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.
"Dear Mama & Papa, I'm D-O-N-E! Got it?"
Dear son,
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.
Love,
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.
i feel absolutely awful, but i can’t help but feel somewhat celebratory about all this.
please, please forgive me – you deserve a much more empathetic friend. you also deserve, more than any other person on earth, a BREAK.
however, i just can’t help it.
i read this and i feel this little ‘yippee!’ build up. i know – it’s wrong. but i can’t help but revel in nik’s delicious determination to get what he wants. no matter how hard i try, i can’t quell this little voice inside my head rooting him on. i want to yell, ‘you go, smarty pants!’
i know his tenacity is making you nuts, but it will ultimately take him to heights we can’t even imagine.
but um, sorry.
He is amazing. Like you.
Yeah, exactly what they both said.
oh my. no stopping that kid when he’s made up his mind.
Let me preface this comment with a very sincere apology, but I was LMAO at the end when Nik hid the tube under the sofa! In typical Nik fashion, he escalates things to greater and greater heights to get his point across. I’d like to ditto the previous posters. With that kind of determination, he going to go farther than anyone can imagine. Hugs to you sister. Hang in there.
Yes … what everyone else said. I confess, I’m sitting here smiling at Nik hiding the tube.
I love, love, love his determination.
But, yes, I do hope that you’re able to get a break (or get rid of) the tube and Pull-Ups sooner rather than later.
What an amazing kid! You have my sympathy, though, for how tough this is on you.
What has to happen before he can lose the tube permanently?
Nik has to be able to drink 40 ounces of fluid per day. He’s currently drinking about 6-10. That’s up from a few days ago, though…was only 3! I just keep telling him that if he wants to get rid of the tube he has to drink everything from a cup/straw. He gets so tired trying to drink all that. We’re working with our SLP on a straw program which should help.
One determined little man who is communicating very loudly!! Hope the drinking continues to improve.
Forty ounces? That seems like so much! I know he can do it, but it sounds like a lot for a little guy.
Don’t you wish you had a magic ball that will let you peek ahead to when these issues would be resolved?
I feel as if I could handle the poop smearing, paper-eating, clothes-removing days much better if I had some definite idea of when it would all end.
Hang in there, and keep the paper towels handy!
Ah, Nik.
We love your tenacity. But – your mama and dad need a little break. Drink the juice. Just drink the juice.
love.
He is getting very creative……..and he knows what’s what. Including how to get your attention (and you to feed him—-I can’t believe how much he is eating, still remember your posts about trying to get him to eat puréed/strained fruit).
oh my god! that nik has always struck me as a master communicator! i know it’s exhausting for you but i have to say, his pluck, determination and push for SELF-determination is awesome!!
Jess summed it up pretty darn good!
Well, if he continues to double or triple what he’s drinking every few days, that means you’re close, right?
Good luck… you’ve got quite the determined lad on your hands there!
his is the amazing spirit – as is yours
love this kid
i forgot to say how much i love all the pics in the new banner!
Yes he sure knows how to get his point across.
Smiles
That is one incredibly smart and crafty boy. And he will demonstrate his talents in ways that make your life less contant-rinse-cycle, though for your own bandwidth’s sake I hope this happens soon.
He is so freaking smart.
I’ve said it before .
You are in for it.
Praying.
OH. Sweet boy. I’m sorry he hates his tube and his pull-up and I am rooting for the day he will need neither.
Self advocacy at its finest! lol.
I looked at that tube and thought “That sure must hurt pulling it out with the balloon inflated like that”, and also thought “She’s sure inflating that balloon for all it’s worth, just trying to get Nik to keep it in.”
Like the others, I’m sorry/glad that this is happening. I know that the glad part is hard to see when your up close and personal, but you will have some great stories to reminisce with someday.
Hang in there. And Nik, drink the juice, man.
Joe