Our appointment at Children's

[Guest guest]

Toni,

It's so hard to be blind-sided. Hang in there and know that you are not

alone.

Diane

[Guest guest]

Does anyone rememeber when Mother Theresa said " God only gives us what we

can handle. Sometimes I wish he had a little less faith in me. " That's how

I feel today.

We got down to the devleopmental clinic at Children's for our appointments

and we got started on Hope's appointment as scheduled at 8:30. We got

Faith's appointment done right after Hope's. By the time both evals were

done and my psychologist talked to me about her findings and everything it

was after 1pm. Considering with the morning traffic and construction we

left the house at 5am, that's a really long day.

As far as little Miss Faith goes, from the reports they had from the

therapists, the questions they had me answer, and what they saw, she

definately has semsory integration dysfunction. The bad part is what we and

the OT have been doing for her is about all we can do. They also want to

watch her for the next few years to see if a few other things develop or if

it's completely an age related thing. Her scores on the evaluations also

put her as ADHD, but the psychologist said it's too early for her to feel

comfortable giving that diagnosis. So she wants to see Faith in a year and

see where she is then, and then we'll see if we need to watch her some more

or what.

Now Miss Hope was another story. She was real cooperative with the

psychologist and was her typical self. So the psychologist got a good look

at how she is. From her observations, how she is at home, and what Hope's

teachers said about her, Hope now has a diagnosis of being Autistic. I didnt

think she fell onto the spectrum, but she does. Once things started being

pointed out in the office, I could see where the psychologist was seeing it.

Her lack of eye contact when you talk to her, the constant hand flapping,

toe walking, the odd times (meaning not fitting the situation) where she

tenses all up like she's excited, the near obcession she has with some

things (i.e. flipping light switches, doors must be closed at all times,

paper on crayons is either in tact or all off), the lack of language (which

also goes to her apraxia) and her use of the same sound for several

different things, at times repeatedly (i.e. ball and drink are the same " ba "

and most times it comes out " ba ba ba ba ba ba ba ba " ) Granted that's not

everything she saw or was commented on by me or Hope's teachers, but you get

the idea. The strange thing is, when I told Lane and his mom they both were

saying " oh we knew that " . They were totally expecting it once she got into

the development unit. I wasn't. I really wasn't prepared one way or

another for anything. I just figured I'd go see what they had to say and see

if there was anything else we hadn't picked up yet. Well I'd say there was.

But at least I dont have the main 2 people in my support system telling me

that the doctors are quacks or something since they were both expecting it.

Even my mom and my sister knew it was coming. My mom said her tip off was

Hope doesn't like to be hugged or touched much. Basically I'm the only one

who can hug her and touch her any time. Her dad can but only if she

initiates it.

On the plus side her neurologist and pediatrican already ran extensive blood

work on her looking for any biochemical or genetic abnormalities, she's had

a full neurological work up done recently, and she had a full check up

physically. Her ped and her neuro sent copies of Hope's files to the

developmental unit so they already had on hand what had already been looked

at. So at least we dont have to go through that whole rule out something

else route.

But of course on the downside, I'm sort of numb right now. I'm still in the

search for info mode to see what I can do for her. I must say I'm not real

comforted by some of the statistics I'm seeing either. I'm sure it'll all

hit sometime soon. But in the meantime I'm getting as much done as I can.

the girls had their baths and are watching a Strawberry Shortcake DVD right

now. Once they're asleep, then I'll have time to fall apart if I really feel

the urge.

Toni W. - BP mom to

Hope, 3, Seizure disorder, Verbal apraxia, Migraines, Autisic

and

Faith, 2, mild CP, mild Hypotonia, Asthma, Sensory Integration Dysfunction

[Guest guest]

oh toni,

I feel your saddness. know we are all here. your a strong, great mom who is

doing all she can for her children. if you need any help, I am special educator

who works with autistic children and I work in homes with the families so if you

wnat to e-mail privately please do.

chris

Toni W <mommybizz@...> wrote:

Does anyone rememeber when Mother Theresa said " God only gives us what we

can handle. Sometimes I wish he had a little less faith in me. " That's how

I feel today.

We got down to the devleopmental clinic at Children's for our appointments

and we got started on Hope's appointment as scheduled at 8:30. We got

Faith's appointment done right after Hope's. By the time both evals were

done and my psychologist talked to me about her findings and everything it

was after 1pm. Considering with the morning traffic and construction we

left the house at 5am, that's a really long day.

