For those of you who are unfamiliar with Rett Syndrome, girls who have Rett typically have compulsive hand movements. My daughter wrings her hands all day, unless she has her hands engaged in a certain activity....playing on her ipad, playing connect four, playing ball, or flipping through photo albums or magazines. Her hands are sweaty non stop and she wrings her hands so hard that her knuckle on her pointer finger on the right hand is much bigger than any other knuckle on her hand and she has rubbed sore spots on them.
Keeping her hands busy has been one of our family's goals with her since her diagnosis. She has such great functional hand use that we do not want her to lose this skill. I truly believe, her love of playing ball (volleyball style) has helped with hand use!
Self feeding has also been a long time goal for us with my daughter. She can self feed with typical finger foods with no problem, but anything that requires a utensil is a challenge. To this day, a spoon still is more difficult for her to manipulate....she can, but it is very messy. However, if we fork her food for her and lay the fork in front of her, she will pick it up, put the food in her mouth and then set it down for us to fork the next mouthful! This skill took years to gain....but we did....and we keep practicing it as we don't want to lose it!
This is today's gift, because today she has had great hand use! She was purposefully pushing buttons on the remote control in her room to turn her tv on...with help she did it! She ate all her dinner with her fork and was so pleased with herself! But my favorite part of today's gift is, she held my hand many times today.....meaning she grabbed my hand and wanted to hold it! I love it when she reaches out to me and wants me to hold her hand. My post today could not be any more perfect....just this second, I looked up at the tv to see if my daughter was asleep yet (we have cameras in the kids rooms so we can see if they get up...mostly for my daughter) and my husband fell asleep in bed next to my daughter with Rett Syndrome. It is not the fact, that he fell asleep next to her that grabbed my attention, but the sight that they are holding hands.
This image (I wish I could share it with you, but I think he would kill me if I posted this picture on my blog....but I took one in case I am wrong!!!) melts my heart and made me realize that today's gift was meant to be! *****UPDATE.....he let me post the picture*****
Here are some quotes for today....
Whenever your lonely, just look at the spaces between your fingers and remember that's where my fingers fit perfectly.- Unknown
A mother holds her children's hands for a while, but their hearts forever- Unknown
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