Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 I find this all so interesting. A lot of this sounds like sensory integration issues, which many people with a variety of chronic conditions/disabilities experience. I especially like your description of not knowing where your foot will come down on the stair -- I think that must be just like what happens with my daughter. Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 when you write " I like to use my computer at night with the lights out .... because I can focus better on the screen and not be distracted by things moving in my peripheral vision. " do you mean that things that are moving in you peripheral vision (like people or TV or clock pendulum, etc.) bother you or that things in your peripheral vision appear to move when they should be stationary (or is it stationery?) i think you mean the first, but i am curious as often the second happens to me, and I believe my child has this happen too thanks! and Hooray for elevators over escalators! escalators are a problem cara Superwoman senses! A number of adults with Mito complain not only of sensitivity to sound but also to smell, taste, vision and touch. In other words, their sensory systems are heightened. I have a great deal of trouble concentrating on ANYTHING if there is sound in the background such as a radio or TV. Likewise if there are things moving or colourful I cannot concentrate on any other sensory stimulus. If something is moving to the touch ..... such as a foot thumping on the floor .... or rough to the touch such as a pebbled pavement .... my instinct is to move away. I like the feel of smooth texture though. I like to use my computer at night with the lights out .... because I can focus better on the screen and not be distracted by things moving in my peripheral vision. I have been told it is autonomic dysfunction. This would go along, then, with my sensitivity to heat and cold. I gather it also goes along with proprioception .... i have trouble relating where my body is in space. When I am going downstairs, I have trouble knowing when my foot will touch the floor .... truly weird! So ..... when no one is looking I face the stairs when I come down them so I can use my toe to touch the steps! In public I allow everyone to pass me and proceed SLOWLY! If there is an odour around .... I will smell it. Ask me to tell you what spices are in something .... I am rarely wrong! So ... all this personal information, just to let you know that what your child may be experiencing is autonomic dysfunction, which is yet another of the areas Mito affects. What is most interesting is the coping skills I have had to develop in order to try and mask the fact that I am Sensory SUPERWOMAN!!!!! <GRIN> Jean Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 when you write " I like to use my computer at night with the lights out .... because I can focus better on the screen and not be distracted by things moving in my peripheral vision. " do you mean that things that are moving in you peripheral vision (like people or TV or clock pendulum, etc.) bother you or that things in your peripheral vision appear to move when they should be stationary (or is it stationery?) i think you mean the first, but i am curious as often the second happens to me, and I believe my child has this happen too thanks! and Hooray for elevators over escalators! escalators are a problem cara Superwoman senses! A number of adults with Mito complain not only of sensitivity to sound but also to smell, taste, vision and touch. In other words, their sensory systems are heightened. I have a great deal of trouble concentrating on ANYTHING if there is sound in the background such as a radio or TV. Likewise if there are things moving or colourful I cannot concentrate on any other sensory stimulus. If something is moving to the touch ..... such as a foot thumping on the floor .... or rough to the touch such as a pebbled pavement .... my instinct is to move away. I like the feel of smooth texture though. I like to use my computer at night with the lights out .... because I can focus better on the screen and not be distracted by things moving in my peripheral vision. I have been told it is autonomic dysfunction. This would go along, then, with my sensitivity to heat and cold. I gather it also goes along with proprioception .... i have trouble relating where my body is in space. When I am going downstairs, I have trouble knowing when my foot will touch the floor .... truly weird! So ..... when no one is looking I face the stairs when I come down them so I can use my toe to touch the steps! In public I allow everyone to pass me and proceed SLOWLY! If there is an odour around .... I will smell it. Ask me to tell you what spices are in something .... I am rarely wrong! So ... all this personal information, just to let you know that what your child may be experiencing is autonomic dysfunction, which is yet another of the areas Mito affects. What is most interesting is the coping skills I have had to develop in order to try and mask the fact that I am Sensory SUPERWOMAN!!!!! <GRIN> Jean Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 when you write " I like to use my computer at night with the lights out .... because I can focus better on the screen and not be distracted by things moving in my peripheral vision. " do you mean that things that are moving in you peripheral vision (like people or TV or clock pendulum, etc.) bother you or that things in your peripheral vision appear to move when they should be stationary (or is it stationery?) i think you mean the first, but i am curious as often the second happens to me, and I believe my child has this happen too thanks! and Hooray for elevators over escalators! escalators are a problem cara Superwoman senses! A number of adults with Mito complain not only of sensitivity to sound but also to smell, taste, vision and touch. In other words, their sensory systems are heightened. I have a great deal of trouble concentrating on ANYTHING if there is sound in the background such as a radio or TV. Likewise if there are things moving or colourful I cannot concentrate on any other sensory stimulus. If something is moving to the touch ..... such as a foot thumping on the floor .... or rough to the touch such as a pebbled pavement .... my instinct is to move away. I like the feel of smooth texture though. I like to use my computer at night with the lights out .... because I can focus better on the screen and not be distracted by things moving in my peripheral vision. I have been told it is autonomic dysfunction. This would go along, then, with my sensitivity to heat and cold. I gather it also goes along with proprioception .... i have trouble relating where my body is in space. When I am going downstairs, I have trouble knowing when my foot will touch the floor .... truly weird! So ..... when no one is looking I face