I’ve got a head full of thoughts to share —many about communication, the challenges and intricacies of using AAC devices, and some thoughts and questions about the interplay of vision and attention span. They’ll have to stay there a while longer, I’m afraid.
My days have been filled with playing “guard the (feeding) tube” and “mop up after me!” Seriously. Nik has taken to pulling his tube out more than half a dozen times in any given day (today is a new high, I think) and is making his distaste for pull-ups —even when dry— inordinately clear.
It has gone from startling to amusing to downright annoying as hell. Where once Nik would either pull his tube or strip and go to the bathroom on the floor, now we are hit with a constant double-whammy. It has become a game to Nik. He cannot be left unattended right now.
Niksdad and I have decided to take it in stride and not make a big to-do over the behavior. We know Nik is trying to communicate that he wishes to be rid of both the pull-ups and the tube. We also know that several things have to happen in order for that to come to pass sooner rather than later. We’re working on those things daily. However, Nik, in his infinite smarty-pantsness, has decided we’re not taking him seriously enough and has escalated his campaign.
Yesterday, as I stood in the kitchen preparing dinner for my perpetually hungry son, I heard a distinct thwackof snapping elastic. Concerned, as there should be no items in his play area which make such a sound, I looked over the gate to make sure Nik was okay. There stood my indignant child, in all his au naturel glory, very deliberately ripping the elastic tabs on the dry pull-up he had just removed. I had to chuckle at his determination; he’s figured out that we cannot reuse the pull-up if it won’t stay on his bottom. As I looked, I could also see that Nik had removed his feeding tube —yet again.
I sighed and turned to get the necessary supplies to restore order to his clothing and his tummy. As I returned to the family room, I found this tableau. There was no hint of randomness to it in the least.
Your message has been received loud and clear. Believe me, we want to be done with this nonsense of the feeding tube and the pull-ups once and for all as well. Alas, it is not yet time and we must continue to dress you and re-insert the dreaded tube for a while longer.
Meanwhile, please give us a break? ‘K, thanks.
Mama and Papa
ETA: Nik decided we really hadn’t gotten the message clearly; today he pulled the tube and hid it under the sofa.
Pray for us.