Get More Help in Utah
Support Groups
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A parent or caregiver of children with special needs has a lot of new
feelings and things to learn about. Talking with someone who has "been there" can be
very helpful. We are more prepared to care for the many needs of our children when
we have the right tools in place, and help from others is vital for learning and
coping. This page will discuss the benefits and types of support groups, how to find
them, and what to look for when considering joining a group.
Benefits of Support Groups
A peer can help with many important roles such as giving family support,
teaching family-to-professional partnerships, and providing links to
support.
A child may have:
- Behavioral issues
- Anxiety, depression
- Lack of social skills
- Sensory processing disorder
- Medical complications
- Medications, medical equipment
- Pain management
- Other factors
Taking care of your child’s health can be hard. You can feel like you are
alone or not making progress. Having someone to talk to who knows the reality of
special needs can make you feel like you are not alone. Other parents and caregivers
have many of the same feelings and trials as you do, but they can help you feel
confident in your abilities and help you learn to take time for yourself.
Another challenge you may have is frustration with things related to your
child’s disability. Whether it be school issues, medical care, insurance, behavioral
concerns or even having the time to meet all of these needs, having someone to talk
to is important. This is a time to think about seeking support. Another parent
usually has experience with some or all of these things and can help us validate how
we feel. After a while, you may be that supportive parent for someone else.
Types of Support
Some support groups cover a broad range of special needs and some are for
just one diagnosis. Support groups may be:
- Social Media (Facebook groups, blogs, websites)
- Local meetings
- School groups
- Work groups
Finding Support
Finding a support group that fits your needs can be tricky. As you search
for support, you might feel desperate to find help. Make sure to find groups that
have a good reputation. Start by word-of-mouth, asking your health care team and
your school team. Other parents of children with special needs are a great help when
looking for local support groups. Social media has made groups easy to find. Try
searching online, using keywords like a condition and/or the state you live.
Statewide non-profit organizations that serve people with disabilities can help you
find support near you. Look up your state's Find Your Parent Center, Family Voices (FVAO) or Health Information(F2F) Center,
and/or Parent-to-Parent Network.
Most support groups are free but sometimes there is a fee involved. If you
do pay a fee, ask to see if it is tax deductible. Support groups should never ask
for any personal information such as your Social Security number or Medicaid or
insurance information.
What to Look for When Selecting Support Groups
Support groups should do just that--support:
- They should help build a network of peers and/or resources that will help support your family in caring for your child with special needs.
- They should be free or low cost to attend. If they ask for donations, they should be a 501c3 non-profit organization.
- Some support groups request that members volunteer in some way. Most often, volunteering is a choice, but your time and talents can help your support group. Volunteering can also help you and other parents build leadership skills and group sustainability.
- Support groups should be specific about who the support is intended for. Groups can serve a specific group of people, a specific diagnosis, or a broad range of diagnoses.
- Groups may either meet to talk and share, or they could have certain topics that have to do with the diagnosis/type or support.
- Some meetings may have childcare or allow children to attend. Check with your group.
- Many support groups have built credibility in the 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.
There are various ways that people find support, so try to find what is
most comfortable for your personality and life.
Resources
Information & Support
For Parents and Patients
Parent Training and Information Centers (PTI)
Provide training and information to parents of infants, toddlers, children, and youth with disabilities and to people who
work with parents to enable them to participate more fully and effectively with professionals in meeting the educational needs
of their children with disabilities. See the link for Download a List of Parent Centers across the USA to find the parent
center in your state; U.S. Department of Education.
Family Voices (FVAO) or Health Information(F2F) Center
Family-to-Family Health Information Centers are nonprofit, family-staffed organizations that assist families of children and
youth with special health care needs (CYSHCN). Locate state-based F2F HICs, providing support, information, resources, and
training.