Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 Oh, my. Your comment about not sharing information with the school nurse raised a red flag for me. I, too, have known a few parents who would not or could not move forward, but I've also experienced truly meddlesome school personnel. Your report does not suggest that that is a problem, but take a long look at how school staff has been on the issue. Our daughter once had a drug resistant infection. School staff, without our knowledge, called her ENT - the apparent theory was that we were in denial. Not true! The meds just didn't work. Perhaps there are issues here that aren't being explored. (I grant you that what we went through doesn't seem to be the case here, but it was so dreadful that I have to mention it). Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 I was told that retardation is " the inability to learn anymore " , lf you look in the dictionary this is what it also says. CHARGE children have the ability to continue to learn and we dont know how far they can go. at 7 years old to say a CHARGE child has severe mental retardation upsets me. My daughter is almost 7 and she is learning SO much everyday. Dont give up on this child. It is nice to hear this teacher is seeking advise. Just my input! cathie, mo to erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 I was told that retardation is " the inability to learn anymore " , lf you look in the dictionary this is what it also says. CHARGE children have the ability to continue to learn and we dont know how far they can go. at 7 years old to say a CHARGE child has severe mental retardation upsets me. My daughter is almost 7 and she is learning SO much everyday. Dont give up on this child. It is nice to hear this teacher is seeking advise. Just my input! cathie, mo to erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 I was told that retardation is " the inability to learn anymore " , lf you look in the dictionary this is what it also says. CHARGE children have the ability to continue to learn and we dont know how far they can go. at 7 years old to say a CHARGE child has severe mental retardation upsets me. My daughter is almost 7 and she is learning SO much everyday. Dont give up on this child. It is nice to hear this teacher is seeking advise. Just my input! cathie, mo to erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 Your reply leads me to some other thoughts about your student. First, the discussion of mental retardation is a complex one. If we describe a person who does not talk, can not express themself without remarkable technology, can not walk, can not swallow, can not toilet independently, etc. we could be describing a person with a genius IQ such as Hawking. Certain factors prevent certain functions, but those factors are not an insufficient IQ. I believe this is true of many children with CHARGE. I think perceptions about supposed IQ in children with CHARGE has done nothing historically but limit options and close off services in most cases. And, I also believe that a person can be or can become functionally retarded when they are not in essence so. Next, I had an idea when you mentioned the student does not discriminate pictures on PECS very well. First, the child may have very significant functional vision problems in addition to the actual documented vision loss. There are lots and lots of wonderful experts on these issues that might even include cortical blindness on this list. Some of those experts, but this is not a complete list, include DB Link, Ann Gloyn, Kim Lauger, Brown, Jackie Kenley and many others. I attended a PECS workshop last year and asked about substituting concrete objects for the pictures or symbols. The developers of PECS had some limited success using this approach with PECS with individuals with multi-sensory involvement, particularly deafblindness. It could be worth trying in case it is a method that opens up some interaction and communication for the student. My daughter, who does well reading, responded very favorably early on to using objects to express wants. She took the keys to express a desire to go out in the car and picked up a miniature book to indicate an interest in going to the library and so on. It was very tactily accessible information to her. A PECS system to work effectively needs to follow the established protocol in insuring progress in communication. If followed, a significant number, somewhere around 75% of individuals, will be able to move to more traditional forms of formal communication. I would think that the school nurse could express concern to the parent about any medical issues. It's hard to comment specifically because I don't know the student and I don't know the parent. However, a lack of team work came across pretty strongly to me and that is why I suggested building some bridges. Perhaps for a variety of possible reasons including but not limited to religious background, financial worries and cultural perspectives, the mother may not feel comfortable discussing the medical issues with classroom personnel. Perhaps a school nurse or a trusted other individual could be enlisted to build a positive relationship where needs could be discussed and appropriate steps taken if necessary. Perhaps there has been a significant break-up of trust between the mother and the medical personnel. This can happen with the multitude of complex issues that can be present in CHARGE. Since easy or straightforward answers are not always possible, it is possible to understand where medical personnel can sometimes become frustrated themselves. When that happens it can be very alienating to families. As far as your classroom itself, again I do not know the exact situation, but I would want to ensure that sensory-integration therapy is being provided by a professional trained in that area such as an occupational therapist or a physical therapist or that the program utilized is supervised very closely and frequently by such a professional. Our former experience in this arena was very sad in that services were not perfomed by a trained professional. Our daughter's current OT services through the school are very good. The comparison and impact on our daughter make me cautious when discussing these kinds of services. The comparison of her former services to her current services is like night to day. You may well have a trained PT or OT in the classroom daily, I do not know. But it is just something I felt was important to bring up. Again, I think your writing to the list is very positive. I hope you find responses meaningful and lead to improvements for the student as well. In turn we have a lot to learn from you who seem to be a person who wants to do right by the student and who has valuable training, background and experience to share with us. Mom to Kendra, and Camille At 03:44 PM 6/2/02 +0000, you wrote: >The student is in a very small and intensive multiple disabilities >support classroom. We have instituted both signing and PECs and >there are students who communicate in a variety of ways in the >classroom (augmentative communication, signs, language boards, etc.). >He has not picked up very well on signing, he does better with PECS >but that is difficult too. He does not discriminate pictures >effectively yet. We have a great deal of sensory integration put >into his program. Medical issues in relation to goals can not be put >into an IEP. I assume that he is refluxing because he brings up food >after eating (as much as an hour afterward). However I will never >know until he sees a doctor. We can not offer him feeding therapy >because we need a swallowing study first. He does receive oral motor >stim. He does have vision therapy and he has good vision in one eye, >refuses to wear glasses but we don't have a current prescription >either. >I admit that I have a hard time with the argument that he should not >be diagnosed with mental retardation. With the intensive education >he receives, progress has been slow. And to be honest mental >retardation is based up the child's current functioning, even if the >lowered IQ is the result of his intense need for sensory input. To >not give him the label of MR I think is a disservice for him because >it offers so many education opportunities and wrap around services. >In anycase thank you for the input. > > > > >I have a student with CHARGE Syndrome. I have researched the > > >syndrome and I have made progress with him this year. He suffers > > >from severe mental retardation, lowered of course by sensory > > >impairments. He has caused me a great deal of joy and >frustration. I > > >have struggled to deal with some of his behaviors. He plays with >his > > >spit, toilet water, and likes to spit out food or water, he also > > >vibrates his lips or spits frequently. The behaviors that involve > > >bodily fluids are of course a risk to the other students and I have > > >not found a good intervention. He is deaf (refuses aides and tests > > >indicate a severe to profound loss) and is very much in his own > > >world. He self stimulates constantly but self stimulating of >course > > >is necessary for him to get the sensory input. > > > > > >The other problem I have is that his mother does not seem to >realize > > >that his syndrome comes with medical problems. He bleeds from the > > >ears at least 3 times a month, refulxes, has fluid in the ears 4 >or 5 > > >times a week, and has difficulty chewing. He has not seen an ENT, > > >opthamologist, or dentist in quite awhile. His mother complains >that > > >he has too many doctors that she would need to take him to. Does > > >anyone have a doctor that treats the whole syndrome? Any >suggestions > > >as to how I might politely fill Mom in on the complications that > > >could go along with CHARGE? In all reality behavior meds would > > >benefit him however we are not going to suggest it because it would > > >require monitoring. > > > > > >Thankyou- noel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 This poor child IS mentally retarded because know one has taught him to communicate ....... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 , As usual, I loved your articulate and thoughtful response. Thanks for the input. Best, Anne, mom of Penina (CHArgE, 5 3/4 years old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 , As usual, I loved your articulate and thoughtful response. Thanks for the input. Best, Anne, mom of Penina (CHArgE, 5 3/4 years old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 That doesn't prove to me that the child is mentally retarded. The child may be language delayed or disordered or have other factors affecting his learning. But I agree with you that it appears the child has not been taught yet to communicate due to some of the factors I just wrote about. At 02:55 PM 6/2/02 -0400, you wrote: >This poor child IS mentally retarded because know one has taught him to >communicate ....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 That doesn't prove to me that the child is mentally retarded. The child may be language delayed or disordered or have other factors affecting his learning. But I agree with you that it appears the child has not been taught yet to communicate due to some of the factors I just wrote about. At 02:55 PM 6/2/02 -0400, you wrote: >This poor child IS mentally retarded because know one has taught him to >communicate ....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 That doesn't prove to me that the child is mentally retarded. The child may be language delayed or disordered or have other factors affecting his learning. But I agree with you that it appears the child has not been taught yet to communicate due to some of the factors I just wrote about. At 02:55 PM 6/2/02 -0400, you wrote: >This poor child IS mentally retarded because know one has taught him to >communicate ....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 Anne, You're too much. You made my day. :-) At 03:04 PM 6/2/02 -0400, you wrote: >, > >As usual, I loved your articulate and thoughtful response. > >Thanks for the input. > >Best, > >Anne, mom of Penina (CHArgE, 5 3/4 years old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 Anne, You're too much. You made my day. :-) At 03:04 PM 6/2/02 -0400, you wrote: >, > >As usual, I loved your articulate and thoughtful response. > >Thanks for the input. > >Best, > >Anne, mom of Penina (CHArgE, 5 3/4 years old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 Anne, You're too much. You made my day. :-) At 03:04 PM 6/2/02 -0400, you wrote: >, > >As usual, I loved your articulate and thoughtful response. > >Thanks for the input. > >Best, > >Anne, mom of Penina (CHArgE, 5 3/4 years old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 I realize that my student has struggled with communication, however a very good education team made of numerous therapist has worked on this. Prior to attending this school he had no communication. The student seems to communicate when he wants to, which is good, but usually stems around food and food alone. If we let him, he would lie on his back the entire day, put everything in his mouth, and spit. We don't let him do this and gets upset about this, but that is the way it has to be. And no, who ever said that mental retardation means a student is no longer able to learn is wrong! I guess that perhaps for those of you who don't like the term mental retardation I could say developmentally delayed. But if the student wasn't given a label, which is only for his educational planning, he would not be able to attend this school in which we have a student to adult ratio of 3 to 1. He has an amazing education team that advocate for him. As far as the communication goes, yes we are using objects and picture combinations, a calendar box, etc. Communication does not seem to be the main problem! When we get him engaged he decreases his self stim, but he still would prefer to sit and stick things in his mouth, vibrate his lips, etc. He walks independently, is working on toilet training, and dressing skills. As far as sight is concerned he has enough vision to see a raisin from at least 20 