Rare Conditions

Family Challenges

I just read a very interesting article in Money Magazine, May 2013 issue.   It is called “Paying for Finn” and is written by Jeff Howe.  The article details the challenges in caring for a special needs child.  A child such as Finn on the autism spectrum brings different challenges than most children with birth anomalies of the upper extremity but the article is interesting nonetheless. It got me thinking…

Some of the children I see- often those children with a syndrome or chromosomal difference- do have larger cognitive issues which affect their interaction with the world.  These problems are different than a child with autism but still can be a challenge.  The majority of the children do not have such issues.

Most of the children that I see and treat with upper extremity birth anomalies are behaviorally just like every other kid their age.  A 2- year old tantrum is the same in a child with radial deficiency as it is in a child without it.  At certain ages, however, upper extremity differences will be a challenge.  I am no psychologist (and am lucky to work with some very good ones) but I have learned of two periods of challenge for the child and family- kindergarden and 7th grade (I learned some of this at Texas Scottish Rite Hospital also). These are times of a growing self- awareness and a time when children are working to  understand who they are and where they fit in their social world.  In kindergarden, kids ask a lot of questions.  As long as the child with the difference (whatever that might be) has a response to questions from other kids, all will usually be well. Some kids say something like “God made me different” and some say “an alligator bit my hand off.”  It really doesn’t seem to matter what one says, just that the child has a response to the questions.

As a parent and a caregiver, I have learned that every child brings unique challenges and every person has “something”.  The Something is some challenge, some difficulty which may or may not be apparent.  In kids with upper extremity birth differences, the difference is physical and is visible.  It may or may not slow the child down, it may or may not allow him to play basketball or play the piano or whatever.  This difference will affect the way the child interacts with the world mainly because it affects the way the world interacts with him or her.

The other time frame which is a challenge is the 7th grade.  Again, kids are figuring out their place in the world and comparing themselves with others.  There are no easy answers to questions from others at this point and the more comfortable and confident the child with the difference is, the more successful they will be in navigating this difficult time.  Support at home is clearly important in gaining the skills to get through the questions at this age.

I hope that this post generates some thoughts from others who may well have different opinions and different feelings.  I am sure I will learn from those thoughts…


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