Guest guest Posted August 12, 2007 Report Share Posted August 12, 2007 This is an inside edition clip from August 8, 2001 The announcer can't pronounce apraxia but most of the info is good. Has some " grown up " apraxic kids For whatever reason my hubby decided to start surfing You tube and asked me for a search word, I Said Apraxia. He said " that isn't very fun " BUT it was amazing what we found. We have since emailed out this link to our family and have gotten more people to see " our side " of the issue vs their side " paranoid hypochondriac mom " It also helped my hubby see that there are real issues with our son. He is much more on board with early intervention/dietary changes than before. _____ From: [mailto: ] On Behalf Of Liz Sent: Sunday, August 12, 2007 7:25 AM Subject: [ ] Educating family Anyone have any tips. I tried yet again yesterday and failed miserably. Frustrating as it is I can almost handle drs looking at me funny when I ask certain questions but with family, when I explain something that may be part of our deal (which they now of course believe he has a problem) they do not agree with my idea of supected sources and just assume this could so easily be fixed if I just go to the dr. I should include that in this bunch are not one medical professional. There are, however, very human folks who missed big stuff in their own kids for years. I do not say that to condemn. My point is, if you could miss something big for so long, once you found it, wouldn't you be supportive of someone trying to be proactive. It's hard. I love these people. They love my kids. It makes me wonder what exactly they think I am doing? Running around dedicated to finding the wrong answers? Is this the best I can hope for adter finally getting them to agree there is a problem. In the end, this is not about my ego but my kids and their health. At forst I only got family involved to get them on board with the diet. That brought me to this place of annoyance. Perhaps I should have just stayed away. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2007 Report Share Posted August 12, 2007 Thanks! I forgot about that. I did the exact same thing amnd made my husband watch video of a very bright young man struggle to read something he understood well and way more than his expression of it would indicate. My husband really got it then. I am simply not ready to do that yet. My bunch would then just pity him and that is not the right thing. Zeissler wrote: > > > > >This is an inside edition clip from August 8, 2001 The announcer can't >pronounce apraxia but most of the info is good. Has some " grown up " apraxic >kids > > > >For whatever reason my hubby decided to start surfing You tube and asked me >for a search word, I Said Apraxia. He said " that isn't very fun " BUT it was >amazing what we found. We have since emailed out this link to our family >and have gotten more people to see " our side " of the issue vs their side > " paranoid hypochondriac mom " It also helped my hubby see that there are >real issues with our son. He is much more on board with early >intervention/dietary changes than before. > > > > _____ > >From: >[mailto: ] On Behalf Of Liz >Sent: Sunday, August 12, 2007 7:25 AM > >Subject: [ ] Educating family > > > >Anyone have any tips. I tried yet again yesterday and failed miserably. >Frustrating as it is I can almost handle drs looking at me funny when I >ask certain questions but with family, when I explain something that may >be part of our deal (which they now of course believe he has a problem) >they do not agree with my idea of supected sources and just assume this >could so easily be fixed if I just go to the dr. I should include that >in this bunch are not one medical professional. There are, however, >very human folks who missed big stuff in their own kids for years. I do >not say that to condemn. My point is, if you could miss something big >for so long, once you found it, wouldn't you be supportive of someone >trying to be proactive. It's hard. I love these people. They love my >kids. It makes me wonder what exactly they think I am doing? Running >around dedicated to finding the wrong answers? Is this the best I can >hope for adter finally getting them to agree there is a problem. In the >end, this is not about my ego but my kids and their health. At forst I >only got family involved to get them on board with the diet. That >brought me to this place of annoyance. Perhaps I should have just stayed >away. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2007 Report Share Posted August 12, 2007 I think we as parents can at time make our lives more difficult by doing one thing.... giving out too much information. With extended family this is especially true. For instance..... I tell extended family that my child has food allergies or food intolerances to wheat, dairy, etc etc etc. I do not tell them we are doing a gfcf " diet " . Why? It we're doing a " diet " they will feel sorry for the kid and give her a cookie, or say that " diets " are meant to be broken, etc. If they know it is a food intolerance they realize that a cookie is harmful. When speaking with family members we need to size up the relative. I think 99.9% of our family members do not need much info especially info on caseomorphins, our concerns over environmental factors in regards to our child's disease, or anything of the like. They simply need to know my kid has a neurologic disorder called apraxia, this affects her speech and motor activity. She needs intensive therapies to over come this disorder. She has food intolerances and so there are many things she cannot eat. The end. End of Story. When we get into diets, environmental causes, etc many generations of folks will think we are turning our backs on the doctors and this makes them worry. When they worry they cause you trouble. You don't want trouble so stop making them worry. You do this by limiting what you say. And.... to those grandmotherly types that think one cookie doesn't hurt and say " what's the worse that can happen? " 2 words will shut them up and have them running for the hills..... " explosive diarrhea " . My mother is one who wants to do everything that I say don't do when it comes to my child. It's her idea of " spoiling " and in many ways it is a joke. She wanted my daughter to eat chef boyardee ravioli and I said she's allergic. She said " what will happen " . I did not go into behavior, hyperactivity, sensory stuff because all of that is easy to ignore and write off as " worried mom " . Not so with stinky nasty diapers. When she heard the word " diarrhea " she promptly took us to the grocery store so we could get food that Grace could eat and she has never given me a problem about it since... and this is VERY unusual for my mother. I use this same tactic with school personnel, speech therapists who don't give gfcf or such things any weight, sunday school teachers, and the sister in law that is an slp and swore for years there was not one thing wrong with my daughter (even though she now tells everyone she begged me to get her evaluated for apraxia.... but that's another story!). Everyone is on a " need to know " basis and there is very little they " need to know " . So, I know you've already talked at length with family but I would back away from the discussions. Just give them small amounts of info and focus on the progress your child is making in therapy. Focus on the fact that the therapy is what the doctor has said to do, that therapy is what the doctor ordered. Tell them all about the neat therapy like activities that you are doing at home and that they can do too.... activities that are recommended by the therapist that the doctor ordered. Tell them about the new words and new sentences... and give the praise to the therapy. Grandmas and grandpas understand these things a bit more and then they can participate in a more positive way. This makes them feel they are being supportive....and them feeling like they are being supportive and that their " baby " is getting help (help that they can understand) goes a long way toward keeping them out of your hair. And, at least in my case, that's what I really want. I want them to support us but keep out of our hair!!!!!! Good luck Kris The Knitting Wannabe http://knittingwannabe.typepad.com Sonny & Shear: The I’ve Got Ewe, Babe Yarn Shop http://www.sonnyandshear.com On Aug 12, 2007, at 5:24 AM, Liz wrote: > Anyone have any tips. I tried yet again yesterday and failed > miserably. > Frustrating as it is I can almost handle drs looking at me funny > when I > ask certain questions but with family, when I explain something > that may > be part of our deal (which they now of course believe he has a > problem) > they do not agree with my idea of supected sources and just assume > this > could so easily be fixed if I just go to the dr. I should include that > in this bunch are not one medical professional. There are, however, > very human folks who missed big stuff in their own kids for years. > I do > not say that to condemn. My point is, if you could miss something big > for so long, once you found it, wouldn't you be supportive of someone > trying to be proactive. It's hard. I love these people. They love my > kids. It makes me wonder what exactly they think I am doing? Running > around dedicated to finding the wrong answers? Is this the best I can > hope for adter finally getting them to agree there is a problem. In > the > end, this is not about my ego but my kids and their health. At forst I > only got family involved to get them on board with the diet. That > brought me to this place of annoyance. Perhaps I should have just > stayed > away. