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Parenting is challenging under normal circumstances. When you have multiple sclerosis (MS), it can be overwhelming. For many parents with the chronic neuromuscular disease, raising a family while managing debilitating symptoms is a daily struggle that takes a toll on physical, mental, and emotional well-being.
“Parenting a young child is hard work. Add MS into the mix and it’s even harder. … Ugh!” shared a member of MyMSTeam. “Too tired to follow through. Forgetting rules you set. Does anyone feel their parenting skills are compromised because of MS?” asked another concerned parent.
The National Multiple Sclerosis Society (NMSS) offers reassuring words for those who worry about raising healthy, happy kids. “There’s no single correct way to be a parent; love and security can come in a variety of packages,” according to the NMSS website. “As a parent with MS, you just may need to do things a bit differently.”
The physical impact of MS on child-rearing can’t be ignored. For many parents, fatigue, weakness, blurry vision, cognitive issues, and other symptoms of multiple sclerosis can make every day an uphill climb. A 2012 survey of 145 parents with MS and their partners cited physical symptoms like fatigue among the 10 areas of difficulty in daily parenting with multiple sclerosis.
MyMSTeam members say lack of energy is their most challenging symptom. It’s harder to perform basic tasks, such as feeding, bathing, or dressing a child; driving them to school; or attending a soccer tournament or piano recital. “I've been down since my last flare two years ago and worried about my children. My youngest wishes she had her ‘old momma’ back,” shared one parent.
Parents who experience muscle weakness, coordination issues, difficulty walking, and blurred vision as MS progresses face even more challenges. “I can't lift my 2-year-old anymore. All the other kids at his day care get picked up by their parents. I don't want him to think I don't love him,” worried one member. “I’ve had to adapt many activities I used to do with my young daughters because of difficulty walking and fatigue. I used to be very physically active, so this has been heartbreaking for me,” shared another parent.
Cognitive problems that often accompany this chronic illness — such as slower thinking, memory loss, and difficulty multitasking — can disrupt daily activities and create confusion among family members. Meal planning, keeping up with play dates, helping with homework, and other parental duties often suffer when MS is in the house. “My husband yells at me for allowing things to happen and not enforcing punishments,” said one member.
Depression and other mood disorders — which affect as many as 50 percent of people with MS — can also have a profound impact on children. “Trying to take the best care of my daughters, but fear of impending doom for my young family always creeps in,” shared a worried parent.
Being a good parent with MS is hard, but not impossible. MyMSTeam members often discuss two of their greatest challenges — communicating with children about MS and getting help around the house — and how they handle them.
How to break the news or discuss MS with kids is one of the first, and most important, hurdles parents face. Some members of MyMSTeam hold off sharing the news, which can be challenging when symptoms appear. “My 5-year-old wants to know why I take breaks when her friends’ moms don't have to. I don't know how to tell her without making her scared and anxious,” said one member. “I'm sure the older one has picked up on all the doctor appointments, and me not being able to get off the couch some nights,” said another.
Other members talk about MS early on. “If you try to hide it from your kids, they may get scared seeing things they don't understand,” advised one member. “My daughter took it hard, thinking her mommy was going to die … until she got educated. Then she became my ROCK, and still is at age 28,” explained another member.
Experts say the more you openly communicate with children, the less MS becomes an issue. Children may actually be more accepting of the disease after a period of grief. “Since I’ve been totally open with my son — and his friends — all of his life, they’ve gained an understanding. My disability is almost irrelevant to them,” explained one member. “My children grew up around MS. They just accept it as part of normal life,” said another.
Teaching kids how to help around the house gives them a strong sense of responsibility and pride in learning how to do things independently, members have reported.
“Early on, I taught my children how to cook and clean,” shared one parent. “My 12-year-old son can cook the best salmon ever, hands down.” Another added, “When I couldn’t lift the baby, I showed my youngest how to change diapers.”
