KODEY TONEY: Temple is my body

I sat down to write this column about something else, but as I began to research I found an interesting site with quotes from Temple Grandin. I have used some of these in the past, but I realized that I needed to share some more. This woman has so much information and knowledge to communicate that will help us as parents and advocates understand a little more about the spectrum of autism. Quickly, for those of you who are not familiar with her, Temple Grandin, according to her website templegrandin.com: “… didn’t talk until she was three and a half years old, communicating her frustration instead by screaming, peeping, and humming. In 1950, she was diagnosed with autism and her parents were told she should be institutionalized. Dr. Grandin has become a prominent author and speaker on the subject of autism because ‘I have read enough to know that there are still many parents and yes, professionals too, who believe that ‘once autistic, always autistic.’ Temple Grandin, Ph.D., is now the most accomplished and well-known adult with autism in the world.” She was also featured in a movie that won many awards which starred Clair Danes.Her books are great sources for information and understanding on the subject of autism, especially Asperger’s Syndrome. With that, let me share some great quotes that she has thrown out over the years. “I can remember the frustration of not being able to talk. I knew what I wanted to say, but I could not get the words out, so I would just scream.” This helps us to understand the frustration and loudness that can come from a person with autism. So many times I hear people say, “Well he screamed for no reason,” or “He hit for no reason.” I can’t tell you how untrue this is. If a child has an outburst there is a great chance that they are trying to communicate. We may not know what they are trying to say, but we can almost guarantee that there is something recently that has bothered them, or that they have been trying to say. “I cannot emphasize enough the importance of a good teacher.” Me either, and we have been blessed throughout the years to have had some good ones. “People are always looking for the single magic bullet that will totally change everything. There is no single magic bullet.” I’ve gone through this in past columns, but I will say that it takes therapy, hard work from the parents, and everyone in a child’s life to help them succeed in life. “You have got to keep autistic children engaged with the world. You cannot let them tune out.” This is the quote I was actually looking for when I began the research. We have been working hard to try and keep Konner from just sitting at the computer or on the iPad all day. This is really hard because we are busy. It’s so easy to just let them sit there and help us do other things. “If you start using a medication in a person with autism, you should see an obvious improvement in behavior in a short period of time. If you do not see an obvious improvement, they probably should not be taking the stuff. It is that simple.” I’m often asked about medicating children on the spectrum. There is enough here to write another column, but I will say that if you do you need to monitor the child’s actions. We have been fortunate to work with a good doctor who does not play favorites when it comes to medicines. “Normal people have an incredible lack of empathy. They have good emotional empathy, but they don’t have much empathy for the autistic kid who is screaming at the baseball game because he can’t stand the sensory overload. Or the autistic kid having a meltdown in the school cafeteria because there’s too much stimulation.” This is so true. Enough said.“A treatment method or an educational method that will work for one child may not work for another child. The one common denominator for all of the young children is that early intervention does work, and it seems to improve the prognosis.” Again, once you’ve met one child with autism you’ve met one child with autism.“If you have autism in the family history, you still vaccinate. Delay it a bit, space them out.” We did this with Kruz. We were concerned with him, as any parent with one child would be, so we had to take trips to the health department because our doctor would not space them out. However, this is my recommendation as well. “Autism is a neurological disorder. It’s not caused by bad parenting. It’s caused by, you know, abnormal development in the brain. The emotional circuits in the brain are abnormal. And there also are differences in the white matter, which is the brain’s computer cables that hook up the different brain departments.” This can help with the guilt part of learning that your child has autism. “I would never talk just to be social. Now, to sit down with a bunch of engineers and talk about the latest concrete forming systems, that’s really interesting. Talking with animal behaviorists or with someone who likes to sail, that’s interesting. Information is interesting to me. But talking for the sake of talking, I find that quite boring.” Konner will talk to me about anything…as long as it’s what he wants to talk about. If I sit him down to talk I can only hold his attention so long and then the conversation is over. “One of my sensory problems was hearing sensitivity, where certain loud noises, such as a school bell, hurt my ears. It sounded like a dentist drill going through my ears.” Interesting! I also recently read from John Elder Robison that he hated loud noises unless he made them. And finally: “Autism is part of who I am.” We can’t forget that this is who they are as people. I know that may sound ridiculous to parents of a child, but many other people want to change things. This is their personality, or as Patrick Schwarz would say, their attribute. Kodey Toney is a parent of a child with autism. E-mail him with questions or ideas at pervasiveparenting@hotmail.com. You also can find all columns archived at blogspot.com.