Behavior Challenge Thread

[GraceLuvsWDW]

Well, my dd hardly ever watches tv. Never network TV and only sometimes will she actually sit and watch Blues Clues or Elmo or Mickey Mouse. She doesn't understand the social back and forth of TV. I have tried to take her to the movies and about 5 minutes after the intro she's lost and wants to go. I don't think it's attention because she'll ask me "why did he say that?" and "why did she do that". We went to see UP! and she couldn't get past the beginning of that film because she was lost. So the idea of Sully, while very cute!, would be lost on her. And she does wimper in her sleep. I don't know how I would monitor the wimpers in order to redirect her nightmares. I'm always so afraid I might wake her up and getting her back to sleep is no easy task.

I am trying to figure out if this was a "night terror". Now 5 days after the dream she is still frightened and asks me several times during the day and especially leading up to bed time "Am I gonna have THE dream again?". I tell her no, we don't have the same dreams twice and I tell her all the things you guys mention about dreams aren't real and they can't hurt you. But she looks at me and says yes they can, I was there and it hurt. So I'm at a loss on how to respond to that?

She has had a lot of fear issues this week I guess due to the dream? I tried to get her to watch Pinocchio (because I wanted to watch it ) and she acted terrified throughout the beginning (where he turns into a boy and when Honest John tries to trick him). I finally turned it off in frustration when she started to cry. How can a 6 year old be afraid of Pinocchio??? I'm trying not to be too non-understanding about it but really I don't understand???

Anyway, such is our lives. No one can understand how hard the simple things are in our world. Sleeping. Brushing Teeth. Washing Hair. Separating at school each morning. Even getting her seatbelt buckled without a fight is often a fiasco. I'm sorry, I'm love my dd VERY much, more than anything, but I really wish I could have an easy day SOMEDAY.

Thanks for letting me vent.

 

[BeckyScott]

Is she having difficulty with "real" and "not real"? It sounds like maybe that could be part of it? If she believes everything she sees is real, then a nightmare would be a big problem. She says in the nightmare, it really did hurt. But when she woke up, it didn't still hurt. She didn't have any broken bones or bruises. So it wasn't real. Maybe it did feel real at the time (gosh, I've never had a dream that actually hurt like that, I don't have any idea what that must have been like for her).

I know you don't want to wake her up, but it might be good for her to learn that it will stop when she wakes up. Justin sleeps like a log, I wasn't worried I'd completely wake him. But overall it might be worth taking the chance.

And I don't know how you'd work on it, even, my boys caught on pretty well by themselves. They always wanted to know how things worked, and so I explained to them from very early on about how television and movies were done and special effects and stuff. We didn't get to have the "magic" of Disney but that's fine. And DH and I have had to be very very clever on holidays, if you kwim.

I guess you would start with cartoons. Since they're drawings they're not real. Show her how cartoons are made. (I bet there's something on youtube about Disney cartoon drawing even) Cartoons and Pixar films. The next step is (unfortunately) human beings dressed in big fur costumes.

The problem I had was that Richard then thought that everything on tv was fake. (no concept of gray areas) Even now, and he's almost 12, he'll ask me if something on tv is real or not. Things that are borderline, like reality tv shows or "fake" news or some news story that is real but totally crazy, he's got the rest of it figured out. I mean, from a kid's perspective it's really hard to tell now. It used to be pretty straightforward, but the technology is too good now, you can fake almost anything, and it all gets mixed together. People dressed in big fur costumes aren't really that character, but they can be standing right next to a real human being. You can photoshop my head onto Linda Hamilton's body. (please do!) But yes, the family on Little People Big World are real. It's very tricky.

 

[bookwormde]

Vent away, the age she is at, particularly with her exceptional intellectual vs. social/ sensory differential it is one of the most challenging for her and by extension you. There will be “easy and wonderful” days in the future, particularly as you complete that diagnostic process and get good clinical recommendations to help your daughter and as you become better informed about her neurovariations.

