We have twenty-seven interviews for our Author Interview Series and only one of those is by a man. Woven throughout Look at my Eyes: Autism Spectrum Disorders: Autism and PDD-NOS are sections called Seth Says. In these sections we get a glimpse of how the father feels raising a child with autism. We read about his fears, his dashed dreams, his shaky hopes for the future, and his wise words of encouragement. It is refreshing to get a father’s view point and counsel as often these books are written by moms. Therefore, if you are a father of a child with autism Look at my Eyes will appeal to you also. Read my review of the book here. Interview with co-author Melanie Fowler here.
I am very pleased to welcome Seth Fowler to our Interview Series and look forward to more practical advice on parenting a child with autism.
Lorna: Hello! We are so glad you agreed to answer a few questions. Tell us a bit about yourself and how Mr. & Mrs. Fowler decided to write a book? Had the Seth Says sections been part of your original plans?
Seth Fowler>> First of all, thanks for allowing me to be a part of your Interview Series. It’s a privilege to share my thoughts and opinions as a dad of a child with autism. Hopefully the numbers of dads getting involved will increase!
The decision to write the book was a no-brainer. Melanie and I were at a conference one summer and we were in the midst of our legal battle with our insurance company, we had just come through a really rough stretch as a family with our son not sleeping (therefore the rest of the family not sleeping) and yet we were at a breakout session at this conference on autism and people were asking the simplest of questions and the people leading the sessions had knowledge…but not real life information that the participants wanted to hear. Melanie had just written an article for a local magazine about our situation, and we just looked at one another and said, “We need to write a book….NOW!”
We knew we didn’t have all the answers, but with Melanie’s background and education and our real life experiences, we knew we had a story to tell that would hopefully encourage and empower others dealing with child with autism.
As for the book…I really wanted it to be Melanie’s thing. She did the lion’s share of writing and did such a great job of putting her thoughts and knowledge and experiences on paper. But as she wrote and as we both got more and more involved in dealing with our situation, we realized that having a father’s perspective might be impactful.
Melanie and I didn’t really discuss it (although I think we both were thinking about it) but we were in a meeting with the editor and I wouldn’t shut up and the editor said she thought it would be fantastic if I wrote portions as well…so “Seth Says…” was born.
Now that I’ve started, I can’t stop writing…I’m having a blast!
Lorna: You wrote, “It’s depressing and absolutely crushing, not only because we fathers are grieving for all the things our children will not experience, but because we are trained that it’s a rite of passage to pass along our interests, desires and skills to our kids… and that’s probably not going to happen.” What advice do you have for others who suddenly realize the same thing?
Seth Fowler>> Yeah, that’s just one of the toughest things to deal with…especially at such a young age. I would image all parents deal with the loss of expectations they might have for their children…but that’s probably when their children are older…I went through it when my son was two-years-old.
First of all, we need to realize that it’s not about us. We need to get over our selfish mindset that we “deserve” this-and-that. It’s hard for sure and I’m the first one in the “It’s All About Me” Line. Parents…dads…we are owed nothing. Your child didn’t ask to have autism.
My advice for fathers is “Don’t assume the worst.” One of the things I mourned over was thought of never taking my son to sporting events. I didn’t think he would ever pay attention or want to sit for long periods of time. Well last summer someone gave us tickets to the Texas Rangers baseball game and not only did we go but William loved it and it just made me so proud. I took a photo of us eating cotton candy and posted it on Facebook and many people replied and reminded me how I didn’t think that would ever happen…and there we were, my boy and I were enjoying a game together!
He might not crave to go to games or might not ever keep score or talk with me about his favorite players, but for one summer night in Texas, he and I enjoyed the game…and that was a blessing.
So fathers…if you’re listening…yeah it’s tough but when you least expect it, blessings will come and you’ll be able to make your own memories and traditions.
Lorna: In almost every book on parenting children with special needs, the importance for husband and wife to make time for each other is brought up. You wrote about the marriage: If you don’t take a few moments to spend together, then it’s not going to last.” What suggestions do you have for spouses to work as a team, to support each other, and to make time for each other?
Seth Fowler>> Absolutely. It is so important to spend time together. Heck these aren’t tips for special needs families…this is for every marriage! I have to say this is still so tough for us because we just live hectic lives, but even if it’s turning off the TV and sitting on the couch after the kids are asleep and talking…that’s a huge help.
It’s sad that we have to encourage husbands and wives to be a team, support one another, make time for one another…it’s just common sense, if you’re not investing in your relationship it’s just a matter of time before it’ll be over—special needs or not.
Lorna: You wrote, “I am filled with joy that I have a son and he has my name and it’s not about me or my silly expectations—it’s about loving a child who isn’t “typical” but who is a special child of God and someone I am proud of.” To arrive at this acceptance most likely took a while, share how it happened and how other parents can achieve this also.
Seth Fowler>> Well it certainly didn’t happen over night and wasn’t easy. I’m not some “rose colored glasses” type that says “thank God for this miserable situation” all the time. I was really depressed, really upset, and really angry at God, life and just about everyone I could find when we were dealing with the initial diagnosis. I still grieve—that’s one thing Melanie and I always say when we speak at conferences… “It’s okay to still grieve, but you have to get past it because staying in your grief won’t help anyone.” So I still grieve but as a Christian I 100% know that God doesn’t make mistakes. Being a sovereign god, He isn’t surprised by circumstances. It wasn’t like God said, “oh no, William is autistic” when he was born…so I know that William was made in God’s image and was given to us to glorify Him.
