Parenting Tips for Parents With MS

Whether you have one child or six, parenting is hard work. Rearing children leaves us drained and sometimes feeling guilty at the end of the day — worried that we’ve allowed our children to watch too much television, eat too much sugar, or play too many video games. If you have a chronic condition, like multiple sclerosis (MS), the exhaustion and guilt may be more profound.

Below you’ll find parenting tips that will help you deal with the exhaustion, guilt, and communicate with your children better in general.

You did not choose to have MS. There is nothing you can do to change this. You must learn to deal with this truth.

Making peace with your diagnosis will allow you to be a better parent. Whether it is seeking help from a counselor, talking with friends or family, journaling, or even taking medication to deal with your feelings, the sooner you make peace with your MS, the better.

Children are intelligent and sensitive. They can tell when you are feeling badly.

If they ask if you are feeling badly, are dealing with MS anxiety, or if you are having a flare-up, be honest with them. When your MS progresses or requires a different treatment plan, keep them informed.

Your children know you are not like other parents — this does not mean they love you any less. They will have more respect for you if you respect them enough to keep communication open.

On the flip side, they will be more likely to ask you questions about your condition or about life in general if the channels of communication are open.

Try to spend quality, one-on-one time with each of your children. Spending this time with your children will allow you to know what’s really going on with them — you’ll be better adept at monitoring their behaviors.

Depending on the age and developmental stage your child is in, they may be prone to certain behaviors. For example, the adolescent is typically prone to acting out; add in a parent who is chronically ill and this behavior can be exacerbated.

Monitoring for these behaviors may not necessarily stop them from happening, especially given your child’s age and developmental stage, but being keenly aware can certainly diffuse the situation and allow you to assist if needed.

There are resources online that may be helpful. There are many high-quality parenting websites and blogs with information on child psychology and child development stages; these are essential reads for all parents, not just parents with MS.

The websites listed in the resources section have tips for parents based on child's age, developmental stage, and various conditions, such as autism, ADHD and learning disabilities.

Audre Lorde said, “I have come to believe that caring for myself is not self-indulgent. Caring for myself is an act of survival.”

Think of this like the flight attendant discussing the oxygen mask in the event of an emergency — putting yours on first is essential.

Likewise, when we give and give to our children, we become exhausted. As parents, this is, of course, expected.

In fact, it is required — until our children reach a certain age, they need us to survive. However, this does not mean we need to neglect ourselves.

Self-care is important for every parent. However, if you suffer from MS, self-care is essential.

Self-care includes everything from getting proper rest, eating nutritious foods and getting proper exercise, to whatever it is that makes your soul happy, such as a lunch date with a friend on occasion, or an afternoon in bed with a book.

The point is this: you must be there for your children. You must be there to listen, punish, feed, bathe and soothe your children. But you must also listen to your own needs, so put your oxygen mask on first.

Your relationships are important, whether it be your significant other, your sister, or your best friend. Protect them.

You may not have the energy for a date, or a walk, or a movie, but when you’re able, pick up the phone and call.

These are your support system and they’ll be there for you when you need them. Continue to tell them how much you appreciate them. Be there for them when you can as well.

Find other parents who have MS who know what you are going through. See if there is a support group in your area. Find a posting board online.

If you can’t find other parents with MS, find other parents with chronic disease who can empathize with what you’re feeling.

Sometimes it is also helpful to follow empowering parent blogs:

• The Mighty brings together parenting, disability and disease into one powerful website.
• Advanced Child Psychology and Empowering Parents are parenting websites managed by experts and deal with child development stages, behavior, and parenting children with special conditions.
• Mom.me is a general parenting community site, but there are various blog posts dealing with tough subjects, such as moms who have breast cancer.

Please remember there is no shame in asking for help. If you are too tired or if the job seems to be too much, ask your spouse or significant other to step in.

Call your best friend or sibling and ask them to take the kids for the afternoon. Ask your mom or dad to prepare dinner. Help is out there if you just ask!

• Parenting while managing is tough work, but if you control the exhaustion, guilt, and communication with your kids, you'll be in a good place.
• You must accept your MS diagnosis and move on in order to be a better parent.
• Keep communication open with your kids and be honest with them about your condition.
• Monitor your kids and spend one-on-one time with them — having a parent with a chronic illness can cause kids to act out.
• Take care of yourself! Practise self-care and spend time on yourself.
• Ensure you nurture your relationships with your friends and family.
• Look for support from other parents with MS or with other chronic illnesses.
• Don't forget to ask for help when you need it!

Written by Krystina Ostermeyer, RN, BSN