the stairs when I come down them so I can use my toe to touch the steps! In public I allow everyone to pass me and proceed SLOWLY! If there is an odour around .... I will smell it. Ask me to tell you what spices are in something .... I am rarely wrong! So ... all this personal information, just to let you know that what your child may be experiencing is autonomic dysfunction, which is yet another of the areas Mito affects. What is most interesting is the coping skills I have had to develop in order to try and mask the fact that I am Sensory SUPERWOMAN!!!!! <GRIN> Jean Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 In a message dated 2/9/03 4:34:45 AM Eastern Standard Time, Mito writes: A number of adults with Mito complain not only of sensitivity to sound but also to smell, taste, vision and touch. In other words, their sensory systems are heightened. Very interesting. I am 25 yrs old and am being suspected of having mito. I have a lot of dysautonomic symptoms, as well. When I don't feel good I have noticed that when I am in places with a lot of sudden loud noises such as fireworks, that my body is super sensitive to the noises. I almost feel overwhelmed by the amount of noise and my body will even start twitching and having little muscle jerks when this happens. When I had my MRI last year the same thing happened with the noise that the machine made. Do any of you/ your children respond this way to MRI's? My doctors had never really heard of that sort of response before. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 In a message dated 2/9/03 4:34:45 AM Eastern Standard Time, Mito writes: A number of adults with Mito complain not only of sensitivity to sound but also to smell, taste, vision and touch. In other words, their sensory systems are heightened. Very interesting. I am 25 yrs old and am being suspected of having mito. I have a lot of dysautonomic symptoms, as well. When I don't feel good I have noticed that when I am in places with a lot of sudden loud noises such as fireworks, that my body is super sensitive to the noises. I almost feel overwhelmed by the amount of noise and my body will even start twitching and having little muscle jerks when this happens. When I had my MRI last year the same thing happened with the noise that the machine made. Do any of you/ your children respond this way to MRI's? My doctors had never really heard of that sort of response before. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 In a message dated 2/9/03 4:34:45 AM Eastern Standard Time, Mito writes: A number of adults with Mito complain not only of sensitivity to sound but also to smell, taste, vision and touch. In other words, their sensory systems are heightened. Very interesting. I am 25 yrs old and am being suspected of having mito. I have a lot of dysautonomic symptoms, as well. When I don't feel good I have noticed that when I am in places with a lot of sudden loud noises such as fireworks, that my body is super sensitive to the noises. I almost feel overwhelmed by the amount of noise and my body will even start twitching and having little muscle jerks when this happens. When I had my MRI last year the same thing happened with the noise that the machine made. Do any of you/ your children respond this way to MRI's? My doctors had never really heard of that sort of response before. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 So Jean: Would you say that may be moving her to the morning program may be benefical for her or could she still be having these moments then, too? Is this a progression of the disease? She had some of these issues last year, but more this year. And it's more at school than at home. She is impatient at home when she can't do some thing right away; like take a bath if she hears the tub filling up with water for her. She starts to cry and then doesn't really listen to us when we use short sentences to explain what is happening. It's like she is falling a part like a toddler. Which is where she may be at cognitive age wise. She will be 5 the end of April. How can I help the teachers when she gets like this? There are only two of them in the room and other times the therapists are there working with Leah, too when this happens. I'm just not sure which way to go here and trying to understand these issues and help the school out, too without changing our routine, too much. Thanks, if I remember I thought you did some thing as a teacher at one point. I believe I will keep Leah in the afternoon. But am willing to try a couple of weeks of this morning routine. It would seem that they could get an understanding in a couple of weeks instead the two months that they want. Am I out of line in suggesting that? Nerenhausen mom to Leah Shepherd wrote: > A number of adults with Mito complain not only of sensitivity to sound > but also to smell, taste, vision and touch. In other words, their > sensory systems are heightened. > > I have a great deal of trouble concentrating on ANYTHING if there is > sound in the background such as a radio or TV. Likewise if there are > things moving or colourful I cannot concentrate on any other sensory > stimulus. > > If something is moving to the touch ..... such as a foot thumping on the > floor .... or rough to the touch such as a pebbled pavement .... my > instinct is to move away. I like the feel of smooth texture though. > > I like to use my computer at night with the lights out .... because I > can focus better on the screen and not be distracted by things moving in > my peripheral vision. > > I have been told it is autonomic dysfunction. This would go along, > then, with my sensitivity to heat and cold. > > I gather it also goes along with proprioception .... i have trouble > relating where my body is in space. When I am going downstairs, I have > trouble knowing when my foot will touch the floor .... truly weird! So > ..... when no one is looking I face the stairs when I come down them so I > can use my toe to touch the steps! In public I allow everyone to pass > me and proceed SLOWLY! > > If there is an odour around .... I will smell it. Ask me to tell you > what spices are in something .... I am rarely wrong! > > So ... all this personal information, just to let you know that what > your child may be experiencing is autonomic dysfunction, which is yet > another of the areas Mito affects. > > What is most interesting is the coping skills I have had to develop in > order to try and mask the fact that I am Sensory SUPERWOMAN!!!!! <GRIN> > > Jean > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 So Jean: Would you say that may be moving her to the morning program may be benefical for her or could she still be having these moments then, too? Is this a progression of the disease? She had some of these issues last year, but more this year. And it's more at school than at home. She is impatient at home when she can't do some thing right away; like