Autism and the Healthcare Profession – Some get it and some don’t.

A holiday experience reminds us that when it comes to helping individuals on the spectrum, some health professionals get it and some don’t.

On December 30th, my son suffered the first seizure of his life. Three hours later, he suffered his second. After two days and a battery of tests at Sacred Heart Hospital, it was determined that his seizures could probably be handled by proper levels of medication without any lasting trauma. (Very good news, considering the litany of scenarios that ran through my mind when I first saw the street in front of his house jammed with aid vehicles and EMT’s). But that horrifying, hectic, fatiguing 48 hours reminded me and my wife once again of something we learned early on in our nearly two decade journey with our son through the world of ASD – when it comes to caring for individuals with autism, it’s clear who gets it and who doesn’t.

The following is a chronological step-by-step listing of individuals (caretakers, first responders, nurses, doctors and techs) and how they handled their encounters with my son on December 30th and 31st. Each is followed by their grade [get it/don’t get it]. If it helps, think of this as pass/epic fail.

His staff during both seizures – calm, effective, empathetic – get it.

EMT’s in home – overwhelming, far too concerned with procedure – don’t get it.

EMT’s in transport – Caring, helpful, able to adapt to my son’s needs – get it.

Emergency Room, adult side – Doctors and nurses, confident, competent, helpful. – get it.

Emergency Room, pediatric side – not helpful, annoyed (many sighs, frowns and rolls of eyes), couldn’t stop staring, blamed the system for delays and setbacks, worst experience of the entire two days – don’t get it.

Eighth floor nurses – helpful, underestimated his behaviors but quickly learned to value our assessments – get it.

In-hospital transport – careful, fun, attendant – get it.

MRI nurses – helpful, listened to our advice on his behaviors when waking up from sedation – get it.

Dr.Hasan – quick, direct, caring – gets it.

Hospital Doctor doing rounds attempted to interrupt EEG procedure (even after being asked by one of the techs to wait a moment), reacted childishly to being told her paperwork would have to wait. – doesn’t get it.

My son’s doctor – got him admitted quickly during a code red – always gets it.

I really didn’t want to start my new blogging year with a negative post, but hopefully, those who don’t get it will learn from my words or, at the least, re-visit the reasons why they joined their profession in the first place. And for those of you who do get it, words can not express our gratitude. Thank you.

 

Our Morning Routine – Code Name Cat Ballou

Why getting my son on the school bus is like preparing Kid Shelleen.

My fifteen year old autistic son likes his routines. He relies on them. The one that has evolved during his nearly twelve years of exposure to the public education system is lengthy. During a recent execution of this morning ritual, it struck me that our dance quite resembled the preparation of Kid Shelleen in the famous 1965 western, Cat Ballou. All that was missing was the matador music.

See the original Cat Ballou trailer here.

If you haven’t seen the movie … What?? You haven’t seen the movie? Well, you should. It’s a raucous romp through the old west  with an eclectic cast which includes Lee Marvin (Oscar for Best Actor), Jane Fonda and Nat King Cole. Those of you that have seen the flick will remember the scene in which Kid Shelleen, the washed-up, drunkard gunslinger, is resurrected by his attendees through a process of long baths, hot towels and clean clothes. Although my son doesn’t drink, he is quite groggy in the dark, early, first minutes of a school day.

It starts with the alarm. Then I run a bath. While he is bathing he receives his meds and vitamins. He gets out and dries off without help, but I must unplug the bathtub and pull the shower curtain closed. Sometimes  he also insists I dry his neck and shoulders. I always am the one that hangs up the towel. He can dress himself, but I must buckle his belt and tie his shoes. His shoes must be double-tied. We do this once on his right shoe and three or four times on his left. Then comes his teeth, his chapstick and his hair.

Ahhhhhhh. His hair.

