Behavior Challenge Thread

[koolaidmoms]

GraceluvsWDW - I do think it is important to teach my son manners and certain "social graces" such as not telling someone he's meeting that their breath stinks or their shirt is ugly. But, he is 6 and he is still going to do inappropriate things because he is 6 but we still work on what is appropriate.

We just went to our first meal out in a restaurant (other than WDW or fast food) in ages. He has never been able to sit for very long in a crowded restaurants or theaters without having to be taken out because he was annoying everyone around us fidgeting, squirming and talking loudly. Last week we were in a restaurant for an hour and a half and he did pretty good.

I think part of it is maturity. He will turn 7 in April and is just starting to understand cause and effect in relation to actions and people. We talk about this a great deal and roll play how to act with other kids (and he does this in his social skills class too).

I think part of it was that we were prepared and in a relaxed mood when we went. We knew to sit in a booth (hard chairs bother his legs and make him not be able to sit still). When the food took a long time coming to the table we asked for crackers for him. We were able to draw on the back of his place mat and play games with him and talk about WDW and our favorite things there.

I have a friend who helped her daughter morph her stimming into more appropriate actions. Like for awhile she would raise her hands and wave her fingers. Eventually they were able to work with her into changing it to when she was in public she may twirl her hair if she needs. to. Not as noticeable for others to see as stimming. They also had a secret signal that if the daughter felt anxiety coming on she could pull on her ear and that meant they needed to leave as quickly as possible so she could start her calming process when they were out. Granted by then she was 8-9 years old and could better understand the feelings in her body.

I don't want my DS to use his disability as a crutch and believe me he tries especially at school. We finally had to tell them he is playing you. He is a little bee charmer and you are falling for it. This just happened the other day at a meeting with his teacher and we told her that she has to be tough and hold him to the standard that is expected because every time he is able to move the line of what is acceptable he will keep testing to see if he can move it farther.

I hope this rambling made sense in someway. I am very much NT and try very, very, hard to understand these things but it is still difficult for me.

 

[Kat77]

Truthfully, I think the only way I could eliminate the triggers would be to home school. If I could figure out how to do that, along with quitting the groups we are in like Girl scouts (which we are quitting after our commitment this year) my dd would be much less anxious. Unfortuantely, that's just not possible. I have started looking for a high school girl to watch dd during the summer (one on one). I just think that is my best option.

We are actually trying this right now. Pulled DS out of school and we are in the process of setting up homeschool through the district under his Dr.'s reccommendation. He seems less withdrawn towards us these past couple days but is still not wanting to interact socially with other kids. Scouts is definitely a no go. He willingly attended a fundraiser with DH on Saturday night (ds12 was playing jazz at event) which suprised me. I did not think we would get him out the door so I did not get ready. DH ran home to get DS12's sheet music, told DS9 how fancy the set up was and the kid lit up. He was ready to go in record time! The kid loves to wear a suit despite the fact he walks around in his jammies all day. In fact, now I think about it, the only day he ever willingly got dressed for school was the day they had to wear formal attire to attend a ballet.... LOL! I should buy him a leisure suit and smoking jacket.

I know your probably thinking one on one to avoid stressing out DD... but I think the right HS kid sitting could be wonderful benefit for another reason. DS REALLY looks up to his brother and often considers his words golden advice. Socially this could be a great for your DD, she might even try things for a teen "friend" that she would never do for you. I really hope this works out! Ask some local youth directors if they can pass your contact info on to some girls who are volunteer oriented. I know there are some kids at our church who just naturally gravitate towards being helpers, they take sign language, assist with VBS, look forward to mission trips... these teens would be a great place to start looking.
As wacked as it sounds, I was going to suggest having a preteen or teen over to help and see if they could wash your DD's hair by playing beauty shop with her. If I lived closer, DD11 would be thrilled to try. Your DD may still be too young for the makeover tactic but this works for an 8 yr old we know with sensory issues (sorry, not AS, but she makes me think Aspie quite often). She'll do her hair and fingernails with my girls but still meltsdown over washing, brushing and clipping nails at home. I do not know this would have worked on the same little girl a year ago though. One day she asked DD11 if she could have a bottle of nail polish and that was it... (oh, the things we'll learn to tolerate for beauty!).

