~Re: Another Dominick update: Early Intervention nightmare/CAROL

[Guest guest]

,

Thanks! That helps alot. I am doing better this week, and have gone

into " I'll do it myself " mode. I will make myself crazy trying to

research and learn, but that's nothing new,lol.

CAROLG

> > >

> > > Hey all,

> > > I get this phone message Monday at 3:00pm from my EI caseworker

> > that

> > > says, " Just making sure you are still expecting us tomorrow at

> > > 9:30am " . OK, well I never set up an appointment so I was like

> WHAT,

> > > but figured oh well I might as well just do it. I originally

had

> > left

> > > things as I would make an appt. after Dom's surgery and after

the

> > > written report from the dev/beh ped came in. It was also

supposed

> > to

> > > be a meeting just to get to know the new case worker and let

her

> > meet

> > > Dominick.So.....

> > > I pull in the driveway Tuesday morning from taking Carly to

> school

> > > late(still not

> > > feeling great) at 9:05 and there is a car in the driveway. It

is

> > the

> > > OT and she says, I must be wrong but my book says that we were

> > > supposed to be here at 9:00. I said I wasn't even aware of this

> > and I

> > > had 9:30. At 10:00 the caseworker and the PT show up, that's

what

> > > they wrote down and to top it off it turns out this was set up

for

> > > Dominick's annual review for services. I figure I will just lay

> > down

> > > the basics of the dev. ped appt and then we'll do his

evaluation

> > and

> > > then after the report comes in we can decide what we need to do.

> > > Right off the bat the OT is very conservative again. It seems

> > > whenever she is here alone she is all " let's do this and that

and

> > he

> > > has this issue and that " and when anyone else from EI is here

she

> > is

> > > totally different and all by the book. The PT does her stuff

and

> > says

> > > Dominick is great motor wise and his funny walking is not from

> > > anything that would need PT. That is what I expected so great

one

> > > down. Well then the OT is doing the entire rest of the

evaluation.

> > > Tell me again what qualifies an OT to do developmental,

> > > cognitive,social/emotional, vision and hearing evaluations!!!!

So

> > we

> > > start the whole million questions thing and I start by saying

what

> > > happened at the dev. ped and she writes it down. Then she says

> > > something to the PT and they both look at each other and roll

> thier

> > > eyes. Then the PT says well he is young to be diagnosed as

> autistic

> > > and so I go through the whole thing about how he is not

autistic

> > but

> > > has traits and blah, blah, blah. She says I only know what I

know

> > and

> > > that is he is in great shape motor dev. wise so I will pass the

> > other

> > > issues off to the OT. I answer all the questions I can and when

> > there

> > > is an answer that requires an explanation like, " He says mama,

but

> > > also uses mama for anything emotional he wants from anyone

(picked

> > up,

> > > attention,etc), so he doesn't use it specifically " , they look

at

> > each

> > > other and roll thier frickin eyes. I was getting very

irritated.

> > The

> > > whole time the case worker is just sitting there. Imagine there

> are

> > > three of them in my little upstairs livingroom(11x11) and Dom

> stuck

> > > in the middle of them being put through one routine after

> another.

> > He

> > > gets up and comes to me and I put him on my lap,he pushes his

back

> > > against my tummy so hard and then literally takes my arms and

> wraps

> > > them around him and pushes(this means he wants me to squeeze

> him),

> > so

> > > I squeeze tighter and tighter until it is enough pressure that

he

> > > calms and then I have to hold him like that. He will do this

when

> > > upset or overloaded,it makes him feel better. They start saying

> > > things like well he has met just about all of goals(all of

> > them,lol)

> > > of drinking from a straw or sippy, and eating more table foods,

> and

> > > will go to bed without beating his head 5 out of 7 nights. This

is

> > > all he had set up by the old caseworker. I'm thinking, what are

> > they

> > > saying, he is not going to get services anymore are they crazy.

