Practicing fine motor skills in Angelman, a spoonful at a time
A columnist's daughter has been making strides in scooping with eating utensils
As Juliana, my 13-year-old daughter with Angelman syndrome, gets older, improving her skills stays at the forefront of our daily living. We work on toileting, tooth brushing, and stair climbing. Any task that practices her fine motor skills is also on the list. One of those ongoing skills is using a spoon to feed herself.
Juliana has been feeding herself for many years. Bite-sized pieces are manageable for her to eat with her fingers. She uses her fork at school, but we don’t require it at home.
Juliana has come a long way with using the fork. When she was younger, she could get the fork on the food but not much else. Now that she is strong enough to pierce the food with a fork, it is easier for her to use.
However, a spoon is another matter. Getting food on a spoon was a tough task. Because it was so challenging for Juliana, I requested that scooping become a part of her individualized education plan goals.
Practice makes almost perfect
Each week, I would send a spoonable food item in her lunch for practice. She also practiced at home with a 90-degree curved spoon designed for those with motor skills challenges. To make scooping easier, she used a special bowl with an extended lip that made it possible to gather and then scoop her food. Starting with the curved spoon was a good introduction to the skill, but after a while, it was more difficult for Juliana to use. So, eventually, we transitioned to toddler-sized utensils and small cups with handles.
I wouldn’t say that Juliana is a pro at using her utensils, but she can navigate them well with minimal support and redirection. Putting our hand on top of hers helps, as does repositioning her spoon, because sometimes she’ll turn it the wrong way.
Last week, when I made oatmeal for breakfast, I decided to let her feed herself for the entire meal. With a meal that requires scooping, either my husband or I usually would sit next to her and offer help. But that morning, I needed to work on another task in the kitchen and wanted to see how well she would do without me. I checked in once and she was doing just fine. When she was done, there were a few missed clumps of oatmeal on her lap, but it wasn’t the disaster I expected.
Juliana Johnson practices her fine motor skills while eating oatmeal. (Photo by Sabrina L. Johnson)
The other morning we had another breakfast with oatmeal, and I gave my husband a heads up as he prepared to sit next to her.
“Juliana can do her oatmeal by herself,” I told him.
“I don’t think so, sweetie. We always help her with oatmeal,” he replied.
“Not anymore,” I told him cheerfully. “She’s graduated.”
Note: Angelman Syndrome News 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 Angelman Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.
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Comments
Cynthia Cappetta
Hello Sabrina,
thanks for posting helpful hints to another angelman Mom. My daughter is deletion positive 21 yrs. old going on 22 next month. We are still working on utensils, where I spear the food with a fork, then Victoria picks it up eats then hands it back. She likes the spoon but needs work with that also. She eats finger foods, but seems to be reluctant to eat out by herself and would rather someone feed her. She also puts up a hissy fight for dinner, which I don't understand since I try very hard to give her nutritious but good tasting food. Any suggestions?
Sabrina L. Johnson
Hello Cynthia,
I've been on a hiatus so I apologize for this delayed reply. When you stated, "She also puts up a hissy fight for dinner..." I know exactly what type of behavior you are referencing. Juliana can be quite stubborn too. I would suggest that you keep at it anyway. It sounds like your daughter is strong-willed and creative at getting what she wants.
Juliana loved being fed and we started out setting up the food the way you are. Then, a random conversation with her teacher revealed that she was completely feeding herself at school. That was the turning point for us. I think that practice has made the difference, but it has come with some growing pains too. Initially, there was resistance and lots of screaming with Juliana not getting her way.
Victoria will probably continue with her tantrums, but if eating is her goal, she will soon realize she needs to put forth more effort. Other parents may have different experiences, but for us, when we required Juliana to do more, she did more. Practice also doesn't need to be the complete meal. Maybe she eats half the meal with help and half without. But, she won't ever be able to do it alone if she's not challenged to. When you practice, make sure you are mentally prepared because it will probably be a battle for a little while.
I hope this helps in some way and please check back to let me know how it goes.