Re: Question for Kassi

[Guest guest]

The autism onset first. When I was 3 1/2 or so I was

diagnosed " autistic, rule out Rett Syndrome " and then

that doctor got fired. Heh. Denial is FUN! I've seen

pictures from before then and I've always been

autistic, just had fairly minor regressions and

stagnations all through early childhood(which is why

they had the RS rule out in there).

The bipolar came not long after, and no one knows how

long I've been having seizures because my parents

didn't notice them, and I started with partial

complex, which one pretty much doesn't notice. They

got really BAD in jr high/high school, and in my early

20s there've been points where I'm in double digits

for number of seizures every day.

If I didn't take meds, well, I'd die of the seizure

that never ends, but I'd also flip moods realllly

really fast. When I was very little I was like that,

then it went into a years long manic episode, followed

by a years long depression, and then back into the

super fast cycling. Lots of ragey angery stuff. I

prefer how I feel on meds than off.

--- mzdith wrote:

> Kassi,

> If this is too personal I understand if you don't

> want to answer. I

> wondered what onset first, Epilepsy, Bipolar, or

> ASD? At what age did

> your parents report the onset of each? If you don't

> take meds for the

> Bipolar, would you have a clinical depression,

> followed by a big

> " high " and productivity? Or, would you just be VERY

> moody? My Uncle,

> and Grandfather were clinically Bipolar (My poor

> Uncle spent the 60's

> in the hideous treatments of the period) and I

> wonder if Naomi's

> disregulated moods are a precursor to Bipolar

> Disorder coinciding with

> her HFA.

> Thanks,

> Judith

>

>

>

>

__________________________________________________

[Guest guest]

Kassi do you have of any baby or little girl pictures of you. Did you

to have of the light brownish yellow hair back as little girl too. For

me had of much yellow hari but by age of 4-5 or so my hair turned of

dark brown. i to had of much curly hair. the fathe rofme teached me to

pose in one position and it took him many tries to get it and caused

of me tears but once I to stayed that way long enough for the picutre

of me I to then for years did this everytime I to see of the camera. i

to ahd big fascination of the movie camera as a little girl. By age of

6 or so lost much of tight wild curly hair and it went more of

straight with mild waves. I to always had of large brown eyes. i to

just wonder what others to looked like as a little girl who are on

spectrum here. I to not be of to kow how to do real photos to make it

be of a link to pictures so others can be to see of me but do have of

a few of me around age of 4 .

Sondra

[Guest guest]

Kassi,

So, when you were a child, did your Autism present primarily as

difficulty with Sensory Processing? Did you have any language based

problems? Your motor planning must be pretty good since you are a

gymnast...The reason I'm trying to tease out the Bipolar from the

Autism, is sometimes I feel it's hard to guage exactly what drives

mood swings and difficulty with regulation.

Our Pschologist, who specializes in children with ASD, has explained

to us that Naomi's brain, when tired, hungry, or overly challenged,

has a hard time " triaging " information (auditory, visual, social) and

classifies information meant for one reaction (hey, I don't mind doing

that or being flexible for this) to another (OMG!If If I have to do

that I'm going to shut down or go totally crazy!) So, in that

instance, it looks like a mood swing. Just wondering how it feels to

you, and if you feel way more in control of your emotions and

reactions than you did when you were a little girl.

Thanks,

Judith

>

> > Kassi,

> > If this is too personal I understand if you don't

> > want to answer. I

> > wondered what onset first, Epilepsy, Bipolar, or

> > ASD? At what age did

> > your parents report the onset of each? If you don't

> > take meds for the

> > Bipolar, would you have a clinical depression,

> > followed by a big

> > " high " and productivity? Or, would you just be VERY

> > moody? My Uncle,

> > and Grandfather were clinically Bipolar (My poor

> > Uncle spent the 60's

> > in the hideous treatments of the period) and I

> > wonder if Naomi's

> > disregulated moods are a precursor to Bipolar

> > Disorder coinciding with

> > her HFA.

