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good day gone bad
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<blockquote data-quote="susiestar" data-source="post: 368418" data-attributes="member: 1233"><p>It is so hard to watch when our kids lose it around others. Knowing they will be teased, possibly for quite a long time, about behavior that they truly are incapable of controlling, is very very painful. I am so sorry that the second game went so badly.</p><p></p><p>I hope that you and difficult child and the family can work on not letting the meltdown ruin the memory of the triumphs of the first game. It is a hard thing to do, but being able to put the meltdown behind you and enjoy the rest of the day and the memory of the good things before the upset is very important. Otherwise it is really easy to let a meltdown that lasts an hour or less ruin and entire day. That adds up to weeks, months, even years. For quite a while I had to push my husband to work with me to write down positive things that happened every day so that we could both SEE that difficult child's problems were not "ruining" all of our lives. They caused a lot of stress, anger, and unhappiness, even fear, without a doubt. But if you lose sight of the good things you can lose sight of your goals and the stress will destroy every aspect of your life.</p><p></p><p>Getting a complete, thorough evaluation is the key to helping your son. You need to have testing done by either a neuropsychologist (therapist with special training in how the brain and behavior interact) or by a multi-disciplinary team. Many here feel that the neuropsychologist does better testing. There is a lot of variation, of course, but either way the testing should involve several sessions adding up to about 10-12 hours of time. You can find the experts at major university or children's hospitals. </p><p></p><p>We have had other members from your area, so maybe someone can PM the names of docs who helped them. We do not say names of docs/phosps etc... on the open forums. </p><p></p><p>Teaching hospitals can offer great services. Every resident/intern/whatever has their work reviewed and supervised by a teacher. You may actually get MORE help because they collaborate and you are not stuck with one person's perceptions and ideas. We worked with a major children's hospital when we lived in OH and overall had EXCELLENT service and results. We did get a couple of boneheads but we saw far more idiots in private practice or smaller hospitals. When we encountered someone who suggested or prescribed something that made no sense at the teaching hospital we could speak to someone who supervised them and figure out a plan of action. Docs at teaching hospitals are also much more likely to be up on the latest research. Private practice docs are more likely to be too busy to follow the latest research and to depend on info from pharmaceutical companies for their continuing education. The info presented by pharm co's is often very skewed in favor of whatever products are making the biggest profits for them. </p><p></p><p>One thing I really LIKE about teaching hospitals is that the docs are willing to share the reasons behind their suggestions far more than some other docs are. They are accustomed to explaining the why behind the diagnosis or rx or suggestion. They also are more willing to go back and correct mistakes, esp in things like the family history. Our history, like that of most difficult children, is quite complex. It is rare to not have several rather big misperceptions over things that have happened and what we have done to treat them. With docs who do not teach I find that IF they are willing to acknowledge the mistake they correct it on paper but not in their minds. They get stuck on what they remember from the initial interview and ignore or forget the correction, even if it makes a BIG difference in treatment. One doctor SWEARS that during a restraint I caused nerve damage in Wiz' left hand and that Wiz has had a LOT of therapy and medication to treat it. The reality is that Wiz caused nerve damage in MY left hand and I have had the treatment/medication for it. We stopped seeing him when he kept rx'ing phys therapy and braces for Wiz' left hand. I even showed him the tests from MY docs about the damage. So he decided we BOTH had damaged hands and that I am in denial about having caused long term harm to my child. The docs in the teaching hospitals seem more willing to accept that they make errors and to correct them. It is one reason I LIKE teaching hospitals. (And in a teaching hospital there are extra eyes on things so if a mistake is made there is a MUCH greater chance that someone will admit it, at least to you. Having had a HUGE error made in a critical area of my son's care by a doctor at a small hospital, I am well aware that you often are lucky to even LEARN about the error unless there are too many people around for it to be swept under the rug.)</p><p></p><p>There is usually a long waiting list to see a specialist. Three months is rather standard, at least in each hospital/practice we have encountered, and sometimes it takes even longer. If at all possible, get the wheels rolling to get an appointment with whomever you can find. If you find a doctor you like better later, you can always make an appointment with them and cancel the other one. Or see both to see which one you prefer. </p><p></p><p>I hope this makes sense. </p><p></p><p>One idea to maybe help your son is to have a code word. For some reason there are words that make my kids crack up. The words have varied through the years, but they are ones the kids think sound funny. Like "smock". When Wiz was on the edge of losing it, or had gone over the edge in public, we would have a code word that would remind him that he was getting out of control. It took quite a while, but he was able to learn to pull it together long enough to go to a restroom, parking lot, or other private place. It saved him from a fair amount of embarrassment and teasing.</p><p></p><p>We also learned that if he had any kind of extended physical activity he NEEDED some type of snack that was high in protein. Even if we were going to the store after school I would make sure to bring a high protein snack for him. Sometimes I would even give him a boost of protein at half time in his soccer games. It really helped him stay in control and be able to stop long enough to go somewhere private if he did lose it. I LOVED having those balance bars and zone bars around. Certain flavors had the sweetness he craved and enough protein to really help him. It took a lot of label reading because MANY of the "health" bars have more carbs and sugars than candy bars. We have the best luck with the Balance brand and the Zone brand. I also used the Zone diet books to help figure out balanced snacks that he liked. </p><p></p><p>Sorry this is so long. I didn't realize I had written a book, LOL! </p><p></p><p>One last thing- Have you read "What Your Explosive child is Trying to Tell You" by Dr. Riley? It might be helpful, though you do seem to have a good handle on difficult child's meltdowns. I was surprised at how insightful and helpful it was.</p></blockquote><p></p>
