When you tell in the film of how Kyle, at age 4, told of how Jack could go and live with him when you die, it made me cry. Can you tell me a little about their relationship now?
Kyle and Jack have a great relationship. I doubt it is like a typical sibling relationship. Kyle looks after Jack. They go to the same high school. Even though Jack is doing very well Kyle keeps an eye on Jack. Kyle is a lifeguard at the pool where Jack swims.
I still believe Kyle will help with Jack later in life. He understands it is his responsibility and he has never shied away from it. We don’t know what that role will be. Jack continues to surprise us with what he has been able to accomplish.
We now have a goal of Jack living in assisted living by age 25. Jack really wants to be on his own. Fortunately for us the women in my wife’s family historically live a long time.
Jack and Kyle play video games together. Now that Kyle is driving he takes Jack out for dinner or ice cream. Typically though Jack prefers to spend time by himself. Jack goes to all of Kyle’s football and Lacrosse games. Jack would prefer to be somewhere else but he likes supporting Kyle.
Jack is obviously a fantastic swimmer and I enjoyed watching the shots of him in the pool. Is he still enjoying swimming? Has he earned any more certificates?
Swimming is going well. April of 2014 Jack’s pediatrician was concerned about Jack’s weight. Jack was 5’7” tall and weighed 215 pounds. On May 1st our pool opened. Jack started swimming one mile per day. That’s 68 lengths of the pool at our club. By mid-July Jack weighed around 185. He now weighs about 175. Jack took off 40 pounds in four months.
During the school year Jack swims twice a week in a special PE program. He has been able to maintain his weight. He still wrestles me in the pool every day of the summer. He defeats me every time but of course he cheats. J I’d say in the summer Jack spends two hours a day in the pool and one hour a day on the swings. This seems to relax him.
Jack will not compete at any level. We had him in Special Olympics for two years. The idea of competing caused him a lot of anxiety. At the end of the 2nd year Jack refused to attend the state competition. Jack doesn’t usually dig his heels in like that. He is more of a “go with the flow” type of person. When he said he wasn’t swimming competitively anymore we had to respect that.
Unlike the other dad’s in the film, you candidly say that you would take Jack’s autism away in a heartbeat, not for you but for him. Could you tell us more about this please if you are happy to do so.
People’s answers to this question often surprise me. I understand that parents love their children unconditionally. I also agree that autistic people are tremendous people. Autism is a major mental illness. Wouldn’t any parent prefer their child have no major illnesses of any kind? Jack has dreams of being an animal trainer or a veterinarian. He currently volunteers at the humane society. Jack will do well in the world but Autism will have a negative effect on his dreams.
Autism has closed a lot of doors for Jack. We’ve been able to open some of those doors back up. Janet and I wanted all doors open for both of our children. I wouldn’t care what direction Jack wanted to go with his life. We just wanted Jack to have all of the opportunities he wanted available to him.
It’s confusing to me that people wouldn’t take away a child’s autism. Would you take away Bi-Polar disorder? Would you take away Schizophrenia? Would you take away cancer? Why wouldn’t you take away Autism? I’ll never waiver on this one. I love Jack. I enjoy being around him. He’s made so many people better people. Jack is a world changer. I think he could change the world as a typically developing person as well.
I look at Jack’s life with his peers like this. In grade school he was in the middle of the circle. In Junior High he was moving toward the edge of the circle. In high school Jack is outside the circle. People are always nice to Jack but for the most part they don’t notice him. What is next for Jack now that he is graduating this year? Will he ever have contact with people outside our family? Get rid of Autism? Where can I sign up? I’ll be there in five minutes.
At the beginning of the film you tell of how you were in denial about Jack’s diagnosis and that you were so very angry. This is not often discussed and openly shared, so I thank you. What advice would you give to other dads out there who are going through similar challenges?
This is a tough question to answer. I’m certainly not an expert in dealing with denial. How can you give someone in denial advice about something they don’t think they are in? If someone would have given me advice I would have brushed it off.
I have counseled a few people with their child’s autism diagnosis. My friend’s daughter had a son diagnosed with autism. I had never met the daughter but she called and I talked to her for a while. Two years later when I met her in person she said to me, “You were the first one who told me our life wasn’t over.” I hadn’t even remembered saying that. Now that is the first thing I tell someone with a recent diagnosis. Your child can still have a great life. You can still live a happy life raising a child with Autism.
I guess the other thing I would tell someone is regardless of whether you believe the diagnosis you still need to proceed forward with services. We did. That was my wife’s doing. She led the charge in getting Jack help in the early years. I helped but I still chose not to believe the diagnosis. I think deep down inside I really knew. I just didn’t want to hear it. Even if your child is not Autistic the services will help your child advance.