> > Thanks,

> > Judith

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

I do have pictures from when I was little. I put some

up on my blog, in fact, called it " photodiary of a

rettdevil " . There's one from age 1, 3, 4, 7, and then

nothing till Im in my 20s. Im not sure what happened

to the other pics...but here's a link:

http://rettdevil.blogspot.com/2006/05/photodiary-of-rettdevil.html

My hair was blonde, like, once. And it got dark again

somewhere in there. Since I was sick all summer it's

REALLY dark now. I've always had big brown eyes too,

but they started changing colors sometimes when I was

11.

Kassiane

--- sondra wrote:

> Kassi do you have of any baby or little girl

> pictures of you. Did you

> to have of the light brownish yellow hair back as

> little girl too. For

> me had of much yellow hari but by age of 4-5 or so

> my hair turned of

> dark brown. i to had of much curly hair. the fathe

> rofme teached me to

> pose in one position and it took him many tries to

> get it and caused

> of me tears but once I to stayed that way long

> enough for the picutre

> of me I to then for years did this everytime I to

> see of the camera. i

> to ahd big fascination of the movie camera as a

> little girl. By age of

> 6 or so lost much of tight wild curly hair and it

> went more of

> straight with mild waves. I to always had of large

> brown eyes. i to

> just wonder what others to looked like as a little

> girl who are on

> spectrum here. I to not be of to kow how to do real

> photos to make it

> be of a link to pictures so others can be to see of

> me but do have of

> a few of me around age of 4 .

>

> Sondra

>

>

>

>

>

__________________________________________________

[Guest guest]

--- mzdith wrote:

>

> Kassi,

> So, when you were a child, did your Autism present

> primarily as

> difficulty with Sensory Processing? Did you have any

> language based

> problems? Your motor planning must be pretty good

> since you are a

> gymnast...

Actually my motor planning is TERRIBLE, that's why I

went into gymnastics, to make it better! I distinctly

remember when I was 4, suddenly scissors were just not

usable.

I had tons of sensory issues, talked late (but not

terribly late), WOULDN'T talk, and oh did I tantrum. A

lot of that was overwhelm though. I also had Issues

with pretend play, liked doing systemic things. We had

learning centers in my preschool so this was seen as a

GOOD thing, since they didn't know about my dx. They

just thought I wouldn't fingerpaint and barely talked.

I'm also REALLY hyperlexic. Read at age 2. That's how

I learned to talk.

>The reason I'm trying to tease out the

> Bipolar from the

> Autism, is sometimes I feel it's hard to guage

> exactly what drives

> mood swings and difficulty with regulation.

> Our Pschologist, who specializes in children with

> ASD, has explained

> to us that Naomi's brain, when tired, hungry, or

> overly challenged,

> has a hard time " triaging " information (auditory,

> visual, social) and

> classifies information meant for one reaction (hey,

> I don't mind doing

> that or being flexible for this) to another (OMG!If

> If I have to do

> that I'm going to shut down or go totally crazy!)

> So, in that

> instance, it looks like a mood swing. Just wondering

> how it feels to

> you, and if you feel way more in control of your

> emotions and

> reactions than you did when you were a little girl.

I'm in more control NOW. But it's hard to tell apart

bipolar and autistic meltdowns without going to the

source. If it's sensory, it's autistic. If it's a

limit being set either by someone else or my own

ability, it's SO bipolar (once I had a major meltdown

at gymnastics because I couldn't get the hang of

twisting). If it's information frustration, it's

either or combination. The duration is also a good

clue....the bipolar ones can go on for EVER.

The mood swings I can control, at least somewhat, with

a pile of meds and supplements and lots of exercise.

The exercise I choose is good for autism too because

it meets my sensory needs. And if I'm tired or low

blood sugar it makes me cranky regardless of

medication status.

I had to really learn my needs to get what degree of

control I have (and I am considered refractory). It

was a lifetime of learning, and I'm STILL

learning-like, I learned I like my new coach better

than the old one because he makes us do drills that

involve crashing into a mat on the wall, or crashing

onto a mat on the trampoline, and I NEEED that. I

didn't know that till last week though.