 

[GraceLuvsWDW]

One other thing I wanted to bring up here.

Last night dd pointedly asked me "Are you the one who gives me money when it's supposed to be the Tooth Fairy?"

Shocked me at first, then some quick thinking, then I simply replied "Yes I am." Now I don't know what the RIGHT thing to do here was but I was afraid of lying to her when she had the "idea" that it wasn't possible. She's very smart and knows when something is not possible so I fessed up.

How do you guys handle these situations?


Kat77, thanks for your post, you have some great ideas! Your DS is lucky to have you!

 

[Kat77]

I haven't tried this. She becomes agitated when I mention the pony pass. This morning, she was complaining about PE, I mentioned the pony pass and she angrily said "NO". This is an ongoing problem for dd. When I broach a difficult topic she becomes angry and shuts down. I'll admit I'm not the best at defusing the anger and persisting, I usually end up dropping it. Her brain works in a very black & white way. If for the past month and a half she was told she CANNOT use the pass, I don't know how to get her to process the change that now she CAN use it. I really need to brainstorm on some social story that explains the change.

Same here. We drop it also. Sometimes there is a point beyond any amount reasoning and DS's psych. also advised us to drop it when he has gotten into this state.
Honestly, I think the pattern is established for her with the pony pass and she is done for good (my son would be).
All I can think of that might work for my own DS, would be to design a NEW pass or choose a large signal item (DS had a huge red die he put on the corner of his desk when he needed to leave the classroom) with the explanation you know the Pony Pass failed so you want to create a new system that teachers will have to acknowledge this time. Obviously, it's just the same thing by another name and she will know this, but she will feel more control over something she's designed herself and understands.

I have tried many things with the hair washing. I tried to "role play" beauty salon (which actually worked-once)

I did not read this until after posting. Too funny!

 

[Kat77]

One other thing I wanted to bring up here.

Last night dd pointedly asked me "Are you the one who gives me money when it's supposed to be the Tooth Fairy?"

Shocked me at first, then some quick thinking, then I simply replied "Yes I am." Now I don't know what the RIGHT thing to do here was but I was afraid of lying to her when she had the "idea" that it wasn't possible. She's very smart and knows when something is not possible so I fessed up.

How do you guys handle these situations?

First I ask "What do you think?"
Then, I ask "Will you disappointed to hear any particular answer?"
Sometimes kids ask questions because of something they overheard but do not really want the the truth... the weirdos!
If I sense they still WANT to believe I just tell them "It's okay to believe. I believed in the toothfairy and she visited me until I lost all my baby teeth."
But if they have THE LOOK I tell the truth and let them know I still want their lost teeth. Great time to show them their collection if you kept 'em!

 

[disneymom3]

DM3
I cannot remember if you have had a sensory profile/evaluation done for you son. My DS has some significant sensory differentials when it comes to tactile issues (one is short term pain) others are shirt tags very soft touch etc (standard or strong pressure is fine). If we did not know this we would think his obsessing, fear and anxiety over things like blood draws would appear to be "irrational" and in need of intervention when actually with the level of perceived pain that his reaction are quite rational (imagine if someone told you that they were going to take a drill and drill into your arm in a couple of weeks, what would your reaction be).
The good news is that there are starting to be clinics which specialize in our kids and use appropriate techniques to lessen the perceived pain and trauma.
Just a thought, since sensory issues can generate anxiety and associated maladaptive manefestions well beyond any of the other difference our kids have.

bookwormde

Yes he has a diagnosis of SPD, not that the insurance company would agree. But heck, I don't care what they want to call it, nor do I even know how our OT bills it, as long as they pay. What I struggle with is that people simply don't get it. We had a nurse who after I told her that he needed to know exactly what was happening, still told him she would put the needle in on three and then did it on two. Gee, thanks, lady. Now, I can't even rely on his anxiety being at least somewhat lowered by having the control of predictability.

