When parents learn their child has a disability, life changes. Parents report a variety of emotions, including profound sadness, anxiety and uncertainty. Many say they were devastated by the news and remember little about the days following the diagnosis.
Life can become centered on consultations with specialists, professional services, and other activities and appointments relating to the child’s disability. The responsibility of caring for a child with a disability can be exhausting. Parents of children with special needs often report fatigue and feelings of depression. Facing the loss of what they imagined their child’s future would be, parents may feel emotionally down and isolated. For the parent, caring for yourself is as important as caring for your child. Below are a few suggestions.
Understand that strong emotions are normal. Feelings of anger, disappointment, fear and guilt are typical upon learning your child has a disability. Those feelings can resurface as you go through different stages with your child. Talking with trusted family and friends is important for processing and understanding. Family members will each experience their own emotional reaction. Grandparents feel sadness for both their grandchild and the pain their child is experiencing. Siblings can feel jealous of the extra attention a child with special needs requires. Keep in mind each person has his or her own unique experience and emotional reaction.
Seek information and services. Familiarize yourself with the terminology of your child’s disability. Parents feel more confident in discussions with professionals if they are familiar with the lingo. Understanding what the doctor means when she says “a protracted course of development” is important. Find out what professionals, programs and groups are in your area or available online.
In addition to professional services, many areas offer parent groups. Some are specific to parents of a child with a certain disability while others are more general. Parent groups offer a wealth of support and information from other parents. The growth of the Internet means there are forums and online support groups for all kinds of situations. Accessing available resources helps parents feel less isolated and provides needed assistance.
Make room for other caregivers. You know your child best, but that doesn’t mean others can’t handle his or her care. Take the time to train other caregivers about your child’s required needs. Having other caregivers gives you and your child a break from each other and allows him or her to develop other relationships.
Nurture your adult relationships. Part of taking care of yourself is maintaining your relationships, both personal and professional. Caring for a special needs child can become all encompassing. It’s important to take some time to foster the parts of your life that are not about being a parent. Invite a friend over for coffee and a chat after the kids are in bed. Attend a professional luncheon, lecture or meeting.
Accept help. As simple as it sounds, accepting help from friends and family can sometimes be difficult. You hear “let me know if there’s anything I can do to help.” “Yeah, OK,” you say but never follow up on the offer. Accepting help from other people is important to manage your stress level and maintain emotional health.
Think about what things would make your life just a little easier. Help transporting kids to and from activities? Many parents are glad to help with driving children to shared activities. Dog walking? Some ready-to-heat dinners in the freezer? Lawn mowing? Chances are you have family members or neighbors who would be happy to oblige. Help with little things, like picking up the dry cleaning, can remove some stress. People want to help but don’t know what to do. Use your support system and ask for assistance.
As the parent of a child with a disability, you may feel overwhelmed at times by the responsibilities and your own emotions. Many resources are available including professional services, family and friends, other parents of children with disabilities and online support groups. Accessing these support networks is critical to maintaining a healthy family life.
Exceptional Family Resources
EFR partners with individuals with disabilities and their families, providing services, information, advocacy and other supports to enhance lives and foster community acceptance. www.contactefr.org
The Kelberman Center
The center provides programs and services for children and adults with autism spectrum disorders and their families. Specialized staff is highly trained to meet the needs of individuals with ASD and includes a pediatric neuropsychologist, psychologists, psychiatrists, social workers and educational and behavior specialists. www.kelbermancenter.org
Children’s Therapy Network
The network offers comprehensive therapy and educational services to children with special needs. Services are provided in a natural setting comfortable to the child and the caretaker. www.childrenstherapynetwork.com
Cary and Tonja Rector are married and live with their son in Manlius. Cary is a licensed mental health counselor and Tonja is a licensed marriage and family therapist.