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Desperate mom needs advice!!!
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<blockquote data-quote="susiestar" data-source="post: 721301" data-attributes="member: 1233"><p>I would find a children's hospital and insist on a developmental pediatrician and a neuropsychologist working together. You need a strong team approach, I think. You may have to build it yourself, but you seem like a strong mom. Someone who can eventually get her way. </p><p></p><p>I urge you to create a Parent Report. It is a report that has all the info about your son in one place. You write it so that you have everything in one place. Warrior Moms who were on this site long before I came her created the outline. It was one of the most powerful tools I had when fighting for the help my son needed. You can find the outline by clicking on the link in my signature at the bottom of this post. </p><p></p><p>Don't try to write the report in one sitting. Work on it in chunks. I always kept a photo of my child at the beginning of each section. That way if I gave a doctor a section to read, he had a photo of the child he was reading about. I kept copies of the report with me when I went to see a doctor so that I could let them have a copy for their files. Having a photo makes the information more personal,according to some study I read. It seemed logical that doctors could get patients confused if all they did was read charts without anything to distinguish the patients from each other except names. I wanted my son to be as memorable to the doctors as he was to me. Photos helped with that. </p><p></p><p>It is possible that more than one thing is going on with your son. While you are trying to get a firm diagnosis, treating what you see is important. What is being done to help while a diagnosis is being figured out? At a minimum he needs therapy for sensory integration disorder. He probably could use some other types of help, and anything you can to provide interventions early is excellent. </p><p></p><p>I always figured it didn't much matter what they called my son's problems. It was how they fixed them that mattered. They could say he had Ham Sandwich Disease and it would be fine with me as long as they made it better and returned him to the sweet boy I had the first few years of his life. You should have heard his doctor laugh at me when I said that! Only I wasn't joking. </p><p></p><p>Sure a name helps. It gives you a feeling that you are not alone, that other people are dealing with the same thing. It lets you have a road map to treatment. It tells you what to look up when you want to understand what is going on. Only for most of us the first couple of diagnoses are incorrect. Not because the doctors are idiots (well, some of them are, but that is beside the point!). It is because the patients are children who are still growing and because diagnosis is not an exact science. </p><p></p><p>If I were you I would start with learning more about sensory integration disorder if you don't already know a lot about it. If you haven't read The Out of Sync Child by Kranowitz, it is excellent. Then buy a copy of The Out of Sync Child Has Fun, also by Kranowitz, and do the activities that your son enjoys. Why? Because the ones he enjoys are the ones he actually needs for therapy!!! It is good for his brain to do those things!! How often do you get to stop and do something for therapy with you child and have that therapy truly be fun? My family wore out several copies of the book. I swear the kids in our neighborhood had some kind of sixth sense tied to that book because every time I got it out, every kid in the neighborhood showed up in my yard. All ages, not just the ones my kids' ages. We loved it. </p><p></p><p>If the Occupational Therapist (OT) you are working with hasn't shown you brushing therapy, ask about it. It helps the body process sensory input in a more normal way. It uses a gentle brush, on the skin or over clothing, in a specific pattern over the body, followed by gentle joint compression. You must be taught this by an Occupational Therapist (OT) or you can cause harm. Once you are taught, it seems incredibly simple. The amazing thing is that it is proven to rewire the brain, to create new pathways for the brain to handle input from the senses. No medication is used, nothing that is harsh or would harm a child. The effects are astounding. </p><p></p><p>I know about sensory integration disorder because I have it. It really sounds like your son has it to some degree. I say this because he seems to need the loud volume and to be able to control his environment. The world can be difficult if you have sensory issues because it is always too. Too what? Too quiet, or too loud. Too bright or too dim. Food is too salty or not salty enough. One of my big problems is texture. I cannot stand many fabric textures. The new fabrics that are used for sports clothing? I cannot even pick them up to put them in the laundry. They literally make me shake if I touch them. They are horrible to me. If my clothes itch, there is no way I can wear them. I cannot get used to the itch, or forget about it. It bothers me every second of every minute that the clothes are on. It is torture. Lucky for me, I have a mom who had to wear itchy clothing as a child. She swore her kids wouldn't have to, and she is an incredible clothing designer. She made most of my clothing as a child, and it never ever itched. </p><p></p><p>Kids do well when they can. For some reason, your son can't do well right now. It is up to you to get everyone to figure out why. Sensory issues are probably a big part of his problems. My youngest child has sensory integration disorder. Several doctors told me that it is on the mildest end of the autism scale. Not a surprise given the amount of very high function autistic people in my family. Or people with strong autistic traits (not enough autism to be diagnosed, but enough for people to notice it.) It took a few years, but eventually we got him to the point that he manages his sensory needs without anyone even realizing they exist. </p><p></p><p>One thing that might help with his volume problem is a social story. You can look up what they are online. Just google social story. You could then find one about being too loud. Or make one with Thomas the Tank Engine helping another train learn to be quieter for some reason. Maybe so the other kids in school could learn? It wouldn't be hard to print out some clip art of Thomas from online and make a book. </p><p></p><p>Just a few ideas.</p></blockquote><p></p>
