Needing ideas and help on 11y old daughter

[mom2nfautism]

Hey all I know its been a while since i posted.. My life has been good at times and HELL AT times. ... lately its been hell!!!! .. NEED HELP..

My 11 y old daughter is in 6th grade 4 foot tall and 55 lb .. in Elem. school they had her behviors undercontrol and was doing good. but after she was in 5th grae last year the theacher she had would not work on the behvirs at all, no one a the school level did. so last year was very rough. This year they stated an autism class at her school adn she was placd in it for 6th grade.

This year has been rough as well. She has had major melt downs at school has broken her glasses 4 x since school started. ,pulled my watch off my arm and broke it. They have had to carry her into school several times kicking and screaming and a few times out to the car. one time about a month ago they said they had to send her home, so they ened up carring her out to my car. one teacher had one leg, one aid had one leg, one techer had an arm, a counsler had the other arm. her back and head was to the ground they caried her to my van that way. they put her into my van and she head butted me, broke my watch, hit me, the aid and the teacher got into the van with her and held her in the back seat as i drove home... the counsor followed them here and took them back to school.

my mom almost died in apirl/may , her dad has not seen her since easter and has upset her evey weekend he calls... and our family has just been in the newspapers and on the news .. my step father name is not his real name, he been living under an assumed name for over 27 years 24 that we have known him. WE HAD NO CLUE!!!! . it has hurt our family and not sure how much she understands about it.

She been complainng of her head and stomach hurting alot lately but she has not started yet, no fever.

The school has started a behvir plan.. but so far not working any ideas .

Furstrated, dealing with an sick mom, lieing step father, two with autism, adhd, neurofibromatosis, sensory intergration + others on lots of meds goes back to the pshyrist end of dec.

:eek: :confused:

[Kristen (ColeysMom)]

OMG Bea!!! I'm SO sorry all this is happening! Like this time of the year isn't stressful enough! UGH!!!

I really don't have any answers for you...I wish I did, for me and several others here too!

Coley's behavior can get pretty bad at times too, and I really am at a loss as to how to manage it!

The only thing I can tell you is what we have observed...although clearly it isn't enough to help us fully!...We have noticed that certain foods make him more aggressive and less focused more hyper, etc.

For the most part we keep the things that trigger negative behaviors out of his diet, but it's impossible to keep it out entirely, well if I want to keep any meat on him that is...

But the interesting thing here lately is that his GI is treating him for a potential over-growth issue. That's not the interesting part, this is: He prescribed Coley s.boulardii, if you are not familiar it's a 'beneficial' fungi that in non-colonizing. The idea is to 'crowd-out' the bad...along the same lines as acidopholus works on bad bacterias...anyhoo, this stuff really perked up his appetite and did great things for a couple weeks, but then suddenly he was at his all time WORST as far as behavior, aggression, and non-complience...he was basically combative ALL DAY about EVERYTHING!

We've had to take him down in dose, which is pointless now because we are seeing no good from it, no bad either, but what's the point???

ok, so this tells me that the fungi is somehow aggravating him...so now I wonder if it's not what causes his sporatic behavior issues at other times too....

Anyhoo, our next move is to try digestive enzymes, which should also help to clear the system of over-growth...I'm waiting on that, stay tuned...so that's that...

The other thing I've noticed is that Coley and meds just don't get along. That's much harder to deal with I know...but we've been able to get him Rx free, and although the process itself was hard, and even scary...it worked out for us...particularly because he is alot more 'normal' off them! We've had to manage things like seizures in other ways, likewise with sicknesses, etc. That's a HUGE challenge, but honestly it's less of a challenge (for us) than dealing with the reactions to chemicals in his system...

Soooooooo, I'm not sure if that helps at all, it's all I've got, wish it were more!

Well there is RDI, which I've been a total SLACKER on! Hopefully Mili will see this and offer something enlightening!!!

[[[[HUGS]]]]

KJ

[mc4_a]

I've found with my daughter that she is an antenna for stress. If I'm feeling stress she's feeling it four times worse. Letting her see that stress or yelling just made stuff worse. So it was a lot about controlling the way I acted.

