Single Parent of Child with Special Needs
Being a single parent is difficult. Raising a child with special needs is challenging. Now imagine combining the two and raising a child with special needs without the support and help of a partner. Taking care of a child with medical issues, developmental delays and/or physical limitations requires physical and emotional endurance that is challenging even for a team of parents. The absence of a partner can feel especially stressful because single parents of children with special needs must navigate through the maze of doctors, therapists, social services and special education programs on their own.
When a divorcing couple has a child with special needs, it can be very complex. Establishing guidelines for issues such as custody, visitation and support are critical as there is no cutoff when the child is 18; responsibilities are life-long.
Financial support does not end at age 18 because long-term support is necessary and legally mandated. States differ as to how long-term child support is determined. Eligibility for government benefits such as SSI and Medicaid need to be investigated before determining child support. Depending on the child, transitions to new situations may be very troublesome and confusing. Going between parent’s homes may result in emotional meltdowns with physical ramifications in some children with disabilities. Co- parenting with the child’s best interests as priority is paramount.
When there are other children in the family, their lives are impacted by having a sibling with special needs. Numerous variables have an influence on the viewpoint of the sibling: the severity of the sibling’s limitations, the age difference and the expectations and sensitivity of the parent. Communication with all members of the family is essential. All children should be well informed and understand the nature of their sibling’s limitations.
If the disability is a genetic issue, at the appropriate age, siblings need to have proper information to make decisions regarding their own future children. As with any family, siblings may be expected to help out with each other but in a family with a child with special needs, the burden can sometimes be too much.
Sarah, a single mother of three, including a daughter with cerebral palsy, said that her children help, but guidelines are kept clear. ”It’s part of the family responsibility to help take care of her,” she said, “but I make sure the other children know it is not their responsibility to be her sole caregiver.”
Keep the lines of communication open and allow them to openly express their feelings. Sarah said she makes sure to provide one-on-one time with each of her children, and she encourages them to discuss any feelings or problems they are experiencing in relation to having a sister with special needs. Sarah has also sought the services of a professional counselor when dealing with difficult issues.
Being a single parent with a child with special needs can be very isolating. People may believe they are offering words of comfort when they say things such as “there are reasons for everything,” “God won’t give you more than you can handle,” “Down syndrome people are always happy,” “God only gives special people special children”. These platitudes come from a place of good intentions but also from not being aware of the challenges a family such as Sarah’s faces on a daily basis.
It is essential to find support through formal support groups, parents of other children with special needs or even with online support groups. It’s vital for a single parent of a child with special needs to have at least one person who “gets it” to talk to.
It’s also important to get a break occasionally, but that can be very difficult, if not impossible, for a single parent who may lack a strong support network. Sarah just recently had her first evening out with a friend in over a year. Her main support system had been her parents, but they are deceased and her ex is minimally involved. Time with friends or alone is a hard-won rarity.
They say parenting isn’t a sprint but a marathon. When you are parenting a child with special needs, it’s more like many ultra-marathons run back to back. There are so many varieties of disabilities, each carrying its own challenges and prognosis. Public schools are required to provide education up to the age of 21, but plans must be made to continue to provide care, education and/or vocation into the child’s adulthood. As Sarah faces the impending “aging out” of the school system for her daughter, she is seeking alternatives. The Medicaid Waiver program provides approximately 12 hours of care per week for her daughter, but that’s not enough to allow Sarah to work full time. At the present time, there is a long waiting list in Oklahoma for the Medicaid Waiver program, which leaves many families without services.
Making long-term arrangements for the child with special needs weighs heavily on the mind of a single parent. Who will take care of the child after they die? Is it fair to ask siblings to provide long-term care in their homes? For some, family care is a solution, but every family dynamic is different and the extent of care the individual requires varies widely. Many parents like Sarah hope their other children will always make sure their sibling is taken care of, but have made it clear that they don’t expect the other children to provide round the clock care in their homes.
The challenges and struggles of a single parent raising a child with special needs are complex and plentiful, requiring patient navigation through an intricate system of programs and services. Despite the struggles, parenting a child with special needs, as with any child, is full of rewards. Parents describe developing a close relationship with their children, celebrating every milestone, and feeling accomplished and proud of successfully parenting alone under tough circumstances as just a few of the special aspects of parenting a special child.