Written by: Beth Neu, LPCC
Raising a child with disabilities provides the opportunity to appreciate the unique joys and challenges that are inherent in the experience. The emotions of parents, family members and other caregivers are complex and can range from love, stress, grief, joy, resilience and includes the complexity of family dynamics. One of things I’ve noticed when working with parents of children with disabilities is that they often feel isolated and alone in their experiences. While they can share their excitement when a new skill is learned or goal met, it may not be the same as their peers’ experience with their more typically developing children. Relationships change when you have a child or children with disabilities because your day to day life can be very different from a family not juggling multiple therapy or doctor’s appointments, having help in the home, or navigating educational challenges. Finding support is critical and available. The Family Achievement Foundation provides opportunities for parents to come together and share their experiences through various learning opportunities.
The Impact on Family Relationships
If a parent of a child with a disability is married or has a partner, the need for open communication becomes paramount to the success of the relationship and care of the child. Approaches to caregiving may differ and the stress of caring for a disabled child can bring forward feelings from other stressful times in a parent’s life. It is important to learn about and understand your “triggers” as well as those of your partners. Using tools when communicating, like those provided by Dr. John Gottman, can ensure that when conversations happen, they are calm, respectful and successful. Besides the need for good communication, all couples need time together. There are many creative ways to set aside small amounts of time to reconnect and nurture the relationship while nurturing a child with a disability.
Sibling relationships can also be impacted by having a sibling with a disability. Again, emotions can be complex and siblings can also feel isolated from peers as their emotions may include pride, happiness, jealousy, guilt or resentment about their sibling with the disability. Acknowledging and normalizing these feelings can help siblings adjust to the challenges within the family. It’s also important to provide opportunities for siblings to have time with parents, which increases the likelihood that they will feel seen and heard, an important piece for their identity development.
Managing relationships with extended family such as grandparents, aunt, uncles, and close friends, requires providing education and setting expectations. Most family members and friends want to be helpful but often don’t know how; so, fostering inclusion is key. Misunderstandings are bound to happen and using the communication tools provided by Dr. Gottman can provide a helpful guide. This includes creating a culture where family members feel heard and understood.
The Need for Self-Care and Self-Compassion
Many parents I work with struggle to find time for self-care and often feel guilty when they take a break from caregiving responsibilities to have fun and relax. Without spending time away from caregiving, caregivers are at risk of burning out, becoming irritable, and losing the ability to find the pleasures in raising their child with a disability. There are many ways to build self-care into a schedule, especially if this includes combining time with other family members to nurture bonds and create new memories. Self-compassion includes being kind to oneself when moments of doubt, frustration or isolation creep in. Taking a moment at the end of every day and looking for the positive experiences help to build resilience. Remember to celebrate the small wins, finding joy in the journey and recognizing the strengths of your family and that finding support is possible and necessary.
Written by: Beth Neu, LPCC
Beth Neu, LPCC, is a therapist in private practice at Constellations Psychotherapy and Coaching . Beth specializes in treating trauma, supporting all parts of the adoption constellation, and supporting individuals and couples who are neurodivergent and have ADHD, autism or OCD. Contact information for Beth can be found on her website.