PARENTING IS NEVER easy. Given the complexities of MS and its treatment, you may find yourself struggling more than usual to figure out how best to help your child. The first step in taking of your child is taking care of yourself. Just as the flight attendant instructs you to put on your own oxygen mask before helping anyone with you who requires assistance, your ability to support your child's adaptation to MS will depend on your own level of health and well-being.
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| Parenting Kids With Multiple Sclerosis Symptoms |
Dealing with your feelings about this unexpected diagnosis is a good place to start. Common feelings among parents who have a child with MS include anxiety, grief, anger, and even guilt. The guilt is most often related to parents' concerns that they might have caused the disease to happen, or somehow failed to keep it from happening. While there is much that is still unknown about MS, we do know that there is nothing that you or your child did to make this happen.
MS is thought to be an immune-mediated disease that is triggered by some viral or bacterial agent in the environment, in people who have a genetic predisposition to respond to it. The risk of developing MS in the general population is about 1 in 750. The level of risk rises - to approximately 1 in 40 - for any individual who has a close relative with the disease, and is higher still in families in which several people have MS.
The sadness is related primarily to feelings of loss. Every parent wants his or her children to be healthy and happy, and every parent works hard to make it so. No one wants a child to have to live with a chronic illness, deal with uncomfortable symptoms, cope with impairments of any kind, or be limited in the things he or she can do or enjoy.
Parents are saddened by their inability to prevent these things from happening, and find it difficult to watch their children having to deal with these issues. The good news is that the medical community has learned a great deal over the past 10-15 years about how to manage the disease and reduce its impact on everyday life.
The unpredictability of MS makes parents feel anxious and as well. Moms and dads want to know what is going to happen next, and what is going to happen in the future, and they may feel very frustrated when no one can give them answers. The normal questions that all parents have - will my child have a good life ... get a good education ... find a good job ... get married ... have children ... be happy ... be healthy ... are magnified when a child has MS. Anxiety and anger are also normal responses to feeling out of control, and unpredictability and unanswered questions always make people feel less in control. Because of the unpredictability of MS, the lack of clarity concerning the diagnosis, and the limited numbers of children with this disease on which to base predictions and recommendations, parents do not have a clear road map to tell them what to do.
The best way to deal with these kinds of uncomfortable feelings is to recognize what they are and where they come from, and develop coping strategies that feel right for you. The first step is to find healthcare providers with whom you and your child feel comfortable and confident. While no one has all the answers, you will find that being able to communicate openly about the diagnostic issues and the treatment options will go a long way toward helping you feel a bit more in control of the situation.
As your youngster grows and approaches different developmental milestones (e.g., entering the teenage years, preparing to leave home, etc.), the healthcare team will be able to help you and your child make the necessary transitions.
Some people also need to find others with whom to discuss their feelings - a dose friend, a National MS Society staff member, a support group, or a counselor; others find that exercise or meditation or an engaging hobby help them maintain a sense of balance and reduce the stress. The particular method you choose does not matter; what matters is that you take care of your own emotional needs so that you are better able to help your child and engage in the kind of creative problem-solving that is likely to be required along the way.
If you and your spouse or partner are having difficulty communicating about your respective feelings, or find that your coping strategies differ to the extent that it causes conflict, a family counselor who is familiar with MS can be a helpful resource. You can ask your chapter of the National MS Society for a list of therapists in your area who are familiar with MS. To find out more, you can check out Parenting Kids With Multiple Sclerosis Symptoms.