When Zane was born I had been in labor with him after my water broke for roughly 31 hours. I had developed a fever, however, they were pretty sure he was fine. Due to my fever they warned me that as soon as he came they would immediately take him to the NICU to observe him and make sure he was doing well.
I remember going to the NICU partly sad I didn't get the typical experience with him snuggling with us immediately, but I also understood the importance of the precaution. As we scrubbed up and went into this intense and sterile area I passed by the smallest of babies. My heart broke a little with each little baby I passed realizing some were barely holding on to life. All the while my heart still ached for concern of each baby in there (and the their famlies). By the time I got to Zane I was overcome with gratitude (selfishly?) that our situation was not critical. It was not ideal for what you imagine your entry into parenthood to be, but I had been given the gift of perspective and compassion each and every time I went to see my healthy baby in the NICU.
In the final weeks of Kindergarten last year Zane had been mainstreamed into a typical class. I still kept in close contact with the special autism teacher and will forever have a special place in my heart for her. She invited the parents and mainstreamed kids to attend a class party at the end of the year in her room. As I sat there watching the differences in each child I immediately loved them. And their parents. I felt like we were all part of an unspoken club of understanding. Like our hearts were already friends and none of us needed to shake hands or make introductions.
It was also like the NICU experience, many of the children I observed on my way to Zane were not like him and appeared to have greater challenges. Their autism was highly visible in many ways, while Zane's is not. I left the party the same way I left the NICU 5 years before: grateful for the perspective offered to me while I pieced together and swallowed this new-to-me-world.
I will write about Toyko this week and share photos, but first I have to write about this amazing book I read: The Year My Son and I Were Born by Kathryn Soper. It's about a mother discovering the different-than-expected life her family will have with her Down Syndrome baby. I think anyone with a special needs child (be it slight or severe) would LOVE and relate to this book. She is a gifted writer, honest in her feelings, and raw with change of heart. I could not put it down. And I hate reading.
The book had me thinking deeply about my journey with my own son and what autism means to our family, to me as a mother, and to Zane. It made me feel normal and comforted by the various feelings, thoughts, and worries I had as Zane was diagnosed this time last year. Looking back, I can see it was a way heavier experience than I realized at the time and I kept a lot of those feelings and that heaviness inside. Blocked everyone else out. It was more than I could bear alone. And it crushed me. I wish I had this book then.
Today I hardly think about autism spectrum disorder, he is just Zane. Unless it's a therapist or new person in charge of his care, it's not something I think about nonstop like I did last year. How wonderful time, knowledge, and help has been to me.
As I attended and observed in his autism class last year I got to meet other kids like Zane. It was another opportunity (like in the NICU) to be given the gift of compassion and perspective. Some children were a lot more visibly autistic while some were higher functioning than him. While I wished that no one in that room had to know and experience the world of autism, I felt like those early days in the NICU when I was uncertain of what would come next and how to mother this special person, but also so grateful he was and is truly fine. And just like my feelings of fear and uncertainty when I would approach my tiny little baby in that sterile little room, I approached autism (when it was new) with the same kind of feelings at first. A lot uncertain and fearful. But in both instances, I knew and know we are blessed and guided in this life as we lead each of our little souls back to our Heavenly Father.
* If you have a friend with a special needs child send them this book. Especially if a diagnosis is very new.
** You can also borrow my copy to read!