Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 Hi , Thanks for the Spinal Gallant idea. I love what you are doing! TEll me more about the degree you are developing. Is this a master's or doct. level degree? Where are you doing it through? you should be able to purchase the book through Svetlana's website- have you tried that yet? ON schools- I was able to get my school district participate in a study in which we identified kids making very slow or no gains in some academic area. We did reflex exercises that ed techs were trained and carried out for 12 weeks, provided data and results that showed they all made improvements from 20-80% in their goal areas. i am now permitted to do reflex integration in the district. Sometimes you have to start with data and concrete for administrators to understand- if you cna relate it to learning results in math or reading, even better. I also talk a lot about the reflexes people already know to make is seem more familiar to them. Good luck! Cammack in Maine From: mysmnth <mysmnth@...>Subject: Hi! I'm new. Date: Thursday, September 4, 2008, 9:59 PM Hello everyone! I am and let me introduce myself. I am aformer teacher and am designing a degree in neuroscience education. I do a lot with the reflexes. I am digging deeper and deeper intomethods. I want to purchase the Mustagova reflex book- any help??? :)Many of the other authors and programs are so protective of offeringtheir ideas, that I began making up my own and it cured my daughter'senuresis. Throw anything my way! I am working with 2 older childrenwith birth trauma/learning disabilities and I developed movements towork them through the primitive reflexes. A neuro wellness centerasked for my resume today and I may finally be able to help morechildren in need. I am in Ohio. Most schools are just toooverwhelmed and intimidated by this stuff. Looking forward tolearning and sharing! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 : Thanks so much for the example of ways to integrate the information we are all learning into the schools to help kids get the best starts to life that they can! I’m grateful that you’ve shared the specifics, as we are more apt to take a risk and approach someone when we’ve heard of someone else who’s done something with good results. GOOD FOR YOU! Joni Polehna, Stillwater, MN From: [mailto: ] On Behalf Of Cammack Sent: Sunday, September 07, 2008 1:48 AM Subject: Re: Hi! I'm new. Hi , Thanks for the Spinal Gallant idea. I love what you are doing! TEll me more about the degree you are developing. Is this a master's or doct. level degree? Where are you doing it through? you should be able to purchase the book through Svetlana's website- have you tried that yet? ON schools- I was able to get my school district participate in a study in which we identified kids making very slow or no gains in some academic area. We did reflex exercises that ed techs were trained and carried out for 12 weeks, provided data and results that showed they all made improvements from 20-80% in their goal areas. i am now permitted to do reflex integration in the district. Sometimes you have to start with data and concrete for administrators to understand- if you cna relate it to learning results in math or reading, even better. I also talk a lot about the reflexes people already know to make is seem more familiar to them. Good luck! Cammack in Maine From: mysmnth <mysmnth@...> Subject: Hi! I'm new. Date: Thursday, September 4, 2008, 9:59 PM Hello everyone! I am and let me introduce myself. I am a former teacher and am designing a degree in neuroscience education. I do a lot with the reflexes. I am digging deeper and deeper into methods. I want to purchase the Mustagova reflex book- any help??? Many of the other authors and programs are so protective of offering their ideas, that I began making up my own and it cured my daughter's enuresis. Throw anything my way! I am working with 2 older children with birth trauma/learning disabilities and I developed movements to work them through the primitive reflexes. A neuro wellness center asked for my resume today and I may finally be able to help more children in need. I am in Ohio. Most schools are just too overwhelmed and intimidated by this stuff. Looking forward to learning and sharing! --- Get FREE High Speed Internet from USFamily.Net! --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 -Thanks for sharing the district idea. I have always wanted to get in and work with some special teachers who could grasp this. They are hard to find. I have a little one at home right now and I am in a new district. I am working with some children who will be my cornerstone of confidence for me to walk in and know I can treat reading issues. I would like to also have a program down in my mind that I am confident in. What grade did you do your study with? I thought what was being offered to teachers was a waste of money and family time for those who were beyond some basic experience. I took one class from my mentor and I knew I wanted to be her grad assistant. She travels the country lecturing and I ended up convincing the teacher chair at State University to do neuroscience under an independent teacher program they had where you plug in your own expertise. I actually created my spinal galant exercise for my own daughter after being told by doctors that there was nothing I could do for her enuresis. Great talking to you! > > From: mysmnth <mysmnth@...