Life is Brutiful

A couple situations have occurred recently (two just this morning) that serve as good examples of daily life with Myles. I want to document them to increase others’ understanding of our life, but more so for a future reminder to myself. As Myles makes progress, which he is continually doing, situations like these may become a thing of the past, and I like to remind myself how far we have come.

While Myles is our heart and soul, and such an amazing kid, living life with him can be frustrating, for both him and us. Some of it is due to his cognitive disability, decreased impulse control, and limited executive functioning. But most of it stems from communication struggles, which have less to do with his cognition, and much more to do with his delayed expressive language. Myles is a smart kid trapped inside a body and mind that won’t always work the way he wants them to. Although he knows what he is trying to communicate, the message can’t make its way clearly from his brain to his mouth, leaving him with no words. He has augmented his communication to include approximations, signs, gestures, and still uses his electronic communication device, but none of these other strategies can completely fill the void of having such limited ability to talk.

At breakfast this morning I dished up Myles his usual vanilla yogurt (he has vanilla yogurt and toast everyday), and gave Sydney and Ryker a container of flavored yogurt. It’s somewhat unusual for me to buy individual containers of yogurt, as we typically just get a bulk container and scoop them out a bowl of the same kind. Historically, Myles has not liked the flavored varieties, so I gave him vanilla while the others got their own container. Myles refused to come to the counter and pushed the yogurt away to the point that it almost fell onto the floor. Cue Not-Happy-Mama. I thought Myles was frustrated that I wasn’t allowing him to have the iPad during breakfast. This would be a typical thing he would be annoyed with, and a typical response would be to refuse to come to the table. I harped on him many times to sit and eat. Eventually, after Sydney and Ryker were finished, and I had instructed Myles over and over to come, he picked up Ryker’s spoon and started to scrape the remaining flavored yogurt out to eat. It clicked then as it often does in a simple moment. Myles wanted the same yogurt as his siblings. Cue the Feeling-Guilty-Mama. I apologized to Myles that I didn’t understand what he wanted (the part that always makes me want to cry), and opened up another container of the flavored variety, which Myles happily sat for, and he proceeded to finish his whole breakfast without incident. I was a little surprised that Myles didn’t indicate earlier that he wanted the other yogurt variety. Even with limited language, he can be a very effective communicator. But I think he gets tired and frustrated with it too, and sometimes it’s easier to sit and be sad than it is to be persistent (especially when your mom is harping on you).

Awhile later, Gilby had left with the younger two and Myles and I were waiting for the school bus. After he was all ready to go, he wandered back up to his room. I asked him a few different times to come down as I expected the bus to arrive any minute. At one point, he came out of his room with a pair of shorts and held them up as if to tell me what he was doing. I assumed he was changing clothes, because again, that would be a typical Myles thing to do. I yelled up that he needed to stay in pants because it was too cold for shorts, and he had to come down now before the bus arrived. I reminded him to be a good listener, yada yada yada. He still didn’t come, so I went up to redirect him back downstairs as I assumed he just wasn’t listening to me (par for the course with him). When I got up to his room, I realized he had taken a pile of his clean, folded clothes from our room and was putting them away in his dresser, even in all of the right drawers. He was actually being extremely sweet, independent, and helpful. I praised him for being a good helper, but still felt guilty that just a moment earlier I couldn’t understand my own child. With a simple statement like, “Coming Mom, I’m putting my clothes away first,” that I’m not sure when or if Myles will ever be able to say, the whole situation would have been different.

And a third example - a bit more lighthearted and comical. These types of situations happen all the time and I have to laugh, just because. Myles has given me a gift in helping me to not take anything in life too seriously, even myself, or my attempts to keep my house clean and the paper towels on the actual paper towel holder...

See the drop of water on the booster seat in the top picture? Myles wanted to help clean it up, so he went to grab a paper towel, or two, or even just the whole roll. Whatever works, Buddy.

This sort of thing actually makes up most of our days. Stories we can look back on that become funny, even if they didn't seem so in the moment. 

At times, parenting each of my kids is hard, exhausting, leaves me impatient, selfish, worried, anxious, and guilt-ridden, but parenting Myles has taken each of those things to a greater level. As I have stated before, the journey may never be easy, but it is always worth it. An author I like says that life is both Beautiful and Brutal, it’s Brutiful.