Saturday, June 11, 2011

Lesson 62: There's A Place for Them

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Sorry, everyone.  For the life of me I cannot figure out why my video won't post.  It is something wrong with the java script reading and I can't figure it out. Eloise is puzzled, but the embedded link on here should work.  Click on it and it should take you to a picture slide show of my now 14 year old nephew Erik.  If it doesn't, go to youtube and put in the search box this:  June 13, 2010 elafuria     (yes, I know the date is a year off, Slovenians.  You are picky people.  It was the date of a snapshot I took of him on his birthday last year and it grabbed as the title for some reason).

Back in 1971, had I been born male, my name would have been Erik.  I would have still loved school, played football, and drank beer.  No doubt gym teacher material.  Whoops.  Physical Education Instructors.  My teacher peeps don't like that too much.  I stand corrected.  Nevertheless, I would have been a teacher and liked beer and football no matter my gender.  I am glad I am girl though because there is only room for one Erik in this world, and he turns 14 on the 13th of June.

Erik is the most unique individual you will ever meet.  He is almost hard to describe, even for a wordy girl like myself.  Erik has severe autism and communication impairments.  He has yet to speak his first clear word, although there have been utterances which have given us hope in recent months.  Imagine raising a child whom you've never had a two way conversation with.  He is a boy, just like anyone else. Erik gets tired, hungry, crabby, silly, wild, and has to go to the bathroom just like the rest of us.  Problem is he has a tough time getting the message across.  Those who know him best, my sister, her husband, his brother Jack, his teacher Mr. Fritts, his school aides Sarah and Jenn, and his therapists Rob and Candace can read him like a book.  They know what he wants, when he wants it.  They can tell by his facial expressions, hand gestures, and sometimes by the sound of his growls. 

On top of the autism, the boy also suffers from Epilepsy.  The seizures seem to come out of nowhere and leave him vomiting and sleeping for up to 12 hours after them.  They are under control for the moment, but something as simple as heat or a slight hormone change can set them off again.  When this happens, that lanky boy sleeps between his parents, with one or the other of them awake, holding an all night vigil by his side.  The seizures often set off sleep disturbances which can last for a week or more.  He often awakens for the day, wild and ready to go at 2:30 in the morning.  He's done this for nearly all of his life.

Am I describing Erik in this way hoping for sympathy?--absolutely not.  Sometimes though everyone really needs a reality check about what life is really like living with autism.  It's hard.  In my book that will never be published, Misunderstood, I wrote a true hard nosed account of the pressure and heartache of it all.  I wouldn't have a friend left in the world if I published it for the world to read, and my sister and I really need our friends now.

Yes, we need you--all of you, whether you know us or not.  Be aware that beyond the melodrama of the commercials shown during April, which is Autism Awareness Month, life is challenging.  The walks that raise money and TV spots that focus on the positive are great.  They are no doubt improving public perception of this puzzling problem that is plaguing our children.  Know that for every autism triumph, there are thousands of heartaches and headaches just to reach one single victory.  Like for Erik, a victory would be putting his arms in his own coat or a shoe on his own foot.  If you see someone in public throwing a tantrum, consider they may be autistic.  Don't just walk on by with fixed stares trying to pretend that you don't notice to spare the family any humiliation.  We're way beyond that folks.  We're tired and worn out.  Ask us if we need any help.  We most likely will say no, but it sure would be nice to hear once and awhile.  We need you to realize that just bringing a child like Erik or Natalie to a summer gathering like a picnic takes hours of preparation and management just to survive.  So thank us for coming.

I understand your discomfort.  Many of you may not have the slightest idea how to talk to or help with an autistic person.  You think that you need a college degree or must be a parent of a handicapped child, in order to know what to do.  Guess what.  Neither did we at first.   Autistic people are all so different.  It is hard to say there is one approach that works with all of them.  The best advice I can give my readers is to talk to them as normally as you would any other person their age.  Talk to Erik about the Green Bay Packers and how they got lucky against the Steelers this year.  Tell Natalie you love her lime green nail polish and ask her what song is playing on her iPod.  They may not answer, or you may not understand their responses, but just smile and nod.  That will work.

A doctor once told me a little over a decade ago that having an autistic girl was like going out in your garden, digging for a potato, and finding a diamond.  Although autism does affect more boys than girls, the numbers are becoming more balanced.  Natalie has four girls in her class this year. 

I did find my diamond, doc, but she's in the rough.  I'm chipping away at her tough exterior to get to the sparkly beauty that lies within.  When you can't remember what to do when confronted with an autistic individual, put this mental image in your head--diamond in the rough.  That will help you remember that there is much more beyond that hard shell.  That's how Erik will spend much of his 14th year--getting polished up by the most wonderful, patient people on the planet; his family, his teachers, and our friends. 

Happy birthday, Erik.  Green Bay stinks, by the way.  I can't wait for the rematch!
Aunt Eloise

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