> > Subject: Hi! I'm new. > > Date: Thursday, September 4, 2008, 9:59 PM > > > > > > > Hello everyone! I am and let me introduce myself. I am a > former teacher and am designing a degree in neuroscience education. > I do a lot with the reflexes. I am digging deeper and deeper into > methods. I want to purchase the Mustagova reflex book- any help??? > Many of the other authors and programs are so protective of offering > their ideas, that I began making up my own and it cured my daughter's > enuresis. Throw anything my way! I am working with 2 older children > with birth trauma/learning disabilities and I developed movements to > work them through the primitive reflexes. A neuro wellness center > asked for my resume today and I may finally be able to help more > children in need. I am in Ohio. Most schools are just too > overwhelmed and intimidated by this stuff. Looking forward to > learning and sharing! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Our study was for students K-5. I think 2-3 grades would be great to target. By that time children usually start to show their learning delays with very low reading levels. Often, at this age the kids are starting to become very motivated to change this for themselves because they start to see the gap widen between them and the other kids. If you target this type of group they will usually guide you- unfortunately, I can't tell you how many kids i meet that have great insight into their challenges but have never been given the credit to know that they might be the most knowledgeable about thier own bodies. If you give them this gift of listening, validating, and understanding- and bring the good intention to help them wiht what they identify as challenging- they will receive and make wonderful gains. If you are familiar with Brain Gym- the two together can be a wonderful tool for reading. I like to do the reflex work and really help children get into their bodies in a quiet space, and them transition to BG lazy 8s and alphabet 8s and then go into the reading lesson. Have confidence- you don't have to do this perfectly or understand it all at once- you simply need to have the best intentions, share what you know and listen- you will get the rest of the guidance you need in surprising places! My best of luck to you in making this swim upstream in public schools- it is not easy, but so many needed a life raft!!! From: mysmnth <mysmnth@...>Subject: Re: Hi! I'm new. Date: Monday, September 8, 2008, 8:50 AM -Thanks for sharing the district idea. I have always wantedto get in and work with some special teachers who could grasp this. They are hard to find. I have a little one at home right now and I amin a new district. I am working with some children who will be mycornerstone of confidence for me to walk in and know I can treatreading issues. I would like to also have a program down in my mindthat I am confident in. What grade did you do your study with? I thought what was being offered to teachers was a waste of money andfamily time for those who were beyond some basic experience. I tookone class from my mentor and I knew I wanted to be her grad assistant.She travels the country lecturing and I ended up convincing theteacher chair at State University to do neuroscience under anindependent teacher program they had where you plug in your ownexpertise. I actually created my spinal galant exercise for my owndaughter after being told by doctors that there was nothing I could dofor her enuresis. Great talking to you! > > From: mysmnth <mysmnth@... >> Subject: [childrenwithchalle nges] Hi! I'm new.> childrenwithchallen gesgroups (DOT) com> Date: Thursday, September 4, 2008, 9:59 PM> > > > > > > Hello everyone! I am and let me introduce myself. I am a> former teacher and am designing a degree in neuroscience education. > I do a lot with the reflexes. I am digging deeper and deeper into> methods. I want to purchase the Mustagova reflex book- any help??? > Many of the other authors and programs are so protective of offering> their ideas, that I began making up my own and it cured my daughter's> enuresis. Throw anything my way! I am working with 2 older children> with birth trauma/learning disabilities and I developed movements to> work them through the primitive reflexes. A neuro wellness center> asked for my resume today and I may finally be able to help more> children in need. I am in Ohio. Most schools are just too> overwhelmed and intimidated by this stuff. Looking forward to> learning and sharing!> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2010 Report Share Posted November 7, 2010 Welcome. Def go see a Pediatric Neurologist! Find a good one recommended by local moms of special needs kids! My CP/apraxia/Hydrocephalus daughter is 9yo and her Pediatrician made sure we started with a Ped Neurologist at less than one year old! The Ped Neuro will help you with transition to school districts and keeping track of the big picture and let you know which other specialists you should take your son to! It often takes a couple months to get an appointment with the good ones, so be ready and call soon! