As a parent or caregiver of children with special needs, when you first hear your child’s diagnosis you enter a new realm of emotions, concerns, and experiences. Having a supportive peer or talking with someone who has had a similar experience is crucial to the well-being of both the parent/caregiver and the child. We are better equipped to care for the many needs of our children when we have the right tools in place, and emotional support is essential in our toolkit.
A peer can take many vital roles such as providing family support, promoting family-to-professional partnerships, and providing links to and knowledge of community resources. A child may have major needs in relation to behavioral issues, anxiety, depression, lack of social awareness, sensory processing, medical complications, medications, medical equipment, and many other factors. Managing these conditions can be confusing and exhausting. One condition may set off another condition and we can feel as though we are lost or not making progress, but a peer who shares our experience as parent or caregiver understands the realities of a condition, whether newly diagnosed or an accepted way of life. It is important for a supporting peer to be encouraging. This person can help us feel confident in our caring ability as well as help us learn how to take time for self.
As much as we love our children, frustrations are inevitable. We can feel frustrated with behaviors, with minimal time, with family life, medical care, or school. As we confront these issues, we may be tempted to project our frustrations onto other people. Parent peers have experience with all of these feelings and can both validate how we feel, and help us learn to become “nicely assertive” in our interactions with others. Parent peers have usually had to jump through a few hoops themselves to help their own children and can offer support in overcoming barriers, and as you gain experience with your child, you will become a supportive peer to the other parents around you.
Some of these support groups cover a broad range of special needs and are very inclusive while others cater to a specific diagnosis. These support groups come in a variety of mediums including: Web-based support (Facebook groups, blogs, and other websites), local support group meetings, school system support, and assistance with applying for state/federal services such as Medicaid.
Finding a support group that fits your needs as a parent or caregiver can be tricky at first, but as you embark on your search, your network of support can grow quickly. Begin with word-of-mouth, asking your health care team, your school team, and therapists. Other parents of children with special needs are another great resource when looking for local support groups. The explosion of social media platforms means that many support groups have become more searchable, more accessible, and easier to find. Try various searches online, using keywords that include a diagnosis and/or a geographical region to find local groups. Statewide non-profit organizations that serve a broad special needs population can help you find localized support. Look up your state Parent Training and Information Center, Family Voices, and/or Parent-to-Parent organization.
As you begin your search for support, it is not uncommon to feel a bit desperate to find help. Unfortunately, there are some groups which prey on the needs of families willing to try anything. Make sure to remain cautious, and to ask important questions as you build your community. Many viable support groups have built credibility within a community. Ask other parents in the community or your doctor if a support group is legitimate and a good fit for you and your family.
Support groups should do just that: support. They should never be competitive or tear you down emotionally. They should help build a network of supportive peers and/or resources that will help your family succeed at caring for your child with special needs.
It is free to attend most support groups. Occasionally, some organizations ask for a membership contribution, which is usually tax-deductible. Organizations that do ask for any money, not even for membership fees, should be registered as 501c3 non-profit organizations. If you come across a group that mandates fees or tries to sell merchandise, you may want to strongly consider selecting a different support group.
Be cautious, ask questions, and share basic care information for your child. Never share credit card information or bank account information in order to participate in a support group. Support groups should never ask for any personal information such as your Social Security number or Medicaid or insurance information.
Some support groups require that members volunteer in some capacity, while others simply request it. Most often, volunteering is a choice, but your time and talents can provide viable resources to help your chosen support groups thrive. Volunteering can help you and other parents build leadership skills and group sustainability.
Support groups should specify to whom their support is tailored. Some groups serve a specific geographic region of people, a specific diagnosis, or a broad range of diagnoses. Groups may either be a group of people meeting to talk, connect, and share information, or their meetings may include specific topics with more formal presenters. Watch for specific topics which interest you, and once you’ve joined a group, you might suggest discussion or presentation topics that would benefit the group.
Occasionally, a support group that serves a specific diagnosis will join with another group if they feel a topic would benefit a large portion of their attendees. Be patient if that topic is not what you need at the time and wait for the next relevant topic. Other informal support groups may just meet for lunch on a consistent day of the month. There are various ways that parents support parents, and you need to find what is most comfortable for your personality and life.
Many support groups allow children to attend, but parents and caregivers should be sensitive to how each group is set up. It would be wonderful if childcare were provided during every support group meeting, yet many groups do not have the means to provide this. If childcare is provided, make sure that you are comfortable with qualified individuals caring for your children during the meeting, and that at least two adults are present with the children at all times. Not only do multiple caregivers mean there’s more care for your child, it is also a form of accountability that protects children from abuse and caregiving adults from accusations.
Once you select a support group and begin to participate, be sure to show respect and gratitude for the support offered, and expect to receive the same. Many support group leaders keep their groups going by volunteering their own time, resources, and money. It is important to remember that sometimes things are done differently from how you might imagine, but be patient and get to know the group. If it’s the right group for you, you too can assist others and share your talents and knowledge.