Regular readers may know that I am a mom to a special needs, non verbal young adult son. He is among the most vulnerable among us. He cannot tell me if things are okay. As mom I must glean from his actions and signs whether he is happy, scared, hungry or tired.
One of my greatest fears is that someone would hurt or abuse him. Because of this, I am and will always be a ‘helicopter mom’, one who hovers nearby, always watching for an indication that there might be a problem.
I could be the mom in this video. This woman was concerned that her autistic son was not receiving good care. As an adult, the son lived in a nursing home with non-family caregivers. The mom’s intuition was so strong that she placed recording cameras in her son’s room and then watched the videos. The images she saw demonstrated enough abuse to her son by caregivers that they are now on trial for abuse.
With such staggering statistics, it may seem difficult for parents of autistic children to know how to protect against abuse and restraint. Cameras, such as those used by the parents of the 23-year-old in San Diego, are a good starting point.
No doubt, even the most experienced caregiver can become frustrated but it is never permissible to cause harm.
As Pope John Pall II said, “A society will be judged on the basis of how it treats its weakest members…”
When my son was young he was, as he is today, nonverbal. At that time he was also hyperactive and had difficulty focusing causing him to often be in trouble with the teaching staff. This was at a time when kids with significant special needs were still in self contained classes. Today, most children are integrated into regular classrooms, some with one on one aides, depending on their needs. If my son had been in this situation I know he would have caused his teachers great grief. Some of my son’s schoolmates also had difficulty controlling their emotions. Anger is particularly challenging with special needs children.
In our case, we decided we could do better at home and chose to homeschool.
Today as I watched this video of a padded room in the Seattle area I am reminded that most often moms do know best. Yes, sometimes our special needs kids need a time out, a chance to regroup. But I cannot believe putting a child into a padded room without well trained supervision can ever be the best choice.
Should a person with autism be allowed a transplant? As mother to a son with autism I’d like to think the decision should be made by our family after consulting with our doctors. But I am able to wax philosophically because my son is healthy.
Karen Corb of Pennsylvania, is not so fortunate. Her son Paul inherited the same condition that her husband died from at age 28. The only cure for this heart ailment is a transplant.
Unfortunately, transplant decision makers in Pennsylvania have told Mrs. Corby that her son is not eligible for a transplant. The key reason is that he is autistic. They are concerned that he will not be able to manage the medications necessary following a transplant.
To have a transplant is a difficult decision. Surely not one to be made lightly. Yet, should this young man be denied because of his autism? Should people with other “special needs” not be afforded the same consideration as those who are “normal”?
One of the reasons our family has followed the Obamacare debate is because we are concerned that our son would be able to receive the same quality care as his sister who does not come with a label next to her name. We are concerned that a bureaucrat would make decisions about our son’s health care based on their understanding of his contribution to society.
What do you think?
If you want to sign Mrs. Corby’s petition to the Senate to get her son placed on the transplant listclick Petitions.
Originally airing in October, 2011 Sixty Minutes replayed a special on Autism this week as part of their follow up on Apple and Steve Jobs.
As a parent of a young adult, who is non-verbal with autism I am always on the lookout for new and better ways to communicate and converse. As can be seen in the report, not all children respond the same using an iPad to interact and learn. But for those who find computers something with which they can engage these new technologies can be life changing. We have seen first-hand how fascinated our son was with the iPad and how quickly he figured out the programs. Like many autistic people he seems to understand computers without any explanation. The touch screen allows him to easily maneuver without great typing (fine motor) skills.
For many families cost of the iPad is still an issue. iPads are still around $500 and the Proloquo2go app (as seen in the video) is $189, though some schools will loan them to families. But for the child who now has fewer temper tantrums due to better communication or who can engage in society without an interpreter, the iPad cost is small compared to its benefits.
Last week I was on vacation. We were traveling as a family which included my obviously handicapped son. At the first checkpoint we had to show our proof of identification and flight information. The agent barely looked at us. We reached a further security checkpoint where the TSA agent barked orders at us. “Take off your shoes. Take off your belts. Take everything out of your pockets. Put everything on the belt.” If you’ve traveled you’ve heard him.
Fortunately, my son and I were allowed to choose whether to pass through the older, but more familiar metal detector. The agent scowled and snapped on gloves watching my son walk through. “He won’t take off his hat,” he growled to the adjacent agent and then confiscating the hat for further inspection.
My twenty-year-old college daughter passed through the back scatter machine but was then subject to a pat down anyway. This review of our person and our belongings took at least six agents.
Contrast this to our reentry to the US at the border crossing in Canada. The agent took our identification and matched them to each of us. He asked several pointed questions in rapid-fire succession. (Nothing hard: Where do you live? Where have you been? How long have you been there? Did you buy anything?, etc.) He looked at all of us while talking. It did not take long before we were allowed to pass. One agent.
No doubt the number of travelers crossing the border is miniscule to those flying by plane. And my family puts the safety of our flight at top priority. But perhaps a little less acting like a government employee working the cattle line and a little more profiling would accomplish the same thing.