|Above is the progression of her sewing work in school over the past 3 months.|
Tuesday, October 6, 2015
Those who are familiar with Apert Syndrome know that the fingers are the single most defining characteristic of the syndrome. During normal development, the fingers start out as fused together although eventually, a signal is sent to the hands and feet so that the fingers and toes separate. Unfortunately, this process does occur for a person with the syndrome and hence the fusion.
Surgery is most often recommended as early as possible so that as the child grows, his or her ability to hit the developmental milestones are not hindered. Unfortunately, even with the syndactyly release, their fingers remain stiff because of a missing middle joint (called the PIP or proximal interphalengeal joint). In the case of Nina, while she now has 5 fingers on one hand (the other hand surgery will be scheduled soon so on the left hand she only has 3 digits), she is still unable to make a fist or bend her fingers like other children.
The lack of hand dexterity makes it difficult for her to perform simple tasks. Holding a pen, writing, cutting with scissors, buttoning a shirt and even picking up small objects from the floor are always a challenge. This is one of the things that Nina's teachers in school take into consideration whenever they present materials to her. But sometimes, our little girl seems to have more faith in her abilities than the people around her.
One example in particular is the sewing activity. Although sewing is a standard material for her age group, Nina's teacher opted not to present it to her because of her condition. Her teachers were worried that the might end up frustrated with the activity, but she kept bugging them about it. Eventually, the teacher relented. To her surprise, not only did Nina complete the activity at the first try, she did it excellently! And because she wanted to bring it home to show to us, she did it twice so that she could leave one for her portfolio.
Not only was it a big achievement for Nina, it was also an eye-opener for her teacher not to undermine the capabilities of her students and for me not to limit the capabilities of my daughter. I read this quote from Facebook page for mom's with special kids needs, it said: "Let us not let textbooks limit what our child can or cannot do." And in the same way, we should not let one person's disabilities define what he or she can or cannot do.
Strength does not come from what you can do.
It comes from overcoming the things you (or other people)
once thought you could not.