feet away. He also has a behavioral diagnosis of autism, although I know that is also a controversial diagnosis on this site. But again that diagnosis opens him up to many services. To be honest when I read about the other children who have CHARGE, he resembles a student with autism more. Medically, Mom has good insurance, infact she works in a doctor's office! The child goes from school, to dad, to babysitter, then to Mom to sleep. He spends weekends with Dad. Dad has no control of child's educational or medical needs. The school nurse calls Mom frequently, our social worker is no involved. I guess I would like to hear from anyone out there who is a teacher of a student with CHARGE or a parent of a student with CHARGE who they feel is significantly developmentally delayed. > > > >I have a student with CHARGE Syndrome. I have researched the > > > >syndrome and I have made progress with him this year. He suffers > > > >from severe mental retardation, lowered of course by sensory > > > >impairments. He has caused me a great deal of joy and > >frustration. I > > > >have struggled to deal with some of his behaviors. He plays with > >his > > > >spit, toilet water, and likes to spit out food or water, he also > > > >vibrates his lips or spits frequently. The behaviors that involve > > > >bodily fluids are of course a risk to the other students and I have > > > >not found a good intervention. He is deaf (refuses aides and tests > > > >indicate a severe to profound loss) and is very much in his own > > > >world. He self stimulates constantly but self stimulating of > >course > > > >is necessary for him to get the sensory input. > > > > > > > >The other problem I have is that his mother does not seem to > >realize > > > >that his syndrome comes with medical problems. He bleeds from the > > > >ears at least 3 times a month, refulxes, has fluid in the ears 4 > >or 5 > > > >times a week, and has difficulty chewing. He has not seen an ENT, > > > >opthamologist, or dentist in quite awhile. His mother complains > >that > > > >he has too many doctors that she would need to take him to. Does > > > >anyone have a doctor that treats the whole syndrome? Any > >suggestions > > > >as to how I might politely fill Mom in on the complications that > > > >could go along with CHARGE? In all reality behavior meds would > > > >benefit him however we are not going to suggest it because it would > > > >require monitoring. > > > > > > > >Thankyou- noel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 I realize that my student has struggled with communication, however a very good education team made of numerous therapist has worked on this. Prior to attending this school he had no communication. The student seems to communicate when he wants to, which is good, but usually stems around food and food alone. If we let him, he would lie on his back the entire day, put everything in his mouth, and spit. We don't let him do this and gets upset about this, but that is the way it has to be. And no, who ever said that mental retardation means a student is no longer able to learn is wrong! I guess that perhaps for those of you who don't like the term mental retardation I could say developmentally delayed. But if the student wasn't given a label, which is only for his educational planning, he would not be able to attend this school in which we have a student to adult ratio of 3 to 1. He has an amazing education team that advocate for him. As far as the communication goes, yes we are using objects and picture combinations, a calendar box, etc. Communication does not seem to be the main problem! When we get him engaged he decreases his self stim, but he still would prefer to sit and stick things in his mouth, vibrate his lips, etc. He walks independently, is working on toilet training, and dressing skills. As far as sight is concerned he has enough vision to see a raisin from at least 20 feet away. He also has a behavioral diagnosis of autism, although I know that is also a controversial diagnosis on this site. But again that diagnosis opens him up to many services. To be honest when I read about the other children who have CHARGE, he resembles a student with autism more. Medically, Mom has good insurance, infact she works in a doctor's office! The child goes from school, to dad, to babysitter, then to Mom to sleep. He spends weekends with Dad. Dad has no control of child's educational or medical needs. The school nurse calls Mom frequently, our social worker is no involved. I guess I would like to hear from anyone out there who is a teacher of a student with CHARGE or a parent of a student with CHARGE who they feel is significantly developmentally delayed. > > > >I have a student with CHARGE Syndrome. I have researched the > > > >syndrome and I have made progress with him this year. He suffers > > > >from severe mental retardation, lowered of course by sensory > > > >impairments. He has caused me a great deal of joy and > >frustration. I > > > >have struggled to deal with some of his behaviors. He plays with > >his > > > >spit, toilet water, and likes to spit out food or water, he also > > > >vibrates his lips or spits frequently. The behaviors that involve > > > >bodily fluids are of course a risk to the other students and I have > > > >not found a good intervention. He is deaf (refuses aides and tests > > > >indicate a severe to profound loss) and is very much in his own > > > >world. He self stimulates constantly but self stimulating of > >course > > > >is necessary for him to get the sensory input. > > > > > > > >The other problem I have is that his mother does not seem to > >realize > > > >that his syndrome comes with medical problems. He bleeds from the > > > >ears at least 3 times a month, refulxes, has fluid in the ears 4 > >or 5 > > > >times a week, and has difficulty chewing. He has not seen an ENT, > > > >opthamologist, or dentist in quite awhile. His mother complains > >that > > > >he has too many doctors that she would need to take him to. Does > > > >anyone have a doctor that treats the whole syndrome? Any > >suggestions > > > >as to how I might politely fill Mom in on the complications that > > > >could go along with CHARGE? In all reality behavior meds would > > > >benefit him however we are not going to suggest it because it would > > > >require monitoring. > > > > > > > >Thankyou- noel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 I realize that my student has struggled with communication, however a very good education team made of numerous therapist has worked on this. Prior to attending this school he had no communication. The student seems to communicate when he wants to, which is good, but usually stems around food and food alone. If we let him, he would lie on his back the entire day, put everything in his mouth, and spit. We don't let him do this and gets upset about this, but that is the way it has to be. And no, who ever said that mental retardation means a student is no longer able to learn is wrong! I guess that perhaps for those of you who don't like the term mental retardation I