Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 Welcome Julius! A. M. Ortiz  ________________________________ From: Julius Romero <jules_romero70@...> Sent: Fri, November 13, 2009 8:22:31 AM Subject: Hello everyone  Hi Guys, I would like to thank you for giving the opportunity to join in this group. I am a Registered Nurse. I have been working in the Hospital, particularly in the Emergency and operating room before joining the oil and gas industry. Now, I work on both areas; HSE advisor and Medic. Actually, if the company would like to cut cost then I can be their Medic and HSE advisor at the same time. Joining remote support medics would be a great experience and I am looking forward to join in one of our future job opportunities. Cheers Julius Romero R.N. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 Hi A.M. Thanks for the warm welcome. Regards, Julius Romero, Philippines From: [mailto: ] On Behalf Of Asumpta Marie Ortiz Sent: Friday, November 13, 2009 5:43 PM Subject: Re: Hello everyone Welcome Julius! A. M. Ortiz ________________________________ From: Julius Romero <jules_romero70@... <mailto:jules_romero70%40> > <mailto:%40> Sent: Fri, November 13, 2009 8:22:31 AM Subject: Hello everyone Hi Guys, I would like to thank you for giving the opportunity to join in this group. I am a Registered Nurse. I have been working in the Hospital, particularly in the Emergency and operating room before joining the oil and gas industry. Now, I work on both areas; HSE advisor and Medic. Actually, if the company would like to cut cost then I can be their Medic and HSE advisor at the same time. Joining remote support medics would be a great experience and I am looking forward to join in one of our future job opportunities. Cheers Julius Romero R.N. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2009 Report Share Posted November 14, 2009 HI I am the mother of a 13 almost 14 year old who had many of your sons issues earlier in his life. Have you gotten copies of his labs and reports? You are entitled to them and they will help you better understand his issues. Has anyone spoken of using Gamma Globulin to help him? I lived in Hawaii for 11 years and actually got my RN from UH Manoa. Where is he getting his Care?? The goal of the Gamma Globulin treatments is to help reduce the damage to his organs so I am not sure why they have not started it. I am sorry your son is having to go through all of this without more aggressive care. I surely would consider a second opinion if someone does not start some treatments soon. My son lives a very normal life. He gets Sub Q gamma globulin weekly and it has changed his life. We started when he was 3 but it really should have been started sooner. This is a Great group of parents that are very knowledgeable and have wonderful resources to share. BARBIE ________________________________ From: <navymillers@...> Sent: Sat, November 14, 2009 1:06:05 AM Subject: Hello everyone Hello everyone, I'm new here and actually new to the whole PID thing. My name is , and I have a almost 7yr old son named Logan, who was born with tracialmalasia, allergies and severe eczema to the point his skin in the diaper area was like scales, and would crack and bleed. Him and I were even actually allergic to each other. The doctors have always told us that my son had congested, constricted lungs, sinisitus, ect, ect. I've been begging for answers for why my son is so pale, gets sick so easy and so often, and anytime he gets a hang nail, it turns into a full blown infection. A few years ago, he had Rota virus and almost died, and it didn't even phase the doctors. Just this year, the doctors finally did the allergy tests, and found out that my son has selective immune deficiency (low in both IgG and IgA). He's also a carrier of cystic fibrosis, and has bowel issues (chronic bowel blockage). He's had 2 sets of PE tubes this year to help drain his ears, but still gets ear infections. When he gets congested, he turns pale with purple around his eyes, turns white around his mouth, and his lips turn purple. We've been going thru this for almost 7yrs without answers, and finally, we have a few answers. They found that he has leisons in his sinuses (which is from some sinus disease we didn't know about), swollen tissue, and swollen turbinates. They still aren't sure why he's always congested, and what's causing all of it, since his allergies aren't that bad, but in December, if there's no change, then their going to do sinus surgery. So, that's my son's and my story. The doctors aren't telling me much about Selected immune def., and what's to come or what we might have to go thru, so I'm coming to you guys. I haven't ever known anyone with it before, and can't find anyone else here in Hawaii with it. So, I would love to hear how you have gotten thru it so far. Day to day life seems to be challenging for my son, depending on the weather and what's in that air. What do I do to help him? lost, confused and new to it all~ Logan's mommy~ ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2009 Report Share Posted November 14, 2009 , You are in the worst part. Getting the diagnosis, but not knowing where to turn. Your best source of info is going to be the IDF. www.primaryimmune.org is the website. I have a son with Selective IgG disease and a daughter with Hypogam. Are they considering IVIG or SubQ? That has made a dramatic difference in my son's life. He was also " sickly " and very pale with dark circles under the eyes. He is Ig1 and Ig2 deficient, but his IgA is good. He is now " normal. " Life was so rough before starting gammaglobulin. Now he does everything everyone else does, and has what we call, " a super immune system. " He does still get viruses, but bacterial infections have almost disappeared. It's been a long road, but we are seeing the light at the end of the tunnel. www.caringbridge.org/visit/alexsmith From: navymillers@... Date: Sat, 14 Nov 2009 07:06:05 +0000 Subject: Hello everyone Hello everyone, I'm new here and actually new to the whole PID thing. My name is , and I have a almost 7yr old son named Logan, who was born with tracialmalasia, allergies and severe eczema to the point his skin in the diaper area was like scales, and would crack and bleed. Him and I were even actually allergic to each other. The doctors have always told us that my son had congested, constricted lungs, sinisitus, ect, ect. I've been begging for answers for why my son is so pale, gets sick so easy and so often, and anytime he gets a hang nail, it turns into a full blown infection. A few years ago, he had Rota virus and almost died, and it didn't even phase the doctors. Just this year, the doctors finally did the allergy tests, and found out that my son has selective immune deficiency (low in both IgG and IgA). He's also a carrier of cystic fibrosis, and has bowel issues (chronic bowel blockage). He's had 2 sets of PE tubes this year to help drain his ears, but still gets ear infections. When he gets congested, he turns pale with purple around his eyes, turns white around his mouth, and his lips turn purple. We've been going thru this for almost 7yrs without answers, and finally, we have a few answers. They found that he has leisons in his sinuses (which is from some sinus disease we didn't know about), swollen tissue, and swollen turbinates. They still aren't sure why he's always congested, and what's causing all of it, since his allergies aren't that bad, but in December, if there's no change, then their going to do sinus surgery. So, that's my son's and my story. The doctors aren't telling me much about Selected immune def., and what's to come or what we might have to go thru, so I'm coming to you guys. I haven't ever known anyone with it before, and can't find anyone else here in Hawaii with it. So, I would love to hear how you have gotten thru it so far. Day to day life seems to be challenging for my son, depending on the weather and what's in that air. What do I do to help him? lost, confused and new to it all~ Logan's mommy~ ~ _________________________________________________________________ Windows 7: I wanted simpler, now it's simpler. I'm a rock star. http://www.microsoft.com/Windows/windows-7/default.aspx?h=myidea?ocid=PID24727::\ T:WLMTAGL:ON:WL:en-US:WWL_WIN_myidea:112009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 Hi! I just started myself. I think that at it's core, weight loss really is ALL about the emotional aspect. Once we start feeling good about ourselves, we want to take of ourselves, right? And really, doing mental/emotional housecleaning is the only way to get the healthy habit to stick. Good luck on your journey, I know I need some. Blessings, Kayla > > I just started listening to IOWL, but let me tell you a little about myself... > > I am a 48 man and, like everyone else, have tried one diet after another with no success. I weigh over 325 lbs (don't want to look at the scale anymore). From listening to the Prologue and episode 1, sounds like the program deals with the emotional aspect of it too, so I thought I would give it a try. I don't have any recent pictures, but as soon as I get a picture I will post it. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2010 Report Share Posted March 8, 2010 Hi! My name is Jantje and I have a similar problem. I am still working on it, but this is one thing I came up with: I don't have the budget to everytime buy lipstick, get a massage or buy new clothes, but I found that downloading a fun, fast song to add to my workout playlist works pretty well for me. Doesn't always work but more often than not. And it is comparable to a chocolate bar except you can listen to it again and again...! I would be interested to hear what works for others. I wish us all success on our weight loss journey. > > Hi everybody, > My name is Amber and I'm still pretty new to the podcast, but I'm tearing through them trying to get caught up (plus I can't get enough!). I'm on episode 19 and I've only been doing this since Feb. 25. Here's my issue...I don't know how to reward myself. I used to do it with food, but obviously that won't work anymore. I don't have the money to go out and buy myself something every single time I go to the gym, but I need some way of rewarding myself for going. Maybe the reward should be the weight I'm losing, but that's not immediate enough for me. Or maybe the problem is with my motivation...I don't know...Anyway, my point is that my motivation doesn't keep me going to the gym. Does anyone have any advice for me? