Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 << need to vent a little. Hope you guys don't mind. =(>> I for one don't mind at all. This is what's going on with too the past few weeks and it's driving me nuts. I'm feeling for ya! Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 Hi Liz, I share your frustration. Zeb has not had the best week at school. Did the school show you the behavior data sheets? It may give you a better look as to what she is doing, times etc during what activites to help you with answers to work out a solution. It's not always meds. Charlyne Mom to Zeb 13 DS/OCD/ASD? Liz D wrote: I need to vent a little. Hope you guys don't mind. =( I received a call today from the school nurse at Tori's school. Apparently, her behaviors have increased to a point where people are really noticing them. I stopped by there after work, and spoke with her T/A and the IU coordinator. She has become more aggressive, and is doing ALOT of stop-drop-flop. Is also becoming more non-compliant. What the heck??? They said they have seen the changes happening over the past few weeks, this week only getting more intense. I first thought it was because of the 1/2 days, and time off for Turkey Day, but they said this started about 2 weeks prior. I just emailed her Dev. Ped.-don't know what to do. Liz " Success manifests in small daily events, not only in accomplishing great things " - Remez Sasson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 Hi Liz, I share your frustration. Zeb has not had the best week at school. Did the school show you the behavior data sheets? It may give you a better look as to what she is doing, times etc during what activites to help you with answers to work out a solution. It's not always meds. Charlyne Mom to Zeb 13 DS/OCD/ASD? Liz D wrote: I need to vent a little. Hope you guys don't mind. =( I received a call today from the school nurse at Tori's school. Apparently, her behaviors have increased to a point where people are really noticing them. I stopped by there after work, and spoke with her T/A and the IU coordinator. She has become more aggressive, and is doing ALOT of stop-drop-flop. Is also becoming more non-compliant. What the heck??? They said they have seen the changes happening over the past few weeks, this week only getting more intense. I first thought it was because of the 1/2 days, and time off for Turkey Day, but they said this started about 2 weeks prior. I just emailed her Dev. Ped.-don't know what to do. Liz " Success manifests in small daily events, not only in accomplishing great things " - Remez Sasson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 Hi Everyone, Not meaning to sound dumb, but what is a behavior data sheet? I can't get Janie's teacher to communicate with me about her behavior. She claims she can only record her aggressive behaviors for a 10 minute time period each day. I never get the 10 minute reports even. It is really important to know what her behavior is doing while we are trying new meds to find out if they have a positive effect or not. Her behavior at home doesn't tell much because the aggression comes out much more around her peers. Any suggetions where I start getting the feedback I need so I can pass it on to the docs? Also, I am really unhappy with the whole classroom setup because Janie does not have a one-on-one aide and I really believe she would learn better with someone who could draw her out. I haven't even been able to find out if she is getting OT and she isn't able to hold a pencil right so how can she write? I can get a referral for OT elsewhere, but she should be getting some at school. Her K-1st grade teacher was so helpful I am really distressed about this year's situation. Our district has different schools designated for different grades for high needs classes. Can I make the district pay for a different school? Who would I contact about this? Sorry to whine. You all have such good ideas and experiences to share. Thanks! P. (Mom of Janie 7 DS/PDD-NOS/ADHD and Katelyn 10 ADHD/ODD) > I need to vent a little. Hope you guys don't mind. =( > > I received a call today from the school nurse at Tori's school. Apparently, her behaviors have increased to a point where people are really noticing them. I stopped by there after work, and spoke with her T/A and the IU coordinator. She has become more aggressive, and is doing ALOT of stop-drop-flop. Is also becoming more non-compliant. What the heck??? They said they have seen the changes happening over the past few weeks, this week only getting more intense. I first thought it was because of the 1/2 days, and time off for Turkey Day, but they said this started about 2 weeks prior. I just emailed her Dev. Ped.