Posts Tagged ‘Parenting’

One more step in the long run

February 25, 2018


Many thanks to Regan Foster of The Pueblo Chieftain for so thoughtfully and skillfully presenting our ongoing struggle in trying to get Harrison some behavioral help. It is truly the story of a healthcare and mental-health system that is entirely broken and does not serve those in need.

Regan’s story will be Exhibit A for our appointment with an administrative law judge on March 21 to appeal a decision by the state to deny Harrison a Children’s Extended Services (CES) waiver for Medicaid. He was denied basically because his sleep habits, though not great, are not entirely horrible. Even if our appeal is upheld, the victory would be meaningless, as CES will not cover behavioral services beyond June.

Meanwhile, our insurance company, Cigna, after first denying that they cover ABA therapy in 2017 (and also erroneously denying we ever called), has changed its policy as of Jan. 1. Now they do “cover” behavioral therapy — with a $3,000 deductible and a 30 percent co-pay — which is the same as not having insurance at all except that we’re paying for this privilege.

As a side note it’s difficult for me to hear myself saying “But he’s never hurt anybody” when I know he left me with a nearly paralyzed arm and shoulder for about two months in 2013-14, and has nearly knocked me out with head-butts. I also have seen the bruises of others who love him, including Mary, and his teachers and aides, so I must have intended something else when I said that. Maybe he’s never “intentionally” hurt anybody would be more accurate.

Most of you know I’ve been writing extensively about this topic of autism parenting for years in my columns, blog, books and on Facebook, but it was fun to hand this ball off to Regan and see someone else’s perspective. GO READ it here.

Graduation day

May 17, 2009
Harrison and his friend Mara on the class field trip the day before graduation from Custer County Preschool. Photo by Monica Backsen.

Harrison and his friend Mara on the class field trip the day before graduation from Custer County Preschool. Photo by Karen Gorley.

This is a sad tale. But I managed to live through it so I’m sure you, dear reader, can endure this little glimpse of the beast we call autism, and how it affects not only children, but also their parents, educators and, really, all those around them. Like an entire class of preschool kids and their families, for example.

The other day was the “graduation” ceremony at my son’s preschool. The kids rehearsed a couple of days before the event and made little graduation mortarboard hats as a craft activity.

Early in the ceremony I could already see that Harrison was having a difficult time sitting still. But Karen, the paraprofessional assigned to him, was managing to keep him in his seat. When the other children sang a song, he sang along with them — and without them — and also broke into other songs altogether.

Then the children filed out for the procession. As they shuffled back to their seats with their hats, it was clear that Harrison had somehow broken the mortarboard part away from the band and Karen was trying to put it back together.

I was still hopeful and turned on my camera for the big moment. Certainly Karen would have to accompany him to the podium to get his “diploma” but I was ready to get the momentous photo. But Harrison began to get more unruly and loud. We laughed nervously but it made us uncomfortable. I wondered how many of the other parents were even more uncomfortable than we were.

Finally he slipped away from Karen and headed for the audience looking for his mom. Mary held him for a while but his outbursts became more disruptive and so she finally carried him outside.

I sat. I didn’t want to cause more disruption, and I was hoping that perhaps Mary would at some point bring him back inside.

I learned early in life that when your last name begins with “W” you always get to bring up the rear of things, and of course his name was the last to be called. The teachers looked around the room and then at me. The other parents were silent. All I wanted to do was take a picture, like the other parents did, of my kid getting his preschool diploma. But now I had to speak out to a quiet room full of people.

“He was being disruptive so she took him” was the only thing that came to mind. I turned my camera off and sat quietly as the ceremony ended.

Meanwhile, outside, there was a very upset little boy who really didn’t understand why he had been removed from the ceremony, and an upset mom trying to come to terms with why her child sometimes behaves like this.

The day-to-day challenges posed by autism are invisible to most people. In fact, often when I mention to people that my son has autism I get a blank stare, or the question, “What exactly does that mean?”

As ridiculous as it sounds, that’s actually a really great question.

What it means is that often things don’t turn out like you think they will. It means that you learn to live with that fact. And it means that you move on and hope for a better day.

Diploma or no, he’s off to kindergarten.