Behavior Challenge Thread

[C&G'sMama]

Keep at it lady. You can get through this. (We're your cheerleading section by the way) At 5' 2" and 262 myself, this is the closest to being a cheerleader I'll ever come. Besides I know you all will let me on no matter my size .

 

[pudge the fish]

All Right Laurie!!!!
if I can come outa hiding and start posting again after your pep talk to me about ignoring the people who were terribly mean and rude to me (so I left as not to annoy anyone)
thanks to you and the chocolate tossed, I will come back to post and hopefully won't be an annoying know it all and be helpful
I will also be a cheerleader for you
I can send you virtual dole whips, chocolate and hugs!
and I ( as other do) appreciate ALL your wonderful info and links!

Pudge

 

[DisDreaminMom]

Oh, I didn't know we had all these nice other folks here with us, but I am glad we do. Welcome, all. Thanks for all being so nice to Laurie. We value her a lot around here. It is, after all, the Behavior Challenge Thread, and we all know the difference between a behavior challenge and a complete twit. People who are mean are just twits. So we are the ones who smile knowingly when we see some kid pitching a fit over a French Horn, or think it's perfectly acceptable to ride it's a Small World After All 45 times in one day with the sole intent of seeing the French Poodle do the can-can.

But woe be the person who makes a snarky remark about one of our own, 'cause rabid dogs and hormonal monkeys have nothing on us when we're mad and protecting the ones who can't or won't protect themselves.

I used to be a nanny for a little boy, "Joe", who liked to wear female type clothes. He loved carrying a purse (so much easier to put stuff in than pockets when you're 6). He also designed the most incredible jewelery. He and I built a 3 story dollhouse from scratch one summer.

Anyway, I was driving him and his big sister and an older neighbor boy to a school function-it was a swanky private school- and so this little boy had a very nice purse with him. The neighbor kid-a bully- starts making fun of my Joe for having a purse. I'm on the freeway, going 65mph. I tell the neighbor kid to stop and apologize. He refuses. I pull over the car and tell this kid to get out. On the side of the freeway. Now. I drive 3 feet, he cries, and I stop, let him back in. Never another word was mentioned about the purse. I was 17. I'm 37 now. I've only gotten meaner...

(What was that about an intense sense of social justice?)

We have lots of tiaras right now at the Disney Store. Maybe we can rig one up for Becky to go with the cape.

 

[C&G'sMama]

.... think it's perfectly acceptable to ride it's a Small World After All 45 times in one day with the sole intent of seeing the French Poodle do the can-can.

You're killin' me. And then I read the part about the bully crying when you made him get out of the car.... That put me over the edge..

 

[DisDreaminMom]

Hey all. I am so sad. It is very late and I just got home from taking a friend out to a movie and some dinner. She has a 9 year old son with SID and recent onset epilepsy and some behavior/impulse/social issues. She had him put in an inpatient mental facility yesterday and is just heartbroken. He was just out of control. He's a bright boy, and I just wonder if he's not Aspie or something along those lines. It makes me sad to worry that he will be drugged and not treated for the cause of his problems, just the symptoms.

So all you out there with our funny ASpie kids- know that all your hard work and love means something when you don't have to get to this point. I just think about what she told me about her son and wonder that if I had not been so aggressive in seeking help for my own son, would my kid end up just like hers? 9 and in a mental hospital? Her kid acted just like mine when he was a baby. The same rage, SID, mood swings, etc. Now after therapy and behavior modifications, my son is coping and her's want to kill himself.

I just want to barge into the hospital and ask what they are doing for this kid and if they are willing to explore allergy, SID, and Aspie causes. And to make sure this kid doesn't go through life thinking he's some kind of freak with mental problems because noone can think outside the box. He's got an IQ over 130, too, they just found out. Where is our Aspie school? Can't we get funding?

I've been working crazy hours this wek and have more tomorrow (I guess it's today already...) Hug those kids tight and keep on doing the right thing.

P.S. Laurie, where is Mom from? I'm so interested. Glad you're back.

 

[mechurchlady]

Hougs tight DisDreaminMom and then cries. It is nice to have people who understand me and care about me. Mom was born in Hines/Paramount west of here. Hun I hope that kid can get the help that I have here, caring people who take the time to think things out and fight. This place is golden and has gotten me through a lot of bad times.

