Ella is an almost 7-year-old who has been driving a 300+ lb power wheelchair since she was 18 months old. She has had her share of banging into corners, taking chunks out of the drywall, and catching herself in doorways. Occasionally, she will run over a foot or two (we call it being “wheeled”), or even a paw if the dogs aren’t fast enough. But all in all, she has basically mastered the art of driving her chair.
This is one area where Ella has complete independence: mobility. Other areas of her life, however, don’t lend themselves well to her sense of independence. Having SMA Type 2 often leaves her requiring the help of others to get what she wants and needs.
For the first five years of her life, it has been mommy and daddy, grandma and grandpa, aunts and uncles, friends, and teachers working together to help fulfill Ella’s needs. We’re the adults – we know best. Ella’s slightly older siblings, Ava and Henry, were never really called upon to help Ella with her daily wants, until recently that is.
Ava, who is nearly 10, and Henry, 8, increasingly have been given more responsibility for helping around the house. This includes helping with Ella. And while Ava and Henry are usually willing to help, the trick lies in getting Ella to ask them for that help in an appropriate manner – and for them to respond in kind.
“Can someone get my baby doll?”
“Can someone open this marker?”
“Can someone get me my glass?”
“Can someone get me the remote?”
These and a host of other requests fill our days; for Ella is a 6-year-old girl who wants to play, explore, and engage in all those things kids love to do. Her mental capacity is unaffected by SMA and her desires for fun, excitement, and inquisitiveness burn as any other 6-year-old’s would. The problem lies in the fact that she is too weak, too immobile, or too constrained to carry out many of the “tasks” necessary to embark on life’s adventures. She requires help, and she knows it.
It’s asking a lot for 8- and 9-year-olds to do so much for their sister, yet they acquiesce – begrudgingly at first, but they acquiesce nonetheless. Yes, there are some heavy sighs, a few rolling eyes, and some slow “stomp-like” walking that occurs, but in the end, Ella receives what she needs. And yes, Ella can be impatient and even demanding. But we’ve taken some steps to combat all of that.
We recently sat down with Ella and talked with her about ways she could ask people to do things for her – things that she simply cannot do for herself. And while she often uses the word “please” when asking, she oftentimes forgets to say “thank you” when addressing her siblings (although she’s good about thanking the adults who help her). So we gave her two tasks to tackle when dealing with her brother and sister:
1. When you want someone to help you, call them by name rather than just saying, “Can Someone…?”
The reason for this is that if you leave it open-ended as such, then Ava and Henry will consider the other one as that “someone.” Be specific in whom you ask, and change it up to provide equity.
2. After Ava and Henry have done what you’ve asked them to do, you must not only say “thank you,” but also tell them how much you appreciate their help. Use sayings such as, “You’re the best!” or “That really helps me a lot.”
The reason for this is that it helps foster a sense of responsibility and commitment that the sibling can feel good about, and feel proud about. It also lets them know that their efforts are truly appreciated and are necessary.
For Ava and Henry, we told them that one of the things that makes our family so special is that each one of us brings a special something (an ingredient, if you will) to the recipe that makes our family a family that supports one another. They love feeling so included.
Ella received her first Spinraza injection this week, and maybe, over time, the requests for help will decrease and she hopefully will become more able to “fend for herself.” In the meantime, each one of our family members must add our own special ingredient to the smorgasbord we call The Casten Family.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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