“I feel funny taking him to regular playgroups because he just doesn’t do what the other kids are doing. Then all the other moms start asking questions.”
“I try to talk to my family, and some of my friends are helpful but they don’t really know what to say to help me. They think I’m exaggerating.”
“It would be so great to talk to other parents who have some of the same issues I do because they might have some ideas how I could handle things better. I just want to talk to someone who’s going through the same thing!”
These are just a few of the thoughts parents of children with special needs may be having as they come to terms with a new diagnosis or work to learn how to best support their child. All parents need support to get through the ups and downs of daily life with children. Typically, people give and receive support in informal settings covertly. Casual conversations happen spontaneously among parents at playgroups or by the pool. These naturally occurring conversations help parents connect with others who have had common experiences and serve to validate one’s role as a parent. One may talk to friends and family to address problems and tackle parenting challenges. But parenting a child with developmental disabilities brings different challenges and can leave parents feeling alienated in the company of those whose children are typically developing. Many people find it difficult to seek support even when we know we need it. A parent support group may be one solution.
In a support group, people come together to share experiences, problem solve, and learn together. Participating in such a group can help parents better understand their own situation through discussion and interaction with others in a similar situation. Support groups provide a safe place for members to share feelings and increase their level of satisfaction in their daily lives and in their roles as parents. For all parents, it is all too common that the needs of children supersede their own need for self-care.
Parenting demands may be significantly higher in families of exceptional children. Children with any of the developmental diagnoses present with a wide array of symptoms which impact the daily routines and dynamics of a family. Parents find themselves trying to help their struggling children navigate an already challenging world of social interactions and lessons. Many diagnoses also bring hidden challenges such as sensory processing issues or regulatory challenges. Sensory issues can include hyper-sensitivities to sound or touch, fear of movement, and poor body awareness. Children with these kinds of challenges often have significant social difficulties, meltdowns, and inconsistent behaviors that require tremendous amounts of parental input and patience. Regulatory dysfunction, which refers to the inability to regulate one’s responses to the environment, may accompany developmental diagnoses, disrupting the most basic activities such as sleeping, eating, and playing with toys. Parents of exceptional children spend more time proportionately, taking their children to doctor’s appointments and therapy appointments, helping them with daily activities, attending school meetings and conferences, and structuring their children’s time. Seeking support is often at the bottom of parents’ lists of priorities.
Other barriers to seeking support in a group setting include but are not limited to:
- logistical challenges such as lack of time, child care, and transportation,
- personal fears and insecurities about talking in a group, showing weakness/feeling vulnerable, or feeling like a failure,
- reluctance to change or to hear the stories of others. If parents can overcome these barriers, a group setting can be an extremely effective way to seek and receive the support they need.
Parents attending a support group come for many reasons…
- to problem solve specific questions/concerns with other parents who may have already dealt with the same issues successfully. For example, homework, potty training, mealtime, school, sleep, friendships, behaviors.
- to problem solve specific questions/concerns with other parents who may have already dealt with the same issues successfully. For example, homework, potty training, mealtime, school, sleep, friendships, behaviors.
- to validate feelings, such as isolation, anger, being overwhelmed or frustrated, fear, disappointment, pride, or hope.
- to seek education regarding specific areas of interest or to better understand available treatment options, such as daily activities and life skills, sensory processing, motor development, handwriting, social skills, nutrition, vision, medication;
- to promote self-advocacy and to build coalitions around a specific cause.
To find a support group, you can look at calendar postings in local papers or at the public library. If your child has a specific diagnosis, you can find information by searching the internet. Contact disability advocacy groups in your area and ask if they know of support groups you could attend. Ask the guidance counselor at your local elementary school or call your local Health Department. If you think a support group could help you, be persistent and keep looking until you find one that seems right for you and go try it. If you are not comfortable, consider trying one more time just to be sure. If you are already sure it is not the right place for you, do not give up. Keep looking around and try another one. Finding the right group is a little like finding a really comfortable pair of shoes-it’s really worth the effort to get it right. All children have challenges and all parents do too. But…with support from the right group, parents can become better-equipped to help themselves and their children meet challenges head-on!