Parenting with MS: An interview with Dr. Deborah Miller

We recently sat down with Dr. Deborah Miller of Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research to discuss parenting with MS. Here’s what she had to say:

Tell us about your role at the Mellen Center.

I am a master’s prepared social worker, which means that I have clinical experience working with individuals and families with MS. I also have a PhD in Health Services Research. I do a lot of work in developing measures that assess patients’ reactions to different interventions, as well as their responses to illness. I also develop interventions to help people better manage their MS. It’s been a wonderful combination of having the hands-on clinical experience to understand the issues people are experiencing and the ability to conduct research that will allow us to more systematically manage the issues that people with MS and their families commonly face.

Are there any common issues that you see come up with your patients related to parenting?

A lot of people are concerned that having MS will interfere with their children’s ability to have a normal childhood. People are also concerned that they won’t be able to adequately parent their children – either in terms of their ability to participate in activities or ability to discipline their children. This may be due to lack of mobility, lack of energy, or both.

Is there anything you would say to people who are concerned about whether or not they should have kids and whether their kids will be able to live a normal life?

The decision to become a parent should be carefully considered by anyone, whether you have MS or not, but there’s absolutely no reason for couples to not have children if they want them.

Before having children, it’s a good idea to think about your support system and prepare yourself for the fact that there may be times you will need them to step in and help out. It can be helpful to think about how that may look in advance, and what limits you will want to set up-front. You may also want to think about and plan for your financial future. MS is an expensive disease – you may need to plan for how you balance the cost of MS-related expenses with saving for your family’s future.

In terms of whether you kids will be able to live a normal life, there’s a good bit of evidence that children who have a parent with MS develop into healthy adults. It’s really important that they learn more by what their parents do than by what their parents are unable to do. If a parent sets a good example in terms of being adaptive and finding ways to make accommodations that keep them active and involved, it’s a great lesson for children to learn.

We’ve heard from a lot of grown children of people with MS that they gained wisdom, empathy and a sense of responsibility by helping their parents as they were growing up. Is there a way to know when you may be asking too much of your child?

Until they’re adults, children should not be involved – if at all avoidable – in their parents’ personal care, such as helping them get dressed or use the restroom. In terms of household responsibilities, I don’t think there are any particular lines you shouldn’t cross. The important thing is that kids have an opportunity to be involved in deciding what their responsibilities are at home and that their responsibilities don’t interfere with normal socialization. I find that in any family, when children are able to negotiate what responsibilities they take on, it makes them much more willing to participate.

Are there common issues or concerns you hear about from the perspective of children who have a parent with MS?

Kids – especially younger children who tend to be pretty egocentric, developmentally – can worry that they did something to cause their parent’s MS. Many women experience their first exacerbation after the birth of a child, and kids can make that temporal connection and somehow believe they were responsible.

Children also often worry that their parent is going to die. We make it a standard part of most family-related sessions that parents let their children know that most people with MS live very long lives. MS may force them to do things differently, but they will be there to love and take care of you.

As children get older, they’re often concerned that they’re going to get MS themselves.

Knowing these concerns, when should you tell your kids about MS, and how should you talk about it?

Things tend to start with, “Why can’t you do this with me?” It’s important to build openness about letting kids ask questions, and then answering the questions that they ask.

It’s also important to give MS a name, because kids’ imaginations can go worse places than MS could ever be. However, with younger children, there’s no need to go into detail about what causes the condition. I typically encourage parents of younger kids to talk in terms of symptoms. Children are focused on what they can see. Explaining the symptom you’re experiencing and tying that back to MS, can help them make sense of it.

As children get older and more sophisticated, it can help them to have information that ties different symptoms together and to see how these issues are related, so that there’s a coherent explanation for what’s going on.

Any final thoughts?

I’ve met many people who are excellent parents. The people who do best are as open as they can be with their children and spouses. Good parenting is something that’s a very active process. Setting boundaries, being consistent, rewarding good behavior, recognizing when a child isn’t doing well are important for all parents, but especially important when a parent has MS. All too often people will blame MS for problems in the family. It’s essential to look beyond the MS when things aren’t going right for other issues that may need to be addressed. And don’t be afraid to seek help when your family is struggling with an issue – a therapist can be a really valuable resource to help you through the tough times. You shouldn’t have to face the challenges alone.


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    3 Comments

  • Maria Wieand   Sep 11, 2015 2:11 PM
    Why is the healthcare.gov program so hard to use and why does it still have so many issues. My issues are this:
    Purchased United Health care on the site. Paid in full 3/26/15 for 4/1 start of coverage. Went to get meds and plan wasn't activated because lake of payment. I've been on a drug for 7 years and since it is a narcotic coming off it would cause major withdrawals. They didn't go out of heir way and I was caught in the cross fire with UHC and the market place where you buy your insurance. Paid out of pocket until health care was active $200 and when insurance finally went active 1 month later the didn't cover that drug. It get more in detail but I just wanted to say families need help understanding the program and help with getting the best coverage for their disease. I have Multiple Sclerosis and this is for a lifetime. Help me!
  • Avatar
    scotm  Sep 11, 2015 3:21 PM
    You talk of parents with MS , but what kind of MS are you referring to ? I bet you mean relapsing remitting .... Well I have progressed to Primary Progressive which I'm told there is nothing that can be done except treat the symptoms as they come ! So great how do I tell my family that they get to watch me fall apart and put me in a nursing home some day , most likely soon . Why have we not put money into treating secondary and primary forms of this monster ??????? Don't get me wrong I'm elated that there is so much help for Relapsing Remitting MS I think it's great ! But its sad that the rest of us have been left out of the fold ! Just my opinion of course .

    Scot M.
  • Anonymous   Sep 13, 2015 10:11 PM
    Sure, it is good to be upbeat. However, MS often devastates patients physically, emotionally, and financially. Even RRMS is not labeled a progressive disease for nothing. And yes, what about aggressive cases well beyond RRMS?

    The reality for countless people is that this is a vicious, unpredictable, nightmarish disease. There's no way to sugarcoat the fact that the illness seeks to destroy the central nervous system, fast or slow.

    The divorce rate is high and quality of life can be low, despite the best efforts of positive-thinking, brave patients and those who love them.