[QUOTE="susiestar, post: 368418, member: 1233"] It is so hard to watch when our kids lose it around others. Knowing they will be teased, possibly for quite a long time, about behavior that they truly are incapable of controlling, is very very painful. I am so sorry that the second game went so badly. I hope that you and difficult child and the family can work on not letting the meltdown ruin the memory of the triumphs of the first game. It is a hard thing to do, but being able to put the meltdown behind you and enjoy the rest of the day and the memory of the good things before the upset is very important. Otherwise it is really easy to let a meltdown that lasts an hour or less ruin and entire day. That adds up to weeks, months, even years. For quite a while I had to push my husband to work with me to write down positive things that happened every day so that we could both SEE that difficult child's problems were not "ruining" all of our lives. They caused a lot of stress, anger, and unhappiness, even fear, without a doubt. But if you lose sight of the good things you can lose sight of your goals and the stress will destroy every aspect of your life. Getting a complete, thorough evaluation is the key to helping your son. You need to have testing done by either a neuropsychologist (therapist with special training in how the brain and behavior interact) or by a multi-disciplinary team. Many here feel that the neuropsychologist does better testing. There is a lot of variation, of course, but either way the testing should involve several sessions adding up to about 10-12 hours of time. You can find the experts at major university or children's hospitals. We have had other members from your area, so maybe someone can PM the names of docs who helped them. We do not say names of docs/phosps etc... on the open forums. Teaching hospitals can offer great services. Every resident/intern/whatever has their work reviewed and supervised by a teacher. You may actually get MORE help because they collaborate and you are not stuck with one person's perceptions and ideas. We worked with a major children's hospital when we lived in OH and overall had EXCELLENT service and results. We did get a couple of boneheads but we saw far more idiots in private practice or smaller hospitals. When we encountered someone who suggested or prescribed something that made no sense at the teaching hospital we could speak to someone who supervised them and figure out a plan of action. Docs at teaching hospitals are also much more likely to be up on the latest research. Private practice docs are more likely to be too busy to follow the latest research and to depend on info from pharmaceutical companies for their continuing education. The info presented by pharm co's is often very skewed in favor of whatever products are making the biggest profits for them. One thing I really LIKE about teaching hospitals is that the docs are willing to share the reasons behind their suggestions far more than some other docs are. They are accustomed to explaining the why behind the diagnosis or rx or suggestion. They also are more willing to go back and correct mistakes, esp in things like the family history. Our history, like that of most difficult children, is quite complex. It is rare to not have several rather big misperceptions over things that have happened and what we have done to treat them. With docs who do not teach I find that IF they are willing to acknowledge the mistake they correct it on paper but not in their minds. They get stuck on what they remember from the initial interview and ignore or forget the correction, even if it makes a BIG difference in treatment. One doctor SWEARS that during a restraint I caused nerve damage in Wiz' left hand and that Wiz has had a LOT of therapy and medication to treat it. The reality is that Wiz caused nerve damage in MY left hand and I have had the treatment/medication for it. We stopped seeing him when he kept rx'ing phys therapy and braces for Wiz' left hand. I even showed him the tests from MY docs about the damage. So he decided we BOTH had damaged hands and that I am in denial about having caused long term harm to my child. The docs in the teaching hospitals seem more willing to accept that they make errors and to correct them. It is one reason I LIKE teaching hospitals. (And in a teaching hospital there are extra eyes on things so if a mistake is made there is a MUCH greater chance that someone will admit it, at least to you. Having had a HUGE error made in a critical area of my son's care by a doctor at a small hospital, I am well aware that you often are lucky to even LEARN about the error unless there are too many people around for it to be swept under the rug.) There is usually a long waiting list to see a specialist. Three months is rather standard, at least in each hospital/practice we have encountered, and sometimes it takes even longer. If at all possible, get the wheels rolling to get an appointment with whomever you can find. If you find a doctor you like better later, you can always make an appointment with them and cancel the other one. Or see both to see which one you prefer. I hope this makes sense. One idea to maybe help your son is to have a code word. For some reason there are words that make my kids crack up. The words have varied through the years, but they are ones the kids think sound funny. Like "smock". When Wiz was on the edge of losing it, or had gone over the edge in public, we would have a code word that would remind him that he was getting out of control. It took quite a while, but he was able to learn to pull it together long enough to go to a restroom, parking lot, or other private place. It saved him from a fair amount of embarrassment and teasing. We also learned that if he had any kind of extended physical activity he NEEDED some type of snack that was high in protein. Even if we were going to the store after school I would make sure to bring a high protein snack for him. Sometimes I would even give him a boost of protein at half time in his soccer games. It really helped him stay in control and be able to stop long enough to go somewhere private if he did lose it. I LOVED having those balance bars and zone bars around. Certain flavors had the sweetness he craved and enough protein to really help him. It took a lot of label reading because MANY of the "health" bars have more carbs and sugars than candy bars. We have the best luck with the Balance brand and the Zone brand. I also used the Zone diet books to help figure out balanced snacks that he liked. Sorry this is so long. I didn't realize I had written a book, LOL! One last thing- Have you read "What Your Explosive child is Trying to Tell You" by Dr. Riley? It might be helpful, though you do seem to have a good handle on difficult child's meltdowns. I was surprised at how insightful and helpful it was. [/QUOTE]
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