One anecdotal experience just does show that some things, which might seam “important” in the bigger picture, really are not. We had a battle to get our DS to brush his teeth (sensory sensitivities to pain, and texture and taste of the toothpaste). In consulting with his dentist she said to just have him brush with no toothpaste. This actually worked and at the age of 8 he saw and educational cartoon on dental health, next day he was trying toothpaste again (as he had gotten comfortable with the tactile issues with brushing) and while it was a challenge for him with the additional maturity and logical motivation he made the transition virtually all on his own. This is not to say that we do not have to have some type of reminder for him, but is it not a “battle” with the associated anxiety. So his teeth did not rot out of his head, we did not have an unnecessary and damaging battle each day, and in the end he learned the skill in his time. This is the approach we take with most skills since in the end when properly analyzed there are very few “must skills” that are immediate necessities (such as wearing a seat belt system). Quite honestly if you have already had other battles with her, managing to work on the “priority” seat belt skill is 100 times more difficult. We have learned that letting things occur in “their own time” was one of the hardest skills for us to learn as parents but makes all the difference (of course that is easy for us to appreciate as our child matures and things we “gave up on” a few years ago are accomplished in a relatively matter of fact way).

Also as you daughter has an extra dose of sensory sensitivities so creative alternative for some needed activities may be required (finding a good support group is great for this), as currently these activities may be quite uncomfortable, the good news is that this improves “rapidly” (I guess it only seems rapid in hindsight) with age and an overall lowering of anxiety levels.

Hang in there you are working your way through the roughest part.

bookwormde

 

[GraceLuvsWDW]

I don't think she has a problem between real and not real. But she is extremely sensitive. Things like seeing scary things in a show or having a nightmare seem to disturb her much more than what is age appropriate. That is what is so confusing-some things she simply reacts as a much younger child would. These things don't seem to get better with time (maybe I am just being negative today). The social skills, the rigitity with doing things "her way" and her routines. It makes me crazy sometimes. I think why can't she just buck up and do this? Like put on her seatbelt. Like brush her teeth. Like get over a nightmare. Like taking gymnastics (or any group activity). Like going to school without a fight. I do "drop" some things like eating and sensory issues like noise sensitivity and I always buckle her seatbelt, and I get her dressed in the morning, brush her hair, etc. Even though I feel she should be doing these things at 6. A part of me thinks I should force the issue, life is not going to do things for you, you have to learn to do them on your own. But I am firm with prompting and supervising toothbrushing. And bathing, which she is much better on except for hair washing. I've drawn the line at helping her with bathroom duties (sorry if that's tmi) and she just does what she can there.

I know she is a blessing and gifted in so many ways I just get down sometimes that she is debiliated socially and emotionally and that really weighs on me as her mother. I just want her to be able, happy, and adjusted and those are things we struggle with on a daily basis. Then I struggle with: what can I do to help this? I don't want to "check out" like some people do but I don't want to be her enabler either. I want to push her as much as I should to get her to reach her capabilities.

I watched a youtube video of Temple Grandin? speak. She talked a lot about how she was raised with certain rules and no matter what she didn't break them. No stimming at the table, etc. While we these days are into celebrating diversity and modifying to accommodate she was advocating getting these children to adhere to certain basic rules. I think we as parents tend to empathize with our children and say well I just won't push this right now but I've really been thinking about the basic principles of society (kind to others, behaving in public, etc) and how the EF differentials make understanding those principles hard for these kids. And how can I create an atmosphere of "you can do this" moreso than "there's just not any other option". And I've posted this before: it's just so hard to distinguish between what is NV mind at work and what is behavioral and what may be a mixture of both. Which things to tackle as "absolute rules" and which are bendable and how to determine which stance is best for her and her adaptability long term.

Thanks guys for being my sounding board.

 

[saveaquarter]

Hey guys. It's been a while since I even logged in, I hope everyone's doing well! I just thought I'd drop in with a little update. I had the twins, despite my outdated signature

J, on the other hand, is not doing well at all. He's been hospitalized for the past week, with no end in sight. He's been in constant pain and it takes all his strength just to stay awake most of the time. Hopefully the barrage of testing he's being put through will yield results. Keep us in your thoughts and prayers.

 

[bookwormde]

I hope J gets some answers, the only thing worse than feeling badly is feeling badly and not knowing why. Hang I there and when you have some strength and time of course everyone is waiting in some “twins” reports and anecdotes.

One thing to consider is that while physiologically we are identical to NTs (quantitative test will be the same) the more subjective information that clinicians get from us is often misinterpreted, especially where sensory differentials are concerned, and the clinician is poorly informed about NVs, so that can make diagnosis a little more difficult.

bookwormde

 

[BeckyScott]

Then I struggle with: what can I do to help this? I don't want to "check out" like some people do but I don't want to be her enabler either. I want to push her as much as I should to get her to reach her capabilities.

