OT says it's behavioral--and my update

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Registered: 04-01-2003
OT says it's behavioral--and my update
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Fri, 12-03-2004 - 5:06am

The OT got to witness Makenna's whining session in action Tuesday and insits it's behavioral and that Makenna is manipulating me. BUT at the same time she says that Makenna is not like any other child she has seen and she "stumps" her (I've gotten this from a couple of other people who see her also).

I just don't agree that Makenna is manipulating me. I don't know how to explain it, I just know in my gut (just like I knew something was wrong with her shortly after birth way before the diagnosis of SID) that she's not doing this to be manipulative and doesn't need harsh discipline.

Here's the background. I mentioned before that she's taken to freaking out if she sees a dust ball, hair, string or anything on the ground, her shirt, the chair, etc even if it's not touching her. She seems to get "stuck" and cannot just leave the situation to get away from it. She has to see me pick it up and get rid of it and then she immediately calms down and is fine. Well, the problem comes in that once she's gotten upset by seeing something like this, she typically can begin a whining session in which she whines on and off (mostly on) for hours but nothing soothes her. She will want up in the chair and then immediately want back down, want in my arms, then back down, want a drink but then won't take the cup from me, etc. And she will often also hug on my neck for 20 to 30 minutes straight and lay her head on my shoulder like she really needs comfort. It really seems as if she's needing or wanting something but she either doesn't know how to say it or honestly does not know just exactly what it is that she wants. So, it's my task to offer her a million things until I find the thing that she seems to want at the time.

The reason I don't think this is behavioral manipulation (OT says Makenna is very bright and "knows" she can just whine and have me get her what she wants) is because she does not do this at any other time. It's like the sensory issue (seeing the dust ball) sets her off and that's when this occurs. And it's not a fit. Not my idea of a fit anyway (throwing herself down and screaming and crying). She has had fits before when I knew it was strictly terrible two behavior and we don't respond to them and she gets over them pretty quickly plus she can be redirected pretty easily during these. But, this whining escalates into a major crying and upset situation that will go on for hours and hours if I don't try to comfort her.

The OT is a little confusing because she saw Makenna get upset looking at a dust ball and agrees that is sensory related and that she's visibly upset (not just manipulating) but then the whining afterward she says is strictly behavioral. I know technically it's a "behavior" but if it's a direct result from a sensory issue, I don't see how "punishment" would be effective. The OT says that if I punish the whining, it won't affect any sensory issues but if she is whining because she is having lasting effects from the dust ball (upset from the incorrect sensory processing) isn't that a little like punishing her for having sensory issues? That's my thinking on it. I mean, I can understand punishment if she throws a fit because she can't have a certain toy at the right moment or something but I really think this behavior is steming from some wrong processing going on in her head. I don't know, maybe my thinking is skewed.

She's generally not a child who gets in trouble even at this age (she's EXTREMELY timid and reserved) and if she goes for something I don't want her to have all I have to do is look at her and say very calmly and softly "No" and she stops and walks away with no protests and doesn't approach it again (I know it sounds too good to be true but believe me this is how she reacts...unless I YELL no at her and then she starts crying really hard and hides somewhere). Knowing this and that this is typically how she behaves, I don't see her whining as manipulative because I can say "no" all day and she still whines. Besides, if it was manipulative, shouldn't she be trying to manipulating me to do or get her something SPECIFIC? She never seems to be content with anything I offer her. And other times (when she is whining WITHOUT seeing a dust ball) I can say, "Go show me what you want." and she will quickly walk directly over to what it is and point or try to get it herself while smiling. So she can obviously do this (and she does it every time when it's not related to a sensory situation) but when she is in a whining fit after seeing a dust ball I can ask her all day long "Go show me what you want" yet she continues to whine and hug on my neck. This is what makes me think that she really just doesn't know what she wants.

Anybody else experience this? Do you think that because it's a behavior that stems from a sensory issue it should still be handled the same as if it were strictly behavior? And do you think it's manipulative? The OT says I should limit the whining and hugging on my neck to 10 minutes and then put her in her crib and leave her to cry. She said let her go as long as it takes for her to calm down even if it's hours and hours. I'm just not comfortable with that because I think she is upset over a very ligitamate issue (to her...her brain is telling her that dust ball is a major threat because it might touch her, even the OT agrees with that). I have let her cry a little while in her crib at nap time if she has that tired whine (where she went too long before napping) and I know she will be out anyway but just to let her scream for hours and hours? I'm just not comfortable with that. The OT EVEN said that if she cries so hard she throws up to go clean it up but STILL do not pick her up! WTH? Sorry, that to me just sounds horrible and I won't do it!

I'm headed to the doctor tomorrow who might refer me on to a therapist to have someone to talk to and I've made changes already. My dh will be watching Makenna at least one weekend a month while I go out of town (1.5 hours away) to spend the whole weekend with my best friend and just do girl stuff (she's single with no children). I'm leaving tomorrow to go see her. So, this will be a major change from living in the house daily and never being without Makenna for 20 months. It will be the first time I've been out of the house in nearly two weeks. Plus, I made it a point to open up every single blind in the house today and let a bunch of light in and dragged myself to the shower and I have felt better today than I have in a long time. Oh, and I only have one more final in school but the other classes are done and a HUGE weight has been lifted due to that. I take more time to chill on the computer or do housework without feeling guilt. I know housework doesn't sound like fun...lol...but I stress over clutter and a dirty house so having the ability to clean it and feel good in the house (without stressing over needing to be spending that time doing course work) is a good time to me! lol! Anyway, sorry this got so long. I look forward to any input from you guys! Thanks!