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2007 Report Share Posted August 12, 2007 Man do I wish I asked this question two days ago. I would not have set of multiple landmines yesterday if I had. Oh well, now I know how to proceed. Thanks! Liz Haukoos wrote: >I think we as parents can at time make our lives more difficult by >doing one thing.... giving out too much information. With extended >family this is especially true. For instance..... I tell extended >family that my child has food allergies or food intolerances to >wheat, dairy, etc etc etc. I do not tell them we are doing a gfcf > " diet " . Why? It we're doing a " diet " they will feel sorry for the >kid and give her a cookie, or say that " diets " are meant to be >broken, etc. If they know it is a food intolerance they realize that >a cookie is harmful. When speaking with family members we need to >size up the relative. I think 99.9% of our family members do not >need much info especially info on caseomorphins, our concerns over >environmental factors in regards to our child's disease, or anything >of the like. They simply need to know my kid has a neurologic >disorder called apraxia, this affects her speech and motor activity. >She needs intensive therapies to over come this disorder. She has >food intolerances and so there are many things she cannot eat. The >end. End of Story. > >When we get into diets, environmental causes, etc many generations of >folks will think we are turning our backs on the doctors and this >makes them worry. When they worry they cause you trouble. You don't >want trouble so stop making them worry. You do this by limiting what >you say. > >And.... to those grandmotherly types that think one cookie doesn't >hurt and say " what's the worse that can happen? " 2 words will shut >them up and have them running for the hills..... " explosive >diarrhea " . My mother is one who wants to do everything that I say >don't do when it comes to my child. It's her idea of " spoiling " and >in many ways it is a joke. She wanted my daughter to eat chef >boyardee ravioli and I said she's allergic. She said " what will >happen " . I did not go into behavior, hyperactivity, sensory stuff >because all of that is easy to ignore and write off as " worried >mom " . Not so with stinky nasty diapers. When she heard the word > " diarrhea " she promptly took us to the grocery store so we could get >food that Grace could eat and she has never given me a problem >about it since... and this is VERY unusual for my mother. > >I use this same tactic with school personnel, speech therapists who >don't give gfcf or such things any weight, sunday school teachers, >and the sister in law that is an slp and swore for years there was >not one thing wrong with my daughter (even though she now tells >everyone she begged me to get her evaluated for apraxia.... but >that's another story!). Everyone is on a " need to know " basis and >there is very little they " need to know " . > >So, I know you've already talked at length with family but I would >back away from the discussions. Just give them small amounts of info >and focus on the progress your child is making in therapy. Focus on >the fact that the therapy is what the doctor has said to do, that >therapy is what the doctor ordered. Tell them all about the neat >therapy like activities that you are doing at home and that they can >do too.... activities that are recommended by the therapist that the >doctor ordered. Tell them about the new words and new sentences... >and give the praise to the therapy. Grandmas and grandpas understand >these things a bit more and then they can participate in a more >positive way. This makes them feel they are being supportive....and >them feeling like they are being supportive and that their " baby " is >getting help (help that they can understand) goes a long way toward >keeping them out of your hair. > > >And, at least in my case, that's what I really want. I want them to >support us but keep out of our hair!!!!!! > > >Good luck > >Kris > > >The Knitting Wannabe http://knittingwannabe.typepad.com > >Sonny & Shear: The I’ve Got Ewe, Babe Yarn Shop >http://www.sonnyandshear.com > > > > >On Aug 12, 2007, at 5:24 AM, Liz wrote: > > > >>Anyone have any tips. I tried yet again yesterday and failed >>miserably. >>Frustrating as it is I can almost handle drs looking at me funny >>when I >>ask certain questions but with family, when I explain something >>that may >>be part of our deal (which they now of course believe he has a >>problem) >>they do not agree with my idea of supected sources and just assume >>this >>could so easily be fixed if I just go to the dr. I should include that >>in this bunch are not one medical professional. There are, however, >>very human folks who missed big stuff in their own kids for years. >>I do >>not say that to condemn. My point is, if you could miss something big >>for so long, once you found it, wouldn't you be supportive of someone >>trying to be proactive. It's hard. I love these people. They love my >>kids. It makes me wonder what