could say developmentally delayed. But if the student wasn't given a label, which is only for his educational planning, he would not be able to attend this school in which we have a student to adult ratio of 3 to 1. He has an amazing education team that advocate for him. As far as the communication goes, yes we are using objects and picture combinations, a calendar box, etc. Communication does not seem to be the main problem! When we get him engaged he decreases his self stim, but he still would prefer to sit and stick things in his mouth, vibrate his lips, etc. He walks independently, is working on toilet training, and dressing skills. As far as sight is concerned he has enough vision to see a raisin from at least 20 feet away. He also has a behavioral diagnosis of autism, although I know that is also a controversial diagnosis on this site. But again that diagnosis opens him up to many services. To be honest when I read about the other children who have CHARGE, he resembles a student with autism more. Medically, Mom has good insurance, infact she works in a doctor's office! The child goes from school, to dad, to babysitter, then to Mom to sleep. He spends weekends with Dad. Dad has no control of child's educational or medical needs. The school nurse calls Mom frequently, our social worker is no involved. I guess I would like to hear from anyone out there who is a teacher of a student with CHARGE or a parent of a student with CHARGE who they feel is significantly developmentally delayed. > > > >I have a student with CHARGE Syndrome. I have researched the > > > >syndrome and I have made progress with him this year. He suffers > > > >from severe mental retardation, lowered of course by sensory > > > >impairments. He has caused me a great deal of joy and > >frustration. I > > > >have struggled to deal with some of his behaviors. He plays with > >his > > > >spit, toilet water, and likes to spit out food or water, he also > > > >vibrates his lips or spits frequently. The behaviors that involve > > > >bodily fluids are of course a risk to the other students and I have > > > >not found a good intervention. He is deaf (refuses aides and tests > > > >indicate a severe to profound loss) and is very much in his own > > > >world. He self stimulates constantly but self stimulating of > >course > > > >is necessary for him to get the sensory input. > > > > > > > >The other problem I have is that his mother does not seem to > >realize > > > >that his syndrome comes with medical problems. He bleeds from the > > > >ears at least 3 times a month, refulxes, has fluid in the ears 4 > >or 5 > > > >times a week, and has difficulty chewing. He has not seen an ENT, > > > >opthamologist, or dentist in quite awhile. His mother complains > >that > > > >he has too many doctors that she would need to take him to. Does > > > >anyone have a doctor that treats the whole syndrome? Any > >suggestions > > > >as to how I might politely fill Mom in on the complications that > > > >could go along with CHARGE? In all reality behavior meds would > > > >benefit him however we are not going to suggest it because it would > > > >require monitoring. > > > > > > > >Thankyou- noel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 I am a mother of a CHARGE child who is significantly delayed - this made me take notice because of the communication issue... my 7yr. old daughter, Cheyenne, almost refuses to sign - she is profoundly deaf & I've been told there's auditory nerve damage, so obviously hearing devices won't work - she now has a great team at school working with her on this, but I'm so glad to see you're not giving up on this child - while he sounds more " severe " than my daughter, I think they're the same in that they may have more potential for learning than we realize because they won't communicate - I know that a diagnosis of " mentally retarded " opens doors for more services, but be careful, many people think the wrong things when they see/hear that term - I wish I could be of some help, but I'm struggling too much with communication issues myself to really suggest anything except to keep trying - these kids seem to have their own schedule for progress that differs greatly with each child & we're not always privy to it, but I've seen that they will progress, no matter how slowly, as long as someone stays dedicated to helping them! Good Luck with child & mother, both! Lori Brittell - Mom2CHaRgEr,Cheyenne > > > > >I have a student with CHARGE Syndrome. I have researched the > > > > >syndrome and I have made progress with him this year. He > suffers > > > > >from severe mental retardation, lowered of course by sensory > > > > >impairments. He has caused me a great deal of joy and > > >frustration. I > > > > >have struggled to deal with some of his behaviors. He plays > with > > >his > > > > >spit, toilet water, and likes to spit out food or water, he > also > > > > >vibrates his lips or spits frequently. The behaviors that > involve > > > > >bodily fluids are of course a risk to the other students and I > have > > > > >not found a good intervention. He is deaf (refuses aides and > tests > > > > >indicate a severe to profound loss) and is very much in his own > > > > >world. He self stimulates constantly but self stimulating of > > >course > > > > >is necessary for him to get the sensory input. > > > > > > > > > >The other problem I have is that his mother does not seem to > > >realize > > > > >that his syndrome comes with medical problems. He bleeds from > the > > > > >ears at least 3 times a month, refulxes, has fluid in the ears > 4 > > >or 5 > > > > >times a week, and has difficulty chewing. He has not seen an > ENT, > > > > >opthamologist, or dentist in quite awhile. His mother > complains > > >that > > > > >he has too many doctors that she would need to take him to. > Does > > > > >anyone have a doctor that treats the whole syndrome? Any > > >suggestions > > > > >as to how I might politely fill Mom in on the complications > that > > > > >could go along with CHARGE? In all reality behavior meds would > > > > >benefit him however we are not going to suggest it because it > would > > > > >require monitoring. > > > > > > > > > >Thankyou- noel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 We fought long and hard - and ultimately successfully - to get an educational diagnosis of deafblindness and to avoid the retardation label. In our school district, retardation is often used as an explanation for a lack of progress. This was incredibly important for because it gave the district an " out " when it declined to put together an appropriate program. It allowed a school psychologist, for example, to swear that she could hear from across the room. When a child isn't TOTALLY deaf or blind or deafblind, too many adults (and in my experience this includes all too many well-trained people without experience with dual sensory deprivation) simply seem to miss the horrendous toll of the disability. Simply put, they just don't get it. Now that is at Perkins and staff understand the sensory impact, it's easier to discuss cognitive issues. I've always felt that it's easiest for people to look at and see whatever they know outside of her: autism, retardation, behavior problems, etc. It's the odd duck who sees the entire picture. In 's case, " retardation " deprived her of services, and I suspect that each educational situation will vary. