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Where’s my sign?

There are days, I want a sign that reads, “I’m not a bad parent. He’s on the spectrum. Please excuse and ignore the tantrum.”  Yesterday was one of those days.

We had a pretty good week with E last week. Michael even commented Thursday evening how well he was doing. He was in a decent mood. The tantrums had been minimal, outside of the normal morning battle to get him out the door to school.  He was involved in conversations at home and at school.  He was learning a new game in class with two classmates and not freaking out. He was engaged, conversing, compliant. It is on those days or weeks that I can almost make myself believe we’re not in this world of PDD, that things aren’t so bad. And then we have days like yesterday.

Every time we have to go somewhere he wants nothing to do with, I know it has the potential to go completely sideways. I do everything I can to minimize the damage – let him know what’s coming, take snacks and drinks, bring his DS or whatever to keep him occupied, make sure he’s dressed weather-appropriately – but even managing to remember to do all of that doesn’t mean he won’t throw a complete fit at some point during the day.  Saturday he wasn’t perfect, but he was survivable in spite of the fact we were at the fields from 9:30am til nearly 4pm.  Sunday I took him with me to church and choir rehearsal instead of having Michael take him and Ethan having to get through two long soccer days in a row. Ry’s team made the finals so we went to the fields after choir. I thought we would be good to go. Only one game…he had eaten, he was warm, he had my phone to play with. And then it all went to hell, quickly.   A little girl walked by and wanted to see what he was playing. He refused to let her see. I told him that was rude and inappropriate. The little girl just looked at me and walked away.  It went downhill from there. I don’t even remember what particular thing set him off, but he started yelling and screeching. People from another game completely were turning and looking. I stared straight ahead. I couldn’t give in and take him to the car – that was exactly what he wanted. I did take the phone away, which set him off again.  And he started crying. I started sweating. And I wanted to cry too.  I wanted to explain to all of those people why he was throwing a tantrum. I wanted them to understand it wasn’t my fault, it wasn’t E’s fault. My heart was breaking for all of us.  I wanted a sign right then to hold up in situations like that…..something that would quickly explain why it was happening.  Days like that, I just want to crawl into a hole, bury my head, and bawl my eyes out. Why does it have to be this hard? Why him? Why us? If those staring people could see and understand for one minute how hard it is some days to try to have a “normal” life when I’m waiting every second for just those type of tantrums to occur.

He is doing better, some of the time.  There are days the sunshine is so bright, I want to forget those stupid letters attached to his name. There are sunshine days I can’t seem to let myself enjoy because I know the darkness will be returning.  And when I look into the future on days like yesterday, the view is bleak indeed.  I could quantify this by saying he isn’t that bad in the grand scheme of things. It could be worse. I know what we deal with is minimal compared to so many others. But again, this is *our* journey. Some days I’m grateful it is what it is, and days when it just sucks. I get exhausted thinking about it. Therapy is helping – I see definite implications of that.  But it’s almost like being in the NICU again….two steps forward, five steps back. I want to stay in the sunshine, move only one direction (forward), and not have days like yesterday where I’m sure people are wondering what kind of parent I am for letting my 7-year-old behave like a two-year old.  I don’t want any more days where I have to wonder where’s my sign.

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