take a bath if she hears the tub filling up with water for her. She starts to cry and then doesn't really listen to us when we use short sentences to explain what is happening. It's like she is falling a part like a toddler. Which is where she may be at cognitive age wise. She will be 5 the end of April. How can I help the teachers when she gets like this? There are only two of them in the room and other times the therapists are there working with Leah, too when this happens. I'm just not sure which way to go here and trying to understand these issues and help the school out, too without changing our routine, too much. Thanks, if I remember I thought you did some thing as a teacher at one point. I believe I will keep Leah in the afternoon. But am willing to try a couple of weeks of this morning routine. It would seem that they could get an understanding in a couple of weeks instead the two months that they want. Am I out of line in suggesting that? Nerenhausen mom to Leah Shepherd wrote: > A number of adults with Mito complain not only of sensitivity to sound > but also to smell, taste, vision and touch. In other words, their > sensory systems are heightened. > > I have a great deal of trouble concentrating on ANYTHING if there is > sound in the background such as a radio or TV. Likewise if there are > things moving or colourful I cannot concentrate on any other sensory > stimulus. > > If something is moving to the touch ..... such as a foot thumping on the > floor .... or rough to the touch such as a pebbled pavement .... my > instinct is to move away. I like the feel of smooth texture though. > > I like to use my computer at night with the lights out .... because I > can focus better on the screen and not be distracted by things moving in > my peripheral vision. > > I have been told it is autonomic dysfunction. This would go along, > then, with my sensitivity to heat and cold. > > I gather it also goes along with proprioception .... i have trouble > relating where my body is in space. When I am going downstairs, I have > trouble knowing when my foot will touch the floor .... truly weird! So > ..... when no one is looking I face the stairs when I come down them so I > can use my toe to touch the steps! In public I allow everyone to pass > me and proceed SLOWLY! > > If there is an odour around .... I will smell it. Ask me to tell you > what spices are in something .... I am rarely wrong! > > So ... all this personal information, just to let you know that what > your child may be experiencing is autonomic dysfunction, which is yet > another of the areas Mito affects. > > What is most interesting is the coping skills I have had to develop in > order to try and mask the fact that I am Sensory SUPERWOMAN!!!!! <GRIN> > > Jean > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 So Jean: Would you say that may be moving her to the morning program may be benefical for her or could she still be having these moments then, too? Is this a progression of the disease? She had some of these issues last year, but more this year. And it's more at school than at home. She is impatient at home when she can't do some thing right away; like take a bath if she hears the tub filling up with water for her. She starts to cry and then doesn't really listen to us when we use short sentences to explain what is happening. It's like she is falling a part like a toddler. Which is where she may be at cognitive age wise. She will be 5 the end of April. How can I help the teachers when she gets like this? There are only two of them in the room and other times the therapists are there working with Leah, too when this happens. I'm just not sure which way to go here and trying to understand these issues and help the school out, too without changing our routine, too much. Thanks, if I remember I thought you did some thing as a teacher at one point. I believe I will keep Leah in the afternoon. But am willing to try a couple of weeks of this morning routine. It would seem that they could get an understanding in a couple of weeks instead the two months that they want. Am I out of line in suggesting that? Nerenhausen mom to Leah Shepherd wrote: > A number of adults with Mito complain not only of sensitivity to sound > but also to smell, taste, vision and touch. In other words, their > sensory systems are heightened. > > I have a great deal of trouble concentrating on ANYTHING if there is > sound in the background such as a radio or TV. Likewise if there are > things moving or colourful I cannot concentrate on any other sensory > stimulus. > > If something is moving to the touch ..... such as a foot thumping on the > floor .... or rough to the touch such as a pebbled pavement .... my > instinct is to move away. I like the feel of smooth texture though. > > I like to use my computer at night with the lights out .... because I > can focus better on the screen and not be distracted by things moving in > my peripheral vision. > > I have been told it is autonomic dysfunction. This would go along, > then, with my sensitivity to heat and cold. > > I gather it also goes along with proprioception .... i have trouble > relating where my body is in space. When I am going downstairs, I have > trouble knowing when my foot will touch the floor .... truly weird! So > ..... when no one is looking I face the stairs when I come down them so I > can use my toe to touch the steps! In public I allow everyone to pass > me and proceed SLOWLY! > > If there is an odour around .... I will smell it. Ask me to tell you > what spices are in something .... I am rarely wrong! > > So ... all this personal information, just to let you know that what > your child may be experiencing is autonomic dysfunction, which is yet > another of the areas Mito affects. > > What is most interesting is the coping skills I have had to develop in > order to try and mask the fact that I am Sensory SUPERWOMAN!!!!! <GRIN> > > Jean > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 Malisa, Your comments caught my attention about the twitching during loud noise. Is it mostly in your limbs? Or does it happen all over? My daughter is nearly 6 and has severe CNS dysfunction due to mito. Her neuro has commented that she appears to have a variety of movement disorders, the most noticable is chorea (little dancing, twitchy movements of her hands and feet). I also started to notice about a year or so ago that her limbs would get twitchy, they would sort of twitch and jerk ever so gently, but really prevented her from using them in any purposeful way. Last winter, I discovered she was not getting enough minerals in her diet from restricted calories, as well as her seizure med causes her to dump calcium. I added a cal/mag/zn supplement to her diet and noticed those twitches virtually disappeared. Recently, her school had been writing home in her book, concerned about twitching movements they were seeing and if it