Much like expectant parents, grandparents-to-be often assume that the baby they so eagerly await will be healthy and free of any significant challenges. When that turns out not to be the case – when a grandchild is diagnosed with a disability or injury – it can be very distressing. Grandparents may also feel confused about their role in caring for the child and supporting the immediate family. Here, we list a few resources that may help the grandparents of children with disabilities feel less overwhelmed:
Support Groups for Grandparents with Special Needs Grandchildren
There are countless support groups for people with disabilities, as well as their parents, primary caretakers, and loved ones. Even if a given support group isn’t specifically tailored to grandparents, many of these groups welcome them. Some examples include:
Pacer Center Grandparent to Grandparent Program: The Pacer Center is located in Bloomington, Minnesota. They offer in-person support groups, as well as a phone support program in which volunteer grandparents help other grandparents process their emotions surrounding new diagnoses or difficult challenges.
The Arc Family Support: The Arc is a national nonprofit that serves people with intellectual and developmental disabilities and their families. They can refer grandparents and other family members to support groups in their area.
Guides to Forming Your Own Support Group: If you’re a grandparent whose grandchild was recently diagnosed with cerebral palsy or another disability, you may not be able to find suitable support groups in your area. If you don’t like the idea of seeking support over the phone or in online groups, you may benefit from starting your own support group. This guide from the Community Tool Box gives some helpful tips on how to start peer support groups. The Grandparent Autism Network also offers useful advice that is a more specific to grandparents of children with disabilities.
The Compassionate Friends Grief Support Groups: If a grandchild passes away, their grandparents may find some comfort in attending a grief support group. The Compassionate Friends offers an Online Support Community, as well as in-person groups all over the United States. They have no religious affiliation, although groups may meet in churches or other religious buildings when convenient.
Blogs, Open Letters, and Articles
There are many interesting blog posts, open letters, and articles about grandparenting children with disabilities. A few include:
Different Dream’s Special Needs Grandparenting Series: The Different Dream blog is run by a mother of a child with special needs. In this series, she focuses specifically on special needs grandparenting.
How to Grandparent a Special Needs Child: This is an open letter written by a mother whose son had just been diagnosed with autism. She discusses how her parents can best support her as she adjusts to his diagnosis.
An Open Letter to Grandparents of Kids with Special Needs: This is another open letter, also written by a mother of children with special needs.
NY Metro Parent – Grandparents and Children with Special Needs: This article from NY Metro Parent discusses how parents of children with disabilities might benefit from grandparent support, as well as tips for coping when grandparents refuse to be involved.
Every Star Is Different – To Grandparents of Special Needs Children: This mother discusses how grandparents can form more positive relationships with their adult children (the parents of children with disabilities), which they can then parlay into lasting bonds with their grandchildren.
Medical Information on Birth Injury and Childhood Disability
Grandparents may have an easier time coping with a specific diagnosis once they have a better sense of what it means. One way to do this is by asking the child’s parents if they feel comfortable with you getting involved, perhaps by attending some doctor’s appointments. You may also want to look at online medical resources. Keep in mind that many conditions, such as cerebral palsy, are highly variable. For example, some children with cerebral palsy have serious physical and cognitive impairments, while others have only very minor motor control issues. Therefore, these resources should be approached as sources of general information and not as exact predictions of your grandchild’s future.
UpToDate: UpToDate synthesizes information from many peer-reviewed publications into shorter, easier to digest pages.
MedlinePlus: MedlinePlus is run by the National Health Institute’s U.S. National Library of Medicine. It includes informational pages on a wide array of health topics, drugs, and supplements. They also have a variety of videos and educational tools.
Center for Disease Control: The Center for Disease Control (CDC) website is run by the U.S. Department of Health and Human Services. They provide information on various conditions, healthy living, safe travel, emergency preparedness, and more.
Disability Rights Information
To make sure their grandchildren’s rights are being protected, grandparents might want to inform themselves on disability rights. Here are a few useful organizations and pages to check out.
American Civil Liberties Union (ACLU): The ACLU fights for the rights of all Americans, including people with disabilities. Their website provides educational resources on disability rights laws and current issues.
Disability Rights Education and Defense Fund (DREDF): This page from the DREDF website gives an overview of the three main federal laws protecting people with disabilities: Section 504 of the Rehabilitation Act, the Individuals with Disabilities Education Act (IDEA), and the Americans with Disabilities Act (ADA).
U.S. Disability Rights Advances and Setbacks: 2017 Year in Review: This blog post from our site details some recent legislative changes and discusses how they could impact people with disabilities.
What Is a Patient’s Bill of Rights? Some children with disabilities spend substantial amounts of time in and out of hospitals and other medical facilities. Therefore, it is important to have an understanding of patient rights and what constitutes high-quality care. Our post gives a concise overview of these topics.
Individualized Education Plans: Individualized education plans (IEPs) are documents that detail what a child is entitled to in terms of special education. Our page on this topic describes the purpose of IEPs, how they are created, and what sorts of services they guarantee. Although this page was written with parents and primary caretakers in mind, it may also be of interest to grandparents who want to help their adult children and grandchildren navigate the special education system.
Financial Information for Grandparents of Special Needs Children
Grandparents with disabled grandchildren may wish to financially support their grandkids. To learn more about how to obtain financial help for children with disabilities, check out the following resources:
Financial Information for Families of Children with Disabilities: This page provides links to information on health insurance, income and tax help, and how to afford therapy and special education services.
7 Tips for Special Needs Planning: This guest post on our site was written by Kacy Seitz, a financial advisor for Northwestern Mutual. Kacy, the mother of a child with hypoxic-ischemic encephalopathy (HIE), specializes in special needs financial planning and promotes education and understanding of special needs finances.
Special Needs Alliance – Planning for Multiple Generations: This newsletter from the Special Needs Alliance includes some information on financial planning that takes into account both the needs of children with disabilities and those of older family members who might need to plan for their own future care costs.
MassMutual – Financial Planning Tips for Your Grandchildren with Special Needs: This document may be of use to grandparents who are financially able to give monetary gifts to their grandchildren. It offers advice on how to do this without interfering with government benefits, which is an issue with certain types of trusts.
Resources for Grandparents Raising Grandchildren with Disabilities
While some grandparents of children with disabilities play a helping role, others become their grandchildren’s primary caretakers, either temporarily or permanently. Here are a few resources that may be of use to grandparents who are raising their special needs grandchildren:
Caring for Grandchildren with Learning or Attention Issues: This page from Understood.org has advice for grandparents who are caregivers or guardians of children with learning and attention issues.
AARP Guide for GrandFamilies: The American Association for Retired Persons (AARP) offers this useful guide to caring for grandchildren. It includes a lot of practical advice on necessary documentation and safety plans, as well as support services and groups.
HelpGuide: This page offers some general information and advice about “The Rewards and Challenges of Parenting the Second Time Around.” It is focused on emotions and mental health.
If you are a special needs grandparent and can think of any resources or advice that may be of use to others, please let us know in the comments!
For more disability resources in the State of Michigan, check out our Michigan Cerebral Palsy Resource Guide. Some of the resources are specific to cerebral palsy, but many offer services to support parents and grandparents of children with a variety of conditions. It also includes a variety of fun, accessible activities that grandparents could do with their grandchildren.