The Politics of Pumpkins
By Nancy Hokkanen
On Halloween my son's fifth grade class had a special math project, and I volunteered to help. Six pumpkins were handed out and groups of kids were to weigh and measure them, guess the number of seeds within, and carve them into jack o'lanterns.
Our table had two parent volunteers. The other mother also brought an adorable preschool sibling – whom I referred to as "him," until told "his" name was Karen. Maybe that was why I sensed a chill from the stone tiki face at the other end of the table.
The teacher explained the pumpkin activities and I expected that we parents might model some of the cooperative behaviors he'd laid out. But it seemed not to be. I could barely establish eye contact with the other parent, much less "Hi, my name is." Social Darwinism seemed to be the order of the day.
I decided that I could not bear to see the pumpkin lid cut improperly, so I seized control of the orange globe. Following the commandments in the Pumpkin Masters bible, I cut out an angled lid with a notch, eschewing the smoke vent. I pointed out to the children that the lid was the shape of a pentagon. Thus the territorial parental pissing match had begun.
Next the students scooped out the insides. Most of the kids enjoyed it, facilitated by my Martha Stewart rubber-handled ice cream scoop and Grandpa Rayno's fish scaler. I was feeling so au courant, so in my element. After all, I was the only parent wearing a jack o'lantern T-shirt.
Now, anyone exposed to autism knows about sensory issues. Big red flags pop up at the thought of handling wet, cold, stringy, clingy pumpkin guts… so carving pumpkins is something my son has avoided his entire life. When his turn came, he gingerly put his hand into the pumpkin and slowly got used to the sensation. He was.. he was… almost LIKING IT!
Unfortunately the other mother volunteer grew impatient, and eyed the clock. She started making terse comments to my son about his lack of technique. When her words failed to achieve her desired response, she started badgering him. "C'mon, reach in there and put some muscle into it! The other kids need their chance, too. If you don't speed up, we'll all be late for lunch!"
My mommy hackles raised immediately. When the other mother walked away to the sink, I followed her. "Excuse me – did you know that my son is autistic?" I said, quelling my rising anger.
"No, I didn't," the other mom said, looking a bit befuddled.
"He has sensory issues. He hasn't done this before."
Her eyes widened. "You mean he's never carved a pumpkin before?" she asked in astonishment.
Swiftly I tried to think of the words that would summarize what living with autism is like. How you don't hand your ASD kid a sharp knife and an oversized gourd and say "go to it." How you try one thing at a time, and don't force it. All I managed was, "When you're dealing with autism, you don't live like other families."
I don't recall her response, but I quickly made my main point. "Go easy on him. Doing this is big for him."
We returned to the table and she ratcheted down her intensity. Heck, she even gently showed him how to better grip the tool. I felt grateful for her shift in attitude. But there was so much more to explain….
By that time my son's mounting distress from sensory overload finally reached that pivotal point when escape is essential. Now I felt grateful that the other mother was there to direct the activity – I had to leave for a while. My son washed and dried his hands, and we walked the comparatively quiet halls for a break. We went to the autism room, but another student was having OT there.
Next we walked through the empty media center. I loudly greeted the lone adult there. She moved her mouth like a fish. I could not hear her. I said something else. Again, she moved her mouth like a fish.
My vocal volume decreased. "Oh, this is the library. I'm supposed to talk softly."
"But no one is in here," my son noted.
"Yeah," I agreed, wondering whether the librarian mouthed words at home to her family, too. "I feel like I'm in the Twilight Zone."
With nowhere to go we returned to the noisy, chaotic classroom. Each child had drawn a jack o'lantern face and as a group they voted on which features they liked best. Each one took a turn drawing an eye, eyebrow, nose or mouth, then carved it. My son put on his noise-reducing earphones and sat at his desk for a few minutes until he left for his pre-lunch break in the autism room.
When every group had finished, the principal stepped in (dressed in a navy policeman's uniform) and listened as each group gave a presentation describing their pumpkin. The other mother and her little costumed child had gone.
When "my group" stood in front of the class, the other mother's son was asked why one of the eyebrows had become part of the eye below it. "My mom screwed it up," he told the whole class. Immediately the teacher rebutted, saying that in this class students take personal responsibility for their actions. This time my mommy hackles were raised for the absent other mother, whom I had seen advising the children as they drew but allowed them to learn by doing it themselves. And I realized that under different circumstances it could easily have been my child up there, bad-mouthing me when I wasn't around.
