Some studies report as many as one out of every four families in the U.S. has a child with a special need. Parenting is stressful even when a child doesn’t have a physical, mental or emotional difficulty. One can imagine the stress on special needs families. Laurie Wallin meets these parents right where they are in her new book, Get Your Joy Back: Banishing Resentment and Reclaiming Confidence in Your Special Needs Family (Kregel Publications/January 27, 2015/ISBN: 978-0825443398/$13.99).
Wallin strives every day to live out her message for families: that no matter the challenge, in Jesus they can have joy and confidence. Get Your Joy Back is full of biblical insights and practical strategies to help parents recognize and shed the resentments that leave them spiritually, emotionally and socially drained. Wallin sugar-coats nothing but addresses issues with honesty, humor and — above all — hope.
Q: Get Your Joy Back comes from a very personal place for you. Tell us about your family.
I’ve been married for almost 16 years to a man who’s a tech whiz with a wicked sense of humor and an Asperger’s diagnosis. That keeps us on our toes as parents of special needs kid because their challenges exacerbate his and vice versa. But the loyalty inherent in his wiring has also been an immeasurable gift and stabilizer for me as his partner in our family. We have four daughters, ranging in age from 6 to 13 years old. Two are foster/adopted with a half-dozen medical, developmental and mental health special needs. We daily attempt to balance our pre-teens’ mood disorders (as if pre-teens weren’t already moody), therapeutic appointments, communication with teachers and “normal” family stuff like sports, making meals, doing homework, brushing teeth, wiping up spills and my desire to lock myself in a closet and watch entire seasons of Downton Abbey in a single night.
Like most parents reading my book, we wanted to be parents but never sought to parent high-needs children. When we adopted our older two, the papers said the girls were healthy, rambunctious toddlers. Their special needs became apparent throughout the following two years, as did their resourcefulness, emotional depth and tendencies toward art and living-room tickling matches.
Q: What makes Get Your Joy Back stand apart from other books written to special needs parents?
It’s not about the kids. It’s about the parents — the primary caregivers, specifically. There just isn’t much out there for the people who are parents of these special kids. Our lives become about getting our kids the best possible care, and we can nearly become invisible. It effects our health, life expectancy, quality of life, relationships, careers . . . and we often feel like that’s just how it is and there’s nothing to be done about it. This book says, from a fellow parent in the trenches: “You’re still there. I see you. And you matter, beyond your role as Mom or Dad.”
Q: What did you mean when you said this book will help parents “stop the madness”?
The madness is the treadmill on which we find ourselves as parents. The “keep trying harder, keep ignoring what hurts you, keep putting off your needs, keep doing, doing, doing” treadmill. This book gives parents permission to get off that treadmill and provides the practical tools to release resentments, lower stress and replace unhealthy thought patterns with ones that restore joy in their lives and relationships.
Q: Why do special needs parents often feel so isolated?
They’re isolated by their child’s needs and schedules, as well as by misunderstandings with people they know. Every family is constrained by a 24-hour day, and even for families without a special needs child, there aren’t enough hours in the day to get everything done. However, for parents of special needs children, instead of the occasional doctor’s appointment or meeting, these families’ days are full of trips to therapists, doctors, pharmacies, meetings at the school and calls to work with insurance providers and medical suppliers.
Many of the parents I interviewed for the book have also felt judgment and misunderstanding from peers, churches and communities, such that they shy away from pursuing relationships. That was one of the primary reasons for writing this book: to invite weary parents to see a way out of the stress and isolation so they can feel whole and thrive again.
Q: Why is it so important for special needs parents to take care of their own well-being?
Airlines instruct passengers that when the cabin pressure changes and oxygen masks drop down, we’re to put on our own before helping anyone else with theirs. We lose that principle somewhere in the life-and-death, post-traumatic, stress-inducing experiences we have as parents of kids with special needs. At some point the diagnosis is made and our child’s new normal begins to form, but ours never does. We stay on high-alert forever. We know our kids depend on us, but we don’t translate that into giving ourselves permission to take care of ourselves enough to support that load.
Q: Do you have moments when you aren’t sure you can make it through the day? What gets you through?
It’s a more unusual day when I DON’T have moments like that! So, yes. How do I make it through while my teen who has bipolar disorder and learning disabilities is melting down over three math problems, and her sister needs my attention because her seizures are outrunning her medications? I do it doused in reminders of God’s grace, listening to inspiring music, the audio Bible, even spoken word slam poetry from my favorite Christian artist. (Notice the theme? Audio. I’m able to stream it while doing all the other parenting stuff, if needed.) I do it by talking to God like He’s standing there with me, complete with griping, begging, crying or whatever is needed in the moment.
I do it by getting a little more sleep on the hard days, eating balanced meals (and setting a timer if I have to, so I don’t dip too low on the blood sugars), getting into the sunshine every day, using lotions with scents that evoke calm, drinking tea and having a super-secret stash of salted dark chocolate with almonds.
I also applied to public programs for respite and money to assist in having a trained caregiver in the house who isn’t just there for my kids; she is my right arm in whatever way I need help in the house or if I just need a time out to walk a few laps around the block.
Q: You interviewed more than 70 families when writing Get Your Joy Back. What was the most common theme you heard while talking to them?
The most common response is that they felt misunderstood, by family, friends, church, professionals and even their own spouses. Being misunderstood leaves many feeling hopeless because they don’t feel sharing their needs or struggles will even matter.
Q: While you are very open about your struggles, that wasn’t the case for the majority of the parents you spoke to. Why do you think they had such a difficult time talking about their issues?
I believe it’s because as Christians we’re trained not to feel bad for too long because if we do, we either 1) don’t have enough faith, 2) didn’t pray enough or 3) must be the problem that’s bringing such trouble to our families. Somehow the unspoken doctrine, which many parents mentioned in their survey responses, is that you can struggle in church, just not too loud, too long or in ways we can’t explain away with Christian-isms.
After a while, parents get to a place where they don’t even acknowledge their hard feelings. They convince themselves they’re OK and nothing is too hard because they’ve grown accustomed to making it sound OK (read: Christian/faithful enough) to people they’ve tried to talk to before.
Q: You talk in the book about forgiving your child. Have you found that idea to be controversial in any way?
Yes, that’s bothered some people — mostly people who are still struggling with what we were just talking about. But also because the second we let ourselves say what we grieve about our child, we feel guilty for even thinking that. After all, it’s not like our child planned or asked for this or wanted to make our lives hard! We don’t realize that by censoring our emotions, we’re not being more spiritual; we’re being dishonest and short-circuiting the healing God will certainly bring when we take an honest look at the challenges.
Basically, any controversy I’ve encountered thus far hinges on the fact that typically, as westerners, we don’t understand healthy grieving. It feels so uncontrollable and so undefined . . . like a black hole. When it comes to our kids, that translates to “I don’t want to even THINK about my negative feelings about my child or her condition because then Pandora’s box might open and swallow me whole. My family needs me. I can’t take the risk to fall apart.” That kind of thinking robs us as parents of the joy on the other side of healthy grieving.
Q: What is the number-one thing you hope Get Your Joy Back does for special needs families?
I hope the book breathes joy and confidence into the deepest, weariest places in their hearts and lives and they leave it feeling recharged and hopeful in relationships at home and beyond.
To win your very own copy of Get Your Joy Back, head on over to our Facebook page to enter or simply comment below with your favorite way to get your joy back! Ends February 1, 2015 at 12:01 a.m. CST!