Wednesday, June 18, 2014
All Eyes on Isaac!!!!
One of the most difficult challenges we have is Isaac's tendency toward elopement. Unfortunately, we are not alone in our struggle. Elopement is the high falutin' educational word to describe the fact that Isaac is quiet and quick and may well leave the area he is supposed to stay in. Most little children elope...at least for a second. Any parent whose child has strayed out of eyesight for a second too long knows the feeling of terror that grips your stomach and your heart when you realize that you cannot put eyes on your charge. Thankfully for most parents, this stage is short lived. For many families of children with autism, the stage is ongoing and is a source of constant worry.
The first time Isaac went missing was at a church nursery. He was three and had just been diagnosed with autism. We had taken him to the big boy nursery that Sunday as he had outgrown the infant to toddler room. The church was moderate size. It was too big to know everybody there yet too small to be thought of as a megachurch. There were two services and it was common for parents to drop their children off and pick them up throughout all of the worship hours. Sam went to get Isaac. The very sweet lady looking after the children assured Sam that "Isaac wasn't here today." Sam told her that we had dropped him off before service. A look of shock passed the sweet lady's face when she again stated that she had not seen our son for the entire hour. The church was very near a road. If he had gotten out....we did not want to imagine that. We tried to maintain our senses knowing that if we panicked we would lose more time. We looked all around and finally found the boy in the baby nursery that had been abandoned as there were no babies during that service to tend. Isaac had slipped out of his new room as parents were dropping off and picking up their children and had retreated to the dark baby room to play with the toys there. He had been unattended by all but God for an hour. The lady felt horrible. The church felt horrible. We were relieved as we clutched our little prodigal in our arms. I wish I could say that was the last time Isaac had wondered off.
Isaac left the house once as I took up one load of dry clothes and put them on my bed and then came back downstairs. I had been upstairs ten seconds, but the door was open and he was gone. He left once when we took his younger sibling to use the restroom during toilet training. He has slipped away to discover the joys of someone's entertainment center as we were trick or treating. When he learned that everyone has a television and a computer and a kitchen, his array of options exploded and it was nearly impossible to keep him safe inside the house. We took turns guarding the exits to make sure the boy would not leave. If we had to use the restroom, we took him with us. There was no other alternative. We tag teamed with each other for the opportunity to shower. He stays up all night so the challenges were ever present. Finally, our pleas were heard and the state stepped in to offer one time structural assistance. Most families request ramps so that a loved one in a wheelchair can access the house. We requested a wooden six foot fence to be installed backwards so that Isaac would not be able to scale the obstacle and resume visiting neighbors and their electronics. We knew the fence could not deter Isaac's escape...but perhaps it would buy us some time and he wouldn't get as far away.
Every month or two you hear a news story about a person with autism eloping and coming to great harm. Many drown. Several die of exposure. These folks leave their homes, schools or care facilities. Elopement is a pervasive danger within the autism community. Many with autism (though certainly not all) are affected by this desire to simply walk or run away. Isaac struggles with intellectual disability and so cannot perceive the myriad of dangers he is exposing himself to when he leaves the safe haven we create around him. Isaac is instinctually and powerfully drawn to his chief interests...electronics at the moment followed by food. He, like all of us really, can get bored with what he has. When that happens, Isaac follows his instincts to procure his desires in other environments.
We ALWAYS have eyes on Isaac. ALWAYS....at home, in the community, at church, everywhere. Do you remember that stage in your child's development when they would get into everything and you had to always have eyes on them (between 18 months and three years). The thing that keeps these small sweethearts alive through that developmental period is that they are short. They are further hampered by their inability to successfully navigate difficult doorknobs. Isaac is taller than me now and there is no door that he cannot out maneuver. We have never left the parenting stage of constant vigilance. I sit at the computer that I have placed in the kitchen. From here, I can see every entrance and exit to our house. Before I take a break to use the restroom, I will call Isaac's sister from her room and have her come down and keep watch. This is how every day passes with Isaac. If we don't, we risk Isaac's elopement. We risk the danger of injury or death. We even risk the chance that some well meaning person who is ignorant of the situation as a whole may report and accuse us of neglect or endangerment. So we keep watch and we take turns using the bathroom.
I don't write this to depress you dear friends. I want to create a window for you to see the joys and sometimes the struggles of the families that are caring for individuals that are severely affected by autism. There is no understanding without knowledge. I share knowledge with you so that you may share compassion with those who live this reality. I share because a lot of people are afraid to. They are convinced that their struggles are the result of their own poor parenting. Any family can be affected by autism. Amazing parents sometimes have a child with autism. People who are not good parents sometimes get a child with autism. The numbers are one in sixty-eight. Boys are more likely to be affected but beyond that autism does not discriminate by socio-economic group, race, educational status, patience levels or ability of parents. We just get dealt a card. I'm just giving you a peek at my hand.