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 I don't think we mean not to have the label MR, and in fact some of our kids truly do have MR issues, some more than others, but only caution on the mental retardation issue to work with the child as if they have the ability to process information, rather than assuming they can't. Work with our kids is very slow. It took my son two and a half years to go from using his schedule system strictly as a routine to using it as an active form of communication. Unfortunately this is very common with kids with dual sensory impairments, yet they still are very cognitive. It sounds like you are doing great things in your program. Do you have a deafblind* consultant working with your team? * Often times, because a child has some vision or some hearing folks do not seek out services from a deafblind specialist. You probably already know this, but in case you don't, the term deafblind refers only to the combined vision and hearing loss rather than total vision and total hearing loss. Specialists in this field can be very helpful consulting with educational teams and families. Kim Mother of Dylan 6, Kayla 11, Tyler 14 ---------- > >To: CHARGE >Subject: Re: Student with Charge >Date: Sun, Jun 2, 2002, 8:44 AM > > The student is in a very small and intensive multiple disabilities > support classroom. We have instituted both signing and PECs and > there are students who communicate in a variety of ways in the > classroom (augmentative communication, signs, language boards, etc.). > He has not picked up very well on signing, he does better with PECS > but that is difficult too. He does not discriminate pictures > effectively yet. We have a great deal of sensory integration put > into his program. Medical issues in relation to goals can not be put > into an IEP. I assume that he is refluxing because he brings up food > after eating (as much as an hour afterward). However I will never > know until he sees a doctor. We can not offer him feeding therapy > because we need a swallowing study first. He does receive oral motor > stim. He does have vision therapy and he has good vision in one eye, > refuses to wear glasses but we don't have a current prescription > either. > I admit that I have a hard time with the argument that he should not > be diagnosed with mental retardation. With the intensive education > he receives, progress has been slow. And to be honest mental > retardation is based up the child's current functioning, even if the > lowered IQ is the result of his intense need for sensory input. To > not give him the label of MR I think is a disservice for him because > it offers so many education opportunities and wrap around services. > In anycase thank you for the input. > > >> >I have a student with CHARGE Syndrome. I have researched the >> >syndrome and I have made progress with him this year. He suffers >> >from severe mental retardation, lowered of course by sensory >> >impairments. He has caused me a great deal of joy and > frustration. I >> >have struggled to deal with some of his behaviors. He plays with > his >> >spit, toilet water, and likes to spit out food or water, he also >> >vibrates his lips or spits frequently. The behaviors that involve >> >bodily fluids are of course a risk to the other students and I have >> >not found a good intervention. He is deaf (refuses aides and tests >> >indicate a severe to profound loss) and is very much in his own >> >world. He self stimulates constantly but self stimulating of > course >> >is necessary for him to get the sensory input. >> > >> >The other problem I have is that his mother does not seem to > realize >> >that his syndrome comes with medical problems. He bleeds from the >> >ears at least 3 times a month, refulxes, has fluid in the ears 4 > or 5 >> >times a week, and has difficulty chewing. He has not seen an ENT, >> >opthamologist, or dentist in quite awhile. His mother complains > that >> >he has too many doctors that she would need to take him to. Does >> >anyone have a doctor that treats the whole syndrome? Any > suggestions >> >as to how I might politely fill Mom in on the complications that >> >could go along with CHARGE? In all reality behavior meds would >> >benefit him however we are not going to suggest it because it would >> >require monitoring. >> > >> >Thankyou- noel > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 I don't think we mean not to have the label MR, and in fact some of our kids truly do have MR issues, some more than others, but only caution on the mental retardation issue to work with the child as if they have the ability to process information, rather than assuming they can't. Work with our kids is very slow. It took my son two and a half years to go from using his schedule system strictly as a routine to using it as an active form of communication. Unfortunately this is very common with kids with dual sensory impairments, yet they still are very cognitive. It sounds like you are doing great things in your program. Do you have a deafblind* consultant working with your team? * Often times, because a child has some vision or some hearing folks do not seek out services from a deafblind specialist. You probably already know this, but in case you don't, the term deafblind refers only to the combined vision and hearing loss rather than total vision and total hearing loss. Specialists in this field can be very helpful consulting with educational teams and families. Kim Mother of Dylan 6, Kayla 11, Tyler 14 ---------- > >To: CHARGE >Subject: Re: Student with Charge >Date: Sun, Jun 2, 2002, 8:44 AM > > The student is in a very small and intensive multiple disabilities > support classroom. We have instituted both signing and PECs and > there are students who communicate in a variety of ways in the > classroom (augmentative communication, signs, language boards, etc.). > He has not picked up very well on signing, he does better with PECS > but that is difficult too. He does not discriminate pictures > effectively yet. We have a great deal of sensory integration put > into his program. Medical issues in relation to goals can not be put > into an IEP. I assume that he is refluxing because he brings up food > after eating (as much as an hour afterward). However I will never > know until he sees a doctor. We can not offer him feeding therapy > because we need a swallowing study first. He does receive oral motor > stim. He does have vision therapy and he has good vision in one eye, > refuses to wear glasses but we don't have a current prescription > either. > I admit that I have a hard time with the argument that he should not > be diagnosed with mental retardation. With the intensive education > he receives, progress has been slow. And to be