You're doing it, it's just on a different time frame that other parents. That's the way I look at it.

Like Justin. His speech was delayed. He was running about 3 years behind. But he was making progress, at about half the rate of "normal". But then I thought to myself, okay, language-wise, after about age, I don't know, 11 or 12, how much "progress" does one make? Sure there are vocabulary words added, but just normal talking to people, by early teens at the latest, you carry on a conversation fine. So maybe he doesn't do that until he's 17 or 18. That's still plenty good. That'll work.

And maybe he always has velcro shoes, but there are bigger fish to fry and I am sure that shoe-tying is not a mandatory skill. And maybe he never rides a bike, but is that really a big deal? My fat butt hasn't been on a bike for years. You pick your battles, and it sounds like you've been doing a good job at that. Decide what's most important, what's really necessary. He still has shoe-tying on his IEP and honestly I don't care if he never learns it, but if it makes the OT happy to keep trying then {{whatever}}.

There are plenty of things that are usually in place by the time a kid turns 11 or 12 or so. At that age, some kids you can even leave alone at home for a short while (not that WE do that, but I know several latch-key kids that age). So our kids won't be ready for that then. Maybe they'll be 16. Or 18. Or 25. I look at it as a delay, not as a never. Maybe Justin won't be ready to leave home at 18. He may be in his 20's. But it will happen, some day. Not on everyone else's schedule. There are plenty of years left, right now, time to put those things in place. He needs to learn to take care of hygiene, feed himself, handle money, use words to explain what he needs. And he needs to learn when to call someone for help.

 

[saveaquarter]

One thing to consider is that while physiologically we are identical to NTs (quantitative test will be the same) the more subjective information that clinicians get from us is often misinterpreted, especially where sensory differentials are concerned, and the clinician is poorly informed about NVs, so that can make diagnosis a little more difficult.

bookwormde

This has been a big problem. J seems to have an incredibly high tolerance for pain, and what he describes as 'hurting a little' would be absolutely crippling for the average person. It presents a bit of a challenge for those working with him.

Thank you for the well wishes. I think he'll finally get the treatment he needs with this.

One thing that has absolutely every one of his doctors stumped is his sweat. It's congealing into a gel on his skin, and has been for a few weeks now. It's bizarre and unnerving, we've never seen anything like it. Has anyone ever heard of or seen something like this?

 

[bookwormde]

Wow it sounds like you do have quite a mystery on your hands. If it was just standard secondary hyperhidrosis from the excessive pain, that would be expected but the congealing adds another whole anomalous area. I assume they ran the standard blood work when he first presented and nothing showed up that would account for the pain (salt imbalance or something like that). There is a pretty standard lists (although quite long) of diseases, medication and other conditions that is typically gone through to see if any of then are the cause of the sweating. Some of them can be accompanies by pain which is why the sweating secondary effect with some.

I assume by now that they have excluded Hyperthyroidism/Gravis disease since if his pain was muscular based that would be one of the first on the list and with the broad effects of the thyroid on then body, while rare could be a reason for unusual content of the sweat.

If this set of tests does not bring answers I would make sure that his doctors are in contact with the pathology department to see if there are any similar cases in there files or from sending an inquiry through their “networks” (which tend to be much better than the standard medical system). Also if they can obtain a big enough sample of the sweat and evaporate it and run it by a scientific (not a medical) mass spectrometer is the surest way to at least know what elements might be a part of the molecules causing the congealing, again the pathologist would probably have the best access to this (not in house though). If it comes back with metals or some other unusual element that might be a good clue. It is funny I had another occasion to learn about hyperhidrosis this week as a side effect of chelation.

bookwormde

 

[GraceLuvsWDW]

One thing that has absolutely every one of his doctors stumped is his sweat. It's congealing into a gel on his skin, and has been for a few weeks now. It's bizarre and unnerving, we've never seen anything like it. Has anyone ever heard of or seen something like this?

I actually have heard of something like this. I think it was due to a drug interaction in the end. I don't remember the drug names, I think one was a cholesterol lowering drug. Is he on any medications?

 

[C&G'sMama]

To Saveaquarter

Glad you checked in with us. We're definitely sending good wishes and prayers your way.

