Another Dominick update: Early Intervention nightmare

[Guest guest]

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

[Guest guest]

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