A few months back in one of the support groups I am in a Mum was trying to figure out how to help her child's pencil hold and many were telling her to just go buy any old pencil grip from the stationary store. Her child had the exact same hold as Mr E so I shared these photos with her and our journey with trying to assist Mr E's and Mr C's hand issues that they have due to their EDS.
I thought I would share some of this with you in case a child or person in your life is having issues with their pen/pencil hold and may or may not have hand pain.
Disclaimer: I am just a Mum of kids with EDS, I also have EDS and Dyspraxia and my 17yr tests positive to Dyspraxia, I and my 19yr have Fibromyalgia and Orthostatic Intolerance. Posts about our experiences, I am not a medical professional, I can only speak of our experiences and what has/has not worked for us.
This is Mr E's pencil hold without any assistance, those bendy EDS make pencil control difficult but it also means he and his brother have a lot of hand and wrist pain from writing and drawing, their writing speed is not where it should be for their age and they are not able to write at the neatness level expected at their age.
We do lots of Occupational Therapy focusing on Fine Motor Skills at home.
Both boys have had many different pencil grips over the years and none fully corrected the issues they had.
This is Mr E's current pencil grip, it is hard to see due to the umbrella part of the grip but his finger tips are still bent backwards.
The need for a custom hand splint for each boy was apparent from early on but finding a Hand Specialist was a challenge. The first one we saw misdiagnosed a issue with my daughter's hand and said some things that showed me he had limited EDS knowledge. Then I found the wonderful Olga (she is a Upper Limb Specialist) and she made a custom splint for each boy and had Coralee bring her cello in and play for her so she could make a splint that would correct the issues she was having without impeding her playing.
Here is Mr E just using his splint without his grip. As you can see he still bends his index finger in a funny way but the thumb is improved, this is important as both boys have had their thumbs get looser in the 12 months before getting their splints so they need the thumb support.
Here is Mr E wearing his splint and using his grip.
It is hard to see but no joints are bending in the wrong direction. YAY.
It
can take lots of trials to find the right grip, but even the best grip
for the person may not be enough if they need a splint.
Here is Mr E and Mr C's splints.
Thought they both have issues with their hands, most especially the thumb joints the issues are different and require a different splint.
The plastic that Mr C's is made of is heat sensitive so it can't be left in the sun or the car, the same applies the the hard part of Mr E's.
They have held up really well to the battering they get from a 8 and 10yr boy at school.
So my advice is if a child or person has issues with their pen/pencil hold seek advice from Hand Specialist/Upper Limb Specialist.
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