I am calming down but mom is not. Right now was ok with popcorn and soda pop but she waited a bit which means she was not her usual normal self. When I get this funk gooing on then I hurt myself with over eating and not doing stuff. I cannot get my internet ritual back in place. I am still binging on chips but when I hurt from mom that is my solace.

I like ego stroking but really I know inside I am a good person but I ahve lost all self esteem from 50 years of cyber bullies, playground bullies, work bulies, and people who would not know a neurovariant if I ran them down.

I AM A NEUROVARIANT AND PROUD OF IT except for my personallity quirks and other things. It is hard when you are like a dog who chases everything that moves and never stops running. I waste so much time researching on things I should not that I wear myself down.

Becky:
For the lady with the aspie husband I send you hugs and warm wishes and remember that they are a gift to us from God who is all knowing.
DisDreaminMom: I send you hugs and dole whips and a vacation.

bookwormde: you have explained to me and others things that we cannot quite grasp. I do not think Ii would be here if it was not for you encouraging me and getting me to understand what it is like to be a neurovariant in an NT world.

Sue: nyah nayh told you so and one big "did too fail"
you put up with me like the momma I never had, one who cannot take the broom to me but still keeps me in line and listens to me and puts up with me and teaches me how to help people.

thank you all and now I am going to finish some online stuff then itch a bit then nap for 3 hours.

I remember in Lilo and Stitch that the most important character in the whole story was Pudge who controlled the weather. Great things come in small packages like that tiny box of soap that the kids like to fill washing machines, concentrated. Pudge you need to learn how to help people and submit things so people will not call you bad names. Sue will be there if you make a mistake and others here will also be there.

We all need the opinions and information of everyone so we can see many viewpoints. BillSears sees things from a man's viewpoint and I see things from a single lady's viewpoint and Sue sees things from a nurse, mother, and lady's viewpoint. Each sees things differently and the whole picture comes from all of the experiences and not just one person's viewpoint.

Triple snugs Pudge and gives her a Peanut and Butter and Jelly sandwich. Now to ride off on the Hawaiian Roller Coaster.

 

[pudge the fish]

Thanks Laurie! for the PB& J on wheat/Gluten free bread

I guess I got upset at the messages of "you aren't really disabled and you act like a know it all about Disney"- (UMMM see my siggy- I kinda DO know a bit about the place.)

Then I realized the mesages I was getting wasn't from a person who posts over here. it was just silly people being rude.

I have a special Note to share- a friend of my DD has a brother who is autistic. he does NOT speak to anyone who isn't family- he saw my croc's yesterday that have tons of Disney Jibbitz in the holes and informed me I was OK - I liked Mickey. thats all he said "You are OK!" -"You like Mickey"
Mom and Dad couldn't believe it- they said he never speaks to anyone he doesn't know as family. they go to Disney a lot so I think the MOUSE is a universal word for happy

Hugs to allsorry to Hijack the thread-
Pudge

 

[mechurchlady]

Triple hugs Pudge and reminds her of the wonderful story she shared. That should get put in the pixie dust thread. You did not hijack the thread. It is sad when people cannot think about how they hurt others. One dude has ruined my love of another site. I used to love that site but I was just hurt so bad.

Come one Pudge let's share a nice sandwich, they grow on you with time. Thanks for the story, Disney is amazing.


Gets the coffee started for Becky.

 

[C&G'sMama]

Pudge: I think it's almost impossible to hijack this thread. That's the beauty of this place. We can go all over the place and everyone gets it.

Laurie: you made me laugh about some people not recognizing a neurovariant even if they were run over by one. It just makes me think of DS and how he literally bowls people over. Those that know him get it, those that don't give me dirty looks. My looks are much dirtier. Or I use guilt. "I'm so sorry, I hope he didn't hurt you, we are working with his autism specialists on it" I usually get a "gulp" and they run away.

As far as the bully thing. I know it's hard. I'm not there anymore but I used to be. I have always been overweight so I got teased relentlessly as a child and I didn't know how to handle it. It took me until I was after 30. Since then I've gained more weight because I actually started enjoying food. And now I don't give hoot what people think of me. I'm a good person, I'm trying to raise good children and I make mistakes. I know it's not as easy as saying "Don't let them get to you". But I can say try to remember the people that do value you (like us).


