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We are finally going to see our older son who lives in San Diego with his wife and little boy. We decide to take our younger son who has autism, he might like to swim and go to Sea World. The only time he has been on a plane was to go to Disneyland a couple of times, and it went ok.
I make the mistake of telling him we are going on the airplane a week or so before we are leaving. He says, “airplane, airplane” every 15 minutes for a couple of days, then starts adding, “Disneyland, airplane” the rest of the week. I say, “No, we aren’t going to Disneyland this time”, perhaps he thinks if he says it enough times it will be true.
We make the usual accommodations for the airplane ride, a backpack full of DVD’s, the player charged up, the IPOD with Disney music, books, candy, Benadryl, and some Prozac for me. I sit next to my son and my husband sits in front of him so that when he kicks the back of the seat the whole way there it doesn’t annoy a stranger… I just have to share my Prozac. We put the t-shirt on my son that says, “I have autism, be nice to my mom” so that we can hopefully avoid the stink eye and get a small amount of compassion.
We make it to San Diego without a huge amount of distress, still hearing “Disneyland” every so often. We go to Sea World, he is so afraid that we really might not be going to Disneyland, that he can barely enjoy it. He does like the rides and the whales, but we have to buy him a new shirt when his gets wet because he cannot be wearing a wet shirt, duh. The next day he throws in a couple “Sea World’s” with the “Disneyland” to break up the monotony.
The ride home is priceless. Disneyland does not happen so getting through the airport is a little bit distressing. He is ticked. We find the airport waiting area for our flight. He tries to get out the “special” door at the airport setting off the alarm. The police come. The alarm goes off for a long, long time, talk about sensory overload. We get in line to board… the long, long, very slowly moving line. It’s like trying to contain a rabid cat inside two painted lines… not happening well, people are getting as agitated as we are. Why do they board 1st class first I’m wondering, since they are all getting smacked by this flailing boy, their pre-flight martini’s spilling everywhere. He starts to say, “14, 14, 14”, which was the row we were on leaving for San Diego. I say, “No, we are on 13 this time, look 13, 13, 13”. We get into row 13, finally, and he climbs over row 13 to get into row 14. Hmmm, I say, maybe we should trade these people? He is biting me now and crying. The stewardess says, “oh, don’t bite!” That was a relief, like what would I do if someone didn’t tell him not to bite, that certainly helped a lot. I pull out the DVD player, my pinch hitter, and to my dismay, the battery is dead. Now I’m questioning if there really is a God. So just to be sure, my husband and I both start praying diligently, please, please, make him go to sleep…I’ll really be good from now on…I promise, I will visit the sick, and give my money to charity…and a miracle happens, he does fall asleep.
Next time we are going to Disneyland.
Our son, Payton Taylor Spell was born on February 6, 2003. He weighed 7 pounds and was 21 inches long. He was a beautiful baby. From the time he was born he was determined to challenge us as first time parents. He would wake up about every 2 hours to eat, developed colic and had digestive issues as an infant. Even with all of these hardships, his beautiful smile brightened up our home. Payton seemed to be rather advanced in most of his milestones in life. He began walking when he was 8 ½ months old. His gross motor skills were off the chart. After he began walking we noticed that he was full of energy all the time. I just thought this is what boys did, being that all of my friends had girls. It was not until he was about 18 months that I began to worry about some of his behaviors. He had begun to spin in circles a lot, he also has started banging his head whenever he was upset, and he had not began to talk, although he babbled a lot and did say ma ma and da da quite often. As a special education teacher, I am familiar with Autism, but did not want to think that this could happen to my own son so I chose to ignore many of the behaviors at first.
In August of 2004, I had a master’s class on special education law. The topic of vouchers was being discussed and our instructor had scheduled a guest speaker to come speak to us on the issue. The guest speaker was Cheryl Smith. She spoke about her son and their experience with Autism. As she discussed some of his behaviors I began again to question my own son and the possibility that he too, might have Autism. A friend and coworker in the same class had also mentioned that she thought Payton might have Autism. I was offended at first, but knew she was concerned. I spoke a little after class with Cheryl who told me not to worry. At Payton’s next pediatrician check up I mentioned my concerns to the doctor. She had told me that head banging was typical for his age, but said that since he was not developing speech we should refer him to early intervention. I wanted to put this off, but decided it was time to get him some help. The testing was a nightmare. I found out that my son was way behind because he could not stack blocks, play, or speak. I was determined that he could do all of these things he just chose not to. In January of 2005 I got a phone call from early intervention. They wanted to schedule a meeting to go over his testing. They told me that he did qualify with a developmental delay. I then asked the question, “Do you think he has Autism?” They told me that yes, he did have behaviors that were on the spectrum but that they did not diagnose
Autism but referred me to a list of individuals who did. It was after this that I had an emotional break down. How could this happen to me? All I could think of was Payton and the life that he was not going to have any more.
To make a long story somewhat short it was at this point in my life that I relied on my friends and family more than ever. I began to educate myself on Autism and got some of the best advice ever from his early intervention teacher. She told me, “Payton is the same little boy he has always been, and any diagnosis should not change this.” I really focused on these words. He was still my son and I was going to do all I go to make sure that he remained happy. Since his diagnosis he has been attending a pilot Assert program ran by Utah State University and Weber School District called Partner’s for Success. While Payton still does not have any language, he has made tremendous progress. We take it one day at a time and just want to provide Payton the tools he needs to get along in his everyday life. This next year will be another tough one as he will be transitioning to kindergarten. We have decided his best placement is in a special education unit. We have visited the classroom and are very impressed with the environment. I guess our biggest frustration is that we know that Payton is capable of learning and progressing, but the programs and services for Autism in Utah is very limited. It seems like all the “good” programs cost more money than the average family can afford. Being that I continue to work in the public school system I have every faith that we can meet the needs of all students! It is with this optimism that we will move into the next chapter of our story with Autism.
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