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2010 Report Share Posted March 8, 2010 Hi! My name is Jantje and I have a similar problem. I am still working on it, but this is one thing I came up with: I don't have the budget to everytime buy lipstick, get a massage or buy new clothes, but I found that downloading a fun, fast song to add to my workout playlist works pretty well for me. Doesn't always work but more often than not. And it is comparable to a chocolate bar except you can listen to it again and again...! I would be interested to hear what works for others. I wish us all success on our weight loss journey. > > Hi everybody, > My name is Amber and I'm still pretty new to the podcast, but I'm tearing through them trying to get caught up (plus I can't get enough!). I'm on episode 19 and I've only been doing this since Feb. 25. Here's my issue...I don't know how to reward myself. I used to do it with food, but obviously that won't work anymore. I don't have the money to go out and buy myself something every single time I go to the gym, but I need some way of rewarding myself for going. Maybe the reward should be the weight I'm losing, but that's not immediate enough for me. Or maybe the problem is with my motivation...I don't know...Anyway, my point is that my motivation doesn't keep me going to the gym. Does anyone have any advice for me? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2010 Report Share Posted March 8, 2010 How about some mini rewards, such as: a new nail polish or cosmetic a new workout song/mps a trip to the thrift store for new clothes while you are losing weight a lovely hot bubble bath a long walk w/a friend and/or your dog a redbox movie rental (with healthy snacks of course) some new craft materials I could go on and on, but you get the idea! Have fun with it. I know some people create a point system for their rewards, such as so many lbs lost or so many visits to the gym, etc. > > Hi everybody, > My name is Amber and I'm still pretty new to the podcast, but I'm tearing through them trying to get caught up (plus I can't get enough!). I'm on episode 19 and I've only been doing this since Feb. 25. Here's my issue...I don't know how to reward myself. I used to do it with food, but obviously that won't work anymore. I don't have the money to go out and buy myself something every single time I go to the gym, but I need some way of rewarding myself for going. Maybe the reward should be the weight I'm losing, but that's not immediate enough for me. Or maybe the problem is with my motivation...I don't know...Anyway, my point is that my motivation doesn't keep me going to the gym. Does anyone have any advice for me? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2010 Report Share Posted March 8, 2010 How about some mini rewards, such as: a new nail polish or cosmetic a new workout song/mps a trip to the thrift store for new clothes while you are losing weight a lovely hot bubble bath a long walk w/a friend and/or your dog a redbox movie rental (with healthy snacks of course) some new craft materials I could go on and on, but you get the idea! Have fun with it. I know some people create a point system for their rewards, such as so many lbs lost or so many visits to the gym, etc. > > Hi everybody, > My name is Amber and I'm still pretty new to the podcast, but I'm tearing through them trying to get caught up (plus I can't get enough!). I'm on episode 19 and I've only been doing this since Feb. 25. Here's my issue...I don't know how to reward myself. I used to do it with food, but obviously that won't work anymore. I don't have the money to go out and buy myself something every single time I go to the gym, but I need some way of rewarding myself for going. Maybe the reward should be the weight I'm losing, but that's not immediate enough for me. Or maybe the problem is with my motivation...I don't know...Anyway, my point is that my motivation doesn't keep me going to the gym. Does anyone have any advice for me? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2010 Report Share Posted March 8, 2010 Love these:) Sent on the Sprint® Now Network from my BlackBerry® Re: Hello everyone How about some mini rewards, such as: a new nail polish or cosmetic a new workout song/mps a trip to the thrift store for new clothes while you are losing weight a lovely hot bubble bath a long walk w/a friend and/or your dog a redbox movie rental (with healthy snacks of course) some new craft materials I could go on and on, but you get the idea! Have fun with it. I know some people create a point system for their rewards, such as so many lbs lost or so many visits to the gym, etc. > > Hi everybody, > My name is Amber and I'm still pretty new to the podcast, but I'm tearing through them trying to get caught up (plus I can't get enough!). I'm on episode 19 and I've only been doing this since Feb. 25. Here's my issue...I don't know how to reward myself. I used to do it with food, but obviously that won't work anymore. I don't have the money to go out and buy myself something every single time I go to the gym, but I need some way of rewarding myself for going. Maybe the reward should be the weight I'm losing, but that's not immediate enough for me. Or maybe the problem is with my motivation...I don't know...Anyway, my point is that my motivation doesn't keep me going to the gym. Does anyone have any advice for me? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2010 Report Share Posted March 8, 2010 Love these:) Sent on the Sprint® Now Network from my BlackBerry® Re: Hello everyone How about some mini rewards, such as: a new nail polish or cosmetic a new workout song/mps a trip to the thrift store for new clothes while you are losing weight a lovely hot bubble bath a long walk w/a friend and/or your dog a redbox movie rental (with healthy snacks of course) some new craft materials I could go on and on, but you get the idea! Have fun with it. I know some people create a point system for their rewards, such as so many lbs lost or so many visits to the gym, etc. > > Hi everybody, > My name is Amber and I'm still pretty new to the podcast, but I'm tearing through them trying to get caught up (plus I can't get enough!). I'm on episode 19 and I've only been doing this since Feb. 25. Here's my issue...I don't know how to reward myself. I used to do it with food, but obviously that won't work anymore. I don't have the money to go out and buy myself something every single time I go to the gym, but I need some way of rewarding myself for going. Maybe the reward should be the weight I'm losing, but that's not immediate enough for me. Or maybe the problem is with my motivation...I don't know...Anyway, my point is that my motivation doesn't keep me going to the gym. Does anyone have any advice for me? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2010 Report Share Posted March 11, 2010 Rewards are something I struggle with, and often I reward myself time to do things for myself. I can¹t spend money right now, so I¹d love ideas on non-monetary rewards. Here are some of mine: self-manicure bubble bath time off to read a book or sleep soak my feet at home facial I¹d love to get other ideas on rewards that don¹t require any money. beth http://www.efg-consulting.net >> How about some mini rewards, such as: >> a new nail polish or cosmetic >> a new workout song/mps >> a trip to the thrift store for new clothes while you are losing weight >> a lovely hot bubble bath >> a long walk w/a friend and/or your dog >> a redbox movie rental (with healthy snacks of course) >> some new craft materials Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2010 Report Share Posted March 15, 2010 regarding rewards: how about just the way you FEEL when we eat like a naturally slender person (i.e. Hari Hachi Bu, food that sits well in our stomachs)?? Recently, that has been reward enough. I guess I don't think too much about rewards. I am just feeling very grateful lately... and I am also trying to eat less and feel good about it. And, I feel great. Call me anorexic, but I feel better when I eat less (physically and emotionally). I am just happy to be moving AWAY from old binge habits AMEN. Moving towards doing more yoga Some wisdom from Kung Fu Panda (a movie): You are too concerned with what was and what will be. There is a saying: The past is history, the future is a mystery, and right now is a gift; that's why they call it present... much love y'all. ALL On Thu, Mar 11, 2010 at 8:17 AM, beth <egaba@...> wrote: > > > Rewards are something I struggle with, and often I reward myself time to do > things for myself. I can¹t spend money right now, so I¹d love ideas on > non-monetary rewards. > > Here are some of mine: > self-manicure > bubble bath > time off to read a book or sleep > soak my feet > at home facial > > I¹d love to get other ideas on rewards that don¹t require any money. > > > beth > http://www.efg-consulting.net > > >> How about some mini rewards, such as: > > >> a new nail polish or cosmetic > >> a new workout song/mps > >> a trip to the thrift store for new clothes while you are losing weight > >> a lovely hot bubble bath > >> a long walk w/a friend and/or your dog > >> a redbox movie rental (with healthy snacks of course) > >> some new craft materials > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2010 Report Share Posted July 25, 2010 Hi, and welcome to the group. I think it is great that you are having your Heller So soon. As young ad you are I think you will find the recovery very manable. How long have you been dealin with Achalasia? How bad is it? I had my Heller in 2005 and it is the best decision I ever made. Sent from my iPhone On Jul 25, 2010, at 7:45 AM, " Irene " <iblokhuis@...