11 Things Parents of Kids with Disabilities Need to Survive and Thrive
written by Lisa Jo Rudy, posted on VeryWell Family
When you’re the guardian or parent of a disabled child, various aspects of parenting are magnified. Playdates can become complex projects requiring diplomacy, support, and vast quantities of time and patience. Trips to the doctor are frequent, expensive, time-consuming, and fraught with worry. Shopping excursions are likely to result in sensory and emotional overloads for both you and your children.
With so much more to think about, worry about, plan for, and manage, it is paramount that you’re taking good care of yourself.
11 Needs of Guardians of Disabled Children
Here’s a partial list that may sound familiar to parents and guardians of disabled children, especially if they have a disability themself. While these are the top 11, they’re in no particular order.
More Time
Between PTO meetings, helping out with homework, and work deadlines, it can be hard for any parent to find “me” time. Magnify that for parents of children with disabilities who might also have IEP meetings, therapy appointments, and many doctor appointments in the mix.
Add challenges such as driving 50 miles to get to the only dentist who will work with your child’s sensory needs, only to learn that you’ll need to come back next week to fill that cavity… and then driving 60 miles in the other direction because your kid wants to take ballet and the only mobility-inclusive ballet class is on the other side of the county.
And let’s not get started on how the rest of your time is spent working or nurturing relationships with your partner(s), your friends, and your extended family.
Energy Reserves
Not only is it time-consuming to be an advocate for your child on top of parenting, it’s also exhausting. It takes a lot of energy to raise a child, and then add hours a day for driving to out of town appointments, filling out paperwork, reading new studies and research articles, caring for your child during meltdowns and flareups, or cooking special foods for your child because of allergies, intolerances, or feeding challenges.
Toss in the energy required to cope with strangers’ stares, teachers’ “concerns,” and grandparents’ worries, and it all adds up to very few hours of rest.
Money for Critical Expenses
Without taking into account the effects of inflation, a low minimum wage, employment discrimination, and other systemic barriers, the typical costs of raising a child increase if the child is disabled. A multi-income household should be able to earn enough money for a family to live comfortably, but that is not always the reality, and many households are led by one parent or guardian.
Mobility aids, communication devices, medicine, specialist co-pays, and the extra gas to drive to all those specialists—it all adds up. Many parents of disabled kids also wind up cutting back their work hours to be available for their child, thus decreasing their income when they need it most.