Post by Amy Lombardi on Apr 24, 2009 15:27:03 GMT -5
Subject: sensory intregration book the out-of-sync-child
Author: judy briggs
Feb 20th, 2009 - 9:57 AM
I have read alot of post about aggression and behavior and yes we have had alot of those same stories at our house and med changes and pleading for help from doctors my kids would pinch scratch bite scream all the same things.. But we got the most help from the OT at the Hospital Not the one at school we learned about Sensory Intregration and how the changes in sensory was causing alot of behaviors
we made some adaptions not med changes and got alot better results. One of my boys was sensory seeking so we tied toys to his wheelchair tray and the other hated all the input of sensory so we dressed him from head to toe to cut it down we give baby oil showers to put on invisible clothes to reduce input
use white noise a fan to help block out distracting noises all the others senses increase as the vision loss decreases and they are miserable try to find an ot that know about sensory issue to evaluate and help your kids at least its not another med and it could help alot also keep on top of constipation a side effect of many meds and painful you can find the out-of-sync child probally at your library and on the internet sensory intregration check list I know we had bad year and there will be bad times I just want to share what did work for us we had a hard time after the blindness came in the mornings because they can dream and in the dreams they can still see and do stuff they can't anymore and wake up blind and confused and angry it is hard but the more you understand what is going on in there world the more you can help them...
irena
Feb 21st, 2009 - 7:26 AM
Hello Judy , Do you mean this book?
www.comeunity.com/disability/sensory_integration/bksync.html
Sounds intereting. What do you mean exactly by a baby oil shower?
Judy Briggs
Feb 22nd, 2009 - 4:20 PM
one web site is www.out-of-sync-child.com it talks about the book, which you can probally get through the library too. and the other site with the sensory check list is www.sensory-processing-disorder.com the check list appears at the lower half of the page
what I mean by a baby oil shower is that when i finish his shower i cover him with baby oil and then rinse the extra off that way he has a layer of protection that helps him with his sensory input to reduce it we have had lots of behavior issues with mikey and he hated the shower and I want him to not only enjoy them but tolerate it so we can keep him clean and healhy so we put a stero in the bathroom and play his favorite cds and i shower him to the beat of the song and it got alot better because he is paying attention to the music and not all the stuff I am doing I shower him every morning and use music to get up and go and I shower him every night before bed with music that sings songs about bedtime that way hes apart of what is going on and it helps him know whats next he has alot of dementia at this point and every helps.
Judy Briggs
Feb 22nd, 2009 - 5:14 PM
Sensory Processing Disorder Checklist
Many of the symptoms listed in the following categories are common to that particular age group. Where more than a few symptoms are found in a child, we recommend you talk to your doctor or check the SPD Foundation's Treatment Directory for a professional experienced with treating Sensory Processing Disorder.*
Infant/ Toddler Checklist:
____ My infant/toddler has problems eating.
____ My infant/toddler refused to go to anyone but me.
____ My infant/toddler has trouble falling asleep or staying asleep
____ My infant/toddler is extremely irritable when I dress him/her; seems to be uncomfortable in clothes.
____ My infant/toddler rarely plays with toys, especially those requiring dexterity.
____ My infant/toddler has difficulty shifting focus from one object/activity to another.
____ My infant/toddler does not notice pain or is slow to respond when hurt.
____ My infant/toddler resists cuddling, arches back away from the person holding him.
____ My infant/toddler cannot calm self by sucking on a pacifier, looking at toys, or listening to my voice.
____ My infant/toddler has a "floppy" body, bumps into things and has poor balance.
____ My infant/toddler does little or no babbling, vocalizing.
____ My infant/toddler is easily startled.
____ My infant/toddler is extremely active and is constantly moving body/limbs or runs endlessly.
____ My infant/toddler seems to be delayed in crawling, standing, walking or running.
Pre-School Checklist:
____ My child has difficulty being toilet trained.
____ My child is overly sensitive to stimulation, overreacts to or does not like touch, noise, smells, etc.
____ My child is unaware of being touched/bumped unless done with extreme force/intensity.
____ My child has difficulty learning and/or avoids performing fine motor tasks such as using crayons and fasteners on clothing.