Then in a whirl the room was picked up, supplies cleaned and put away, and the children lined up to march off to the lunch room. As I drove home, I thought about my former life in an advertising agency and how one might neatly sum up all the differences and challenges and rearranged sources of joy we autism families experience. I thought of the Halloween candy my son can't eat, the movies he won't watch, the haunted houses he can't handle.
I gave up. All I could think of was the generality I'd said before… we don't live like other families.
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Nancy Hokkanen lives in Bloomington, Minnesota with her husband and 10-year-old son. She contributes to autism listservs and volunteers for Generation Rescue, A-CHAMP, and the Minnesota Natural Health Coalition.
"At the third house he walked right in the door when it opened, but that really didn't phase anyone"
Ben's Dad - thanks for the chuckle - the first year we took my son out for trick-or-treat he did the same thing - the door opened, he saw a piano inside the living room, and in he went (5 years old and adorable as the M&M - the people there thought it was a hoot - I had a tough time getting him to leave)
after that, every door we went to he stuck his head inside and look around (everybody must have a piano, no...?)
he got lots of treats which luckily he had no interest in eating (kinda made me happy and sad at the same time). Yeah, we live a different life for sure...
Randy
Posted by: Randy | November 05, 2008 at 04:13 PM
Also, is there anyone out there with a girl on the spectrum who is frustrated with how all the girl clothes these days always have lace and frills or decorative buttons around them? Natalie hates anything with any type of a frill or decoration at the end of the sleeve or at the neck; she whines and tugs at the collar and takes my hand and does a "take it off" motion. She also cannot stand jeans or stiff pants; she must have cotton leggings or loose flowing cotton pants. I buy most of her stuff at Old Navy because they are the best for just basic cotton girl clothes. It is frustrating that so many everyday girl clothes are frill-covered these days.
Posted by: Chris | November 04, 2008 at 01:28 AM
Halloween gets a little better, ie: more normal, for us every year.
My 8yo nonverbal son loves everything about it, the constumes(he was Stitch), the physical activity, being out and about at night. However, me making him say "trick or treat" and "thank you" he could do without. Most people just think we're odd with the prompting and wait time, but a precious few get it and show their compassion with extra candy or a word of encouragement to him. It usually brings tears to my eyes just to know that someone I don't know understands our situation.
My 6 yo son who has language but is more sensory and hates wearing costumes, actually made it down the block in his Mr. Incredible costume. I think he liked it, but was happy to get back home. Last year he wouldn't even touch his costume, let alone put it on, so, it's all good.
As always, thanks to the editors of this website and thanks to Nancy for the great piece and everyone else for good "conversation".
Posted by: Amber | November 03, 2008 at 11:30 PM
Nancy
This is great. Thank you for this.
Trick or treating used to be a nightmare because our Dan would want to go INSIDE everyone's house.
Due to sensory issues one year I dressed him as "Daddy." He wore my husband's shirt and I drew a beard on his face. He seemed to like it a lot. A costume without the overload. (My husband doesn't like to wear costumes either. One year for a party I dressed HIM as Andy Capp. Yes with just a cap!)
Posted by: Barbara Fischkin | November 03, 2008 at 05:46 PM
My son is a single parent with a 12 yr. old autistic son who has come a long way since his PDD-NOS diagnosis at the age of 2. Nancy's comment, "we don't live like other families" is so true. My son works 6 days a week, and fortunately, has a terrific day care provider who takes my grandson after school and on Sundays. She treats him like one of her own kids (she has 3 boys). She is fantastic with my grandson! This year was the first year my son has had the chance to take his son trick or treating. They had a wonderful time, and my grandson enjoyed dressing up like Darth Vader. For several years he did not know or understand what Halloween was all about. This year he really enjoyed himself. I was so thrilled wnen my son related to me the wonderful time they had on Halloween night. Thanks to all of you for sharing your stories, and I pray for the recovery of all our ASD children!
Posted by: Bev - a grandmother | November 03, 2008 at 09:56 AM
Unfortunately Natalie will not wear ANY costumes whatsoever. She hates the Disney princess stuff because of all the lace and hates the fluffy animal ones because they are once-piece and too heavy.
We didn't go around trick-or-treating this year since we have so many food restrictions; we handed candy out instead. My NT children wore their costumes to hand candy out and Natalie just wore her regular clothes since she hates costumes.
Posted by: Chris | November 03, 2008 at 02:03 AM
This year was the first year we went to the school "Fall Ball". Josh now gets it that we dress up and he gets limited GFCF candy.
So the excitement builds now, where before he was unaware.
When we got to the Fall Ball it was sensory chaos and full of things we couldn't eat.
I let Josh do the "cake walk" simply to participate with friends, then we had a snow cone which I asked to have only a bit of coloring added.