He

> > > has still not had the speech eval. I was promised and is now

> > > requested by the ped., nothing was formerly written up on his

> > sensory

> > > issues other than feeding and now he has all this stuff the

dev.

> > ped

> > > wants done. So the OT starts explaining to me how he is doing

ok

> > and

> > > that he meets the checklist for what they have. If I ask a

> question

> > > she reads from a little guideline book to answer me. I was

getting

> > > frustrated and I said what about all the other issues that are

> not

> > on

> > > your little checklist. What about the head banging and the

> walking,

> > > the fact that he is a different baby when not in his own house

and

> > > the million other things? She says well in the guidelines it

says

> > > that at the annual review we are to simply do a reveiw of his

> > > evaluation , so I didn't bring any of my tools or anything. The

> > case

> > > worker asks about where he meets the criteria for services and

> they

> > > say, well if we put down that he needs some behavoir/sensory

help

> I

> > > can probably come out every three to four months. I was so

upset

> at

> > > this point. I said to them you people don't live this baby

every

> > day

> > > and know anything about what my life is like. You don't realize

> > that

> > > my entire family has adapted thier lives to fit Dominick's

needs.

> > You

> > > aren't here when he is in his own world and you can't get

through

> > to

> > > him. You aren't there when I watch other children his age and

see

> > how

> > > absolutely different he is. I was in tears as I continued to

tell

> > > them basically how my entire life has been turned upside down

and

> > how

> > > much it hurts to know that your baby has something wrong that

may

> > > never be fixed. I told them to write up the papers and I would

> sign

> > > them, that I get it, he doesn't qualify. I picked up Dom and

> walked

> > > in the kitchen. Then they start saying well maybe if we do this

or

> > > that and I finally said, just write the papers and I will sign

to

> > > decline your services because why in God's name would I want

> people

> > > like you to be around my baby, with your eye rolling and

> > patronizing

> > > attitudes. Well the PT and the OT were in tears and they quickly

> > > write up his papers and leave but the caseworker stayed. She

sat

> > down

> > > with me and we talked while I fed Dom lunch. I said I was sorry

> but

> > > this is not fair. He doesn't fit into your paperwork guidelines

> so

> > he

> > > doesn't get services, what the hell is wrong with the system.She

> > > asked about the dev. ped and I explained, then her manner

> changed.

> > I

> > > asked if they had the AAP booklet that I have outlining the new

> > > guidelines for early detection of ASD and she said " no, I

didn't

> > even

> > > know there was one " . I showed her and she read it. The next

thing

> > she

> > > said is " I wonder how well trained the OT is in dealing with

this

> > > stuff " ........WHAT!!!! Then she said " I don't think we have

> anyone

> > on

> > > staff at all who could deal with this " ..........DUH!!!!! By the

> > time

> > > she left she said that she wrote stuff up so that if I changed

my

> > > mind and she could get something better going for Dom after

> getting

> > > the diagnosis from the dev. ped she would contact me. She said

> that

> > > she saw his walking problem and that she would send me info. on

a

> > > place to get some communication equipment to help with his

speech

> > and

> > > communication skills. Once she left I picked up the copy of the

> > > report on his development and it just made me more

upset.Remember

> > > Dominick is 18mo. He is at a 14 month old level for speech, a 15

> > > month level for fine motor skills, and he ranges between 15

months

> > > and 18 months for cognitive skills, but more towards 15 because

he

> > > has no attention span. Excuse me isn't this delayed, what is it

> > that

> > > they want to give him services???? I could go on and on about

what

> > > has been happening with Dominick over the past two months

alone,

> > like

> > > losing his words that he used to say, but I won't. I will

simply

> > say

> > > I see signs of him slipping away and noone will help me. I will

> > just

> > > have to do this on my own and I will find a way. Poor Dominick

> > spent

> > > the afternoon under his playpen mat and today he has been so

> quiet

> > I

> > > feel bad for him. Hopefully tomorrow he will feel better. Well

so

> > > that's it, I have to cry this out again now.

