Conor's Autistic Disorder Reality - School on Wednesday

On Wednesday Conor expects to be in school. 

He loves school, which for the past 3 years has been Nashwaaksis  Middle School,  and it has been a good experience for him. Yesterday we had to bring him home early because he wasn't feeling well. Today, Wednesday, he has to stay home again but he doesn't like it.

Conor expects to be in school and not being in school today, Wednesday, bothers him ... a lot.  He is screaming some, crying some, and repeating over and over again "School on Wednesday, School on Wednesday, School on Wednesday". Some times he starts with Monday stopping at Wednesday:  "School on Monday, School on Tuesday  ....  School on Wednesday".

Autism, Conor, Schedules and Haircuts

The summer months, with no school, and with much less structure and routine, are difficult at times for Conor. We do try, as much as possible, to keep structure and build activities into each day for him. Lately we have been putting a schedule on a kitchen wall which Conor reads and makes a mark as activities are completed or are about to be undertaken. This appears to help Conor keep from getting anxious as he sometimes does when structure and routine are not as consistent as during the school year.

We also used the schedule to help prepare Conor for a badly needed haircut as you can see in the middle "before haircut" picture below. The after haircut picture follows. The shop where he gets his haircut now is located in a mini mall anchored by a Price Chopper store so we described it as Price Chopper haircut to let Conor know where he was going. (Conor did really well, sitting quietly throughout his haircut, although we don't attribute that solely to the schedule by any means. He has come along way with remaining calm during haircuts over the past few years). We don't try to put too much detail into the schedule leaving the spaces between listed activities open to adjust to his preferences and our ability to facilitate activities. The schedule seems to be helping.

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The Grey Summer Gives Conor A Break

It has been a grey summer with unrelenting cloud and rain.

Today started with more of the same and Conor relaxed with Dad's laptop and headphones. But the clouds let up a bit with the sun and blue sky breaking through at times. Conor was a bit reluctant to head out for a trail walk being out of the routine. With the steady bad weather there have been few good opportunities for outings. I was able to coax Conor back out on the trail though and he enjoyed the walk.

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The Joy of Conor and the 7:10 Sun

Although I do not find joy in the fact that my son has Autistic Disorder I do find great joy in him every day. Daily routines often provide the context for that joy.

This morning as he does each day Conor got up at 7:10. I was already up and Conor, with no alarm clock going off in his room, awoke at exactly 7:10, as he often does, to show Dad the 7:10 sun.

The routine actually starts each evening when Conor is tucked in at night. We exchange some Good Nights and I Love You's. And Conor says "7:10 sun". I respond with "yes, see you at 7:10 sun". Then he gets up as he did today, to show Mom and Dad the 7:10 sun. We pull the curtains back on the living room window and view the 7:10 sun with Conor.

Ending Conor's day by tucking him in, looking forward to the 7:10 sun, and then starting the next day with him at 7:10 sun is a warm routine that brings great joy in our house.

The Joy of Conor and the 7:10 sun.

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Conor and Dad Have An Unexpected Day At Home

Roads were icy around Fredericton today and the aide who works with Conor, and several others, were unable to get to school so Conor came home with Dad who worked out of the house for the day. After lunch we enjoyed a nice walk on the trail.

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Conor and the Clock

I mentioned in an earlier post, Conor's Sense of Humor - Eight Zero Zero and Zero Kisses, that Conor now is used to going to bed at eight pm or eight zero zero as he likes to say. He pulls up a chair, sits and watches the clock inch toward 8:00 every night. In this picture it is approximately 7:47 and Conor is focused intently on the clock. It is important to keep him busy between 6 and 7:45 to make sure he does not sit there for two hours waiting.

Tonight we went for an after supper walk. The rain had stopped and Conor and Dad headed out. Conor decided he wanted a "bridge walk" a hefty walk of about two hours at a brisk pace. We made it about 40 minutes when the rain started again so we ducked into a Jean Coutu pharmacy and called a taxi to get home. Conor had a heavy chest cold this weekend and I did not want him getting soaked.

While in the pharmacy waiting for the taxi, Conor managed to convince Dad of the need for a "Conor treat", in this case a Coffee Crisp chocolate bar. The taxi arrived shortly afterwards and we headed home where Conor, after some home diversions, took up his place at the clock to wait for bed time - eight zero zero.

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Autism When The Bus Doesn't Show Up

In Still no bus for autistic boy the Hamilton Spectator tells the story of Joey Van Dyk a 13 year old autistic boy with a kindergarten functioning level who has been left stranded for the first five days of school this year when his bus didn't show up. Joey usually takes a bus to a school for special needs students. Joey's dad has had to leave work, which begins early each day, in order to get Joey to school. Joey's mom says that the disruption of routine is difficult for Joey:

"It was particularly upsetting for Joey, who Van Dyk estimates functions at the age of a kindergarten student. Routine, she stresses, is extremely important to him, adding that his educators had a hard time calming him down last week. "The more things I can keep routine for him, the better," she said."

Most parents of autistic children understand exactly what Joey's mom means when she stresses the importance of routine. Hopefully Joey's school district officials acquire the same understanding.

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Autism Disorder Deficits - Resistance to Change

While hundreds of thousands of parents in the real world seek treatment for their autistic children, mortgaging their homes, taking on second jobs, fighting and struggling with service providers, there are many internet commentators, including some parents, who do not view autism as a disorder. Adherents to this ideology view autism as just a reflection of different personalities or neurological diversities.

According to this view, called neurodiversity by some, autism is groovy. Just breathe easy they say, relax, find the joy in your child's autism and with time things will improve. Your child doesn't talk or communicate in any way? Don't worry. If you just let up, stop abusing your child with ABA, and say nice things about autism your child will spontaneously recover some day, if you just let it happen. Let it be man, let it be.

Most parents, struggling to help their children, and dealing with the realities of living with, loving, and caring for autistic children know better. They know that autism is a serious disorder which impairs the life prospects of their children, a disorder which manifests itself in serious deficits. One of those deficits can be an extreme resistance to change. In Resistant to Change the Chicago Sun-Times tells the story of Matthew Buck and his family and how Matthew's autism, and his extreme insistence on routine affects their lives, from their daily lives to Matthew's inability to attend uncle's wedding reception because it would have been too upsetting to interrupt his daily routine.

Resistant to Change also highlights a study being done at the University of Illinois at Chicago, which recently won a $9.6 million federal grant to study causes and possible treatments of insistence on sameness.

UIC researchers will study genetics, brain chemistry, brain functions, etc., that might explain insistence on sameness.

...

Insistence on sameness is a classic sign of autism. A child might, for example, line up his toys in an unchanging order, or want to always take the same route home.

About 20 percent of autistics have extreme forms of the behavior. Interrupting their routines can trigger temper tantrums, hitting and biting. It's one of the most "troublesome and debilitating" characteristics of autism, said Dr. Edwin Cook, director of the UIC Autism Center of Excellence. And it's one of the main reasons some autistics must be institutionalized, he said.