was a seizure. Since I was not seeing this at home, I told them it was possible she was becoming a little overstimulated from the activity in the classroom. This thought was confirmed when I saw her get twitchy after starting up therapy again. Once or twice, I remember her limbs being very twitchy after a long day, and she calmed down after her nightly massage. I just take those movements as a sign that her CNS has been overloaded a bit. Ear plugs might be something to try for you too, the next time you go to an event that will be loud. e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 Malisa, Your comments caught my attention about the twitching during loud noise. Is it mostly in your limbs? Or does it happen all over? My daughter is nearly 6 and has severe CNS dysfunction due to mito. Her neuro has commented that she appears to have a variety of movement disorders, the most noticable is chorea (little dancing, twitchy movements of her hands and feet). I also started to notice about a year or so ago that her limbs would get twitchy, they would sort of twitch and jerk ever so gently, but really prevented her from using them in any purposeful way. Last winter, I discovered she was not getting enough minerals in her diet from restricted calories, as well as her seizure med causes her to dump calcium. I added a cal/mag/zn supplement to her diet and noticed those twitches virtually disappeared. Recently, her school had been writing home in her book, concerned about twitching movements they were seeing and if it was a seizure. Since I was not seeing this at home, I told them it was possible she was becoming a little overstimulated from the activity in the classroom. This thought was confirmed when I saw her get twitchy after starting up therapy again. Once or twice, I remember her limbs being very twitchy after a long day, and she calmed down after her nightly massage. I just take those movements as a sign that her CNS has been overloaded a bit. Ear plugs might be something to try for you too, the next time you go to an event that will be loud. e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 Malisa, Your comments caught my attention about the twitching during loud noise. Is it mostly in your limbs? Or does it happen all over? My daughter is nearly 6 and has severe CNS dysfunction due to mito. Her neuro has commented that she appears to have a variety of movement disorders, the most noticable is chorea (little dancing, twitchy movements of her hands and feet). I also started to notice about a year or so ago that her limbs would get twitchy, they would sort of twitch and jerk ever so gently, but really prevented her from using them in any purposeful way. Last winter, I discovered she was not getting enough minerals in her diet from restricted calories, as well as her seizure med causes her to dump calcium. I added a cal/mag/zn supplement to her diet and noticed those twitches virtually disappeared. Recently, her school had been writing home in her book, concerned about twitching movements they were seeing and if it was a seizure. Since I was not seeing this at home, I told them it was possible she was becoming a little overstimulated from the activity in the classroom. This thought was confirmed when I saw her get twitchy after starting up therapy again. Once or twice, I remember her limbs being very twitchy after a long day, and she calmed down after her nightly massage. I just take those movements as a sign that her CNS has been overloaded a bit. Ear plugs might be something to try for you too, the next time you go to an event that will be loud. e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 , Is Leah nonverbal? I think this was something you discussed with the group before, right? It is possible that these outbursts and crying is communication to Leah. She may be connecting the behaviour to getting what she wants/needs, and the heightened episodes at school may be a response to the increased competition for attention. It may be possible Leah is frustrated with herself because she can't speak her wishes, but she knows the other kids can. If she is nonverbal, have you tried using some sort of picture system with Leah? I started real simple with Chelsea. Simple and few photographs to choose from. I found a picture of a happy and sad baby and used those for yes and no and she responded very well. I hope you can find some solutions! e, Chelsea's mom (nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 , Is Leah nonverbal? I think this was something you discussed with the group before, right? It is possible that these outbursts and crying is communication to Leah. She may be connecting the behaviour to getting what she wants/needs, and the heightened episodes at school may be a response to the increased competition for attention. It may be possible Leah is frustrated with herself because she can't speak her wishes, but she knows the other kids can. If she is nonverbal, have you tried using some sort of picture system with Leah? I started real simple with Chelsea. Simple and few photographs to choose from. I found a picture of a happy and sad baby and used those for yes and no and she responded very well. I hope you can find some solutions! e, Chelsea's mom (nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 , Is Leah nonverbal? I think this was something you discussed with the group before, right? It is possible that these outbursts and crying is communication to Leah. She may be connecting the behaviour to getting what she wants/needs, and the heightened episodes at school may be a response to the increased competition for attention. It may be possible Leah is frustrated with herself because she can't speak her wishes, but she knows the other kids can. If she is nonverbal, have you tried using some sort of picture system with Leah? I started real simple with Chelsea. Simple and few photographs to choose from. I found a picture of a happy and sad baby and used those for yes and no and she responded very well. I hope you can find some solutions! e, Chelsea's mom (nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 Hi e: Yes, Leah is nonverbal. She has gotten very, very good at pointing with her index finger. Very direct, too. Such as when I come in at the end of the day to pick her up she will immediately point to where the coats are because the kids are getting their coats on. And then she will point to her kidkart because she knows she needs to be put in that to go out the door. I have printed out your input because we are trying to get the teachers to work with Leah and figure out some way to calm her down. But some times Leah goes over the top so quickly with these crying spells. But may be they should have some pictures ready to see if she will even look at them. And to top it off the other kids are holding their ears and saying can't you make her stop and of course some of them are saying it