-don't know what to do. > > Liz > > " Success manifests in small daily events, not only in accomplishing great things " - Remez Sasson > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 vent away!! we are all here for you!! I know how you feel!!! nicholas was hospitalized again, thankfully for only 3days this time, DH and nathan both spent a day puking, and i had to miss more work, christmas is looking pretty thin around here , at least my boys seem to understand and are more than happy to receive evne only 1 gift, but they will each get around 3-5. dvd's are inexspensive and using DH's bonus for the more expsensive gifts, they each get one. shawna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 In a message dated 12/1/2006 11:58:22 A.M. Eastern Standard Time, absull@... writes: Many Drs and professionals do not want to see a child who has Down syndrome as a " dually diagnosed " child. Our geneticist doesn't seem to have an issue with this. Obviously genetic tests confirmed what we know re: Down's Syndrome but he was the one who put Fetal Alcohol Syndrome down on paper for us. From what I understand, from others, is so difficult to get DR's to confirm that diagnosis. We recently went to see him and now he has said he sees autistic tendencies in her. He put it under the umbrella of Pervasive Developmental Spectrum Disorder. Blessings, W in CT homeschooling mom to AJ (12), (8), ^l^, (just turned 5, Trisomy 18 mosaic aka syndrome) and Birgitta (age 3, adoption finalized 2/1/05 !!, Trisomy 21 aka Down's Syndrome, Fetal Alcohol Syndrome, SID, PDSD ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 Hi all I need to express my frusturation. I feel lost right now and I know that some of you can give me some good advice. Has anyone ever heard of Dr. McGreevy, Certified Behavior Analyst? He is out of Orlando. Well he came into my daughters classroom yesterday to observe all the students and to give the teachers some insight. I was told by her teacher that Dr. McGreevy does not see Autism in Haylee! Im not saying I want my child to be Autistic, I just want a proper diagnosis so that we can have " closure " . My daughter does not do the things that other Downs children do. I see more Autistic behavior. She is so low functioning also. My daughters ABA therapist have actually gone to Dr. McGreevys seminars and they see Autism in Haylee. My daughter was diagnosed with this last April by a Dr. Hagerott, Ph.D, LIcensed Psychologist, Clinical Neuropsychologist in Pensacola. I felt this woman really knew her stuff so I called her office to let them know whats going on and to see what she had to say. I really dont think she would remember Haylee but I just had to call. I guess I was hoping that this Dr. McGreevy would confirm this also, I heard lots of great things about him. What do you all think? Her teacher keeps telling me to get involved with a Downs Support Group, but I actually know a few people that have Downs children and they are nothing like Haylee, they are doing so much more. Thanks for your time Re: Here we go again... vent away!! we are all here for you!! I know how you feel!!! nicholas was hospitalized again, thankfully for only 3days this time, DH and nathan both spent a day puking, and i had to miss more work, christmas is looking pretty thin around here , at least my boys seem to understand and are more than happy to receive evne only 1 gift, but they will each get around 3-5. dvd's are inexspensive and using DH's bonus for the more expsensive gifts, they each get one. shawna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 In my experience kids who have Down syndrome are usually diagnosed much later. In my own daughters case, it was at 13 years of age. I knew that she was on the spectrum at around 3....it took that long to get someone to agree with me. I didn't push that hard until I felt she needed additional services.Many Drs and professionals do not want to see a child who has Down syndrome as a " dually diagnosed " child. Don't let them " push you around " , you know your child better than anyone. They can't " write off " the original Doctor's official diagnosis.. good luck. Brigid Re: Here we go again... vent away!! we are all here for you!! I know how you feel!!! nicholas was hospitalized again, thankfully for only 3days this time, DH and nathan both spent a day puking, and i had to miss more work, christmas is looking pretty thin around here , at least my boys seem to understand and are more than happy to receive evne only 1 gift, but they will each get around 3-5. dvd's are inexspensive and using DH's bonus for the more expsensive gifts, they each get one. shawna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 Well Haylee turned Five in August, I didnt suspect anything until about 4yrs. I just thought she was really, really slow and would eventually catch on, maybe shes just really low functioning. Who knows, its all frusturating and it doesnt really get to me until someone outside the family starts questioning it. Thanks for your time. Re: Here we go again... vent away!! we are all here for you!! I know how you feel!!! nicholas was hospitalized again, thankfully for only 3days this time, DH and nathan both spent a day puking, and i had to miss more work, christmas is looking pretty thin around here , at least my boys seem to understand and are more than happy to receive evne only 1 gift, but they will each get around 3-5. dvd's are inexspensive and using DH's bonus for the more expsensive gifts, they each get one. shawna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 , I don’t know about Dr McGreevy. Did you get a feel if the school was going to change anything they were currently doing since you already have the autism diagnosis from a psychologist? If