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2010 Report Share Posted November 7, 2010 I am curious who has decided to have your child receive therapy that is pretty much only appropriate for autism? ABA therapy if not appropriate has been found in numerous cases in this group alone (but all over of course) to be detrimental if not needed by the child. In addition the Hanen method while INCREDIBLE for a typical late talker child with a simple delay in speech -is ALSO not appropriate if your child has a diagnosis of say apraxia. How do I know that outside of being told by professionals outside of Hanen -I once spoke at a conference with one of the professionals from Hanen and she told me the same thing. And the one type of therapy he for SURE needs -classic speech therapy??? (insert cricket sound here) So in other words your EI program is just throwing a bunch of junk at your child hoping this or that may help as clearly they suspect " he's either just a late talker with a simple delay in speech or autistic because clearly there are no other reason " or translate that to they are clueless as to why he isn't talking yet and perhaps not aware that some of what they are doing may be detrimental at worst and is inappropriate for your child at best? Brilliant! It is not unusual for a " late talker " child to have less eye contact due to frustration or because the child is working hard to try to communicate or because the child is hoping by not looking at you, you won't try to get him or her to talk. Let me give you an example. You are sitting in class and didn't read the chapter you were supposed to for homework and the teacher asks " What was the name of the man that ...blah blah blah " What do you do? You look down or at your book and try desperately to avoid eye contact with that teacher because you KNOW you don't know the answer. Same thing on another way with late talker children. Developmental delays typically are both receptive and expressive -but typically if it's an impairment it is not receptive or cognitive -it's expressive...not knowing this can lead to secondary to the diagnosis frustration and behavioral issues; and worse damage to the precious self esteem. It is SO important that you don't count on just the early intervention system alone to work with your child. I mean here they are throwing all kinds of therapy at your child without knowing the reason for the delay? No diagnosis? That's just nuts in my opinion! There are many reasons for a child to have a delay. I'm sure you have already had a speech and hearing evaluation -but none of us are qualified to know there are no other issues when our children are 3. I can show you numerous emails from me when my son was your son's age and I too wrote that he was " perfectly normal except he can't talk yet " But again a speech impairment doesn't mean there are any receptive or cognitive issues so a child knows what is expected of them -and very little is for a 3 year old. It's as they age that things get harder and they start to break down. My son Tanner ended up diagnosed with apraxia both oral and verbal, hypotonia, motor deficits in the body to name a few. He was qualified for services for all he was diagnosed with -but I had to advocate. If I didn't -no doubt AT ALL that Tanner would not have been mainstreamed since kindergarten. I would highly recommend the following. 1. If you have not yet read The Late Talker book -you can start reading it online- go to Google Books and search. That will be a great resource. If you can afford the ten dollars it will be worth getting a copy as there are sample letters etc. in there that will help you advocate and the free online version has parts cut out. I co authored that book with neurodevelopmental pediatrician Dr. Marilyn Agin and international journalist Malcolm Nicholl who also co authored the book The LCP Solution with Dr. Stordy. 2. I put reading the book first because if you do have insurance that book will help -and I have more to help in this area if you need help in securing therapy through insurance. 3. A private evaluation with the following professionals that have knowledge about VARIOUS multifaceted communication impairments....NOT just autism- preferably those that are recommended by others (and know you plan on this later -but just seeing you if you can make it sooner!!): speech language pathologist (if you were asking -YES!!) NeuroMD (pediatric neurologist or developmental pediatrician) occupational therapist if the neuro and/or SLP suspect sensory issues (again you may not be aware of the signs as you are a newbie) 4. Find local support either in person or online. Let us know what state or country you are from and perhaps we can help. Who told you to put your child on a GFCF diet? I am NOT a huge fan of the " try it " diet as I had to be raised on such a diet and our goal to me anyway as parents is to try to help our children overcome in a way that they can blend and that adds the least amount of stress to their life -no less ours. Yes there is an increase of children and adults that have to be on a GFCF diet but goodness knows don't go that route unless you HAVE to. I know what it's like to HAVE to grow up on such a diet as I was diagnosed celiac as a baby - and it's not fun to go to a friend's house for their birthday and not be able to have a piece of cake. Not be able to share lunch with your friends. Food is social for any age. I am way older and still remember how horrible that diet was...even though it saved my life. Imagine how upset I would be to find out that I was put on such a diet and didn't have to be!!! Again this is why you want a diagnosis with various private professionals -the docs if you see a good one today will be able to test your child for various things that are common in this group. As far as nutritional we have found in this group for years the importance of a 'healthy' diet that included essential fatty acids -or the fish oils. In fact we have an entire chapter in The Late Talker devoted to this. In the past year we've learned as a group the importance of all of the essential amino acids and nutrients from whole food sources- which is where NV comes in (you can read this page here http://pursuitofresearch.org/science.html ) The same world renowned medical doctors including Dr. Deepak Chopra (who you may have seen on Oprah or CNN) http://pursuitofresearch.org/advisors.html that formulated the 100 percent natural water soluble NV -which is 100 percent made of food that is all tested free of heavy metals, herbicides