> wrote: I am new to this group and fairly new to the diagnosis of Achalasia. I am to have a Hellor myotomy on August 23. I live in Ontario Canada... don't know if I am the only Canadian on here or not. I don't know anyone else who has had this disease and I am trying to learn as much as I can from various websites etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2010 Report Share Posted July 25, 2010 My surgeon suspected i had achalasia in february but i had to wait for all the test, the mammonetry being the longest wait. i get very little food in me, have lost over 50lbs and am feeling weak. my blood levels are low from the lack of nutrition as well.. so i am looking forward to having this done, anything will be better than what i go through now. do you have to be screened for esophogeal cancer once a year , i will after my surgery I am new to this group and fairly new to the diagnosis of Achalasia. I am to have a Hellor myotomy on August 23. I live in Ontario Canada... don't know if I am the only Canadian on here or not. I don't know anyone else who has had this disease and I am trying to learn as much as I can from various websites etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2010 Report Share Posted July 25, 2010 I do go for a checkup once a year, and after my Heller I was able to eat right away. I still need a little water to get some things down, but it is no big deal. Sent from my iPhone On Jul 25, 2010, at 5:03 PM, Irene Blokhuis <iblokhuis@...> wrote: My surgeon suspected i had achalasia in february but i had to wait for all the test, the mammonetry being the longest wait. i get very little food in me, have lost over 50lbs and am feeling weak. my blood levels are low from the lack of nutrition as well.. so i am looking forward to having this done, anything will be better than what i go through now. do you have to be screened for esophogeal cancer once a year , i will after my surgery I am new to this group and fairly new to the diagnosis of Achalasia. I am to have a Hellor myotomy on August 23. I live in Ontario Canada... don't know if I am the only Canadian on here or not. I don't know anyone else who has had this disease and I am trying to learn as much as I can from various websites etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2010 Report Share Posted July 26, 2010 Vinnie,           hello I was on the web and found out if your  Magnesium is low it could cause stomach problems like spasms..I was wondering if my Magnesium could be low if that could be why I was having stomach spasms and my stomach feeling so sick all the time.. I just want to get back to nomal. I have 3 childern and a wonderful husband I am starting to feel like I am ruining there life at time's we don't go anywhere becsuse of me always not felling well enough to go anywhere I just don't know what to do. I don't even want to eat because my stomach hurts so bad. and I am going to call my dr. in the morning . Most days I set on my couch with my heating pad on that about the only thing that sometime's helps ease the pain..I think I am going to call my dr. in the morning ________________________________ From: Vinnie Murray <coachvmurray@...> " achalasia " <achalasia > Sent: Sun, July 25, 2010 6:35:23 PM Subject: Re: Hello everyone  I do go for a checkup once a year, and after my Heller I was able to eat right away. I still need a little water to get some things down, but it is no big deal. Sent from my iPhone On Jul 25, 2010, at 5:03 PM, Irene Blokhuis <iblokhuis@...> wrote: My surgeon suspected i had achalasia in february but i had to wait for all the test, the mammonetry being the longest wait. i get very little food in me, have lost over 50lbs and am feeling weak. my blood levels are low from the lack of nutrition as well.. so i am looking forward to having this done, anything will be better than what i go through now. do you have to be screened for esophogeal cancer once a year , i will after my surgery I am new to this group and fairly new to the diagnosis of Achalasia. I am to have a Hellor myotomy on August 23. I live in Ontario Canada... don't know if I am the only Canadian on here or not. I don't know anyone else who has had this disease and I am trying to learn as much as I can from various websites etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2010 Report Share Posted July 26, 2010 Good idea to call your doctor. I did not experience any if the post op issues you are. Do not feel bad about your family. You are on track to a " normal " life and I am sure your family is there for you. Bottom line is that they need you healthy, and you are on that track. Sent from my iPhone On Jul 25, 2010, at 6:09 PM, Angel <blackpanther1977@...> wrote: Vinnie, hello I was on the web and found out if your Magnesium is low it could cause stomach problems like spasms..I was wondering if my Magnesium could be low if that could be why I was having stomach spasms and my stomach feeling so sick all the time.. I just want to get back to nomal. I have 3 childern and a wonderful husband I am starting to feel like I am ruining there life at time's we don't go anywhere becsuse of me always not felling well enough to go anywhere I just don't know what to do. I don't even want to eat because my stomach hurts so bad. and I am going to call my dr. in the morning . Most days I set on my couch with my heating pad on that about the only thing that sometime's helps ease the pain..I think I am going to call my dr. in the morning ________________________________ From: Vinnie Murray <coachvmurray@...> " achalasia " <achalasia > Sent: Sun, July 25, 2010 6:35:23 PM Subject: Re: Hello everyone I do go for a checkup once a year, and after my Heller I was able to eat right away. I still need a little water to get some things down, but it is no big deal. Sent from my iPhone On Jul 25, 2010, at 5:03 PM, Irene Blokhuis <iblokhuis@...> wrote: My surgeon suspected i had achalasia in february but i had to wait for all the test, the mammonetry being the longest wait. i get very little food in me, have lost over 50lbs and am feeling weak. my blood levels are low from the lack of nutrition as well.. so i am looking forward to having this done, anything will be better than what i go through now. do you have to be screened for esophogeal cancer once a year , i will after my surgery I am new to this group and fairly new to the diagnosis of Achalasia. I am to have a Hellor myotomy on August 23. I live in Ontario Canada... don't know if I am the only Canadian on here or not. I don't know anyone else who has had this disease and I am trying to learn as much as I can from various websites etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2010 Report Share Posted July 26, 2010 Irene I can get you in contact with a couple of people in Cancada that have the disease. Please feel free to cantact me and I will attempt to conncect you with them. in Georgia. <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia </FONT><IMG src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " > ________________________________ From: Irene <iblokhuis@...> achalasia Sent: Sun, July 25, 2010 8:45:29 AM Subject: Hello everyone  I am new to this group and fairly new to the diagnosis of Achalasia. I am to have a Hellor myotomy on August 23. I live in Ontario Canada... don't know if I am the only Canadian on here or not. I don't know anyone else who has had this disease and I am trying to learn as much as I can from various websites etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 Hi, I am a new memeber, just joined over the weekend. I have an almost 5yr old son, Austin and an almost 2yr old daughter, Madelyn. We live in South Australia. My son, Austin has us puzzled. He has an absolutely amazing memory and eye for detail but his behaviour can be difficult to understand and control at times, and worsening as he becomes older. Don't get me wrong, he is still an adorable and loving little boy, but can be extremely exhausting at times. He hasn't been formally diagnosed at this point, but a trip to a different GP for a chest infection, when he was just over 3, had her asking us questions about his behavious as she believed he had similar traits to her son with aspergers. At the time we were cross that she could put that idea into our heads without offering advice about what to do about it. We have noticed some oddities about him since he was about 2, but brushed them off as children develop differently an that is quite normal. Just recently however, my sisters boys were diagnosed with AS and we started discussing the behaviours, many of which we see in Austin. We haven't taken him to be tested, although there was a time there where I was really struggling as his sister was not sleeping (we later discovered it was food allergies which were keeping her awake screaming all night)and without the sleep I needed, my patience was wearing thin. I went in for a Child and Youth Health check up, seeking help and answers as I just wasn't coping but they weren't all that helpful. They said didn't know about aspergers and to take him back to the GP if we were worried. We hung in there, and Madelyn started consuming a lot of our time in medical visits as we discovered her food intolerances (salyciilates and fructose) and adjusted her diet, resulting in full nights sleep and much happier, more patient parents and children! Of course, Austin's behaviour didn't change, but we were better equipped to deal with it and continue with our positive parenting approach. I also looked for some tips online and in books on how to best manage his behaviour, and mostly the tip about being direct/literal, and consistent, stateing what we want him to do (rather than what we want him not to do) has been useful. However he is almost ready to start school, and while I can handle his meltdowns at home, and my husband has learned from copying me, he will be out of our hands during the school day, which has made me start to rethink our decision not to get him tested for fear of " labelling " him for life. I can't make friends for him, and I can't stop teachers from thinking he is just a " naughty " child. I mentioned it to my mother-in-law who thinks I am being silly, and that if there was a problem it would be like you see on those current affair proigrams, where the kids just will NOT do as they are told, and the parents are at their wit's end(of course no relation of hers could be anything but 100% normal! LOL). She doesn't seem to " get " that it is a sliding scale and that many children can go through lives with problems and not living to their fulll potential, simply because it isn't picked up. She looks after him sometimes though, and I don't think she has managed to watch him once without complaining to me about his behaviour, so while she thinks he's normal, she does acknowl;edge that ghe is " difficult " . My husband really doesn't like the idea of testing him either. So I am on my own (other than the newfound support of my sister who now understands the importance of picking it up early) in wanting to find out if there