Autism and Keeping Hope Alive

If you follow our Facebook page, you have probably seen that we’ve been trying lots of new things this summer and most have worked out better than I could have hoped. I wish I knew why – I would gladly share it with everyone, but I don’t. My guess is probably simple maturity for Casey and Rob and the fact that life isn’t one long stressful, what’s-going-to-happen next kind of time anymore, so I’m not exhausted. We have more good days than bad – and even the bad are more “rough” than bad.

Yesterday, we went to a car show. Casey reminded me all week about it. Cory has a trans am that he shows and the kids love to go see it at shows. We weren’t there very long (honestly, while they both look at the other cars, once they see Cory’s, get a picture taken with it and buy a drink, they are ready to go). But – we went! A few years ago, I probably wouldn’t have attempted that without another adult. I simply couldn’t trust that neither would dart away – or that one would want to look at something and the other wouldn’t stand still for it.

We head to the park often to walk. We go to stores (though, honestly, if I have a long list of stuff I need, I don’t take them – finding everything and keeping them with me just takes too long! 🙂 ). Also, we tend to take up an entire aisle, as Rob holds my right hand and Casey my left elbow when we are in crowds. I keep telling them I promise not to leave them, but they feel safer holding on. They will even hold hands with each other when they are anxious – I do love seeing that! Again, a few years ago, I took them in stores only if there was a desperate need. Casey wouldn’t wait for me and Rob’s sensory issues were terrible.

I remember taking Rob to the store when he was younger. He hated the lights – the noises – almost everything about going to the store and he often hid in the cart the entire time. I think he was 8 – 9 and still climbed into the cart (in the big part, not the child seat) and pulled his coat over his head. We were in Wal-Mart one day and it was not a good one. I was tired and on the verge of tears – just wanted to get what we needed and go home.

As we passed a woman with two boys, I noticed the boys pointing at Rob and laughing. My anger flared, but Rob didn’t seem to notice so we went by. Unfortunately, we passed them in the next aisle – and one of them was dumb enough to make a loud comment about him being too big to be in the cart – was he a baby? Rob looked at the boy, back to me, and buried his head in his coat. And Mama Bear appeared.

I loudly (so the boy’s mom could hear) said ‘my son has autism and the lights in the store hurt his eyes – but people like you hurt him more! I hope you never have someone make you feel like you just did to him”. By then, his mom was coming towards us and asked what was wrong. I told her what happened and she was so angry with those boys. She gave them both hell right there and made them apologize. She was almost in tears as she promised to have another talk with them when they got home. She looked right at Rob and said she was sorry. I bet those boys don’t forget that! 🙂

Anyway – while Casey was more likely to run away from me, Rob just couldn’t handle the sensory overload. It was just easier to leave them at home. There are still days that I wouldn’t attempt to take them both to the store – if he’s already anxious or she is on edge, we stay home!

When Casey was small, we couldn’t use the AC in the car – the noise made her scream every time. There were several restaurants that we couldn’t go in because the heating/cooling noises were just too much. I couldn’t take them to a pool because she would get into other people’s coolers and he wouldn’t stay in the shallow end. Plus keeping an eye on Mandy, too. (That’s a big reason we had a backyard pool for years – I miss it so much now!)

In the last few weeks, we’ve gone to two different public pools (including the one where Rob got stung two years ago and he hasn’t been able to let go of his anxiety to go back) and enjoyed every minute. We went on a short vacation and there were no meltdowns, no anxiety. Just an amazing time. We went to a family reunion. We went to a birthday party. We went to a cookout. We’ve hiked, we’ve gone shopping – so many things that other families take for granted – we did.

I will admit – I plan like crazy for some of our outings. I try to think of everything they might need to be successful, but that’s still better than planning what we need just to do it! And I keep an eye on them constantly when we do go places. I watch for signs of anxiety in Rob and for Casey to get into things she shouldn’t. But – I can let go of their hands and I can visit with people! It took years of hard work on their part and lots of other people, but we finally can do some things. I have had so many summers that I was depressed when it was over because I didn’t think they got to do enough fun things, but this year, I think they have. And that makes me feel so good!

I want them to experience everything that they want to try. Right now, Casey is repeating Zoombezi Bay over and over and over. It’s a water park beside the zoo – I have no clue why she thinks we are going there tomorrow, as I’ve never mentioned it and honestly, don’t see us ever doing. (But I won’t say never! 🙂 ) Rob doesn’t want to go there – he wants to go to Hopewell tomorrow and is happy that he is getting what he wants.

When I think of how scary and nearly impossible it was to go so many places when they were little, it’s a miracle to me that we are able now. This is why I want you to never, ever give up hope. Your miracles will be different than ours, I’m sure, but they will happen. We’ve had so maybe little miracles in our lives!

Rob stopped “eating” his shirts! Casey stopped having meltdowns! Rob will try new foods! Casey wants to go new places! They are both sleeping (shhhhh! I don’t want to jinx that! 🙂 ) They both graduated from high school with a diploma. Rob is more wiling to go new places, with lots of supports. Casey never hurt herself when she broke windows with her head. Rob survived all of his accidents. Despite everything, Mandy grew up to love and cherish Casey and Rob (and married a guy who does the same!).

You will have little miracles, too. When you are so tired crying takes too much energy, remember that. Your happy times will be different – maybe your child finally leaves her clothes on! Or your son learns to use the potty. Maybe your child learns to say “hi” using a speech app or learns sign language. Don’t ever judge your journey by comparing to anyone else’s. Our journeys will never look like, nor will they occur on the same timeline.

Also remember that it truly is the little steps that matter. Other families may not understand my joy when Rob wears a new shirt, but that’s okay. Our life is special to us and we don’t need their joy when we have our own. I also know it’s damn hard to see any miracles at times. When your life is 24 hours of stress, it’s nearly impossible to see small steps. You want the big, huge ones! I get that – but you can’t get the big ones without the little ones and some days, a little miracle can go a long way towards bringing a smile to your face instead of tears.

I know I’ve said this many times, but please, please – never give up hope. When you are so tired you can’t see any hope, find help. There is help available (and I know how hard it is to find!) keep looking and making calls and get that help. Beg someone you trust to let you take a nap or to get groceries for you. I hate asking for help, but I do – and you need to do the same. Look for your small miracle every day as you tuck your child into bed at night (and look again every time you have to send them back to bed or remind him to stop singing Long Black Train cause Casey is trying to sleep! 🙂 )

If you are reading this and you don’t have a child with autism, maybe you could be someone else’s miracle. Offer to sit with the child while the parent takes a shower or a nap. Take lunch to someone or even send a card and tell them they are doing an awesome job! You have no idea how much random texts from friends help me some days! You can be that miracle! 🙂