Shanna & Makenna (20 months)
www.littlemakenna.com

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Registered: 09-30-2004
Fri, 12-03-2004 - 6:57am

Nothing like having an outside professional undermine what you *know* in your gut to be true!..... Shanna, you know best, you're Mom,

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Registered: 11-16-2004
Fri, 12-03-2004 - 7:53am
Shanna, I don't have time to post you everything I want to right now. So I will so that this afternoon. I've dealt with this sensory verusu behavior issue professionally and with Marissa. It is so hard! I wasn't happy with the therapist I tried because she didn't understand sensory but it did help me with some seeing which was behavior. Ok, just wanted to tell you I understand and I'll be back for more specifics.
Michele
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Registered: 02-19-2004
Fri, 12-03-2004 - 10:19am
Hi Shanna.
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Registered: 04-01-2003
Fri, 12-03-2004 - 12:24pm

Thanks so much for your reply. I think you've hit it exactly. Her expressive language is definitely delayed. Her receptive is fine and that's why I always ask her to go show me what she wants. Once she points the item out, I use its name several times to try and help her language. I know she has no words in her vocabulary to express her feelings so I think you're exactly right that it comes out as whining and hugging. Thanks so much for the reassurance!

Shanna & Makenna (20 months)
www.littlemakenna.com

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Registered: 04-01-2003
Fri, 12-03-2004 - 12:26pm

Oh thanks so much Michele! I'm glad you've dealt with this and can give me some more insight both personally and professionally! I look forward to your post!

Shanna & Makenna (20 months)
www.littlemakenna.com

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Registered: 04-01-2003
Fri, 12-03-2004 - 12:35pm

Thanks so much Colleen! There will most definitely be retail therapy involved this weekend! lol! And I'm even looking forward to the 1.5 hour road trip to ride alone in my Mustang, turn up the radio loud, and listen to MY music and not some children's CD over and over and over. LOL!

That was my feeling about it also. She has claimed on many occassions that Makenna is very difficult to figure out so I wondered how she just *knew* this was manipulative behavior! She never gave a reason why she thinks this other than to say that Makenna is very smart (she tested very high cognitively) and knows what she is doing and has figured out that the whining gets my attention.

And your right that she seems to be anticipating the next item that will scare her. She even looks for it! Once she sees one fuzz ball, she promptly checks out her clothing, scans the floor, etc like she's trying to see if there are more to come. Even the OT saw this and said that's what she seems to be doing.

Thanks for the tips on the arm hugs! That sounds nice and relaxing! It is definitely like she gets "stuck" in that mode so maybe this would help! I'll try anything at this point! lol!

I KNOW! Letting her VOMIT and then cleaning it up and STILL leaving her there to me is a fate so much worse than whining! I can't imagine ever doing that! Thanks for the reply and reassurance! All the support means so much and I have more strength than ever now to stick with my gut. I just know it's not a manipulative behavior!

Shanna & Makenna (20 months)
www.littlemakenna.com

iVillage Member
Registered: 11-16-2004
Fri, 12-03-2004 - 2:38pm

Shanna, Ok I have a little more time now. Unfortunately I haven't had time to read all your responses, but here goes some thoughts I had reading your post.

First of all Makenna is young. My Noah is 26 months and didnt start talking until 21 months. Before that he would have meltdowns because he couldn't express his needs. Marissa's OT saw a few of his meltdowns and assumed he had sensory issues too, but I knew better. The point is, she can very well be having issues over not communicating.

Second of all is the sensory versus behavior issue. The way I explained it to parents is that are very intertwined. Sensory starts it, then the behavior comes for them to control their environment. And so on and so on. Figuring out what is what is very hard. I dealt with this with Marissa over toileting. She continued to wet herself for a very long time. I decided it was behavioral and went to get behavioral advice from a therapist, since she didin't understand sensory at all her behavior plan did nothing. Finally I came up with my own plan which worked. But I did need to take a behavioral approach and blend it with sensory knowledge. Hope that makes sense.

So what I am trying to say is I have been very confused about kids I treated myself. Heck, I had to see a OT for Marissa before I was totally convinced there was a sensory issue. It is not cut and dry. You need to decide what your style is going to be with Makenna, how you are going to handle things, ect. It isn't easy. Noah is testing me lately, so she can be testing you too. I don't think we can take a hard nosed behavioral approach with our kids though.

Do you go to OT through early intervention? If you do I wonder if they have a social worker who can help you? The ones I have worked with have been great because they work in EI and see the whole picture. (versus the bad counselor I had).

I am sure that wasn'tn too helpful reading it back, it sounds more like random thoughts! Our kids are confusing can be so high! You are doing great for Makenna, try and remember that.
Michele

iVillage Member
Registered: 11-01-2004
Sat, 12-04-2004 - 2:02pm

Shanna, have you thought that maybe some of these issues could be a little OCD?

               

 

iVillage Member
Registered: 09-20-2004
Sat, 12-04-2004 - 3:12pm

Shanna,

It is hard to believe that it is behavioral. YOur Mackenna sounds like a little puzzle too. Gabriel always stumps the professionals too! I am so happy you are getting away - finally!!! Can I come along - I could use a little break! LOL. I wish I could type more, but I have to find out where my little guy disappeared to. I'll catch up more with you later.

Kim

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Registered: 10-09-2004
Mon, 12-06-2004 - 12:53pm
I think it is a sensory issue and should not be handled as a "normal" tantrum. My ds is the same way and can whine for hours because one thing went wrong. If I get upset or try to discipline him for it, the situation becomes worse. I have learned to comfort him and it will eventually subside. I dont think they are manipulating in these sitatuions. Like my OT told me the other day with SID their body is discombobulated (sp?) and they feel that, therefore these tantrums and behaviors occur. Therefore I see it as they have very little control over it. Lucky you, sounds like your daughter is well behaved overall! We have the extreme in our household... it is VERY stressful here! Good luck!

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