Just last night at 10:30pm, which is normally Ethan’s bed time, we decided that since it’s the summer holidays we would give him a choice of whether he wanted to continue listening to music or go to sleep. Ethan was quick to type that he wanted “music” and so we let him stay up. All of a sudden it seemed as if Ethan got his second wind and he was so excited and giggling with joy. He had used his power of choice and was celebrating. This is just one example of how we treat Ethan. He always has a choice.
As parents of children with special needs, we are always looking for ways to help our children. This is especially true if our kids have medical needs as well. I was recently reminded of this by a local family who are trying to help their nonverbal autistic son. However, before I begin, I wanted to say that this is not a judgment of anyone but rather a learning experience for all of us.
One of the latest “treatments” for severe autism especially for nonverbal kids is a drug called Namenda. This drug was originally tested for the treatment of Alzheimer disease. However, we find more and more doctors are prescribing it for autistic children. The list of side effects is definitely the who’s who of side effects but what alarmed me most was the following statement. Check with your doctor immediately if any of the following side effects occur: blurred vision, dizziness, headache, nervousness, pounding in the ears, tingling of the hands or feet.
In economics, the network effect relates to something that increases in value as the number of people who use it, increases. There is also a negative network effect, where the value decreases as the number of people increases. Facebook is a good example of both a positive and negative network effect.
The more people who join Facebook the more valuable it is to everyone. The flipside is that the more people on Facebook, the more computers they need to transmit updates to all the members. Facebook has so many users that they have created algorithms to decide which updates to broadcast and to how many “friends” to send the update.
The butterfly effect is a mathematical concept that is used to describe a system in which a very small change in the initial state can cause a very large change in a later state. By co-incidence the butterfly effect is also true for some autistic students where a small change in the way they are taught can lead to a very large change in the way they learn.
Last year, we started working with a 21-year-old nonverbal male with autism. He has been through all the traditional approaches and is still unable to type or communicate effectively. The first day, it took him over 2 hours to get into the car to come to the center. He is now at the point where he jumps out of bed on the days he comes in to learn. The small change for him, was allowing him to watch YouTube during his lessons. This change goes counter to everything we have been taught about attending in class, but in this case it actually helps his concentration and he soon forgets about the video as he knows it is always there if he needs it – his security blanket. Just 2 weeks ago, we started working with another 24 year old nonverbal male, and he too responded when he was allowed to watch trains on YouTube during his lessons.
I have always wondered what I would have done differently with Ethan if I knew then what I know now. What would it be like if there really was time travel? I can almost hear the conversation between the older, wiser me and the younger, scared, lonely me.
Our first conversation would be about the future. The first thing I would say is: “Everything is going to be OK. Your child is going to grow up happy and healthy.” Autism is not always a death sentence. The next most important piece of advice is to listen to the experts and not the expurts. Telling the difference between the two is where the older me is also an expert. Other parents who have travelled the road before you are the battle wary experts that you should seek out, as their advice is the most valuable. Surround yourself with experts but remember that you are the final decision maker and if their advice does not gel with your gut, DO NOT FOLLOW IT.
It was the start of a new school year and as usual, there was a new driver on the bus. She was an elderly woman and had been driving for the school district for about 20 years.
As the days went by, the bus driver started to “develop” an attitude and there were always issues with her. She picked Ethan up so early in the morning (6:30AM) that he did not get a chance to finish his breakfast, so we gave him food to eat on the bus. The driver started complaining and threatened that she was not going to let him eat his breakfast on the bus. I was shocked that a driver would behave as such and wouldn’t let a child eat. I called to complain and asked to remove the driver from our route. They give me lip service and said something about the union tying their hands. They could not change the driver.