____ My child seems unsure how to move his/her body in space, is clumsy and awkward.
____ My child has difficulty learning new motor tasks.
____ My child is in constant motion.
____ My child gets in everyone else's space and/or touches everything around him.
____ My child has difficulty making friends (overly aggressive or passive/ withdrawn).
____ My child is intense, demanding or hard to calm and has difficulty with transitions.
____ My child has sudden mood changes and temper tantrums that are unexpected.
____ My child seems weak, slumps when sitting/standing; prefers sedentary activities.
____ It is hard to understand my child's speech.
____ My child does not seem to understand verbal instructions.
School Age:
___ My child is overly sensitive to stimulation, overreacts to or does not like touch, noise, smells, etc.
___ My child is easily distracted in the classroom, often out of his/her seat, fidgety.
___ My child is easily overwhelmed at the playground, during recess and in class.
___ My child is slow to perform tasks.
___ My child has difficulty performing or avoids fine motor tasks such as handwriting.
___ My child appears clumsy and stumbles often, slouches in chair.
___ My child craves rough housing, tackling/wrestling games.
___ My child is slow to learn new activities.
___ My child is in constant motion.
___ My child has difficulty learning new motor tasks and prefers sedentary activities.
___ My child has difficulty making friends (overly aggressive or passive/ withdrawn).
___ My child ïgets stuck' on tasks and has difficulty changing to another task.
___ My child confuses similar sounding words, misinterprets questions or requests.
___ My child has difficulty reading, especially aloud.
___ My child stumbles over words; speech lacks fluency, and rhythm is hesitant.
Adolescent/Adult:
___ I am over-sensitive to environmental stimulation: I do not like being touched.
___ I avoid visually stimulating environments and/or I am sensitive to sounds.
___ I often feel lethargic and slow in starting my day.
___ I often begin new tasks simultaneously and leave many of them uncompleted.
___ I use an inappropriate amount of force when handling objects.
___ I often bump into things or develop bruises that I cannot recall.
___ I have difficulty learning new motor tasks, or sequencing steps of a task.
___ I need physical activities to help me maintain my focus throughout the day.
___ I have difficulty staying focused at work and in meetings.
___ I misinterpret questions and requests, requiring more clarification than usual.
___ I have difficulty reading, especially aloud.
___ My speech lacks fluency, I stumble over words.
___ I must read material several times to absorb the content.
___ I have trouble forming thoughts and ideas in oral presentations.
*While this checklist can't diagnose a child with SPD, it can be a helpful guide to see if additional testing should be done. When filling out this checklist, think about the child's behavior during the past six months.
Barb from NY
Feb 23rd, 2009 - 7:55 PM
Hi Judy,
Two of my sons had Batten Disease, the juvenile form, and both have passed away--Jimmy at age 20 and Steven at age 24. I read with interest your post about your helpful experiences with occupational therapy services for your children. My children both recieved occupational therapy services and we found it to be helpul as well. We focused on fine motor activities and maintaining daily living skills for as long as they were able to continue to enjoy the activity and to continue without excess frustration. Using fun activities to engage the use of fine motor skills, such as tactile games, playing with textured puzzles, singing, listening to enjoyable tapes, recreational activities, such as adapting toys, etc. These activities also helped with feelings of competency, and being able to do something successfully helped the boys feel good about themselves. And it was just plain fun!
I never considered my children to have a sensory processing disorder per se, as in "sensory integration disorder" or as described in the "out of synch" child. When Jean Ayres conducted her research and proposed theory of sensory integration, the children she studied had nothing physically wrong with them--no medical diagnosis, no obvious disability or disorder. The theory was that based upon their "behaviors", the children were thought to have a "hidden" disability thought to be a brain impairment although no physical impairment, disease or abnormality was found. The theory is that something is going on with the brain although there was no evidence or indication of gross disease. I always considered my children to have a brain disease. Because of the degeneration of the brain and central nervous system and dementia process, the sensory issues were a result of the damage to the brain. My children touched everything, explored everything within reach, liked to feel and hold on to things, held their "their favorite toys", but I considered that to be a function of the blindness, and hey, they're kids, not because they were sensory seeking. I attached some toys to the wheelchair tray too,because it was easier to find the toy when it was dropped or misplaced. Later on in the disease, it became harder to identify things using the sense of touch. I also used calming music tapes of nature sounds, rain, classical music, ocean waves, etc. to help create a calm restful environment for sleep or to help calm down when agitated. Sometimes it helped, sometimes it didn't. I did not use actual "white noise" because of the sensory depravation aspect of that sound.