Chocolates and hugs back at you.

 

[saveaquarter]

My husband had a doctor's appointment on friday to see if we could try anything in the way of medication or therapy to help with some symptoms associated with his asperger's. We ended up seeing a physician's assistant (not what was were expecting) who turned out to be... well, the proper words to describe him aren't exactly DIS appropriate.

J went into the appointment, and said, truthfully, that one of the best medical professionals he's worked with (and with his lupus, he's worked with quite a few) was a PA. This sincere compliment was met with an accusation of lying, and J was told that flattery wouldn't get him anything. J pointed out his sincerity and the PA told him that no, that wasn't sincere, and he should call it what it is; sucking up.

So that set the tone for a (not-so) wonderful talk.

The PA went on to say that he "doesn't care about diagnoses" and the fact that my husband has asperger's was irrelevant. All he cared about was treating the symptoms, and asked my husband to choose which was the worst and they would treat that today. J brought up his anxiety. It truly is a big problem for him, and does a great deal to impede his every day life at times, but we were hoping to be assigned a therapist to help with that, and possibly one medication to accompany that. No therapy. Instead, the PA wrote FIVE prescriptions. Xanax, paxil, the absolute highest possible dosage of buspar, etc. More than enough to turn J into a complete zombie.

The PA also decided to poke his nose into the seizure disorder my husband has, which is being treated elsewhere by actual, real doctors who are competent and caring and had nothing to do with the reasons we were there.

J was incredible during all this. The doctor was a complete donkey about everything and downright cruel to my husband, especially considering that he had descriptions of my husbands difficulties with interaction written down in front of him. J held it together until we hit the parking lot, then just lost it. He's been a wreck ever since. We're filing a complaint tomorrow.

I will say, though, the nurse who helped him with the initial paperwork was an absolute sweetheart and J loved her.

To add onto all of this, J's uncle, a man he is very close to, who we are naming our son after, passed away saturday morning. It was expected, he'd been fighting pancreatic cancer and had already outlived his initial prospect, but that doesn't make it any harder to deal with. J cannot go to the funeral due to a broken leg, he's in a hip to ankle brace and just can't make the 15+ hour trip, and I was supposed to give birth almost a week ago!

When it rains, it pours...

 

[bookwormde]

Yes please file a complaint; many of the anti anxiety drugs are contraindicated for spectrum individuals except in the full-blown cases of anxiety disorder. For the PA (and I am usually a big supporter of PAs) to say a spectrum diagnosis did not matter is pure malpractice.

bookwormde

 

[C&G'sMama]

Save a quarter - OMG. That's unbelievable (I mean I believe but.. . UGHH). Is it the PA at your primary care's office or elsewhere. Either way at least report it to the Doctor and let the office no that under no circumstance will anyone in your family ever see that man again.

We had something similar happen to us a couple of times. Our Drs. office had a couple of bad PAs in a row. About 13 years ago or more I just couldn't stop eating, I was hungy all the time. Now I'm a pooh sized person and I'm aware I'm overweight, but this was unusual for me. The PA looked at me and said "I'm fat, your fat, it's because we overeat", Yes I know this but why am I hungry all the time. About a year (and 20 more pounds) later, I was diagnosed as hypothyroid. Once I got on thyroid medicine, the insane hunger went away. Then there was the next PA. When DP went to the PA to say she had a bad knee (while we both were and are overweight, we had been going to the gym), her comment was "you know you carry a lot of weight on that" No kidding, but what about my knee, nothing. Then another time she went with a sore throat the PA wrote, "morbidly obese" on the little slip they give you. And this has to do with a sore throat because. DP and I refused to ever see either of these 2. Point is tell somebody, just like every professinon there are good ones and bad ones. The bad ones have no business treating people and no one will know how they are treating their patients if the patients don't speak up.

As an aside. For the last 8 or so years our Dr's office has had the best PA in the whole world. We feel very fortunate to have him.

Good luck.

 

[BeckyScott]

Yes indeed, good doctors are hard to come by.

We used a PA for years, he was great. And then he moved to Florida. (grr! the double whammy! Not only did he leave us, he moved to Central Florida, is that rude or what?)

