My Barriers to Ella’s Independence

One of the first concerns I had when given Ella’s diagnosis of Down syndrome was Ella’s independence growing up and ultimately as an adult. While taking independence for granted with my other children, I wondered about Ella’s ability to complete common, daily tasks.  Would she dress herself? Do laundry? Prepare meals? Count money?

As soon as Ella could crawl, I began preparing her to become self-sufficient by creating opportunities for her to help around the house. In a lower kitchen drawer, I placed her healthy snacks and bowls.  She learned to pull the drawer open, select the snack she wanted, and pick the bowl I asked her to find (Ella; get the big yellow bowl.  Ella; find the small green bowl). As her age and fine-motor skills advanced, she would also open the snack container that I selected specifically for building small hand muscles. She helped me sort the  laundry and recycling, clean the house, and accompanied me to the grocery store where I explained each item purchased. No daily task was too small (replacing the toilet paper roll) or too big (vacuuming out the car); I considered every task required to be a self-sufficient adult and broke those items down into steps that I taught Ella. My mom thought I was crazy.  “Just let Ella be a kid”‘ she said often. But I felt that independence was one of the greatest gifts I could give my daughter.

As such a strong advocate of independence, I was shocked this week – on two occasions – to realize that I, of all people, have placed some barriers to Ella’s independence.  It’s funny, really, that my tendency towards perfectionism ( I can’t help it that I’m happier when my towels are folded a certain way.) or phobia of germs (I blame it on the years of biology classes) would interfere with Ella becoming more grown-up.  And blame my Dad for my insistence that one not waste water.

At the mall this week, Ella insisted on using the restroom alone. I was mortified. She has perfect potty etiquette, of course, instilled in her by my years of training on how we contract germs. But what if the back of her legs touched the toilet while sitting on the paper she surely placed on the seat? What if she didn’t wipe properly? What if she flushed not with her foot but with her hand? It creeped me out.  But as she stood there with hands on hips, glaring at me, I realized she was perfectly capable of going into the restroom alone.  I gave in, though I stood outside the door listening in case she needed help.  She had a lovely time on her own, saying hello to the other ladies, asking their names, and basking in the warmth of the hand-dryer.

Tonight, Ella asked to shower on her own.  She has been practicing this skill for over a year, but I still hesitated. What if she used too much shampoo? What if she didn’t completely rinse the conditioner, leaving her hair dull and heavy? My dad’s voice echoed in my head “what if she wastes water?”  Realizing I was limiting Ella, I forced myself to the other side of the house to avoid the temptation to peek in upon her.

I have to laugh at myself.  I recognize and accept my idiosyncrasies and habits and obsessions (you really shouldn’t place plastic dishes in the dishwasher). I never thought, however, that I might be the one to place limits on my child.

I believe that no limits should be placed on our children with Down syndrome.  Often, the only limits they have are the ones placed upon them by others. Consider that when it seems a limit is reached, perhaps your child can go beyond that barrier if you are creative in finding a new teaching method or solution to the problem.

Ella is very independent. She pushes me every day to let her do more. Sometimes I hesitate, thinking “she isn’t old enough” to do something. But as long as she is safe, I remind myself to let her keep growing and learning and experiencing. Even if she does get a germ or waste a bit of water.  Sorry Dad.


One Response to “My Barriers to Ella’s Independence”

  1. Jennifer says:

    Thank you for sharing your life with your daughter. I live in a world where I also have to remember to raise the limitation ceiling on my son (different diagnosis than Ella).
    Now 26 years old, my son works in the retail field, as the best employee he can be. He enjoys his job, and coworkers and paycheck. Although he has areas where he needs help, overall he manages himself.

    I am proud of him every day.

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