One of the hardest things for teachers and therapists to understand is that children with Batten Disease children were normal in development at one time. It is very difficult for a teacher to understand regression in a child. For example, when my son Jimmy was nine years old, he began to have speech services for the first time. The speech pathologist wanted to improve his articulation and improve his "delayed" speech akills. When tested, his speech was at a lower level of functioning than for his age, and he many times was incorrectly identified as having delayed speech. Jimmy's speech difficulty was actually secondary aphasia, not a speech delay. When any therapist or teacher works with our children it is important for them to know all about Batten Disease as a progressive degenerative brain disease and the effects of this disorder on the child. If the teacher or therapist is not asware of the underlying diagnosis or does not understand the diagnosis, there is a risk the child will be incorectly diagnosed due to test results or screenings or scores on testing. Whenever I received an evaluation or a diagnosis, I always made sure that it make sense to me given the Batten Disease diagnosis. I sooo remember going through tough times with my boys. I am thinking about you and your family and I hope things get better for you.
irena
Feb 24th, 2009 - 12:13 AM
I am always very intereted to read everything on this bulletin board and I totally agree that many professionals working with our children/young adults cant get to grips with regression. From what I have seen some children with Juvenile have an early sort of "autistic" phase and some dont get this at all or to the same degree.
I was interested in the title of the book as I have often described my daughter as being "out of sync" to the doctors when she has been in a manic phase . When there is sensory overload and she is so busy and restless there is little connection and everything seems to be too quick. I hope that makes sense?
With the progression of time , an increase in some medication to help calm ,not too many environmental changes , working with people who know her, all the comforts mentioned in the previous messages and a weekly massage called "Tactile stimulation" my daughter is more in sync with her surroundings . Tactile stimulation was talked about when I attended the first Batten disease Education conference in Sweden a few years ago. It is a gentle massage not vigorous and a parent there ( who has produced a book and DVD about her son , Thor's life) said how helpful it had been for him. I manage to find one young lady in the whole of the UK who is trained to do this massage and she has been coming for a few months now. Helena also has weekly music therapy and has done for 10 years now. We are fortunate that she can still attend a VI college and hopefully can attend ( as a day student) for another year. It is getting the balance right for your child.
Irena mother of Helena (21)
Author: judy briggs
Feb 20th, 2009 - 9:57 AM
I have read alot of post about aggression and behavior and yes we have had alot of those same stories at our house and med changes and pleading for help from doctors my kids would pinch scratch bite scream all the same things.. But we got the most help from the OT at the Hospital Not the one at school we learned about Sensory Intregration and how the changes in sensory was causing alot of behaviors
we made some adaptions not med changes and got alot better results. One of my boys was sensory seeking so we tied toys to his wheelchair tray and the other hated all the input of sensory so we dressed him from head to toe to cut it down we give baby oil showers to put on invisible clothes to reduce input
use white noise a fan to help block out distracting noises all the others senses increase as the vision loss decreases and they are miserable try to find an ot that know about sensory issue to evaluate and help your kids at least its not another med and it could help alot also keep on top of constipation a side effect of many meds and painful you can find the out-of-sync child probally at your library and on the internet sensory intregration check list I know we had bad year and there will be bad times I just want to share what did work for us we had a hard time after the blindness came in the mornings because they can dream and in the dreams they can still see and do stuff they can't anymore and wake up blind and confused and angry it is hard but the more you understand what is going on in there world the more you can help them...
irena
Feb 21st, 2009 - 7:26 AM
Hello Judy , Do you mean this book?
www.comeunity.com/disability/sensory_integration/bksync.html
Sounds intereting. What do you mean exactly by a baby oil shower?
Judy Briggs
Feb 22nd, 2009 - 4:20 PM
one web site is www.out-of-sync-child.com it talks about the book, which you can probally get through the library too. and the other site with the sensory check list is www.sensory-processing-disorder.com the check list appears at the lower half of the page
what I mean by a baby oil shower is that when i finish his shower i cover him with baby oil and then rinse the extra off that way he has a layer of protection that helps him with his sensory input to reduce it we have had lots of behavior issues with mikey and he hated the shower and I want him to not only enjoy them but tolerate it so we can keep him clean and healhy so we put a stero in the bathroom and play his favorite cds and i shower him to the beat of the song and it got alot better because he is paying attention to the music and not all the stuff I am doing I shower him every morning and use music to get up and go and I shower him every night before bed with music that sings songs about bedtime that way hes apart of what is going on and it helps him know whats next he has alot of dementia at this point and every helps.