exactly they think I am doing? Running >>around dedicated to finding the wrong answers? Is this the best I can >>hope for adter finally getting them to agree there is a problem. In >>the >>end, this is not about my ego but my kids and their health. At forst I >>only got family involved to get them on board with the diet. That >>brought me to this place of annoyance. Perhaps I should have just >>stayed >>away. >> >> >> >> >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2007 Report Share Posted August 12, 2007 Wow...this is really good advice. I definitely see your point. It is amazing the number of people who don't take us seriously when I try to explain the seriousness of a tree nut allergy. I have a VERY close friend who brought a batch of cookies loaded with nuts for Cole to thank us for something. She said she forgot. Aggie Re: [ ] Educating family I think we as parents can at time make our lives more difficult by doing one thing.... giving out too much information. With extended family this is especially true. For instance..... I tell extended family that my child has food allergies or food intolerances to wheat, dairy, etc etc etc. I do not tell them we are doing a gfcf " diet " . Why? It we're doing a " diet " they will feel sorry for the kid and give her a cookie, or say that " diets " are meant to be broken, etc. If they know it is a food intolerance they realize that a cookie is harmful. When speaking with family members we need to size up the relative. I think 99.9% of our family members do not need much info especially info on caseomorphins, our concerns over environmental factors in regards to our child's disease, or anything of the like. They simply need to know my kid has a neurologic disorder called apraxia, this affects her speech and motor activity. She needs intensive therapies to over come this disorder. She has food intolerances and so there are many things she cannot eat. The end. End of Story. When we get into diets, environmental causes, etc many generations of folks will think we are turning our backs on the doctors and this makes them worry. When they worry they cause you trouble. You don't want trouble so stop making them worry. You do this by limiting what you say. And.... to those grandmotherly types that think one cookie doesn't hurt and say " what's the worse that can happen? " 2 words will shut them up and have them running for the hills..... " explosive diarrhea " . My mother is one who wants to do everything that I say don't do when it comes to my child. It's her idea of " spoiling " and in many ways it is a joke. She wanted my daughter to eat chef boyardee ravioli and I said she's allergic. She said " what will happen " . I did not go into behavior, hyperactivity, sensory stuff because all of that is easy to ignore and write off as " worried mom " . Not so with stinky nasty diapers. When she heard the word " diarrhea " she promptly took us to the grocery store so we could get food that Grace could eat and she has never given me a problem about it since... and this is VERY unusual for my mother. I use this same tactic with school personnel, speech therapists who don't give gfcf or such things any weight, sunday school teachers, and the sister in law that is an slp and swore for years there was not one thing wrong with my daughter (even though she now tells everyone she begged me to get her evaluated for apraxia.... but that's another story!). Everyone is on a " need to know " basis and there is very little they " need to know " . So, I know you've already talked at length with family but I would back away from the discussions. Just give them small amounts of info and focus on the progress your child is making in therapy. Focus on the fact that the therapy is what the doctor has said to do, that therapy is what the doctor ordered. Tell them all about the neat therapy like activities that you are doing at home and that they can do too.... activities that are recommended by the therapist that the doctor ordered. Tell them about the new words and new sentences... and give the praise to the therapy. Grandmas and grandpas understand these things a bit more and then they can participate in a more positive way. This makes them feel they are being supportive....and them feeling like they are being supportive and that their " baby " is getting help (help that they can understand) goes a long way toward keeping them out of your hair. And, at least in my case, that's what I really want. I want them to support us but keep out of our hair!!!!!! Good luck Kris The Knitting Wannabe http://knittingwannabe.typepad.com Sonny & Shear: The I've Got Ewe, Babe Yarn Shop http://www.sonnyandshear.com On Aug 12, 2007, at 5:24 AM, Liz wrote: > Anyone have any tips. I tried yet again yesterday and failed > miserably. > Frustrating as it is I can almost handle drs looking at me funny > when I > ask certain questions but with family, when