Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Oh, my! I'm know going to be VERY long here. I'll apologize in advance! Who diagnosed Sierra with the Autism? Are they skilled in testing someone with hearing loss? How is her language? Does Sierra have ANY visual issues that might also impact the testing? How old is she? We just went through this with and her school assessment team. Even our Deaf School and Blind School in combination could not appropriately perform the assessment. (Deaf school couldn't do the vision assessment; Blind school couldn't communicate with her directly in ASL and had to use - we feel, a biased - Deaf school staff member.) is truly an individual with multiple-sensory impairments. That requires special training in order to test her. That was why I insisted on going to Perkins. (Oh, check out the last paragraph regarding that!) The Deaf school has wanted an Autism label on 's IEP for three years now and I refused to sign until it was removed and replaced with Deaf as primary and Other Health Impaired (CHARGE) as secondary. This year we have finally gotten the Deafblind label included on the IEP. I stated this request (deafblind) three years ago, and they wouldn't put it on there! The reason: Per her acuity, she is not legally blind. They did not count processing and other visual disturbances as vision impairment. It took a two other parties with a vested interest (Outreach Dept. at the Blind School and our LEA) to get them to finally understand acuity is not the only determining factor in vision impairment. The Deaf school's Psychologist was the one we had the most problem convincing; so I know that no visual accommodations were made during her psych testing at school! You will find a lot in the list archives about these topics (autism and/or behavior). Much is available about the behavior issues in CHARGE. Tim Hartshorne's research, as well as Brown's, is absolutely invaluable to understand that these individuals might exhibit autistic-like behaviors without actually being " autistic " . It all relates to the impaired sensory functions. (Meg also pushes this to the forefront in regards to accommodations for education- she and Tim did a " sensory " CHARGE 101 in Indiana back in late fall of 2006. Rick's and my hope was that the school would start to understand the implications of CHARGE on all the sensory systems.) Please check out the information before accepting the autism diagnosis. While some individuals with CHARGE may indeed have autism; many more have traits due to the sensory problems and how they make sense (or not) of the world around them. Getting a better handle on 's visual component has given us a much better understanding of where and why the behaviors originate. Now we just have to get the school to understand it. Had we agreed to the autism label, the modifications and adaptations would have become stagnant according to what the current teacher(s) know about autism. Several teachers at the Deaf school have specific autism training and I know they would have seen the autism label and stopped there. CHARGE is so much more than that. It is this " moreness " that makes an individual different from someone with Autism. I view it this way: It isn't a lack of vision for (she has good acuity); it's delayed processing, awareness, and responsiveness on all sensory levels that impacts her behavior, sometimes negatively. It is the difference of what is causing something, resulting in the effect; rather than one thing always being the cause of the effect. One day it might be fatigue; one day it might be visual processing of a " cluttered " page of work; another day it might be eye strain from print that isn't enlarged appropriately; another day it might be raining and her sensory processing is overloaded having to go outside to get to another classroom building. There is soooo much that our children have to adapt to and compensate for - it exhausts me to think about what a " typical " day involves for . Regarding behavior intervention plans: We had tried to implement a BIP for this past school year. We do not feel it helped. We still had to pick her up for out-of-school suspensions. And the behaviors that were trying to be intervened for were only exhibited at school. This cued us that it was due to being frustrated in her school environment. We found out they were not enlarging materials appropriately, did not allow sensory breaks prior to " explosion point " , and totally mis-read her cues. The other negative thing about signing on to a BIP was that it was written into her IEP. After that, any disciplinary actions (out of school suspensions) were not counted towards a " manifest determination " hearing. That is where after 10 suspensions, they must have a hearing to determine if the behaviors are manifest from the disability. If they are, the school cannot suspend a student for those types of infractions but must