I can’t imagine what our lives would be like without having William the way he is. Do I wish he were “typical” at times? Of course I do. But I know that he was given to us for this very reason…we wouldn’t have had the opportunity to write a book, speak at conferences, touch people’s lives if we didn’t have William. Our mantra has always been, “If we can impact just one person’s life and help just one family, then we will have succeeded.”
How can parents achieve this? Wow, wouldn’t that be a nice elixir to make and sell. I really think it comes down to faith and your heart…it can’t be forced or faked…again, IT’S NOT ABOUT YOU…love your child because it’s your child for crying out loud.
Lorna: All the serious, absolutely essential information in your book is sprinkled with encouraging excerpts of William’s achievements and wise tips from his parents. When you get to the last page you are amazed at all you have learned in 122 pages! What tips do you have to help the siblings of children with special needs feel that they are an important part of the family also. How do you make time for the sibling when the child with high needs demands so much time from the parents?
Seth Fowler>> Great question. I am actually about to sit down and write a blog about this for a few sites where I blog. One of the things Melanie and I discussed early on was that we were family as soon as we got married. We didn’t become a family when William or Margaret was born. We decided early on that we were going to make decisions that were in the best interest of the entire family and we weren’t going to put William’s situation ahead of what’s best for our family.
Margaret is 2 years younger than William and she is off the charts! She’s verbal, she’s smart, she asks amazing questions and talks, talks, talks…almost too much (she’s like her dad!).
We are very honest with Margaret. Kids are smart cookies. They know when another child isn’t the same as they are and they’ll ask honest and brutal questions. We let Margaret know that William was different but that God loves him just as much as He loves Margaret. Mommy and daddy love both equally, and that there would be times when William might do something and get away with it whereas if Margaret did it, she would not be allowed to get away with it…simply because we can’t punish William for every single transgression.
I think the main thing is to be open and honest and treat the situation for what it is. Don’t make up a silly story or lie to hide the truth from the sibling.
What we’ve seen is that Margaret has this amazingly sensitive and loving heart for her brother. She tells us how she’s going to take care of him and is going to help him as he grows. So she actually is the older sibling.
You can see an amazing interview with Margaret on YouTube and it is beyond amazing!
Lorna: Parents of a child with special needs must have support. They need help so that they have enough energy to advocate for their child. What do you do keep everything in balance? Where do you find the best support?
Seth Fowler>> Ha…everything in balance. Not sure I’ve figured that out but yeah, we have to have energy…but then again, so does every parent. It’s just that at times, we might need a little more energy and patience as we deal with a child on the spectrum.
Our main source of support is from our friends, family and our church. We attend a wonderful church that has embraced us and William with open arms—sadly you don’t find that in every church. Melanie has coffee with other moms from William’s school once a week and that’s great for her. I have breakfast with a group of guys every Friday that I can talk with. About 70% of the time our Friday breakfasts are just catching up and a bunch of “yuck-monkey” stuff, but there have been plenty of times over the years where the breakfasts are really in depth and deep discussions.
The biggest thing is to not keep it inside. Whatever the emotion: sadness, anger, confusion, frustration, depression…it can totally overwhelm you and eat you up inside and that’s not going to benefit anyone.
Lorna: The goal is for your child to be as self-sustaining as possible one day. What has to happen to make this happen? What changes would you like to see in our government health and education systems to help parents of children with different needs?
Seth Fowler>> A lot has to happen. As recent reports have indicated…1 in 88 children are going to be faced with some sort of pervasive developmental disorder. We can’t count on our government to bail us out of this predicament. We need all churches, private companies, and government to pool resources to provide a roadmap for success.
It really scares and keeps me up at night to think about 1 in 88 children being 18-years-old and not trained how to function in the “real world.” What’s going to happen to these children when they can’t find work? What kind of burden is that going to put on the local government when there isn’t enough tax money?
I recently read a study that claims it costs upwards of $3.2 Million for the Federal Government to support a child with autism as they get older. That’s around $35 BILLION dollars a year.
I know that the government isn’t going to do what they need to do…it’ll be a typical Red vs. Blue battle and in the end, the children will be the losers.
We need to start teaching these children how to adapt to society as much as possible. We need to teach these children a skill…cooking, technology, math, mechanics…whatever…these kids aren’t dumb, they just don’t have some of the social skills many of us possess to get along in the world.
Also we need to educate the public and the business world how to react to children on the spectrum. So there needs to be education, training and support going both ways.
Honestly I am quite discouraged at this stage in regards to programs and educational opportunities for the mass of children in that 1 in 88 number. Our government MUST figure out how to put away differences and get something done. Our local businesses need to step up and fund programs that might actually benefit the businesses in the long run. Our churches need to embrace those on the spectrum and help fund initiatives as well.
Lorna: Thank you so much for this interview, Seth! Give us your links so we can follow you.
Seth Fowler>> Well I hope I wasn’t the longest interview you’ve ever done. Can you tell that I have a lot to say and have a passion for this?
I’d love to hear from your readers if they have any suggestions or blog ideas. Together we can make a difference.