Sunday, April 22, 2012

When he was good he was very very good, but....

There was a little girl
Who had a little curl
Right in the middle of her for'ed.
When she was good
She was very very good
But when she was bad she was horrid!

My Grams used to tell me this nursery rhyme when I was little. She told it to me a lot. In fact, now that I think about it, I wonder if it was some sort of commentary?...But I digress. ;) It reminds me of Boo. For the most part, he is a great kid. He is sweet, gentle, well behaved, and about as compliant as any four year old on the market. But when things are off kilter, when his coping skills are used up, it gets super ugly.

I love this post about the concept of triggers from A Resident Alien. My favorite quote from the post says "But we forget that triggers aren't the cause of meltdowns, any more than that one rainstorm caused the road to collapse. Just like the road had weaknesses to begin with, autistics don't have the sensory and cognitive equipment to deal with a lot of stuff that's trivial to deal with if you're NT." (NT stands for "neurotypical" meaning someone who does not have a form of autism or other disorder. I, like others in the community, prefer this word over the word "normal" because our kids are not abnormal. But I digress....again.)

I frequently find myself trying to explain the fact that whatever Boo is screaming about isn't actually what's bothering him. The trigger isn't actually the cause. I also find myself in a constant state of heightened awareness. Always on the lookout for signs that things are bubbling under the surface for my Boo, or for things which could tax his coping ability. But sometimes, even with my extreme caution and constant vigilance, I just don't see it coming.

Tuesday the 17th was a difficult one for Boo. I wrote about it <here> But we got through it. I let it go. I don't think he did. Wednesday was different too. It was supposed to be a school day, but I was apparently the only parent who didn't know that there was no school that day. So I got him up and took him to school, only to find the door locked. He was super upset. But we got through it. I let it go. I don't think he did. Tuesday having been my last day of work, Boo and I were able to spend the entire day together Wednesday and Thursday. I had looked forward to it for a long time. Boo was upset because he missed going to Mammo's house. But we got through it. I let it go. I don't think he did. Friday he was chipper and happy going to school. I had made arrangements to take a friend to town after Boo got out of school. This friend attends our church and she is unable to drive, so I had offered to take her with me when I go to Walmart. I picked her up and then went to the school to pick up Boo. But where I failed miserably was I forgot to tell him ahead of time that she would be with me. All that change to his routine, all that upheaval. I should have seen what was bubbling under the surface. I should have known that one more unexpected change to the normal way of things could send him over the edge.

I got out of the car and his teacher released him. He took a few steps toward me with his usual big smile. Then his face twisted up and he started to cry. I asked what was wrong and he said that he didn't want me to come yet. He wanted to wait till Little Britches's mom (the Boo Whisperer) came because he wanted to talk to her. (He pesters her every time he sees her, begging for a playdate) I was working him toward the car but when he saw my friend in the front seat he froze. Then he ran away from the car. In a flash, it was a meltdown. He flatly refused to get into the car. He was wailing, rolling on the ground, screaming, tears running down his cheeks. I was at a loss. I felt torn. Wanting to comfort my boy, who refused to allow me to touch him or to speak to him. Wanting to reassure my friend that this wasn't her fault, regardless of the fact that Boo kept screaming that he did not want her in the car and that he could not get in with her in there. She kept saying we should just cancel, she didn't want him upset, I was trying in vain to settle him and respond to her. Before I knew it, I was in the midst of a minor meltdown myself. (Mommies are not immune!) I was crying uncontrollably, watching my son so hurt and unable to control himself, to stop the fit. I was broken hearted. I was scared. I didn't know what the heck I was going to do. I couldn't leave Boo at school alone. I couldn't leave my friend there stranded. But it was clear that he was NOT going to get in that car with her today. It just was not going to happen. As I stood there having the ugly cry right there in public, (you know, cheeks red, tears streaming, nose running...the ugly cry) my brain froze. I could not think of a solution. My friend kept asking me what she should do, what I wanted her to do. All that my brain would scream (and I do mean scream) was "make my son not Autistic!" Finally, my friend graciously suggested that she go across the parking lot to Pastor's house (Boo's preschool is in our church) and ask his wife for a ride back home. I apologized profusely for the inconvenience and she assured me it was fine, but I felt lower than dirt. I packed Boo into the car and we left.

I made the further mistake of continuing on to Walmart. I felt like I was backed into a corner. I had been putting off the shopping till payday and there were many things we needed. One of them was a present for Boo's friend's birthday party the next day. I hoped he would be fine in the store. And for the most part he was. He never had any total screaming fits or anything. But he was spent, emotionally and physically. I could tell he was very tired. It was all I could do to get him from one part of the store to the next. He was agitated, easily upset. He picked out a gift for his friend within minutes of walking in the front door. But he spent forever in the toy section just looking and playing. I let him take almost all the time he wanted because I knew the day had already been hard on him. But by the time we got to the food section of the store, where I really needed to spend some time, he had used up all his reserves. His nerves were right at the surface. He kept saying that he needed to stop and rest. But he refused to sit in the cart because it hurts his legs. He was alternating between running around like a maniac and refusing to move because he was so tired. I was getting the stare from other shoppers. About a third of me could care less. Another third of me wanted to explain away his behavior by explaining all about autism and what a difficult week he was having. The remaining portion of me? Well, it just wanted to punch them in the face. At one point he found a likely looking spot in the shelving where they were running low on toilet paper and he crawled right in. It was like a quiet little haven in there. I didn't think I would ever get him out!