Risperdal helped her get through a lot of it, so that's another consideration.

[peglem]

First I'd get her checked out by her physician and include a strep test. My daughter began the huge behavioral meltdowns when she had asymptomatic strep. Then, I'd start working on digestive issues. Her tummy has been hurting? How's she doing w/ bowel movements? Needing to poop is a trigger for Allie- even though she has neither constipation or diahrea. And see if yeast killer helps. She sounds really tiny for her age- maybe not getting enough nutrition? (not to say you don't feed her- sometimes kids don't absorb nutrients well). She is obviously stressed...

I would think an autism program should have more creative stategies for helping her deal with these behaviors. Dragging and punishing doesn't seem to be working. They need to know, for sure, that punishment will NOT work and will likely make things worse. I firmly believe that our kids do not want to melt down and act psychotic and anything they do to increase stress will only exacerbate the problem. They should try to find triggers so they'll know what they're dealing with. Triggers are not always external...I don't know how verbal your daughter is, but if possible, when she is calmer they should work on: when you start to feel__________ then try____________ to calm down. Have her practice the thing she will do to calm down so next time she starts to lose it, they can remind her to try the strategy for calming.

I don't know how helpful any of this is, but I sure feel for you and understand the sense of crisis you're feeling. I've been there and back many times and have the scars to prove it. So sorry your daughter and you are going through this.

[Isabelle]

poor child...is she getting her menses already ?

[moose53]

((((((Bea)))))),

I'm sorry that you've got so many things hitting you at one time :( I wish trouble would lose your address out of its PDA :rolleyes:


This year has been rough as well. She has had major melt downs at school has broken her glasses 4 x since school started. ,pulled my watch off my arm and broke it. They have had to carry her into school several times kicking and screaming and a few times out to the car. one time about a month ago they said they had to send her home, so they ended up carrying her out to my car. one teacher had one leg, one aid had one leg, one teacher had an arm, a counselor had the other arm. her back and head was to the ground they carried her to my van that way. they put her into my van and she head butted me, broke my watch, hit me, the aid and the teacher got into the van with her and held her in the back seat as i drove home... the counselor followed them here and took them back to school.


My son does not have autism. At least, I haven't been told that he has. He's grown now too. But, when he was around your child's age, he had horrible anger problems in school. If they had EVER dragged him out like that, I would have seen the exact same behavior. My husband (who had the same sorts of anger issues) said that when a lot of people are holding you back, you feel as though you can let EVERYTHING go because no one can get hurt.

I don't know if she's ever raged like that before, but, have you tried holding her or restraining gently and speaking very softly and very quietly to see if you can calm her. I really believe that total restraint like what you wrote about is going to escalate everything. She's probably in such a state of anger that she needs quietness and calmness in order to get the temperature cranked down.

I feel for you. I remember what it's like to have a kid in trouble in school and a sick Mom at home, And you've got tons more than that going on. I wish I could take it all away from you -- the bad parts, that is.

Try to treat yourself and everyone in your family well. For you, tea in pretty cups. Flowers on the table. Things to make life seem 'nicer' and 'more pleasant'.

For your daughter, try to do things with her that are going to make her feel 'part of things' and 'non-pressured' -- make some cookies together, string some popcorn for the Christmas tree, read to her, have a tea party or a cocoa party -- just try to do some things with her every day that are quiet and calming and just between the two of you.

I hope 'things' get easier for you. BIG HUGS.

Barb

[Kristen (ColeysMom)]

I've been following the replies here, and as each one comes in, I'm yelling to the screen: Ohhh that's a good one.. or Oh yeah! etc..

Bea you've got some good things to think about...I hope something helps...and I'm still waiting on Mili with her RDI speech...

But I gotta just take a minute to second Barbs suggestion...one thing that OFTEN helps with Coley when he's like this...giving him some special time.

It somehow stops the madness...it's like he's in shock from it. He knows full well my reaciton should be frustration and more, but, when I say something like wanna make cookies, or paint or whatever.....he looks like a deer in the head lights and is almost too confused to act...

Then while we are doing our thing, I can usually talk to him a little about what's going on...usually it ends with hugs & sorries.

