I’ve joined a Facebook page called PROWD (Parents Raising Offspring with Disabilities), that defines itself as being “birthed out of the needs of those involved in caring for children with special needs and disabilities. It is intended to be a “family” who support, network, and assist one another on their journey.”
It gives parents of children with disabilities a place to receive support and encouragement from each other, a place to share victories big and small, to unload and get real about the challenges caring for a disabled child brings without fear of judgment or criticism, a place to not be alone in our struggles, to swap treatments, coping skills, helpful ideas and to find other parents locally for forming personal relationships if desired.
Parents from all over, dealing with all types of disabilities and kids of all ages frequent this page. It is an online support group for people who expend so much time, energy and emotion on never-ending care, attending a literal support group would be impossible.
Recently someone on the page posed this question to parents: What is the primary emotion that outweighs all others in your household?
The following are the top ten out of one hundred and twenty eight responses:
The majority of fear responses were related to the child’s future and what will happen when the parent is no longer able to care for him/her.
Some of the lesser rated responses were inadequacy, guilt, sadness, uncertainty, restricted and even depression. There were some positives as well: laughter, hopeful, thankful, proud, happy, peaceful and it was good to see love at the top of the list.
We love our kids no matter what other emotions raising them may evoke, but no one denies parenting is some of the hardest work we do in life. All parents feel all these emotions at various stages of the child rearing years. The commitment and dedication required is both relentless and rewarding.
For the parent of a disabled child, these emotions can be constant and life long. Some research studies have shown parents of kids with special needs are under the same stress as a combat soldier, especially in cases of severe autism or multiple diagnoses both medical and cognitive. These parents are often in a state of high alert, short on sleep and unable to take time off to relax and unwind.
The stress load is a recipe for disaster for caregivers who worry about everything except themselves.
If you’re out somewhere and see a child exhibiting poor behavior, don’t assume the child is just a “brat” and the parent isn’t doing their job. Give the benefit of a doubt and remember there may be more to the story than what you’re observing.
If you are blessed to know someone who parents a child with disabilities take a minute to encourage them. You needn’t tell them they’re special (usually not feeling that) or angels (usually not being that) or any of the other “cliche” statements often made, just give them a hug and tell them what a great job they’re doing.
And don’t forget to pray. Ask God to fill them with strength and endurance far beyond their own.
Your acknowledgement, encouragement and prayer could be the reinforcement that carries a struggling parent through another day.