honest mental > retardation is based up the child's current functioning, even if the > lowered IQ is the result of his intense need for sensory input. To > not give him the label of MR I think is a disservice for him because > it offers so many education opportunities and wrap around services. > In anycase thank you for the input. > > >> >I have a student with CHARGE Syndrome. I have researched the >> >syndrome and I have made progress with him this year. He suffers >> >from severe mental retardation, lowered of course by sensory >> >impairments. He has caused me a great deal of joy and > frustration. I >> >have struggled to deal with some of his behaviors. He plays with > his >> >spit, toilet water, and likes to spit out food or water, he also >> >vibrates his lips or spits frequently. The behaviors that involve >> >bodily fluids are of course a risk to the other students and I have >> >not found a good intervention. He is deaf (refuses aides and tests >> >indicate a severe to profound loss) and is very much in his own >> >world. He self stimulates constantly but self stimulating of > course >> >is necessary for him to get the sensory input. >> > >> >The other problem I have is that his mother does not seem to > realize >> >that his syndrome comes with medical problems. He bleeds from the >> >ears at least 3 times a month, refulxes, has fluid in the ears 4 > or 5 >> >times a week, and has difficulty chewing. He has not seen an ENT, >> >opthamologist, or dentist in quite awhile. His mother complains > that >> >he has too many doctors that she would need to take him to. Does >> >anyone have a doctor that treats the whole syndrome? Any > suggestions >> >as to how I might politely fill Mom in on the complications that >> >could go along with CHARGE? In all reality behavior meds would >> >benefit him however we are not going to suggest it because it would >> >require monitoring. >> > >> >Thankyou- noel > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 My child is significantly developmentally delayed. He has no hearing and some usable vision in the left eye, although he appears to have a cortical vision impairment as well. He can see surprising detail, then other times not recognize that I am right there in front of him. He appears to see great, but does not seem to pick up visual sign. He also has many autistic behaviors, although he does not have a formal diagnosis at this time. He is almost 6. He has an intervener as part of his educational team. If she focuses on another student, Dylan will go back into his world, and she may have to work for another hour to get him engaged in learning again. Without an intervener he would be in " lala land " all day living for movement and light. I mentioned how slow it has been for him to really grasp his object / calendar system as a way to communicate. He is now attending to tactile sign and responding to some visual sign, but does not use sign expressively. In addition he is making great strides in socializing and all of his other IEP goals. And yes, he does test as MR according to the developmental scales and yes, we need the diagnosis for services. As you've realized on the list, it is just a hot spot with us parents, because sometimes our kids are written off from birth as having only a limited amount of potential. I was told when he was 3 weeks old that the maximum IQ we could expect was 70. At 3 the psychologist was quite concerned that he was significantly MR. When she tested him this year, after 3 years of having a skilled intervener, she was floored at his cognitive abilities. We believe that as we continue to have an intensive program with a skilled intervener that he may well progress out of the MR category, as many CHARGE kids do. If he is left to his own devices, he will test lower and lower. This is different than kids with other syndromes, which no matter the intervention their IQ tends to test out relatively stable over time. This indicates that the potential to learn is there, we just have to figure out how to reach it. The subject of an Intervener is a controversial and often misunderstood subject. If you would like to know more about it and how it is intended to work, you can contact me at . Kim Lauger ---------- > >To: CHARGE >Subject: Re: Student with Charge >Date: Sun, Jun 2, 2002, 3:38 PM > > I realize that my student has struggled with communication, however a > very good education team made of numerous therapist has worked on > this. Prior to attending this school he had no communication. The > student seems to communicate when he wants to, which is good, but > usually stems around food and food alone. If we let him, he would > lie on his back the entire day, put everything in his mouth, and > spit. We don't let him do this and gets upset about this, but that > is the way it has to be. And no, who ever said that mental > retardation means a student is no longer able to learn is wrong! I > guess that perhaps for those of you who don't like the term mental > retardation I could say developmentally delayed. But if the student > wasn't given a label, which is only for his educational planning, he > would not be able to attend this school in which we have a student to > adult ratio of 3 to 1. He has an amazing education team that > advocate for him. > As far as the communication goes, yes we are using objects and > picture combinations, a calendar box, etc. Communication does not > seem to be the main problem! When we get him engaged he decreases > his self stim, but he still would prefer to sit and stick things in > his mouth, vibrate his lips, etc. He walks independently, is working > on toilet training, and dressing skills. As far as sight is > concerned he has enough vision to see a raisin from at least 20 feet > away. He also has a behavioral diagnosis of autism, although I know > that is also a controversial diagnosis on this site. But again that > diagnosis opens him up to many services. To be honest when I read > about the other children who have CHARGE, he resembles a student with > autism more. > Medically, Mom has good insurance, infact she works in a doctor's > office! The child goes from school, to dad, to babysitter, then to > Mom to sleep. He spends weekends with Dad. Dad has no control of > child's educational or medical needs. The school nurse calls Mom > frequently, our social worker is no involved. > > I guess I would like to hear from anyone out there who is a teacher > of a student with CHARGE or a parent of a student with CHARGE who > they feel is significantly developmentally delayed. > > >> > > >I have a student with CHARGE Syndrome. I have researched the >> > > >syndrome and I have made progress with him this year. He > suffers >> > > >from severe mental retardation, lowered of course by sensory >> > > >impairments. He has caused me a great deal of joy and >> >frustration. I >> > > >have struggled to deal with some of his behaviors. He plays > with >> >his >> > > >spit, toilet water, and likes to spit out food or water, he > also >> > > >vibrates his lips or spits frequently. The behaviors that > involve >> > > >bodily fluids are of course a risk to the other students and I > have >> > > >not found a good intervention. He is deaf (refuses aides and > tests >> > > >indicate a severe to profound loss) and is very much in his own >> > > >world. He self stimulates constantly but self stimulating of >> >course >> > > >is necessary for him to get the sensory input. >> > > > >> > > >The other problem I have is that his mother does not seem to >> >realize >> > > >that his syndrome comes with medical problems. He bleeds from > the >> > > >ears at least 3 times a month, refulxes, has fluid in the ears > 4 >> >or 5 >> > > >times a week, and has difficulty chewing. He has not seen an > ENT, >> > > >opthamologist, or dentist in quite awhile. His mother > complains >> >that >> > > >he has too many doctors that she would need to take him to. > Does >> > > >anyone have a doctor that treats the whole syndrome? Any >> >suggestions >> > > >as to how I might politely fill Mom in on the complications > that >> > > >could go along with CHARGE? In all reality behavior meds would >> > > >benefit him however we are not going to suggest it because it > would >> > > >require monitoring. >> > > > >> > > >Thankyou- noel > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Hi: I am catching up on this great discussion-I am a Deafbind and Special Education specialist teacher who has worked hands with individuals who are deafblind for 15 years, and the last 3 years with blind/LD, blind/mild cognitive delay. (Residential Provincial school similar to Perkins in the US, but not as grand) We still learn everyday with each new kid. I caught a couple things. It will be important for you to find out the exact visual diagnosis. Usually with CHARGE, the vision problem is coloboma of the retina which creates a field visual loss. This would explain why the child may be able to see the raisin across the room and yet on his back function as blind. The top half of the visual field is usually gone, and on their back they would function as blind to the environment, except the directed input in the right place from their stimming fingers or toy. I agree that CHARGE children who are more self-absorbed and are more inwardly directed may also have optic nerve coloboma--the image is there/its gone/there/its gone. The brain cannot attatch the meaning to what is seen. It sounds like this is an individual who is absorbed with self-stim. and probably startles and or cannot integrate external input, and would rather ignore it --anything from without (audiorty info. tactual info. hearing aides, glasses, etc) The fact that he is using " devices " of his own design such as his own spit, etc. is a way for the brain to stay healthy and create and keep brain connections--this shows that he is potentially quite bright, NOT retarded. I bet he also has some unique things he does with the spit. Sometimes we make the error of starting too far up on the communication ladder--the PECS thing is really not the start, nor are the concrete cues. Signing is not the start. When I do my communication workshops, I talk about the " Resonance " stage and I usually hear the " agh ha! " This is the cause/effect stage--before the child can understand representation, (such as cues or pictures) he has have a relationship with the environment. The concept of " other " in the communication exchange has not developed--he may be totally egocentric. He has to first cause effects on the environment, and realize that by his actions something in the environment will change. The " INTERVENOR " (Canadian spelling) is needed (1 +1) to interact, starting from behind the child on the floor, where he has to lean on your back. From your play mov't together, you gradually make a change, then introduce a gesture to refer to that change. (example rock, rock rock STOP) When you see that the child is picking up on your pattern of mov't, watch for glinches of his anticipation of the change, ...gradually he begins to initiate the change. Other cause and effect play activities with the INTERVENOR are needed, so that he soon realizes that by his actions, an effect will be created. The " other " (you) then reacts to his change, and thereby is the start of a communication system. Also, in the McINNIS theory, the first INTERACTION stage for deafblind is " the child will resist " . The next stage is " the child will tolerate passively " . It is important to go a little beyond the resistance (example with the hearing aides and glasses) for short periods during an enjoyable pleasure play interaction so that the child can slowly building on learning about the " external " things in this world of " simply self " . It's a scarry place to begin to hear sounds or see images you don't completely understand. The " INTERVENOR " makes this a safe place for the child, to begin to explore together some of these things that make sound or colours, patterns, textures, etc. together. I would suggest the book " Deaf Blind Infants and Children " by McInnis and Treffrey, University of Toronto Press. I could send some clips from my book " Calendars: Reactive Interactive Communication " by e-mail if you wish. ANN GLOYN, B.Ph.Ed., B.A., B.Ed., Deafblind and Spec. Ed. Specialist speedturtle76 wrote: > I realize that my student has struggled with communication, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Very nice Ann. Kim ---------- > >To: CHARGE >Subject: Re: Re: Student with Charge >Date: Mon, Jun 3, 2002, 4:13 PM > > Hi: I am catching up on this great discussion-I am a Deafbind and Special > Education specialist teacher who > has worked hands with individuals who are deafblind for 15 years, and the > last 3 years with blind/LD, > blind/mild cognitive delay. (Residential Provincial school similar to > Perkins in the US, but not as grand) > We still learn everyday with each new kid. I caught a couple things. It > will be important for you to find > out the exact visual diagnosis. Usually with CHARGE, the vision problem is > coloboma of the retina which > creates a field visual loss. This would explain why the child may be able > to see the raisin across the room > and yet on his back function as blind. The top half of the visual field is > usually gone, and on their back > they would function as blind to the environment, except the directed input > in the right place from their > stimming fingers or toy. I agree that CHARGE children who are more > self-absorbed and are more inwardly > directed may also have optic nerve coloboma--the image is there/its > gone/there/its gone. The brain cannot > attatch the meaning to what is seen. It sounds like this is an > individual who is absorbed with self-stim. > and probably startles and or cannot integrate external input, and would > rather ignore it --anything from > without (audiorty info. tactual info. hearing aides, glasses, etc) The > fact that he is using " devices " of > his own design such as his own spit, etc. is a way for the brain to stay > healthy and create and keep brain > connections--this shows that he is potentially quite bright, NOT