is killing us!!!:hairpull:

"Sensory Sue" has totally been giving us a run for our money lately. Doesn't want to be touched, flat out refuses to wear a shirt, won't eat anything but yogurt in a tube, chewing and spitting like a madwoman. I'm having a really hard time trying to figure out if this is all sensory, or if she's in pain. I've even been having to tube her Prevacid, which she usually asks for. :angry7: She's killing me!!!

Now, granted, it's not FREEZING here, but it is to me. She cannot sleep without a shirt on, plain and simple. We literally have to WRESTLE to get a shirt on her, only for her to rip it off and scream for 20 minutes. I just gave up last night, I was that tired.

There's so much more, but I am sooooo tired. She's just been so ODD and "off" lately that I don't know what to make of it.

Oh Lindsey - I wish you could catch a break.

You so should have named her "Sue"!

Henry does the Hulk move sometimes when we put a shirt on. Running around screaming and trying to rip it off - we call it Hulkamania here.

LOL about Hulkamania! :rolling:

She is literally KILLING me. TG she's going to see the ILs for awhile today...Mama needs a break.

The sensory kids sure can be a handful. :hairpull:

We have always had issues with clothing for Iain and clued in long ago that he was much better off without a sheet covering his mattress. With the weather change right now it has been downright impossible in my house to get and keep this critter dressed. The only thing he will wear is his croc shoes. Quite a sight to come home, have him disappear and show up again wearing nothing but his crocs and a smile. Diapers are a no go these days. He is ready for pottying and yet not ready for pottying. He just knows he can not stand being wet/dirty, but we are not at the point where he will sit and produce. ARG!:banghead: I have moved him to 'big boy' pants (pull ups with Cars on them) but now he seems to love them so much he pulls them off and um, has done his business seemingly to keep the pull ups dry. :oops: Simply put, his room is often pristine and smelling like cleaners. Anyone know of a giant kid litterbox?!

Clothing issues seem to get better and then worse. Have you had a change at all in terms of what clothing you are putting on her, Linds? I know you are sunshine 24/7 there (and I am insanely jealous of that!) but have you brought out some new clothing? Iain will spark off if we put anything which has a collar on him. We just clued into that about a month ago. It just drives him absolutely NUTS and it carries over for the day, especially if we do not get the offending clothing off of him and fast. Even if we do get it off, it seems like we have wrecked his system or something for sometimes hours afterwards. Wilbarger can often help us ride through, but even then sometimes it does not.

My advice to you is to check her clothing out and see what has changed, if anything.

Back in a bit, we are about to have our moment of silence for Remembrance Day here.

Linds ... are you trying to put pajama tops on her. PJ's are supposed to be snug -fitting to be flame-retardant, but I've found they're "too tight" for Catherine to tolerate (even though they fit just fine). I usually put her in a large t-shirt (3T) and the long PJ pants as it's not really cold here either. She'll leave the shirt on but always takes off the pants and stuffs them between the side of her crib and the bumper. Always. I tried to put her in a blanket sleeper a last week when it was a little chillier, and she screamed and screamed, saying it hurt her. I'm not sure what we're going to do when it actually does get cold.

Great idea about the t-shirt, Lesley. Maybe it will work for Ava and Lindsay.

Lindsay, take full advantage of that break you're getting today. Do some Lindsay stuff. Take a bubble bath, do your nails, whatever. I am so sorry you're having such a hard time with Ava lately. I wish I could fly down and help you out.:hug:

lol...Carson and her need to trade clothing issues! carson has sensory issues w/ pants he screams for 30 min over pants.. shirts no problem he'll wear'em but you put a pair of pants on him and you have a break down!
Then jackets.... omg lets not go there...
I feel the pain!
maybe they could meet in the middle on the clothes....
actually I didn't realize that was a sensory issue.. I thought he was just spoiled... this has been an issue for months now

I'm sorry lindsey.. maybe just let her sleep in the same shirt she wears during the day? lol i'm no help... hannah is a little s**(* about putting her coat on,, you would think i'm pulling her hair out piece by piece .. some of these behaviors i swear they are just behavioral.. also with changing her diaper she' s started throwing a little fit and kicking me.. i just wanna beat her LOL:box2: i have no advice on how to deal with what avas doing.. cuz i know how hard it is to like make them do something when they are freaking out..