As far as little Miss Faith goes, from the reports they had from the

therapists, the questions they had me answer, and what they saw, she

definately has semsory integration dysfunction. The bad part is what we and

the OT have been doing for her is about all we can do. They also want to

watch her for the next few years to see if a few other things develop or if

it's completely an age related thing. Her scores on the evaluations also

put her as ADHD, but the psychologist said it's too early for her to feel

comfortable giving that diagnosis. So she wants to see Faith in a year and

see where she is then, and then we'll see if we need to watch her some more

or what.

Now Miss Hope was another story. She was real cooperative with the

psychologist and was her typical self. So the psychologist got a good look

at how she is. From her observations, how she is at home, and what Hope's

teachers said about her, Hope now has a diagnosis of being Autistic. I didnt

think she fell onto the spectrum, but she does. Once things started being

pointed out in the office, I could see where the psychologist was seeing it.

Her lack of eye contact when you talk to her, the constant hand flapping,

toe walking, the odd times (meaning not fitting the situation) where she

tenses all up like she's excited, the near obcession she has with some

things (i.e. flipping light switches, doors must be closed at all times,

paper on crayons is either in tact or all off), the lack of language (which

also goes to her apraxia) and her use of the same sound for several

different things, at times repeatedly (i.e. ball and drink are the same " ba "

and most times it comes out " ba ba ba ba ba ba ba ba " ) Granted that's not

everything she saw or was commented on by me or Hope's teachers, but you get

the idea. The strange thing is, when I told Lane and his mom they both were

saying " oh we knew that " . They were totally expecting it once she got into

the development unit. I wasn't. I really wasn't prepared one way or

another for anything. I just figured I'd go see what they had to say and see

if there was anything else we hadn't picked up yet. Well I'd say there was.

But at least I dont have the main 2 people in my support system telling me

that the doctors are quacks or something since they were both expecting it.

Even my mom and my sister knew it was coming. My mom said her tip off was

Hope doesn't like to be hugged or touched much. Basically I'm the only one

who can hug her and touch her any time. Her dad can but only if she

initiates it.

On the plus side her neurologist and pediatrican already ran extensive blood

work on her looking for any biochemical or genetic abnormalities, she's had

a full neurological work up done recently, and she had a full check up

physically. Her ped and her neuro sent copies of Hope's files to the

developmental unit so they already had on hand what had already been looked

at. So at least we dont have to go through that whole rule out something

else route.

But of course on the downside, I'm sort of numb right now. I'm still in the

search for info mode to see what I can do for her. I must say I'm not real

comforted by some of the statistics I'm seeing either. I'm sure it'll all

hit sometime soon. But in the meantime I'm getting as much done as I can.

the girls had their baths and are watching a Strawberry Shortcake DVD right

now. Once they're asleep, then I'll have time to fall apart if I really feel

the urge.

Toni W. - BP mom to

Hope, 3, Seizure disorder, Verbal apraxia, Migraines, Autisic

and

Faith, 2, mild CP, mild Hypotonia, Asthma, Sensory Integration Dysfunction

[Guest guest]

HUGS TONI............HUGE HUGE HUGS

Get her into ABA.....NOW would be good. The IU should provide that for you, and

they will come right to your house. You know I'm also in this wonderful state

of PA. If I can help you IN ANY WAY AT ALL, please let me know, and you can

call me.....ANYTIME. I've got a great friend at the Pennsylvania Education Law

Center, and if you think she can assist you I'd be happy to pass her information

on to you.

<sigh> the overlap of symptoms could surely be confusing. The hand flapping and

not wanting to be hugged COULD POSSIBLY be part of sensory integration stuff,

too.... and the " obsessions " could be OCD. Yes, it surely does put her on the

spectrum, especially at 3 years of age, but I can't help but remember SOOOOOOO

many children I've worked with, who had this very same symptomology, and once

each symptom was worked with individually, they resolved, or were quelled.

She's VERY YOUNG......and they dx'd her early, Toni.....the future is bright for

her. Please don't think anything other than that.

My prayers to you, Lane and the girls....let me know if I can help in any way at

all..

~karyn

Toni wrote:

Does anyone rememeber when Mother Theresa said " God only gives us what we

can handle. Sometimes I wish he had a little less faith in me. " That's how

I feel today.

We got down to the devleopmental clinic at Children's for our appointments

and we got started on Hope's appointment as scheduled at 8:30. We got

Faith's appointment done right after Hope's. By the time both evals were

done and my psychologist talked to me about her findings and everything it

was after 1pm. Considering with the morning traffic and construction we

left the house at 5am, that's a really long day.