We go to a clinic, so the clinic had hired an MD to take this guys spot. One appointment, and I didn't want to go back to him, he acted sort of the same way as you all had posted. But in the meantime, DH and I didn't have a doctor at all, the clinic "assumed" that all of the PA's patients would just transfer to the new dr.

Fortunately, so fortunately, the kid's ped is also at that clinic, and she is a total sweetheart. And I get along with her very well, we have sort of a good short-cut vocabulary with each other and "get it done" and she knows I'm pretty opinionated and stuff. And I told her I didn't know what to do, as I didn't like the new dr, and she said she would see me herself. So really right now, my PCP is a ped. But I'm good with that. I think, really, that getting along with the doctor is just as important as however many pieces of paper they have hanging on their wall, if you KWIM, at least for your basic general family doctor. And it's handy because I can combine up our appointments if necessary and just take everyone at once-- and with my kids, that's a bonus.

 

[DisDreaminMom]

Becky, I'm jealous that you got your kid's doctor to see you. I hate going to new doctors because of stupid shenanigans like the ones described here. My kids' pediatrician is so super nice.I wish I could get them to fudge on the paperwork and lie about my age. We won't even talk about how many years ago I was seen by a gynecologist (try the day I had DS, six and a half years ago)

So not only did I have to "take one for the team" and spend Friday night with this distraught woman, but then Sunday I was guilted into spending part of the day with another woman whose marriage is falling apart because her husband is so on the autism spectrum it's not even funny. How about this- he's an accountant (1), he's very opinionated to the point of being irrational (2) he can't tolerate social situations (3), he never makes eye contact (4), he only is interested in what he's interested in-motorcycles (5), he is emotionally distant from his wife and 8 yr. old (6), he has a very sharp sense of humor and an even sharper temper (7), he thinks he is the most miserable person in the world and everyone is enjoying life but himself (8), he is worried that his daughter will hate him for "lying" to her about the Easter bunny, Santa, etc.(9), and finally, he is ready to break up his marriage and make his own child hate him because he can't or won't get therapy for any of this (10).

There you go, 10 reasons why it is important to help our sons grow up in loving homes with loving parents who are honest about life and demand accountability.

I told my DH that I met my quota for miserable people interactions and now I'm through for a while. I wonder sometimes how people can say there is no God, not that I'm particularly religious, but how can so many people get thrown into "random" social situations when they all need help from each other in one way or another. It's just hard to leave it to "chance". I mean, how else would I have met you all? (BTW, Mechurchlady, you do not qualify for the miserable people quota because you are smart and funny and I feel bad for you but you don't make me want to bang my head into a concrete wall)

C & G's Mama, about the weight thing- don't worry about it. I used to be so obsessed with my weight growing up, but I was a nut case trying to do it. I tell my DH that the woman who is obsessed about her weight and controlling everything everyone eats is also a total B*&%$ and you wouldn't want to be married to her because she's no fun. I'm glad you and your partner are so well matched. What a (gulp) healthy way to live! I'm thinking it's worse to be in a stressful family situation for life expectancy than being obese and happy. It's all about the cortisol.

Saveaquarter, I don't know how much filing a complaint would do in this situation. I would ask the next doctor's office to let you meet the provider before you take DH in for the first time. There is nothing wrong with this. I have done it for my son and think that if you are going to have a long term relationship with someone, then you should "interview" them first. If the Dr's office won't comply, then let your fingers do the walking, IYKWIM. Also, when you call for an appointment, ask to speak with a nurse and ask if they can recommend someone right for you in that practice. I bet the nice intake nurse was cringing at the thought of you and your DH meeting the PA. I'm guessing she knows what a blowhard he is.

I have a management interview today at my store. It's the only place I've ever worked where I would not be upset because I didn't get the job. Everyone is so nice and capable. I love Disney.

P.S. Has anyone seem La Nouba, the Cirque du Soleil show? Do you think it would freak DS out? Family wants to go in June, but I don't want to flip his little lid...It's bad enough the Luau dancers will be twirling fire.

