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Deflated

Deflated ballBy Kim Stagliano

Deep sigh.  Ever have a day where you just plain feel tired? It's not just physical fatigue, it's a bone deep exhaustion that sneaks up on me.  And my husband. And fellow autism parents. Yesterday was one of those days. Here's why.

My girls are now in middle school and high school. Our elementary days are behind us, for which I am grateful. No more red dye soaked school parties for starters. And the girls are on the same bus schedule, a small but important bit of continuity for my day. By 7:20am I am seated quietly at my desk working with my twelfth cup of coffee in hand. It's good.

Back to yesterday. Each year, a top rated prep school in our area hosts a wonderful basketball tournament for Special Olympics. Local middle and high schools field teams from the adaptive PE classes. A sports writer celeb is the MC and the entire prep school seems to turn out with smiles and manners and exuberance to volunteer and to cheer on the players.  Many of the players march into the gym like gladiators, albeit really happy warriors, faces beaming at the attention, eating up the cheers and whoops like a big bowl of ice cream.  They high five and thumbs up and you can't help but grin from ear to ear as you watch them. It's the true meaning of Special Olympics sports.  By all typical measurements, the event is a success. Except....

If you landed on earth in 2013 from a planet that had never heard of autism, you would have been able to point your long, green finger at a group of players  who stood differently, who participated differently, if at all.    Their faces were beautiful. Their bodies lithe and intact - no wheelchairs, no signs of disability even from the top of the bleachers. But you'd know.  These are the players with autism. And the event simply isn't designed to accommodate their special-squared needs. 

The teams waited for 30 minutes in the stairwell before entering the gym for the dramatic and emotional entrance ceremony.   For some of the kids with autism, this induced tremendous stress. And behaviors.   All I could think of was Temple Grandin talking about cattle chutes.

The National Anthem was so loud Roseann Barr would have clapped her hands over her ears.  More stress.



The games each used the buzzers on the countdown clocks. A jarring noise at the best of times. One darling girl (whom I happen to love)  spent the entire game staring at the clock.... waiting.

There weren't enough staff members to assist the children - one on one para at school means one on one para elsewhere right? Especially a jam packed gym loaded with strangers and loud noises.  Nope.

We parents have mentioned these autism triggers every year to the powers that be.  Every year the triggers are back in full force. This year the ear splitting National Anthem was a new touch.

I spoke with friends who are also autism parents who lamented, "No matter where we go, even sporting events for special needs, he sits on the sidelines because no one knows how to work with him. It's not right!"

We are soon to entering the Silly Season of the Blue Light: Acceptance! Awareness! But what have we accomplished when even a Special Olympics event is a slog for autism families - despite best intentions and whole lot of hard work?

CoverKim Stagliano is Managing Editor of Age of Autism. Her novel,  House of Cards; A All I Can Handle 50 pixel Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

 

 

Comments

Linda barbour

My son is in the special Olympics in Northern Ireland . He was hurt physically ref sun burn s and blisters and had no sock . Another day at this 4 day event , had a soaking nappy instead of pants . He has same tracksuit a smelling of pee fir 4 days . He then was made fun of when parent obtain pants at shop they bought extra underwear and made a flag saying nikki's big knicker team . Parent then drew over my sons well wishing message I put up and signed it after cloud and rain was put on it . No food with medication . No breakfast one morning . Abuse verbally from volunteer coach . Shouting and bouncing folder off the ground when my son was left in a medical tent n soaking nappy . Now the club seem to be talking and whispering about my sons IQ change . He's been in the club 5years and yes his IQ has increased . He has a full time assistant and has diagnosis of ASD . I've photos and proof and other coaches support . What do you think I should do about this disgraceful behaviour . Linda Barbour from Northern Ireland

Shiny Happy Person

"Ever have a day where you just plain feel tired? It's not just physical fatigue, it's a bone deep exhaustion..."

Sometimes it almost seems difficult to recall not having a day like that...

Jan Randall

This is SO disheartening Kim. It doesn't sound any different than when I was fighting with the Special Olympics when Andrew was 8 (he 27 now). I have some hair raising stories from those years, and after less than two years of him being on the swim and bowling teams I literally threw in the towel.
In our area, the special Olympics team is so exclusive they take only the best of the best as they compete year at the national games and often send people to the world games. They don't seem to want anyone who has any type of real challenges. I'd be shocked if anyone with Autism is on any of their teams. You would think they would have gotten with the program by now!
It's disgusting and disheartening.

Aussie Dad

If I hear the name Temple Grandin again I will f@&ken scream. Wish my boy could could take a few minutes out from sh1tting on the carpet to design a cattle chute.

mlinn

Thanks for posting this, Kim. I have avoided special olympics and other "special needs" recreation programs in our city for my boys for the same reasons. There is another huge factor for me: I know these activities would not be enjoyable to my kids. Sure, I could have had them suffer through it, but for what and for who? Many people have tried to convince me over the years that these types of activities would be "good" for the boys and would somehow magically teach them patience and appropriate behaviors. I asked one of my friends who had her daughter participate in Special Olympics swimming how long they had to wait before entering the pool and she said the instructor usually talked for 20 minutes! Yeah, right. We go hiking, snow shoeing, swimming, and kayaking as a family. We might not be "included" in the community, but we have fun and I know the boys enjoy themselves, and after all these years I've learned that's what really matters.