Judy Briggs
Feb 22nd, 2009 - 5:14 PM
Sensory Processing Disorder Checklist
Many of the symptoms listed in the following categories are common to that particular age group. Where more than a few symptoms are found in a child, we recommend you talk to your doctor or check the SPD Foundation's Treatment Directory for a professional experienced with treating Sensory Processing Disorder.*
Infant/ Toddler Checklist:
____ My infant/toddler has problems eating.
____ My infant/toddler refused to go to anyone but me.
____ My infant/toddler has trouble falling asleep or staying asleep
____ My infant/toddler is extremely irritable when I dress him/her; seems to be uncomfortable in clothes.
____ My infant/toddler rarely plays with toys, especially those requiring dexterity.
____ My infant/toddler has difficulty shifting focus from one object/activity to another.
____ My infant/toddler does not notice pain or is slow to respond when hurt.
____ My infant/toddler resists cuddling, arches back away from the person holding him.
____ My infant/toddler cannot calm self by sucking on a pacifier, looking at toys, or listening to my voice.
____ My infant/toddler has a "floppy" body, bumps into things and has poor balance.
____ My infant/toddler does little or no babbling, vocalizing.
____ My infant/toddler is easily startled.
____ My infant/toddler is extremely active and is constantly moving body/limbs or runs endlessly.
____ My infant/toddler seems to be delayed in crawling, standing, walking or running.
Pre-School Checklist:
____ My child has difficulty being toilet trained.
____ My child is overly sensitive to stimulation, overreacts to or does not like touch, noise, smells, etc.
____ My child is unaware of being touched/bumped unless done with extreme force/intensity.
____ My child has difficulty learning and/or avoids performing fine motor tasks such as using crayons and fasteners on clothing.
____ My child seems unsure how to move his/her body in space, is clumsy and awkward.
____ My child has difficulty learning new motor tasks.
____ My child is in constant motion.
____ My child gets in everyone else's space and/or touches everything around him.
____ My child has difficulty making friends (overly aggressive or passive/ withdrawn).
____ My child is intense, demanding or hard to calm and has difficulty with transitions.
____ My child has sudden mood changes and temper tantrums that are unexpected.
____ My child seems weak, slumps when sitting/standing; prefers sedentary activities.
____ It is hard to understand my child's speech.
____ My child does not seem to understand verbal instructions.
School Age:
___ My child is overly sensitive to stimulation, overreacts to or does not like touch, noise, smells, etc.
___ My child is easily distracted in the classroom, often out of his/her seat, fidgety.
___ My child is easily overwhelmed at the playground, during recess and in class.
___ My child is slow to perform tasks.
___ My child has difficulty performing or avoids fine motor tasks such as handwriting.
___ My child appears clumsy and stumbles often, slouches in chair.
___ My child craves rough housing, tackling/wrestling games.
___ My child is slow to learn new activities.
___ My child is in constant motion.
___ My child has difficulty learning new motor tasks and prefers sedentary activities.
___ My child has difficulty making friends (overly aggressive or passive/ withdrawn).
___ My child ïgets stuck' on tasks and has difficulty changing to another task.
___ My child confuses similar sounding words, misinterprets questions or requests.
___ My child has difficulty reading, especially aloud.
___ My child stumbles over words; speech lacks fluency, and rhythm is hesitant.
Adolescent/Adult:
___ I am over-sensitive to environmental stimulation: I do not like being touched.
___ I avoid visually stimulating environments and/or I am sensitive to sounds.
___ I often feel lethargic and slow in starting my day.
___ I often begin new tasks simultaneously and leave many of them uncompleted.
___ I use an inappropriate amount of force when handling objects.
___ I often bump into things or develop bruises that I cannot recall.
___ I have difficulty learning new motor tasks, or sequencing steps of a task.
___ I need physical activities to help me maintain my focus throughout the day.
___ I have difficulty staying focused at work and in meetings.
___ I misinterpret questions and requests, requiring more clarification than usual.
___ I have difficulty reading, especially aloud.
___ My speech lacks fluency, I stumble over words.
___ I must read material several times to absorb the content.
___ I have trouble forming thoughts and ideas in oral presentations.
*While this checklist can't diagnose a child with SPD, it can be a helpful guide to see if additional testing should be done. When filling out this checklist, think about the child's behavior during the past six months.