really is a problem. As our daughter grows, we are seeing how different she is to him in terms of development and the way she talks - she can paraphrase in her own words, but Austin sees things in black or white and at teh same age, was probably more repeating things he had heard, perhaps not really understanding what he was saying, and we all thought he had an amazing vocabulary as he spoke much more than other kids his age. Howeve when we couldn't understand him, he would completely melt down, and keep repeating the same phrase over and over, even though we didn't know what it meant. I had to go through lots of different possibilities until I finally arrived (if I was lucky!)at what message he was trying to get across (usually there was a word he had heard wrong and we couldn't understand his version of it), whereas the same thing happens with our daughter, and instead of melting down into a sobbing mess, she just tries to find another way to explain what she means. He has a superb eye for detail and will notice changes in an instant, that take us parents a week to pick up! He has always asked about and remembered street names, and from about 20 months old, would always know where we were going, based on the direction we took, even miles away from the destination. He can be read a book once and memorise every word, we often catch him " reading " to his sister and not skipping a word, even though he can't actually read yet, and if I am reading, say The Three Little Pigs and read " the wolf came BY " instead of " the wolf came ALONG " (as it is written in his book) then I am in trouble. He is super sensitive to smell and will sometimes tell me that I smell different some days, and has an obsession with lavender - HAS to pick it and collect it (which nearly resulted in him being flattened by a car as he broke free from my grip when he spotted a lavender bush out the corner of his eye on the weekend). He creates his own little routines, like running to the end of the driveway, picking daisies and stuffing them in the letterbox EVERY time he gets out of the car. If he can't do his routines for some reason we have a huge melt down - I have tried the normal advice of ignoring him, but this just makes him worse, and I have left him for up to 2hrs in this state without improvement and eventually gone back to my original vice hold and deep breathing which works much easier than the normal " ignoring bad behaviour/acknowledge good behaviour " technique. He is very visual minded, and often the technique of giving him a visual cue with a verbal one is helpful. Having said that though, he is obsessed with music - so he can listen to music, just not words, and if we put an instruction to music we also get results. We are often singing in this household, and even when he wanted to learn how to spell his own name, and was getting frustrated trying to remember all the letters, we put them to a tune and he remembered them in an instant - you should have seen the smile fling across his face when we did that! So basically I have joined this group with the hope of finding out a little more about what makes these amazing but less understood children tick, hopefully find some great advice on things that may work to reduce the melt-down problems we are having, and better help his transition to school life. I look forward to chatting more with you, getting to know you all and your wonderful children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 I would encourage you to have him tested for autism. Kids who are different get labelled in one way or another, so why not make it an accurate lable that will come with benefits? It is likely that the school will suggest testing anyway, once he starts. Once you have a diagnosis, then you can get appropriate help. Whether you have him tested or not, whether you get a diagnosis or not, he will still be the same boy with the same problems. Autism, like most things in life, won't go away just because you (or in this case, others) pretend it isn't there. Many people with autism lead a happy and useful - and successful - life, and there is no reason why your son couldn't be one of them if he gets the help he needs. We have never regretted having our son tested. It doesn't solve all your problems, but it does help with knowing where to begin looking for answers. On 18/10/2010 9:47 PM, austysmum wrote:  Hi, I am a new memeber, just joined over the weekend. I have an almost 5yr old son, Austin and an almost 2yr old daughter, Madelyn. We live in South Australia. My son, Austin has us puzzled. He has an absolutely amazing memory and eye for detail but his behaviour can be difficult to understand and control at times, and worsening as he becomes older. Don't get me wrong, he is still an adorable and loving little boy, but can be extremely exhausting at times. He hasn't been formally diagnosed at this point, but a trip to a different GP for a chest infection, when he was just over 3, had her asking us questions about his behavious as she believed he had similar traits to her son with aspergers. At the time we were cross that she could put that idea into our heads without offering advice about what to do about it. We have noticed some oddities about him since he was about 2, but brushed them off as children develop differently an that is quite normal. Just recently however, my sisters boys were diagnosed with AS and we started discussing the behaviours, many of which we see in Austin. We haven't taken him to be tested, although there was a time there where I was really struggling as his sister was not sleeping (we later discovered it was food allergies which were keeping her awake screaming all night)and without the sleep I needed, my patience was wearing thin. I went in for a Child and Youth Health check up, seeking help and answers as I just wasn't coping but they weren't all that helpful. They said didn't know about aspergers and to take him back to the GP if we were worried. We hung in there, and Madelyn started consuming a lot of our time in medical visits as we discovered her food intolerances (salyciilates and fructose) and adjusted her diet, resulting in full nights sleep and much happier, more patient parents and children! Of course, Austin's behaviour didn't change, but we were better equipped to deal with it and continue with our positive parenting approach. I also looked for some tips online and in books on how to best manage his behaviou! r, and mostly the tip about being direct/literal, and consistent, stateing what we want him to do (rather than what we want him not to do) has been useful. However he is almost ready to start school, and while I can handle his meltdowns at home, and my husband has learned from copying me, he will be out of our hands during the school day, which has made me start to rethink our decision not to get him tested for fear of "labelling" him for life. I can't make friends for him, and I can't stop teachers from thinking he is just a "naughty" child. I mentioned it to my mother-in-law who thinks I am being silly, and that if there was a problem it would be like you see on those current affair proigrams, where the kids just will NOT do as they are told, and the parents are at their wit's end(of course no relation of hers could be anything but 100% normal! LOL). She doesn't seem to "get" that it is a sliding scale and that many children can go through lives with problems and not living to their fulll potential, simply because it isn't picked up. She looks after him sometimes though, and I don't think she has managed to watch him once without complaining to me about his behaviour, so while she thinks he's normal, she does acknowl;edge that ghe is "difficult". My husband really doesn't like the idea of testing him either. So I am on my own (other than the newfound support of my sister who now understands the importance of picking it up early) in wanting to find out if there really is a problem. As our daughter grows, we are seeing how different she is to him in terms of development and the way she talks - she can paraphrase in her own words, but Austin sees things in black or white and at teh same age, was probably more repeating things he had heard, perhaps not really understanding what he was saying, and we all thought he had an amazing vocabulary as he spoke much more than other kids his age. Howeve when we couldn't understand him, he would completely melt down, and keep repeating the same phrase over and over, even though we didn't know what it meant. I had to go through lots of different possibilities until I finally arrived (if I was lucky!)at what message he was trying to get across (usually there was a word he had heard wrong and we couldn't understand his version of it), whereas the same thing happens with our daughter, and instead of melting down into a sobbing mess, she just tries to find another way to explain what she means. He has a superb eye for detail and will notice changes in an instant, that take us parents a week to pick up! He has always asked about and remembered street names, and from about 20 months old, would always know where we were going, based on the direction we took, even miles away from the destination. He can be read a book once and memorise every word, we often catch him "reading" to his sister and not skipping a word, even though he can't actually read yet, and if I am reading, say The Three Little Pigs and read "the wolf came BY" instead of "the wolf came ALONG" (as it is written in his book) then I am in trouble. He is super sensitive to smell and will sometimes tell me that I smell different some days, and has an obsession with lavender - HAS to pick it and collect it (which nearly resulted in him being flattened by a car as he broke free from my grip when he spotted a lavender bush out the corner of his eye on the weekend). He creates h! is own little routines, like running to the end of the driveway, picking daisies and stuffing them in the letterbox EVERY time he gets out of the car. If he can't do his routines for some reason we have a huge melt down - I have tried the normal advice of ignoring him, but this just makes him worse, and I have left him for up to 2hrs in this state without improvement and eventually gone back to my original vice hold and deep breathing which works much easier than the normal "ignoring bad behaviour/acknowledge good behaviour" technique. He is very visual minded, and often the technique