We often keep Iain in his shirt of the day and change him into pj bottoms for the night. It saves a giant hissy fit when we find it has been a hard day and he is not in the mood to change. I have enough battles in the day without worrying if my kid is a fashion plate at night. All day so far, Iain has been roaming about in his pull ups and nothing else and he is happy. Yesterday, he spewed all over my kitchen and we spent the night changing bedshirts dripping in acid puke. I figured he had the stomach flu, but he is right as rain now (just acting like a barnacle and is firmly affixed to me wherever I go). Suffice to say, when he is not doing well, the sensory issues come front and centre.

There is a reason why Iain does not get dressed up and go trick or treating. Somewhere, I have a short video of last year when we tried to get him dressed for it. We just put a pirate outfit (lightweight) over the clothes he had on and he freaked beyond belief. The video is nerve wracking and if you hear the sound only, you would think we were ripping off his limbs one by one. :hairpull: Pretty much the same sound I get when I attempt to put him into rain boots (don't even bother anymore), boots (HAVE to bother with those), or his snowsuit (which has seen use already this year).

Iain does not do well with flowing materials. We do better with pjs that fit a bit more snug on him, but heaven help us if there is a pilling inside. :hairpull:

Can she help you chose clothes? Iain can not help us chose at all yet. One therapist we saw said that attempting to give him the choice when he is older would help. Methinks we are a long way from that, but I sure look forward to that day. Maybe you can see what clothes she favours and figure out why that is and keep to similar items like we have.


:hug:

We often keep Iain in his shirt of the day and change him into pj bottoms for the night. It saves a giant hissy fit when we find it has been a hard day and he is not in the mood to change. I have enough battles in the day without worrying if my kid is a fashion plate at night.

We often do the opposite. It's many a day that Catherine goes to her babysitter in what she slept in! I pack a change of clothes and sometimes she gets dressed ... and sometimes she doesn't! There have been occasions when she's worn the same thing for 2-3 days straight. :oops:

Hi

I don't know if Ava has sensory issues causing her dress problems
BUT she loves to be naked...she thinks it's hysertical and runs around singing...BOOTY BOOTY BOOTY
The only thing that saves me at times, since she is very girlie...is getting new pj's and buying disney pretty colored princess pj's...she won't wear anything else

Good luck...you must be exhausted!!

What a total pain. You must be going crazy! Does the OT have any tips for you?

LOL, Lesley...we only get Ava "dressed" when we absolutely have to. If it were up to me, she'd never leave the PJs. Ditto what you said about the shirts being too tight...I often use old soft Tshirts that have gotten stained/etc...the Old Navy soft ones don't seem to bother her as much and she loves the wide leg PJ pants. FORGET about the tight ones...those are majorly meltdown inducing!

Leigh, I was hoping to hear from you on this one...thank you!!! :heart: I wish Ava could verbalize what she wants to wear, but we're nowhere near that point. LOL, the kid can tell you the ingredients in a Krabby Patty, yet can't say "I love you" or tell me what hurts...I'm pretty frustrated.

I really don't think she's feeling well, which is exacerbating the whole problem, and I think it may be her tube site. It's been leaking more and more, and I can't figure out if it's coming from the valves in the button or from the stoma itself. She freaked on me again earlier and I had to tube her Prevacid. She was yelling, "I tube, I shirt...a water!", and I looked down, and it was pouring out. BUT, I couldn't tell exactly where it was coming from, kwim? I think the "no shirt" policy may be because it's touching her tube...the tube is leaking an extremely FOUL smelling liquid (think poop, puke, and wet cat food, mixed :sign11: ). Her stoma looks ok, maybe slightly pink, but not bad at all. It's obviously hurting her though, b/c she's VERY hesitant to let me touch it.

The sensory stuff is killing...I really WISH OT had some answers for me. :hairpull:

Have you thought about going to a second hand store to get some back ups of old soft tee shirts? I would buy up a bunch if thats what she liked to wear...
carson at least will wear shirts.. diapers only