The Fourth, which is usually a celebratory day for me, wasn’t a happily, hopefully ever after kind of day this year. I had to forgo several of the day’s festivities because my youngest wasn’t feeling good and because of Ronan. I’d been looking forward to the holiday and spending time with my family just like scores of other families would be doing. Not wanting to point a finger at the kid, but Ronan, and how he simply cannot handle events such as the ones I wanted to attend, kept us stuck at home.
I scowled. I did. I did more than scowl too. I got really upset. Resentment fell over me as I recalled how, many years ago, we were able to go out as a family. Ronan was able to, and actually enjoyed those outings. We did it all: lunches, dinners, park dates, church as a family and even road trips! We did all that once before. Now? Unless it’s an appointment or therapy, we’re parked at home more often than not.
I don’t like it when we have to separate our family. Some of my kids get to do a __(super fun activity)__ with one parent while the other parent stays home with Ronan. Making the decision to separate has become more common as of late. Of course, whenever there is something to do out in town with Ronan, we assess the situation in the hopes that we can all do something together. Sometimes we can. Other times, it’s just not possible.
Balancing my wants and Ronan’s needs has become greater this summer, and I’m finding myself struggling more and more with it. On Thursday, knowing I’d be home with Ronan, I thought to myself, does taking a chance on bringing Ronan out into the crowds on a hot day with thousands of potential triggers worth the few minutes I might enjoy (while trying not to worry about Ronan’s dietary restrictions, wandering potential and the other what ifs that come with going out)? Does it matter if I get to watch the fireworks light up the sky with red, white and blue? Is it worth it to be upset if I miss this or if he misses it?
I could feel my resentment grow. The answer to those thoughts could all be yes. But the longer I thought about them, the answer to all of them was a big fat no.
As quickly as I allowed myself to be upset, I had to let it go. I needed to because being disappointed about missing an afternoon get together leading up to a 15-minute fireworks display is just a blip on the radar of my life. And it pales in comparison of what Ronan and I could do with our day instead.
As I changed my attitude, I decided that Thursday would just be a typical Thursday for us—a regular day that I knew Ronan could be successful at handling. So, we caught up on some ABA homework. We practiced following directions. We made a fun plate of snacks—piled with things he didn’t have to share with a sibling (or 4). We played Wii together. When he needed a break, Ronan listened to his music—the music that soothes his entire being but can get super annoying to a pesky sister who doesn’t want to hear the same song for the 1,000 time. With fewer distractions, Ronan used great communication with signing and with typing his wants. As the day turned into night, we snuggled on the couch. We watched a movie that sustained Ronan’s attention for almost 45 minutes! At bedtime Ronan looked like he was at peace and was full of hugs and smiles. After reading the favorite pages of his book, and after getting Ronan’s cozy blanket for him, I said good night and I love you. Ronan put his hand to his mouth and blew me a kiss.
In the long run, staying home was the right choice. Ronan didn’t have any food infractions that would cause a middle-of-the-night wake up. He didn’t get overwhelmed or overheated by the hot, hot sun that blazed all day on the Fourth of July. He was not jacked up from the over-stimulating sights and sounds of fireworks or from being out well past his bedtime. And, most importantly, he did not discover the path to a pond that my husband and my kids walked past as they went to watch the neighborhood fireworks. With his wandering tendencies, we never want Ronan to find that pond. The bonus? The next morning, Ronan woke up happy and was able to enjoy another typical day which he handled well again.
I could have stayed mad and frustrated all day long. I could have kept my sourpuss face on and let everyone else know how frustrated I was. It wouldn’t have done me, Ronan or anyone who tried to come near me any good. Dwelling on what I couldn’t do because of what Ronan physically wouldn’t be able to handle would’ve been the greatest insult to a little boy who tries so hard to live in a body that doesn’t work as quite as he’d like. It may not always be that way, which is why I’m never going to give up. Instead, I’m always going to hope for the best. I’m going to make every effort I can. I’m going to love Ronan for who he is now and for who he’ll be later. It’s in making Ronan’s good days great and turning his bad days into a better ones that I find motivation to stay true to my son. As long as he is dependent on me, I’ll pray that I do the right thing. I’ll also pray that every day be full of opportunities, opportunities for us to learn, to grow and on some days, to just be.
Cathy Jameson is a Contributing Editor for Age of Autism.