As far as little Miss Faith goes, from the reports they had from the

therapists, the questions they had me answer, and what they saw, she

definately has semsory integration dysfunction. The bad part is what we and

the OT have been doing for her is about all we can do. They also want to

watch her for the next few years to see if a few other things develop or if

it's completely an age related thing. Her scores on the evaluations also

put her as ADHD, but the psychologist said it's too early for her to feel

comfortable giving that diagnosis. So she wants to see Faith in a year and

see where she is then, and then we'll see if we need to watch her some more

or what.

Now Miss Hope was another story. She was real cooperative with the

psychologist and was her typical self. So the psychologist got a good look

at how she is. From her observations, how she is at home, and what Hope's

teachers said about her, Hope now has a diagnosis of being Autistic. I didnt

think she fell onto the spectrum, but she does. Once things started being

pointed out in the office, I could see where the psychologist was seeing it.

Her lack of eye contact when you talk to her, the constant hand flapping,

toe walking, the odd times (meaning not fitting the situation) where she

tenses all up like she's excited, the near obcession she has with some

things (i.e. flipping light switches, doors must be closed at all times,

paper on crayons is either in tact or all off), the lack of language (which

also goes to her apraxia) and her use of the same sound for several

different things, at times repeatedly (i.e. ball and drink are the same " ba "

and most times it comes out " ba ba ba ba ba ba ba ba " ) Granted that's not

everything she saw or was commented on by me or Hope's teachers, but you get

the idea. The strange thing is, when I told Lane and his mom they both were

saying " oh we knew that " . They were totally expecting it once she got into

the development unit. I wasn't. I really wasn't prepared one way or

another for anything. I just figured I'd go see what they had to say and see

if there was anything else we hadn't picked up yet. Well I'd say there was.

But at least I dont have the main 2 people in my support system telling me

that the doctors are quacks or something since they were both expecting it.

Even my mom and my sister knew it was coming. My mom said her tip off was

Hope doesn't like to be hugged or touched much. Basically I'm the only one

who can hug her and touch her any time. Her dad can but only if she

initiates it.

On the plus side her neurologist and pediatrican already ran extensive blood

work on her looking for any biochemical or genetic abnormalities, she's had

a full neurological work up done recently, and she had a full check up

physically. Her ped and her neuro sent copies of Hope's files to the

developmental unit so they already had on hand what had already been looked

at. So at least we dont have to go through that whole rule out something

else route.

But of course on the downside, I'm sort of numb right now. I'm still in the

search for info mode to see what I can do for her. I must say I'm not real

comforted by some of the statistics I'm seeing either. I'm sure it'll all

hit sometime soon. But in the meantime I'm getting as much done as I can.

the girls had their baths and are watching a Strawberry Shortcake DVD right

now. Once they're asleep, then I'll have time to fall apart if I really feel

the urge.

Toni W. - BP mom to

Hope, 3, Seizure disorder, Verbal apraxia, Migraines, Autisic

and

Faith, 2, mild CP, mild Hypotonia, Asthma, Sensory Integration Dysfunction

[Guest guest]

Thanks. I have calls into the IU to get her Dx updated and to talk to the

director to see what other types of help they can provide or direct me to, I

have a call into county case management about the TSS, and a call into the

Department of Communication Disorders to set up another speech eval for Hope

since they wanted her back after she saw the psychologist. So it's been a

busy phone day after we got back from play group this morning.

Toni W. - BP mom to

Hope, 3, Seizure disorder, Verbal apraxia, Migraines, Austim

and

Faith, 2, Mild CP, Hypotonia, Asthma, Sensory Integration Dysfunction

Karyn wrote:

HUGS TONI............HUGE HUGE HUGS

Get her into ABA.....NOW would be good. The IU should provide that for

you, and they will come right to your house. You know I'm also in this

wonderful state of PA. If I can help you IN ANY WAY AT ALL, please let me

know, and you can call me.....ANYTIME. I've got a great friend at the

Pennsylvania Education Law Center, and if you think she can assist you I'd

be happy to pass her information on to you.

<sigh> the overlap of symptoms could surely be confusing. The hand

flapping and not wanting to be hugged COULD POSSIBLY be part of sensory

integration stuff, too.... and the " obsessions " could be OCD. Yes, it

surely does put her on the spectrum, especially at 3 years of age, but I

can't help but remember SOOOOOOO many children I've worked with, who had

this very same symptomology, and once each symptom was worked with

individually, they resolved, or were quelled. She's VERY YOUNG......and

they dx'd her early, Toni.....the future is bright for her. Please don't

think anything other than that.

My prayers to you, Lane and the girls....let me know if I can help in any

way at all..

~karyn