tired, need advice

[Guest guest]

My son is now 10 month on SCD. First we had a real success; he was much calmer

than he used to be. But now we don?t see any progress, maybe because we are

used on his new behaviour.

For school I have to give him prepared plates. They are really nice there

and arrange him his special food very nicely but: every month or two, there

is new staff at school, who tell him, what he is allowed to eat and what

not and feed him with food that is not allowed. And when adult persons tell

him, what he is allowed to he can?t resist. And I can?t control, that every

new trainee is fully informed about the diet.

Now he has to go to a camp. My job is to cook in advance for a week, but

I am really not sure if this is enough. I am convinced that there will be

big mistakes in the diet.

My question ? what will happen if I stop the diet? Will he be pulled back

for a Year, or can we just have a break without consequences?

I am really tired about explaining SCDiet to people that don?t want to

understand.

Anybody has an advice?????????

Eveline, mom to Kilian 9 (ASD)

[Guest guest]

" And I can?t control, that every new trainee is fully informed

about the diet. "

Eveline,

Actually you can. You can have whatever you want written into his

IEP. You can require every new person that works with him be

trained by YOU on what he can and can't eat.

You can also have it written into his IEP that no one is allowed to

feed him anything that you have sent with him from home.

Don't let the school bully you into thinking that you have no

control over this situation. If your child had diabetes, they would

have to feed what you send and not give the child cupcakes and

the like. This is a medical problem as well.

Don't back down. If you have to, find an advocate in your area to

go with you to his IEP meetings.

As for the camp, I would tell them the exact same thing. MY

CHILD GETS VERY SICK WHEN FED THE WRONG FOODS.

DON'T FEED HIM ANYTHING UNLESS I PROVIDE IT. Give them

your contact information and tell them to feel free to call you

anytime they need to. Talk to them A LOT ahead of time and find

out of there are going to be things like popsicles and cakes, etc.

Then, make sure that you provide similar treats for your son.

If you saw progress, then the diet was helping. I think it would be

a terrible thing for you to let other people bully you into stopping

something that helped your son, no matter what it was that was

helping.

Jody

mom to -6 and -8

SCD 27 months