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

[Guest guest]

i am so sorry i am sitting here crying for you myself....i cussed the EI caseworker out and told them to get out of my house and never come back again after they kept trying to push me into saying that i used drugs and that was the reason why cameron was born with gs ...which is not ..but we wont get into that im really sorry if you need to talk im here mail me off the board or add me to messenger sassy_2680

hugz and prayers

sassy

north carolina

mommy to nick cameron katie andrew and hailey

-- Re: Another Dominick update: Early Intervention nightmare

Oh Carol,I'm so sorry to read about all of the difficulties with EI. You're a wondeful Mom and I admire you. Sending you a cyber-hug and positive thoughts your way.Jennie's MommyDOC Band Grad>> 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>

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[Guest guest]

i am so sorry i am sitting here crying for you myself....i cussed the EI caseworker out and told them to get out of my house and never come back again after they kept trying to push me into saying that i used drugs and that was the reason why cameron was born with gs ...which is not ..but we wont get into that im really sorry if you need to talk im here mail me off the board or add me to messenger sassy_2680

hugz and prayers

sassy

north carolina

mommy to nick cameron katie andrew and hailey

-- Re: Another Dominick update: Early Intervention nightmare

Oh Carol,I'm so sorry to read about all of the difficulties with EI. You're a wondeful Mom and I admire you. Sending you a cyber-hug and positive thoughts your way.Jennie's MommyDOC Band Grad>> 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>

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