February 2016 Newsletter

CP News For You!

In the Fall of 2014, my daughter, a 4th grader at the time, began to need more information about her condition.  You see, up until that point, when I discussed my daughter's condition with her, I used phrases like "you need physical therapy because you don't balance well" or "you go see the speech therapist because the muscles in your mouth are a little weak".  As with all discussions with children, one should start with little information and add as the age and maturity goes up.  Those descriptions that I used with my daughter to discuss her condition sufficed until the Fall of 2014 - at that point though - I felt that she needed to know specifically what her condition meant to her. 

My first step in addressing her increasing questions was to seek help from the school psychologist.  Through my daughter's teacher, I scheduled a meeting with the school psychologist to find out if it was the right time for me to name the condition and to discuss more details with my daughter and how much details I should discuss.  The conversation I had with the school psychologist proved invaluable to me.  I now had a plan and the plan included:

  1. Having a discussion with my daughter
  2. Going to the library to get material to support her exploration of her own condition
  3. Engaging with a psychotherapist to help my daughter address her condition in a positive way
  4. And finally, as per the psychologist's suggestion, having my daughter participate in a support group for girls who also have CP and whose condition presents itself in a similar fashion. 

The last item on the list above has been most helpful to my daughter - and by the way - contributed to the birth of this group!

The school psychologist found 3 girls in our area who shared my daughters' symptoms and presentation of CP.  We met once a month at one of our houses and the girls got to see how CP affects each of them, what support they needed, and how they feel about this support.  Most importantly though, it gave them a chance to be friends who shared a common thread.   After all, we all seek friends who are "like us" - so the ensuing friendship seemed like a natural occurrence for my daughter.  Though the group itself doesn't meet as regularly as it used to, my daughter has remained good friends with one of the girls.  In fact, I often hear; "I should talk to Jane (name changed to protect privacy) about this or that because she would understand what I am talking about."

I encourage you all to find children of the same gender and age as your child and start the process of having them meet and spend time together.  To facilitate this, you can reach out to the school psychologist or to the physical therapist at your school.  They both work with your child as well as many other children in their school and can help you put together a small group like this. 

If you are reading this newsletter, more likely you know that we tried to meet monthly but due to commitments and schedules, we have stopped meeting.  However, one of this group's members, Cindy,  would like to re-energize that process and has created a meetup group.  Cindy is very eager to meet other parents and have her son meet other children who have a common awareness.  Here is the link to her meet-up group.

If I can help any of you in this regard, please reach out to me

Happy connecting!

Mayya Saab