Four times per year. That is 4 more times that I am reminded of how different my daughter is from her peers. The thought of her academic differences is never far from my mind but the looming day brings it all back to the forefront. I know it is coming, every 9 weeks. The brown envelope in her school folder, just waiting to be opened and read with anticipation of how the past 9 weeks have progressed.
I actually gave up on hopeful anticipation on report cards a few years ago. Abby is in the 5th grade and 11 years old, but developmentally a 6 year old. She is in her 5th grade classroom 30% of the day and in Special Education classes 70% of the day. She has Sanfilippo Syndrome and has a low IQ. She is able to learn slowly but we are just as happy to have her remain stable, where she is at developmentally. Each day that a skill, word or memory is not lost is a huge accomplishment and one we work hard to maintain.
We are so fortunate that her teachers see the big picture and do not push her too hard. They have formed bonds with her and have learned how to motivate and encourage her so that she has successes academically. We are kept informed about her progress more closely throughout the school year due to her IEP plan. Abby tries her hardest and enjoys school. She feels successful in her schoolwork and that is the most important thing for us as her parents.
As I open her back pack, the same as I do every afternoon, I see her looking at me. She really has no idea what the folder truly represents. She has no idea that some children have their privileges taken away because of what is inside of that folder. She has no idea that some parents put bumper stickers on their cars, proudly displaying that their child is on the A honor roll or that some parents share their children’s report card accomplishments on their Facebook page. I try to remind myself that I might be the same type of parent if I were not the mother of a child who is terminally ill and may not graduate or attend college.
I open the folder and read the report card. Everything looks perfect. No big grade surprises, no excessive absences. I give Abby a big hug and tell her how proud of her I am. I am so happy that she is healthy enough to still attend school. She is able to speak to me and tell me what she wants and if she is hurting. She is able to laugh, smile and play with her little sister. She is such a joyful, happy little girl, just as she should be. Other than the ultimate hope of a cure or even a treatment, what more could I ask for?
Today, life is good.
Fore more information about Abby and Sanfilippo Syndrome, please visit http://abbygracefoundation.org