of giving him a visual cue with a verbal one is helpful. Having said that though, he is obsessed with music - so he can listen to music, just not words, and if we put an instruction to music we also get results. We are often singing in this household, and even when he wanted to learn how to spell his own name, and was getting frustrated trying to remember all the letters, we put t! hem to a tune and he remembered them in an instant - you should have seen the smile fling across his face when we did that! So basically I have joined this group with the hope of finding out a little more about what makes these amazing but less understood children tick, hopefully find some great advice on things that may work to reduce the melt-down problems we are having, and better help his transition to school life. I look forward to chatting more with you, getting to know you all and your wonderful children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 I agree with kevin, either way if your son is having trouble he is going to get some kind of label. Atleast if its autism you have some kind of direction to start. Believe me I know how you feel, my son who will be 4 this month was just diagnosed with autism last month. And even though I knew going into the testing that something just wasnt right with him and that he most likely did have autism, it still doesnt help prepare me for the confermation. To have a stranger confirm my greatest fears about my child is one of the hardest things I have ever went through (and I'v been through some tough things.) I felt like a part of me died that day, and I'm not sure if I can ever get it back. But those are my own issues I am trying to deal with, so I dont let anyone see (especially my kids) how much I am struggling with all of this on a daily basis. But as far as my son, he isalready making good progress. We started him on the GFCF diet,b12,probiotic,multivitamins,omega 3 and calcium, and I'm already seeing some great changes. Anyway,I could talk forever,sorry. I think once the loved ones that surround our son come to terms with whats really going on with your son, you can begin to do everything you can to help him be his best. I had some people around me like that, and i listened to them too. If I hadnt I would have had my son tested a year ago, I wish I would have listened to my mommy gut then. It just comes down to you, you are his mom, and you know him better than anyone. So what does your mommy gut tell you to do? I know im new to this to,but if you need someone to talk to I will be here. Lea Hi, I am a new memeber, just joined over the weekend. I have an almost 5yr old son, Austin and an almost 2yr old daughter, Madelyn. We live in South Australia.My son, Austin has us puzzled. He has an absolutely amazing memory and eye for detail but his behaviour can be difficult to understand and control at times, and worsening as he becomes older. Don't get me wrong, he is still an adorable and loving little boy, but can be extremely exhausting at times. He hasn't been formally diagnosed at this point, but a trip to a different GP for a chest infection, when he was just over 3, had her asking us questions about his behavious as she believed he had similar traits to her son with aspergers. At the time we were cross that she could put that idea into our heads without offering advice about what to do about it. We have noticed some oddities about him since he was about 2, but brushed them off as children develop differently an that is quite normal. Just recently however, my sisters boys were diagnosed with AS and we started discussing the behaviours, many of which we see in Austin.We haven't taken him to be tested, although there was a time there where I was really struggling as his sister was not sleeping (we later discovered it was food allergies which were keeping her awake screaming all night)and without the sleep I needed, my patience was wearing thin. I went in for a Child and Youth Health check up, seeking help and answers as I just wasn't coping but they weren't all that helpful. They said didn't know about aspergers and to take him back to the GP if we were worried. We hung in there, and Madelyn started consuming a lot of our time in medical visits as we discovered her food intolerances (salyciilates and fructose) and adjusted her diet, resulting in full nights sleep and much happier, more patient parents and children! Of course, Austin's behaviour didn't change, but we were better equipped to deal with it and continue with our positive parenting approach. I also looked for some tips online and in books on how to best manage his behaviou! r, and mostly the tip about being direct/literal, and consistent, stateing what we want him to do (rather than what we want him not to do) has been useful.However he is almost ready to start school, and while I can handle his meltdowns at home, and my husband has learned from copying me, he will be out of our hands during the school day, which has made me start to rethink our decision not to get him tested for fear of "labelling" him for life. I can't make friends for him, and I can't stop teachers from thinking he is just a "naughty" child. I mentioned it to my mother-in-law who thinks I am being silly, and that if there was a problem it would be like you see on those current affair proigrams, where the kids just will NOT do as they are told, and the parents are at their wit's end(of course no relation of hers could be anything but 100% normal! LOL). She doesn't seem to "get" that it is a sliding scale and that many children can go through lives with problems and not living to their fulll potential, simply because it isn't picked up. She looks after him sometimes though, and I don't think she has managed to watch him once without complaining to me about his behaviour, so while she thinks he's normal, she does acknowl;edge that ghe is "difficult". My husband really doesn't like the idea of testing him either. So I am on my own (other than the newfound support of my sister who now understands the importance of picking it up early) in wanting to find out if there really is a problem.As our daughter grows, we are seeing how different she is to him in terms of development and the way she talks - she can paraphrase in her own words, but Austin sees things in black or white and at teh same age, was probably more repeating things he had heard, perhaps not really understanding what he was saying, and we all thought he had an amazing vocabulary as he spoke much more than other kids his age. Howeve when we couldn't understand him, he would completely melt down, and keep repeating the same phrase over and over, even though we didn't know what it meant. I had to go through lots of different possibilities until I finally arrived (if I was lucky!)at what message he was trying to get across (usually there was a word he had heard wrong and we couldn't understand his version of it), whereas the same thing happens with our daughter, and instead of melting down into a sobbing mess, she just tries to find another way to explain what she means.He has a superb eye for detail and will notice changes in an instant, that take us parents a week to pick up! He has always asked about and remembered street names, and from about 20 months old, would always know where we were going, based on the direction we took, even miles away from the destination. He can be read a book once and memorise every word, we often catch him "reading" to his sister and not skipping a word, even though he can't actually read yet, and if I am reading, say The Three Little Pigs and read "the wolf came BY" instead of "the wolf came ALONG" (as it is written in his book) then I am in trouble. He is super sensitive to smell and will sometimes tell me that I smell different some days, and has an obsession with lavender - HAS to pick it and collect it (which nearly resulted in him being flattened by a car as he broke free from my grip when he spotted a lavender bush out the corner of his eye on the weekend). He creates h! is own little routines, like running to the end of the driveway, picking daisies and stuffing them in the letterbox EVERY time he gets out of the car. If he can't do his routines for some reason we have a huge melt down - I have tried the normal advice of ignoring him, but this just makes him worse, and I have left him for up to 2hrs in this state without improvement and eventually gone back to my original vice hold and deep breathing which works much easier than the normal "ignoring bad behaviour/acknowledge good behaviour" technique. He is very visual minded, and often the technique of giving him a visual cue with a verbal one is helpful. Having said that though, he is obsessed with music - so he can listen to music, just not words, and if we put an instruction to music we also get results. We are often singing in this household, and even when he wanted to learn how to spell his own name, and was getting frustrated trying to remember all the letters, we put t! hem to a tune and he remembered them in an instant - you should have seen the smile fling across his face when we did that! So basically I have joined this group with the hope of finding out a little more about what makes these amazing but less understood children tick, hopefully find some great advice on things that may work to reduce the melt-down problems we are having, and better help his transition to school life. I look forward to chatting more with you, getting to know you all and your wonderful children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 I had gotten (my 7yr old) tested for autisum but the test were inconclusive that's what the doctor said because he is completely non-verbal they cant do some part of the test I guess I dont know about that Im looking for another doctor but its some what difficult right now since he's on ohio medicaid which os about the same as the medical card thats through welfare that my other two children are on. When he was about 2 or so I had him tested every way you could possibly test a little boy and all the catscans and mri's and even genetic testing all came back fine. I assume that the doctor just diagnosed him MRDD just so we could call it something but that same doctor to this day still says that he's mentally disabled I as his mom dont buy it cause Im with him on a daily basis and everything I've read and others that have kids that have been diagnosed Sensory Processing