As a parent of a child with physical or cognitive disabilities, this can feel like a slap in the face. We don’t necessarily have a choice about how we are going to use our hours. We accommodate our children’s needs for physical care. We give our children the time they need to process and carry out instructions. These things cannot be hurried.
Last week a friend and I were commiserating about how time-consuming physical disabilities are. Sure, there are the big time-gobblers that come with the territory, like IEP meetings and endless doctor appointments.
But even more than that, there are day-to-day time thieves related to disabilities that steal away tremendous minutes. Every day. Day after day. Month after month. Year after year.
Moms of able-bodied children can direct their kids to complete their own care. Kids
may not be definitely are not quick when they are toddlers but there is the hope that things will speed up as the kids mature.
This isn't necessarily true for kids with disabilities who will grow to become adults with disabilities.
Let’s look at just one example. When the mom down the street needs to run errands, she can instruct her kids to grab their shoes and coats and meet her at the car.
Moms of kids with severely physically challenged children go through an entirely different process:
· Check and replenish bag of travel supplies (5 minutes)
· Put on AFO’s and shoes (5 – 10 minutes depending on the style)
· Put on child’s coat (2 minutes)
· Load child into wheelchair and walk outside (2-3 minutes)
· Unload ramp or lift-up seat, secure child or wheelchair, reload ramp or lift-up seat (5 – 7 minutes)
· Load wheelchair, if using lift-up seat (1-2 minutes depending on how many parts you have to remove)
· Stop to recover breath if said wheelchair is over 30 pounds. Most standard wheelchairs are. Dust road grime from the wheelchair tires off your clothing (1 minute)
· Go back to the house for your own coat and purse, DOUBLE-CHECK THAT YOU HAVE YOUR KEYS (2 minutes...infinitely longer if you have forgotten your keys)
Hmmm. It takes 20 – 30 minutes just to load up the car. This assumes the child doesn’t need to return inside to use the toilet. This happens.
And that’s just loading the car. What about dressing? Bathing? Toileting? Eating? Homework? The list goes on, and those extra 10-, 20-, 30-minutes add up fast.
How do we respond to this?
1. We commiserate with one another. It feels so validating to talk with other parents facing the same challenge of how to fit everything into the day. Our 24-hours are not our own. You and I are not the only people who truly don’t have discretion over how we will spend all our hours. Sometimes it’s nice to know you aren’t paddling the boat alone, isn’t it?
2. We streamline whenever possible. It’s helpful to keep a well-stocked backpack in the car with all the items you might need away from home. Our family keeps a change of clothes, an extra jacket, extra toileting supplies, spare g-tube extensions and an extra bolus syringe in the car for emergencies. To remind myself that something needs to be restocked, I toss it up on the passenger floor so I’ll see it when we’re unloading.
How else can you streamline your day? Can you organize your feeding or toileting supplies in the room to reduce backtracking and unnecessary steps? Can you purchase frequently needed supplies in bulk? Can you set out clothes and school items the night before?
3. We give ourselves extra leeway. Our families don’t operate on the usual timetable, so it does no good to try to squeeze into typical standards. While our destination may only be 10 minutes away, accept the need to start loading the car 30 minutes before we need to be there. Don’t fight it; go with the flow.
4. We are gentle on ourselves. We can’t get everything done in a day that needs to be done. But if, at the end of the day, our families tuck into bed safe, fed, clean and happy, we have accomplished something amazing. Be proud of your accomplishment. Do not allow the things left undone to steal your joy.
5. We MAKE time to do things that renew us. This does not happen automatically. No one is going to carve 15 minutes out of your day for you to do the things that refresh you. YOU must do this for yourself. You need this. Force yourself to find a way to grab a few minutes with something you love, whether it is time with a good book, time in your sewing room, time to relax with your spouse or in a bubble bath, time to train your goats...
There’s a corollary here that might help you locate a few minutes. It’s good to know everything you can about your child’s disability. Just be aware that you can lose yourself in researching the condition and its treatments (just ask how I know this to be true), especially online. It can be very helpful and quite fascinating, but hours can fly by without you realizing. Set a timer.
And when that timer goes off, take those 15 minutes of personal renewal. Please. You will feel so much better for it!
6. We learn to prioritize our commitments. We have to make what little discretionary time we have in our days count. Count Big. Count Big for the things we are personally vested in. Save the precious moments you do have left for the things that matter terribly to you.
I’ve heard moaning from several places about the noticeable lack of participation by special needs parents on school PTSA boards. Um, excuse me. Not only does our child with disabilities – and the rest of our family – require our time, but according to our life goals, the PTSA book sale may just not come up on top. Great if it does! PTSA is an excellent organization with good goals. But if it’s not a personal priority, we don’t need to feel obliged to make excuses.
We do not need to feel guilty saying “no.”
7. We learn to embrace our slow pace. I’ve told you earlier about my wise mentor, Vicki. Once when I complained to Vicki about how long it took to get through the basic routines of our day as I struggled with all my daughter’s “baggage,” she gave me a lovely piece of advice.
“Rose-Marie,” she said, “being forced to slow down is a gift. When you have to move through life slowly you will learn to see things you would have raced past before. Having to slow down allows you to savor life.”
Don’t you love her?
Several years later, Vicki’s daughter died unexpectedly. In one of our conversations when I asked how she was coping, Vicki said, “Something awful is happening. I am starting to hurry again like the rest of the world. I am forgetting how to live slowly...and it is terrible.”
There are days I struggle to remember that my slow pace of life is a gift. And Vicki is right. We may not accomplish as much in a day as our neighbors, but we have seen the small miracles.
We have given our children comfort and assurance. We have tangibly demonstrated love by our patience in accommodating their needs. Our actions show our children that they are precious to us. We have time to delight in these remarkable young people.
The hurry in life doesn’t matter; it doesn’t leave anything to show for itself but stress and gray hair and speeding tickets.
While I'm excited for what awaits on the other side, I’m in no race to get to the end of life. I might as well enjoy the scenery along the way. My child is teaching me this gift.
How about you? What advice can you share about living days where not all 24 hours are left up to your plans?