I hope I at least hit on your questions, I'm fried and

I apologize for that.

Kassiane

__________________________________________________

[Guest guest]

Hi to all moms,

I really need advice or suggestions on how to handle a situation with our

school district. My 4yr. old daughter was diagnosed with mild autism in Jan.

2006. We took this information to the school district so could be

evaluated and be allowed into the PPCD program. We had an ARD in Jan. to sign

the paperwork and get the evaluation process started. did not have the

evaluation til April. During the time prior to the evaluation began

seeing a behavior therapist and a private speech therapist. After the evaluation

I asked when I would hear back from them and they stated 30-60 days out. The

autism team evaluated her in April and the school's speech therapist did an

articulation eval. in May. I asked several times when would my annual ARD take

place as well as the austim team's eval. results. No one knew anything. The

school district even contacted the doctors and therapists to help with the

process. Last Wednesday we recevied a notice in the mail tha t our Annu

al ARD would take place on Monday, May 22 at 1pm. has speech therapy

through the district as well as private speech therapy. I then immediately

emailed the speech therapist and asked about the autism eval. She had to get

back to me. She did and stated that along with the annual ARD meeting we will

also going to discussion the autism assesments along with the recommendations.

We asked to see a copy of the assessment. They did not give us a copy til Friday

at 3pm. My husband and I ,along with the therapists, went over the paperwork

and according to it she would be offered the PPCD program. Well come Monday at

the meeting they state that they just changed the recommendations a few minutes

before the meeting. They no longer offered the PPCD program but told us to put

her into a privated preschool. They told us the reason she could not get in was

because they did not see the autism in even though we have a diagnosis

and the t herapists see it . The assessement stated s

he was delayed in gross motor, adaptative behavior, language and social. So I do

not understand them. They said they could not come up with goals for her. I told

them I could right off the top of my head. They recommended a parent trainer

come to our home to see and give us advice on how to handle her. Plus

they are going to send the autism team to her therapy sessions to observe then

in August decide if she needs the program. This school district is hard to deal

with. They lied about the communication between 's private speech

therapist and them. I called them on it and they told me to have her contact

them to refute what they were telling us. She contacted them today to discuss it

and they did not want to discuss it with her at all. My husband and I did not

sign the paperwork because we were not in any agreement with them I need to

know what I should do or how you guys would handle this. I just want to get the

appropiate services for my little girl. Please feel fre

e to give any suggestions or advice. I am frustrated and why do the people in

these meetings feel the need to talk down to you. That drives me crazy. There

are other parents in the school district having the same problems. Were our

rights violated? I need help. You may email me offline if you want. Thanks for

letting me vent.

Adrienne from Texas

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-------------- Original message from Kassi :

--------------

I do have pictures from when I was little. I put some

up on my blog, in fact, called it " photodiary of a

rettdevil " . There's one from age 1, 3, 4, 7, and then

nothing till Im in my 20s. Im not sure what happened

to the other pics...but here's a link:

http://rettdevil.blogspot.com/2006/05/photodiary-of-rettdevil.html

My hair was blonde, like, once. And it got dark again

somewhere in there. Since I was sick all summer it's

REALLY dark now. I've always had big brown eyes too,

but they started changing colors sometimes when I was

11.

Kassiane

--- sondra wrote:

> Kassi do you have of any baby or little girl

> pictures of you. Did you

> to have of the light brownish yellow hair back as

> little girl too. For

> me had of much yellow hari but by age of 4-5 or so

> my hair turned of

> dark brown. i to had of much curly hair. the fathe

> rofme teached me to

> pose in one position and it took him many tries to

> get it and caused

> of me tears but once I to stayed that way long

> enough for the picutre

> of me I to then for years did this everytime I to

> see of the camera. i

> to ahd big fascination of the movie camera as a

> little girl. By age of

> 6 or so lost much of tight wild curly hair and it

> went more of

> straight with mild waves. I to always had of large

> brown eyes. i to

> just wonder what others to looked like as a little

> girl who are on

> spectrum here. I to not be of to kow how to do real

> photos to make it

> be of a link to pictures so others can be to see of

> me but do have of

> a few of me around age of 4 .

