weird

[Jena]

so difficult child reacted so weird tonight i'm sorry i know im posting alot about her as of late. it kinda seems like the puzzle we all thought we had figured out we may not.

she almost hurt herself today again over flushing the toilet. she cant 'stand flushing the toilet the noise of it freaks her out. so we were out somewhere and she ran so quick to get away from it she almost hurt herself. this was before she broke her wrist. than at bedtime i bought her a relaxation cd.

i put it on and she totally flipped out. now she flips out alot yet it was bad. she screamed cried called me names i stood strong thinking it was a behavioral usual difficult child bedtime thing. yet i don't think it was.

she got really upset it was just a waterfall bird sounds etc. than we got home today and i took a unplanned five min. break and so she got soo upset with-me over it.

i dont' know my wheels keep turning in the puzzle of my little girl. i see so many things in there. i see asperger's when i see how she gets when things dont' go according to plan, than the sensory issues, the socialization awkwardness.

thoughts again? sorry for being annoying i appreciate it.

 

[HaoZi]

Mine has off and on issues with the toilet flush noise, usually public bathrooms where there's a lot of echo. I recall having issues about it myself as a kid, partially the noise and partially this weird fear that it was going to drag me down, too. Sometimes closing the lid helps muffle the noise. Or could she wear her ipod into the bathroom to help mask it?

 

[Jena]

hmm interesting. thing is if it is asperger's than a totally different way of handling a kid who come into play. i just sat thinking why does my kid do all that stuff? everyones' been so geared on the bipolar diagnosis for years. yet truth is asperger's if not treated in some way can lead to extreme anxiety, social phobia school phobia and moodiness. i would think.

so it's kinda like what came first for us the chicken or the egg?? maybe the anxiety and depression came from the asperger's. i know im always clicking away with my mind yet this child has huge problems with schedule change, noises, sensory, communication, relationships, you name it.

is yours able to have friendships? talk? that sort of thing

 

[BusynMember]

I have dealt with an Aspie son since he was two and am a member of a group of one hundred parents (or so) who have kids on the spectrum. She COULD be on the spectrum, but in my opinion it's more. Has she seen a new psychiatrist who knows her history. I know about the therapist, but in my opinion, although he can help, I would be seeing a new and better psychiatrist if this were my child. There's too many things going on that have little to do with Aspergers (again...she may have this too). But again in my opinion that is not the big picture. Father's history is very disturbing and a psychiatrist needs to have full disclosure to diagnose her. She needs medication...the right medications that can helpl her function and she hasn't found that yet.

Right now I doubt anyone is sure what is going on, including new psychologist. Sadly, psychiatry is an inexact science and it's just the particular professional's best guess. Obviously, of yet, she has not had the right treatment, although you have done over and above what a parent can do to try to help her.

Hugs for all of you.

 

[HaoZi]

She tries to socialize. She wants to. She hoovers at it, mostly. She does tend to focus narrowly and on what she likes, runs people over in conversation and gets highly upset if she thinks you interrupted her even if you were only pausing for sentence completion or a breath (the last is kind of an off and on thing, like rambling sometimes). She is better with older or younger kids over her peers, though she has one or two she describes as friends. One thing I'm paying more attention to now is her tendency to say things like "I sounded like so-and-so when I said that, let me see if I can do that again." At first I considered it along the lines of comedic impression, but I'm starting to wonder if it's more of the mimicking tendencies of Aspies.

 

[svengandhi]

My oldest boy is closest to Aspie (I believe his issues are lead poisoning related but the closest thing they are to is Aspie) and if your daughter is Aspie, she also has other stuff going on. We sent my oldest son to a BOCES HS that had an Aspie program so I have gotten to know a lot of them. Also, I went to Bronx Science in the '70's, before Asperger's was "discovered" and due to the nature of the school, there were a lot of kids who would nowadays be called Aspies but in those dates were just "nerds" and "smarties."

Many kids have toilet flushing phobias. Mine never did but one of my friends has a son who couldn't be near a flushing toilet till he was a teen. He's now a grad student at a top school and they never did figure out the source of his phobia. My friend thinks peer pressure finally "cured" him - he wouldn't go to sleepovers because he didn't want other kids to know - when hanging out with friends became important enough, he dealt with flushing. He used to close the lid, flush and run out, closing the door behind him.

