On August 27,1996 I was blessed with a second beautiful daughter by C-Section. I barely held her for the first time and the doctors took her away from me due to breathing issues. Within 10 hours, a cardiologist approaches me to discuss open heart surgery for Polly, my motherly instinct told me something different so I ask she be moved to a University of Ann Arbor which specializes in cardiology. To the cardiologist’s surprise Polly had a murmur and did not need the surgery. For me this was the turning point that I need to speak up for Polly. After 10 days, she was sent home with NG feeding tube and I asked the doctor’s what had caused the breathing issues and why were her lungs underdeveloped? The doctor handed me a book about Down syndrome and said these are common for kids with Downs. It was pretty interesting that I was sent home with an infant with feeding tube and have never heard what Down syndrome is; I did a lot of research and study.
In June 2006, I got a call stating I got selected to be in the “Partner in Policy Making” class. This was a life changing class for me; I made the best friends at this class. This class taught me all I need to know about advocacy.
As Polly was growing, I realized she needs more
services and I need to reach out and ask for services and put my
advocacy skills to work. I started building relationships with the
legislators, added them to my Face Book as friends, this has really
helped make the relations stronger.
In 2010 I approached my Senator asking if Polly could be a Page for him and I would be with her to support her. What better way to let the legislators know about our kids than having them right at the capitol while they are in session. To my surprise he was very open to trying it , I approached the her middle school to see if they would be open to sending the parapro to the Capitol as I wanted this to be a team effort. School got back to me after couple of days and agreed to send the parapro to the capitol with Polly. Polly, parapro and I were at the capitol and after taking a couple of requests to the senators in session, most of them knew Polly by name and were ready to take note she took in, it was just beautiful to watch.
Polly continued to be a page in 2011 and 2012, in 2012 I decided to do it on the House side as well. House was little tricky as the speaker was not prepared for a aide to walk with Polly, I was surprised that Polly was the first kid with special needs to be a page on the house side. Special Thanks to my representative B.J.Pak he added accommodations and modifications to the page; representative will find a person from his/her office to help your child while they are performing page duties.
I encourage all the parents to give their kids this experience, this will also help in the long run as now legislators have a face when they are passing a bill that affects our kids.