Sometimes, I just don’t think I can take one more day of being called foul names, having pencils thrown at me, or being slapped again. I can’t hear “You are not my mom anymore!" I don’t want to negotiate PBS Kids TV time. I don’t want to go to another appointment. I don’t want to sit through another therapy session where a well-intentioned, well-dressed woman tells me “Hang in there, mom!” Does she have a clue what it’s like to live with ODD, ADHD, ASD, and SPD every single day? Does anyone?
Often, I am left with the feeling of being emotionally rubbed raw before 8:00 in the morning, with a whole day stretched out before me to fill creatively and educationally. I feel like if I hear one more insurance denial for services or much-needed medication, I will lose it. If I have to track down yet another form that wasn’t filled out properly by someone else, or tell the same information to the tenth person in an hour, I will crawl away into my hole.
Then I look at him.
I ask myself, If I don’t keep going, then what?
If I don’t make the calls, keep the appointments, listen to the professionals, battle the insurance for the services and medications, then what? What happens to him if I don’t do what’s necessary? He’s worth every ounce of effort I make on his behalf. That smile when he accomplishes something, that hug and “I love you, mommy” makes it worth the maze of bureaucracy I must navigate on his behalf.
Now, where’d I leave that coffee cup?
It helps sometimes just to be able to say it all out loud, to a friend who understands or to the walls. Just the act of acknowledging the stress and frustration can help alleviate it. Connecting with other families who understand where you are coming from, and perhaps laughing over the craziness of our lives, can also help.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.