Thankfully I called the urologist today and got a definitive answer that he is not going to have to have a blood test this time around. Not to take that for gospel, I left a message that I want to hear from the dr himself that he won't want any blood.

For those of you with more experience in this sensory realm, would Emla cream help, do you think? Or is not going to be effective when the entire nervous system is off? I know he experiences it as severe pain. He also says the needle hurts way worse coming out than it does going in, which I find interesting. He says it yanks on his arm. Poor little dude. I can't imagine living in his skin.

 

[bookwormde]

One thing i have noticed is that tactile sensitivity does subside to some extent as our kids get older.

bookwormde

 

[disneymom3]

Some of the things Temple talks about make me so frustrated. She talks about her mom made her have manners and she knew when she could stim and when she couldn't (never at the dinner table). However, my dd doesn't seem to have that control. EVERY SINGLE time I wash her hair she has a horrible meltdown. EVERY SINGLE TIME. It's a fact of my life. I wash her hair 2 x per week and those nights are horrible for me. I will try and try to ease her into compliance but I basically end up washing it as fast as I can while she is screaming and trying to get out of my grasp. I've tried visors to keep water out of her hair, etc but she absolutely hates the feel of water on her head. Not to mention the comb through her curly locks afterwards, despite excessive application of conditioner and detangler.


:

I am so thankful that DS is a boy because of this issue. He could sure do with a hair cut more often but since that is a trial beyond my general energy levels, he doesn't get one too often. At least the hair washing is not as hard as with most girls though. He also hates it. How anyone could get him to NOT react to that is beyond me. DH says I am the best with this kid and can get him to do things at least somewhat calmly that he, himself cannot ever do and yet, hairwashing is without a fail a horrible experience. We were going to one hairdresser who kept harping on how he really needed his scalp cleaned better. Yeah, right. Good luck with that. We don't go to her anymore. I have tried all that you have said too, and nothing works for us either. I sure am open to suggestions though!

Truthfully, I think the only way I could eliminate the triggers would be to home school. If I could figure out how to do that, along with quitting the groups we are in like Girl scouts (which we are quitting after our commitment this year) my dd would be much less anxious. Unfortuantely, that's just not possible. I have started looking for a high school girl to watch dd during the summer (one on one). I just think that is my best option.

Well, if it makes you feel any better my son IS homeschooled and still has a ton of triggers. I work my butt off to accomodate his needs, but there are still somethings that have to be done and from one day to another, you never know what is going to trigger and be too much to handle. Last week, he was sure he was smart and good at math. Today, he was very distracted and unable to sit still etc. Called himself stupid I don't know how many times
[

 

[GraceLuvsWDW]

One thing i have noticed is that tactile sensitivity does subside to some extent as our kids get older.

bookwormde

What is frustrating is that it is often in phases. I'll think it's getting better, well at least some of the sensory stuff, and then out of nowhere it becomes ultra sensitive again.

When dd was almost 5, I had always cut her hair myself, well Her Grandmother (MIL) on one visit gets it into her head that she's going to take dd out for a haircut. We go to child hair place and dd has massive meltdown when I tried to get her to sit in the chair. (not so dear)MIL huffs and walks out and says I need to get control of dd and she cannot act that way in public. Since that time, I took her to the same place numerous times. Most times she wouldn't let them cut, sometimes she would get in chair then change her mind, but on 2 occasions she let them cut her hair! Oh let me tell you, she got an ice cream after those visits!!!

Well, that place went out of business this summer. I have thought about cutting all her hair off short but worry about her adjusting to that. When I mention it, she is adamantly against it! Just between us, I've thought of cutting her hair off while she's asleep. I know that sounds horrible but these hair washing nights are more horrible imo!

