Wednesday, March 21, 2012

Highway To The Danger Zone

President Franklin Roosevelt had a famous line in his 1933 inaugural address: “The only thing we have to fear is fear itself.” Of course he was talking about the uncertainty of a depression riddled nation, but that uncertainty of the unknown is what fuels fear in most of us. For a child with Autism fear is usually either nonexistent or badly distorted.

When I walk to the edge of a cliff or climb on the top of the roof, like I recently did to put the Christmas lights on, I get an instant case of vertigo. I have to get a hold of my senses to help keep myself from swaying and falling off the side. Everyone seems to have some phobia that they are concerned with; spiders, snakes, dogs, storms, needles, flying, or germs are common.

However, for someone like Konner this is lacking in many cases. Spiders, snakes and dogs do nothing to bother him. If anything he is more intrigued with these things. They seem to fascinate him and draw him closer.

This is not limited to just Konner. Ellen Notbohm wrote in a column on Parent Guide News’ website: “[Autistic] children may lack a sense of danger. This is the child who runs into the street without looking, jumps from the top of the play structure. Constant supervision and clear visual boundaries are necessary (one Mom painted a stop sign at the end of the driveway). Instructions must be phrased in the positive rather than negative: “Wait on the sidewalk” rather than “Don’t run into the street.” Some ASD children will hear only the last verb in the sentence and nothing before it, so your direction “Don’t run!” becomes “Run!””

This is also brought up in the book “Not My Boy!” by Rodney Peete. He talks about an instance when they lived near a busy street and his son R.J. ran into the road even after his mother, Holly Robinson Peete, warned him several times not to. In the end the Peete family had to put up visual boundaries to make sure that R.J. didn’t run into the busy traffic-way.

Add to this lack of danger a very curious group of children and you will have some very scary situations. For instance, Konner is not only unaware of danger, but is an escape artist as well. He can open locks, gates, and doors that most children can’t or won’t even think about.

Last summer we had bungee cords wrapped around the gates in the front yard. These were the industrial strength pulled so tight that I had a hard time getting them loose. Somehow, I looked up and Konner had made his way out of the yard and into the road. Fortunately we don’t live on an extremely busy road, and we were watching closely, but it could have been a very dangerous situation. We have also installed extra locks on our doors to keep him from slipping out.

The Interactive Autism Network recently held a study that shows how dangerous this is for children on the spectrum, and how scary and frustrating it can be for parents.

The following comes from that study via the Psychology Today website.

“Approximately half of 800 parents who completed the survey reported that their child leaves safe places, with the behavior peaking at age four. Among these families, nearly half say that their child has gone missing long enough to cause significant concern about safety.”

I usually hesitate to tell the following story in fear that I will seem like a bad parent. However, after reading this information I hope that it will help parents understand that they are not alone in these situations.

When we visited my grandparent’s house in September for a family reunion we were sitting around talking to my family when we realized something was wrong. There were eight adults, two teens and three children in the small two-bedroom apartment, besides Konner. I suddenly realized that I hadn’t seen Konner in a minute or two. The search was on. We began in the apartment because nobody had heard or seen the doors open. There are only two ways in and out of the apartment, and they both were within fifteen feet of where I was sitting. He was nowhere in the small residence. So we moved to the outside. My grandparents live on the ground floor of the three-floor building. My grandpa finally found him on the top floor. He was saying that he had tried all the doors, but that they were locked. This was one of the scariest things that has ever happened to me. The amazing thing was that nobody had realized he was gone. He wasn’t gone long, but long enough.

The study confirms that we are not alone in our experience. Here are some highlights of the study:

Risk of trauma, injury, or death:
• More than one third of children who wander are never or rarely able to communicate their name, address, or phone number verbally or by writing/typing.
• Two in three parents report their missing child has had a "close call" with a traffic injury.
• 32 percent of parents report a "close call" with a possible drowning.”

“Effect of wandering on families:
• Wandering was ranked among the most stressful ASD behaviors by 58 percent of the parents who reported the behavior in their children.
• 62 percent of families of children who wander were prevented from attending/enjoying activities outside the home because of
fear of wandering.
• 40 percent of parents had suffered
sleep disruption due to fear of wandering.
• Children with ASD are eight times more likely to wander between the ages of 7 and 10 than their typically developing siblings.”

Motivations for wandering:

Parents believe that the top five reasons for wandering are

·         Enjoys exploring (54 percent)

·         Heads for a favorite place (36 percent)

·         Escapes demands/anxieties (33 percent)

·         Pursues special topic (31 percent)

·         Escapes sensory discomfort (27 percent)

I know of one local autistic child who loves water and ponds. When she slips out of the house that is the first place she heads to. This is a scary thought, and everyone around the house knows that if she leaves to catch her before she gets to the water.

For this reason many organizations have started training service dogs for autistic children. Autism service dogs, much like seeing-eye-dogs, will help prevent these children from dangerous situations.

Parents with children who are on the spectrum tend to be more aware of their surroundings. They check on their children more often than most. They watch for things that their children may be fascinated with, and try to avoid dangerous situations. It can be frustrating and scary, but it is more common than not.

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