The Stress of It
Parenting Children with Special Needs
Stress is something most parents experience, but the stress of raising a child with special needs increases. Three important studies have sobering conclusions:
– A 2009 study found that mothers of adolescents and adults with autism had stress levels comparable to soldiers in combat and others who experience chronic stress.
– A USF study found that mothers who had reared children with special needs for 15 years had shortening of their telomeres due to stress, which affects cellular replication and keeping a person young.
– A 2009 study found that chronically stressed mothers have a shortening of their life expectancy by 9 to 12 years.
Some of the disabilities that have been shown to impact parental stress and health are autism, ADHD, bipolar, Down Syndrome, sensory processing issues, disruptive behavior, anxiety, learning disabilities and serious medical conditions. Special needs children who exhibit behavioral issues typically cause the greatest levels of chronic stress.
The stress of raising children with special needs generally comes from the following areas:
– Financial Stress: The cost of raising special needs children varies greatly depending upon the need, but there are almost always additional costs. These expenses come from medical visits, prescriptions, specialized caregivers, therapies, equipment, special education and more. One of the greatest financial impacts comes from parents having to miss or quit their jobs to care for their children. Some parents will have to shoulder this financial responsibility for the child’s entire life, which includes having to prepare for the financial demands after they are deceased, but their child is still alive. (According to the journal JAMA Pediatric, it costs $2.5 million to have a child with autism and intellectual disabilities over the child’s lifetime.)
– Medical Stress: Not only are medical visits and prescriptions costly, but parents often have to become their child’s medical caregivers, case managers, and advocates in fields that are usually complex, not well understood and provide uncertain outcomes. It also takes a lot of time and effort to connect to the right doctors, therapists and other medical professionals, and attend appointments and ongoing therapies.
– Daily Stress: Mothers of special needs children report spending at least two hours more each day caregiving than parents of developmentally typical children. This is because their children’s needs demand more attention. Special needs children also tend to have disturbed sleep so parents of special needs children often have less sleep than parents of developmentally typical children. This explains why mothers of special needs children report being twice as tired as mothers of developmentally typical children. Parents must also consider and manage the impact of their child’s condition on siblings and their relationship with their partner. These stressors can be fore life if their special needs child cannot learn to function independently.
The realities of raising a special needs child can be intense and finding ways to manage the stress associated with it is challenging. Much of the advice for helping typical parents manage stress is not applicable for parents of special needs children. For example, one strategy for developmentally typical parents is to take a break and find time for themselves. Parents of special needs children often can’t enlist the help of a typical babysitter or family and friends because their child’s needs are too demanding and hiring special caregivers can be cost prohibitive, if they can even locate them. So what is a parent of a special needs child to do? They have to be more creative and diligent in finding ways to help themselves. They must prioritize themselves when they can and it is safe, despite their child’s needs. This is known as the ‘oxygen mask’ theory, that to help others you must help yourself first.
Some strategies to get started are:
– Take practical steps if you can, like hiring a babysitter or specialized caregiver.
– Be creative in getting help. For example, if you can’t lean on family to watch your child, ask them instead for a cooked meal or find other parents of special needs children and swap time with them if possible.
– Locate other special needs parents for support, information and helpful strategies and life tips.
– Reframe your stress. Studies have shown that thinking about stress in positive ways can impact how stress affects our bodies. For example, when hotel housekeepers were told their jobs actually made them physically more fit instead of taking a toll on their bodies, they actually lost weight and body fat, experienced lower blood pressure and liked their jobs more as opposed to housekeepers in the control group who experienced none of these benefits.
– Be realistic. Raising special needs children is different from raising developmentally typical children so you can’t compare your situation or child to it.
– Try to focus on the good. Research shows that mothers of special needs children are just as likely to have positive experiences each day and are just as likely to volunteer or support their peers.
– Find compassion for yourself, your situation and your child.
With nearly a quarter of US households having a family member with special needs, the stress of parenting special needs children affects many. It is important for these parents to be proactive in reducing, managing and reframing (when they can) their stress.