loudly so that will probably set her off even more. So that is why I'm writing to the group to get any help in this matter at all. Yours has been a good one. She does work with pictures. And some times she just will suddenly do this out of the blue and not sure why. Thanks for the input. Will pass this suggestion on to the teachers again. I've mentioned to them that this is probably her way of communicating and it is probably pretty frustrating for her to tell us what she wants. Nerenhausen mom to Leah jayvelde@... wrote: > , Is Leah nonverbal? I think this was something you discussed with the > group before, right? It is possible that these outbursts and crying is > communication to Leah. She may be connecting the behaviour to getting what > she wants/needs, and the heightened episodes at school may be a response to > the increased competition for attention. It may be possible Leah is > frustrated with herself because she can't speak her wishes, but she knows the > other kids can. > If she is nonverbal, have you tried using some sort of picture system with > Leah? I started real simple with Chelsea. Simple and few photographs to > choose from. I found a picture of a happy and sad baby and used those for yes > and no and she responded very well. I hope you can find some solutions! > > e, Chelsea's mom (nonspecific mito) > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 Hi e: Yes, Leah is nonverbal. She has gotten very, very good at pointing with her index finger. Very direct, too. Such as when I come in at the end of the day to pick her up she will immediately point to where the coats are because the kids are getting their coats on. And then she will point to her kidkart because she knows she needs to be put in that to go out the door. I have printed out your input because we are trying to get the teachers to work with Leah and figure out some way to calm her down. But some times Leah goes over the top so quickly with these crying spells. But may be they should have some pictures ready to see if she will even look at them. And to top it off the other kids are holding their ears and saying can't you make her stop and of course some of them are saying it loudly so that will probably set her off even more. So that is why I'm writing to the group to get any help in this matter at all. Yours has been a good one. She does work with pictures. And some times she just will suddenly do this out of the blue and not sure why. Thanks for the input. Will pass this suggestion on to the teachers again. I've mentioned to them that this is probably her way of communicating and it is probably pretty frustrating for her to tell us what she wants. Nerenhausen mom to Leah jayvelde@... wrote: > , Is Leah nonverbal? I think this was something you discussed with the > group before, right? It is possible that these outbursts and crying is > communication to Leah. She may be connecting the behaviour to getting what > she wants/needs, and the heightened episodes at school may be a response to > the increased competition for attention. It may be possible Leah is > frustrated with herself because she can't speak her wishes, but she knows the > other kids can. > If she is nonverbal, have you tried using some sort of picture system with > Leah? I started real simple with Chelsea. Simple and few photographs to > choose from. I found a picture of a happy and sad baby and used those for yes > and no and she responded very well. I hope you can find some solutions! > > e, Chelsea's mom (nonspecific mito) > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 Leah, I agree with the picture symbols. I purchased 2 valuable things with Lily's SSI money. First was the " Boardmaker " computer program. All school districts should have it, but for us Lily only saw the Speech Therapist 3 x's /year (don't get me started!!) so the logistics of getting the symbol signs to us when we needed them, was difficult. Bought it myself. Started with 2 symbols and ended up with a large " vocabulary " . Most important for your present situation was the " you need to relax " picture. One week of SOLID-consistent,quick reponse, got " rid " of Lily's wild behavior. I found that the Special Ed fols were moving too slow for Lily. With access to the program, I could print daily, the signs that were pertinent to Lily and our day to day. By " charting " her response and use we were able to collect enough data to qualify her to receive a Dynavox! Then she died. Or, I'd have one of those to do something with. 2nd purchase was a " Talkpad " from Attainment Company. It' is an easy to use, large picture, voice output communication system for $159.00!!! Can;t beat the price and the quality is excellent. They are on the web at www.attainmentcompany.com click on Family resources. I would be willing to " loan " you both Lily's Talkpad and her booklet of images (A large 3 ring binder/folder full of printed laminated images) and/or the computer CD if you are interested. Write me off list, if interested. salclerkpinetwn@... ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 Leah, I agree with the picture symbols. I purchased 2 valuable things with Lily's SSI money. First was the " Boardmaker " computer program. All school districts should have it, but for us Lily only saw the Speech Therapist 3 x's /year (don't get me started!!) so the logistics of getting the symbol signs to us when we needed them, was difficult. Bought it myself. Started with 2 symbols and ended up with a large " vocabulary " . Most important for your present situation was the " you need to relax " picture. One week of SOLID-consistent,quick reponse, got " rid " of Lily's wild behavior. I found that the Special Ed fols were moving too slow for Lily. With access to the program, I could print daily, the signs that were pertinent to Lily and our day to day. By " charting " her response and use we were able to collect enough data to qualify her to receive a Dynavox! Then she died. Or, I'd have one of those to do something with. 2nd purchase was a " Talkpad " from Attainment Company. It' is an easy to use, large picture, voice output communication system for $159.00!!! Can;t beat the price and the quality is excellent. They are on the web at www.attainmentcompany.com click on Family resources. I would be willing to " loan " you both Lily's Talkpad and her booklet of images (A large 3 ring binder/folder full of printed laminated images) and/or the computer CD if you are interested. Write me off list, if interested. salclerkpinetwn@... ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2003 Report Share Posted February 12, 2003 Sorry for the delay in responding ... kinda feelin' yucky! Yes .... I was a teacher of the deaf (I guess I still am, just no longer in the saddle!). With "super senses", especially when fatigued (yes, I KNOW that can be all the time!) or under stress ... for me everything magnifies. Some have talked of using earplugs .... but, whereas that MIGHT help, I am inclined to think that the sound will also become a tactile force as well. You know the old "feel the music in the seat of your pants" that happens in a church with wooden pews. Sound waves carry through objects as well as through the air. I find the best answer for me is to find a quiet place, preferable with dimmed light until the edge is off the "super sense"! Am I MAKING sense here? It sounds to me like Leah is having to put out more energy than she can manufacture ..... so her energy deficit is increasing. Ultimately this is most likely to have a downhill snowball effect. My question for you .... you must judge the appropriateness and the "fittablility" of the programme for Leah .... but does the school have a "time-out" room, or a quiet room like a nurse's room .... somewhere where Leah can go to desensitize. For sure, if "super senses" is her problem, she will be alive inside and unable to concentrate because of her "buzzing"!!! It is hard to explain ... hope you are understanding! Sometimes to make headway in education, we have to take different paths ..... or face the reality that our goals may be unrealistic. Not sure if this applies, but I thought I would mention it in passing. Perhaps your Individual Education Plan should include a "one-on-one" aide so that Leah can have supervision for her de-sensitizing time-out. This MUST NOT be seen as a punishment issue .... it must be considered as an essential part of her education programme. It may be that part of this time out, Leah has a regenerating nap! Also .... there has been discussion on this board in the past about programmes specifically for de-sensitizing .... such as stroking the skin with different textures. You might want to talk to your OT about starting a programme with this as a goal and write it into the IEP. My feeling is, though, that at 4 + years old, Leah is still a baby ... and perhaps school is all the formality she can handle for now. Leah also sounds like a very normal 4 year old when she wants things NOW .... and better YESTERDAY!!! Hey .... that's the granny in me talking now! You know .... because she has a different set of abilities from her age group .... and ESPECIALLY since her problem is ENERGY production, it could be that reducing the challenge may be what will make her flourish! I know, I haven't answered your question directly, .... but hopefully I have given you some ideas from Leah's point of view. Hug for you! Jean Sorensen wrote: So Jean: Would you say that may be moving her to the morning program may be benefical for her or could she still be having these moments then, too? Is this a progression of the disease? She had some of these issues last year, but more this year. And it's more at school than at home. She is impatient at home when she can't do some thing right away; like take a bath if she hears the tub filling up with water for her. She starts to cry and then doesn't really listen to us when we use short sentences to explain what is happening. It's like she is falling a part like a toddler. Which is where she may be at cognitive age wise. She will be 5 the end of April. How can I help the teachers when she gets like this? There are only two of them in the room and other times the therapists are there working with Leah, too when this happens. I'm just not sure which way to go here and trying to understand these issues and help the school out, too without changing our routine, too much. Thanks, if I remember I thought you did some thing as a teacher at one point. I believe I will keep Leah in the afternoon. But am willing to try a couple of weeks of this morning routine. It would seem that they could get an understanding in a couple of weeks instead the two months that they want. Am I out of line in suggesting that? Nerenhausen mom to Leah Shepherd wrote: > A number of adults with Mito complain not only of sensitivity to sound > but also to smell, taste, vision and touch. In other words, their > sensory systems are heightened. > > I have a great deal of trouble concentrating on ANYTHING if there is > sound in the background such as a radio or TV. Likewise if there are > things moving or colourful I cannot concentrate on any other sensory > stimulus. > > If something is moving to the touch ..... such as a foot thumping on the > floor .... or rough to the touch such as a pebbled pavement .... my > instinct is to move away. I like the feel of smooth texture though. > > I like to use my computer at night with the lights out .... because I > can focus better on the screen and not be distracted by things moving in > my peripheral vision. > > I have been told it is autonomic dysfunction. This would go along, > then, with my sensitivity to heat and cold. > > I gather it also goes along with proprioception .... i have trouble > relating where my body is in space. When I am going downstairs, I have > trouble knowing when my foot will touch the floor .... truly weird! So > ..... when no one is looking I face the stairs when I come down them so I > can use my toe to touch the steps! In public I allow everyone to pass > me and proceed SLOWLY! > > If there is an odour around .... I will smell it. Ask me to tell you > what spices are in something .... I am rarely wrong! > > So ... all this personal information, just to let you know that what > your child may be experiencing is autonomic dysfunction, which is yet > another of the areas Mito affects. > > What is most interesting is the coping skills I have had to develop in > order to try and mask the fact that I am Sensory SUPERWOMAN!!!!! <GRIN> > > Jean > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2003 Report Share Posted February 12, 2003 Sorry for the delay in responding ... kinda feelin' yucky! Yes .... I was a teacher of the deaf (I guess I still am, just no longer in the saddle!). With "super senses", especially when fatigued (yes, I KNOW that can be all the time!) or under stress ... for me everything magnifies. Some have talked of using earplugs .... but, whereas that MIGHT help, I am inclined to think that the sound will also become a tactile force as well. You know the old "feel the music in the seat of your pants" that happens in a church with wooden pews. Sound waves carry through objects as well as through the air. I find the best answer for me is to find a quiet place, preferable with dimmed light until the edge is off the "super sense"! Am I MAKING sense here? It sounds to me like Leah is having to put out more energy than she can manufacture ..... so her energy deficit is increasing. Ultimately this is most likely to have a downhill snowball effect. My question for you .... you must judge the appropriateness and the "fittablility" of the programme for Leah .... but does the school have a "time-out" room, or a quiet room like a nurse's room .... somewhere where Leah can go to desensitize. For sure, if "super senses" is her problem, she will be alive inside and unable to concentrate because of her "buzzing"!!! It is hard to explain ... hope you are understanding! Sometimes to make headway in education, we have to take different paths ..... or face the reality that our goals may be unrealistic. Not sure if this applies, but I thought I would mention it in passing. Perhaps your Individual Education Plan should include a "one-on-one" aide so that Leah can have supervision for her de-sensitizing time-out. This MUST NOT be seen as a punishment issue .... it must be considered as an essential part of her education programme. It may be that part of this time out, Leah has a regenerating nap! Also .... there has been discussion on this board in the past about programmes specifically for de-sensitizing .... such as stroking the skin with different textures. You might want to talk to your OT about starting a programme with this as a goal and write it into the IEP. My feeling is, though, that at 4 + years old, Leah is still a baby ... and perhaps school is all the formality she can handle for now. Leah also sounds like a very normal 4 year old when she wants things NOW .... and better YESTERDAY!!! Hey .... that's the granny in me talking now! You know .... because she has a different set of abilities from her age group .... and ESPECIALLY since her problem is ENERGY production, it could be that reducing the challenge may be what will make her flourish! I know, I haven't answered your question directly, .... but hopefully I have given you some ideas from Leah's point of view. Hug for you! Jean Sorensen wrote: So Jean: Would you say that may be moving her to the morning program may be benefical for her or could she still be having these moments then, too? Is this a progression of the disease? She had some of these issues last year, but more this year. And it's more at school than at home. She is impatient at home when she can't do some thing right away; like take a bath if she hears the tub filling up with water for her. She starts to cry and then doesn't really listen to us when we use short sentences to explain what is happening. It's like she is falling a part like a toddler. Which is where she may be at cognitive age wise. She will be 5 the end of April. How can I help the teachers when she gets like this? There are only two of them in the room and other times the therapists are there working with Leah, too when this happens. I'm just not sure which way to go here and trying to understand these issues and help the school out, too without changing our routine, too much. Thanks, if I remember I thought you did some thing as a teacher at one point. I believe I will keep Leah in the afternoon. But am willing to try a couple of weeks of this morning routine. It would seem that they could get an understanding in a couple of weeks instead the two months that they want. Am I out of line in suggesting that? Nerenhausen mom to Leah Shepherd wrote: > A number of adults with Mito complain not only of sensitivity to sound > but also to smell, taste, vision and touch. In other words, their > sensory systems are heightened. > > I have a great deal of trouble concentrating on ANYTHING if there is > sound in the background such as a radio or TV. Likewise if there are > things moving or colourful I cannot concentrate on any other sensory > stimulus. > > If something is moving to the touch ..... such as a foot thumping on the > floor .... or rough to the touch such as a pebbled pavement .... my > instinct is to move away. I like the feel of smooth texture though. > > I like to use my computer at night with the lights out .... because I > can focus better on the screen and not be distracted by things moving in > my peripheral vision. > > I have been told it is autonomic dysfunction. This would go along, > then, with my sensitivity to heat and cold. > > I gather it also goes along with proprioception .... i have trouble > relating where my body is in space. When I am going downstairs, I have > trouble knowing when my foot will touch the floor .... truly weird! So > ..... when no one is looking I face the stairs when I come down them so I > can use my toe to touch the steps! In public I allow everyone to pass > me and proceed SLOWLY! > > If there is an odour around .... I will smell it. Ask me to tell you > what spices are in something .... I am rarely wrong! > > So ... all this personal information, just to let you know that what > your child may be experiencing is autonomic dysfunction, which is yet > another of the areas Mito affects. > > What is most interesting is the coping skills I have had to develop in > order to try and mask the fact that I am Sensory SUPERWOMAN!!!!! <GRIN> > > Jean > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2003 Report Share Posted February 12, 2003 Sorry for the delay in responding ... kinda feelin' yucky! Yes .... I was a teacher of the deaf (I guess I still am, just no longer in the saddle!). With "super senses", especially when fatigued (yes, I KNOW that can be all the time!) or under stress ... for me everything magnifies. Some have talked of using earplugs .... but, whereas that MIGHT help, I am inclined to think that the sound will also become a tactile force as well. You know the old "feel the music in the seat of your pants" that happens in a church with wooden pews. Sound waves carry through objects as well as through the air. I find the best answer for me is to find a quiet place, preferable with dimmed light until the edge is off the "super sense"! Am I MAKING sense here? It sounds to me like Leah is having to put out more energy than she can manufacture ..... so her energy deficit is increasing. Ultimately this is most likely to have a downhill snowball effect. My question for you .... you must judge the appropriateness and the "fittablility" of the programme for Leah .... but does the school have a "time-out" room, or a quiet room like a nurse's room .... somewhere where Leah can go to desensitize. For sure, if "super senses" is her problem, she will be alive inside and unable to concentrate because of her "buzzing"!!! It is hard to explain ... hope you are understanding! Sometimes to make headway in education, we have to take different paths ..... or face the reality that our goals may be unrealistic. Not sure if this applies, but I thought I would mention it in passing. Perhaps your Individual Education Plan should include a "one-on-one" aide so that Leah can have supervision for her de-sensitizing time-out. This MUST NOT be seen as a punishment issue .... it must be considered as an essential part of her education programme. It may be that part of this time out, Leah has a regenerating nap! Also .... there has been discussion on this board in the past about programmes specifically for de-sensitizing .... such as stroking the skin with different textures. You might want to talk to your OT about