stay up all night playing video games to prep for the sleep-deprivation EEG.  So that was cool.  The EEG?  Some abnormal brain waves.  No definite diagnosis.

There were the drugs that followed.  The Depakote that caused lethargy and hunger and reduced the rage attacks solely to delays in pizza preparation.  The Paxil that he didn’t want to take because he heard it caused liver damage.  Smart kid.  Clever kid.  He found the bottle, climbed on the roof and put in some sort of unused chimney.  I wonder what the contractors thought of that when the next owners of the house did their massive rehab.  The Prozac dissolved in Coca-Cola, which worked for Depressed Migraine girl but didn’t do much for the boy.

Life went on.  More outpatient tests.  The Tourette’s diagnosis**, the autism spectrum disorder diagnosis, and the “BLANK is a very unusual child” diagnosis.   (see Ivory, 24th Street, Flag from 2002)

None of which is tragic.  It just is.  The boy is the way he is and I adore him.  He’s smart, witty and kind.  He’s OK. He understands that he is loved. I accept the fact that there is not much spontaneous expression of emotion - no “I love you, mom”s  unless prodded by his father.  He does not socialize much and large extended family gatherings are a sensory overload hell.  His extremely introverted mother understands.

I don’t ask for “I love you.”  But I did once ask to be forgiven for that week in the psych ward.  He says he has little memory of it and harbors no grudge.  (Though he found the eight follow up session with a neuropsychologist to be tedious and does remember the failed MRI attempt when the triple anesthetic cocktail of chloral hydrate, Nubain and something else could not knock out our little Rasputin.)  The boy said there was nothing to forgive.  And that my tears disturbed him.

In a family where the neurotypicals are greatly outnumbered, life goes on. That’s the way it is and that’s what we know.  I pray that all will be well.  And I pray that my next birthday won’t celebrate another year lived in regret.

*If I’m feeling blue a little Bubble Boy helps.  The irony of it being about a young man with an overprotective mother is not lost on me.  It helps.  Especially Danny Trejo’s character reminding him (and us),  “Don't live in regret, ese!”

**The Tourette’s has diminished with time.  And there never was the stereotypical dog barks and coprolalia.  Echolalia is still an issue.  That’s why I prefer to say High-Functioning autism - it doesn’t cause the flurry of linguistic fun the Asperger’s does.  I’ll leave that to the reader’s imagination.

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