kAIT'S FRUSTRATIONS

[barbaranoela]

We were @ Lynn's yesterday and she informed us that Kait's place in this world appears to be *no where* -- Kait has been having increased seizures over the past year---one requiring 911 and getting her to the hospital--
Lynn did not tell us cus she didnt want to burden us(not the word I want to use) and Lynn has been taking care of everything--

We do believe (cus we see) that her growth has been eaten into---of course this isnt so tragic---so she is a teeny-weensy 5 feet~~maybe not even---

The epilepsy camp she goes to---and was Counselling wasnt working out cus Kait does not know how to handle --and be in charge---and she couldnt understand why the CIT was given more authority over the campers---etc.
This past year is her last---she doesnt know this yet---but the head of the camp along with Lynn and a few other counselors discussed the inabilities and it just will not work out---
Kait forgets--etc. and this cannot be when U are in charge of younger kids also with disabilities--and the were shed but Lynn *thanked them all for allowing Kait the chance to feel important--including the *trust and faith* they all had in Kait--

Now Kristyn(cus they allowed 1 sibling to attend along with the person who has issues) has attained *Counsellor* and she will always be welcomed back----Im sure this will be a tough situation when Kait hears this---

Kait just stays in her room---bundled up---comes out every now and again--sits--says a few words then pops back to her room--

I will add to this later----have to go--

luve Barbara

[JJ]

Oh no...the camp situation is very unfortunate...Is there a chance that Kristyn could work at a differnt camp so it won't upset Kait? Is Kate able to use the computer? Is there a way she can take courses on line? Sounds like she needs something positive in her life...that's an understatement right?...hugs kiddo...JJ

[barbaranoela]

hiya Jill----

The girls have been going to this epilepsy camp,in Buffalo, for 10 years!!!
I couldnt believe it--seems like they went just yeaterday---

And do U know that it was all paid for by the Epilepsy Foundation too--
I was amazed when I heard that 1 sibling was allowed to go *free* also!!!

In answer to your Q. ---no !!if Kris still wanted to go as counsellor she would go there cus of all the friends and the attachments that she has made with all the kids that had issues--but I have to add that once Kris starts college--next year---Im sure she will have to do other things but who knows---she might want to donate 1 week outta her summer break to go and help the kids that are in need!!!

Kait was controlled when she started going---but since they started re-organizing the shunt---and screwed everything up Kait doesnt funtion too good----this is the problem~~~
Cant have someone in charge of young kids when U cant function on your own~~~~

Kait attends Community College under *special needs* student--
She does her very best to keep up---but even this might be in a questionable state!!!

Yup she uses the puter--but just as a pass time--fill in--fun--

Jill--there is so much to fill in--to totally make more sense of all that Kait has been thru---and I kinda get so angry @ her friends--who all grew up together from toddlers---and when things got worse they *ran* away from Kait--when I say she has NO friends--I mean it--
She is @ home all the time---no phone calls---no girlfriends giggeling with each other---no primping up to go out---and all that fun stuff---19 and she is like *blah*--

Well I guess I ran off a bit but gotta let it out---

I know I *ragged* about Lynn---but if it wasnt for the paths that Lynn followed to get assistance for Kait--Kait wouldnt have the assistance that she now gets--I have to say *Lynn* is amazing--as much as she can be a pain in the butt--

Okie dokie--I am off the soap opera box----
Hope U are doing well--
And thanks for your *ear* and anyone elses *ears* who might have caught up on --I think--the END of the never ending Kait saga!!!

luve Barbara

[tex]

Barbara,

It's so sad, (and so frustrating, as you say), to look back on everything that has happened over the years, and all the work, hope, aspirations and love that Kait and her family and friends have poured into her life, only to see most of the dreams shattered, because the medical system in this country has failed her miserably.

Like you, I have to give Lynn a lot of credit - she has put a tremendous amount of effort, (and a large part of her life), into doing everything she could, to help Kait, only to have the medical "experts" drop the ball, time after time.

Maybe someone will develop a revolutionary new treatment procedure, or maybe a new med will become available. She's come too far, and gone through way too much, to just sit in her room and waste away. I'm not ready to give up hope, and I hope that she's not, either. Surely, something better is waiting in the wings.



Luve,
Galahad

[JJ]

Hi Barbara...I agree with Tex...I am praying that some break-through will come along to radically improve her life... sigh....take care....JJ

[jenilake]

Me Too Barb,

I hope that something gets better for Kait!!! It seems that nothing gets better and stays that way. I have never seen anything like this. I feel so bad for all of you. Especially Kait.

Too bad they couldn't find some other job Kait could at the camp. Such an awful life, especially a teenager or young adult!!!

I will pray and send good vibes for her and all of you!!!!

Kathyp