Disorder I think thats what has if you go by what he does day to day Ive started a journal to keep track of his moods and other things he does like I have to ask if anyone else has this issue he constantly is tearing up toilet paper and paper towels into little shreds! I have to practically keep them under lock and key cause everyone that I know just tells me to put it out of his reach well the only problem with this is he is almost as tall as I am so putting it out of his reach is pretty much putting it out of my own as well. I know what you mean about being exausting, I have three boys and the only one that isnt a real handfull is my 10yr old now dont get me wrong he has his days but since he's gotten older the issues with him are mainly doing school work and controling his temper when it comes to my 3yr old Jordan who being only 3 doesnt understand that his 10yr old brother wants to be left alone sometimes and gets mad when he doesnt leave him alone. is an adorable loving little boy until something happens to trigger a meltdown which since he doesnt talk can be an issue trying to figure out what happened to cause the ear piercing screaming and the kicking that he does during a melt down I've kinda excepted that he may be slightly mentally disabled but severely like the doctors say no I cant I wont and I also have to ask does anyone have issues with picky eating from the time he could eat adult foods has been stuck on three things PB & J sandwiches, Pizza and Chicken Nuggets. Thats all he will eat Ive try to get him to eat other things like lunchmeat ot noodles of some kind if I can manage to get him to try one bite thats all I get is that one bite and at first I didnt mind the PB & J but Jordan is allergic to peanuts thank goodness he's not severely allergic and can be in the same room while eats a sandwich but that could change as he gets older! Right now though is pizza he could eat it everyday for every meal if I'd let him so going on that Ive tried to make breakfast pizzas well that didnt work he only like pepperoni! If anyone else has had this problem and over came it please Im open to any and all suggestions Thank you I gotta get off here talk to everyone later Sue From: Lea Jensen <lea_m_jensen@...>Autism and Aspergers Treatment Sent: Mon, October 18, 2010 8:03:34 AMSubject: Re: Re: Hello everyone I agree with kevin, either way if your son is having trouble he is going to get some kind of label. Atleast if its autism you have some kind of direction to start. Believe me I know how you feel, my son who will be 4 this month was just diagnosed with autism last month. And even though I knew going into the testing that something just wasnt right with him and that he most likely did have autism, it still doesnt help prepare me for the confermation. To have a stranger confirm my greatest fears about my child is one of the hardest things I have ever went through (and I'v been through some tough things.) I felt like a part of me died that day, and I'm not sure if I can ever get it back. But those are my own issues I am trying to deal with, so I dont let anyone see (especially my kids) how much I am struggling with all of this on a daily basis. But as far as my son, he isalready making good progress. We started him on the GFCF diet,b12,probiotic,multivitamins,omega 3 and calcium, and I'm already seeing some great changes. Anyway,I could talk forever,sorry. I think once the loved ones that surround our son come to terms with whats really going on with your son, you can begin to do everything you can to help him be his best. I had some people around me like that, and i listened to them too. If I hadnt I would have had my son tested a year ago, I wish I would have listened to my mommy gut then. It just comes down to you, you are his mom, and you know him better than anyone. So what does your mommy gut tell you to do? I know im new to this to,but if you need someone to talk to I will be here. Lea Hi, I am a new memeber, just joined over the weekend. I have an almost 5yr old son, Austin and an almost 2yr old daughter, Madelyn. We live in South Australia.My son, Austin has us puzzled. He has an absolutely amazing memory and eye for detail but his behaviour can be difficult to understand and control at times, and worsening as he becomes older. Don't get me wrong, he is still an adorable and loving little boy, but can be extremely exhausting at times. He hasn't been formally diagnosed at this point, but a trip to a different GP for a chest infection, when he was just over 3, had her asking us questions about his behavious as she believed he had similar traits to her son with aspergers. At the time we were cross that she could put that idea into our heads without offering advice about what to do about it. We have noticed some oddities about him since he was about 2, but brushed them off as children develop differently an that is quite normal. Just recently however, my sisters boys were diagnosed with AS and we started discussing the behaviours, many of which we see in Austin.We haven't taken him to be tested, although there was a time there where I was really struggling as his sister was not sleeping (we later discovered it was food allergies which were keeping her awake screaming all night)and without the sleep I needed, my patience was wearing thin. I went in for a Child and Youth Health check up, seeking help and answers as I just wasn't coping but they weren't all that helpful. They said didn't know about aspergers and to take him back to the GP if we were worried. We hung in there, and Madelyn started consuming a lot of our time in medical visits as we discovered her food intolerances (salyciilates and fructose) and adjusted her diet, resulting in full nights sleep and much happier, more patient parents and children! Of course, Austin's behaviour didn't change, but we were better equipped to deal with it and continue with our positive parenting approach. I also looked for some tips online and in books on how to best manage his behaviou! r, and mostly the tip about being direct/literal, and consistent, stateing what we want him to do (rather than what we want him not to do) has been useful.However he is almost ready to start school, and while I can handle his meltdowns at home, and my husband has learned from copying me, he will be out of our hands during the school day, which has made me start to rethink our decision not to get him tested for fear of "labelling" him for life. I can't make friends for him, and I can't stop teachers from thinking he is just a "naughty" child. I mentioned it to my mother-in-law who thinks I am being silly, and that if there was a problem it would be like you see on those current affair proigrams, where the kids just will NOT do as they are told, and the parents are at their wit's end(of course no relation of hers could be anything but 100% normal! LOL). She doesn't seem to "get" that it is a sliding scale and that many children can go through lives with problems and not living to their fulll potential, simply because it isn't picked up. She looks after him sometimes though, and I don't think she has managed to watch him once without complaining to me about his behaviour, so while she thinks he's normal, she does acknowl;edge that ghe is "difficult". My husband really doesn't like the idea of testing him either. So I am on my own (other than the newfound support of my sister who now understands the importance of picking it up early) in wanting to find out if there really is a problem.As our daughter grows, we are seeing how different she is to him in terms of development and the way she talks - she can paraphrase in her own words, but Austin sees things in black or white and at teh same age, was probably more repeating things he had heard, perhaps not really understanding what he was saying, and we all thought he had an amazing vocabulary as he spoke much more than other kids his age. Howeve when we couldn't understand him, he would completely melt down, and keep repeating the same phrase over and over, even though we didn't know what it meant. I had to go through lots of different possibilities until I finally arrived (if I was lucky!)at what message he was trying to get across (usually there was a word he had heard wrong and we couldn't understand his version of it), whereas the same thing happens with our daughter, and instead of melting down into a sobbing mess, she just tries to find another way to explain what she means.He has a superb eye for detail and will notice changes in an instant, that take us parents a week to pick up! He has always asked about and remembered street names, and from about 20 months old, would always know where we were going, based on the direction we took, even miles away from the destination. He can be read a book once and memorise every word, we often catch him "reading" to his sister and not skipping a word, even though he can't actually read yet, and if I am reading, say The Three Little Pigs and read "the wolf came BY" instead of "the wolf came ALONG" (as it is written in his book) then I am in trouble. He is super sensitive to smell and will sometimes tell me that I smell different some days, and has an obsession with lavender - HAS to pick it and collect it (which nearly resulted in him being flattened by a car as he broke free from my grip when he spotted a lavender bush out the corner of his eye on the weekend). He creates h! is own little routines, like running to the end of the driveway, picking daisies and stuffing them in the letterbox EVERY time he gets out of the car. If he can't do his routines for some reason we have a huge melt down - I have tried the normal advice of ignoring him, but this just makes him worse, and I have left him for up to 2hrs in this state without improvement and eventually gone back to my original vice hold and deep breathing which works much easier than the normal "ignoring bad behaviour/acknowledge good behaviour" technique. He is very visual minded, and often the technique of giving him a visual cue with a verbal one is helpful. Having said that though, he is obsessed with music - so he can listen to music, just not words, and if we put an instruction to music we also get results. We are often singing in this household, and even when he wanted to learn how to spell his own name, and was getting frustrated trying to remember all the letters, we put t! hem to a tune and he remembered them in an instant - you should have seen the smile fling across his face when we did that! So basically I have joined this group with the hope of finding out a little more about what makes these amazing but less understood children tick, hopefully find some great advice on things that may work to reduce the melt-down problems we are having, and better help his transition to school life. I look forward to chatting more with you, getting to know you all and your wonderful children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2010 Report Share Posted October 19, 2010 Sue, My son Austin is a VERY picky eter - he has made food one of his " routines " , so it's the same thingfor breakfast, lunch and snacks every day (because I am at work during the week, and m husband looks after the kids until 2pm when he laves for the afternoon shift, and it's just easier to let him have his foods), then I try to get him to eat somethng different for dinner each night. Dinner is always a HUGE battle. With normal kids, they just say, keep putting it in front of them and when they get used to seeing the foods, and are hungry enough, they will try it. I ive my daughter rewards for tryingallher fods, and none to him when he won't try things, thinking he would want what she gets (ttention, a special gamne, sticker, tiny bit of icecream etc.) I even try hiding vegetables, but the tricks that work for other mums just don't work here. All I expoectis that he tastes and swallows ONE bite of each thing on his plate. Many nights he will go to bed without eating a single mouthful. I don't make a huge fuss about it anymore - that got us nowhere, both of us would be angry at each other. I e him involved cooking too, but not even that makes him try somethinghe dosnt want to. He loves chcolate, so we can very occasionally have a win by telling him to close his eyes and pretend it's chocolate. He also likes counting and knowing how many bites he has to have - I hardly put anything on hs plate, so it would be nice if he would eat it all but he doesn't seem to " get " eating ALL of it, no mtter how muc is on the plate. He needs it quantified in bites. And then we often have to feed him those bites. Our baby girl sits there feeding herself happily and we are feeding our oldest! For a while there he would ony eat plain toast for breakfast, and he would get difficult well before lunch. We put it down to hunger and decided to transition him onto cereal. First we let him pick, and of course he picked the most sugary unhealthy thing he could. I let him have it, but when the box was finished, I told him that they weren't selling that anymore, the shops were on a short supply and they were just on the shelves for decoration. He had a meltdown, but I managed to show him an equally colourful box (much healthier cereal) and told him that all the kindy kids eat it, and now he is at kindy he should at least try it. We made a deal that he could choose again from the cereal isle if he didn't like it AFTER the box was gone. Luckily it was a big box, and while it took a little while to warm to it, once he was eating it, it was a routine food and now all he will eat for breakfast. It gets him through the morning a lot better than a single piece of dry toast was! We also have a set day once a week for pancakes or eggs, which he chooses but it has to be the same day every week, so it's Saturday as that is consistently an easy day to cook breakfast. For lunch he always wants a fritz and sauce sandwhich (a horrible lunch sausage full of rubbish that I hate givng him). We managed to break it up so he will have cheese and vegemite one week,then fritz and sauce the next. If he demands the fritz on a cheese week, we remind him hat it was fritz week last week, and he tends to deal with it. I am thinking of perhaps ceating a food calendar with pictures, so that he can see what he will be given ahead of time, and when we have a problem, we can point to it and show him. Routine, and plenty of warning with visual aid seems to help. He doesn't like textured foods or eating with his fingers (even as a toddler, finger foods and finger painting were his worst nightmares) so I try to limit them, but still offer occasionally in the hope that he may get used to them one day! > >Â > >>Hi, I am a new memeber, just joined over the weekend. I have an almost 5yr old > >>son, Austin and an almost 2yr old daughter, Madelyn. We live in South Australia. > >> > >>My son, Austin has us puzzled. He has an absolutely amazing memory and eye for > >>detail but his behaviour can be difficult to understand and control at times, > >>and worsening as he becomes older. Don't get me wrong, he is still an adorable > >>and loving little boy, but can be extremely exhausting at times. He hasn't been > >>formally diagnosed at this point, but a trip to a different GP for a chest > >>infection, when he was just over 3, had her asking us questions about his > >>behavious as she believed he had similar traits to her son with aspergers. At > >>the time we were cross that she could put that idea into our heads without > >>offering advice about what to do about it. We have noticed some oddities about > >>him since he was about 2, but brushed them off as children develop differently > >>an that is quite normal. Just recently however, my sisters boys were diagnosed > >>with AS and we started discussing the behaviours, many of which we see in > >>Austin. > >> > >>We haven't taken him to be tested, although there was a time there where I was > >>really struggling as his sister was not sleeping (we later discovered it was > >>food allergies which were keeping her awake screaming all night)and without the > >>sleep I needed, my patience was wearing thin. I went in for a Child and Youth > >>Health check up, seeking help and answers as I just wasn't coping but they > >>weren't all that helpful. They said didn't know about aspergers and to take him > >>back to the GP if we were worried. We hung in there, and Madelyn started > >>consuming a lot of our time in medical visits as we discovered her food > >>intolerances (salyciilates and fructose) and adjusted her diet, resulting in > >>full nights sleep and much happier, more patient parents and children! Of > >>course, Austin's behaviour didn't change, but we were better equipped to deal > >>with it and continue with our positive parenting approach. I also looked for > >>some tips online and in books on how to best manage his behaviou! r, and mostly > >>the tip about being direct/literal, and consistent, stateing what we want him to > >>do (rather than what we want him not to do) has been useful. > >> > >>However he is almost ready to start school, and while I can handle his meltdowns > >>at home, and my husband has learned from copying me, he will be out of our hands > >>during the school day, which has made me start to rethink our decision not to > >>get him tested for fear of " labelling " him for life. I can't make friends for > >>him, and I can't stop teachers from thinking he is just a " naughty " child. > >> > >> > >>I mentioned it to my mother-in-law who thinks I am being silly, and that if > >>there was a problem it would be like you see on those current affair proigrams, > >>where the kids just will NOT do as they are told, and the parents are at their > >>wit's end(of course no relation of hers could be anything but 100% normal! LOL). > >>She doesn't seem to " get " that it is a sliding scale and that many children can > >>go through lives with problems and not living to their fulll potential, simply > >>because it isn't picked up. She looks after him sometimes though, and I don't > >>think she has managed to watch him once without complaining to me about his > >>behaviour, so while she thinks he's normal, she does acknowl;edge that ghe is > >> " difficult " . My husband really doesn't like the idea of testing him either. So I > >>am on my own (other than the newfound support of my sister who now understands > >>the importance of picking it up early) in wanting to find out if there really is > >>a problem. > >> > >>As our daughter grows, we are seeing how different she is to him in terms of > >>development and the way she talks - she can paraphrase in her own words, but > >>Austin sees things in black or white and at teh same age, was probably more > >>repeating things he had heard, perhaps not really understanding what he was > >>saying, and we all thought he had an amazing vocabulary as he spoke much more > >>than other kids his age. Howeve when we couldn't understand him, he would > >>completely melt down, and keep repeating the same phrase over and over, even > >>though we didn't know what it meant. I had to go through lots of different > >>possibilities until I finally arrived (if I was lucky!)at what message he was > >>trying to get across (usually there was a word he had heard wrong and we > >>couldn't understand his version of it), whereas the same thing happens with our > >>daughter, and instead of melting down into a sobbing mess, she just tries to > >>find another way to explain what she means. > >> > >>He has a superb eye for detail and will notice changes in an instant, that take > >>us parents a week to pick up! He has always asked about and remembered street > >>names, and from about 20 months old, would always know where we were going, > >>based on the direction we took, even miles away from the destination. He can be > >>read a book once and memorise every word, we often catch him " reading " to his > >>sister and not skipping a word, even though he can't actually read yet, and if I > >>am reading, say The Three Little Pigs and read " the wolf came BY " instead of > >> " the wolf came ALONG " (as it is written in his book) then I am in trouble. He is > >>super sensitive to smell and will sometimes tell me that I smell different some > >>days, and has an obsession with lavender - HAS to pick it and collect it (which > >>nearly resulted in him being flattened by a car as he broke free from my grip > >>when he spotted a lavender bush out the corner of his eye on the weekend). He > >>creates h! is own little routines, like running to the end of the driveway, > >>picking daisies and stuffing them in the letterbox EVERY time he gets out of the > >>car. If he can't do his routines for some reason we have a huge melt down - I > >>have tried the normal advice of ignoring him, but this just makes him worse, and > >>I have left him for up to 2hrs in this state without