Older Kids VS. Newer Patients

[Guest guest]

You are all missing the point here. I am referring to the parents today who

just

received diagnosis. There is a heck of a lot of INFO out there and more

publicity

about it being a medical condition.

As opposed in the early 90 " s when there was more of a lack of info. Therefore

due to this most of us Older Parents didn't find until our kid was 6, 7

or

older and it is taking 3 or even 4 times the length to make the progress

younger

kids are making.

It frustrates me to hear a " Newbie " say: " oh take notes, do this, do that,

when

in actuality we all do what's best for our kids.

So the people who found before the age of 4 should thank God because

it is by no means LUCK it is because times are better for you than a decade

ago.

I am frankly tired of waiting for Immune Modulating Agents, my kid just got

her

period and she hit puberty Big Time and I was promised that she would have

received those Immune Modulating Agents BY NOW. So, sue me if I come

across a bit arrogant, for I am sure if you were in my shoes, as MANY are you

would also, remember we aren't MASTERS OF THE UNIVERSE, WE ARE

HUMAN BEINGS in a temporary existence. And yes, some of you make this

into a darn contest and I am fed up with this group.

Good-bye

" Ms. Michele "

[Guest guest]

Michele,

As another grissled old mom of a 90s born kid now on the puberty rollar

coaster, I hear you and can certainly relate. It was harder starting back then

when the research was just taking off and there is a temptation to get upset

that

we didn't (or weren't able to) start on various treatments and therapies

sooner. Then again, I think sometimes it might be harder starting out now

because

there are sooo many different " cures of the moment " and very helpful

therapies out there to wade through and sooo much more guilt thrust on parents

if they

don't do everything.

Years ago, when my son was 5, and we were doing the Son-Rise program, I

thought how much harder, and yet how much easier, it must have been for the

Kaufmans who were dealing with autism in the 60s. Talk about hopelessness.

Then,

when I'd get frustrated with the slow progress, I also thought if no one expects

much of the kids than ANY progress was a major celebration. Now, it's still

true that any progress should be a major celebration, but as more hope

arrives, more expectations do as well which can also be extremely frustrating

for

parents who do start very early, do everything " right " and their kids still

don't

progress.

It's hard not to compare and have those moments of dispair and frustration.

We want to cheer others on but sadly other's progress often shines the

spotlight on our own kids' weaknesses. Please know there are others who do

understand and are here for you if you need an ear to vent or some support to

pick up

and move forward. Feel free to e-mail me off-list or call me if talking would

help. Sending lots of positive energy your way,

Gaylen

972-633-8244