Tag Archives: autistic adults

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.

 

The Loss of a Pet

Living on a farm… death happens.  

It happens fairly often, actually.  We have five new baby chicks, and one of them drowned in the waterer last week.  One night a raccoon got into the adult hens, killed one of them and left most of its body.  Ray has lost pet mice, tropical fish, and a very long-lived crayfish.  Last year, our old goat passed away. 

But none of these events were anything like losing the family dog over Christmas week this year.  Soon afterwards, I wrote the story of his last days because the guys’ reactions were so moving.  Here it is below.

Nemo passed away yesterday.  Our old, smelly, incontinent, hairless chihuahua mutt who lived in a crate in our dining room for the past year.  No one knows how old he really was… he had been rescued from a dark basement, starving and without water… and he became part of the dog family on the hill after we read his sad story on Craigslist.

His basement experience led him to drink as much water as he could find…. hence the incontinence when the gallon of liquid moved through his tiny body.

So he lived in the crate….

But a funny thing happened. This smelly and quite unattractive creature somehow won the hearts of these guys here on the Hill. Jose always entered the house calling to Nemo, so he could hear him howl.  Michael lifted him out of the crate each evening to sit in  the rocking chair with him and tell him stories of the day. The dining room is the center of social activity, and everyone was in tune with Nemo’s needs.  ‘Nemo do you need water?’ ‘Nemo needs to go out…..get him outside quick!’ ‘Where’s Nemo, he’s been outside too long’. ‘He’s cold’.  ‘He’s hot’. ‘He’s still hungry we need to feed him more’. ‘Give him chicken’.  ‘Nemo’s at the door, someone LET HIM IN!!!!!’

Six guys with social issues, coming together over an unlikely mascot.

We all watched Nemo fade away these past weeks; he was treated with such gentleness and compassion.  And when it came time to say goodbye, everyone came together to prepare his gravesite, our first here at the house.  The guys dug a hole together, taking turns…. the goats and pigs watching from the other side of the fence.  We told our favorite Nemo stories and laid him gently down.

Then Jose howled.  And we all joined in.

And today, the day after, the guys are still howling… and visiting Nemo’s grave.  And saying how much they miss him… and giving each other HUGS for comfort.

Genuine empathy transcends all social missteps.  Social issues on hold for now.

Nemo and Kit 2010