and pesticides (and yes is GFCF (!!) as well as sodium, fat, caffeine, stimulant, synthetic, genetically altered free) have just come out with a new product which in a short time I see if also something all here should explore with their children as well based on the ingredients as well as the reports I just got from all 3 of my son Tanner's teachers about his changes in the " past few days " which NONE of them know I just put him on Accell and still don't http://nutraeasy.com/wholefoodtherapy/products/accell/ About the inappropriate sign -it could be also two different reasons other than the sign being inappropriate 1. He was hungry and didn't want to read again -he wanted to eat 2. He has motor planning deficits in the body -perfect example of apraxia! The good news is that you are out searching for your child which tells me that he's going to be just fine. We just have to get you on the right track for what to do next now- and some of the above will be a start to that! There is SO much hope for a verbal and mainstreamed future! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2010 Report Share Posted November 9, 2010 Hi , Do you have any archive links regarding why ABA is not a good fit for a child with Apraxia? Currently, my son is doing 1 hour of ABA 4 days a week in his pre-school program. He didn't start there but they felt they needed to address his impulsiveness and inappropriate in seat behavior in his preschool class. They also work with him on his communication book and device. I have not notice any negative impact on him but he only started ABA in September. Just would like to read more about this so I am as informed as I can be. Thanks, From: [mailto: ] On Behalf Of kiddietalk Sent: Sunday, November 07, 2010 1:15 PM Cc: nmjoyce64@... Subject: [ ] Re: Hi! I'm New. I am curious who has decided to have your child receive therapy that is pretty much only appropriate for autism? ABA therapy if not appropriate has been found in numerous cases in this group alone (but all over of course) to be detrimental if not needed by the child. In addition the Hanen method while INCREDIBLE for a typical late talker child with a simple delay in speech -is ALSO not appropriate if your child has a diagnosis of say apraxia. How do I know that outside of being told by professionals outside of Hanen -I once spoke at a conference with one of the professionals from Hanen and she told me the same thing. And the one type of therapy he for SURE needs -classic speech therapy??? (insert cricket sound here) So in other words your EI program is just throwing a bunch of junk at your child hoping this or that may help as clearly they suspect " he's either just a late talker with a simple delay in speech or autistic because clearly there are no other reason " or translate that to they are clueless as to why he isn't talking yet and perhaps not aware that some of what they are doing may be detrimental at worst and is inappropriate for your child at best? Brilliant! It is not unusual for a " late talker " child to have less eye contact due to frustration or because the child is working hard to try to communicate or because the child is hoping by not looking at you, you won't try to get him or her to talk. Let me give you an example. You are sitting in class and didn't read the chapter you were supposed to for homework and the teacher asks " What was the name of the man that ...blah blah blah " What do you do? You look down or at your book and try desperately to avoid eye contact with that teacher because you KNOW you don't know the answer. Same thing on another way with late talker children. Developmental delays typically are both receptive and expressive -but typically if it's an impairment it is not receptive or cognitive -it's expressive...not knowing this can lead to secondary to the diagnosis frustration and behavioral issues; and worse damage to the precious self esteem. It is SO important that you don't count on just the early intervention system alone to work with your child. I mean here they are throwing all kinds of therapy at your child without knowing the reason for the delay? No diagnosis? That's just nuts in my opinion! There are many reasons for a child to have a delay. I'm sure you have already had a speech and hearing evaluation -but none of us are qualified to know there are no other issues when our children are 3. I can show you numerous emails from me when my son was your son's age and I too wrote that he was " perfectly normal except he can't talk yet " But again a speech impairment doesn't mean there are any receptive or cognitive issues so a child knows what is expected of them -and very little is for a 3 year old. It's as they age that things get harder and they start to break down. My son Tanner ended up diagnosed with apraxia both oral and verbal, hypotonia, motor deficits in the body to name a few. He was qualified for services for all he was diagnosed with -but I had to advocate. If I didn't -no doubt AT ALL that Tanner would not have been mainstreamed since kindergarten. I would highly recommend the following. 1. If you have not yet read The Late Talker book -you can start reading it online- go to Google Books and search. That will be a great resource. If you can afford the ten dollars it will be worth getting a copy as there are sample letters etc. in there that will help you advocate and the free online version has parts cut out. I co authored that book with neurodevelopmental pediatrician Dr. Marilyn Agin and international journalist Malcolm Nicholl who also co authored the book The LCP Solution with Dr. Stordy. 2. I put reading the book first because if you do have insurance that book will help -and I have more to help in this area if you need help in securing therapy through insurance. 