Monthly Archives: April 2012

The WC Press features Ray for Autism Awareness Month

   

     Ray works every Monday and Friday, cleaning two different gyms in West Chester PA.   He takes public transportation home on his own …we actually have a bus line that comes all the way out here to rural southern Chester County…. and gets dropped off in West Grove (about 6 minutes away from the farm).  He deposits his check each Friday in his local bank before getting picked up by someone to take him the last leg home to Juniper Hill.

He was featured in this month’s WC Press, a West Chester magazine.  Check it out!  Yay Ray!!

Click on this link to read Ray’s article!

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Holidays and autism: free-to-be age inappropriate

Yesterday morning, Brent arrived at the main house at 700 AM to search for hidden easter eggs, something he has done with our family for 25 years.  He wore bunny ears, and found every egg but one (hard-boiled, and yet to be found, ugh) of the 3 dozen we colored the evening before.  His giant Easter basket (another 25 year old tradition) contained all the usual chocolate eggs and bunnies, jolly rancher jelly beans, and a few kitschy plastic Easter toys… but the best part these days are the things that he buys himself, wraps up, and gives to us the week before, to make sure the ‘easter bunny’ puts them in his basket.

Brent as a Hershey’s Kiss

As he has gotten older, he has taken matters into his own hands, refusing to take any chances that the holidays won’t happen the way he wants them to. He spent many years tormented with the possibility that something would happen before the big day came…. Christmas, Easter, Valentine’s, Halloween, May 10 (his birthday).  For a month leading up to any event, his anxiety was through the roof and he would melt down at the smallest disappointment. Not any more.  He has figured out that if he just does it all himself, he doesn’t have to depend on any of the rest of us to do it right.

He buys himself birthday presents and Christmas presents, wraps everything up, and hands them to people weeks before the actual day, and instructs them to give them to him on the holiday itself. It’s not that we would ever forget a present for Brent on any of these occasions, EVERYONE that knows Brent loves to get him things on holidays… he gets so much pleasure out of a box of Lucky Charms cereal, or a ball of yarn or a key to your car.

But he just has to be SURE. He remembers a time when he was told that holidays were for children, that he was getting too old to trick or treat…. he remembers a time when he heard rumors that Santa and the Easter Bunny were not REAL, and he doesn’t want those times to ever come back.

Twenty five or so years ago….. as a young and inexperienced student of ‘behavior modification’ for people with intellectual disabilities, I was trained to teach ‘QUIET HANDS’. …  and ‘age-appropriate’ behavior…. to facilitate ‘fitting in’ with society.  I didn’t question this, back then. (Oh yes, I question it, now.)

Dylan and Brent 2008

It was my son, Dylan, who made sure, long ago, that we preserved these holiday traditions for Brent.

Brent joined our family in 1984 when he was 16 years old, and by the time Dylan was born… almost 22 years ago… I had already begun to try and make Brent ‘understand’ that he was an adult (he was 21) and that adults celebrate holidays differently from children. There were a few years before Dylan knew what holidays were all about, and those years were frustrating for Brent.

Not to worry, those days are gone forever.

It began with Christmas Eve, with Dylan and Brent putting on their Christmas pajamas and listening to Grandma Bobbie read ‘The Night Before Christmas’ before they went upstairs to Dylan’s bedroom. Brent moved to the spare bed in Dylan’s room for the night.  They knew the rules… they had to wait until 630AM before they could go downstairs to see if Santa had come.  Sometimes they would sneak downstairs in the middle of the night together, anyways.

Christmas 1998

But it was Halloween where we REALLY got creative.  It was fine for a few years when Dylan was really young… but there came a time when I just couldn’t let Brent trick or treat in the community anymore.  You can not imagine how scary he is dressed up as a clown.  Clowns are creepy anyways, but with a stiff autistic gait and no response when spoken to….

So we solved this problem. Brilliantly, I might say.  We had two houses on our lane (and now we have three houses!  last year was great fun!).  Each house has 4-5 doors to the outside, counting the garage, basements, playroom, etc. Brent gets dressed up in his costume (actually, Brent wears his costume for at least three days, everywhere he goes ).  We stay inside the house, and Brent runs around outside of the house knocking on each door and exclaiming TRICK OR TREAT! when we answer with a bowl of candy.  So now Brent gets to Trick or Treat at 13-14 doors, and ends up with a bag full of Halloween candy.  Last year, the other guys on the Hill wouldn’t join him, they thought it was childish.  Guess what?  This year they did.

And as for all of us boring neurotypicals who tried to end this childish behavior?  We are embracing Brent holidays…. and now we get dressed up in our costumes and run around on the INSIDE of the houses…and change our wigs and hats and masks for each door that Brent knocks on.

