A father shares his son’s journey into adulthood and the obstacles they’ve faced along the wayJune 15, 2022
When Ted K.’s son Philip, age 21, was diagnosed with autism at 14 months old and epilepsy at age 13, Ted and his wife Maria knew they would have to make sacrifices to help their son reach his full potential. The years since have not always been easy, but thanks to his parents’ strength and dedication, Philip has grown into a driven young man with a bright future ahead of him.
In this Q&A, Ted shares his journey as a father and the ways that he has supported his son’s transition into adulthood.
Can you tell me a bit about your son Philip?
Philip is 21 and is graduating from high school this year. He was diagnosed with autism at 14 months old and epilepsy at 13 years old. Philip is a numbers and computers kind of kid. He also likes music, swimming, biking and basketball. We try to keep busy and do as many of those activities together as a family as we can.
We are very proud of where Philip is at this point in his life. He’s taller than I am, he’s better looking, he has total self-confidence, he plays the piano better than I do, he’s a better swimmer and he has an incredible work ethic that is beyond what I see in a lot of kids his age. He has a great resume of work experience that he can continue to build on and he never gives up.
What’s next for Philip now that he’s graduating from high school?
We’re going to take the summer off, but in the fall, Philip has a part time job where he does bookkeeping and data entry at a local accounting firm. Since school is over, it’s up to us as his parents to explore and put together an adult life for him. We’re looking around for social activities, additional work opportunities and more opportunities for learning.
How do you support Philip in his day-to-day life?
We want Philip to be as independent as possible, so while we try to provide some structure, we’re at the stage now where we step back and give him the opportunity to practice his skills. Our expectation is that he’s a contributing member of our household, so we want him to do his own cooking and cleaning.
We also involve him as much as we can in the financial management of his own affairs and of the household. That’s how he got started with bookkeeping—we got him involved in writing checks and doing online bill payments for us, so now he does that for clients because he showed a real aptitude for it. That’s a big part of parenting, especially for me as a dad; I have to keep exposing him to new things and see what sticks.
The other important thing to know is that Philip has epilepsy, which is not uncommon in autism. A big part of how we support him is someone has to be with him all the time in the event of a seizure. We have to give him medication several times a day to keep his seizures under control and always be there if one breaks through to give arresting medication and to make sure that he’s safe in his environment.
What are some of the biggest challenges you’ve faced as Philip has grown up?
Early on, I made the decision that to support Philip and help him live up to his potential, whatever course we set had to be one that was realistic for the whole family. It’s a continuous balancing act between his needs, my wife’s needs and my needs. It’s difficult to pace yourself and maintain a high level of effort over the long term, but as with any kind of parenting, you get out of it what you put into it.
For us, the beginning when he was still in preschool was extremely difficult. We had to manage his therapy program, which was 7 days a week with long hours, weekends and holidays. Our lead therapist at that time gave us some good advice. She said you just have to wake up every day and give it your all, even if you don’t know if it’s going to work in the long run. There may be some great days when you see progress and other days when things go horribly wrong, but the best thing you can do is go to bed and try again tomorrow.
What are your biggest sources of strength and support?
I think the most important thing is that Maria and I have a strong marriage that we both invest in. That matters tremendously because we have to be able to pass the baton back and forth when the fatigue and the stress gets the better of us. We have the same values, so we know that we’re pulling in the same direction all the time. We also have a few close friends who get it, who take an interest and give a lot of their time and effort to supporting us. Beyond that, our church has been the best thing in our lives for the last few years. It’s very important for us to know that there’s a place and a community where Philip will always be welcome.
How do you juggle your work life with your family life?
I’ve been doing IT consulting and contracting work for the last 10 years. Before that, for most of Philip’s lifetime, I was in a conventional corporate job working in the investment management industry. During the early years, that job was a godsend—it was the anchor of stability that we could all hang onto.
When Philip was young, I compressed my work week into four days and spend the fifth day at home working with our therapy team and learning as much as I could from them. The need to do that and manage things during working hours was career-limiting. That’s one of the reasons that I eventually had to leave the investment business. I had to make some tough choices and although it was a good career, I think you should never have any regrets as long as you’re living out your values, and I always put the family first.
About 10 years ago, I went back to school, got a master’s degree in computer science, and started my IT contracting work. When Philip was in school, it was manageable because I had a block of time during the day when I could work and take phone calls. Now that he’s out of school, we need to chart a new course as a family because we don’t have that flexibility anymore. It’s a completely new and different situation, and we’ll have to figure things out for all three of us as we go.