Independence Report

Independence in life is THE goal. Every parent eventually wants their child to be independent. In America, that usually means that the kids grow up, get a job or attend college, be self-sufficient, and move out of their parent's home.

Parents of children with disabilities are no different. We want our children to do the best that they can whatever that may be. We want them to be as self-sufficient as possible, but it's not always easy to achieve. Outsiders may believe that we, the parents, are partially to blame for a lack of independence. Some feel the parents may do too much for their child, don't push them enough, or are too overbearing. No parent is perfect, but there are true barriers to helping those with disabilities do everyday tasks.

For myself with Jaycee, there are many factors that become obstacles to her independence. Jaycee's minimal verbal skills is probably the biggest hurdle for us. She doesn't have the verbal skills for a 2 way conversation. She can't ask questions when she doesn't understand. That makes it difficult. If she doesn't respond to my directions, I'm not sure if she doesn't understand, if she doesn't want to, or just what the problem is because she can't tell me. Add an intellectual disability to that and you'll find that teaching a simple skill isn't so simple.

Besides that, Jaycee has low muscle tone common with Down syndrome. This makes some basic motor tasks hard for her to do, because her muscles aren't as strong. For instance, carrying objects up steps is hard for her (think about carrying a small grocery bag up a couple of steps). Her muscle tone gets worse after hospital stays for various amounts of time. After two hospital admissions in January, Jaycee couldn't walk up our stairs because she was so weak. She crawled up them using her hands and knees for a few weeks until her strength improved. Her frequent illnesses disrupt many things in her life, but they definitely affect her muscle tone, endurance, and strength. This impacts her ability to make progress in her independence because she's fighting to get back what she had to begin with.

Another barrier has been Jaycee's fine motor skills. Many simple tasks require small muscle movements in the hands and fingers. Fine motor has always been challenging for Jaycee. Opening a water bottle, taking the cap off of toothpaste, opening a shampoo bottle, and tying your shoes are all examples of common daily tasks that require fine motor abilities. Good fine motor skills are vital to being independent.

Even though there's some challenges, Jaycee can do many things. When Jaycee was younger, I wanted to know what to expect in the future. I searched and read to try to find answers that only time could reveal. I'm less concerned about what our future holds now, because it's really not a worry for me anymore. Still, I'd like to offer information for the parent out there searching and wondering what life will be like. 

Every child with Down syndrome is different. Every child has strengths, weaknesses, and are motivated to do different things. No two people with Down syndrome will have the same abilities or challenges. But, here are things my 12 year old can do:

-Write her name. It's not perfect, but she tries.
-Take selfies.
-Call people on FaceTime. (Usually when she's not suppose too. Ha!)
-Brush her own teeth doing every step by herself. I do an extra minute of brushing just to be sure.
-Once I turn the water on, Jaycee can do almost everything in the shower herself. Shampooing her hair is still a bit of a challenge.
-Dish out her own food on her plate. She likes to give herself generous portions.
-Put her plate in the dishwasher after meals.
-Set the table for meals.
-She's just started opening up her own water bottles for drinks.
-Put dirty clothes in the hamper.
-Put her clothes away in the dresser or on hangers in her closet.
-Put her shoes on by herself, but they may be on the wrong feet. She can't yet tie shoes.
-She likes to pick out her own clothes. She doesn't always understand to choose them based on the weather, but she does pretty good for the most part.
-Gather what she needs for school in the morning.
-Feed the fish on her own. Feed the cat with a little help opening the can.
-Swiffer mop the floor.
-She loves to unload groceries from a shopping cart into the van. She helps carry grocery sacks inside the house too. A couple of times, she started bagging groceries at the store and did pretty good. Sometimes, she surprises me.

Is Jaycee behind? Yes, of course. But, she has accomplished many skills considering that she is minimally verbal, has a significant Intellectual Disability, and has major gross and fine motor deficits. Yet, there are many things she can do. Not only that, she keeps learning and doing more. Next year, I'm sure the list will be longer. I'm proud of what she's accomplished. As far as the things that are still a struggle- we'll get there. If not, we'll manage. We always have.

I only share this information for parents who are curious. What she does is important to many teachers, professionals, and the world. Who she is and becomes is by far more important!