3. A private evaluation with the following professionals that have knowledge about VARIOUS multifaceted communication impairments....NOT just autism- preferably those that are recommended by others (and know you plan on this later -but just seeing you if you can make it sooner!!): speech language pathologist (if you were asking -YES!!) NeuroMD (pediatric neurologist or developmental pediatrician) occupational therapist if the neuro and/or SLP suspect sensory issues (again you may not be aware of the signs as you are a newbie) 4. Find local support either in person or online. Let us know what state or country you are from and perhaps we can help. Who told you to put your child on a GFCF diet? I am NOT a huge fan of the " try it " diet as I had to be raised on such a diet and our goal to me anyway as parents is to try to help our children overcome in a way that they can blend and that adds the least amount of stress to their life -no less ours. Yes there is an increase of children and adults that have to be on a GFCF diet but goodness knows don't go that route unless you HAVE to. I know what it's like to HAVE to grow up on such a diet as I was diagnosed celiac as a baby - and it's not fun to go to a friend's house for their birthday and not be able to have a piece of cake. Not be able to share lunch with your friends. Food is social for any age. I am way older and still remember how horrible that diet was...even though it saved my life. Imagine how upset I would be to find out that I was put on such a diet and didn't have to be!!! Again this is why you want a diagnosis with various private professionals -the docs if you see a good one today will be able to test your child for various things that are common in this group. As far as nutritional we have found in this group for years the importance of a 'healthy' diet that included essential fatty acids -or the fish oils. In fact we have an entire chapter in The Late Talker devoted to this. In the past year we've learned as a group the importance of all of the essential amino acids and nutrients from whole food sources- which is where NV comes in (you can read this page here http://pursuitofresearch.org/science.html ) The same world renowned medical doctors including Dr. Deepak Chopra (who you may have seen on Oprah or CNN) http://pursuitofresearch.org/advisors.html that formulated the 100 percent natural water soluble NV -which is 100 percent made of food that is all tested free of heavy metals, herbicides and pesticides (and yes is GFCF (!!) as well as sodium, fat, caffeine, stimulant, synthetic, genetically altered free) have ! just come out with a new product which in a short time I see if also something all here should explore with their children as well based on the ingredients as well as the reports I just got from all 3 of my son Tanner's teachers about his changes in the " past few days " which NONE of them know I just put him on Accell and still don't http://nutraeasy.com/wholefoodtherapy/products/accell/ About the inappropriate sign -it could be also two different reasons other than the sign being inappropriate 1. He was hungry and didn't want to read again -he wanted to eat 2. He has motor planning deficits in the body -perfect example of apraxia! The good news is that you are out searching for your child which tells me that he's going to be just fine. We just have to get you on the right track for what to do next now- and some of the above will be a start to that! There is SO much hope for a verbal and mainstreamed future! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2010 Report Share Posted November 9, 2010 Hi , not lisa, but was just wondering about the " impulsiveness and inappropriate seat behaviour "  Could it be sensory based at all? My son (now 11) still uses a therapy ball instead of a chair in class. When he was in pre-school, I bought him an inflatable cushion to sit on instead of the floor. He really needs this input in order to stay on task better. He really is quite a sensory kid still. Some things he's sensory defensive, other things sensory seeking. The " out of sync child " book has some great strategies for sensory needs and I still refer to it to this day. His greatest deficit still is proprioceptive, which is why we use the ball and weighted vests ect. (he has very little tactile needs) I also did the Hanen course. It was a great course......I just had to wait about 5 years to use the information! Not a great thing to use if your child is anything other than a typical late talker. All that time to learn it and the only thing i really use is the OWL (observe, wait, listen) because now he actually has words. I think your best bet would be to get him diagnosed and plan from there. Either way though...fish oils are great! sandy ________________________________ From: Joyce <erin.joyce.2@...> Sent: Tue, November 9, 2010 10:58:51 AM Subject: RE: [ ] Re: Hi! I'm New.  