Ann

 

[Kazzy1548]

Hi GraceluvsWDW,
When I read your post I saw my DD in your DD. She was diagnosed ADHD with Anxiety when she was 7 and dyslexique at 9. She is now approaching 10 this year. It has been a struggle with he fears and kerks about social issues. We would still expose her to her anxieties but however gave her some comfort. In the movies she use to yell and cry, saying that it was to loud and that she didn't understand, she had a thing about entering the movie theater when there was nobody in there, and she would seek out any kids her own age to see if it was appropriate for her. We used to bring with us a pocket light and a comfort toy with , we would gradually ween her off of those object . Today she runs into the movie theater and chosses the seats, She says the best seats our in the middle. She still have some issues but is trying to expose herself slowly. She was not ready to watch the new Harry Potter yet, but she is working up to it but watching the series before on DVD.
It was explained to me that she has a lot of imagination and didn't quite understand it when she was young, now she is able to verbalize them. Such as when she was younger she didn't want to go in a canoe. She would have a full blown crises. Now she tells us she used to think there where sharks and whales that would come and swallow her up. Sounds familiar....
Don't despear there is always a light at the end of the tunnel.

 

[DisDreaminMom]

Kazzie, welcome. Sounds like we've all got kids that have quite a few common quirks. It makes things better when you are not alone.

Saveaquarter, I hope everything is going to be OK. Hope twins are healthy and you are getting some rest. When I read your message about the strange symptoms, the first thing I thought was, "Where is Dr. House?" All prayers are with you and your family getting through this tough time. Give J our warmest regards. Keep us posted. And take care of yourself;as in, get some rest and don't overdo it. Easy to say, hard to do, I know.

 

[disneycruising]

Hi everyone,

I just wanted to take a moment and tell you how much I am loving this tread. It is nice to know that I am not alone in my stuggles with my own DD with Asperger/ADD.

 

[KirstenB]

Save a quarter, I'll say a prayer that J gets well soon. Hugs to you and your new twins! Congratulations!!

 

[GraceLuvsWDW]

Kazzy, thank you. It really helps to know others have gone through similar issues and made it through.

DisneyCruising, welcome to the thread. Wow, all those dcl cruises? I'm so jealous.

DD seems to be doing better! Hooray. The mentions of the nightmare are fading and it seems she's starting to trust that it won't reappear. She does mention it but the redirection works and I don't see the obsessive behaviors like before. One day at a time I guess.

Hope everyone is doing well. And wow, congratulations on the twins. What a handful especially considering the other issues going on in your life. Hope you're making some headway.

 

[saveaquarter]

Wow it sounds like you do have quite a mystery on your hands. If it was just standard secondary hyperhidrosis from the excessive pain, that would be expected but the congealing adds another whole anomalous area. I assume they ran the standard blood work when he first presented and nothing showed up that would account for the pain (salt imbalance or something like that). There is a pretty standard lists (although quite long) of diseases, medication and other conditions that is typically gone through to see if any of then are the cause of the sweating. Some of them can be accompanies by pain which is why the sweating secondary effect with some.

I assume by now that they have excluded Hyperthyroidism/Gravis disease since if his pain was muscular based that would be one of the first on the list and with the broad effects of the thyroid on then body, while rare could be a reason for unusual content of the sweat.

If this set of tests does not bring answers I would make sure that his doctors are in contact with the pathology department to see if there are any similar cases in there files or from sending an inquiry through their “networks” (which tend to be much better than the standard medical system). Also if they can obtain a big enough sample of the sweat and evaporate it and run it by a scientific (not a medical) mass spectrometer is the surest way to at least know what elements might be a part of the molecules causing the congealing, again the pathologist would probably have the best access to this (not in house though). If it comes back with metals or some other unusual element that might be a good clue. It is funny I had another occasion to learn about hyperhidrosis this week as a side effect of chelation.

bookwormde

It's definitely not hyperhidrosis, as most areas of his body have ceased to sweat completely. He's only sweating from his back, legs, chest, and butt now. His arms and underarms no longer sweat at all. They're not totally sure exactly what's causing it, but chalking it up to a combination of things (dehydration, excess mercury and salt, etc etc) and hoping flooding him with fluids will help.

I actually have heard of something like this. I think it was due to a drug interaction in the end. I don't remember the drug names, I think one was a cholesterol lowering drug. Is he on any medications?