starting a programme with this as a goal and write it into the IEP. My feeling is, though, that at 4 + years old, Leah is still a baby ... and perhaps school is all the formality she can handle for now. Leah also sounds like a very normal 4 year old when she wants things NOW .... and better YESTERDAY!!! Hey .... that's the granny in me talking now! You know .... because she has a different set of abilities from her age group .... and ESPECIALLY since her problem is ENERGY production, it could be that reducing the challenge may be what will make her flourish! I know, I haven't answered your question directly, .... but hopefully I have given you some ideas from Leah's point of view. Hug for you! Jean Sorensen wrote: So Jean: Would you say that may be moving her to the morning program may be benefical for her or could she still be having these moments then, too? Is this a progression of the disease? She had some of these issues last year, but more this year. And it's more at school than at home. She is impatient at home when she can't do some thing right away; like take a bath if she hears the tub filling up with water for her. She starts to cry and then doesn't really listen to us when we use short sentences to explain what is happening. It's like she is falling a part like a toddler. Which is where she may be at cognitive age wise. She will be 5 the end of April. How can I help the teachers when she gets like this? There are only two of them in the room and other times the therapists are there working with Leah, too when this happens. I'm just not sure which way to go here and trying to understand these issues and help the school out, too without changing our routine, too much. Thanks, if I remember I thought you did some thing as a teacher at one point. I believe I will keep Leah in the afternoon. But am willing to try a couple of weeks of this morning routine. It would seem that they could get an understanding in a couple of weeks instead the two months that they want. Am I out of line in suggesting that? Nerenhausen mom to Leah Shepherd wrote: > A number of adults with Mito complain not only of sensitivity to sound > but also to smell, taste, vision and touch. In other words, their > sensory systems are heightened. > > I have a great deal of trouble concentrating on ANYTHING if there is > sound in the background such as a radio or TV. Likewise if there are > things moving or colourful I cannot concentrate on any other sensory > stimulus. > > If something is moving to the touch ..... such as a foot thumping on the > floor .... or rough to the touch such as a pebbled pavement .... my > instinct is to move away. I like the feel of smooth texture though. > > I like to use my computer at night with the lights out .... because I > can focus better on the screen and not be distracted by things moving in > my peripheral vision. > > I have been told it is autonomic dysfunction. This would go along, > then, with my sensitivity to heat and cold. > > I gather it also goes along with proprioception .... i have trouble > relating where my body is in space. When I am going downstairs, I have > trouble knowing when my foot will touch the floor .... truly weird! So > ..... when no one is looking I face the stairs when I come down them so I > can use my toe to touch the steps! In public I allow everyone to pass > me and proceed SLOWLY! > > If there is an odour around .... I will smell it. Ask me to tell you > what spices are in something .... I am rarely wrong! > > So ... all this personal information, just to let you know that what > your child may be experiencing is autonomic dysfunction, which is yet > another of the areas Mito affects. > > What is most interesting is the coping skills I have had to develop in > order to try and mask the fact that I am Sensory SUPERWOMAN!!!!! <GRIN> > > Jean > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2003 Report Share Posted February 12, 2003 Malisa; Yes .... I have my body overreact to sound ... and touch ... and smell .... and visual stimulus. I have never had an MRI .... but any kind of motor running (especially if it causes vibration) makes me feel like I cannot concentrate on anything else. Jean malilibear@... wrote: In a message dated 2/9/03 4:34:45 AM Eastern Standard Time, Mito writes: A number of adults with Mito complain not only of sensitivity to sound but also to smell, taste, vision and touch. In other words, their sensory systems are heightened. Very interesting. I am 25 yrs old and am being suspected of having mito. I have a lot of dysautonomic symptoms, as well. When I don't feel good I have noticed that when I am in places with a lot of sudden loud noises such as fireworks, that my body is super sensitive to the noises. I almost feel overwhelmed by the amount of noise and my body will even start twitching and having little muscle jerks when this happens. When I had my MRI last year the same thing happened with the noise that the machine made. Do any of you/ your children respond this way to MRI's? My doctors had never really heard of that sort of response before. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2003 Report Share Posted February 12, 2003 Hi Cara; I mean things moving around me ... really moving! Also bright colours .... things happening on the TV screen. Sometimes I sit in front of the TV "watching" the TV ..... hahahah .... I couldn't tell you what has happened because the moving pictures so catch my attention that what's happening eludes me! You describe stationery things starting to move in the periphery .... and I have had that happen quite often, especially when I am tired. Jean And Escalators ..... UGH! I HATE them! I have a REAL problem with knowing when to step onto the moving step and admit to being afraid that I will get sucked into the machinery!!!! I never thought I would share that one!!! <grin> Elevators .... welllllll .... I hang on as if my life depended on it to the rail because I am claustrophobic or at least that is the best way I know to describe the sensory feelings I have especially with the changing of height motion! Its not REAL fear .... it is the "position in space" thing again. Jean "C. Waller" wrote: when you write "I like to use my computer at night with the lights out .... because I can focus better on the screen and not be distracted by things moving in my peripheral vision." do you mean that things that are moving in you peripheral vision (like people or TV or clock pendulum, etc.) bother you or that things in your peripheral vision appear to move when they should be stationary (or is it stationery?) i think you mean the first, but i am curious as often the second happens to me, and I believe my child has this happen too thanks! and Hooray for elevators over escalators! escalators are a problem cara Quote Link to comment Share on other sites More sharing options...
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