I’m tired. Mentally, physically, emotionally and every other “-ally.” I am exhausted. My body feels it, my mind feels it and my spirit is feeling it, too. I’m pretty sure when I look around at other moms—my Mom Sisters)—I’m not the only one in this boat.
Taking care of a child with multiple disabilities zaps you like nothing else. Would we change our child or would we trade this child for any other? Oh, no! But what it takes to keep them, and the rest of our world, going is a huge energy drain. Every resource we have: our finances, our relationships, our time, our strength, even our health is affected.
How do we know when to send up the flag and ask for help?
Well, that’s a personal choice. It depends on if anyone is going to see the flag when it goes up and respond with real support. Sometimes, just saying, “I need a moment” is enough to at least feel seen and heard.
Writing down the hardest parts of the day can also help organize your thoughts. It can help you see where something might work better, or be done a different way.
For me, it was changing my son’s school from a charter school 20 miles away, to our neighborhood public school across the street. Ironically, he loves it. He is doing so much better, and getting more support for his disability!
Figuring out what can give, helps - such as using paper plates and paper towels. Do not berate me for using disposables and cutting down a bit on dishes and laundry! The energy I save might be just enough to get me through one more day!
We also live in an apartment to save on time doing outside chores. It also provides a much-needed pool for our son to use. We have a staff who can do the repairs and maintenance. Every time we think about getting another house, we weigh it against where we are on the stress levels. Thus far, the stress of buying or renting, moving and maintaining a house hasn’t been worth what we‘d give up.
It’s time for me to look at other ways to get some sanity back in my life. I’m calling my TxP2P mentor right now!
What’s your secret weapon?
Connecting with other parents to share and learn can make a huge difference.
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.
To be there for our children during a public crisis, disaster or another emergency, we must first take care of our mental health. As parents of children with disabilities and special health care needs, we are used to finding creative, everyday solutions to our children’s challenges. But what about our own?
Categories: Family Support