Sweet, Sour, and Everything Between

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My husband and I call our disabled child the “Sour Patch Kid.” If you have seen the commericals, you will know why. The slogan for the candy is, “sweet on one side, sour on the other” and their commercials usually show one of the little candy kids getting into trouble followed by a cute hug or something similar. I believe my son has studied these commercials in depth so he can perfect the art of the dual personality.

Typically he saves his sour behavior for home. From the time he started early education (at 4 months – he’s been working at it a long time) he was often praised for his good behavior while at school. My earliest memory of his “patchy” behavior began in the first year of early intervention. One of the biggest issues I saw at home would be him beating his head on the floor. I would take him to class and discuss the matter with the therapy staff and they could not believe he would exhibit that behavior. He would continue to do exceptionally at school and when we got home, he would be at it again. Even as he got older, he would have the staff wrapped around his finger and again when he got home, he’d do something like whack me. We have discipline in place and he sometimes ends up in time-out frequently. Most of the time it helps to curb his behavioral problems but he is continually testing the water with me. Today for example, we were waiting for his bus and it was running late. He was waiting inside dressed in his outerwear. I know it can be hard for him to understand why he has to wear it when he feels like he is going nowhere. He had taken off his gloves numerous times, threw his hat, jumped on his sister and other little things to show his displeasure of having to feel like a penguin. I sat him in time-out twice and the last time he sat he was working at taking his gloves off again. I reminded him that I wanted the gloves on his hands and he needed to behave. (I should mention the bus was a half-hour late). He didn’t like the whole morning and head-butted me in the face. I have a high tolerance for all kinds of ill behavior but getting hit in the face in any capacity is my least favorite. He got more time on the timer for hitting his mom. Shortly after, the bus finally arrived. He gets to the bus and out comes his sweet side. “Sigh.” Fast forward to this afternoon, the bus pulls up and he is happily calling for me. He waves goodbye to his friends and jumps in excitement as the bus pulls away. On the way back to the front door, he whacks me. “Really, little dude?”

This behavior has baffled us since he started showing signs of behavioral issues. We were assured it is normal but no one has any real advice. They refer to the period of time before the kids are ill behaved at school as a honeymoon phase because they eventually start the same problems at school. I am thankful that has not been the case with my little guy. He is still just as sweet as can be while he is at school and much more rotten for me. It is sad because I often feel like everyone else gets the best of him. The most frustrating thing is hearing from family how well he behaved he was until we walked in the door. That comment happens a lot and we always have the same answer as to why it happens. “We don’t know. We are just as lost as you.” We have no answers, just theories.

On top of trying to unravel his medical issues, we have the behavioral problems as the cherry on top. It’s daunting. Some days I feel like he is in time out three times more than the other children, but we have decided to be consistent as possible and require him to follow the same rules as the other children. Although he is allowed an additional warning or redirection of behavior. Nonetheless, he requires and demands a lot of attention, sometimes using the sweet and cuddly side or the sour side. I prefer the cuddly side and no matter his mood, I try to sneak a hug and kiss in, even if he doesn’t like it.

He recently started objecting to everything that happens around him. The staff at school have been trying to teach him how to use his voice to ask someone to stop bothering him (an issue because he is in a specialized classroom with other special needs children and he does get hit). That is all he does at home now. He understands the words, just not when he should use them.

I hug him. “Stop!”

I tell him, “I love you.”

“Quit it!”

One of the other kids sit next to him. “Knock it off, okay?!”

The baby cries. “Stop it, baby!”

He is learning what they are teaching very well. I just wish I could interact with him with less yelling.

My theory – he knows home as his soft place to fall. He is comfortable here and he knows he can take his frustrations to me, or slap them on me, whatever works. He has a gap of cognitive development that has slowed his language and prevents him from being able to communicate how he feels or what he wants. If I tell him that he can’t throw a ball in the house, I could explain why but he doesn’t understand. He has bad days where he is more tired or weak than usual and he is unable to convey that to me. He has no way of understanding why he feels that way. He has to be frustrated so he takes it out on the one person with whom he feels the most comfortable, me (or his dad when he’s home). I am stern with him and I have yelled. Every scream, hit, head-butt, and slap I take chips away at me. It is a crash course in patience every day.

Today when he came home, he crawled in his beanbag chair, covered up and fell asleep before I had time to ask about his day. It happens a lot. He comes home from school and crashes. Today he had a seizure at school so when he got here, maybe that smack was his way of telling me about that unpleasant event and how it bothered him or made him tired. He comes home and he feels like he can be himself and isn’t that what we all want? I don’t like his ill  behavior and we will continue to work on it but I know it’s something we just have to deal with. Maybe I will get lucky and he will let me off with just a “You be nice, Mom,”  as he pulls away from another one of my attempts to hug him. I will take what I can get and readily volunteer to be his safety net. Tonight he slept through the noise, dinner, baths and craziness of our evenings. It breaks my heart. His disease steals so much from him. It steals time with him away from me. My time with my little buddy is precious. People close to our family forget how sick he is. If he seems or looks okay than they think he is okay. The truth is, he has more going on than most people have to encounter in a lifetime and does pretty awesome. I wish more people would look past the sour patch and remember there is a little boy inside missing out on so much at the hands of his disease. I know I’d take any additional time with him I could get, sour patch and all.

*d*

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