My daughter has five life-threatening conditions and autism just to keep things interesting. I always joke about what passes for normal around here. But it is possible for parents to maintain community connections for both their family and child with their “new normal.”
Support/Belonging for Parents
Family caregivers of children with special needs may feel isolated at times. Sometimes it just helps to talk to someone who’s “been there.” Support groups are a great source of information and emotional strength for families (see Resources.) There is also the option to get an individual match with a trained volunteer parent of a child with the same condition through Parent-to-Parent. Some families may find support through their faith. It is also helpful if the children’s faith services personnel are familiar and supportive of the child’s disability. Lastly, respite is essential for family caregivers to get out on their own or with friends.
Connections for Kids
Some disability groups have support groups for children, siblings, or community experiences. In my town, the National Alliance on Mental Illness has NAMI Kids where the children go on outings to parks, museums, gardens or do arts & crafts. If a child has a meltdown, the family is surrounded by others who “get it” and won’t judge. Many disability organizations have social skills groups for kids or special needs exercise like yoga. There are also more inclusive opportunities like Best Buddies or the Council for Exceptional Children using peer mentors. Recreational activities like Special Olympics have both individual as well as inclusive opportunities. Others include Miracle League or Challenger Little League that use peer buddies. One unusual thing we found is a beauty salon (Adorn in NJ http://www.adornbeautycenterspa.com/ and http://www.thairapyhairsalon.com/in CA are the only 2 so far) that uses therapy dogs so the kids can get haircuts or nails done. Sometimes a one-to-one helper, or even a service dog, makes all the difference for children to be
able to participate successfully. For kids of transition age (16 and up), the Centers for Independent Living also have social activities.
Family caregivers need to maintain both their own relationships as well as those of their child. By doing this, they will be more included in the community and not feel so all alone.
Centers for Independent Living
Macaroni Kid - activities for all children
National Alliance on Mental Illness
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.