Look at these two photos below. What do you see? How would you react to each child and their family if you saw each of them on the street or in a restaurant acting out of the social norms?
From my experience, you would dismiss the little girl with a bandage wrapped around her head and probably stop and say hello and/or even give a gentle nod of understanding to the parents standing beside her. As far as the girl on the right, you would probably sigh in disgust, wonder why she is acting out so rudely and then look at the parents with dismay thinking their parenting skills had fallen short. Before my little girl was born, I too would probably react similarly to my comments above.
Meet my little girl, Ashley (pictured below). She doesn't appear to be a child with special needs or have any type of disability as her appearance is much like the girl on the right; however, Ashley suffers from various neurological disorders.
There are no wraps provided to help protect her from society, nor the daily judgement she and our family receive. She doesn't wear a billboard around her neck saying "Please be gentle. Don't judge me as I struggle with a disability that is not physically visible to the human eye." She simply lives each day being the best Ashley she can be.
For years and up until this day, I have placed the blame on myself and John for the way in which Ashley behaved. We have shed a million tears, spent countless hours worrying about Ashley; protecting her from rejection and questioning why. We've reached out to therapists, schools, family and even more recently, taken parenting skills classes. We've gone from one doctor to another, had countless numbers of tests and even tried multiple types of medicine in hopes of finding the golden ticket, "the answer", taking away all the hurt, all the judgement cast upon us and provide comfort as to why.
So as the tears rolled down my face in the doctors office today, the neurologist looked at me and said, "This is not your fault. This is not her fault. You are not bad parents and your didn't do this to her." I looked over at Ashley then over at John and finally realized and truly believed what he said. After all these years, I was finally able to take the pressure off of John, Ashley and most importantly myself to fit within the social norms.
It was also in this moment I realized I no longer needed to care about what society thought of our daughter or our family. I no longer should feel the need to tell you that my daughter has special needs. We will continue to consider environments that play to her strengths; however, this is who we are and we are no longer going to avoid restaurants because our daughter cannot sit still in a chair. We are not going to stop volunteering in certain places because people see us as unfit parents and we aren't going to avoid camps and social outings for Ashley because you think she is loud and full of energy.
We are GREAT parents -- We are a fantastic and amazing family!! We care about our daughter, want the best for her and expect greatness from her! We are her parents, her mentors, her best friends and her life! What is happening in our lives is not our fault and it's not her fault!