Oh he's on more than I can count. They only add them one at a time, though, so we can pick out the interactions as they come. This started spontaneously, though, nothing had been recently added or taken away. They're chalking it up to excess mercury and salt in his system due to his kidneys not functioning properly, as well as the intense dehydration he suffers from. Hopefully the fluids he's on will correct it.

To Saveaquarter

Glad you checked in with us. We're definitely sending good wishes and prayers your way.

Ann

Thank you!

Saveaquarter, I hope everything is going to be OK. Hope twins are healthy and you are getting some rest. When I read your message about the strange symptoms, the first thing I thought was, "Where is Dr. House?" All prayers are with you and your family getting through this tough time. Give J our warmest regards. Keep us posted. And take care of yourself;as in, get some rest and don't overdo it. Easy to say, hard to do, I know.

If I were a millionaire I'd pay Hugh Laurie whatever he wants to make a stop at the hospital and deliver some test results. Our life feels like one very long episode of House.

I'll let him know you're all rooting for him, he'll love to hear it. Thank you!

Save a quarter, I'll say a prayer that J gets well soon. Hugs to you and your new twins! Congratulations!!

Hope everyone is doing well. And wow, congratulations on the twins. What a handful especially considering the other issues going on in your life. Hope you're making some headway.

It is a handful, I'm very lucky to have a lot of help, with everything going on right now. Grandma is right down the street and very happy to take them, and I have some very close friends helping constantly. I couldn't do it by myself, that's for sure.


Thank you all, and take care everybody. I'll check in again soon

 

[bookwormde]

Savaquater, hoping J gets some answers soon. Actually if sweating has ceased in the primary areas the congealing makes a little more sense. Not being adequately hydrated can enhance many physiological reactions whether it is electrolytes/medications or some combination of those and others hopefully the increased hydration will give relief to the immediate problem.

I am “heavy” (mostly lead contamination from fire fighting) so I know that the combination of dehydration and stress can make this become an issue, triggering events from these imbalances.

One thing also to remember is that groupings of medications that were tolerated initially in optimal health may become an issue with length of time taken, age, general stresses of life and less than optimal health situations.

Best wishes

bookwormde

 

[BeckyScott]

I have noticed that DS has a different reaction to meds than most people. I have always chalked it up to his immune system being wacked. (not strong, not weak, but very different)

For example: he has hydroxyzine for the eczema itching, and I know for most people, myself included, it will knock you on your butt. Doesn't affect him one bit that way. Or prednisone. He's been on prednisone before for his asthma and it doesn't "hype" him up. Before his dental surgery they gave him a valium-kinda thing, and he was sitting up on the gurney chatting away with the nurses, didn't do anything to him at all except possibly make him more talkative. Stuff like that. Never sweating, though. But I've gotten kinda used to the idea that whatever the typical effects would be for any given med, he probably isn't going to do it.

 

[DisDreaminMom]

Becky, a thought for you...re: DS's reaction to certain meds that normally have a reputation of a doping effect. I have found that if I took that stuff and I really actually needed it, it didn't knock me out. It's like how Dr.'s used to tell me as a teen not to use my asthma inhaler as a stimulant. I used to say, " If in stimulant, you mean, I would like to continue breathing, then OK". I guess some kids were faking asthma to get inhalers to huff. And we won't even talk about the people I know who regularly use antihistamines to "settle" their kids. Bottom line, if it's working the way it's supposed to, then maybe DS is just returning to his "normal" and it's not acting funny in his system.

And if you give a sedative to a person (or animal) that is already really keyed up, sometimes it will have a stimulant effect in a big way. (Big problem for horses, by the way...)

Along a completely different line of thought, Bookwormde, are you like a superhero or something? Firefighting, analyzing ASD info, insane medical knowledge? I've said this all along, but you totally rock...

Need brainstorming ideas for DS who refuses to wear night diapers but is more miss than hit on the night potty thing. I guess he seeps so soundly he's just not waking up to go. Funny thing, he never wet the bed in Disney hotels...Can we live in Disney hotels? I try to cut off liquids by about 6, but it's not helping much. I don't want to dehydrate him, either.

Oh, making all kinds of GF foods, mostly as an experiment for my nephew who can't tolerate wheat. Some of things I've made, the family actually likes better than the flour based normal versions. I'm trying to gradually get everyone on board. I will say, I feel better cutting the flour out. And I haven't had a soda in a week. Feel five pounds lighter, but not as much energy. I didn't admit to myself how much I was living off the giant quantities of sugar in my diet.