Children who grow up around someone with a disability often develop a greater sensitivity to other people’s needs. “My daughter makes sure I take my meds. When I was on Copaxone, she gave me my needle everyday,” said one member. “My youngest son would help put my socks and shoes on, pick up my leg to put it in the car, and help put my contacts in,” shared another.
Children also develop greater compassion. “My son is so caring, gentle, empathetic. He tries his hardest to make my day better, and he's only 11,” said one member. “MS made my kids more caring adults,” another added.
The following tips from National MS Society experts and MyMSTeam members can help you deal with other day-to-day challenges:
Be realistic about what you can do, and don’t feel guilty about it. Get groceries delivered. Don’t overpromise outings or birthday parties. And always have a plan B, such as watching movies or playing games at home. Naps also help. “Without a daytime nap, I’m too tired to run outside to the park when my kid gets home,” explained one member.
The unpredictability of MS makes it important to plan ahead and simplify chores. Prioritize daily activities and schedule them based on your energy levels. “I try to prepare meals for several days a week ahead of time, so my energy doesn’t go to that,” shared one member.
Creating schedules and routines gives children structure when life gets disrupted by MS. “I set a schedule for everything. They always eat at the same time, bathe at same time,” said one member. “I taught them to clean up toys every day, at a very young age, starting with me getting down on the floor and making a game of it,” shared another.
If you have trouble with memory, use calendars to keep the family on track and remember important dates, such as birthdays and parent-teacher meetings.
It’s hard to be a perfect parent with MS. One member shared how she stopped sweating the small stuff on bad days: “I used to let my son sleep in his clothes because I was too tired to change him into pajamas!”
Find new ways of interacting with your children that take the focus off your MS, suggests NMSS Vice President of Clinical Care Rosalind Kalb, Ph.D. One MyMSTeam member agrees: “Nothing kills a pity party quicker than a dance party with my two little girls! Mommy may be a mostly ‘upper body’ dancer these days, but it brought a smile to my face.”
Sharing challenges can bring the whole family closer, particularly as MS progresses. Include your spouse or partner and trusted family or friends who are up for the task. “As I need more help to do things, our family picks up each other’s slack,” explained one member. “My grown kids now say, ‘Mom you don’t have to worry about that! We’ll be there to help.’”
Children often cope quite well with a parent’s physical limitations, according to the National MS Society. Most — particularly those in elementary school — would rather have their parent at the soccer game in a wheelchair than not have them there at all. “My 8-year-old keeps me very active with his soccer and karate. I can't join in, but I can watch from the sidelines and cheer him in everything he does. That's how I try to control my disability,” shared one parent.
Some issues faced by older children may not be related to MS at all. “Don’t blame everything on MS,” advises Dr. Kalb. Doing so, she says, could overlook other challenges your teenager is facing in life.
It’s easy to get caught up caring for your kids and dismiss your own needs. NMSS recommends adopting a regular balanced routine of healthy eating, physical activity (based on ability), meditation, and using mobility devices to participate with your kids in recreational activities.
NMSS and other nonprofit groups offer many resources for parenting with MS, including educational newsletters and books for children and teens. Some organizations may even provide free — or affordable — services, such as housecleaning and psychological therapy.
Gratitude is a powerful healer. MyMSTeam members agree it’s important to focus on the positive. “Raising children with this disease can be hard, but either way I'm so grateful for my life and the people in it,” one member said. Some parents keep gratitude journals to remind themselves about the good things in their lives.
By joining MyMSTeam, the social network and online support group for those living with multiple sclerosis, you gain a support group more than 150,000 members strong. The daily challenges of parenting with MS are frequently discussed.
Here are some question-and-answer threads on MyMSTeam about parenting with MS:
As a parent with MS, do you feel challenged raising and caring for your children? What has helped you to successfully get through each day? Go to MyMSTeam today and share your parenting tips and experiences. You'll be surprised by just how many other members have similar stories.
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