family. Due to the higher level of stress, and the unique needs of the disabled children/youth, parents are more likely to experience marital issues, need mental health services, and are more likely to experience health issues. "Overall, parents may experience grief, isolation, and considerable stress, leading to mental health issues such as, depression and anxiety. The available evidence suggests there are barriers for parents of children with disabilities to access mental health services. (Chen et al 2023)" That is why self-care and stress prevention, where possible, is critical for the survival of parents of multiple children with disabilities.
Parents that are quick to locate support and get informed on what they can use to ensure that they engage in regular self-care, have a head start on the majority of parents of children with disabilities. Self-care goes well beyond getting a manicure or a bubble bath. As an adult supporting children with high needs, you need to find ways to feel supported, rested, and empowered. As parents, we can ensure that we have opportunities for self-care if we build com
munity connections that create what are known as, natural supports to support the family.
The Children's System of Care is a strong community support for CIPR PARENT GROUPS parentcenterhub.org/parentgroups Find my Parent Center parentcenterhub.org/find-your-center youth and families with mental health, behavioral, and Intellectual/Developmental Disabilities (I/DD) health needs. A youth can be provided a broad range of services, including: short term mobile response therapeutic support, case management with Intensive in the Community (IIC) or Intensive in Home (IIH) therapeutic support. For parents with I/DD youth, there are additional services that vary state to state, but can include respite options, community engagement, and family support services. Also, depending on your school district, there may be a variety of after school support for students with disabilities, such as clubs, sports, and therapies. For more information, consider speaking with the school social worker or your child's Case Manager.
While the school social worker and the child's case manager can be helpful resources for navigating school related concerns, parents and caregivers can also contact their Parent Training and Information Center or PTI. Each state has at least one PTI. They are tasked with performing a variety of services for children and youth with disabilities, families, professionals, and other organizations that support them. While each PTI has different programs and services, they are a great resource to find out more about who to contact in your area for assistance. Topics covered might include things like: how to sign up for insurance, Individualized Education Plan (IEP) support, workshops, 504 plans and civil rights laws that support inclusion, both within the school system and in places like childcare settings. To learn more about PTIs and to locate the one nearest to your area, visit the Center for Parent Information and Resources and select "Find My Parent Center".
PILLARS OF SUPPORT : PARENTING RESOURCES
Here are some helpful federal programs for caregivers of children with disabilities.
CIPR PARENT GROUPS
parentcenterhub.org/parentgroups
Find my Parent Center parentcenterhub.org/find-your-center
NATIONAL ASSOCIATION FOR MENTAL ILLNESS
TITLE V STATE PROGRAMS AMCHP
amchp.org/title-v-state-profiles
CHILDREN SYSTEM OF CARE
acf.hhs.gov/toolkit/resource-guides-populations-served-acf-programs
Programs funded by the Administration for Children and Families (ACF) acf.hhs.gov/sites/default/files/documents/main/resource-guide-for-families-with-chil- dren-ages-0-12.pdf
NATIONAL CENTER FOR PYRAMID MODEL INNOVATIONS
challengingbehavior.org/resources
PARENT TO PARENT USA
It is worth stressing the value that these supports can provide the individual with disabilities. Supported social activities can reduce at home behaviors and overall stress in the home. Having typical children is stressful. When you add on some of the individualized needs of persons with disabilities, it can become quite overwhelming and difficult for parents to maintain relationships, work, and lifestyle, while balancing the needs of their children. We aren’t built equipped to cope with all of these added stressors.
Many parents of children with disabilities experience a process called grief cycling. Although this is not studied heavily, it is the shared experience of both authors, and a common experience for parents of children with disabilities where the parent grieves for the hopes and dreams that they imagined for their child, before realizing their disability would put limitations on those aspirations. There can be a sense of loss when parents realize their child(ren) may have a drastically different future than the one they imagined. As your child(ren) age, so do their peers, so it is completely understandable to grieve the things your child may not experience as a result of their disability. Life transitions like: starting school, riding a bike, learning to read etc. can be very difficult, as they are built in reminders that your children's journey may be different than the future you imagined, when you realized you were having a baby. It's natural to compare them to their peers of the same age, and it can be difficult to see the differences in their achievements. It is however, important to celebrate their achievements, no matter how small they may seem. Walking at three is still walking, speaking at 8 is