During this Advent season, we’re going to be talking about peace… how to spread it, how to feel it and how to keep it! I can’t think of a better way to kick off this series than with my good friend, Jolene Philo. Jolene is a teacher, author, wife and mom…and she is one of the most peaceful people I’ve ever met!
Jolene’s new book, Different Dream Parenting, gives practical wisdom and insight for parents who are raising children with disabilities. She tackles tough subjects with the wisdom of a mom who has been there, and offers comfort and encouragement with steady guidance. I asked Jolene a few questions about her book…here’s what she shared with me:
Katie Wetherbee: Why did you write this book?
Jolene Philo: I wrote Different Dream Parenting and my first book, A Different Dream for My Child, for one reason. Twenty-nine years after the birth of our son, the memories of his weeks in NICU are still fresh in my mind. I remember how alone we felt. We were 25 years old, 750 miles from home, clueless. If there’s anything I can do to help parents in similar circumstances know they are surrounded by people who care, I will do it. If I can make them understand they are God-appointed to advocate for their their children, I will do it.
KW: How can parents cope with the guilt and grieving that accompany a special needs diagnosis?
JP: First of all, they need to know their guilt and grief are not wrong, Those are normal emotions in the special needs parenting journey. But relentless, unending guilt is a form of spiritual warfare that sucks energy and leads to despair. So parents experiencing relentless guilt need to talk to someone about their thoughts and feelings. They need help sorting out whether their sense of guilt is founded (which is rare) or unfounded (much more likely) and deal with it accordingly.
Parents of kids with special needs have lost their original dreams for their children. They must allow themselves to grieve their losses, no matter how small. I remember feeling so guilty for crying when our son was hospitalized on his first Halloween. Why was I crying because he didn’t get to wear his little costume when I should have been thankful he was alive? But losing that holiday was a loss. It was real. And it was okay for me to cry. I have tears in my eyes now, just thinking about it.
Both of these issues are discussed in depth in Different Dream Parenting. The chapters include resources for parents and biblical perspective about guilt and grief. I think readers will find the advice given by other families and the biblical assurances are incredibly freeing for parents.
KW: Raising kids with special needs can be all-consuming. Sometimes parents feel that it defines them. How can parents move past this in order to survive…and thrive?
JP: Parents, even of typical kids, can easily fall into the trap of defining themselves by their parenting roles. That’s why many parents, moms especially, have such a hard time when their nest is empty. Their identity is so wrapped up in their kids they forget who they are. Now, multiply that several times for parents of kids with special needs, and it’s obvious why they have a hard time moving past that identity. So it’s really important for parents of kids with special needs to have some part of their life not associated with their child and care giving.
Maybe that part of life is when you’re at work. (I loved leaving our tube-fed, techo-baby with his wonderful sitter while I was at school. Teaching kept my mind so busy I couldn’t worry obsessively about our son.) Or maybe it’s two hours every Saturday morning when your spouse takes over caregiving duties and you go for a run. Or maybe it’s a friend, family member, home health care worker, or someone from church who sits with your child and gives you a break.
As the parent, you must give up a little control over your child’s life. You must allow others to partner with you in care giving – even if they do things differently than you do – and get away for a while. You are your child’s parent. You are not the God in control of their life.
KW: You are on the “other side” of many of these experiences, because you are a parent of adult kids now. Many of us who are still “in the trenches” wonder how we’ll ever make it to that stage. Any advice for building endurance (and maybe not “sweating the small stuff?”)
JP: Sometimes, I have a hard time believing how completely on the other side of special needs parenting we are. Sometimes I feel guilty (By the way, I am the queen of guilt. That particular tiara is polished and sparkling at all times.) knowing so many families will not see their children as healthy and whole as our son is. During our time in the trenches, I was also queen of sweating the small stuff. (Yes, my tiara collection in vast and stunning.) But several truths kept me from losing it completely in those days. Maybe they can help parents reading this blog, too.
1. Take things one day at a time or parenting a child with special needs can be overwhelming.
2. Find something to laugh about every day because if you don’t laugh, you’ll cry.
3. Remember God has a purpose for the gift of your child’s life. Helping your child open that gift is part of the adventure of living.
4. Remember God made you the parent of your child for a reason. Another part of the adventure of living is discovering what that purpose is.
5. God is faithful, and his story for your life and your child’s is not over. The best is yet to come, in this life and the next.
I have a copy of Different Dream Parenting to give away…want to win it? Send me an email at firstname.lastname@example.org by Thursday night at 9 pm EST. I’ll put names in a hat and draw a winner! If you want to order a copy of this book for yourself, a friend, or for your church’s library, click here...and enjoy!
Wishing you peace in your parenting~