nothing is changing and Haylee’s ABA therapists are working with her on what she needs from recommendations of the psychologist, who gave her the autism diagnosis, I wouldn’t be as concerned by Dr G’s comments. Remember he only saw her for a short time. I think that was a good idea for you to contact the psychologist that did test her, to get her input. Keep in mind if there are any comments from the school about changing anything you can ask Haylee’s doctor to write a note to the school to impress on them the need to follow her recommendations. We went through a similar situation when was diagnosed with autism three years ago at age 41. I chose a psychologist I had worked with and knew was considered a good diagnostician, who signed and understood deafness. Within a month of observing him he began to question if anyone had ever mentioned that had autism. After additional observations at his home and vocational program where he talked with his staff at both places and did testing with he did give the autism diagnosis. Then other medical doctors did not agree with the diagnosis but did agree with the recommendations. At that time we arranged for to have an evaluation with a clinician whose expertise was in deafness and autism. She agreed with the psychologist. So we decided it didn’t matter what we called it if all agreed this is how responded to others and his environment and these are the strategies to use to help him that is what we would do. For being an adult the strategies were the most important. For you though having to deal with the school district you have the diagnosis and that should be sufficient to get the services Haylee requires. From listening over the years to what others on the list have said and what they had to go through with the school districts that is not always the case. No matter if a child and in school or an adult with adult services we always have to vigilant to advocate for the services they need. Hang in there, take a deep breath, and tomorrow will be another day. Louise, Mom to 44, DS, Deaf, ASD in IL Re: Here we go again... Hi all I need to express my frusturation. I feel lost right now and I know that some of you can give me some good advice. Has anyone ever heard of Dr. McGreevy, Certified Behavior Analyst? He is out of Orlando. Well he came into my daughters classroom yesterday to observe all the students and to give the teachers some insight. I was told by her teacher that Dr. McGreevy does not see Autism in Haylee! Im not saying I want my child to be Autistic, I just want a proper diagnosis so that we can have " closure " . My daughter does not do the things that other Downs children do. I see more Autistic behavior. She is so low functioning also. My daughters ABA therapist have actually gone to Dr. McGreevys seminars and they see Autism in Haylee. My daughter was diagnosed with this last April by a Dr. Hagerott, Ph.D, LIcensed Psychologist, Clinical Neuropsychologist in Pensacola. I felt this woman really knew her stuff so I called her office to let them know whats going on and to see what she had to say. I really dont think she would remember Haylee but I just had to call. I guess I was hoping that this Dr. McGreevy would confirm this also, I heard lots of great things about him. What do you all think? Her teacher keeps telling me to get involved with a Downs Support Group, but I actually know a few people that have Downs children and they are nothing like Haylee, they are doing so much more. Thanks for your time -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.430 / Virus Database: 268.15.3/562 - Release Date: 12/1/2006 1:12 PM -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.430 / Virus Database: 268.15.3/562 - Release Date: 12/1/2006 1:12 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 Hi all-- I agree with you, Charlyne, if behaviors are increasing it would be helpful to know WHAT is happening before (antecedent) and what is coming after (consequence) the behaviors. If the school or district has a Behavior Specialist then that would be the person to talk to about setting up a Functional Analysis Assessment (the assessment that comes before a behavior plan is set up). It really helps to put your requests in writing and submit them to the special ed. director. If a behavior plan is already in place then the teacher should know how to collect the data needed. If she doesn't then she/he should go back to the person who helped set up the behavior plan in the first place for direction. BUT I agree, it is SO frustrating when you are only told of their frustrations after several weeks. It makes you feel like you should have known, like a bad mom. None of us are bad moms. We care deeply and look high and low for help with our special little (or not so little) ones. BUT we can only rely on the information we are given. If they don't tell you that's THEIR fault, not yours. And it will take about as much time to address the issue as it would have if they had told you at the onset of the problem instead of waiting until they were frustrated. , is OT in Janie's IEP? If not, you need to ask for an OT assesment, again in writing. If OT is in her IEP then the school is in non-compliance and you are within your rights to