improvement and eventually > >>gone back to my original vice hold and deep breathing which works much easier > >>than the normal " ignoring bad behaviour/acknowledge good behaviour " technique. > >>He is very visual minded, and often the technique of giving him a visual cue > >>with a verbal one is helpful. Having said that though, he is obsessed with music > >>- so he can listen to music, just not words, and if we put an instruction to > >>music we also get results. We are often singing in this household, and even when > >>he wanted to learn how to spell his own name, and was getting frustrated trying > >>to remember all the letters, we put t! hem to a tune and he remembered them in > >>an instant - you should have seen the smile fling across his face when we did > >>that! > >> > >> > >>So basically I have joined this group with the hope of finding out a little more > >>about what makes these amazing but less understood children tick, hopefully find > >>some great advice on things that may work to reduce the melt-down problems we > >>are having, and better help his transition to school life. I look forward to > >>chatting more with you, getting to know you all and your wonderful children. > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2010 Report Share Posted October 19, 2010 I just wanted to say that I understand your problem. I was in the similar state with my son earlier this year. I knew that something wasn't right, but it took a lot to convince my husband to look further. Now that Luke has been diagnosed with Aspergers, my husband is much more understanding and is willing to help, but his parents are like your in-laws who don't want to think that their grandson isn't " normal " . My sister-in-law's son is just the same as Luke, but they won't admit to anything and since she is their daughter, they have convinced her that he is ok. I don't regret for one minute getting Luke tested because it has given me the ability to find ways to help him and to understand more about what is going on with him. He doesn't melt down over nothing, but if I don't understand why, it just adds to frustration for both of us. I understand what you mean about " labelling " your son, but for me, it's not about labels, but about helping him be the best he can be. Without knowing how to help, he can do that. It seems to me that you are already doing a lot of things that help him cope better, but perhaps there are more that you need to find out. Starting school will be a big change in his routine, and knowing how to deal with that will help both of you. You will also need to find a school that will support him. I live in NSW and not all schools are supportive. They will say they are, but you will need to really investigate that. If you can find a good school before he starts, it will make it that much easier, but they won't be able to help him properly without a diagnosis. That is just my two cents worth. I hope it helps you. Sometimes you just have to listen to your motherly instincts about what to do. I have found them to be a great help!!! All the best!!! Judy > austysmum <austysmum@...> wrote: > > Hi, I am a new memeber, just joined over the weekend. I have an almost > 5yr old son, Austin and an almost 2yr old daughter, Madelyn. We live in > South Australia. > > My son, Austin has us puzzled. He has an absolutely amazing memory and > eye for detail but his behaviour can be difficult to understand and > control at times, and worsening as he becomes older. Don't get me > wrong, he is still an adorable and loving little boy, but can be > extremely exhausting at times. He hasn't been formally diagnosed at > this point, but a trip to a different GP for a chest infection, when he > was just over 3, had her asking us questions about his behavious as she > believed he had similar traits to her son with aspergers. At the time we > were cross that she could put that idea into our heads without offering > advice about what to do about it. We have noticed some oddities about > him since he was about 2, but brushed them off as children develop > differently an that is quite normal. Just recently however, my sisters > boys were diagnosed with AS and we started discussing the behaviours, > many of which we see in Austin. > > We haven't taken him to be tested, although there was a time there where > I was really struggling as his sister was not sleeping (we later > discovered it was food allergies which were keeping her awake screaming > all night)and without the sleep I needed, my patience was wearing thin. > I went in for a Child and Youth Health check up, seeking help and > answers as I just wasn't coping but they weren't all that helpful. They > said didn't know about aspergers and to take him back to the GP if we > were worried. We hung in there, and Madelyn started consuming a lot of > our time in medical visits as we discovered her food intolerances > (salyciilates and fructose) and adjusted her diet, resulting in full > nights sleep and much happier, more patient parents and children! Of > course, Austin's behaviour didn't change, but we were better equipped to > deal with it and continue with our positive parenting approach. I also > looked for some tips online and in books on how to best manage his > behaviour, and mostly the tip about being direct/literal, and > consistent, stateing what we want him to do (rather than what we want > him not to do) has been useful. > > However he is almost ready to start school, and while I can handle his > meltdowns at home, and my husband has learned from copying me, he will > be out of our hands during the school day, which has made me start to > rethink our decision not to get him tested for fear of " labelling " him > for life. I can't make friends for him, and I can't stop teachers from > thinking he is just a " naughty " child. > > I mentioned it to my mother-in-law who thinks I am being silly, and that > if there was a problem it would be like you see on those current affair > proigrams, where the kids just will NOT do as they are told, and the > parents are at their wit's end(of course no relation of hers could be > anything but 100% normal! LOL). She doesn't seem to " get " that it is a > sliding scale and that many children can go through lives with problems > and not living to their fulll potential, simply because it isn't picked > up. She looks after him sometimes though, and I don't think she has > managed to watch him once without complaining to me about his behaviour, > so while she thinks he's normal, she does acknowl;edge that ghe is > " difficult " . My husband really doesn't like the idea of testing him > either. So I am on my own (other than the newfound support of my sister > who now understands the importance of picking it up early) in wanting to > find out if there really is a problem. > > As our daughter grows, we are seeing how different she is to him in > terms of development and the way she talks - she can paraphrase in her > own words, but Austin sees things in black or white and at teh same age, > was probably more repeating things he had heard, perhaps not really > understanding what he was saying, and we all thought he had an amazing > vocabulary as he spoke much more than other kids his age. Howeve when > we couldn't understand him, he would completely melt down, and keep > repeating the same phrase over and over, even though we didn't know what > it meant. I had to go through lots of different possibilities until I > finally arrived (if I was lucky!)at what message he was trying to get > across (usually there was a word he had heard wrong and we couldn't > understand his version of it), whereas the same thing happens with our > daughter, and instead of melting down into a sobbing mess, she just > tries to find another way to explain what she means. > > He has a superb eye for detail and will notice changes in an instant, > that take us parents a week to pick up! He has always asked about and > remembered street names, and from about 20 months old, would always know > where we were going, based on the direction we took, even miles away > from the destination. He can be read a book once and memorise every > word, we often catch him " reading " to his sister and not skipping a > word, even though he can't actually read yet, and if I am reading, say > The Three Little Pigs and read " the wolf came BY " instead of " the wolf > came ALONG " (as it is written in his book) then I am in trouble. He is > super sensitive to smell and will sometimes tell me that I smell > different some days, and has an obsession with lavender - HAS to pick it > and collect it (which nearly resulted in him being flattened by a car as > he broke free from my grip when he spotted a lavender bush out the > corner of his eye on the weekend). He creates his own little routines, > like running to the end of the driveway, picking daisies and stuffing > them in the letterbox EVERY time he gets out of the car. If he can't do > his routines for some reason we have a huge melt down - I have tried the > normal advice of ignoring him, but this just makes him worse, and I have > left him for up to 2hrs in this state without improvement and eventually > gone back to my original vice hold and deep breathing which works much > easier than the normal " ignoring bad behaviour/acknowledge good > behaviour " technique. He is very visual minded, and often the technique > of giving him a visual cue with a verbal one is helpful. Having said > that though, he is obsessed with music - so he can listen to music, just > not words, and if we put an instruction to music we also get results. > We are often singing in this household, and even when he wanted to learn > how to spell his own name, and was getting frustrated trying to remember > all the letters, we put them to a tune and he remembered them in an > instant - you should have seen the smile fling across his face when we > did that! > > So basically I have joined this group with the hope of finding out a > little more about what makes these amazing but less understood children > tick, hopefully find some great advice on things that may work to reduce > the melt-down problems we are having, and better help his transition to > school life. I look forward to chatting more with you, getting to know > you all and your wonderful children. Quote Link to comment Share on other sites More sharing options...
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