As for the relaxation CD's, they make me want to jump out of a window. I can't stand that waterfall noise, it grates on my nerves. Maybe she just needs a different sound. Have you tried getting a book on tape that she might enjoy and let her listen to it while going to sleep?

You are so determined and your daughter is so lucky to have you as her mom.

 

[DDD]

I'm with Sven on the relaxation tapes. Some of them grate on my nerves and I just have to turn it off or flee. I purchased a radio that had like five different "soothing" sounds for easy child/difficult child (ocean, birds and three others) he gave it away within two weeks.

Could be she has AS but since there is no cure I don't think it would likely be the primary souce of her issues. The old expression "follows the beat of a different drummer" pretty well describes the AS person. Her extreme behaviors seem to indicate more significant diagnosis's. I can't recall but think you said she had a neuro/psychiatric evaluation when she was little. To me that evaluation is the most valuable tool in identifying dysfunctions. In our case we got multiple dxs that supplemented the AS one and subsequently medications took care (stabilized but didn't cure) of the heavyhitting issues that difficult child had and has.

Is there a type of music she likes consistently or a recorded book that she enjoys? Perhaps she could plug in the earphones when going to the bathroom to change her focus and to muffle the bothersome sounds. Hugs DDD

 

[DammitJanet]

Im not thinking AS is her primary diagnosis either. I dont think I would do well with a relaxation CD myself. Especially not a waterfall one. I would probably have to jump out of bed every 15 minutes to go to the bathroom! They have music channels on cable, maybe she would like one of those. We happened upon one the other night that would be great for kids to go to sleep by.

 

[susiestar]

Try Mozart for bedtime instead of the waterfall cd. I cannot STAND the various waterfall, ocean,whale, etc... nature sounds. I either have to pee - bad or they put my every nerve on edge waiting for something to attack me. I am NOT joking. I am not paranoid except about bugs. All bugs who enter the house MUST be killed. As a kid I was quite positive that if they were not they would go get their entire families to come and get me. I despise bugs. The ONLY bugs that enter our home are suicidal ones. Period. No negotiations. I knew in my head that bugs would not do that but NOT in my emotions. I coudl control it and not show it much but it was a real problem for me.

My husband loves the nature sounds stuff. The last time (and first time) he turned on a waterfall sound while I was asleep they had just put me on a sleeping medication and I wet the bed. I was about 30 years old - incredibly embarrassed and very unhappy with him. I TOLD him why I didn't want the sounds on - that they made me have to pee - but he had to have it proven.

You really need a team of professionals to tease this apart. We can give ideas and opinions but we don't know her. You don't have enough info on the subtle differences of the various problems. What you are going to end up with, in reality, is a whole bunch of different problems. She doesn't have "just" bipolar or "just" ODD or "just" Aspergers. She has a lot of all of them. If you do not tackle the biological part with medications for aggression, mood swings and paranoia and obsessing, you are NOT going to have a child who is ABLE to participate in therapy to the degree needed. The CBT guy sounds really good. Get him to work with you on the price. It sounds like he will enjoy the challenge she presents - esp if you can get her to agree to work with him. For some tdocs that alone is worth more than you pay (told to me by several tdocs who are friends) and a child who is a true challenge is more interesting than all the other kids who have parents who won't follow consistent rules, etc... One therapist friend said that kids like ours that do not respond to sticker charts and contracts and the like are rare and 90%+ of the practice is kids who have parents who have no clue of consistency or boundaries and have just created spoiled brats. Those are not a challenge to treat, or much fun, because the parents undermine so much of what happens. difficult children, on the other hand, are a real challenge once the therapist learns that we really have tried all the normal stuff and been super consistent, etc... - it gives them a real sense of challenge.

I thought the first friend who said this was nuts. Truly funny farm ready, Know what I mean?? THen other friends, incl some who don't know the first one and her friends, said the same thigns. Patients like our difficult children are the ones they are more ready to cut their rates for. They are the patients that books are written about, that tdocs form long term bonds with and that they get a sense of real accomplishment from.

Not all tdocs are like that, but they are out there. I think the one you found may be - but don't ask him up front right away. Except about sliding scale or gettign approved by your ins co.

There isn't one answer or one medication that will help your difficult child. She is just way way too complex and too ill for that. Work on the parent report - I meant what I said if you need help editing it or making it sound businesslike or whatever.

There may be an Aspie component, or a high functioning autism component. But you won't be able to pick just one.