You are right Nancy we live on a totally different planet.
However, I force myself to go do things with regular folks, because someday this will be the world in which my son lives. Better to learn to cope now within Mom's radar.
Posted by: karenatlanta | November 02, 2008 at 11:29 PM
Ben vetoed a few parts of his knight costume – predictably the itchy over-shirt and the crown, but there was enough left that the he still looked the part. He has no interest in candy, but he had a huge smile walking to a few of our closest neighbors, and manged to get out a wave after leaving each. He even held his own bag in one hand while gripping Mom's hand with the other, and Mom had a smile to match. At the third house he walked right in the door when it opened, but that really didn't phase anyone. Once home he managed to shred his way out of the costume pants. I guess he was done, but the holiday was long enough to get a taste of it and snap a quick picture.
Congratulations on your sons' 'almost liking it' moment. That's a thrill that non-autistic families can't readily appreciate. I don't expect there to be an end to those 'by the way' encounters. Today Ben had buddy soccer, and almost liked it. He actually ran for the ball. The FIRST had more to do with running for ANYTHING, but on a field full of autistic children, their aides and parents, it was still a moment that only I would recognize as a milestone and a triumph. “By the way”, I told his mom, Ben ran for the ball today!
Posted by: Ben's Dad | November 02, 2008 at 08:10 PM
Thanks to all who've shared their stories and comments here. I hope more parents add their Halloween tales, too.
My son had his best Halloween ever, trick-or-treating as a Lego Bionicle, nomadically roaming the dark sububurban streets with three separate packs of kids.
Years ago when the first friend in our circle had a baby, she offered one cryptic generalization: "Boy, it sure changes your life." Later as a new mom I came to understand the overwhelming influx of information and emotions that defy specificity. And now, that whole other layer.
Posted by: nhokkanen | November 02, 2008 at 03:24 PM
Nancy,
Knowing your son makes this even more fun to read!!
Our halloween means sending our older son away to party with other families. No one even comes to our house except nieghbors who really know what they may expect when they knock on the door - a naked boy throwing who knows what out the door as it opens.
We are fortunate that Thomas does not desire candy. We can leave the bowl right out and he ignores it. I had to put a sheet across the picture window (normally just leave the drapes closed) so wandering eyes did not see Thomas' costume (I tell people he is "Adam" from Adam and Eve fame - without the fig leaf).
Keep the great "Reality Autism" stories coming.
Tim
Posted by: Tim Kasemodel | November 02, 2008 at 03:21 PM
Wonderful writing, Nancy! I felt like we were right there with you. Unfortunately, my Halloweens with Meg are pretty much the same each year, and this is our 13th since her regression into autism after her 18 month vaccines. She is nonverbal, has many sensory issues, and holidays are rarely fun for her. Candy is poison for her and I hate for her to see me giving it out as it is just so unfair. She instead had organic fruit snacks, lollipops, and ginger cookies (gluten, soy, and casein free--oh yeah, and no corn syrup ever!)
Her NT sister went out with her 8th grade peers to eat pizza, trick or treat and have a fun and scary time. Meg instead stayed home with me as I had to be creative getting the candy out the door each time the bell rang. She watched a Charlie Brown Halloween x25. I often wonder if she compares herself to Charlie Brown or Linus, who missed out on tricks or treats and so much more.
I write this so that any readers here who do not have a child with a severe autism diagnosis or to others who deny a need for medical treatments can fully grasp what so many of our children, so many of us, have to deal with. You are so correct to say we don't live like other families.
Posted by: Teresa | November 02, 2008 at 01:15 PM
Thank you for this wonderful story!
We went trick-or-treating -- our teenage son dressed as a skeleton, our younger daughter a cowgirl -- our older daughter is off at college now. Our son loves Halloween -- the sights and sounds, the mechanical spider climbing up a string... I had to drag him away after watching that spider climb up and down a few times -- on to some more houses with other sights and sounds to marvel at...
Posted by: Twyla | November 02, 2008 at 12:24 PM
We certainly do live differently!
My son actually put on his costume and ran out the door with my husband in excitement...these two mintues alone made my night! He then ran behind our house and bent over...yes, Optimus Prime pooped his pants before making it to the first house! We did a quick clean up...and he then went to about 10 houses...9 more than ever before! At each house he hit the right Go Talk button..."trick or treat"...and about half the time he remembered to hit "thank you"...as we were walking home, I was beaming...what a great night...huge success for our family...but I'm certain 'that mom' in your son's classroom would not have been impressed!
