Thankfully, I no longer feel like WS is a wall that separates me from Erik. The distinct, autism-like traits he had have gradually fallen away, although some still remain, subtle and strange. He seems to really hear
me now, at least most of the time, and seems to understand most of what I say. He even thinks I am somewhat funny at times. Instead of mostly parroting back my words, he responds appropriately, and we are beginning to have real conversations, which I enjoy immensely. He loves new words and phrases, and he tries them out before committing them to memory for future use. His language is organized and meaningful.
Having said that, though, simple tasks continue to be incredibly difficult. Erik was a completely passive boy when he entered early intervention. Not long ago, he would stand there, drool stringing off his chin, and patiently allow us all to care for him and gently guide his body through the motions of daily life. When things got to be overwhelming for him, he would just slump over and tune out.
Things have improved a lot. However, I am now encountering a frustrating mixture of extremely poor motor skills, some remaining lack of understanding, and the normal pediatric rebellion that comes with being almost 4 years old. While I still get a lot of reassurance from the people around me gently indicating Erik's behavior is perfectly normal for a 4-year-old, I wonder if they truly understand that it is still necessary to hover over Erik to get him to perform even simple tasks. I am beginning to notice that they don't seem to have to with their children. At this time, Erik cannot even consistently complete two-step instructions. He will sporadically do one-step instructions when asked now. I can physically steer him where I want him to go to accomplish something that needs to be done, like brushing his teeth or taking a bath, but he rarely will volunteer to follow instructions to accomplish daily tasks without becoming furious at me and throwing a sometimes violent fit. I am kicked and slapped many times a day. He is too heavy to carry like I used to, although I now find myself doing it anyway when we are short on time and he is raging or just sitting on the floor being happily defiant. Most of the time it does me no good to repeat myself over and over. Consequences for behavior seem to only make things worse and are now sparking some obsessive rumination, and I have resorted to simply shutting him in his room when he tries to destroy things until he is able to calm himself down. This usually doesn't take terribly long. I just don't have the time or the energy to beat a dead horse.
Do they understand that Erik doesn't understand the simple concept of rubbing his hands together to wash them, no matter how hard I try to explain how or demonstrate it for him? Do they understand what it's like to have a child who still doesn't seem to grasp the concept of holding a freaking crayon? Do they understand how tired I am after changing nearly four years of diapers? Do they see the pain in my eyes when I see tiny children moving so easily without falling and performing tasks that I am still waiting for Erik to do someday? Do they know how ridiculously simple my dreams for the future are? Do they understand that some days feel as if I am trying to run uphill? Do they know how exhausting this is?
I don't think they do.
Maybe because it's because I normally try not to sound like I am complaining and just smile and nod back. Honestly, though, I just need to talk about how tired I am sometimes. I didn't realize there were nerves in a person's soul, but, as it turns out, it is possible to ache there.
The last couple of times I walked Erik to his classroom we have been intercepted by my former parent group moderator in the hall. Despite her having nothing to do with Erik or his program any longer, she seems to have made it her personal mission to accept Erik's hand in hers and walk him to his classroom before giving him instructions to show her his locker and hang his backpack and jacket on the little hooks inside. The trouble is, Erik, of course, wants no part of any of this, and she must force him to do it. This apparently requires talking to him like he doesn't have two brain cells to rub together. Her words almost have a Nurse Ratched
quality to them. Horrified, I wonder if I sound anything like this to outsiders. I'm hoping it's just her. I still have a bad taste in my mouth after the day she labeled him "severe" during parent group. It is quite obvious to me that she still believes that is true. I know things are difficult, but I never believed Erik was actually severe
. Maybe he is. Maybe I just can't see it. I don't know what's worse. People calling my kid a "retard" or treating him like the word sounds.
This whole procedure really rubs me the wrong way, but I am unable to find a socially acceptable, kind way to tell her to get the hell away from my child. Instead, I humor her, as Erik does not notice her tone and she seems to be trying to help, and I let her go through the maddening motions I would be required to in order to get him to perform these tasks. Erik inevitably can't seem to see the connection between the metal hook and the loop on the top of his backpack, drops his things, and walks away, distracted by the noise and the plastic bins full of toy cars and trucks. Unable to take his coat off by himself, she helps him off with it, and he drops it on the floor. Sometimes he still drools, indicating to my experienced eye that this whole production has now crossed the border into not-a-chance-in-hellsville. I stifle the giant scream that is assembling itself in my lungs and smile sweetly. She then instructs the adults around us that Erik is to do these things by himself, and we are to not distract him.
Today I was being kicked in the chest once again by my furious, ever growing boy as I tried to change a ruined diaper packed full of the rotten products from the combination of last night's first attempt at mac and cheese and his sensitive stomach, and I almost lost it. Everything began crashing down on me inside, and I had to finish quickly and walk away.
I guess I'm just tired of running uphill each and every day.
Labels: coping, progress, Williams syndrome