 

[bookwormde]

DisDreamMom,

I do not know if you are working further with the aspie husband and wife but here are some reading suggestions. For the wife, (since it sound like the husband is resistant) Alone Together by Katrin Bentley and Aspergers in Love by Maxine Aston might help. For the husband it he will not read Attwoods book try Genius Genes by Michael Fitzgerald and Brendan O’Brian, it might help to get past the if I have Aspergers there must be something “wrong” with me barrier which is indicated by his resistance to counseling. Let the wife know that if her husband can learn about himself and if she can help him to understand some of the rules that once his defenses are down he can be a connected and loving husband and father (more so than the average person in my opinion).

bookwormde

 

[BeckyScott]

DisDreamin, I haven't seen LaNouba, but I've seen other Cirque shows. Personally, with our kids, I would give my eye-teeth for them to go. It was just too expensive to add to our last trip. I think they would eat it up. The only caveat is this- sometimes Cirque pulls people from the audience, I don't know if LaNouba does or not, so you would definately not want to put him on an aisle. I think they always pull adults, though, but just to be safe. Their shows are big-time sensory overload, but at the same time they are pretty much non-verbal (sort of like Wall-E ), they're just way way cool. If your son is a sensory-seeker or overly visual, I'd give it a shot for sure.

I think the reason I'm getting away with seeing the ped, is because we're at a clinic with multiple doctors. And for quite a while, she was the only female there and so she was also doing most of the Paps. And she will still do walk-in same-day type stuff for adults if she has a spot open. So it wasn't too much of a stretch to add me in as a regular patient.

I am having total fits right now with oldest DS's school stuff. I would elaborate but I swear the walls have ears. I so cannot wait for this year to be done. The track record is good- one fifth grader and one third grader, and the third grader went into preschool with an IEP, and this is the first time I've had someone at the school that I just did not get along with. I mean, for all I know, they think I'm evil and talk about me behind my back, but at least to my face I've never had a problem. Ugh. Only two more months....

 

[Brightsy]

DisDreamin,
I've seen La Nouba twice (as well as a couple of other Cirque shows). My kids (DS7 autism, DS9 (almost 10!!!EEP!) ) have seen it once (and a couple others.)
They LOVE La Nouba! We're goin' to WDW later this year and they both asked to go to the show, but, alas, I cannot afford the tickets this time.
That being said, not all kids are going to love La Nouba. My boys hppen to be snesory seekers. They thrive on lights, sounds (although in my younger DSs case the sound needs to muffled w/ his earmuff or it gets too much) and the action. THe music and costumes and everything enthrall them. For any kid who is an sensory avoider this show might be too much. If you have a chance I recommend renting the DVD (Netflix has it I believe) and screening it yourself. I actually had my kids watch the DVD a few times before we saw the live show.For my younger son esp. it helped a lot! He knew what to expect so there were no big surprises, but since it was live it wasn't exactly like the DVD so he got some novelty out of it. Our trip to La Nouba was one of our absolute fave things about WDW.

 

[saveaquarter]

Yes please file a complaint; many of the anti anxiety drugs are contraindicated for spectrum individuals except in the full-blown cases of anxiety disorder. For the PA (and I am usually a big supporter of PAs) to say a spectrum diagnosis did not matter is pure malpractice.

bookwormde

We did that today, and he also had an appointment with his primary care doctor who said two of the drugs that he was prescribed by the PA weren't approved for use for patients with aspergers. She apologized for sending us to that clinic and is going to screen someone new for us.

Save a quarter - OMG. That's unbelievable (I mean I believe but.. . UGHH). Is it the PA at your primary care's office or elsewhere. Either way at least report it to the Doctor and let the office no that under no circumstance will anyone in your family ever see that man again.

We had something similar happen to us a couple of times. Our Drs. office had a couple of bad PAs in a row. About 13 years ago or more I just couldn't stop eating, I was hungy all the time. Now I'm a pooh sized person and I'm aware I'm overweight, but this was unusual for me. The PA looked at me and said "I'm fat, your fat, it's because we overeat", Yes I know this but why am I hungry all the time. About a year (and 20 more pounds) later, I was diagnosed as hypothyroid. Once I got on thyroid medicine, the insane hunger went away. Then there was the next PA. When DP went to the PA to say she had a bad knee (while we both were and are overweight, we had been going to the gym), her comment was "you know you carry a lot of weight on that" No kidding, but what about my knee, nothing. Then another time she went with a sore throat the PA wrote, "morbidly obese" on the little slip they give you. And this has to do with a sore throat because. DP and I refused to ever see either of these 2. Point is tell somebody, just like every professinon there are good ones and bad ones. The bad ones have no business treating people and no one will know how they are treating their patients if the patients don't speak up.

