We went to Kennedy Krieger’s Festival of Trees today. We have been doing this annually for as long as I can remember. The Festival of Trees is touted as “If Santa had a playground, this would be it!” Truly it is. There are rides, games, food, crafts, and, of course, lots and lots of Christmas trees. It is noisy. It is chaotic. It is crowded. It is sensory overload but, for Debbie, it’s a lot of fun.
Debbie truly led the way today. We followed her from line to line. She sat on Santa’s lap AND talked to him. She went through the Fun House all by herself, not once but twice. I realized, after I went through with her the first time, that she didn’t need me to go. She understood that the carousel was broken and therefore, she couldn’t ride it. This was an a-ha moment for me. She has grown and matured since first being diagnosed with Autism. And, I wish I could say that it was always this pleasant, that it was always this easy. However, I would be lying to myself and to you if I said that was true.
It’s amazing how time can alter your perspective on life. When I first began the Autism Journey with Debbie, I was in denial. I was angry and I was frustrated. I was determined to lead a “normal” life and nothing, including Autism, was going to get in my way.
In 2008, just a few short months after Debbie was officially diagnosed with Autism, we went to an event for Make-A-Wish. Similar to the Festival of Trees, it was noisy, chaotic, and crowded. It was supposed to be fun, but it was not. I ended up writing a Facebook Note about what happened that day. I was a different person in a different place. Debbie was a different person in a different place. The only thing that has remained the same is Autism.
Autism Sucks, Blows, Frustrates, You name the feeling!
So usually I keep my issues about Debbie and her autism to myself. Usually I suck it up and swallow it and let it go, especially after she had Cancer two years ago. Everything else should be easy, right? But sometimes, Debbie’s autism is so fucking frustrating! We went to the airport tonight to go visit Santa. Johns Hopkins set the whole observatory deck up like the North Pole. There was food, presents, crafts, and songs. There was also a piano player and Debbie LOVES to play the piano. However, the whole thing spiraled into an abysmal mess when we told Debbie that she couldn’t play the piano. Biggest tantrum on this side of the US over not being able to play a g-d damn piano! Then the clapping over the Barber Shop Quartet’s performance starts. Of all the sounds that make Debbie lose it the most, it’s clapping. Does anyone know how an integral part of regular life clapping is?! So now in addition to not being allowed to play the piano, people are clapping every five minutes. Vince was covered in snot. We were both smacked. It was wonderful. The thing of this is, is that Debbie was actually excited about going to see Santa. But because she had a home run of a tantrum, she wouldn’t even look at the guy! After reading over this, it sounds pretty trivial but when everyone around you including children who may not be here next year and everyone else is actually smiling and having the great time they are supposed to be having and certainly deserve and my daughter was miserable and I’m pissed because this is probably the thousandth time she has turned this kind of what is supposed to be a fun situation into a hellish situation, not to mention embarrassed because I feel like the whole world is staring, it’s SO FRUSTRATING!!!!!!!!! And of course now she is quite fine because we are home. Debbie actually just came up to me to get on the computer. I said, “No!” What does the child do? She kisses me not once but several times! Only with Autism.
Only six short years ago this was where we were. I didn’t understand Autism. I certainly didn’t accept Autism. In fact, I didn’t want anything to do with Autism. But, that was then and this is now.
If you are beginning your journey with Autism, it is okay to be angry. It is okay to cry and it is okay to yell. You and your child will get through it together. One day you will wake up and you will accept Autism. You won’t always like it, but you will accept it. The impossible will become possible. Challenges will be overcome. Hurdles will be jumped. Anger will give way to acceptance. Walt Disney once said, “If you can dream it, you can do it.” Dream the impossible dream, my friends. It will come true!