Jennifer Flinton

This column reminds me of exactly how I felt when I submitted the column to A of A last summer about almost the exact same thing - how our kids are excluded from even supposed "special needs" activities. My conclusion is that in many of these cases, what they really mean by "special needs" are smiling, grateful children in wheelchairs. Not our kids with their hands clapped over their ears and a look of anguish on their faces. Special Olympics here comes right out and says that most of the events require a lot of waiting / patience and advise not to bring your child if they can't manage that. They also tell you up front that they have minimal volunteers, and to be prepared to attend to your own child.

I have had many invitations to try bringing my son to events where I could possibly manhandle him through an activity, but quite frankly, I am too exhausted for that.

anxiouslyawaitingacure

Personally I feel that there is a great lack of awareness among so-called experts about how bad our kids' sensory problems are. For many, the air, the sun, and their own bodies can be unbearable, let alone noisy places with bright lights or worse, waiting in noisy places with bright lights. It's not just about bad behaviour or parents who don't use reinforcements well enough and our kids are trying their best. Sensory stuff is hardly mentioned in official autism definitions and yet it is at the core for many kids and often the underlying cause of many of their deficits. It's so hard to deal with sensory problems. I wish there was a cure that worked for all the kids.

Veronica Grant

I wish there was a like button because Anne Dachel took the words right out of my mouth. Thanks Kim for the article I know exactly how you feel.

AussieMum

...............The National Anthem was so loud Roseann Barr would have clapped her hands over her ears. More stress......

"Gotta love those 'Sensory Processing Issues'!"

My son cannot cope walking into some shops, with their loud music, bright lights and some shops are too hot and unbearable.

These "so-called" Autism experts are so wanting to normalise Autism. Next they will be blaming mums for our children's differences. Does that remind you of something that occurred 70 years ago. "Refrigerated Mothers"

Elizabeth Gillespie

Carolyn kylesmom

We need our own march of dimes to fund support for those hurt by the March of Crimes

Dana

In my area, the Special Olympics opportunities vary widely for kids on the spectrum. A lot of it depends on parent volunteers. If you get some parents of kids with autism as coaches, then chances are good they will modify the activity so that all can participate. That's what they do with basketball here. They divide the kids up into different groups based on functioning, ability, etc. And each kid has a trained buddy. Unfortunately, like most of us, I can't commit to being a parent volunteer because I am a primary caregiver to two boys with autism. So I have to rely on others who are able and bring my kids to those activities only. There is no chance of participating in gymnastics here because you have to be able to sit, wait patiently, and listen carefully to verbal instructions, take turns, etc. etc. All great skills that I want my kids to learn but "learning" doesn't mean that dropping to the ground and tantrumming or running to the other side of the gym if they hear a noise is tolerated. We have a great adapted swimming program that is not Special Olympics affiliated as well as TOPs programs. It should be as easy as signing up for Special Olympics, but unfortunately for our families, it is not.

Vicki Hill

Special Olympics has changed its definition as to who is eligible over the past 10 - 15 years. When my son started in Special Olympics, he met the criteria, even though his IQ is normal. He wouldn't meet their current criteria, though. It is clear that the criteria has been changed to keep their focus on strictly those with low IQ.

So our kids are not eligible for Paralympics, and those with an IQ of above 75 are not eligible for Special Olympics. Anyone feeling left out in the cold?

Mary Brown

Our district does the Special Olympics event as a track and field meet, which really helps with the issues you raise. HOWEVER, I went to a meeting for the local swimming program of the Special Olympics -- the real one, not the schools program -- and she emphasized all the things that would get our kids eliminated from a race (like touching the ropes that divide the lanes). I came away horribly depressed, thinking -- my God, my kid can't even participate in SPECIAL OLYMPICS, even though he swims successfully on a special needs team?? They really need to figure out how to include athletes with autism, it's almost ridiculous that we have to point this out.

Anne Dachel


Thank you, Kim. This type of thing is more of the pretense that autistic kids are nothing new. Expecting these children to fit in the mold for disabled kids is part of the autism cover-up. "Accepting autism" really means doing nothing about a nightmare overwhelming America. We will pay a heavy price for this blatant neglect.

Anne Dachel, Media

Special Olympics=not useful to autism kids

Special Olympics is a farce for kids on the spectrum. They only seem to cater to the smiling, personable Down Syndrome child or the heart wrenching child in the wheelchair. They are as clueless to autism as Autism Speaks.

Bob Buckley

Don't forget, there is no category for autism in the Paralympic.

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