And yes, each Christmas Eve Brent still packs his overnight bag and walks next

Brent and Dylan, Christmas 2012

Brent and Dylan, Christmas 2012

door to our family home where Dylan is…. to spend Christmas Eve in Dylan’s room.  And my absolute favorite moment of the year is STILL the time that comes on Christmas Eve after Brent reads us ‘The Night Before Christmas’ in honor of Grandma Bobbie… and he and Dylan go upstairs in their Christmas pajamas, and Dylan tucks Brent in and reminds him to wake him up at 630AM (Dylan needs a little help getting out of bed that early now)… so that they can go downstairs and sit together by the light of the Christmas tree lights…. playing with that kitschy singing toy Santa that Brent had on his Christmas list.

 

So, about this autism and empathy thing….

People with autism lack empathy.

Really?? ….I’m confused. Do the people who say this actually live with a person with autism… do they spend a lot of time getting to know people on the spectrum?  Have they experienced sad events together with their friends who are autistic?

I have.  Many many times over the years.  I’ve seen their anguish when a friend or animal is sick or hurting…. and I’ve seen how quickly they respond when a stranger needs help.  I see …and yes, I can feel…their pain when they have unknowingly hurt someone’s feelings or disappointed someone that they care about. I hear their apologies, and those apologies come from a place so deep and sincere that I expect that any second they will shut down completely out of sheer empathy OVERLOAD.

Lack empathy?  Not a chance.  But I do understand why so many neurotypical folks PERCEIVE a lack of empathy in their students or acquaintances with autism.

The other night around 10… Ray and Michael grabbed the lantern and headed up the hill to Ray’s house.  Down at the main house, I was checking Ray’s mouse live- trap, since we have had an influx of cute little meadow mice lately with the coming of spring.  I opened it up, and one of those cute little meadow mice jumped out of the trap and into the sleeve of my shirt and ran up my arm and onto my stomach… under my shirt. Now… I am not afraid of mice. Or snakes, spiders, rats or scorpions.  I live with them, Ray collects pets like this. I like all these critters almost as much as Ray does.

courtesy of bluebison.net

But it caught me by surprise and I screamed… LOUDLY.  and CONTINUOUSLY for what seemed  a very long time… because I could not get the thing out of my shirt and it was running around on my body.  Andy and Jose just watched me jumping around… and afterwards, Andy says ‘WOW! You scream like a girl!’

Ten minutes later, Ray and Michael return, carrying LEGOS of course.  Still excited, Jose and Andy tell the mouse story…. and Michael says…..

‘we heard you screaming all the way up the hill when we were walking up.  It sounded like you were really hurt, or like something was attacking you’

and I said ‘then why didn’t you run back?’

and Michael says..’ well  we were pretty intent on finding this LEGO piece that we were missing.  We’re back now.’

Uhh OK.

This is not lack of empathy.  It’s something else, hyper focus …or something.  To their credit in this particular case, I truly believe that sometimes the guys here assume that I am some kind of super human that can not be physically hurt… similar to a Bionicle or HALO individual perhaps, guys?…. (perhaps it is my ‘Bossy Big Sister‘ New Yorker attitude).

I am neurotypical but have lived with adults on the spectrum for 30 years. This kind of focus is going on all the time here.   Often, a problem will arise around a disruption of focus…of hobbies… or computers, televisions, or music…. something in the present environment that has to be shared with others.  And when this kind of focus is interrupted, these guys often have little tolerance or understanding of the person who is interrupting them.

I have tried to get them to explain to me how they are feeling, but I’ve never once succeeded at the time it is happening. It is during these instances that you see another side of these generally kind and gentle, compassionate guys. No matter how many times they are asked ‘how would YOU feel if …… ‘   or… ‘don’t you think it’s time for someone else to get a chance, you’ve had your chance for 4 hours’… there’s just ALWAYS a reason (actually, many reasons) why they shouldn’t have been interrupted because what they were doing was very important. So sure, in that particular moment, there is not much empathy… anywhere.

but by the next day…. they always rationally discuss possible solutions to the problem… and they apologize to everyone involved.

So am I missing something here?  Is this what is meant by ‘lacking empathy’?  I respectfully disagree.

April is Autism Awareness month, and tomorrow is April 2, World Autism Awareness Day.  The numbers are out and autism is now 1 in 88 births… we are past ‘awareness’.  Isn’t it time it became ‘Autism Appreciation and Acceptance’  instead?

And that is my rant for the month.

The border collie puppies visit the Hill

P.S. And speaking of empathy… in case you missed it, the family dog passed away recently, and I blogged about it here