determine another manner to deal with the student behaviors. Because we put the BIP in her IEP, the manifest determination aspect no longer applies. Had we known that, we'd have never agreed to implement it as part of the IEP. Supplemental to the IEP, possibly; but not an actual part of it. The way her IEP is written, we will never have a manifest determination meeting because out-of-school suspensions are part of the progressive consequences as written in the BIP. Be very cautious where this path takes you, and how it is written and implemented. NOW, ON A SUPER HIGH NOTE: I have had the Perkins assessment report for a couple weeks now. It is fabulous! It so very much captures all that is ; all that she has to adapt to during the day; and how much it takes out of her just to function in a " normal " deaf classroom environment. It is amazing to see her captured on paper so exactly! Pam, Martha, et al - You really ARE the BEST!!! The tools that were used, the way they were used, the DIRECT (not interpreted) communication that occurred, the patience, the overall knowledge they have internalized for the assessments, and the report(s) format is truly a marvel to behold! Pam, I haven't cried yet. How can I when the report tells me so much of what I already knew, or thought I did? It simply validates what I've been telling the school for three years: They aren't addressing the core issues of what needs to become a successful learner. I suppose the big cry will probably happen during the IEP meeting this Fall. (How embarrassing!) Although, I have a feeling it may come as the result of frustration yet again - even with the reports in front of their faces. Friends in CHARGE, Marilyn Ogan Mom of (14, CHARGE+, JRA) Mom of Ken (17, Asperger's) Wife of Rick oganm@... _____ From: CHARGE [mailto:CHARGE ] On Behalf Of sierraeloisa Sent: Wednesday, June 20, 2007 2:21 PM To: CHARGE Subject: sierra Hi everyone we recently got news that sierra has autism. I am strugglling to find the right approach. I am looking for input some feedback from other parents about what type of behavioral modification intervention has worked for your children who have CHARGE and are profoundly deaf and have autism. Thank you all The kouri's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 wow but nothing would suprise me in chargeland > > Oh, my! I'm know going to be VERY long here. I'll apologize in advance! > > Who diagnosed Sierra with the Autism? Are they skilled in testing someone > with hearing loss? How is her language? Does Sierra have ANY visual issues > that might also impact the testing? How old is she? > > We just went through this with and her school assessment team. > Even > our Deaf School and Blind School in combination could not appropriately > perform the assessment. (Deaf school couldn't do the vision assessment; > Blind school couldn't communicate with her directly in ASL and had to use > - > we feel, a biased - Deaf school staff member.) is truly an > individual with multiple-sensory impairments. That requires special > training in order to test her. That was why I insisted on going to > Perkins. > (Oh, check out the last paragraph regarding that!) The Deaf school has > wanted an Autism label on 's IEP for three years now and I refused > to > sign until it was removed and replaced with Deaf as primary and Other > Health > Impaired (CHARGE) as secondary. This year we have finally gotten the > Deafblind label included on the IEP. I stated this request (deafblind) > three years ago, and they wouldn't put it on there! The reason: Per her > acuity, she is not legally blind. They did not count processing and other > visual disturbances as vision impairment. It took a two other parties with > a vested interest (Outreach Dept. at the Blind School and our LEA) to get > them to finally understand acuity is not the only determining factor in > vision impairment. The Deaf school's Psychologist was the one we had the > most problem convincing; so I know that no visual accommodations were made > during her psych testing at school! > > You will find a lot in the list archives about these topics (autism and/or > behavior). Much is available about the behavior issues in CHARGE. Tim > Hartshorne's research, as well as Brown's, is absolutely invaluable > to > understand that these individuals might exhibit autistic-like behaviors > without actually being " autistic " . It all relates to the impaired sensory > functions. (Meg also pushes this to the forefront in regards to > accommodations for education- she and Tim did a " sensory " CHARGE 101 in > Indiana back in late fall of 2006. Rick's and my hope was that the school > would start to understand the implications of CHARGE on all the sensory > systems.) Please check out the information before accepting the autism > diagnosis. While some individuals with CHARGE may indeed have autism; many > more have traits due to the sensory