The emotions and experiences that come with being the parent of a child with special needs are unique.
There is excitement with each milestone achieved as well as fear of what lies ahead or grief over what could have been.
Many parents feel like a passenger on the car ride of life while their child's needs become their primary focus. Juggling therapy appointments, doctor visits and work can leave little time for simple activities that most people take for granted: Celebrating the birthday of a friend or going on a shopping trip with your sister.
How do we find time in our busy schedules to focus on our own well-being? How can we network with other parents so that we don't feel alone on this journey?
Many parents who have children with special needs report feelings of stress and isolation — isolation from social events, grocery store trips, game nights with friends or holidays with family.
Some parents tend to shy away from the activities that they used to find enjoyable. But it is vital that we take advantage of these opportunities, and care for ourselves in order to effectively care for our children. When parents consider their own emotional needs, they are better equipped to nurture their children and their relationships.
Here are some ways to find much needed time to focus on self-care:
· Set aside "mom" or "dad" breaks in which you take a moment during the day to decompress. Identify a place that you feel most relaxed and retreat there when you feel it necessary. This will allow you to recharge your batteries and take on the next activity.
Often, the best resource for parents of children with special needs are other parents who have children with special needs. Identify a local parent group in your community that meets in person. Rely on this network to support you when your child has an appointment with a specialist or when you have a challenging outing to the dentist. It is comforting to know that others experience similar situations. Discuss the support systems they utilize, places they go and the groups they use to expand your own network.
· Get connected one-on-one with a parent whose child has the same diagnosis or syndrome as yours, and reach out — call, text or email. Identifying a "parent mentor" can help you prepare for what may lie ahead and they likely have great advice since they've experienced it too. Parent to Parent of Wisconsin can be a great place to start. They will connect you to a parent who can provide this type of support.
· Contact your friends and family to share your hardships and struggles. Your brother, sister or cousin may not know exactly what you are dealing with but chances are they'd love to help. They just may not know how. Be transparent with what you need from them.
· Seek out respite care so you can attend that birthday party or a friend's barbecue. Maintaining solid friendships will carry you through the difficult times and offer fun and exciting outings.
· Exercise and eat nutritious foods. By making your health a priority you will have sustained energy to care for your child. Parenting and caring for a child with special needs can be demanding. Staying in good health will help combat fatigue and stress.
· Get sleep. Your body is not meant to be on the go 24 hours a day, seven days a week. As a parent, you need to recharge and re-energize your body to take on the next day.
· Drop in at a local community center and allow your child to socialize with other children his or her age. Give yourself and your child the opportunity to participate in everyday activities that parents who do not have children with special needs experience. You might hear of a new program, new store or bakery opening up in the neighborhood, and it is, yet again, a way to create a stronger, larger, supportive network.
Parenting and navigating life with a child who has special needs can be challenging, but it can also allow you to discover a supportive network filled with parents that are on the same ride. And what a wonderful ride it can be.■
Jennifer Link is the manager of Birth to Three at St. Francis Children's Center.