I'm going to start this entry with a short disclaimer: I fully recognize that the challenges we face with our son are on the mild end of the spectrum. On a daily basis, I give thanks that we were dealt the problems that we were and not something more serious like cancer, or Downs Syndrome, or cerebral palsy. In comparison, our challenges are minor. I purposely follow "Hope for Harper" and "Prayers for LEAH" to remind me that we are indeed blessed. On the bad days though, it doesn't matter how mild the disorder, on those days the not knowing, and the not knowing how to help, are completely exhausting and emotionally draining.
I have alluded to our son's "Rainman" episodes on more than one occasion. It is my sick sense of humor trying to cope with something that is completely beyond reason. He fixates on an issue or phrase or situation and can't let go. In those moments, he is unreasonable. Logic does not prevail. It doesn't even come into play. His eyes get this glazed over appearance. Over and over and over, he states repetitively the same statements or phrases. Attempts to distract or move him in a different direction are useless. All the tricks and skills and even gimmicks that we have learned over the years to help him focus or move forward with his day, do not work in these moments, on these days.
Last night, he was tired. Really tired. We were sitting around the campfire in our backyard. He had asked to go in to bed to read the latest "Junie B. Jones" story that we were reading at bedtime. As I read the story to him, cuddled in bed, he was starting to doze. He was tired. When the chapter was over and we finished our prayers, it occurred to him that his brother was still outside at the campfire. His thirteen year old brother usually "goes to bed" when he does. During the school year, it is our policy that the boys need to be on the second floor doing something quiet by 8 pm. Although our oldest is quickly approaching fourteen years old, he never complains about this rule because he knows it makes our lives easier. Tonight, I told our youngest that his brother would be in to bed in a little bit. He was old enough that he could stay up for a little bit yet. I also told him that his brother would be sure to come in and give him and kiss and hug before he went to bed. This was the final straw in a day that had been leading to this moment.
Our son had been having one of those days. It was one of those days in which he was prone to repetitive phrases, repeated behaviors, or failing to let go of a topic or an idea. He has also been stuttering and blocking quite significantly lately. It's probably the worst I've seen it for a very long time. The result has been a child prone to frustration. In spite of that, he's been maintaining pretty well. We've tried to keep him in a routine because that helps but it's also summer. We all need to relax and unwind a little. Today was the perfect storm of scenarios. He was tired. We changed our routine from what was expected and "normal". He was in a fixated, repetitive frame of mind. The combination resulted in a full blown "Rainman meltdown".
I've experienced these for years with him. They aren't anything new or unusual in our world. They don't happen frequently but when they do they are significant and they are exhausting. What struck me so hard this time was my complete failure to see it coming. I was taking a stand for our oldest son who gives so much of himself to help make our life with our youngest son successful. He rarely complains and usually helps and cooperates without a bat of an eye. It was the start of summer and darn it all, the poor kid is almost in high school. He deserves to stay up a little later. Our youngest just needs to adjust. That's what was going through my head at the time. Unfortunately, our youngest can't just adjust. Adjusting is very difficult. Change is difficult, especially when he is already struggling to talk and express himself. Especially when he is already frustrated with himself and his mother who continues to try to control the environment to help him be successful. Especially when he doesn't want things to change because it's one more thing he has no control over.
I tried all the tricks to help him cope. I tried all the gimmicks, logic, and conversations. Nothing. I finally walked away. I gave him a clear expectation and a clear consequence. Guess how that worked. Yeah. That well. His father attempted to intervene. After twenty minutes with no progress and continued crying and venting of frustration, I tagged him back out. After an additional twenty minutes, I stated the clear consequences for his behavior/tantrum and called our oldest to bed. An hour had passed and he was tired and needed to be in bed anyway.
I'd love to say that there was a happy ending. There wasn't. I don't know how to deal with these episodes. I don't know how to break him out of his fixated state. I don't know what to do. Neither does he. That's just it. He doesn't know what to do with himself during those moments either. He is frustrated and angry and sad and doesn't know how to express it or what to say. He feels locked inside of himself and feels like no one can hear him. We don't know how to cope in those moments.
So today, we had an electronics free day. No Kindles, or computers, or TV. He did pretty well. He never asked for any of those things. At the end of the day, he asked if he could have them back tomorrow. I explained that he could if he went to bed when expected without any tantrums. Even though he was verbally manic all day, even though he bounced from activity to activity without purpose or reason, and even though he displayed repetitive behaviors and phrasing, we didn't have any "Rainman" episodes. Why? Why do they happen some days but not others? Why can I prevent them some days but not others? I don't know. I have to remind myself that he doesn't either.
I coped by having a good long hard cry out by the campfire when he was finally settled into bed for the night. My husband and I discussed how we handled it and what to do now and in the future. A friend listened when I just needed someone to talk to and to be silly with. All we can do for now is take it one day at a time and give it to the Lord. I pray He has a plan. I pray He helps me to continue to have patience and fortitude and strength to make it through another day. I pray that I can be the mom he needs me to be even when he doesn't think I am.
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