Barb from NY
Feb 23rd, 2009 - 7:55 PM
Hi Judy,
Two of my sons had Batten Disease, the juvenile form, and both have passed away--Jimmy at age 20 and Steven at age 24. I read with interest your post about your helpful experiences with occupational therapy services for your children. My children both recieved occupational therapy services and we found it to be helpul as well. We focused on fine motor activities and maintaining daily living skills for as long as they were able to continue to enjoy the activity and to continue without excess frustration. Using fun activities to engage the use of fine motor skills, such as tactile games, playing with textured puzzles, singing, listening to enjoyable tapes, recreational activities, such as adapting toys, etc. These activities also helped with feelings of competency, and being able to do something successfully helped the boys feel good about themselves. And it was just plain fun!
I never considered my children to have a sensory processing disorder per se, as in "sensory integration disorder" or as described in the "out of synch" child. When Jean Ayres conducted her research and proposed theory of sensory integration, the children she studied had nothing physically wrong with them--no medical diagnosis, no obvious disability or disorder. The theory was that based upon their "behaviors", the children were thought to have a "hidden" disability thought to be a brain impairment although no physical impairment, disease or abnormality was found. The theory is that something is going on with the brain although there was no evidence or indication of gross disease. I always considered my children to have a brain disease. Because of the degeneration of the brain and central nervous system and dementia process, the sensory issues were a result of the damage to the brain. My children touched everything, explored everything within reach, liked to feel and hold on to things, held their "their favorite toys", but I considered that to be a function of the blindness, and hey, they're kids, not because they were sensory seeking. I attached some toys to the wheelchair tray too,because it was easier to find the toy when it was dropped or misplaced. Later on in the disease, it became harder to identify things using the sense of touch. I also used calming music tapes of nature sounds, rain, classical music, ocean waves, etc. to help create a calm restful environment for sleep or to help calm down when agitated. Sometimes it helped, sometimes it didn't. I did not use actual "white noise" because of the sensory depravation aspect of that sound.
One of the hardest things for teachers and therapists to understand is that children with Batten Disease children were normal in development at one time. It is very difficult for a teacher to understand regression in a child. For example, when my son Jimmy was nine years old, he began to have speech services for the first time. The speech pathologist wanted to improve his articulation and improve his "delayed" speech akills. When tested, his speech was at a lower level of functioning than for his age, and he many times was incorrectly identified as having delayed speech. Jimmy's speech difficulty was actually secondary aphasia, not a speech delay. When any therapist or teacher works with our children it is important for them to know all about Batten Disease as a progressive degenerative brain disease and the effects of this disorder on the child. If the teacher or therapist is not asware of the underlying diagnosis or does not understand the diagnosis, there is a risk the child will be incorectly diagnosed due to test results or screenings or scores on testing. Whenever I received an evaluation or a diagnosis, I always made sure that it make sense to me given the Batten Disease diagnosis. I sooo remember going through tough times with my boys. I am thinking about you and your family and I hope things get better for you.
irena
Feb 24th, 2009 - 12:13 AM
I am always very intereted to read everything on this bulletin board and I totally agree that many professionals working with our children/young adults cant get to grips with regression. From what I have seen some children with Juvenile have an early sort of "autistic" phase and some dont get this at all or to the same degree.
I was interested in the title of the book as I have often described my daughter as being "out of sync" to the doctors when she has been in a manic phase . When there is sensory overload and she is so busy and restless there is little connection and everything seems to be too quick. I hope that makes sense?
With the progression of time , an increase in some medication to help calm ,not too many environmental changes , working with people who know her, all the comforts mentioned in the previous messages and a weekly massage called "Tactile stimulation" my daughter is more in sync with her surroundings . Tactile stimulation was talked about when I attended the first Batten disease Education conference in Sweden a few years ago. It is a gentle massage not vigorous and a parent there ( who has produced a book and DVD about her son , Thor's life) said how helpful it had been for him. I manage to find one young lady in the whole of the UK who is trained to do this massage and she has been coming for a few months now. Helena also has weekly music therapy and has done for 10 years now. We are fortunate that she can still attend a VI college and hopefully can attend ( as a day student) for another year. It is getting the balance right for your child.
Irena mother of Helena (21)