Parents of kids with special needs know what it's like to live with chronic stress. Amy Baskin became one of those moms when her younger daughter was diagnosed with autism 14 years ago. As she traipsed from specialist to specialist, she noticed she looked like all the others moms in the waiting rooms: exhausted and overwhelmed. She searched for a book that would help her take care of herself while she tried to get the best help for her daughter. But she couldn’t find one. So she wrote More than a Mom: Living a Full and Balanced Life when your Child has Special Needs.
With co-author Heather Fawcett, Amy surveyed over 500 North American moms of kids with special needs, looked at research on families of kids with disabilities, and spoke to health and career experts about how mothers can hold onto their physical and mental health while navigating the demanding and often unpredictable world of child disability.
Look for a full interview with Amy in the June print issue of BLOOM. Here, we talk about why balance is critical – yet often elusive – for moms of kids with special needs, and what you can do to take the first step.
BLOOM: Why did you decide to write this book?
Amy Baskin: When I was first
BLOOM: What does research tell us about the unusual stresses that come with special-needs parenting?
Amy Baskin: We looked at old studies and the most current ones, and one thing they find over and over again is that challenging behaviour is most stressful. Physical and medical care isn’t easy, but from a stress point of view, behaviour is a huge issue. Then there are the multiple roles mothers have. Even if the mom is working full-time, she’s usually doing all the case management: booking the appointments, managing the child’s care, dealing with the school, managing behaviour, doing the emotional work. The Roeher Institute found that moms put in an average of 20 to 30 hours of personal care for their special-needs child on top of workforce and other family and household responsibilities. With that extra load comes little time for self-care. And no matter how positive we are, we all worry about what will happen in the future, when we’re no longer there for our child. So there’s too much to do, lots of stress, worries about the future and a lack of control. One study found that parents of children who are chronically ill have cellular content that is like a person 10 years older; stress ages them at a cellular level. The other big contributor to stress is that daily life in our community is designed for a typical kid. If I want to send my typical kid to camp, I phone the camp, get the information, fill out the form and away she goes. If I want to send my special-needs child to camp, it starts with: Let’s do the research. Let’s meet with the director. Let’s find a one-to-one worker. Everything we do has so many more layers to it.
BLOOM: What is the difference between coping and balance?
Amy Baskin: Moms of children with disabilities have more intensive and frequent periods of crisis. It could be your child’s medication isn’t working, or your child has become depressed, or you’re dealing with chronic behaviour. When we’re in crisis, we just cope. We need to get some sleep, to eat, and to have a friend to connect with. But there is no balance. Balance is what we do over time to maintain our physical and mental health because we know the parenting demands are greater and we’re at risk of depression. Balance is about looking after our physical health – sleeping, eating and exercise – and what makes us happy: knowing what you love to do and being able to do it, and having friendships and social connections.
BLOOM: What happens if we don’t pay attention to our own needs?
Amy Baskin: The stresses start to outweigh the joy and meaning we get from our child. We become negative and bitter. Then we have nothing left to give to our kid.
BLOOM: What did you find in moms who coped the best?
Amy Baskin: Their child with special needs was not the centre of their entire family’s life, which is really hard to achieve. Every single decision wasn’t made in light of that child with special needs. The happiest moms often had some kind of paid work. When they returned to work, their life felt more balanced and they had another world outside of their kids. Going to work was a break – a time to free their brain from thinking about their child and to get energized before coming back to the family. Moms who did best were involved in committees and groups that were changing the world to make things better for their kids. They also tended to exercise and there’s all kinds of research on how exercise can boost your energy and mental health. Moms who coped well used humour and took breaks. They went on dates with their spouses, booked child care so they didn’t feel they had to do everything themselves, and surrounded themselves with help – whether extended family, other parents of kids with special needs, or by using funding to hire university and high school students.
BLOOM: Why is it so hard for moms of kids with special needs to take time for themselves?
Amy Baskin: Guilt is a major barrier. I remember one woman at a workshop said: “I can’t even buy myself a cup of coffee because I know that money could go to my kid’s therapy.” People feel guilty leaving their child with someone else. Our society is so focused on helping the child that if a mom does something for herself, there’s a sense that she’s taking away from her child. The opposite is true. We know we have to fill ourselves up first, before we can give to our child. The better you feel physically and mentally and the happier you are, the more you’ve got to give your kids. Balance is not just a frill!
BLOOM: How can a mom take the first step in self-care when she's feeling overwhelmed and burned out?
Amy Baskin: Take baby steps. Look at one small thing you can do for your physical health each day, and add one small pleasure. With physical health, look at the biggest area of need. For example, if you're exhausted, rather than go to bed at midnight, take a bath and go to bed at 9:30. If you never exercise and feel terrible, go for a long walk today. Then add a pleasure: Get that book from the library and try that nice tea you bought and sit down and read for 10 minutes. Or call your best friend. Or do five minutes of deep breathing and visualization.