Our family has had rough situations where others made zero attempt to understand Trent's condition. They didn't want him to influence their children or to teach them that non-perfect behavior is acceptable. What a blessing they missed!
[Trent is now 19 years old and has had autism since his vaccinations at age 2.]
I am so very thankful that we were able to homeschool Trent. As a family we decided to forgo financial rewards so I could stay home and teach my own children. No one will ever convince me that it was not the best option for each of my children, but especially for Trent.
As I hear the news stories talk about "behavior" problems with these students, I can't help but wonder that if only these people could grasp the simple concept that autism is a condition and that when these children "act out" it is NOT a behavior issue but an autism issue. Would these same authorities punish a blind child because he couldn't see, or ridicule a mobility-challenged child because she couldn't do jump-n-jacks? Yet, because of a lack of understanding or compassion, some people expect a child WITH autism to perform just as a child WITHOUT autism.
Often when I am asked to speak to groups or at conferences, I start the presentation with a radio set between two stations so that the conversations are intermittent. I have a volunteer flash the lights on and off. I shake hands of the attendees with "sandpaper-like" gloves and have someone occasionally scratch their nails against a blackboard. Then I begin to teach something complicated. All this takes less than thirty seconds and I can see the strain on the audience. I ask them how painful and difficult it was to hear me with all the other noise, lighting issues, and discomfort in the room. Most say they couldn't take it for even a whole minute.
How then do you think an autistic child deals with these conditions 24/7.
Trent can hear fluorescent lights -- akin to nails against a blackboard. He can hear elephants and dog whistles. He can hear conversations in the neighboring houses. He can smell the stench of skunks more than five miles away. You can imagine what a Sunday morning in a church with all the perfumes, hair sprays, and tonics must smell like to him. He is hypo-tactile. You know how your cheek feels when the dentist loads it up for an extraction. Imagine your whole body like that -- not feeling second degree burns until they approach third degree. Imagine vision that is disjointed like watching life on fifty different TV screens with parts of the picture in each one. What if your peripheral vision was your dominant vision and your macular was subdominant? You could only focus on something by looking at it sideways. Imagine life like this every minute of every day.
Don't you think you might develop some coping techniques?
Every one of Trent's "isms" is a direct result of how autism has affected his senses and mental capacities. He banged his head to feel something in his numb forehead. He would hum to himself to help drown out all the noise from the world. He would repeat and repeat phrases as he tried to learn them and try them out. He would cry when there were loud noises or sudden commotions.
For years we have done extensive therapies with him. None of them were behavior modification -- because he doesn't have a behavior problem. As we addressed each physical manifestation of his condition the "ism" would lesson or in some cases disappear.
For example, once we found out his peripheral vision was his dominant vision -- all his so-called lack of eye contact made sense. He was looking at me -- just in a manner where I was in focus to him. We completed years of vision therapy to retrain his eyes so that his straight-on vision is dominate. That too often noted "complaint" about children with autism not making eye contact -- disappeared -- he sees now with his macular vision as dominate. I've heard horror stories of therapists working to modify lack of eye contact by giving candy when a child looks forward when told to "look at me" and either being tapped or having a reward taken away when he looks at the therapist from the corner of the eye. As if it was just a simple issue of telling a child to "look at me" and all the physical issues will disappear. Admittedly, there are some moments of success as there is a tiny bit of ocular therapy built into the refocusing exercise. Yet, it is like going from Daytona to Tampa the long way around-- up the Eastern Seaboard, across the Canadian border, down the California coast, across the Mexican border, and looping back around the Gulf Coast. Isn't it easier to just go across I-4 from Daytona to Tampa directly? That is what happens when autism is treated for what it is -- a physical issue. Address the physical issues and many of the so-called behavior problems are lessened.
Does Trent still have issues? Yes. But he is a thousand times better than he was and he behaves wonderfully most of the time -- because we have adapted his world, by adapting our world to either adjust to his physical needs or via therapy to help him adjust to our world -- because it is the SAME world. Just as we would install ramps for him if he was wheelchair bound, we balance our lifestyle to fit his needs. [More in future blogs]
When Trent was first diagnosed the figure I was quoted was 1:100,000. Not it is more like 1:150. That means for an average school 4-5 of their students will have autism. I think the education community, the Faith community, and the rest of us had better prepare to embrace these wonderful individuals.
You see, Trent is a blessing. His autism, though severe and life changing, is as much a part of him now as is his complexion and hair color. He is not disabled. He is enabled. Certainly, he lost some attributes when those vaccines changed him, but he gained many characteristics. I'll write more about this later, but to give you one nugget -- Trent is the happiest person I have ever met. He has a clarity of purpose and a level of resourcefulness that is superhuman. I can tell you this, that if you were ever on a deserted island, Trent is the last person you would want to vote off -- he is ingenious when it comes to finding food, figuring how to get to and through things, and he has a prayer life that is truly awesome.
There is quite a bit of discussion about the news stories I lead with, the Internet is full of them. I don't feel I need to add to the rancor, but I do feel led to pray harder. Right now, pray for the teachers, the staffs, and those affected by these situations. Especially pray for the parents and the children. I know it is easier to rant, but instead, please pray that the next time you come in contact with a person with autism, your own response will be one of compassion, understanding, and love. I know persons with autism act differently than the "normal" child, but there is a reason.
Perhaps if I share with you how I introduce or prepare a group of children before they meet Trent it will be helpful. I ask the children if they ever watch "Heroes," "X-Men," or "The 4400." Do they remember how Peter Parker changed into Spiderman? I continue with examples from entertainment until it triggers a memory for them. I tell them that just the same way, Trent was affected by a shot and he now has superhuman hearing, smell, and sight. Then I ask them if they know what happens to Superman when he gets near kryptonite. Do they notice that those who have extraordinary skills also usually have a side effect or weak point. Then I explain that since Trent has superhuman hearing, he wears high tech earphones to shield him from all the conversations in the buildings around us. I'll even let a volunteer try his earphones on and he or she usually can't hear a single sound, yet, Trent can hear me whisper to him from across a large room when has them on. The children think this is cool. Trent instantly goes from "freak" to hero. Every time I have introduced him or had the change to set the stage for people meeting Trent, they are fascinated and awed by his gifts and ability to cope.
So much is in the attitude. Someone else could have just as easily prepared other students by saying, "You are going to meet someone who is weird and not at all ike us. He is going to act strangely and might scare you. Don't get too close. He's never hurt anyone, but we don't ever know. . ." It is all in the perception and attitude. Trent is wonderful and fascinating. He is different. But, it all depends on how we look at our world and how we view those who aren't exactly like us.
I do believe we make the world we want to live in. I choose to live in a world that is loving and compassionate. So, today, I'm going to make my corner of the world where I have any influence a loving place and I'm starting with me. I pray for forgiveness for those people in those stories, I pray for healing for the families, and I pray that we can all grow to be more loving through these situations. Now I'm off to work some more therapies with Trent and to be around the happiest person in the world -- he works like good medicine for may soul.
May you have a blessed day!
Jill Bond
PREACCH Founder
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