Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 , 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 , 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 Quote Link to comment Share on other sites More sharing options...
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