retarded. > I bet he also has some unique > things he does with the spit. Sometimes we make the error of starting too > far up on the communication > ladder--the PECS thing is really not the start, nor are the concrete cues. > Signing is not the start. When I > do my communication workshops, I talk about the " Resonance " stage and I > usually hear the " agh ha! " This is > the cause/effect stage--before the child can understand representation, > (such as cues or pictures) he has > have a relationship with the environment. The concept of " other " in the > communication exchange has not > developed--he may be totally egocentric. He has to first cause effects on > the environment, and realize that > by his actions something in the environment will change. The " INTERVENOR " > (Canadian spelling) is needed (1 > +1) to interact, starting from behind the child on the floor, where he has > to lean on your back. From your > play mov't together, you gradually make a change, then introduce a > gesture to refer to that change. > (example rock, rock rock STOP) When you see that the child is picking up on > your pattern of mov't, watch for > glinches of his anticipation of the change, ...gradually he begins to > initiate the change. Other cause and > effect play activities with the INTERVENOR are needed, so that he soon > realizes that by his actions, an > effect will be created. The " other " (you) then reacts to his change, and > thereby is the start of a > communication system. Also, in the McINNIS theory, the first INTERACTION > stage for deafblind is " the child > will resist " . The next stage is " the child will tolerate passively " . It > is important to go a little beyond > the resistance (example with the hearing aides and glasses) for short > periods during an enjoyable pleasure > play interaction so that the child can slowly building on learning about > the " external " things in this world > of " simply self " . It's a scarry place to begin to hear sounds or see > images you don't completely > understand. The " INTERVENOR " makes this a safe place for the child, to > begin to explore together some of > these things that make sound or colours, patterns, textures, etc. together. > I would suggest the book " Deaf > Blind Infants and Children " by McInnis and Treffrey, University of Toronto > Press. I could send some clips > from my book " Calendars: Reactive Interactive Communication " by e-mail if > you wish. > ANN GLOYN, B.Ph.Ed., B.A., B.Ed., Deafblind and Spec. Ed. Specialist > > speedturtle76 wrote: > >> I realize that my student has struggled with communication, > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Very nice Ann. Kim ---------- > >To: CHARGE >Subject: Re: Re: Student with Charge >Date: Mon, Jun 3, 2002, 4:13 PM > > Hi: I am catching up on this great discussion-I am a Deafbind and Special > Education specialist teacher who > has worked hands with individuals who are deafblind for 15 years, and the > last 3 years with blind/LD, > blind/mild cognitive delay. (Residential Provincial school similar to > Perkins in the US, but not as grand) > We still learn everyday with each new kid. I caught a couple things. It > will be important for you to find > out the exact visual diagnosis. Usually with CHARGE, the vision problem is > coloboma of the retina which > creates a field visual loss. This would explain why the child may be able > to see the raisin across the room > and yet on his back function as blind. The top half of the visual field is > usually gone, and on their back > they would function as blind to the environment, except the directed input > in the right place from their > stimming fingers or toy. I agree that CHARGE children who are more > self-absorbed and are more inwardly > directed may also have optic nerve coloboma--the image is there/its > gone/there/its gone. The brain cannot > attatch the meaning to what is seen. It sounds like this is an > individual who is absorbed with self-stim. > and probably startles and or cannot integrate external input, and would > rather ignore it --anything from > without (audiorty info. tactual info. hearing aides, glasses, etc) The > fact that he is using " devices " of > his own design such as his own spit, etc. is a way for the brain to stay > healthy and create and keep brain > connections--this shows that he is potentially quite bright, NOT retarded. > I bet he also has some unique > things he does with the spit. Sometimes we make the error of starting too > far up on the communication > ladder--the PECS thing is really not the start, nor are the concrete cues. > Signing is not the start. When I > do my communication workshops, I talk about the " Resonance " stage and I > usually hear the " agh ha! " This is > the cause/effect stage--before the child can understand representation, > (such as cues or pictures) he has > have a relationship with the environment. The concept of " other " in the > communication exchange has not > developed--he may be totally egocentric. He has to first cause effects on > the environment, and realize that > by his actions something in the environment will change. The " INTERVENOR " > (Canadian spelling) is needed (1 > +1) to interact, starting from behind the child on the floor, where he has > to lean on your back. From your > play mov't together, you gradually make a change, then introduce a > gesture to refer to that change. > (example rock, rock rock STOP) When you see that the child is picking up on > your pattern of mov't, watch for > glinches of his anticipation of the change, ...gradually he begins to > initiate the change. Other cause and > effect play activities with the INTERVENOR are needed, so that he soon > realizes that by his actions, an > effect will be created. The " other " (you) then reacts to his change, and > thereby is the start of a > communication system. Also, in the McINNIS theory, the first INTERACTION > stage for deafblind is " the child > will resist " . The next stage is " the child will tolerate passively " . It > is important to go a little beyond > the resistance (example with the hearing aides and glasses) for short > periods during an enjoyable pleasure > play interaction so that the child can slowly building on learning about > the " external " things in this world > of " simply self " . It's a scarry place to begin to hear sounds or see > images you don't completely > understand. The " INTERVENOR " makes this a safe place for the child, to > begin to explore together some of > these things that make sound or colours, patterns, textures, etc. together. > I would suggest the book " Deaf > Blind Infants and Children " by McInnis and Treffrey, University of Toronto > Press. I could send some clips > from my book " Calendars: Reactive Interactive Communication " by e-mail if > you wish. > ANN GLOYN, B.Ph.Ed., B.A., B.Ed., Deafblind and Spec. Ed. Specialist > > speedturtle76 wrote: > >> I realize that my student has struggled with communication, > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
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