The Imperfect Community

[Rebecca_R]

Oh that makes me so mad for you what that lady did to her! It must be so hard to watch your child going through that, as parents we want to do everything to protect our kids, but the cruel world shows us we can't.

There is this lady where I've been working (one night a week) and I am always assigned to that unit. She has dementia and has a tic, where she just says "GD son of a bitch" for no apparent reason. There is this other NA there that was giving this old woman a hard time about it in the dining room. I got pissed and told the girl "you know, she can't help it, and I'm sure she's not saying anything that you don't say!" That shut the girl up.

[kathyjm]

Thanks kendra! I actually shy away from using the phrase 'mental illness'. I haven't really figured out why it bugs me but it does. I guess because there is a medical physiological cause to this and in my mind mental illness is more geared around environmental factors?? I don't know. I can't tell you how often I've had to fight with the insurance company to pay our damn bill from the neurologist because they keep saying it should be covered in our mental health plan. I always get my way but it's so irritating!

Katelynn has Tourette Syndrome (her most prevalent disorder that effects her life the most), OCD, and ADHD.

THese are all along the same 'spectrum' of the brain. Katelynn was a completely normal kid until she was about 8 1/2 so the last three years have been tough to adjust to. She see's a psychologist bi weekly for CBT and just general support. The CBT is mostly for her OCD/Anxiety components (like he got her to sleep in her own room without FEAR last year!). We treat her adhd with parenting tactics. We do try to treat her tics (TS) medicinally and that was a tough choice but we felt if we could help her quality of life then we should. She did take a med that helped for a few years but she grew tolerant to it and we maxed out how much she could take so for the last few months we've been in no man's land trying to figure out what can help her (plus puberty is playing a big role in making her symptoms worse). So she's currently taking Tenex (which hasn't really helped much) and now we're trying the one medicine which I have tried so hard to stay away from because it scares me - Risperdal. She's taking EXTREMELY low doses. I see no effect on her tics so far but it's helped her OCD a lot. Just prior to putting her on this her dangerous compulsions were getting worse...to this point she's always been able to suppress the 'urge' but she's starting to lose that battle. She squeezed a wine glass so hard that her thumb was cut very badly (you could see all the bubbly stuff under the skin layers EWWE!). So that was the clincher for us and her neuro felt risperdal would be the best med to try since it can help both tics and ocd. Jury is still out on that one though. Thankfully we haven't seen any of the negative side effects that I was so afraid of. Oh and it's also helped a lot with rage episodes (common in kid with TS for some reason though it's not part of TS).

Anyway, I think I read in one of your posts that you may have or do have BPD? My sister I KNOW has this but SHE wont admit it. It's very very sad for us because we so want her to get help and she wont :-(.

I know I have some mild form of OCD/Anxiety. I'm a hair puller and I many OCD things that I do but they're not to the point where they effect my life negatively. I believe It's more of an anxiety thing.

My OTHER sister has anxiety disorder and has panic attacks. She's the one who just had her baby and it's really taking a toll on her right now. She called me freaking out because she said she couldn't feel her arm or see out of one of her eyes (total panic attack). Then last night she was bawling because she could have died if she had her baby years ago before there were c-sections (totally irrational). So I'm going to talk my mom into talking to her doctor today about PPD or anxiety and see if they can help her a little.

Yes, so our family is no stranger to this stuff... But we're normal, I swear! I think all familys have their weird things and they just don't talk about it!

[new053105]

Kathryn - yes, your dd obvioulsy has something in her brain causing her behavior and mine is more due to a crappy childhood, which obviously your dd doesn't have.

I am not sure if I have BPD, but I did test for it on the Interent and I do have some sort of disorder...my counslor thinks it's more attachment disorder versus a personality disorder. Whatever I have is caused by trauma and I have very severe PMDD. I was on Paxil, then Zoloft and now Prozac, since it's narrowed down to severe PMDD, with probably underlying despression and anxiety. This month my PMS isn't that bad!!

