worried about the meltdowns

[Guest guest]

>>I'm listening to J., 8 years old, screaming in rage in his room.

He bites and scratches when he gets that angry and so he has to go

into time out, to protect everyone.<<

Terri,

After listening to so many people characterize our child as badly

behaved, non-compliant, spoiled etc...I came up with a little

analogy. Doris Rapp, author of Is This Your Child and others, helped

me build a clearer picture of what might be ongoing. It was very

apparent for our daughter that some things just sent her bananas - a

trip to a specialty chocolate shop years ago on vacation sent her

into a screaming tirade for no reason that had any 'people' input.

But, the smell was overwheiming and gave me a bad headache so I

can't imagine what it was doing in her seizure prone head. If our

children were responding in their respiratory systems instead of the

neurological ones, these occurances would be one heck of an asthma

attack instead of the kicking, biting, hitting, verbal abuse that we

have experienced. So I asked myself, would I 'time out' an asthma

attack as 'bad behavior?' I might be very annoyed about the outcome

ie asthma attack, and certainly try and remedy what the input was

that led to the attack. But, I would TRY not to punish for the

physical consequences of an unknown offender. Since the behavior can

be really other and self destructive, it has to be addressed in some

fashion. Barry Kauffman in his books helped with the mental part of

this also. For us, one of the remedies that Rapp suggests, alka-

seltzer gold, almost always works in 20-30 minutes to tame a

meltdown. The difficult part for me is to get it down her with love

and gentleness when that may be the very last way I feel like

responding. It has helped to just wrap my arms around her face to

face and say how bad I feel that she is feeling so awful and would

she just please drink this little bit of remedy(often 1/2 tab does

wonders). Often, I'm met with a big NO in the most foul language -

life with a few teens has taught me to ignore this!(almost) She will

usually get it down in 5 min or so, esp if I can muster the self

control to just leave it in a convenientt spot for her to take and

turn my back(literally) on things. When she comes back to our world,

I usually take the opportunity to go over things verbally. It is

amazing how often she looks at me like I'm crazy when I try to go

over what happened and talk about what would be a better response.

She just does not even recall the whole event. My vocabulary at this

point terms most of this 'bad behavior' as 'pre-seizure' akin to an

asthma attack. If not, asking about being scared - a new person at

school, a new routine, a new doctor, homework, a new pill etc has

helped because she is verbal; although before chelation, it often

took many days for her to be able to tell us what had caused

the 'bad behavior.' One year kids were continually stomping on her

feet in grade school lines - that one took weeks for her to 'tell'

because they were smart, well-liked children and she knew that.

Until she could tell us, she acted out at school and at home. These

kind of things taught me to be an unwavering advocate for her in

other settings and to convey to her the best I can, that she will

not be punished because others are teasing her. She evolved to the

point where she would say " I took it as long as I could " and my

heart broke a bit to think that she felt it was her burden to 'take

it' at all!!

She has been on tegretol for the seizures and we're slowly

withdrawing. Her seizure load is way down just from the GF/CF diet

and chelating. I would try other interventions before going that

route. B.