It must be sprayed with water, brushed then wetted down by hand. Next, I draw a brush stroke across his forehead and five down the back of his scalp. They must be counted out in cadence, 1-2-3-4-5. Then he runs his hand through his bangs and we start all over again. At some point the coif meets with his approval and we move on. On good days this can mean as little as two or three repetitions. On bad days, it never ends. When this occurs, I must move him along, at the risk of a meltdown, promising to revisit his hair after we have completed our other tasks.

Next comes his coat, backpack and checklist. We check off all the steps we have completed and one we have yet to complete, going out and waiting for the bus. But first comes my routine. My coat must be zipped all the way to the top, my hat and glasses put on. Then every door that is open must be closed. Even some that are already closed must be opened and then closed again while he supervises. At last we are free to go outside. We wait at the end of the driveway until his ride arrives. When he gets on the bus, he always stops on the first step, gives me a peck followed by four quick pseudo cheek kisses. To the neighbors, we must look like a couple of old Frenchmen meeting on the streets of  Paris.

Then comes the hardest task of all, watching as the bus pulls away and out of sight … hoping I have entrusted him to people with the care of a father and the humor of Cat Ballou.

Taste of Hope – Taste of Humanity

Friday, February 12th, I was lucky enough to bring my family to the Taste of Hope fundraiser auction for the  Isaac Foundation. The charity provides grants and financial support to families of children with autism. Their mission statement reflects their dedication to this cause; to provide economic assistance for intervention services and therapies to children diagnosed with autism spectrum disorders.

The Isaac foundation was created shortly after the Lytles lost their son, Isaac, to a heart defect (a condition unrelated to his developmental disability) in 2007. At 18 months old, Isaac was diagnosed with autism. He had made great progress due to early intervention when he suddenly passed away.

The Isaac foundation raises funds through various avenues, including the Incredible Race for Autism, the Faces of Hope Calendar and the Taste of Hope auction. Friday’s event featured a silent auction and a live auction. Donated items included ice cream, wine, hockey tickets, furniture, a Gonzaga signature basketball and a very cute puppy named Hope.

A popular item.

 The crowd was an eclectic mix of parents and children, doctors and therapists, advocates and professionals, but they all had one trait in common, generosity. The auction raised thousands for the foundation’s cause while providing an entertaining, meaningful evening for all who attended.

To learn more about the Isaac Foundation go to www.theisaacfoundation.org.

God Must Have Changed His Mind About New Orleans

When Hurricane Katrina slammed into the Gulf Coast in August 2005, it took the lives of 1833  human beings. Later, Texas televangilist Pastor John Hagee commented that he thought the devestation was punishment for the sins of New Orleans. In an interview on NPR in September of 2006 Hagee commented that he felt the storm was  “God’s retribution for a planned gay pride parade.”  

Well, it appears God has changed his mind about New Orleans. Anybody who witnessed TracyPorter’s 74 yard pick-six in Superbowl XLIV would say it was truly divine. He crushed any hope of a Colts comeback and sealed the victory for the Saints. It was nothing short of a miracle, unless of course you were rooting for Indy.  

The ultimate replay booth.

 

Which presents the question, how does God decide who to root for in war, peace … football games? Or, on a subject more relevant to my own life, how does He choose which children will be autistic.  

Most of us raising an autistic child wonder,  what did our little baby do to deserve the lifetime full of challenges the disorder presents. No one has been able to answer that question for me. But I haven’t stopped asking.  

Some parents lose their belief in God because of this question. But I lean the other way. The words of the keynote speaker at the first autism convention I ever attended still resonate with me. When asked why God allows autism, she said she had no answer, but she did have a hope. Her hope was that we wouldn’t allow the disorder, which already steals so much from us, to steal our faith too. That has always stayed with me.  

I wonder how many people lost their faith after Katrina and how many had their faith restored after the Super Bowl. I don’t think God picks sides in football games, nor does he punish people with megastorms for issuing parade licenses. But I think he allows us, as individuals, to discover our own beliefs, our own truths, and so, His lessons are as varied as we are.