Margaret

[Guest guest]

Hi Margaret -

Yeah - I agree we all stress more about the behaviors than others

do!

>

> <<We did go to the list picnic and Liam behaved okay, but he was

so contrary

> about everything - anything Margaret and her family did to make

him

> comfortable (which

> was a lot!) he whined and told them what he didn't like about it

> ( " where's the remote? " " I don't want that movie " , etc....!!!!!)

> They were very patient, but it was a pain to try to help him

settle

> in. Sounds like a minor thing (and compared to where he was 6-12

> months ago, it is), but you feel like you are always one step from

a

> meltdown that might send you home.>>

>

> Hi, Everyone........See............. I think you felt

worse about

> his behavior than I did. I was fine with all the kids....guess it

comes from

> years of experience with Gareth and my DH always telling me " to

relax and not

> worry about what others think. " I looked at the young ones at the

picnic and

> thought " man........I was that Mom years ago!!! "

>

> <<We had him on Reg Focalin 5mg(3xday) and Risperdal 1mg(morning)

and 3mg at

> night. Within 9-10 starting this, he started having balance

issues, and

> seizure like activity.>>

>

> ......the first thing that caught my eye was the dosage of

Risperdal

> for your 8 y/O!!! I can understand 1 mg in the am but 3 mg at

night?!?!?

> Whenever Gareth gets too much of a med in his system, the

behaviors get worse.

> Too much Risperdal will cause balance issues and seizures.

Hopefully, you

> will find someone with some answers for you. Take

care, Everyone.

> Margaret

>

>

>

>

[Guest guest]

Margaret,

Did yo take Gareth to see Dr. Capone? I hear that going on meds are a lot of

trial and error. Given Dr. Capone's experience, do you think that it lessens

the guessing work? He is just so far from us...but we're willing to travel we

feel he is far more experienced than typical developmental pediatricians who may

not see but one or two ds-asd cases. What do you recommend?

mfroof@... wrote:

<<What led you to put Gareth on Risperdal? This sounds like a miracle

drug!

I want to talk to his Doctor about it at my Friday appt. -- is there

anything else you can tell me about the drug?

What was it like for you when he finally talked? It must have been the most

beautiful thing. I can't even imagine speaking to me with words.

I have had dreams that he was talking and it's like a miracle. Patty>>

Hi, Everyone.....Patty....Gareth use to talk before the autism set

in....about the same....2-4 word sentences. When he was 3-4 ish the speech tx

told us

to stop signing to him because that was 'delaying' his speech. NOW..... WE

ALL KNOW THAT AIN'T TRUE!!! It was the regression from the autism, not his

lack of 'wanting' to talk. Anyways.....that was 14 years ago and thankfully

speech tx know better now. Even after he started talking again, the growling

has always remained. Depending on the SSRI meds, it's a lot vs a little.

These days he rarely growls on the Luvox. When he does, I just growl back at

him!!! As for the Risperdal.....it was because of the head banging and

negative behaviors. He use to be considered ODD....Oppositional Defiant

Disorder.

The head banging is what scared me.....I was afraid he would end of brain

dead one day. I do consider it a gift from God.....it changed our world

completely around and for the first time in years we were able to connect with

him.

It brought him back into our world. Unfortunately, it doesn't work well on

very child. Gareth has been on it for 8 years now and except for the initial

20 # weight gain, he has had no life threatening adverse affects. If you do

go that route, start at a very low dose.....our kids can't handle meds like

normal people. The whole concept of medicating is a touching issue but when

I see how far Gareth has come (along with those from the picnic vouching for

me) then I realize I made the right decision. If you try it for several

months and it works out to 's advantage, then you can choose to remain on

the meds, If you don't like what you see, then you can take him off the

meds. Nothing states that once you start, that your child has to stay on them.

Take care, Everyone.

Margaret

[Guest guest]

Hi Margaret,

Zeb does his work without issues and has maintained good grades, in fact, on

the honor roll all year. If Zeb is treated differently than his peers issues

arise. Zeb has a para but doesn't need her to sit on top of him. He can do his

work himself but if he needs help he will initiate it. If Zeb feels he has

control of his life he feels good about himself. He is given two choices and he

does choose one successfully. If Zeb leaves the classrooom the para or sped

teacher can talk to him about what is bothering him and can resolve the issue.

Zeb does go back to the classroom. If the students in the classroom are gven a

math paper Zeb should be given one too. He is eager to do his work and will ask

for another assignment if he finishes before his peers. The problems arise, for

example, when Zeb is not given a paper with his other peers and the teacher does

not use best policy by incorporating inclusive practice or lack of independence

is not practiced by assuming he can't do

something. It's all about not singling him out and using good modifications

that meet his needs. It has nothing to do with Zeb doing what he wants too, it's

about taking ownership of him as a student and not that special ed teacher's

student. It's about recognizing when Zeb needs a break and honoring his request.

I'm on the run off to the fair.

Charlyne

Mom to Zeb 13 DS/OCD/ASD?

mfroof@... wrote:

<<how far away is PSU from you? Louise

Hi, Everyone.....Sherry....prayers coming your way. I have been thinking of

you lately. You're on the west coast of Fla., right? My DH is in Mobil

till tomorrow night....hopefully he'll get out OK.

Louise....PSU is 2 hrs away. Far enough to give independence but close

enough for Mom and Dad to visit in a day if he needs something!!!

<<Zeb's IEP contains an attachment of strategies " what works and what

doesn't " , detailed lists including transitioning from class to class, sensory

breaks, giving choices, self monitoring etc....... If you screw up with Zeb he

never forgets.....if a teacher takes away his

independence by not giving choices it's over. .......Zeb is too fat to run

but he will ignore a directive and do what he wants if he is being smothered

by adults. Zeb needs to be able to make choices and feel he has control in any

situation. If he is made to feel

differently than his typical peers he has walked out of the classroom and

refused to return. Zeb IEP states that he can call me if he has a problem.

The

staff needs to honor Zeb's requests, i.e. I need a break. >>

Charlyne.....this sounds like Zeb has total control over the teacher and not

the other way around. What happens when the teacher gives two choices and

Zeb doesn't want to do either. Does he get 2, 4 or 6 more choices? If he

walks out of the classroom because he doesn't feel wanted or feels different, is

he made to go back? Is he getting an education or are they babysitting him

by allowing him to do as he pleases? What about the 'normal' peers that don't

want to do their math sheet....they aren't given choices? I can't imagine

having an IEP written like this. Just curious.

Margaret