New to Group...finally decided to ask a question...

[Guest guest]

Hi to all,

I joined about a week ago and must admit that I have been soooo busy reading on

current and older posts that I have yet to ask the MANY questions that I have.

It is so refreshing to finally find others like our family. For so long I

searched and reached out to our local parent groups trying to get tips and

advice from other parents but finding that no one had quite the same situation

as we did.

My name is , my husband Ulysses and I have 4 BEAUTIFUL kids! Ages 13, 7,

2 and 1. Our 7 year old was born with Down Syndrome and developed quite

typically as expected for a child with Downs. Somewhere after age 4 or so, I

noticed his behaviors changing, from socializing, obsessing, stimming,

communication loss, and lack of creative play. As most of you have experienced I

found myself " lost " not knowing if I was doing enough, thinking to myself I

needed to add more therapy sessions, I needed to look at the school and see what

was happening there, and most importantly Looking at home to see if as a whole

we were not doing enough to stimulate or motivate him. As many of you had stated

in other blogs, most of his therapists stated that it was his cognitive level,

his doctor went with the ADHD route and of course I found no other parents in my

local gropus who could explain otherwise with their own experiences. We treated

for ADGD with medication but found most had side effects that outnumbered any

kind of benefits. Finally after much searching and probing he was diagnosed with

autism at age 5 1/2. It was bitter sweet. I finally had an answer but not the

one I was hoping. I am still working hard on educating myself and our family to

help him reach his potential. We love him dearly and feel with the appropriate

support we will get there.

Now, to my question....(I have MANY, so you will hear from me again, :-)

But the one really stumping me now is his eating. I have read here many of you

experiencing the same avoidance of foods that may have been at one point a

favorite. I cannot seem to understand why he refuses to eat something today but

will gladly accept it tomorrow. Right now his feedings are for sure the most

frustrating., I must admit I dread breakfast, luch and dinnertime. I feel like I

am in a guessing game that I do not know the rules of.

At this point, , will only drink milk,no juice of any kind at all! He

sips on water and thats it. As far as food, he will oNLY eat oatmeal for

breakfast sometimes he'll request that too for lunch and dinner too. Now let me

rephrase, actually doesnt request ANYTHING as he is non verbal. He is

trying to master PECS but he prefers to scream and tantrum when he does not get

what he wants. He SCREAMS like I am trying to feed him poison!!! Not only that

but if he feels that I am not understanding what in fact he wants he hits

himself in frustration/anger or I dont know why. Like I said, I cant seem to

ever win this battle because of his limited food he likes. As an example of his

limited menu, he will eat oatmeal, pasta with red sauce, SOMETIMES, rice with

gravy or a hamburger with ketsup. These are the ONLY foods I know he WILL eat,

but again on a day or meal to meal basis. I do not kno what to do. His doctor

seems to think he will outgrow this phase an that I can supplement with

Pediasure, but honestly, not only do I not think he will outgrow this but even

when I give up on him accepting to eat anything I offer him adn just give him

milk, he then in turn gets angry because he WANTS to eat, but I do not know

what.

Any suggestions????

:-(