Re: venting/vitamins/supplements-Kris

[Guest guest]

Ruth dear,

Thank you for the kind words.

Sometimes it is difficult to write thoughts or experiences in ways that are

clear to all. That is the yuck thing about forums/internet blogs-there's no

face or expression to help convey the message.

I try to keep that in mind but end up sounding totally technical sometimes.

Other times I just hit & run with something new that has happened or that I have

learned about.

I rarely post anywhere unless it is about something I have experienced. And

only to share in case it eases another's path.

I seriously would have imploded if I had not stumbled on this list. I have

learned much here. I have found my child here in many many other voices-even

though he has not been formally diagnosed with autism. (which I have always seen

in him but did not know that there could be a dual dx)

I came to be DJ's parent with the experience of raising two typical sons to

adulthood & with 15 years of " technical " expertise in ALL areas of development

for multiple handicapping conditions.

Despite thinking I really understood what parents go through when raising a

child with disabilities, I quickly discovered I was wrong.

In spite of being professional of the year at a state level & knowing just about

every new & obscure factoid & the successful applications to employ on just

about any disability known, it did not matter.

Nothing previously experienced prepared me for the realities.

What I have learned in the past 13 years of parenting DJ is that we need the

sharing found here & other places. We need the kindness.

We need the ability to brag & have other's " get it " and be proud.

We need a safe place to vent or to trouble shoot.

We need sanctuary and we need the hope found in a stray sentence on a topic

thread.

I have found much of these things here & hope that I can " pass it on " by any of

my rambling sharing.

I am 58 years old with a just turned 15 year old who I've been mama to for 13

years. Who was born with Down Syndrome & has acquired some other medical issues

in the past few years. A being that I have had to increasingly & constantly

advocate for in the community, the school & medical arenas.

And despite my knowledge & experience base, I am still learning & still look for

that one sentence in a topic thread that either brings me peace or a " aha "

moment. Or moments of sanctuary.

Please continue to share, ask & read. There are many truths; not just one truth

that impacts.

Heart hugs,

Kris

> >

> > He doesn't drink chocolate milk.  Before the Autism, he ate good, but now

eats hardly anything.  He has never eaten fruits.  He ate mostly baby food

fruits and veggies until having his tonsils and adnoids out in April, which

he refuses to eat now.  He wants to drink alot.  He drinks milk and

watered down apple juice.  He eat (maple and brown sugar only) oatmeal,

biscuit and gravy, bean burritos, pizza, soft cookies and soft serve vanilla ice

cream. 

> >  

> >

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

38# at 4 1/2 is good. Mine was only probably 32#.

Now, he is 7 and 45 or 47#.

He jumped a big step.

> >

> > He doesn't drink chocolate milk.  Before the Autism, he ate good, but now

eats hardly anything.  He has never eaten fruits.  He ate mostly baby food

fruits and veggies until having his tonsils and adnoids out in April, which

he refuses to eat now.  He wants to drink alot.  He drinks milk and

watered down apple juice.  He eat (maple and brown sugar only) oatmeal,

biscuit and gravy, bean burritos, pizza, soft cookies and soft serve vanilla ice

cream. 

> >  

> >

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Ruth, I meant to add that in our case DJ initially had problems processing foods

as a direct result of the Down Syndrome. That is where the oro-motor training

came in.

Later, at about the 3-4 year age is when he suddenly rejected foods he had

previously accepted & eaten with no problems.

He had a self imposed very limited diet for many years & still does to a lessor

extent regarding unknowns, shapes, colors, textures, etc.

There was much hoopla & joy whenever he ate anything new. I kid you not, I am

not a fast food person, but the day my child ate a chicken nugget, I cried & was

happy.

He was in 5th grade.

But, something happened beginning in 5th grade & continues today. I have no

scientific clue as to why, but he has gradually increased his acceptance of

" new " foods in the past 4 years to the point that there's now several food

groups on his plate instead of just one.

And I no longer have to carry " his food " wherever we go (except to grandmother's

as a just in case)

Try hard not to worry. Enjoy the little boy that he is & try to remember that

he is the same little boy he was before the diagnosis. Albeit with specific

preferences at this time-just like ALL kiddos at his age.

Trust me, I have a grandchild that is typical & eats so very little & with

strong preferences. Some very weird ones at that. Sometimes I am amazed that

this child can function or has survived-but the child has for 7 years & with no

ill effects....

Heart hugs again,

Kris

>