The most important sentence I was taught in college was, “You are your child’s best advocate.” I have repeated those words to myself after every test that was run and every doctor we visited. Those words helped me press on when we didn’t get answers and no one knew where to send us. Those words helped me pick up the phone and call our pediatrician repeatedly for a new referral because we needed answers. Those words kept me from falling apart while waiting for her to wake up from anesthesia after a MRI. I felt guilty for putting Madison through so much to find answers. I considered giving up and cancelling appointments. But, I knew she needed me. I knew she needed me to advocate for her. I knew I wasn’t sending her to school to fail, but to receive accommodations for her unique abilities. One of the doctors we visited in our journey was a pediatric neurologist. I was devastated when he told me that he has never seen this before and she will need to be in a special education class. Those are very hard words to swallow. I look at Madison’s disabilities as a blessing. I think that she has an amazing gift to see literature and art in a different view than the rest of the world. I love her uniqueness. I saved every piece of art and writing because I knew it wasn’t typical. I loved picking her up from school and finding in her backpack an upside down Spider with eight legs coming out of the spider’s head. I am perfectly okay with my child not being typical. I do not want her to feel shame for having a disability. I have decided to celebrate her rare talent and share her artwork/writing with others. It is beautiful and amazing. My hope is that parents with children will embrace their children’s disabilities and treat them as a gift. As a mom, I encourage you to never give up and remind you “YOU are your child’s best advocate.”
Why We Do This!
