My son started a new neuro program recently that I am very excited about. It has been a long time since I have been open to introducing a new "program" but it's a sign that he is doing so well physically and emotionally that his body is ready to be taught. And it's a sign that I am now ready to handle something more. This weekend I overdid it so I wrote this to process and as a reminder to pace myself.
My son was holding the vibrating massager in his mouth for a while as I was getting ready for church. After I took it out and led him to the car, he started very LOUD vocalizing, not upset, just loud and persistent. This is not a new behavior but it doesn't happen super often any more, and most Sundays my husband is able to sit with him in the chapel while I lead the music. He rarely needs to take him out to the foyer anymore. When my son has gotten into this vocalizing groove before, nothing I've tried has gotten him out of it. When we got to church I took my son directly to the foyer for Sacrament Meeting because he was so loud and couldn't stop. I tried putting the massager near his mouth, or feeding him, and he was just as loud even as he was chewing his food. I had already been alone with him for the entire previous day since my husband had left early in the morning to fly to Asia (usually he takes my son out for several hours on Saturday afternoons, and takes care of him during Sacrament Meeting), and I really wanted to hear the meeting. He was so loud that I knew he could be heard in the chapel and I could barely hear the audio that was piped into the foyer. Two of my friends took pity on me and insisted on sitting with my son while I sat in the chapel and enjoyed the meeting. Then one of them took him for the second hour and her husband took him for the third hour, spending part of it driving him around in their car. Angels.
(Developmental Note: The sounds that he was making were varied and one friend says she heard a phrase (I can't remember what) and the other says she heard him say, "Banana.")
The weather has been extremely hot and I had to work not to berate myself for only doing one neuro session with my son on Saturday, and for not taking him out for a drive like he usually gets when my husband is home.
Church was awesome and my son's behavior was perfect today, so things could have been worse, and they have been MUCH worse. I have experienced many, many very difficult Sundays over the past 4-5 years dealing with his extreme tantrums and self-injury. Today he was just being happy and expressive, but my tears flowed easily and often just from the sheer burden of feeling that this was all on my shoulders, then from gratitude for the sacrament passed to me by a smiling twelve-year old, and the help, kindness, and true words that came from my dear friends and teachers.
He was calm and quiet when I got him back after church, and we enjoyed a long drive in the air-conditioned car, and then I got the idea to do one of his neuro eye exercises by driving slow left-turn circles (in the air-conditioned car!) in our cul-de-sac! This worked well and when I glanced back at my son it looked like his eyes were doing the right thing. I wanted to do ten but could only do eight before I became dizzy. Still, it counts!
I realized today that I need to remember that this is a marathon, not a sprint. Whenever I start a new thing with my son, I am very gung-ho and do my best to do everything I'm supposed to do, not to mention the detailed reporting that I like to do. I need to realize that because I'm using my afternoon helpers to help with the program, and I'm personally actively participating, I'm cutting into time that used to be 100% respite for me. Even though his self-injury is almost completely gone, he is BIG, I cook all his food from scratch, and I still have a lot of diapers to change and laundry to wash. I need to pace myself and give myself a break. I really appreciate that the neuro doc I'm working with is not pushing too hard like I was pushed in the last program I did, which was helpful but also traumatic for me. I'm also grateful that this doc does housecalls and direct treatment, and that I have wonderful helpers to do some of the exercises.
I realized today that even though I thought I was handling everything well, that when my friends offered to help today and I burst into tears, I really needed the respite. This allowed me to replenish myself and others to have the blessing of spending time with my son.
No comments:
Post a Comment