I explain something > that may > be part of our deal (which they now of course believe he has a > problem) > they do not agree with my idea of supected sources and just assume > this > could so easily be fixed if I just go to the dr. I should include that > in this bunch are not one medical professional. There are, however, > very human folks who missed big stuff in their own kids for years. > I do > not say that to condemn. My point is, if you could miss something big > for so long, once you found it, wouldn't you be supportive of someone > trying to be proactive. It's hard. I love these people. They love my > kids. It makes me wonder what exactly they think I am doing? Running > around dedicated to finding the wrong answers? Is this the best I can > hope for adter finally getting them to agree there is a problem. In > the > end, this is not about my ego but my kids and their health. At forst I > only got family involved to get them on board with the diet. That > brought me to this place of annoyance. Perhaps I should have just > stayed > away. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2007 Report Share Posted August 12, 2007 I agree with the Too Much Information idea. Just tell them as much as they want to hear. Its not your job to convince them because its not THEIR family. and if they are from a different generation, they never will really understand. Its like trying to convince someone who BF to switch to a bottle. Just smile, nod and let them talk like you are considering their ideas too. Than go home and take care of your own family the way you see is best for them!! - -- In , Haukoos <catnip9@...> wrote: > > I think we as parents can at time make our lives more difficult by > doing one thing.... giving out too much information. With extended > family this is especially true. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 I so appreciated your e-mail Kris. My 6 year old daughter w/apraxia, seizure disorder, etc. began having terrible diarrhea this summer. After having her stool tested for bacteria and parasites, we went to a pediatric GI yesterday at town University Medical Center since her neurologist is also there. She is scheduled to have a colonoscopy, blood drawn, etc. on Tuesday. The GI told us that as of Tuesday, our daughter should refrain from gluten and dairy. A few weeks ago, we told my parents that we thought that this is what we were going to have to do. They were not happy about it but after seeing what I was going through changing her terrible diapers, behavioral problems, lack of sleep, etc. they started looking for articles in The Washington Post. My 82 year old Dad (a lover of sweets) even told me about a local store " Roots " that we can buy her gluten free cookies, cakes, etc! This made me love my parents even more than I already do. Your advice will help me with the rest of the people in our circle. Thanks for taking the time to write out your sentiments so clearly. Warm Regards, Kitty Re: [ ] Educating family I think we as parents can at time make our lives more difficult by doing one thing.... giving out too much information. With extended family this is especially true. For instance..... I tell extended family that my child has food allergies or food intolerances to wheat, dairy, etc etc etc. I do not tell them we are doing a gfcf " diet " . Why? It we're doing a " diet " they will feel sorry for the kid and give her a cookie, or say that " diets " are meant to be broken, etc. If they know it is a food intolerance they realize that a cookie is harmful. When speaking with family members we need to size up the relative. I think 99.9% of our family members do not need much info especially info on caseomorphins, our concerns over environmental factors in regards to our child's disease, or anything of the like. They simply need to know my kid has a neurologic disorder called apraxia, this affects her speech and motor activity. She needs intensive therapies to over come this disorder. She has food intolerances and so there are many things she cannot eat. The end. End of Story. When we get into diets, environmental causes, etc many generations of folks will think we are turning our backs on the doctors and this makes them worry. When they worry they cause you trouble. You don't want trouble so stop making them worry. You do this by limiting what you say. And.... to those grandmotherly types that think one cookie doesn't hurt and say " what's the worse that can happen? " 2 words will shut them up and have them running for the hills..... " explosive diarrhea " . My mother is one who wants to do everything that I say don't do when it comes to my child. It's her idea of " spoiling " and in many ways it is a joke. She wanted my daughter to eat chef boyardee ravioli and I said she's allergic. She said " what will happen " . I did not go into behavior, hyperactivity, sensory stuff because all of that is easy to