Happy Easter! And Happy Autism Awareness Month! Yes, it is that time of year again!
This is the third year I have done this project and, at least for me, it just keeps getting better! I have almost completely filled up the month with these feature stories of local kids and teens on the autism spectrum and I am so excited to share their stories with everyone! You will see some familiar faces from previous years as well as a lot of new ones. Thank you to all of you that shared your stories with me, and for allowing me to share them with everyone else!
Obviously this project is special to me and super personal as I have two children that are featured. But it has morphed into so much more for me. Many families welcome me into their homes and lives to photograph their child and I get the opportunity to chat with them and get to know them. I truly feel I have made some great connections and friends through this project and widened my own village, and I hope they feel like I have widened theirs. I love hearing their stories, their concerns, their triumphs. I feel connected to every single participant, as well as their parents. I am definitely emotionally invested with them beyond this project.
I have written and re-written this entry post so many times, constantly searching for the best words. I really don't think anything could do this project justice. The stories you will read throughout April come directly from the parents and, where able, the kids themselves. As I go through getting all the posts ready, editing the photos, reading the stories, I go through a rollercoaster of emotions. I read their responses to me and see the struggles the kids and their parents have, or have had, and I hurt for them. I cry for them. Then I jump to the photos and smile, remembering the cute or funny thing that happened during their session with me.
This project started with the thought of "Autism doesn't have a look". From a picture, you cannot tell that someone has autism. People with autism are people. With likes, dislikes, hobbies, people they love, people that love them. Yes, they may be a bit different, and some things may be a bit harder for them, but at a glance, an outsider would not know. For some kids, that glance is a few seconds. For others, that glance can be spending an hour with them. After all, it is called a spectrum for a reason. This isn’t just about autism awareness, but about autism ACCEPTANCE and UNDERSTANDING. There is tons of awareness, most people have a general idea of what autism is or that it exists. What our children need is to be accepted and understood. By telling their stories, I hope that the world becomes a little more welcoming and a little less judgemental. I hope that a few more people will open their hearts to our kids and embrace them (not literally, in a metaphorical way, because they don't all like to be touched!) for who they are, differences and all.
Getting a diagnosis of any special need for your child is hard. Most of us go through the stages of grief constantly. We grieve not because we lost our child, but because we lost the future we expected for them. How many times have you heard a pregnant woman respond to "what do you hope to have?" with "As long as they are healthy!"? We grieve because life will not be easy for them, or for us. We grieve because our child has to work harder for things that come naturally to others. We live in denial for a while (they are wrong, my child will catch up), we go through anger and depression (why me? why my child? this isn't fair!), we go through bargaining (if we just do this, they will be better), we go through guilt (I did this. If I would have done x they wouldn't struggle. If I would have gotten help/intervention sooner... if I wouldn't have eaten that deli meat when I was pregnant.... and so on), and we go through acceptance (we got this. My child has autism, but with the right therapies and supports, everything will be okay. My child will be okay. I will be okay.) Of course, just like all other grief, we cycle through, there is no order.
Along with the grief, we also get to experience the greatest victories. Those little milestones that typical kids hit, they can be mountains for our kids and when they get to the top, we celebrate! Remember how excited you were when your one year old said "mom" for the first time? For some of our kids, it was many years before we heard that, and it was the best sound ever. We rejoice with a new food tried. We cry tears of joy when our late elementary aged child is FINALLY potty trained. When our child actually speaks to the receptionist at the therapy center they have been going to for four years without having to prompt them, we beam with pride and accomplishment. Parenting a special needs child is hard, but it is also incredibly rewarding.
As always, I need to make a special shout out to BisMan Autism Families. I look at that entire group as part of my village. They celebrate successes with me, they support and console when we have set backs. Without them, I would be an incredible mess (or more of a mess than I am, anyway), and I thank every one that is a member for all they have given. Advice, support, a shoulder to lean or cry on. If you are in the Bismarck/Mandan area and are raising a child with autism, or you suspect they may have autism, please join. Or you can follow the community page for public events and helpful information on autism or how to support people with autism and their families.