Hi , Do you have any archive links regarding why ABA is not a good fit for a child with Apraxia? Currently, my son is doing 1 hour of ABA 4 days a week in his pre-school program. He didn't start there but they felt they needed to address his impulsiveness and inappropriate in seat behavior in his preschool class. They also work with him on his communication book and device. I have not notice any negative impact on him but he only started ABA in September. Just would like to read more about this so I am as informed as I can be. Thanks, From: [mailto: ] On Behalf Of kiddietalk Sent: Sunday, November 07, 2010 1:15 PM Cc: nmjoyce64@... Subject: [ ] Re: Hi! I'm New. I am curious who has decided to have your child receive therapy that is pretty much only appropriate for autism? ABA therapy if not appropriate has been found in numerous cases in this group alone (but all over of course) to be detrimental if not needed by the child. In addition the Hanen method while INCREDIBLE for a typical late talker child with a simple delay in speech -is ALSO not appropriate if your child has a diagnosis of say apraxia. How do I know that outside of being told by professionals outside of Hanen -I once spoke at a conference with one of the professionals from Hanen and she told me the same thing. And the one type of therapy he for SURE needs -classic speech therapy??? (insert cricket sound here) So in other words your EI program is just throwing a bunch of junk at your child hoping this or that may help as clearly they suspect " he's either just a late talker with a simple delay in speech or autistic because clearly there are no other reason " or translate that to they are clueless as to why he isn't talking yet and perhaps not aware that some of what they are doing may be detrimental at worst and is inappropriate for your child at best? Brilliant! It is not unusual for a " late talker " child to have less eye contact due to frustration or because the child is working hard to try to communicate or because the child is hoping by not looking at you, you won't try to get him or her to talk. Let me give you an example. You are sitting in class and didn't read the chapter you were supposed to for homework and the teacher asks " What was the name of the man that ...blah blah blah " What do you do? You look down or at your book and try desperately to avoid eye contact with that teacher because you KNOW you don't know the answer. Same thing on another way with late talker children. Developmental delays typically are both receptive and expressive -but typically if it's an impairment it is not receptive or cognitive -it's expressive...not knowing this can lead to secondary to the diagnosis frustration and behavioral issues; and worse damage to the precious self esteem. It is SO important that you don't count on just the early intervention system alone to work with your child. I mean here they are throwing all kinds of therapy at your child without knowing the reason for the delay? No diagnosis? That's just nuts in my opinion! There are many reasons for a child to have a delay. I'm sure you have already had a speech and hearing evaluation -but none of us are qualified to know there are no other issues when our children are 3. I can show you numerous emails from me when my son was your son's age and I too wrote that he was " perfectly normal except he can't talk yet " But again a speech impairment doesn't mean there are any receptive or cognitive issues so a child knows what is expected of them -and very little is for a 3 year old. It's as they age that things get harder and they start to break down. My son Tanner ended up diagnosed with apraxia both oral and verbal, hypotonia, motor deficits in the body to name a few. He was qualified for services for all he was diagnosed with -but I had to advocate. If I didn't -no doubt AT ALL that Tanner would not have been mainstreamed since kindergarten. I would highly recommend the following. 1. If you have not yet read The Late Talker book -you can start reading it online- go to Google Books and search. That will be a great resource. If you can afford the ten dollars it will be worth getting a copy as there are sample letters etc. in there that will help you advocate and the free online version has parts cut out. I co authored that book with neurodevelopmental pediatrician Dr. Marilyn Agin and international journalist Malcolm Nicholl who also co authored the book The LCP Solution with Dr. Stordy. 2. I put reading the book first because if you do have insurance that book will help -and I have more to help in this area if you need help in securing therapy through insurance. 3. A private evaluation with the following professionals that have knowledge about VARIOUS multifaceted communication impairments....NOT just autism- preferably those that are recommended by others (and know you plan on this later -but just seeing you if you can make it sooner!!): speech language pathologist (if you were asking -YES!!) NeuroMD (pediatric neurologist or developmental pediatrician) occupational therapist if the neuro and/or SLP suspect sensory issues (again you may not be aware of the signs as you are a newbie) 4. Find local support either in person or online. Let us know what state or country you are from and perhaps we can help. Who told you to put your child on a GFCF diet? I am NOT a huge fan of the " try it " diet as I had to be raised on such a diet and our goal to me anyway as parents is to try to help our children overcome in a way that they can blend and that adds the least amount of stress to their life -no less ours. Yes there is an increase of children and adults that have to be on a GFCF diet but goodness knows don't go that route unless you HAVE to. I know what it's like to HAVE to grow up on such a diet as I was diagnosed celiac as a baby - and it's not fun to go to a friend's house for their birthday and not be able to have a piece of cake. Not be able to share lunch with your friends. Food is social for any age. I am way older and still remember how horrible that diet was...even though it saved my life. Imagine how upset I would be to find out that I was put on such a diet and didn't have to be!!! Again this is why you want a diagnosis with various private professionals -the docs if you see a good one today will be able to test your child for various things that are common in this group. As far as nutritional we have