>

> Sondra

>

>

>

>

>

__________________________________________________

[Guest guest]

Kassi you were of a cute little baby and you hair did be to change

like me . i too muchhad to have hands to be touching.

Much twisting and such of the hands. i to now as adult twist of them

behind of me and into chars if sitting,

Sondra

In Autism_in_Girls , Kassi

wrote:

>

> I do have pictures from when I was little. I put some

> up on my blog, in fact, called it " photodiary of a

> rettdevil " . There's one from age 1, 3, 4, 7, and then

> nothing till Im in my 20s. Im not sure what happened

> to the other pics...but here's a link:

>

> http://rettdevil.blogspot.com/2006/05/photodiary-of-rettdevil.html

>

> My hair was blonde, like, once. And it got dark again

> somewhere in there. Since I was sick all summer it's

> REALLY dark now. I've always had big brown eyes too,

> but they started changing colors sometimes when I was

> 11.

>

> Kassiane

>

> --- sondra wrote:

>

> > Kassi do you have of any baby or little girl

> > pictures of you. Did you

> > to have of the light brownish yellow hair back as

> > little girl too. For

> > me had of much yellow hari but by age of 4-5 or so

> > my hair turned of

> > dark brown. i to had of much curly hair. the fathe

> > rofme teached me to

> > pose in one position and it took him many tries to

> > get it and caused

> > of me tears but once I to stayed that way long

> > enough for the picutre

> > of me I to then for years did this everytime I to

> > see of the camera. i

> > to ahd big fascination of the movie camera as a

> > little girl. By age of

> > 6 or so lost much of tight wild curly hair and it

> > went more of

> > straight with mild waves. I to always had of large

> > brown eyes. i to

> > just wonder what others to looked like as a little

> > girl who are on

> > spectrum here. I to not be of to kow how to do real

> > photos to make it

> > be of a link to pictures so others can be to see of

> > me but do have of

> > a few of me around age of 4 .

> >

> > Sondra

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

I like the one with the missing front teeth. Funny, my first grade pic

has a hole in my mouth, too! You were/are a pretty girl/woman!

Debi

[Guest guest]

I did the hands behind me in my teens, I didn't want

people to see them...

Thanks for saying I was a cute baby. I like to think

so, but I'm biased. I bet you were a cute kid/baby

too.

Kassiane

--- sondra wrote:

> Kassi you were of a cute little baby and you hair

> did be to change

> like me . i too muchhad to have hands to be

> touching.

> Much twisting and such of the hands. i to now as

> adult twist of them

> behind of me and into chars if sitting,

> Sondra

>

> In Autism_in_Girls , Kassi

>

> wrote:

> >

> > I do have pictures from when I was little. I put

> some

> > up on my blog, in fact, called it " photodiary of a

> > rettdevil " . There's one from age 1, 3, 4, 7, and

> then

> > nothing till Im in my 20s. Im not sure what

> happened

> > to the other pics...but here's a link:

> >

> >

>

http://rettdevil.blogspot.com/2006/05/photodiary-of-rettdevil.html

> >

> > My hair was blonde, like, once. And it got dark

> again

> > somewhere in there. Since I was sick all summer

> it's

> > REALLY dark now. I've always had big brown eyes

> too,

> > but they started changing colors sometimes when I

> was

> > 11.

> >

> > Kassiane

> >

> > --- sondra wrote:

> >

> > > Kassi do you have of any baby or little girl

> > > pictures of you. Did you

> > > to have of the light brownish yellow hair back

> as

> > > little girl too. For

> > > me had of much yellow hari but by age of 4-5 or

> so

> > > my hair turned of

> > > dark brown. i to had of much curly hair. the

> fathe

> > > rofme teached me to

> > > pose in one position and it took him many tries

> to

> > > get it and caused

> > > of me tears but once I to stayed that way long

> > > enough for the picutre

> > > of me I to then for years did this everytime I

> to

> > > see of the camera. i

> > > to ahd big fascination of the movie camera as a

> > > little girl. By age of

> > > 6 or so lost much of tight wild curly hair and

> it

> > > went more of

> > > straight with mild waves. I to always had of

> large

> > > brown eyes. i to

> > > just wonder what others to looked like as a

> little

> > > girl who are on

> > > spectrum here. I to not be of to kow how to do

> real

> > > photos to make it

> > > be of a link to pictures so others can be to see

> of

> > > me but do have of

> > > a few of me around age of 4 .

