We have four children. Our youngest son was born with Weaver Syndrome, which is a rare multisymptom disorder. He is wheelchair bound, has chronic lung issues, two feeding tubes, and requires 24/7 care. He is very aware of his surroundings, understands what is going on around him and has an unbelievably sweet disposition. We can’t imagine our family without him, but it does take a lot of work and care to provide for his needs. We have spent the last thirteen years tweaking schedules, routines and care plans in order to provide for his needs. Sometimes it seems like as soon as we get a new system perfected, we have to change it because a new issue arises that requires different care. In the ever changing landscape of care giving, we refer to these as “new normals.” (What is “normal” anyway!)
These systems, however, have helped us keep our sanity (for the most part), and allowed us to provide a high level of care for our son. We have five basic systems that have been our mainstay.
- Start the night before. Our son attends public school and rides the morning bus. There is no way we could put him on the bus at 7:20 a.m., if we didn’t start the night before. Before I allow myself to fall into bed (or even sit down to watch TV), I prepare all of his nighttime and morning medicines, make his formula, load his feeding pump, lay his clothes out and make sure his backpack has all the supplies he will need for the day.
- Divide and conquer. I’ve often thought our morning routine is much like a well rehearsed dance. My husband and I know our parts as we move in and out of our son’s room getting him ready for the day. My husband does the heavy lifting and I handle grooming and medical treatments. Our nighttime routine is much the same. I make meds and milk, while my husband administers breathing treatments.
- Keep your bag packed. If your loved one has medical needs, always keep a list of their medicines and at least one dose of each medicine in a bag. If they are frequently hospitalized, keep a bag packed with essentials for you as well. You never know when an emergency will arise. For instance, in the South, we occasionally have white stuff fall from the sky that sends the entire city into a panic. You don’t want to be stranded and find yourself unequipped to take care of your loved one’s medical needs.
- Post your schedule. Imagine that you wake up one morning with the dreaded stomach bug and someone else has to implement your system. Keeping a specific schedule posted will insure that someone else will know how to care for your family member. Write down all medicines with dosages and times to be given, and give specific details about how to administer medicines and any medical treatments that your loved one requires.
- Be flexible. Even with the most efficient systems, there will be times when life throws you a curveball and you just have to roll with it. I have a friend who says, “Blessed are the flexible, for they will not break.” If you lived in this caregiver life for long enough, you’ve probably learned this lesson. Sometimes, you just have to give yourself (or your spouse) a little break. A little spontaneity here and there is good for us all!
Taking care of a child with special needs or an aging parent is not easy. Sometimes, we all wonder how we do it all! It takes time, effort and brain space to create schedules and routines. If you take the time to plan and prepare, your brain and tired body will thank you. The systems you create will not only help keep your household running efficiently but will also help you take better care of your family. And, when it comes down to it, that is all we really want.
– Debi Blaising, Springible Contributor
Debi is a contributing writer from Hoover, Alabama. After marrying her high school sweetheart, she and her husband lived the adventure of homeschooling their three oldest children. Life got even more adventurous with the birth of their fourth child, who was born with a rare genetic syndrome.
She considers her three oldest children her son’s best therapists. While life can be challenging with managing the daily care of a complex child, Debi has kept a sense of humor in the midst of her chaotic life and enjoys sharing practical advice to other families who are blessed to have a child with special needs. An avid gardener, she is happiest with dirt under her fingernails and fresh cut flowers on her kitchen table.