found in this group for years the importance of a 'healthy' diet that included essential fatty acids -or the fish oils. In fact we have an entire chapter in The Late Talker devoted to this. In the past year we've learned as a group the importance of all of the essential amino acids and nutrients from whole food sources- which is where NV comes in (you can read this page here http://pursuitofresearch.org/science.html ) The same world renowned medical doctors including Dr. Deepak Chopra (who you may have seen on Oprah or CNN) http://pursuitofresearch.org/advisors.html that formulated the 100 percent natural water soluble NV -which is 100 percent made of food that is all tested free of heavy metals, herbicides and pesticides (and yes is GFCF (!!) as well as sodium, fat, caffeine, stimulant, synthetic, genetically altered free) have ! just come out with a new product which in a short time I see if also something all here should explore with their children as well based on the ingredients as well as the reports I just got from all 3 of my son Tanner's teachers about his changes in the " past few days " which NONE of them know I just put him on Accell and still don't http://nutraeasy.com/wholefoodtherapy/products/accell/ About the inappropriate sign -it could be also two different reasons other than the sign being inappropriate 1. He was hungry and didn't want to read again -he wanted to eat 2. He has motor planning deficits in the body -perfect example of apraxia! The good news is that you are out searching for your child which tells me that he's going to be just fine. We just have to get you on the right track for what to do next now- and some of the above will be a start to that! There is SO much hope for a verbal and mainstreamed future! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2010 Report Share Posted November 9, 2010 Hi ! You asked for some archives -to be honest don't have time to read all of the following but bottom line is check with an outside source for ABA -it's not appropriate to address a motor planning impairment. And if the ABA therapist thinks it is -ask him or her if ABA would be appropriate to address stuttering (another motor planning impairment) I've heard from PhDs in speech as well as ABA therapists that are parents of this group it is not at all appropriate to address any aspect of apraxia and can be detrimental. We have stories in the archives (not sure if some are below) of members with apraxic children who developed horrific secondary behavioral problems due to ABA, and at least one case of post traumatic stress -and from this group alone one member from NJ filmed the ABA therapist " working " with their apraxic son (paper bag over the head, pinching, hair pulling) and that therapist was sent to jail for abuse. The therapist's defense? Those are all methods used in ABA therapy. (judge clearly either didn't care or didn't buy it -she went to jail) Electro shock therapy may have been the start of ABA -it's back in vogue in some areas to the horror of much of the civilized world...and the main question isn't why is ABA therapy wrong for apraxia as that's obvious -but what is an " appropriate " way for a preschool child to sit in a chair? What positive or negative methods are they incorporating to make your preschool child sit there so he doesn't have " impulsiveness and inappropriate in seat behavior in his preschool class " They are aware that he's a preschool child right? We also have in the archives one preschool child was forced to sit in a chair with a Rifton therapy chair- it was deemed abusive in that case too. You do want to know what's going on- we've seen it all in this group (locked in dark bathrooms etc.) Of course those cases are rare -but the " impulsiveness and inappropriate in seat behavior in his preschool class " wording in itself is raising the red flag. Bottom line is ABA can create and in this group has been known to create secondary negative behavioral or psychological issues due to frustration- and can make a child that LOVES therapy and LOVES their speech therapist -start to run away in tears even when the " good " SLP tried to work with that child. Be very careful -it's clear you are dealing with the clueless and while you may never see them again if your child receives out of district placement next month or in a few months or next year -your child is your child forever -and while we are not trained how to advocate -follow your gut- and yes- look into the following archives and on the web. Also I may have it below but Jeanne Buesser's one son is apraxic and one is autistic and she's many times explained how different therapies are effective for each child -and how ABA would not help her apraxic child to talk and would just frustrate him. That's coming from a parent that is dealing again with both apraxia and autism in two different children. (and by the way it's her birthday today!!! Happy Birthday Jeanne!!) The following archive is a bunch of archives -doesn't end till you get to " end of archives " Re: Why can ABA be harmful for those that don't need it (was support group) Hi -long archive message on this. Again not that ABA is " bad " but it's the only therapy I know that you need to be careful with- and that can be inappropriate. (others can be a waste of time and/or money -but the others don't come with a caution label...and no -it doesn't literally come with a caution label...you know what - all this is probably already covered in the incredibly long archive below!) But just to make this clear once again -for those who have children that need ABA/respond to it ...your child probably isn't " just " apraxic. (some have both autism and apraxia) We have a member in this