Each day gives us an opportunity to learn and grow. As I drove with my mother this morning recalling the past 24 hours I realized this journey I am on, I wouldn't wish it on anyone else. Its hard. It impacts you as a parent. It impacts your marriage. It impacts your family, your children as siblings and individually. It is a lot. That being said, I wouldn't change it. This child has changed our world and I don't believe that we were chosen to welcome her without purpose.
Today as I messaged a new follower to our Facebook Page, I simply let them know, "I pledge not to live this without making it better for someone [else].
I am a firm believer in faith, family and the ability to give all we have to benefit those around us, intimately and peripherally. I believe that, our lives are not ours to live without divine guidance from above. With my daughter, my family has the ability to make a change for others. Locally and potentially in a greater capacity, if that is the path that is chosen.
Yesterday we visited Rutgers. I was honored to help out with the ADOS administration where individuals witnessed my daughter experiencing the testing as a subject. I did it not for her to be on stage or used as a puppet but to further others understanding and experience as advocates and practitioners. I believe that knowledge is power and the more we share the better our world will be for children who follow in our daughters footsteps on the autism spectrum. Seraphina did a brilliant job of sharing how difficult it can be to take data and score a child on the spectrum while engaging and interacting with the child as an administrator of the test. As I watched and at times felt a little embarrassed, I also saw eyes light up, connections be made, and a greater understanding of administration of this test because a university is dedicated to making tomorrow better for patients like Seraphina to be diagnosed, receive services and be accepted for the person they were created to be.
When push came to shove the ADOS indicated Seraphina had autism. Many people ask if she's Level 1, Level 2 or Level 3, others want to know if she is low functioning, high functioning or moderately impacted by autism?
Truth is, she is Seraphina. Autism impacts her. Yesterday she struggled to sit at a table in a restaurant with family she hadn't seen in over a year, much like any 6 year old might but then at the end of the day she was secure and willing to give hugs and tell her "other nana" that she "loved her too". As she ate, she realized the pizza that our local shop usually provides was better than that of the one placed in front of her and while the one at the new pizza shop was "not going to work" she was willing to try penne vodka which she had never tried before.
She also slept in a hotel for the first time in over a year. As she carefully tucked in her babies, she made sure that they were loved, something that books may say kids on the spectrum struggle with. She slept soundly, until she didn't when she communicated that she was "just a little bit scared". So her buddies had a bed to themselves while three of us snuggled together under the covers.
Today, as we walked through a new market, there were sights, smells and sounds that she had never seen. It was crowded, in a town we had never visited and when a woman of Amish decent decided she wanted to ask questions, Seraphina carefully answered. She tried. I watched as she painfully looked and wanted to make eye contact. She knew what she was "supposed" to do but still feared doing what felt so wrong for her. As I chatted, the wonderful Amish Woman asked about Autism, its cause and in the end noted she'd pray for Seraphina and for me.
As we drove home, my heart was heavy. I felt angry and frustrated. My child, the gorgeous girl she is often is limited by tests or labels. She's noted as mild, moderate or severe but reality is she is so much more than any one test could identify.
She is a sister. The youngest of 6 who are committed to her growth and her development. She is truly loved by her siblings and more than that, her friends. As I told my aunt today, this is our home. Not for the structure we sleep under but for those that choose to love and support us and honestly, Seraphina is the reason we have what we do.
Sure, Physicians, clinicians and others have to test and identify individuals as mild, moderate or severe but reality is that my daughter, though autistic, needs no leveling, she is who she is. A child. A sister. A daughter. An empath. An individual who enjoys social interactions, who is bright and willing to learn and so much more than anything that we as human kind can pinpoint. It is my hope that we as individuals, communities and institutions can develop an understanding of others with neurodiversity that accepts that we are all different and unique and have the opportunity to make each others lives better than they were before we entered into them.