 

[bookwormde]

Sensory issues are closely linked to anxiety in a loop so if anxiety is up from social issues then the sensory sensitivity goes up dramatically and then with more sensory issues anxiety goes up even more until the spiral is broken (by a meltdown or a better enviroment).

bookwormde

 

[Earstou]

For those of you with more experience in this sensory realm, would Emla cream help, do you think? Or is not going to be effective when the entire nervous system is off? I know he experiences it as severe pain. He also says the needle hurts way worse coming out than it does going in, which I find interesting. He says it yanks on his arm. Poor little dude. I can't imagine living in his skin.

My my ds, just seeing the needle sets him off!

 

[kirstenb1]

What is frustrating is that it is often in phases. I'll think it's getting better, well at least some of the sensory stuff, and then out of nowhere it becomes ultra sensitive again.

When dd was almost 5, I had always cut her hair myself, well Her Grandmother (MIL) on one visit gets it into her head that she's going to take dd out for a haircut. We go to child hair place and dd has massive meltdown when I tried to get her to sit in the chair. (not so dear)MIL huffs and walks out and says I need to get control of dd and she cannot act that way in public. Since that time, I took her to the same place numerous times. Most times she wouldn't let them cut, sometimes she would get in chair then change her mind, but on 2 occasions she let them cut her hair! Oh let me tell you, she got an ice cream after those visits!!!

Well, that place went out of business this summer. I have thought about cutting all her hair off short but worry about her adjusting to that. When I mention it, she is adamantly against it! Just between us, I've thought of cutting her hair off while she's asleep. I know that sounds horrible but these hair washing nights are more horrible imo!

Grace, take this for what it's worth....What about telling your dd that IF she wants to keep her hair longer, it needs to be washed consistently, with no drama. Can she draw the connection that long hair is a privilege for people who are willing to take care of their hair?

Our older, NT daughter kept asking me for long hair (her hair is very fine, and stick straight, so not a great candidate for long hair, but I digress), however she wouldn't wash it every night. I told her as soon as she could show me she was taking care of her short hair, then she could have it long. And she did.

I can hear and picture the frustration in your post. Honestly, I probably would have had it cut short a long time ago, then let her work on earning longer hair.

 

[kymmyk13]

DD decided to ride her bike down the stairs last night and at the local hospital she was so combative they gave her 3 shots of morphin and they still could no get a ct scan so they had to restrain her with a board and all these straps and transported her to children's hosptal 1 1/2 hours away, she is ok but lost her front two teeth. I am now afriad I will never be able to get her to go to the Dr. again. I never thought about how we would handle a situation like this, anyone have an suggestions to help me help her at this point.

 

[kirstenb1]

DD decided to ride her bike down the stairs last night and at the local hospital she was so combative they gave her 3 shots of morphin and they still could no get a ct scan so they had to restrain her with a board and all these straps and transported her to children's hosptal 1 1/2 hours away, she is ok but lost her front two teeth. I am now afriad I will never be able to get her to go to the Dr. again. I never thought about how we would handle a situation like this, anyone have an suggestions to help me help her at this point.

I would ease her back in, maybe the next doctor visit(s) is actually for you or another family member. Your 5 yr old merely accompanies you, nothing else.

This is how I got our 4 1/2 yr old to finally let the dentist examine her teeth. The first few visits, she came along with our older dd and me. We didn't pressure her to have her teeth cleaned or examined. She got to watch.

This knocked down her fears, and last fall, she let the dentist clean her teeth.

I can sure understand your worries about your daughter. What a traumatic experience for both of you.

 

[kymmyk13]

I would ease her back in, maybe the next doctor visit(s) is actually for you or another family member. Your 5 yr old merely accompanies you, nothing else.

This is how I got our 4 1/2 yr old to finally let the dentist examine her teeth. The first few visits, she came along with our older dd and me. We didn't pressure her to have her teeth cleaned or examined. She got to watch.

