Navigate Life Texas: Resources for kids with disabilities and special needs

Navigate Life Texas: Resources for kids with disabilities and special needs

Self-Determination: My Child’s Road to Independence

08/11/2016 | Published by: Sarah Barnes

I will never forget when my daughter picked up a cardboard piece and failed to fit it into the puzzle 5 times. I had never seen her work that hard. Every time I tried to help, she waved my hand away. I thought maybe her new bossy side was coming out. Finally she shouted, “I want to do this!” From there on out I sat on my hands and closed my mouth so she could do the puzzle on her own. 

My daughter, Meredith, then age 12, was showing a self-determination (a drive to do things herself and make her own choices) I had never seen before. The key to helping her discover her independence throughout her life was finding something she really liked and then just sitting back and watching her try piece after piece.

But it was not always this easy.

When Meredith was a toddler, I couldn’t figure out any other way to raise her but to do it myself. I wanted my daughter to have as full as life as possible––and that meant rushing in to help her, right?

As it turned out, by removing all her obstacles, I was actually creating more. Meredith figured out on her own that she might find a match by looking at colors of the puzzle pieces. She never could have done that if I was matching pieces for her.

She also found independence in using her walker. She was so motivated, even when she got stuck facing the wall. Through trial and error (and no prompting from me) she figured out how to pick up the walker, pivot, and then put the wheels back on the floor. Not long after, she started walking without the walker.

Self-determination is very much about how Meredith and her peers who have disabilities or special health-care needs find ways to overcome the barriers they encounter. Here are some models that have worked for me and Meredith:

  • Break everything down into steps. This way, you can praise your child’s efforts at every point along the way and they get the praise exactly when they need it (not 5 minutes later). For example, getting to car, getting in car, pulling seatbelt strap over shoulder, listening for click.
  • No activity is too small to build self-determination. I started by having Meredith move a pillow from one end of the couch to the other. For her, this was a complex intellectual activity and she was so very proud of her achievement.
  • Write in a book or on the computer where you are seeing self-determination. For example, did your child pick up her own spoon without prompting? Or did she use the soap dispenser? You will be surprised at how many different ways this happens during a week and how motivating it can be for your child. An older child might like a book with visuals or a computer with your voice to see their progress. Your child can even help you track progress.

Every child paves their own road to self-determination. What a child with deaf-blindness might do is very different from what a child with autism might do. My daughter became more and more independent by navigating her environment and making little victories on her daily schedule.

But there are plenty of bumps and potholes on the path. The barriers can be many. What if my child does not show any interest in doing things on their own at all? What if my child cannot walk or talk?

I encountered this all the time with Meredith. When she was smaller, she often commanded, “carry me!” She would literally stop walking and dig her feet in. 

So isn’t this, in a way, self-determination? Well, yes, but it’s also negative behavior, a tantrum. I actually would explain to Meredith that I appreciated her expressing herself with words, but these words just wouldn’t work. There is a big difference between self-determination that promotes self-esteem and the kind that just gets you unwanted attention.

There were days when I thought I’d never leave the house. It seemed like too much work or it was simply too painful to see other children doing simple things without a thought. The reality was that Meredith knew no life before her disabilities, and I knew every dream I had before the diagnosis. We were coming at this from completely different places.

Was it wrong to have her around groups of typical children where she might have to work harder to keep up? Or should I take her to places where she would be welcomed and helped as a child with neurological differences? Where was she going to learn more?

As it turned out, both places.

When she was 3 years old, I would take her to a public park and sit her down in a sand box. She would learn to press plastic molds into the sand without help and learn to shield her eyes when other children threw sand. But we also went to playtime where all the children had visual impairments. This was led by a teacher who knew specific techniques for self-determination. She could teach them to me – like helping Meredith learn to request “more” and “please” in sign language. See how both worlds can work?

Here are some tips for helping your child learn self-determination from other kids:

  • Find a sports team for children with intellectual disabilities. These teams usually pair a typical peer with a child with a disability. The children can be terrific role models for each other.
  • There are many affordable summer camps that are dedicated to working on independence. You can also use our site to find groups, services, and events near you.
  • Go back and look at your child’s Individualized Education Program (IEP) and make sure you see things that will encourage self-determination. Have a face-to-face meeting with the teacher about it.
  • Talk to all the family members and caregivers who see your child. If they know you want your child to be more independent, they can work to change the way they talk to your child or the games they play.
  • Don’t leave out your child’s therapists! They play a huge role in muscle involvement, speech development, and all the things that support self-determination.
  • Parents in support groups can be wildly helpful in getting resources for you and telling you stories about their own children. 

My daughter will be looking for a job in 3 years. Her continued independence is crucial because I am not going to go to work with her. She will have a whole new set of people to impress. Her day won’t include the school cafeteria or field trips anymore. Just like I have done all her life, I will help her tackle this in steps – like riding the bus, understanding her workplace, and learning appropriate social behavior. When Meredith found her self-determination, I found unexpected freedom. And she found the desire within herself to complete a task without help.

Like so many parents, I have been Meredith’s cheerleader and heavy lifter. But there is beauty in being just a mom and watching that puzzle piece find its place.

Sarah Barnes has been writing about her daughter for 18 years. Her book is called Meredith & Me: A Memoir.

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