Parenting is hard, bringing risks and rewards, struggles and highlights. This is no different for a parent who has a child with a disability. Yet parents of special needs children also experience increased isolation and loneliness, additional roles of warrior and advocate, and increased fears about the future, and ones’ own mortality.
The experiences of loneliness and isolation come from both internal and external factors. From the outside, other parents may steer clear, unsure how to handle the behavioral demands of your child, or some of the looks that strangers may give. Accessibility may be a factor. Your child may have different abilities than his or her same aged peers, making appropriate play dates difficult to establish. Internally, you may withdraw, wanting to protect yourself and your little one from others’ scrutiny and the chance of rejection. You may draw comparisons between your child and other children, and any chance for adult-only recreation is complicated by the need to find an understanding and appropriately trained sitter.
Your child’s needs may bring a host of medical and mental health professionals, school specialists and consultants. In addition to being a parent, you must also shoulder the role of liaison between all professionals, expert on your child’s needs and condition, and advocate for the rights your child has at school and in the community. This can bring with it the experience of “battle fatigue.” And that isn’t even to mention the financial burden, the fights and need to prove your family’s needs to insurance and outside professionals, and the time that is taken away from your other needs that is spent on repetitive battles from people who just don’t “get it.”
While all parents experience wonder and fear about the future that will be left to their child, a parent of a child with special needs has the additional concern of planning for the child’s needs, into adulthood, when services seem to “fall off a cliff,” and through ones’ own lifespan, for a dependent who may outlive their parents and their ability to provide care. Additionally, concerns about sibling supports, and legal implications such as guardianship and powers of attorney come into play.
Parents of children who have disabilities need support. Research regarding support groups find that parent support groups are “very helpful,” with “very satisfactory” support provided to support group members. Parents learn from other parents who have “been there, done that” in terms of school supports, professionals, and strategies. There is an inherent understanding from people who have walked in your shoes, fellow parents who walk alongside you, rather than coming from a hierarchical or professional role. You may also find that these are the parents who have children that your children can relate to, fostering potential friendships and social opportunities. There is also the ability to provide support and wisdom to others, knowing that your experiences are meaningful and helpful to others like you.
Our parent support groups are open to parents of children who have emotional, behavioral, social, or developmental differences. We provide a safe space for parents to connect with others who get it. For a complimentary intake, or more information, visit our website at upsidetherapy.com.