This knocked down her fears, and last fall, she let the dentist clean her teeth.

I can sure understand your worries about your daughter. What a traumatic experience for both of you.

One problem we have is that I have to take her back to Children's hospital tomorrow to see the dentist, one of her teeth next to the two she lost was forced up into her gum and they are going to check that and decide if they need to do anything else

 

[kirstenb1]

Kymmyk13, I was afraid of that, and hoping it wasn't the case. I guess what I'd do would be to offer her a HUGE bribe, and PRAY!!!

 

[GraceLuvsWDW]

Hello all! Just checking in.....

Can you hear the moans and groans from where you are from my dd that she has to wait FOUR years for the next Winter Olympics????

We are still struggling with the school. Yes, I know same old story! Today, when I took dd to school her teacher was in the hall talking to other teachers. We waited, and waited, and waited.... Finally she came up and I explained dd was afraid to use the pony pass, still didn't want to go to school, and was complaining about "rhythms" (what that is I don't know ). Teacher turned to dd and said "You know you like school now don't do this to your mom" . DD turned her head to the wall, shaking it and saying "no, no, no". I told the teacher that she should take this seriously, that dd has trouble expressing herself and that we needed to work on finding out what the aversions are. She just responded by saying "leave her with me, she'll be ok". {insert picture of mean ole mama bear with steam coming out of ears}

I really don't know how to battle this "just ignore it and it'll go away" mentality of the school. If I call a meeting or shoot an email everytime something like this happens I'll just be seen as a whiner. Does anyone have any ideas for diplomatically making them take dd's issues seriously? Or are you all of the mindset that I should give up on the negotiating and make a complaint? I know all of you are as tired of all of this as I am.


On another note, dd "graduated" to a big horse for the horseback riding. She was on a pony now she's on a giant Quarter Horse. You should see the beaming on this child's face when she was able to ride a "real" horse. I have to say the positive influence of horse riding alone is monumental. If I had to drop all but one therapy I'd definitely keep the horse riding! She has created such a bond with the riding instructor and the instructor is very good with developing social skills too (speak up, look at me, watch your posture, be firm with the horse, etc). She does these with the loving personality so dd responds well without feeling frustrated. They trail ride and talk about Olympians or American Idols and dd has taught the instructor all the names of the Iron Chefs.


kymmyk13, hope your dd is ok and you made it through the follow up appt ok. I know with dd there would probably have to be some kind of medicating involved, as sad as that sounds.

15 Days until our next WDW trip!!!!!!!!!!!!

Suitcase is out, let the countdown begin!

Hope all is well with everyone!

 

[C&G'sMama]

Grace - Please keep venting away. But I do think you need to do something formal. It's obvious they're just throwing you bones to keep you at bay. I'm sure their hope is that you give up and leave. That's how the schools handle "trouble makers" (or as I like to call us, people that are asking them to actually do their job and follow federal laws)

Love the horse thing. That's great.

And Iron Chefs. My kids love the Food Network. Especially the challenges.

Please keep us posted but my opinion from well over 1,000 miles away is either get out (don't feel like you've lost anything if you do, we left our district schools after 2 years of battles (not even around special ed issues). Or if you feel the district overall is good and is a good fit for the long-term, get an attorney.

 

[bookwormde]

GraceLuvsWDW
It is amazing how much difference one item such as horseback riding (with an instructor who "gets it") can make.
I agree that the school is just throwing bones to keep you at bay. You need to get with your advocate and get the formal IEP classification done and a full and comprehensive (and enforceable) IEP in place.
You are going to have to take them through process (probably several times).
bookwormde

 

[jodifla]

Grace-- Have you had a Board Certified Behavior Analyst assess your daughter and do a functional behavior plan?

Really good behavioral analysts can make a huge difference! I saw it firsthand with my son. I went from getting "C. had a difficult day today" every couple of days to an all-star behavioral report card within a week after the plan!