Raising a child with a disability is hard. There are so many appointments, therapies, and school meetings. You have to keep track of medical stuff and educational stuff. You must figure out how to balance life with the needs of your child. If you are married or have a partner, the challenges you face daily can put a lot of strain on the relationship.
My oldest son has a lot of physical needs. He needs help with every aspect of self-care and feeding. It is physically and emotionally draining. In the beginning, my husband and I used to argue over whose turn it was to do what. Whose turn is it to feed? Whose turn is it to bathe? Whose turn is it to get up at night? The list goes on and on. Over the years, we figured out a pretty good routine that works for us.
Our biggest challenge was nighttime wake-ups. Our son wakes up at least once per night to be repositioned. When we would hear him cry, we would fight over who was going to get out of bed to help him.
It was awful.
I finally came up with the idea to rotate nights. It has changed our lives! There are no more middle-of-the-night arguments. When it’s my night and I hear the crying, I just get up. Then I’m “off duty” the next night. The person who gets up in the middle of the night is also responsible for getting up with him that next morning.
We’ve also worked out a feeding and bathing routine. My husband feeds the kids every morning while I get clothes, backpacks, and school lunches together. He dresses the oldest while I take care of the youngest. He then takes them to school. Since I work from home, I’m responsible for after-school pick-up and doctor appointments.
Thankfully, we have in-home therapy appointments. Since my husband does the morning routine, I take care of the night routine. I do the bathing and toileting, and then we both do the snuggling and bedtime tuck-ins. For dinner, we take turns feeding. I try to pawn that one off on my husband as much as I can! Bribery works sometimes!
Without this routine, I’m not sure our marriage would survive. We’re both still tired and exhausted a lot of the time, but at least we’re not fighting about everything. I mean, we still have moments—but not about these things!
Make time for yourselves together and as individuals. There is good information in the Self-Care for Parents section of Family Support.
As parents, the work of assuring our child feels safe, secure, and valued at home, school, and in the community is challenging and full of risks. In Sandra Kaufmann’s book, she shares relatable ordeals and hard decisions their family had to make for their daughter with disabilities.
Categories: Family Support
I have learned that not everyone is capable of providing emotional support to parents of children with disabilities. There is limited help available with the day-to-day struggles associated with managing time, appointments, and responsibilities.
Categories: Family Support