[QUOTE="susiestar, post: 721301, member: 1233"] I would find a children's hospital and insist on a developmental pediatrician and a neuropsychologist working together. You need a strong team approach, I think. You may have to build it yourself, but you seem like a strong mom. Someone who can eventually get her way. I urge you to create a Parent Report. It is a report that has all the info about your son in one place. You write it so that you have everything in one place. Warrior Moms who were on this site long before I came her created the outline. It was one of the most powerful tools I had when fighting for the help my son needed. You can find the outline by clicking on the link in my signature at the bottom of this post. Don't try to write the report in one sitting. Work on it in chunks. I always kept a photo of my child at the beginning of each section. That way if I gave a doctor a section to read, he had a photo of the child he was reading about. I kept copies of the report with me when I went to see a doctor so that I could let them have a copy for their files. Having a photo makes the information more personal,according to some study I read. It seemed logical that doctors could get patients confused if all they did was read charts without anything to distinguish the patients from each other except names. I wanted my son to be as memorable to the doctors as he was to me. Photos helped with that. It is possible that more than one thing is going on with your son. While you are trying to get a firm diagnosis, treating what you see is important. What is being done to help while a diagnosis is being figured out? At a minimum he needs therapy for sensory integration disorder. He probably could use some other types of help, and anything you can to provide interventions early is excellent. I always figured it didn't much matter what they called my son's problems. It was how they fixed them that mattered. They could say he had Ham Sandwich Disease and it would be fine with me as long as they made it better and returned him to the sweet boy I had the first few years of his life. You should have heard his doctor laugh at me when I said that! Only I wasn't joking. Sure a name helps. It gives you a feeling that you are not alone, that other people are dealing with the same thing. It lets you have a road map to treatment. It tells you what to look up when you want to understand what is going on. Only for most of us the first couple of diagnoses are incorrect. Not because the doctors are idiots (well, some of them are, but that is beside the point!). It is because the patients are children who are still growing and because diagnosis is not an exact science. If I were you I would start with learning more about sensory integration disorder if you don't already know a lot about it. If you haven't read The Out of Sync Child by Kranowitz, it is excellent. Then buy a copy of The Out of Sync Child Has Fun, also by Kranowitz, and do the activities that your son enjoys. Why? Because the ones he enjoys are the ones he actually needs for therapy!!! It is good for his brain to do those things!! How often do you get to stop and do something for therapy with you child and have that therapy truly be fun? My family wore out several copies of the book. I swear the kids in our neighborhood had some kind of sixth sense tied to that book because every time I got it out, every kid in the neighborhood showed up in my yard. All ages, not just the ones my kids' ages. We loved it. If the Occupational Therapist (OT) you are working with hasn't shown you brushing therapy, ask about it. It helps the body process sensory input in a more normal way. It uses a gentle brush, on the skin or over clothing, in a specific pattern over the body, followed by gentle joint compression. You must be taught this by an Occupational Therapist (OT) or you can cause harm. Once you are taught, it seems incredibly simple. The amazing thing is that it is proven to rewire the brain, to create new pathways for the brain to handle input from the senses. No medication is used, nothing that is harsh or would harm a child. The effects are astounding. I know about sensory integration disorder because I have it. It really sounds like your son has it to some degree. I say this because he seems to need the loud volume and to be able to control his environment. The world can be difficult if you have sensory issues because it is always too. Too what? Too quiet, or too loud. Too bright or too dim. Food is too salty or not salty enough. One of my big problems is texture. I cannot stand many fabric textures. The new fabrics that are used for sports clothing? I cannot even pick them up to put them in the laundry. They literally make me shake if I touch them. They are horrible to me. If my clothes itch, there is no way I can wear them. I cannot get used to the itch, or forget about it. It bothers me every second of every minute that the clothes are on. It is torture. Lucky for me, I have a mom who had to wear itchy clothing as a child. She swore her kids wouldn't have to, and she is an incredible clothing designer. She made most of my clothing as a child, and it never ever itched. Kids do well when they can. For some reason, your son can't do well right now. It is up to you to get everyone to figure out why. Sensory issues are probably a big part of his problems. My youngest child has sensory integration disorder. Several doctors told me that it is on the mildest end of the autism scale. Not a surprise given the amount of very high function autistic people in my family. Or people with strong autistic traits (not enough autism to be diagnosed, but enough for people to notice it.) It took a few years, but eventually we got him to the point that he manages his sensory needs without anyone even realizing they exist. One thing that might help with his volume problem is a social story. You can look up what they are online. Just google social story. You could then find one about being too loud. Or make one with Thomas the Tank Engine helping another train learn to be quieter for some reason. Maybe so the other kids in school could learn? It wouldn't be hard to print out some clip art of Thomas from online and make a book. Just a few ideas. [/QUOTE]
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