Anyhow, you said your dd could outgrow some of it...so that's good. I also had ADHD when I was younger, and my mom didn't give me anything but vitamin B shots..ugh! Those hurt!! But I took an ADD test, and I don't have it anymore, so she probably will outgrow some of this.

[Petulant Pixie]

I am very sory that Katelynn has been having so much trouble at school. It is horrible and cruel.

And, I'm sure I'm going to be flamed for saying this, but...she is a living example of why values still need to be taught at school. Parents aren't doing it. It isn't fair for YOUR child to be bullied and teased for things that are beyond her control, and it isn't fair for ANY child to be bullied and teased for things beyond their control. I would really think that if anyone could see the reasoning behind trying to prevent ANY child undue suffering for their differences, it would be a parent who is wittnessing the damange intolerance has on children firsthand.

I'm sure now people are going to be pissed that I made this personal, and line up examples of how Katelynn's situation is soooo different. But, if folks fail to see the parallel, then I can't help it--it's there, clear as day.

Furthermore, I am very disappointed to read that you're singling Katelynn's condition out as seperate from "mental illness", it seems because you don't want the "mental illness" stigma attached (in so many words). Tourettes IS a mental illness, it is on Axis I, in the childhood disorders in the DSM. Many, many mentall illnesses are "organic" in nature--meaning there is a physiological cause to them. There is belief that ALL mental illness may have an organic cause, and NO mental illness would deserve the bad stigma it has been receiving forever. NAMI (National Alliance for Mental Illness) has been working to change the term "mental illness" to "Brain Illness" forever because of this. Basically, you're doing Katelynn no favors nor anyone else any favors by (incorrectly) separating her condition from "mental illness".

I can understand that you don't want your child to be responsible for educating people and removing stigmas around this condtion. But, sadly, that is the only way that change will be made.

I wish you the best of luck in your homeschooling. From what you've said, Katelynn sounds like a bright, caring, wonderful girl, and it's horrible that she's had such bad school experiences.

[Jessica]

[kathyjm]

Furthermore, I am very disappointed to read that you're singling Katelynn's condition out as seperate from "mental illness", it seems because you don't want the "mental illness" stigma attached (in so many words). Tourettes IS a mental illness, it is on Axis I, in the childhood disorders in the DSM. Many, many mentall illnesses are "organic" in nature--meaning there is a physiological cause to them. There is belief that ALL mental illness may have an organic cause, and NO mental illness would deserve the bad stigma it has been receiving forever. NAMI (National Alliance for Mental Illness) has been working to change the term "mental illness" to "Brain Illness" forever because of this. Basically, you're doing Katelynn no favors nor anyone else any favors by (incorrectly) separating her condition from "mental illness".

I appreciate your opinions on this. I will respectfully disagree with you though. the DSM (any version of it) is not the end all be all. It's a changing thing that is redefined with time and I'm sure you'll find a mulititude of things in there which are not mental illness. I haven't checked but curious, is Parkinsons considered a mental illness according to your definition? I don't believe I'm doing my daughter any disservice. I live with the discrimination every day and I see the effects. You have the luxury of knowing my daughter has TS because I've written a lot about it here, but I wonder if you were to see a kid in the store acting as the PP mentioned, would you roll your eyes and wonder to yourself why that kid is being so bad or why the mom is not 'correcting' her kid?? I also think there's a difference between not letting kids tease than there is about teaching the about gay families. My daughter has a LEGAL right to an education without fear of harassment. I don't see how that has anything to do with values.

I know we've sort of talked about this before but I have to ask (because you have such strong opinions on this) what are your qualifications to be so vocal on neurological disorders?

My reasons weren't ONLY for the bullying but that was a huge part of it. I also had trouble with the teachers following BASIC points of the 504 plan. And I can choose to fight them on it, but in the end, I still have my daughter to think about.

[Princesso]

As a teacher, I just want to say two things.

1. That people do tune out things like tics after awhile, it wouldn't be a distraction to the other kids or anything like that.

2. There is no excuse for the teacher not to leave a sub plan, that definitely should have included information about her tics and that she couldn't help them, although with confidentiality, there would be a fine line if the teacher would be allowed to tell anyone else that she has TS.

[julymom]