> > > CAROLG

> > >

> >

> >

> >

> >

> >

> >

> >

> > For more plagio info

[Guest guest]

,

Thanks! That helps alot. I am doing better this week, and have gone

into " I'll do it myself " mode. I will make myself crazy trying to

research and learn, but that's nothing new,lol.

CAROLG

> > >

> > > Hey all,

> > > I get this phone message Monday at 3:00pm from my EI caseworker

> > that

> > > says, " Just making sure you are still expecting us tomorrow at

> > > 9:30am " . OK, well I never set up an appointment so I was like

> WHAT,

> > > but figured oh well I might as well just do it. I originally

had

> > left

> > > things as I would make an appt. after Dom's surgery and after

the

> > > written report from the dev/beh ped came in. It was also

supposed

> > to

> > > be a meeting just to get to know the new case worker and let

her

> > meet

> > > Dominick.So.....

> > > I pull in the driveway Tuesday morning from taking Carly to

> school

> > > late(still not

> > > feeling great) at 9:05 and there is a car in the driveway. It

is

> > the

> > > OT and she says, I must be wrong but my book says that we were

> > > supposed to be here at 9:00. I said I wasn't even aware of this

> > and I

> > > had 9:30. At 10:00 the caseworker and the PT show up, that's

what

> > > they wrote down and to top it off it turns out this was set up

for

> > > Dominick's annual review for services. I figure I will just lay

> > down

> > > the basics of the dev. ped appt and then we'll do his

evaluation

> > and

> > > then after the report comes in we can decide what we need to do.

> > > Right off the bat the OT is very conservative again. It seems

> > > whenever she is here alone she is all " let's do this and that

and

> > he

> > > has this issue and that " and when anyone else from EI is here

she

> > is

> > > totally different and all by the book. The PT does her stuff

and

> > says

> > > Dominick is great motor wise and his funny walking is not from

> > > anything that would need PT. That is what I expected so great

one

> > > down. Well then the OT is doing the entire rest of the

evaluation.

> > > Tell me again what qualifies an OT to do developmental,

> > > cognitive,social/emotional, vision and hearing evaluations!!!!

So

> > we

> > > start the whole million questions thing and I start by saying

what

> > > happened at the dev. ped and she writes it down. Then she says

> > > something to the PT and they both look at each other and roll

> thier

> > > eyes. Then the PT says well he is young to be diagnosed as

> autistic

> > > and so I go through the whole thing about how he is not

autistic

> > but

> > > has traits and blah, blah, blah. She says I only know what I

know

> > and

> > > that is he is in great shape motor dev. wise so I will pass the

> > other

> > > issues off to the OT. I answer all the questions I can and when

> > there

> > > is an answer that requires an explanation like, " He says mama,

but

> > > also uses mama for anything emotional he wants from anyone

(picked

> > up,

> > > attention,etc), so he doesn't use it specifically " , they look

at

> > each

> > > other and roll thier frickin eyes. I was getting very

irritated.

> > The

> > > whole time the case worker is just sitting there. Imagine there

> are

> > > three of them in my little upstairs livingroom(11x11) and Dom

> stuck

> > > in the middle of them being put through one routine after

> another.

> > He

> > > gets up and comes to me and I put him on my lap,he pushes his

back

> > > against my tummy so hard and then literally takes my arms and

> wraps

> > > them around him and pushes(this means he wants me to squeeze

> him),

> > so

> > > I squeeze tighter and tighter until it is enough pressure that

he

> > > calms and then I have to hold him like that. He will do this

when

> > > upset or overloaded,it makes him feel better. They start saying

> > > things like well he has met just about all of goals(all of

> > them,lol)

> > > of drinking from a straw or sippy, and eating more table foods,

> and

> > > will go to bed without beating his head 5 out of 7 nights. This

is

> > > all he had set up by the old caseworker. I'm thinking, what are

> > they

> > > saying, he is not going to get services anymore are they crazy.

He

> > > has still not had the speech eval. I was promised and is now

> > > requested by the ped., nothing was formerly written up on his

> > sensory

> > > issues other than feeding and now he has all this stuff the

dev.