Savor the moments as they relate to your family...normal families are boring!!!
Posted by: Barbie Hines | November 02, 2008 at 11:57 AM
Ah, what to write, what to say... I think I'll steal Nancy's words:
"We don't live like other families."
We had our best Halloween haunt ever.. my son w/ ASD is 10.5 years old now, so I've been at the 'how to make Halloween fun for HIM' (and to hell with what everybody else thinks of our way of doing things) bit for a while now. This year was a success.. and next year will bring what next year brings...
(that's another thing families like ours have become good at: staying in the moment..)
Posted by: Petra | November 02, 2008 at 10:44 AM
Nancy,
Thank you for the story. The highlight of your day must have been the stroll around the school. You made me think of my visit to a local grade school to talk to someone about an upcoming presention on teaching social skills. As I waited in the office, a boy about 8 or 9 walked in tapping a stick on the floor, followed by a person I'm assuming was a teacher aide. The handsome little guy never spoke, just walked in a straight line back and forth in the room. Then he sat down with the aide next to him, still no sounds. Then he started rocking and humming. Suddenly, he was banging on the arm of the chair and making deep groaning noises. The aide made him get up and he was again calm. I watched him walk out, staring at the floor, tapping away.
I don't know anything about the boy, but I have my theories based on watching him for a few minutes.
What really amazed me was how everyone in the office took no notice pf this student.
No one looked up when he got upset. I can only imagine that this was routine. This boy spent his days pacing around the building followed by his aide.
Our schools have learned to accommodate these kids, no questions asked.
Anne Dachel
Media editor
Posted by: Anne Dachel | November 02, 2008 at 10:44 AM
nancy,
I loved this piece so thanks for sharing it with us. You really do write like a pro. I took Joshua trick or treating(he was a pirate) and when we got home we put away the treasure for the next day and thank heavens he has forgotten all about it.
maurine
Posted by: Maurine Meleck | November 02, 2008 at 08:54 AM
We too had the best Halloween experience so far! My son is a year into chelation, 3 years into biomedical and he happily got dressed up and couldn't wait to hit the streets. We met up with a group and he fit right in. It was great! He had energy to walk about mile (we never made it past a few houses in our cul de sac). Thanks to the Hannah Poling case, he's now being treated with supplements for mito and now has energy. A far cry from last year. One kind man even gave him a bottle of water as when he gets thirsty he can't get past it. I wanted to stop at his house to thank him the next day because had he not given him a bottle of water, it may have ended our evening.
When I look back over the past 3 years, I'm just amazed at how far he's come! Thanks to all the kids recovering before him ... we continue to complete our puzzle.
Posted by: Kathy | November 02, 2008 at 08:37 AM
I remember our first trick-or-treat experience...we had to prompt him every time to say, "trick-or-treat" and then, "thank you" and endure the strange looks from those giving out the candy. My son seems to do better if they put the candy into his bag--it is when they just hold out the bowl that we run into a little trouble. It seemed like each Halloween there was always some issues that would occur. Like if the people giving out the candy happened to have any dogs--my son is scared of dogs. I remember one year, a teenager was in charge of giving out candy and he said to me, "what's the matter with him?" Then there was the time that his father was in charge of walking him up to the next house, while I took a break, when I heard a familiar blood curdling scream, and then some yelling. Like a mother bear, I charged up the stairs, shoving his father aside (who was doing nothing) and rescued my child from the two harpies who lived there, not knowing what had happened, and I said, "he's autistic, you know?" And one of the harpies said to me, "well, you could have told us" and I said, "what do you want me to do, put a sign around his neck?" Ah, good times. But, then there was the time that a young woman in a Hula skirt and bra top answered the door and held out the bowl of candy. My son reached out, on past the bowl of candy, to poke his index finger into one of her bra cups. She was very understanding. My son is 11 years old now, and this year was our 5th trick-or-treat experience. This Halloween was probably the easiest one so far. He didn't climb up me, screaming, when we ran into homes with dogs, and we didn't have to prompt him on what to say. And I didn't mutter one, "he's autistic" all evening.
Posted by: MacGoddess | November 02, 2008 at 08:08 AM
It is funny. I was feeling out of sorts. Thank you for the recap of the Halloween that is ours. I know my wife misses the whole thing. This is another one of those topics men have no clue about what their wifes go through and how to talk about it. One trick or treater came to the door, Tanner stood on the couch, and just starred at her. I wonder what he was thinking. It is not everyday that Darth Vader, Elmo, and a jeanie come to the door and demand candy.
Posted by: Tanners Dad | November 02, 2008 at 06:37 AM