file a compliance complaint with the state. Help yourself to ask for information in wrting with a copy sent to the sp.ed. dir. and to yourself, so you can prove when you asked if you need to. You can certainly ask that reporting practices be included in the IEP, exactly how you want them to report to you and how frequently. Even if they don't have data collection sheets you can request in writing, with a copy to the sped. dir., that they write down the behavior they are concerned about (observations-not speculation about what the child is thinking), what time of day it occurred, what was happening before it occurred and with whom, what happened after it occurred, how many times the behavior occurred (frequency), how long the behavior lasted (duration) and what seemed to reason for the behavior (escape, attention, etc.). This is the information a behavior specialist needs to analyze the behaviors. It will also give you a pro-active way to take charge of the situation and lead your child's classroom teacher/aides to a positive solution. Of course, everyone wants the behavior fixed NOW, but that's unrealistic. - Another thought: If Dr. McGreevy is a Board Certified Behavior Analyst,what is he doing diagnosing or making comments like that about your child? Sounds pretty irresponsible to me. Use a good old behavior modification technique on him: planned ignoring - just ignore him. Unless, of course, it makes any difference in the services your child receives, then I might print out Glen Vatter's " diagnosis of autism in children with down syndrome " and go and hand it to him and ask him to read it before you address this issue at a later time with him. Just know that you are not going to change every doctors previous prejudices against certain diagnoses. You already have a diagnosis with the other doctor - you can't nullify that. One diagnosis doesn't somehow " trump " another in this instance. Don't let the school back you into doing their job for them - it is their responsibility to let you know what is happening, what needs to happen for your child to participate in their class. Ask them, " What do you want to do about this situation? " and put it back into their court. If you agree with what they plan, then encourage them. If you don't agree, let them know they need to come up with a better plan. You are PART of the team. Make them do their jobs or make them ask for help from their higher ups. Just monitor their progress. Thanks for all the support YOU give ME! Hugs- Donnell (mom to DJ-age 11) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 Thanks Louise! I dont think anything will change as far as how everyone is working with Haylee and meeting her needs. It doesnt change anything, I just dont like the fact that one person says one thing and I feel like now her teacher doesnt think Haylee has Autism. As long as Haylee is taught the best way that she can handle then there is no problem. Its just hard to deal with people doubting what you believe is the case with your own child. Thanks again. Re: Here we go again... Hi all I need to express my frusturation. I feel lost right now and I know that some of you can give me some good advice. Has anyone ever heard of Dr. McGreevy, Certified Behavior Analyst? He is out of Orlando. Well he came into my daughters classroom yesterday to observe all the students and to give the teachers some insight. I was told by her teacher that Dr. McGreevy does not see Autism in Haylee! Im not saying I want my child to be Autistic, I just want a proper diagnosis so that we can have " closure " . My daughter does not do the things that other Downs children do. I see more Autistic behavior. She is so low functioning also. My daughters ABA therapist have actually gone to Dr. McGreevys seminars and they see Autism in Haylee. My daughter was diagnosed with this last April by a Dr. Hagerott, Ph.D, LIcensed Psychologist, Clinical Neuropsychologist in Pensacola. I felt this woman really knew her stuff so I called her office to let them know whats going on and to see what she had to say. I really dont think she would remember Haylee but I just had to call. I guess I was hoping that this Dr. McGreevy would confirm this also, I heard lots of great things about him. What do you all think? Her teacher keeps telling me to get involved with a Downs Support Group, but I actually know a few people that have Downs children and they are nothing like Haylee, they are doing so much more. Thanks for your time -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.430 / Virus Database: 268.15.3/562 - Release Date: 12/1/2006 1:12 PM -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.430 / Virus Database: 268.15.3/562 - Release Date: 12/1/2006 1:12 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 We are also seeing a great increase in behaviors over the last month. Wonder if it is the weird weaather with strange barometric drops?? PA and GA and Maine and NY and Mich - to name a few I have heard about have had very unseasonable weather with different barometer readings. I am beginning to think about a new psych eval if things aren't better before the Xmas break. Sara - Choose to make lemonade, not complain about the lemons. > >Reply-To: >To: < > >Subject: Here we go again... >Date: Thu, 30 Nov 2006 16:12:53 -0500 > >I need to vent a little. Hope you guys don't mind. =( > >I received a call today from the school nurse at Tori's school. >Apparently, her behaviors have increased to a point where people are really >noticing them. I stopped by there after work, and spoke with her T/A and >the IU coordinator. She has become more aggressive, and is doing ALOT of >stop-drop-flop. Is also becoming more non-compliant. What the heck??? >They said they have seen the changes happening over the past few weeks, >this week only getting more intense. I first thought it was because of the >1/2 days, and time off for Turkey Day, but they said this started about 2 >weeks prior. I just emailed her Dev. Ped.