> > ped

> > > wants done. So the OT starts explaining to me how he is doing

ok

> > and

> > > that he meets the checklist for what they have. If I ask a

> question

> > > she reads from a little guideline book to answer me. I was

getting

> > > frustrated and I said what about all the other issues that are

> not

> > on

> > > your little checklist. What about the head banging and the

> walking,

> > > the fact that he is a different baby when not in his own house

and

> > > the million other things? She says well in the guidelines it

says

> > > that at the annual review we are to simply do a reveiw of his

> > > evaluation , so I didn't bring any of my tools or anything. The

> > case

> > > worker asks about where he meets the criteria for services and

> they

> > > say, well if we put down that he needs some behavoir/sensory

help

> I

> > > can probably come out every three to four months. I was so

upset

> at

> > > this point. I said to them you people don't live this baby

every

> > day

> > > and know anything about what my life is like. You don't realize

> > that

> > > my entire family has adapted thier lives to fit Dominick's

needs.

> > You

> > > aren't here when he is in his own world and you can't get

through

> > to

> > > him. You aren't there when I watch other children his age and

see

> > how

> > > absolutely different he is. I was in tears as I continued to

tell

> > > them basically how my entire life has been turned upside down

and

> > how

> > > much it hurts to know that your baby has something wrong that

may

> > > never be fixed. I told them to write up the papers and I would

> sign

> > > them, that I get it, he doesn't qualify. I picked up Dom and

> walked

> > > in the kitchen. Then they start saying well maybe if we do this

or

> > > that and I finally said, just write the papers and I will sign

to

> > > decline your services because why in God's name would I want

> people

> > > like you to be around my baby, with your eye rolling and

> > patronizing

> > > attitudes. Well the PT and the OT were in tears and they quickly

> > > write up his papers and leave but the caseworker stayed. She

sat

> > down

> > > with me and we talked while I fed Dom lunch. I said I was sorry

> but

> > > this is not fair. He doesn't fit into your paperwork guidelines

> so

> > he

> > > doesn't get services, what the hell is wrong with the system.She

> > > asked about the dev. ped and I explained, then her manner

> changed.

> > I

> > > asked if they had the AAP booklet that I have outlining the new

> > > guidelines for early detection of ASD and she said " no, I

didn't

> > even

> > > know there was one " . I showed her and she read it. The next

thing

> > she

> > > said is " I wonder how well trained the OT is in dealing with

this

> > > stuff " ........WHAT!!!! Then she said " I don't think we have

> anyone

> > on

> > > staff at all who could deal with this " ..........DUH!!!!! By the

> > time

> > > she left she said that she wrote stuff up so that if I changed

my

> > > mind and she could get something better going for Dom after

> getting

> > > the diagnosis from the dev. ped she would contact me. She said

> that

> > > she saw his walking problem and that she would send me info. on

a

> > > place to get some communication equipment to help with his

speech

> > and

> > > communication skills. Once she left I picked up the copy of the

> > > report on his development and it just made me more

upset.Remember

> > > Dominick is 18mo. He is at a 14 month old level for speech, a 15

> > > month level for fine motor skills, and he ranges between 15

months

> > > and 18 months for cognitive skills, but more towards 15 because

he

> > > has no attention span. Excuse me isn't this delayed, what is it

> > that

> > > they want to give him services???? I could go on and on about

what

> > > has been happening with Dominick over the past two months

alone,

> > like

> > > losing his words that he used to say, but I won't. I will

simply

> > say

> > > I see signs of him slipping away and noone will help me. I will

> > just

> > > have to do this on my own and I will find a way. Poor Dominick

> > spent

> > > the afternoon under his playpen mat and today he has been so

> quiet

> > I

> > > feel bad for him. Hopefully tomorrow he will feel better. Well

so

> > > that's it, I have to cry this out again now.

> > > CAROLG

> > >

> >

> >

> >

> >

> >

> >

> >

> > For more plagio info