By: Jeannette, Parent of Connor, an 11 year old with a 16p11.2 Deletion
“Children all learn at their own pace. But do not sit back and blame everything on the diagnosis. You never know what your child is capable of until you try. “
What is your child’s relationship like with his/her siblings?
What does your family do for fun?
Camping, quad riding, bike riding, travel, watch movies, bowling
Tell us about the biggest hardship your family faces.
Dealing with the school district to get my son properly educated causes a financial hardship with costs associated with schooling, physicians and lawyers.
What about your child puts a smile on your face?
He is so caring and wants everyone to be happy. He will do silly things to make someone smile.
What motivates you to participate in research?
To learn more about his abnormality and strategies for educating and coping.
What have you learned about your child’s condition from other families?
Not too much yet.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Children all learn at their own pace. But do not sit back and blame everything on the diagnosis. You never know what your child is capable of until you try. Don’t give up educating just because you don’t think they can do. They may surprise you.
What is one question you wish researchers could answer about your child’s genetic change?
What is the best way to educate him?
Is there anything else you would like to share with other families?
Some days will be harder than others. Some days you will not understand what your child is going through or why they are angry. Some days you will need to walk away and put yourself in timeout. It’s ok!!!