August 25, 2011

Fragile X Syndrome and Eating

We have been working with Grant for several months (probably close to 18 months) to learn how to eat with a fork and spoon. It has been no small task. He tries very hard but because of his fine motor and oral motor planning issues he struggles to firmly grasp the utensil, rotate his wrist to scoop or stab the food, and then put the proper amount of food into his mouth.

Pictured above are all the forks and spoons we have tested. The last set (red) has thick, weighted handles. They make it easier for Grant to grasp and control his movements.

Unfortunately, even with special utensils, it is not uncommon for Grant to overfill his mouth, causing him to gag and choke at times. I have fine-tuned my Heimlich maneuver skills. Grant does not feel the food in his mouth the same way we do (hypotonia and Sensory Processing Disorder). Because of this, he often stuffs his mouth too full of food to get the sensation that his mouth is full enough.

We use mirrors to show him how full his mouth is and to encourage him to eat properly. Sometimes the mirror helps, but it can be a distraction too. We also use a z-vibe and pop rocks to wake up his mouth muscles/nerves before eating (a habit I need to get back into consistently).

After several months of coaching him to eat without using his fingers, Grant still looks like this when he is eating. :) It is a work in progress.

We were having lunch with friends when this picture was taken. While we were eating, Grant's friend kept saying "orange, orange". We didn't know what he was talking until we looked at Grant. Yes, Grant's face was definitely orange.


  1. Sam is the messiest eater ever! Thanks for your blog post. It makes we realize we aren't alone.

  2. Yep, can totally relate. Our youngest FX'r (4) overstuffs, but is neat about it. Sounds strange, I know. Our oldest (7), well, not so neat. Forks are the hardest for him. Our middle is a girl(6), and tries to teach them how to eat properly...really cute! Wow! I didn't even know there were that many choices for utensils! I'm gonna try the pop rocks on the boys! I've heard of doing that, but never did.

  3. Cole just learned how to feed himself with a spoon. Of course he is still only tolerating pureed foods but he is trying hard to navigate eating with the spoon. The ones with the thick wide handles are the best......the ones on the end that are red and weighted......where did you buy them from......and what is the name of them so I can find them? Thanks!
    (Cole's Mom)

  4. @Anonymous Hi Melissa and way to go Cole! I searched high and low for the weighted utensils. Unfortunately, they are not cheap – but they are worth it. Grant started out with the weighted spoon from Therapro ( – he used the teaspoon size spoon. It was perfect. Because he still isn’t great about opening his mouth up very wide, he continues to use the teaspoon from time-to-time. Then he graduated to the red-handled fork and spoon you mentioned (last in the row of utensils pictured above). They weren’t easy to find but I finally stumbled across them on this website: (you’ll need to scroll down the web page a bit to see the selection). To conduct your own search, use the phrase “pediatric weighted utensils”. I hope this information is helpful!


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