Being a parent to a child with disabilities is extremely difficult. It is a constant battle of trying not to let the fear and the anxiety get the best of them because their child needs them.
I have a friend who has a child with autism, and she says to me in tears that sometimes she is finding herself on edge with her nerves. Sometimes she can’t even remember what’s troubling her. She is constantly overwhelmed and anxious. She overthinks everything and she worries about everything.
For an outsider, it is hard to understand. And for the insider, it is hard to explain. Here are the things that invade the brain of every parent of a child with a disability.
1. They worry about their child’s continued happiness.
They constantly overthink their child’s future. They want to see their child happy, so whenever their child cannot do something that other children can, it breaks their hearts.
Every time they see happy children carelessly playing on the ground, they can only think about their child at home that can’t play with them. They worry about not being able to comfort their child and make them happy.
2. They worry about what their child can’t tell them and what they may miss.
They are constantly guessing what their child wants or how they feel because their child cannot tell them. So, they have to rely on their instincts and trust their gut or rely on other people’s help to tell them what their child wants and needs when they are not around.
They hate that they couldn’t know how their day went at school. They worry about how frustrating it might be for their child not being understood. But mostly, they worry when their child is not feeling well, and they don’t know whether it is something serious or is just a sore throat or stomach ache.
3. They worry about an unexpected loss of ability.
They never take anything for granted because they are constantly reminded how precious life is and how important health is while watching their child’s struggles every day.
Parents who have an epileptic child worry constantly that the regression in its abilities could surprise them in the ugliest way. The wait for the hospital results and not knowing whether their child’s situation would worsen makes them uneasy and devastated.
4. They worry about inclusion and access.
Parents with disabled children worry constantly about the lack of changing places in public restrooms, lifts, gravel paths, or ramps. As soon as they leave the house they worry about how they will face all these things. And as their children are growing up and are getting heavier, these things affect them even more.
5. They worry about their child hurting itself.
They constantly worry about this. They are scared that their child who has poor balance, wobbly legs and absolutely no awareness of danger will hurt themselves whenever they turn their backs or are unable to react quickly enough. Even a visit to the park terrifies them and puts them on the edge.
6. They worry that everything is their fault.
Did she eat something wrong when she was pregnant? Did they miss seizures? Did they do everything to help them? Should they have knocked on more doors? They are endlessly battling with the what ifs and their guilt.
7. They worry about strangers.
They worry about their reaction when someone is being mean or ignorant towards their child. Because there is a thin line between sadness and anger and when it comes to their child they could do anything to protect them. They also worry that their child might make some noise or touch some stranger’s leg as they pass by, and how strangers will treat them.
8. They worry about outliving their child and their child outliving them.
This is a really sad one. They try not to think about it, but this thought is always there on the back of their mind. They worry about the pain they will experience if they outlive their beautiful child. They worry about losing their child because they love them so much.
Also, they worry about their child outliving them and leaving them on their own. Because who would love and care for their child if they are not there? Who would protect them from the dangers of the world?
Finally, “the prayer of a parent to a child with special needs is that we see our child live a long, happy life. And that we live just one more day.”
Image: J Newland
