How can I connect with other parents and organizations to get support?
One of the joys of parenting is being with other parents and sharing ideas, tips, and moral support. But finding support for parents with a child with a disability can be hard, and you can feel isolated and alone. But you don’t have to be alone! There are many other parents out there who have been through the same things and are happy to share what they know.
Connecting with other parents and caregivers of kids with disabilities can give you moral support and a sense of hope. It can also help you learn some tips and tricks for managing your child’s needs and services. Potty training for an autistic toddler? Ideas for setting behavior goals on an IEP? People to call about jobs for teens with disabilities? Someone out there has great advice on these topics!
There are also organizations whose goal is finding support for parents with children with disabilities. These exist in every state and have people who know your local area’s school systems, resources and regulations. These places can usually connect you with other parents as well.
Here are some ways to connect with support organizations and other parents:
Your State’s Parent Training and Information Center (PTIC)
There are federally funded PTICs in each state. Their purpose is to support families of kids with disabilities and help you advocate for your child’s needs. They offer parent trainings, support groups, resources, and individual help from other parents. Many can pair you with a parent of a child with similar needs.
Your school district’s Special Education Parent Advisory Council (SEPAC)
SEPAC’s are parent groups that every school district is required by law to have. (Some have slightly different names). Use the SEPAC as a resource and support network. Other parents from your local district can help you learn about the special ed process, and share resources.
To find your SEPAC, start from your school district’s website, and search from there. Or ask your child’s teacher or principal for the SEPAC contact info.
Facebook support groups
There are many Facebook groups for parents of children with disabilities. Ask people you know for recommendations or search online. You may want one that focuses on something specific that relates to your child, or a more general one.
If you have an autistic child, we suggest making sure that the group includes autistic adults who can share their perspectives, not only non-autistic parents of autistic children. (Why does listening to autistic adults matter?) One way to do this is to search for the hashtag #ActuallyAutistic. Also, steer clear of groups that discuss autism as something to be “fixed” and those that share false claims about vaccines and autism.
Here are some organizations that could help with your search for a community to learn from:
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Louisiana:
Exceptional Lives – Louisiana Facebook Group
Massachusetts:
Exceptional Lives – Massachusetts Facebook Group
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Blogs by Parents of Children with Disabilities
While blogs do not have the back-and-forth communication that you get with support groups, they are a good way to hear about other families’ experiences, and they show you that you’re not alone. You can also learn important information.
You can search online for blogs about something more specific that relates to your child, but try Exceptional Lives’ Perspectives 4 Parents: Advice and Support from Parents and Caregivers
Special Education Advocates
If you need help advocating for your child in the school system, you can consider a Special Education advocate. This is an experienced professional who helps families work with their schools and manage their child’s Special Education. These advocates can help you to stand up for your child’s needs in the IEP process. They may even be able to go with you to the IEP meeting to make sure you understand what the team is proposing, and that your voice is heard.
Some advocates are parents who have gone through the Special Education system. Some are former Special Education teachers.
There is no official certification for advocates, but a good one will have done some training with an organization like the state’s Parent Training and Information Center (PTIC) or Disability Rights Center. They are trained to help negotiate and to know when to refer you to a lawyer. (Learn more about finding legal help.)
A good advocate:
- Is well-trained and knows the law
- Understands disabilities
- Understands your school system
- Takes time to know your child
- Empowers you
- Acts professionally
How to find a Special Education Advocate
If you want to talk to an advocate, ask your school district contact or your PTIC to put you in touch with one. You can also use databases from COPAA and Wrightslaw to find advocates near you. (Exceptional Lives does not endorse the providers listed on these databases.)
Make sure to ask about cost. Some advocates work for free or on a sliding scale, others charge a fee.
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Louisiana:
Places to contact for parent support in Louisiana:
- Louisiana Parent Training and Information Center (LaPTIC)
- Your local Families Helping Families.
- Look up local parent support groups in Exceptional Lives’ Disability Service Finder. (en español)
- Exceptional Lives’ Louisiana Facebook Group
Massachusetts:
Places to contact for parent support in Massachusetts:
- Family TIES of Massachusetts
- Look up local parent support groups in Exceptional Lives’ Disability Service Finder. (en español)
- List of advocates from the Special Needs Advocacy Network (SPAN).
- The Federation for Children with Special Needs. Ask to speak to an Information Specialist. The Federation provides training for advocates in your local area. Their number is 1-800-331-0688 (toll-free) or 617-236-7210
- Exceptional Lives – Massachusetts Facebook Group
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Before you hire an advocate:
- Make sure they are experienced, know about your child’s school district and disability, and that they take the time to get to know your family
- Ask about their fees.
- Ask for references from other families they have worked with
- Ask for a written agreement outlining their responsibilities and fees
Tell your IEP team in advance if you plan to bring an advocate to the meeting.
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Louisiana:
Look up local parent support groups in Exceptional Lives’ Disability Service Finder. (en español)
Exceptional Lives’ Louisiana Facebook Group
Louisiana Parent Training and Information Center (LaPTIC)
Massachusetts:
Look up local parent support groups in Exceptional Lives’ Disability Service Finder. (en español)
Exceptional Lives’ Massachusetts Facebook Group
Family TIES of Massachusetts (PTIC)
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Finding support for parents with a child with disabilities is not hard, and can be a huge help to you! Taking care of your own emotional needs will help you take better care of your child. Remember, we have to put on our own oxygen masks first!