group (from NJ) with an apraxic child who sued that child's ABA therapist for abuse, and won...and that's not the only story. Think that's story is below but if not -you can archive it. ABA in some cases can stand for " always be around " (during therapy) And yes -we have members here who are parents..and wonderful ABA therapists...but again ABA may not always be appropriate. " kiddietalk " kiddietalk@... Sat Sep 16, 2006 8:11 am Re: How is ABA harmful? > I keep reading that ABA can be harmful for apraxic kids. Could someone > please elaborate? Since your message is so short -I thought I'd put the question on top since my answer is so long. (good if you need to pull out anything from here to help -much is in one place) It's hard to know where to start so I'll just start here: There's a huge difference in a child that needs speech therapy that may include strengthening, motor planning techniques etc. to 'teach' them how to talk, and using either positive (or God forbid) negative behavioral techniques (rewards, punishments) to 'encourage' speech. What if such child already 'desperately wants to talk...to the point of frustration -but just can't? What happens when you add strict behavioral methods to " get " them to talk? You risk creating secondary to the diagnosis psychological problems such as who developed post traumatic stress from ABA http://www.cherab.org/news/.html , damage to that child's self esteem, or at least even more severe frustration. Or check the archives -you may as one family from Jersey found -video tape a therapy session that puts that therapist in jail. (see aversive techniques below) This topic creates much stir because there are wonderful ABA therapists and for those children that require or need it, it has been a lifesaver. And then there are those who have children with autism and apraxia who have awesome therapists that use modified ABA with great results -but in those cases the ABA therapist is aware of the child's inabilities. Problem is that is not always the case...too many apraxic children are diagnosed with " PDD NOS " and provided ABA therapy as the way to get that child to talk when that approach is not appropriate and may be detrimental as I'll explain. I had my son Tanner pulled from his preschool placement and placed in out of district placement due to inappropriate behavioral techniques. Parents come to CHERAB all the time desperate for help on this topic. For example from just yesterday....(if anyone here is from Tennessee -or anywhere near there -please let me know because this parent is willing to drive, or even fly for help for her child. She has already contacted Dr. Agin after I provided her number, but perhaps someone here has someone in the meantime that is closer?) " I called the CHERUB number because I am getting desperate as we don't have a diagnosis, he is in EI (he's 3) but they are treating him behaviorally and acting like he is autistic when I know good and well that he isn't. He has been in a classroom for 3 weeks with all autistic kids and they have completely messed up his sensory diet so badly that we feel we are right back to where we were before we began OT. I kept him out of school and took him to a private co- treat today and he was practically catatonic and almost vomited while in the swing. I was horrified. Even his private speech therapist, who is the best in our area, is treating him as if he is autistic even though she admits that I could be right about my belief that he is apraxic with sensory integration issues. She also tells me she would treat him differently if he were diagnosed as such. Which is why I have to find an MD who knows about apraxia and is willing to look at other things besides ASD. So, just add me to the list of mothers who, for some reason, have to go through this hazing before finding what is right for our precious ones. " If this message horrifies you answer her here so she can read it. She is a new member that just joined, and she will probably answer you offlist -but I hope that she feels comfortable to speak about this here too. The more we talk about this -the more aware we all are -the less severe negative stories we'll hear about. Here are articles posted about another member here who's child's " therapist " is going to jail. We have to as a group feel free to discuss this here. We all know silence is NOT golden. For the good ABA therapists...and most important for the sake of the children -something has to be done about this! ~~~~~~~~~~~~~~~~start of archive Admitted Child Abuser to Be Sentenced Friday, June 2, for Abusing Dy " webewords " webewords@... Wed May 31, 2006 1:21 pm Admitted child abuser Zucker-Klein of 30 Vista Trail, Wayne, NJ, will be sentenced to jail for endangering the welfare of a child for abusing a dyspraxic, nonverbal child she was tutoring at his home in Westwood, NJ. Under the guise of " behaviorism, " she subjected him to poking with a pen, slapping on the head, yanking his head back by his hair, punching him, putting a bag over his head, among other things, for taking too long to answer (using an augmentive device) a question or for getting an answer wrong. The parents caught her on tape. The sentencing will be at 9 a.m. Friday, June 2, 2006, in the court of Judge Roma, 4th Floor, Bergen County Courthouse in Hackensack, NJ. Any sympathetic parent who is nearby may want to be there for support. This messages is posted by relatives of the victim, who wish to remain anonymous. I ask the several members who may know our email address to keep our names secret. " ~~~~~~~~~~~end of archive ===== Quote Link to comment Share on other sites More sharing options...
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