The Death of James Delorey, Child with Autism - Autism Awareness

The Death of James Delorey, Child with Autism

I have chills as I write this blog post because it draws attention to a much bigger problem that so many families face – the child who bolts. Our children on the spectrum are not always aware of the dangers around them and may run to things that interest them. This could be a reflection of light in a puddle, a moving object, or some other interesting detail that we may not even notice. There have been times when my son Marc has wandered away from me to seek out a ceiling fan in a supermarket. They are often located in the back store rooms where the public does not have access.

Parenting a bolter affects a family’s quality of life. You can’t take your eyes off a child who will run away. I had a friend who lived on a farm and had a child with autism who bolted. He used to run out the back door and would head out into the fields at lightening speed. The family eventually got a service dog. These dogs are specially trained by organizations like National Service Dogs or Dogs with Wings at cost of about $30,000. Families are encouraged to help fundraise for their dog but the cost is minimal to families. My friend’s quality of life changed once she got a service dog. Every time her son bolted, the dog was trained to lie down and he couldn’t pull 125 lbs. of dog weight.

Another friend of mine had her non-verbal son wander way from the house this summer when her front door was being replaced. It took several hours and eight police officers to find her son, but he was fine once he was found just a short distance away. She was lucky. She is a person who is exhausted all of the time from the constant supervision required to keep her son safe. When these children wake up at nights as they often do, one has to get up with them and supervise. It’s a hard life.

Bolting has nothing to do with being a good parent or a good disciplinarian. Sometimes this behavior can be modified but in many cases, it can’t. The more severely affected a child is by autism, the more unaware they can be of danger. I spent years trying to train Marc to look both ways before he crossed the street. Even to this day at age 12, he looks side to side and still steps out into the street even if it is not safe because he has followed “the rule” of looking both ways. What has eluded him is that higher level social thinking piece like meeting the driver’s eyes to make sure they have seen him, knowing that not all drivers will follow the rules of stopping even if you are in a crosswalk with the lights flashing.

Educators need to be aware of the bolting problem and provide diligent supervision. This is what concerns me when it comes to aide time. Although my daughter has not left the playground yet, will there be a day that she does because she is drawn to something beyond the fence? With limited verbal skills, would she be OK if someone found her? Would her anxiety kick in and she wouldn’t be able to speak? How can this be prevented when her aide goes home at noon every day and she is left on her own? These are the issues that run through my mind each day I send her to school. It is a constant worry.

My point of this piece is to raise awareness of the struggle for families who have children who bolt or wander away. So many of our families are also headed by single parents who have other children they need to supervise as well. There is no plan to help these families. Maybe this Christmas if you or someone you know wants to make a donation, make it to a service dog organization so that families have a chance to find some peace of mind through the help of a dog. It is one possible alternative to keeping a child safe.

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