Of course, she knew something was wrong. With a degree in speech pathology and a master's degree in special education, Melanie Fowler knew that her precious first child was not developing normally. But even this classroom veteran did not recognize the signs of autism, a wide spectrum of puzzling and pervasive developmental conditions that marked her son and threatened to topple her family into a black hole of despair.
Melanie and Seth Fowler never imagined that their child would be anything but normal. Like a powerful storm that tossed them like shipwreck survivors onto the shores of a foreign country, autism threw them into a strange new land. They did not know then that their patience, resourcefulness, faith and even their love would be tested in such a way.
William is 5 now, and the Fowlers have learned so much about navigating the system and integrating a special needs child into their family that Melanie has written a book about their five-year journey.
Look at My Eyes is a revealing how-to book for families that is also useful to teachers. It's more of a short but practical guide than a memoir and includes such things as how to find a baby sitter for a special needs child, how to get insurance coverage, how to find agencies and therapies that help, how to give the right sort of attention to the child, as well as suggestions for fun and educational activities.
Melanie wrote the book, but Seth contributed a number of observations from a father's point of view that give this little tome added heft and interest. As director of sales and marketing for HD Homes, a division of Village Homes, Seth is always on the go, but he makes time to blog at www.lookatmyeyes.com. It is a candid, sometimes soul-searching view of autism and the life of one family.
He and Melanie are already talking about their next book. "We've learned so much more, and we want to share that information," Melanie says.
They sat down last week for a short chat at their Fort Worth home.
Melanie, you knew early on that William was not developing normally. Did you and Seth talk about it?
Melanie: We both knew his speech was off, but we didn't want to look beyond that. I wanted professional advice, but I did not want people's opinions and I did not want another article. ... We had an appointment at the Child Study Center, it took six months to get in, but we were waiting. I thought, 'Wwe're going to deal with this and move on.'
Seth: We both knew something was wrong. But we didn't talk about it. It was the elephant in the room. People were flooding us with articles and information. We were defensive.
Many parents feel that "labeling" will limit their child's potential, but you advise parents to get a diagnosis as early as possible. Why?
Melanie: It's imperative. If you are looking for insurance coverage, you will not get it without a diagnosis. You have to have a diagnosis. Early on there are places to go for help ... the ECI (Early Childhood Intervention ) is state-funded and it was great ... but for help beyond the age of 3, you must have a diagnosis so you can move to other programs.
Beyond getting a diagnosis, what is the most important thing to do to get insurance coverage?
Melanie: Be a pest.
Seth: Fight. You have to fight. They're going to give you the run-around. That's what they do. Melanie was a bulldog. ... Document everything. When you make a call, write down everything: the date, time, name of the person who answered the phone, details of the conversation ....
Melanie: All that can be leveraged to your advantage if you have to pursue a lawsuit. We did that. It took 17 months, 17 hard months, but it was worth everything.
Seth: Now William is getting the services he deserves. That experience made us stronger together.
Seth do you have any advice for fathers facing this sort of challenge?
Seth: Be the man God has called you to be. Love your wife. Love your family. Find a group of men to talk to ... to walk beside you. Put away the selfishness we all have. Realize it's not just about you ... Melanie and I are the family. Our children are pieces of that, but we are the family.
Melanie do you have advice about how a couple can weather the strain of raising a special needs child?
Melanie: You need support. No one can do this alone. It can destroy you. You've got to have friends. Be open and communicate with your spouse and get away together. Date night is important. You have to have some time to be together. You've got to recharge.