Caring for a child with Smith-Magenis Syndrome most likely will be the most challenging and rewarding job you will ever have. You might feel as if you are the only person who can do the job and doubt that anyone else could meet your child’s needs the way you can. There is only so much you can give before you will begin to feel mentally, emotionally and physically drained. It is a necessity – not a luxury–to find the support you will need to care for you and your family. Remember, you are only human and it is important to take care of yourself physically and emotionally.

Tips for Caregivers

• Put Yourself on the To Do List/Take Care of Yourself – You cannot pour from an empty cup. To be there fully for your child with SMS and your family, you must take proper time to focus on yourself and the things that bring you joy and calm.
• Getting Enough Sleep – This is not an easy task with an SMS individual living in the house. Explore ways to catch up on missed sleep. Nap whenever possible. Share nighttime duty. Explore overnight respite services.
• Understand That You Have Power – It is true, there are some things you cannot control, but there are many that you can. Remember the things you have the ability to affect, including your child’s medical and professional team.  Speaking up and advocating for your child can empower you and give you the confidence to be a better parent.
• Develop a Support Network/Be Informed – It is important that you take time to understand and process Smith-Magenis Syndrome and its implications for your child and for your family. It is equally important that you are not afraid to ask questions and allow yourself to seek honest and accurate information from a variety of sources. Connecting with other families of children with SMS can be an eye-opening and beneficial experience. PRISMS offers many opportunities and venues to reach out to other parents. Support may also be found through your church, local developmental disability services agency as well as friends and family members. Invite them to share your journey as an SMS caregiver. You cannot do this alone.
• Get Physical – Research shows that exercise can lower stress, cause you to be less anxious and improve your overall mood. Walking or other aerobic activity just three times a week for 30 minutes can make a huge difference in your life.
• Keep a Positive Outlook – Seeing the cup as half-full instead of half-empty can help. Your child, like all children, is never done growing and developing. Along the road, there will be challenges and hurdles to overcome, but there will also be victories. Celebrate each success and take time to acknowledge the accomplishments.
• Take Time for Your Other Relationships – Your child with SMS will thrive when your other relationships thrive. Remember to take time for one-on-one activities with your significant other, typically-abled children and friends.

Marriage Care

Couples raising children with SMS face distinctive challenges. It is important that you take regular time to care for your marriage through open communication and attention. While every couple is unique, there are some common issues (see below) that couples raising children with disabilities face. Discussing them openly can be helpful.

• Imbalance in Caretaking – You may find that one parent feels as though they are shouldering the full burden of care for their child with SMS. The other parent may feel that they have lost their partner to full-time parenthood. Openly discuss this imbalance and work to create steps for both parents to find a more cohesive balance in sharing responsibilities.
• Feelings of Isolation – You may find that since the diagnosis you and your partner have begun withdrawing from each other. This is a common reaction when feeling overwhelmed. It is important to recognize if you begin to feel yourself withdrawing; discuss with your partner ways in which you can increase intimacy and connectedness with one another.
• Anger – It can be difficult to adjust to your child’s diagnosis with SMS. You or your partner may feel guilt, denial or even anger. This can be especially difficult if one of you accepts the diagnosis and the other does not. It is all right to have different perspectives and to work through the diagnosis differently. It is important to remain respectful of one another and communicate where you are emotionally.

Respite

There will be times when you feel like you cannot go on. Taking care of yourself has to be a priority. Just like on an airplane when you are instructed to put on an oxygen mask before helping another, you are responsible for taking care of yourself before you can care for someone else. Respite is a little time off from the round-the-clock responsibilities of your life. Scheduling a regular weekly break can help reduce stress, depression and exhaustion, and give you renewed energy to keep going.

Sometimes raising a child with SMS can be more than one individual can handle. You are going to need the help of friends and family or other caregivers, especially if you are a single parent. Do not be afraid to share your story with those around you and invite them to join you on this difficult journey. Respite can and should be a regularly scheduled part of your week. It may also be a “date night” for you and your spouse or a special time for you and a sibling of the child with SMS. Respite can be just a few hours or as much as a week. You can also access emergency respite care in a crisis.

So where do you find respite and how do you pay for it? You may be lucky enough to have a grandparent or friend who is willing to step in on a regular basis. Because of your child’s special needs and often challenging behaviors, hiring a typical babysitter is not always an option. Caregivers often need specific training to take care of an individual with SMS. A good place to start is through your local or state developmental disability agency to seek funding and resources.

This article was an excerpt from PRISMS Guidebook for Familes Newly Diagnosed with Smith-Magenis Syndrome. To view the guidebook in its entirety and view other PRISMS resources, click here.