As an aside. For the last 8 or so years our Dr's office has had the best PA in the whole world. We feel very fortunate to have him.

Good luck.

His primary care doctor is with a nearby hospital, we were referred to this other clinic specifically for "couch doctor" services, and, of course, we didn't get a "couch doctor", we got that jerk of a PA.

Also, I definitely know where you're coming from there, I've been overweight most of my life and my last doctor (before switching for my pregnancy) refused to do anything to help me lose weight, or look into the issue. I spent some time in the hospital in high school because I was starving myself then, I asked for some sort of help from her with my weight, which (as she pointed out) places me in the obese category, and her advice was "eat less". Great thing to say to someone whose old hobbies included starvation.

I'm glad you found someone better, and the good news on our end is, he does have a PC who is more than competent.

Yes indeed, good doctors are hard to come by.

We used a PA for years, he was great. And then he moved to Florida. (grr! the double whammy! Not only did he leave us, he moved to Central Florida, is that rude or what?)

We go to a clinic, so the clinic had hired an MD to take this guys spot. One appointment, and I didn't want to go back to him, he acted sort of the same way as you all had posted. But in the meantime, DH and I didn't have a doctor at all, the clinic "assumed" that all of the PA's patients would just transfer to the new dr.

Fortunately, so fortunately, the kid's ped is also at that clinic, and she is a total sweetheart. And I get along with her very well, we have sort of a good short-cut vocabulary with each other and "get it done" and she knows I'm pretty opinionated and stuff. And I told her I didn't know what to do, as I didn't like the new dr, and she said she would see me herself. So really right now, my PCP is a ped. But I'm good with that. I think, really, that getting along with the doctor is just as important as however many pieces of paper they have hanging on their wall, if you KWIM, at least for your basic general family doctor. And it's handy because I can combine up our appointments if necessary and just take everyone at once-- and with my kids, that's a bonus.

The PAs we've seen before (as well as the nurse practitioners) have all been wonderful, it's a shame that this one was so terrible. And expecting everyone to just move to a new doctor is a little ridiculous, not everyone is going to get along with a new doctor.

Saveaquarter, I don't know how much filing a complaint would do in this situation. I would ask the next doctor's office to let you meet the provider before you take DH in for the first time. There is nothing wrong with this. I have done it for my son and think that if you are going to have a long term relationship with someone, then you should "interview" them first. If the Dr's office won't comply, then let your fingers do the walking, IYKWIM. Also, when you call for an appointment, ask to speak with a nurse and ask if they can recommend someone right for you in that practice. I bet the nice intake nurse was cringing at the thought of you and your DH meeting the PA. I'm guessing she knows what a blowhard he is.

Well, in this particular case, it may not do much more than go on his record, but it will be heard. It was a public, sliding scale clinic (meaning they only charge what each patient can afford on a case by case basis), state funded, I believe. Complaints against those sort of places are listened to. We made the call this morning, and the woman who took it was a bit taken aback at how poorly my husband was treated.

As far as the next time goes, his PCP is going to do the legwork for us, and refer us to someone better suited to my husbands needs in particular. She's a wonderful woman, and I think she'll find someone who can help.

 

[C&G'sMama]

Saveaquarter - Glad to hear you're not stuck with this guy and that your PCP is good.

DDM - the weight thing. It doesn't bother me anymore. I use it as a point of reference because that is what defined me for so many years. From the time I was a little kid well into my 20's. (The funny thing is I weighed a heck of lot less back then). And that's what people were able to use to get to me. I still run across people with predjudice against fat people the difference is I don't care, and if you are someone in a position of authority, such as a Dr. or PA, I will report you.

 

[mechurchlady]

I am in a lot of pain and it is doubtful that I will get a scooter after spending about $300 in rentals. I tried hard to please which is a downfall. I am supposed to not walk. I showed her the knots and bruises from the latest incident.

They have not fixed the wheelchair and I desperately need it fixed or a replacement but cannot afford a new wheelchair or ECV. It is only 3 years that we have had her chair.

DLR is out of the question without and ECV or wheelchair.