-don't know what to do. > >Liz > > " Success manifests in small daily events, not only in accomplishing great >things " - Remez Sasson > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2006 Report Share Posted December 2, 2006 I find it hard to get a " firm " dx as well. had her IEP Tuesday this week and 1/2 of the people there, her ABA therapist came too, thought she had the dual dx and the other 1/2, OT and ST thought she did not have it. Their reasoning is that she is not testable. Another psych told us this as well. BUT, an Autism clinic told us she was. We have an appt Dec 18th with a neuro in hopes of clearing this up. I would think that if the group you saw has said she's autistic, I'd stay with that. Is it written into her IEP? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2006 Report Share Posted December 3, 2006 Re: Here we go again... I find it hard to get a " firm " dx as well. had her IEP Tuesday this week and 1/2 of the people there, her ABA therapist came too, thought she had the dual dx and the other 1/2, OT and ST thought she did not have it. Their reasoning is that she is not testable. Another psych told us this as well. BUT, an Autism clinic told us she was. We have an appt Dec 18th with a neuro in hopes of clearing this up. I would think that if the group you saw has said she's autistic, I'd stay with that. Is it written into her IEP? ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.409 / Virus Database: 268.15.6/565 - Release Date: 12/2/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2006 Report Share Posted December 3, 2006 , We first started out with the " tendencies " statement. As Jake got older, the tendencies became more noticeable (he was not growing out of it), and after he started school, etc the psychologist went with writing down his " quirks " and then the next eval, he gave us the PDD diagnosis. I had had such a hard time with schools not believing that he could be autistic that we went the route of having Autism Center at Kennedy Krieger do he eval and now we feel very confident when anyone questions. However Jake is now 7 1/2 and our official (as I call it) diagnosis didn't come until about a year and a half ago. I know you want to know for sure now, but the psychologist have all told us that it just gets more obvious as they kids grow up and have the chance to learn and expand themselves. That is why they say it is easier to diagnosis when the kids get a little older. Just my two cents. Holly Re: Here we go again... In a message dated 12/1/2006 11:58:22 A.M. Eastern Standard Time, absull@... writes: Many Drs and professionals do not want to see a child who has Down syndrome as a " dually diagnosed " child. Our geneticist doesn't seem to have an issue with this. Obviously genetic tests confirmed what we know re: Down's Syndrome but he was the one who put Fetal Alcohol Syndrome down on paper for us. From what I understand, from others, is so difficult to get DR's to confirm that diagnosis. We recently went to see him and now he has said he sees autistic tendencies in her. He put it under the umbrella of Pervasive Developmental Spectrum Disorder. Blessings, W in CT homeschooling mom to AJ (12), (8), ^l^, (just turned 5, Trisomy 18 mosaic aka syndrome) and Birgitta (age 3, adoption finalized 2/1/05 !!, Trisomy 21 aka Down's Syndrome, Fetal Alcohol Syndrome, SID, PDSD ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2006 Report Share Posted December 3, 2006 I can't believe that even an expert can diagnosis after just a little observation in a classroom. We went through OT, OT and speech evals that lasted 2 hours with lots of communications between us and the evaluator. Then we met with the big wig and with all this information they agreed with a PDDdiagnosis. I think it is irresponsible for him to even voice his option with out all the facts in hand. Again, just my two cents. Holly Re: Here we go again... vent away!! we are all here for you!! I know how you feel!!! nicholas was hospitalized again, thankfully for only 3days this time, DH and nathan both spent a day puking, and i had to miss more work, christmas is looking pretty thin around here , at least my boys seem to understand and are more than happy to receive evne only 1 gift, but they will each get around 3-5. dvd's are inexspensive and using DH's bonus for the more expsensive gifts, they each get one. shawna Quote Link to comment Share on other sites More sharing options...
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