> > >

> > > Sondra

> > >

> > >

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Aww thanks.

That one is my favorite too, it was part of a series

my dad did that won some contest. And I

LOOOOOVVVVVVVVEDD my Bambi dress.

Kassiane

--- Debi wrote:

> I like the one with the missing front teeth. Funny,

> my first grade pic

> has a hole in my mouth, too! You were/are a pretty

> girl/woman!

>

> Debi

>

>

>

>

>

>

__________________________________________________

[Guest guest]

> > >

> > > > Kassi do you have of any baby or little girl

> > > > pictures of you. Did you

> > > > to have of the light brownish yellow hair back

> > as

> > > > little girl too. For

> > > > me had of much yellow hari but by age of 4-5 or

> > so

> > > > my hair turned of

> > > > dark brown. i to had of much curly hair. the

> > fathe

> > > > rofme teached me to

> > > > pose in one position and it took him many tries

> > to

> > > > get it and caused

> > > > of me tears but once I to stayed that way long

> > > > enough for the picutre

> > > > of me I to then for years did this everytime I

> > to

> > > > see of the camera. i

> > > > to ahd big fascination of the movie camera as a

> > > > little girl. By age of

> > > > 6 or so lost much of tight wild curly hair and

> > it

> > > > went more of

> > > > straight with mild waves. I to always had of

> > large

> > > > brown eyes. i to

> > > > just wonder what others to looked like as a

> > little

> > > > girl who are on

> > > > spectrum here. I to not be of to kow how to do

> > real

> > > > photos to make it

> > > > be of a link to pictures so others can be to see

> > of

> > > > me but do have of

> > > > a few of me around age of 4 .

> > > >

> > > > Sondra

> > > >

> > > >

> > > >

> > > >

> > > >

> > >

> > >

> > > __________________________________________________

> > >

[Guest guest]

sorry had tried to send long post of self as a child but somehow

lately have been seeing the yahoo things and clicking there instead of

send and been of losing the posts. not have time to redo of it but

will later.

Sondra

[Guest guest]

Kass, your website is awesome. It's nice to have a face with the emails.

Of course I loved your pictures but I also really liked your website. It's

so cool!! Good job!!!

Diane ('s Mom)

Re: Re: Question for Kassi

Aww thanks.

That one is my favorite too, it was part of a series

my dad did that won some contest. And I

LOOOOOVVVVVVVVEDD my Bambi dress.

Kassiane

--- Debi wrote:

> I like the one with the missing front teeth. Funny,

> my first grade pic

> has a hole in my mouth, too! You were/are a pretty

> girl/woman!

>

> Debi

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Thanks!

The blog is easier to keep updated than the main site,

which I'm woefully behind on...but the blog I also

don't need to pay for bandwidth on...*grins*

Kassiane

--- ds2400 wrote:

> Kass, your website is awesome. It's nice to have a

> face with the emails.

> Of course I loved your pictures but I also really

> liked your website. It's

> so cool!! Good job!!!

>

> Diane ('s Mom)

>

> Re: Re: Question for

> Kassi

>

>

> Aww thanks.

>

> That one is my favorite too, it was part of a series

> my dad did that won some contest. And I

> LOOOOOVVVVVVVVEDD my Bambi dress.

>

> Kassiane

>

> --- Debi wrote:

>

> > I like the one with the missing front teeth.

> Funny,

> > my first grade pic

> > has a hole in my mouth, too! You were/are a pretty

> > girl/woman!

> >

> > Debi

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>