But like others have said...the opposite reaction just adds fuel to the fire...course it's hard to control sometimes when you've reached your limit...Barb is right, don't forget yourself in all this too! Something I need to practice myself! I'll sometimes not eat or pee all day with the craziness...that doesn't make for a very patient or understanding mommy!

[peglem]

The other thing with my daughter that helps and shortens the meltdowns is letting her know that you know she's distressed, scared out of control, whatever works for her- and letting her know that you /school staff are there to help her. Try to be as understanding as possible- its called a flight or fight reaction because its like when animals are scared- backed into a corner- if they can't run they fight for their lives. Your daughter probably knows on an intellectual level that her life is not in danger, but the chemical stuff happening in her body when the meltdown comes is exactly like if her life is threatened. So, how to make her feel safe when this happens? Especially when it sends my system into high alert- I have to be so strong to not react negatively. Mostly I can these days- but it sure takes alot of practice and always remembering that she needs my help.

[milivica]

Bea I'm so sorry about all this. I have only my usual suggestion, of getting involved with a certified consultant in RDI ( www.rdiconnect.com ) which, won't help you right now. I didn't read all the above posts, but loved and agree fully with what Peglem said about not doing the old 'punishment' for behavior thing at school - just makes things worse. I mean, just once I'd love to see a behavioral plan that includes the staff not provoking the behavior. She doesn't act out for no reason. And I'm not saying the provocation is intentional either, though it could be and was I'm discovering in my son's case. Also Peg mentioned physical pain or issues that could be contributing to all of this, very good point. Geez, I haven't been here a lot lately, when the heck did Peg get so darn smart? (lol)

I just had to post, albeit with no ideas, to let you know you have my support and love and concern and prayers. I'm so darn sorry things are going like this right now.

Love,
Mili

[peglem]

I think it helps to know what's going on with our kids when they melt down- so here's a short informal (cause I don't have all the right terminology for formal) desription of how this whole melt down thing works and what goes wrong-

The fight or flight reaction, as you know is the body's defense mechanism for dealing with danger. When it gets turned on, normally by sensory information from the environment, the "survival chemicals" flood into the bloodstream. Normally, if the danger is not really present or has passed-the sensory and intellectual part of your brain (which uses the senses to continually evaluate danger and severity) triggers a shutdown of the F or F system. So, it makes sense if a person is having sensory processing dificulties then this system is not going to function properly.

Think of a time you had a "close call" likemaybe a near miss traffic accident. Remember how your heart started pounding and it took you a few minutes past the incident to really get calmed back down? The calm down came only after the sensory information came in indicating "safe" and the F&F was shut off. But, when the system is on full blast-you're reacting more than thinking.

Now for our kids the system seems to turn on very easily- maybe sensory overload confuses it, or pain (which normally triggers it anyway because its a sign of danger) coming from somewhere that the child can not even express, or something the child percieves as a threat (like not being able to complete an OCD impulse). But the shut off gets stuck because again- the sensory processing isn't working right. So, the key is to find a way to make them feel safe- trigger the shut off. They have to percieve that there is no danger for that to happen. I just wish I knew how to do that! THEN I'd be really smart!
But, knowing how the system works (or doesn't) helps me to know what NOT to do, which is anything that adds to the threat or stress.

This is something that RDI can help with (or is supposed to, i may never really find out :rolleyes: ) because if your child is able to connect with you and reference you for emotional information- your calm demeanor, your emotional state- can help them to measure danger and regulate their response.

Sorry for the possibly TMI, I've just been pondering this so much since you posted because I do feel your pain...so much want to help.

[Mother's Heart]

thank you for the info peglem. This really fits our world

[Isabelle]

[QUOTE=peglem;187653]The fight or flight reaction, as you know is the body's defense mechanism for dealing with danger.

And we were told that the best way to deal with it ("meltdowns" or "rages" ) was to extirpate his adrenal glands :eek: while all the time was part excessive use of drugs and lack of connection with some staff :( :mad:

[RathyKay]

I'm no help on this, but I did want to thank you Peg for your explanation. Especially when you throw in the sensory issues. Something to think about.