Many in the autism community humble me, but few compare to John Kirton. My interview with this father of six children with autism, took place over two days of emails and phone conversations. It provides unique revelations and a peek into a family’s life exponentially complicated by autism. They’ve known about their children’s autism for only three years. We covered so many topics, there is probably a year’s worth of posts based on what this father shared with me.
John Kirton possesses what we all strive for: positive energy to raise his family and help his children gain the best outcomes, despite few services available in Utah and limited financial resources. His wife, Robin, suffers from Fibromyalgia, and was resting to get ready for the children to come home from school. Jobs have been lost due to absences for helping with the children. I first became aware of John’s family from a 2008 documentary on the Discovery Health Channel, “Autism X 6“. Today, the ever-unfolding story of the Kirton family is a symbol of all the autism community faces and hopes for the future.
John’s concerns, delight in each child’s progress, frustration with service structure and delivery, thoughts about educational supports and opportunities, and financial burdens all came down to how an honest man attempts to save his family, and in turn, to how he wants to help others.
The six Kirton children were identified with autism only after all were born. From ages 5 to 16, their degrees of autism land on different areas of the spectrum- from severely affected to Asperger’s. Here’s John’s update on what’s been happening since the documentary:
We’ve learned more about Autism both personally and how it affects others. Our big round of media attention was in 2008 with People magazine, Good Morning America, Inside Edition, Larry King Live, internet and radio interviews, local newspapers, magazines and TV news programs, and lastly the documentary, Autism x 6, on the Discovery Health channel. As a reference, the filming of Autism x 6 was done from December 2007 to May 2008. Some of the footage was used in the other Discovery Health documentary we were in, Unlocking Autism. The only thing since as far as media was when Autism x 6 was shown in the summer of 2009 in the United Kingdom and Australia.
At home it’s a bit better [now] than in the documentary. Sarah (8) and Ammon (6) have refined their destructive talents, but don’t get into their messy diapers as much.
Last year at this time I was involved with other autism parents in the attempt to get the state of Utah to pass legislation to have insurance coverage for autism treatments. The bill was so watered down by the time it came up for a vote that we had it cancelled for consideration.
This year they have every program that helps autism on the budget chopping block for deep cutbacks. So I’ll be back at it again to see if a difference can be made.
What are the strategies you have put in place in your home?
We’ve Autism-proofed the house with locks, barriers and put things up high to keep the three youngest out of trouble. We’ve done audio therapy with limited results. We’ve done various diets, again with limited results. Emma and Nephi had difficulty with transitions especially at school. The teachers have learned to use a schedule that they put on their desk so they know what is coming next. At the three youngest’s school they use ABA, TEACCH and PECS.
[At home] we’re glad to be able to have them safe, dressed, and eating. Robin goes to the kids’ school and helps out in the classes. Schedules [at school] helped a lot.
We wish we had an area or room where they could do things; we still live in the same house.
[The children] cost us a lot. Sarah loves to tear up the covers of library DVDs. Emma loves to read and Sarah loves to shred. Sometimes the older kids forget to lock the door of the bathroom or the kitchen.
We have two in diapers. Sarah and Ammon are almost nonverbal. Mary was just potty-trained. If Sarah and Ammon have messed their pants she’ll tell us.
One system we came up with that has helped is “Baby Buddies”. We grouped the children into the older three and the younger three. Big kids help the babies- in home and out in the community. Bobby’s buddy is Sarah, Emma’s buddy is Ammon, and Nephi’s buddy is Mary.. Around the house at meal time we say, “Wash your buddy’s hands”, ” Get their drink after dinner”, “Wash your buddy’s hands after dinner” and “Help with pajamas”- if the big kids aren’t melting down!
What extra adult support and services do your children receive within the home?
This year we only have 2 hours once a week for the two youngest; we used to have 2 hours twice a week. Once a week two women from a state agency take Sarah and Ammon out for two hours of respite. There was a summer program like going to school. Because we used that last year for the summer, we were cut back to 2 hours once a week.
Did you have genetic testing?
We were involved in a genetic study at the University of Utah in 2007. The woman doctor you see in Autism x 6 is one of the doctors that worked with us. All of us had blood drawn and were given intelligence tests. The tests confirmed the level of each child’s Autism and the lack of any Autism in Robin and I. The genetic part? We’ve been told that conclusions may not be for years. No Fragile X, Tuberous Sclerosis, or Rett Syndrome.
What are your favorite things to enjoy as a family?
We will go to a McDonald’s or Burger King with a Play land in the winter time. They all love to run around and be crazy kids. These are the times especially when we put one of our AutismBites t-shirts on Sarah and Ammon. When the weather is good we visit a local park where they can again be wild and crazy.
What do you do in your time off from autism?
Some people get time off from autism? Interesting concept. We are able to get out by ourselves maybe 2 – 3 times a year. It’s very difficult to get a sitter. Our local family gave up helping with this YEARS ago. The sad part is the children are much easier to handle now then they were a few years back, but they don’t know that because they don’t come around.
John would like to figure out a way for the disabled and their families to be independent:
People will not be able to be successful in the community if things keep being cut. I’m trying to figure out how people can pool our resources. How to do it? I don’t know.
What advice can you give to other families who have a child diagnosed with autism?
Alison Davis, autism, Autism x 6, John Kirton, momof3au, multiplex autism
If they know they have autism: Find out what resources you have available yo you. There’s a “mishmash” out there. Be involved with state leaders. There needs to be clearing houses of information that’s readily available to families. There’s pieces out there, but there should be some place with a checklist.
I’m helping the man who caused the scholarship to exist for my younger children’s school to run for Congress. Morgan Philpot.