ignore and write off as " worried mom " . Not so with stinky nasty diapers. When she heard the word " diarrhea " she promptly took us to the grocery store so we could get food that Grace could eat and she has never given me a problem about it since... and this is VERY unusual for my mother. I use this same tactic with school personnel, speech therapists who don't give gfcf or such things any weight, sunday school teachers, and the sister in law that is an slp and swore for years there was not one thing wrong with my daughter (even though she now tells everyone she begged me to get her evaluated for apraxia.... but that's another story!). Everyone is on a " need to know " basis and there is very little they " need to know " . So, I know you've already talked at length with family but I would back away from the discussions. Just give them small amounts of info and focus on the progress your child is making in therapy. Focus on the fact that the therapy is what the doctor has said to do, that therapy is what the doctor ordered. Tell them all about the neat therapy like activities that you are doing at home and that they can do too.... activities that are recommended by the therapist that the doctor ordered. Tell them about the new words and new sentences... and give the praise to the therapy. Grandmas and grandpas understand these things a bit more and then they can participate in a more positive way. This makes them feel they are being supportive....and them feeling like they are being supportive and that their " baby " is getting help (help that they can understand) goes a long way toward keeping them out of your hair. And, at least in my case, that's what I really want. I want them to support us but keep out of our hair!!!!!! Good luck Kris The Knitting Wannabe http://knittingwannabe.typepad.com Sonny & Shear: The I've Got Ewe, Babe Yarn Shop http://www.sonnyandshear.com On Aug 12, 2007, at 5:24 AM, Liz wrote: > Anyone have any tips. I tried yet again yesterday and failed > miserably. > Frustrating as it is I can almost handle drs looking at me funny > when I > ask certain questions but with family, when I explain something > that may > be part of our deal (which they now of course believe he has a > problem) > they do not agree with my idea of supected sources and just assume > this > could so easily be fixed if I just go to the dr. I should include that > in this bunch are not one medical professional. There are, however, > very human folks who missed big stuff in their own kids for years. > I do > not say that to condemn. My point is, if you could miss something big > for so long, once you found it, wouldn't you be supportive of someone > trying to be proactive. It's hard. I love these people. They love my > kids. It makes me wonder what exactly they think I am doing? Running > around dedicated to finding the wrong answers? Is this the best I can > hope for adter finally getting them to agree there is a problem. In > the > end, this is not about my ego but my kids and their health. At forst I > only got family involved to get them on board with the diet. That > brought me to this place of annoyance. Perhaps I should have just > stayed > away. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 I have a daughter who is 7. I was wondering if anyone who has a child with apraxia around this age has any advice to help her with reading. She is having a hard time with this, visually memorizes sight words. But, is not moving past this at all in reading complete sentences. I am starting to worry about this issue. Any advice Thanks- [ ] Educating family Anyone have any tips. I tried yet again yesterday and failed miserably. Frustrating as it is I can almost handle drs looking at me funny when I ask certain questions but with family, when I explain something that may be part of our deal (which they now of course believe he has a problem) they do not agree with my idea of supected sources and just assume this could so easily be fixed if I just go to the dr. I should include that in this bunch are not one medical professional. There are, however, very human folks who missed big stuff in their own kids for years. I do not say that to condemn. My point is, if you could miss something big for so long, once you found it, wouldn't you be supportive of someone trying to be proactive. It's hard. I love these people. They love my kids. It makes me wonder what exactly they think I am doing? Running around dedicated to finding the wrong answers? Is this the best I can hope for adter finally getting them to agree there is a problem. In the end, this is not about my ego but my kids and their health. At forst I only got family involved to get them on board with the diet. That brought me to this place of annoyance. Perhaps I should have just stayed away. Quote Link to comment Share on other sites More sharing options...
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