I’m sure I’ve shared before that Casey loves to sing in our county board of DD talent show each year. This year, the talent show included a visual arts part, too. (The talent show was virtual the last few years.) I asked Rob if he wanted to paint one of his cars to display. He wasn’t sure, at first, but earlier this week, I told him if he was going to paint a car, he needed to do it. And he painted for nearly two hours – everything I could find that he might like. Honestly, with everything they deal with every day, Casey and Rob are much braver than I am.
Casey got up early Friday because she was so excited about singing. He wasn’t excited – he was concerned about taking his cars. He was worried that he wouldn’t be able to bring them home with him. Once I explained we would put them on a table and let people look at them and bring them home when Casey was done singing, he was okay with taking them. She was getting ready when he finally got excited.
And by excited, I mean, he asked every minute or so about Mandy, Cory, Grandma Rose and Grandpa Mack. I had to tell him over and over that Mandy and Cory would pick us up and that Grandma and Grandpa would meet us at the school. He was getting anxious again about taking his cars, but as soon as they got to our house, he grabbed the box and went out the door.
The gym was getting crowded, but they both happily sat down and waited. As we waited for it to start, I couldn’t help thinking how absolutely amazing it was to watch them. So many people knew them and I didn’t have to worry about them wandering off. They both walked over to say hi to other family members and came back. It doesn’t seem like that long ago that I wouldn’t have dared let them get that far away from me.
Even when it started getting noisy, they both kept smiling. And again, I thought how not so long ago, a crowd like this would have been impossible for either of them. Both would have been running away or yelling. Right then, I didn’t care about the talent show or anything else – I just watched the two of them sit together and enjoy themselves. Even when the lights got dark, they kept smiling.
Casey was the third one to sing and she had a huge smile on her face the whole time. the first time she did show, you could see how nervous she was. She didn’t smile and she didn’t look at anyone. Now, several years later, she smiled the whole song and looked around the crowd for the people she knows and loves. (I was sitting on the floor near the stage, taking pics of everyone and she looked at me often) She swayed back and forth as she sang and when she was done, she flashed an even bigger grin before she left the stage.
I heard Rob talking once or twice, but nothing very loud. He was watching the singers with a smile. (I wish I could get him to sing. He has an awesome voice, like she does, but rarely lets anyone hear him!) Listening to everyone sing, I thought again about how much they have changed.
Who would have thought the little girl screaming and banging her head because it was a snow day would some day be singing on stage? Who could have imagined that the little boy who went everywhere with ear protection and hated crowds when sit for over an hour in a crowd to watch his sister? Who could have dreamed that she would be able to listen for her name, go up on stage alone, sing and go sit back down? Who could have thought he would be able to go to the bathroom by himself and come back to us?
Autism is not an easy journey. Anyone who tells you that is lying. Some days just suck. And some days suck more than others. But – please – even during those days that suck, try to keep dreaming for your child. Many people that see Casey today comment that she has “easy” autism (yeah – no clue what that is, but I’ve heard it many times). Rob, on the other hand, makes people nervous. I guess his size and that he talks less than she does. So, he is “hard.”
I wish those people who say she is easy could have seen her when she was little and every single day brought a new struggle for her. Changes in routine, not being able to tell me what she needed, sensory issues – the list goes on and on and meltdowns were a daily part of our lives. Rob had his struggles, too – just different ones than she did, of course. When I had time to think, I wondered how we would make it. I knew I couldn’t keep doing that for years – what then? There were some black days.
And that’s why we want to tell you to have hope! Stay strong. Keep dreaming. We didn’t have a magic pill that took our struggles away. We just kept working at their needs and trying new things. I kept hoping for the best and reaching for stars for them. (No, I’m not some “Life is unicorns and rainbows” person – I made a lot of mistakes. I yelled, I cried. I said I was done. I cussed. I yelled and cried some more. But – we kept going through her yells, my yells and his squeals – that’s all I’m trying to tell you.)
As for the talent show, Rob won the “Most Unique Art” trophy and Casey won the “People’s Choice – Singing” trophy. They were both happy and excited. He put his trophy on a shelf in his room before he even took his coat off! She added hers to the rest of her singing awards. 🙂
So – never give up. Yell, if you want (preferably where your child can’t hear you). Cry, if you need. Cuss if it helps. But, never, ever think that your tough days will last forever. Only God knows what your child is capable of – keep dreaming, keep planning, keep your faith that tomorrow will be a better day!