By the time we were done, I had been yelled at, screamed at, hit, head-butted, pushed and pulled all over the store. I had carried Mr. Fifty-Pounds-of-dead-weight-won't-wrap-his-legs-around-me much more then my back was happy with. I was aching from head to toe, emotionally and mentally and physically drained! I couldn't believe it when we got everything loaded into the car and we were ready to leave and I looked at the clock...we had been in that evil store for FOUR HOURS! I figured he had every right to hate me for that bit of torture.

When we arrived back home, I was trying to get the groceries into the house and put away, and he quickly went into another meltdown. This time was triggered when the neighbors were outside and I told him that he could invite them to our house, but he could not invite himself to theirs. (a very difficult concept for Boo that we have been working on recently) My husband ended up putting away all the perishables for me while I attempted to mitigate the situation. This one was worse than the first, if you can imagine. Piercing shrill screams and all. Eventually he got calmed down and he did end up playing with his friends for a while, and they did end up inviting him to their house. He was next door and I was trying to recover myself from the day's events but I just couldn't shake it. I went out in the back yard to sit and relax. I noticed at the neighbor's house I saw Boo in the backyard playing, but no other kids. I asked him where his friends were. He said they were inside. I asked why he wasn't playing with them. He said he didn't want to be inside. In the emotionally fragile state I was in at the time, I took this as some sort of terrible omen. It worried me that he was so content to be all alone, outside the group, not included. I was seeing a future of loneliness and solitude for my precious boy and it rocked me to my core. I sat on my patio and bawled.

Not being able to shake my feelings, I decided that some physical work was just what I needed. I wanted to mow the yard. My husband had to work pretty hard to get the mower running, and by the time I got going Boo had to come home from the neighbors' house. I assumed he was in the house happy with Daddy. Which he was. But what I did not know was that he had decided that he wanted to come outside and play in the yard WHILE I was mowing. When I came in the house he asked me if I was finished and I said yes. He. Went. Nuclear. It was one of the worst meltdowns I have seen to date. He was wild. Violent. Throwing his body around, slapping me, screaming like a girl in a horror movie. There was nothing I could do to help or to soothe. If I tried to speak it ticked him off. If I tried to touch him, same thing. And heaven forbid I remove myself from him when he was beating me up. It just kept coming wave after wave. And I kept thinking my God, he is four years old. What is this going to look like when he is 12? He is already ridiculously strong and able to really hurt himself or someone else. I have got to get a handle on this! I have got to do a better job with him. I have to learn to see this coming! Eventually it just wound itself down. The rest of the night remained tensely calm.

I told my husband later that it seemed like the entire day he was like a guitar string wound too tightly, looking perfectly fine till the moment someone strummed, just like they had a hundred times before without incident and suddenly, SNAP! He replied, "Yep. Contents under pressure." After he went to sleep, I took a long hot bath and cried. I felt so depressed. I felt like his future was grim. Like I had failed him. I climbed into bed that night almost wishing that I didn't have to wake up in the morning. But the night's rest was restorative for us all, and we woke up chipper and upright again.

The coming week on our calendar is ominous. Today we had his friend's birthday party. Monday a school field trip. Thursday the school spring program. (songs and recitations in front of an audience with a microphone!) And next Saturday is Boo's birthday party. Followed by no school the next Monday. So I'm sure that God will forgive me, but if Boo sleeps in or if he just doesn't want to go to Sunday School and church in the morning, we simply won't go. I have no fight left in me. And I don't want my baby feeling like he has to fight the world just to exist in it.


  1. I would appreciate it if you could further explain your comment. Nothing can be learned from being called a bad mother. But if you tell me why you feel that way or what you feel I should change, I can learn from you. Otherwise, you're just being hurtful and that serves no one.

  2. I know someone who has a little girl just like your son. They have her on Prozac and sleep med. She actually seems like a much happier person. Before, she wouldn't go to sleep, and cried at the drop of a hat. She was 3 when it started, and it creates so much drama for the entire family that there were often weeks of despair for all concerned. Since living with them for a few months, I found that her main thing was not so much to be coddled, but to have loving attention. She's very smart, and for a long time the family would fly to fulfill her every wish and whim. I would just say, " you've got to be kidding me". I'm not saying that she is totally playing them, but I think is a manic depressive, and desperate for affection, and to be heard. She's kind of like an adolescent, a hormonal teenager. So, good luck. Just don't work so hard to please him, that your entire life, and everyone around him is miserable every waking minute, anticipating his next tantrum.