problems and how they make sense (or > not) of the world around them. Getting a better handle on 's visual > component has given us a much better understanding of where and why the > behaviors originate. Now we just have to get the school to understand it. > Had we agreed to the autism label, the modifications and adaptations would > have become stagnant according to what the current teacher(s) know about > autism. Several teachers at the Deaf school have specific autism training > and I know they would have seen the autism label and stopped there. CHARGE > is so much more than that. It is this " moreness " that makes an individual > different from someone with Autism. I view it this way: It isn't a lack of > vision for (she has good acuity); it's delayed processing, > awareness, and responsiveness on all sensory levels that impacts her > behavior, sometimes negatively. It is the difference of what is causing > something, resulting in the effect; rather than one thing always being the > cause of the effect. One day it might be fatigue; one day it might be > visual processing of a " cluttered " page of work; another day it might be > eye > strain from print that isn't enlarged appropriately; another day it might > be > raining and her sensory processing is overloaded having to go outside to > get > to another classroom building. There is soooo much that our children have > to adapt to and compensate for - it exhausts me to think about what a > " typical " day involves for . > > Regarding behavior intervention plans: We had tried to implement a BIP for > this past school year. We do not feel it helped. We still had to > pick her up for out-of-school suspensions. And the behaviors that were > trying to be intervened for were only exhibited at school. This cued us > that it was due to being frustrated in her school environment. We > found out they were not enlarging materials appropriately, did not allow > sensory breaks prior to " explosion point " , and totally mis-read her cues. > > The other negative thing about signing on to a BIP was that it was written > into her IEP. After that, any disciplinary actions (out of school > suspensions) were not counted towards a " manifest determination " hearing. > That is where after 10 suspensions, they must have a hearing to determine > if > the behaviors are manifest from the disability. If they are, the school > cannot suspend a student for those types of infractions but must determine > another manner to deal with the student behaviors. Because we put the BIP > in her IEP, the manifest determination aspect no longer applies. Had we > known that, we'd have never agreed to implement it as part of the IEP. > Supplemental to the IEP, possibly; but not an actual part of it. The way > her IEP is written, we will never have a manifest determination meeting > because out-of-school suspensions are part of the progressive consequences > as written in the BIP. Be very cautious where this path takes you, and how > it is written and implemented. > > NOW, ON A SUPER HIGH NOTE: I have had the Perkins assessment report for a > couple weeks now. It is fabulous! It so very much captures all that is > ; all that she has to adapt to during the day; and how much it > takes > out of her just to function in a " normal " deaf classroom environment. It > is > amazing to see her captured on paper so exactly! Pam, Martha, et al - You > really ARE the BEST!!! The tools that were used, the way they were used, > the DIRECT (not interpreted) communication that occurred, the patience, > the > overall knowledge they have internalized for the assessments, and the > report(s) format is truly a marvel to behold! > > Pam, I haven't cried yet. How can I when the report tells me so much of > what > I already knew, or thought I did? It simply validates what I've been > telling the school for three years: They aren't addressing the core issues > of what needs to become a successful learner. I suppose the big > cry > will probably happen during the IEP meeting this Fall. (How embarrassing!) > Although, I have a feeling it may come as the result of frustration yet > again - even with the reports in front of their faces. > > Friends in CHARGE, > > Marilyn Ogan > > Mom of (14, CHARGE+, JRA) > > Mom of Ken (17, Asperger's) > > Wife of Rick > > oganm@... > > _____ > > From: CHARGE [mailto: > CHARGE ] On Behalf Of > sierraeloisa > Sent: Wednesday, June 20, 2007 2:21 PM > To: CHARGE > Subject: sierra > > Hi everyone we recently got news that sierra has autism. I am > strugglling to find the right approach. I am looking for input some > feedback from other parents about what type of behavioral modification > intervention has worked for your children who have CHARGE and are > profoundly deaf and have autism. > > Thank you all The kouri's > > Quote Link to comment Share on other sites More sharing options...
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