Autism Apples Koolaid

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!

When you are a parent, sometimes, you forget about all of the little things your child is learning every day. You think about the big things – first steps, first words, potty training and you forget to cheer when your child holds a door for someone or helps without being asked. When you are a parent of a special needs child, those little things are often what you notice first. With autism, you don’t take any new skill for granted. This was a week of little steps for us and this is one excited autism mom.

As many of you know, I injured my foot several months ago and am still trying to stay off of it and get it to heal. Things have been done a lot differently around here because I am simply not able to get up and down stairs or jump in the car whenever we want to. Casey and Rob have taken it all in stride and they have grown so much in their self-confidence and awareness of the needs of others (which isn’t easy for anyone, but when you add in autism… you get the picture!)

They are taking turns bringing the trash cans to the house after the trash is picked up. She is even more determined to help with the laundry and is even folding everyone else’s, too. He has been sitting in the living room with me to keep me company. They are taking care of their rooms with fewer reminders. Both of them carry things for me or will go get something if I need it.

Casey will be singing in a talent show Friday and, of course, needs a new shirt for it. I told her we would go shopping the week after her birthday so she could spend birthday money, too. My mom took us early in the week. I hated the idea, but I took my knee scooter, too, so I could keep weight off of my foot. (Crutches are not my friend! 🙂 ) Rob carried it out to the car and loaded it for me and at each store, he went right to the trunk, unloaded it, and brought it to me. (Well, there was one place that he was so excited to get in the store that he left the scooter behind the car instead of bringing to me, but hey – Dollar Tree is exciting, you know! 🙂 ) He put it away each time, too. I am so proud of him and he was proud of himself for helping me.

Casey carefully picked out the perfect shirt and a few others. She even put back the $20 pack of socks when I told her it was too much. He stood and made faces at himself in a mirror while he waited for her to finish shopping. He even agreed to purchase a new shirt for himself! And when we stopped to eat, it was amazing to see them both read the menu to see what they wanted and then tell the waitress. (He tries to get me to do it, but he will if I remind him that he can talk to her.)

Wednesday was a big one, though! They were supposed to go out to eat with their day hab and then go to the Dollar Tree. Rob put his new shirt on without being asked! And even when Rob knows they are eating out, he insists on taking his lunchbox with him. It’s almost like a security thing with him. So I pack a few things and let him carry it. That day, though! Once he heard they were going out to eat, he put his lunchbox in the pantry and sat down to wait for their ride. I was so excited and praising him – he looked at me like I was crazy, of course, but I don’t care. He even picked up a dollar to take so he could go shopping. (He rarely thinks about needing money – someone always has it for him) I told him I had already sent money and that he didn’t need to worry about it.

Here’s the thing. Typical parents may not notice things like this. But – autism parents do! We celebrate every single little step and tell everyone about it. Some days are tough, I know, and you might spend more time thinking about what your child can’t do than what he/she can. Been there, done that.

But – celebrating these little things is important! Yell it from the roof tops! I don’t care if your child is 30 when they say Mom for the first time – it’s just as important and exciting as a baby saying it. You deserve to brag about your child as much as everyone else! Celebrating every little step will help you get through those tougher days. Always focus on what your child can do and not what they can’t. You can always work on those goals, but you’ll be happier if you focus on the good and not the bad. Always keep hope alive.

A few days ago, we celebrated Casey’s birthday and, as always, it’s a time that reminds me just how far she has come in her journey with autism. She was evaluated at a children’s hospital when she was three, but we never got a report from them, despite many, many phone calls. So she was 4 when she officially got her diagnosis.

And here we are – 30 years later! Oh my gosh – to write that makes it sound like an eternity and some days, it felt like it, too. She has gone from barely speaking to able, most of the time, to tell me what she wants or needs. (She really sees no point in casual conversation, though). She has gone from being a runner who could disappear in seconds to being able to go shopping and even look at items on her own (with someone very close by!). She has gone from screaming meltdowns that could last hours to maybe one a year – and she is usually able to calm herself before getting out of control. (Or at least tell me what’s wrong and ask for help before she gets too upset).

She loves going places and will try anything. She still isn’t a fan of crowds, but since I’m not either, that could be a family trait and not her autism. 🙂 She looks people in the eye for a few seconds. Her memory is still amazing – and a little scary at times. (I asked her last summer what year she, Mandy and Rob painted a set of snowmen for me and she knew the day and date.)

Here’s the thing. She still has autism. She still struggles with sleep at times and she will overeat if given the chance. She doesn’t like certain noises and she needs lots of blankets to feel safe. Her sensory needs aren’t as strong as Rob’s but they are there. I’ve heard a few times that she is cured. No – she isn’t. She can’t be trusted to keep herself safe. She has definite needs – but she is also one of the most amazing young women I know.

Casey has always had very definite plans for her birthday. If you look at pictures of her from birthdays when she was little (or even 6 – 7 years ago) it wasn’t often you would see a true smile on her face. She will do a goofy “say cheese” smile but it rarely reached her eyes. She needed everything to happen and she couldn’t be relaxed about it. She opened presents without smiles, she blew out candles without a smile. She ate cake and disappeared in her room away from everyone.

Now, though – she can truly enjoy her birthday. She finally understands that plans can change and the day can be what makes her happy. This year, instead of cake, she wanted cookies and sherbet. So I stuck a few candles in a container of sherbet and we sang Happy Birthday (she sang, too!) to her. She smiled at every present and was excited to get money to go shopping. (Which she has asked about every day since!) She was thrilled with tie dyed PJs and tennis shoes. And she was even happier to discover that she got another “da biggest Cookie Monster” (I think she has 5 now – all the same)

But the best part was to see her excitement with a cream stick for breakfast and Arby for supper (she picks the place) and that she had two parties and all of her family around her. She isn’t afraid of being the center of attention anymore. And that makes this mom so happy. She still has the same sweet smile she had as a toddler and the room lights up when she smiles.

Celebrate all of the little steps that make huge changes in your child’s life. It may take years, but those little steps are just as important as the big ones. Sometimes, we forget that.