Guest guest Posted April 4, 2011 Report Share Posted April 4, 2011 Hi Reggi and Kathy, Just want you both to know I loved your responses. I am in a mood today where I am trying to sort out why I feel so down and blue and it came to me this morning that I get a feeling of condemnation on me. It is from my childhood growing up and was how I was trained to think, my mom was always mad at me. She focused her discontent onto me and so I got the idea it was MY JOB to make her happy. She is like that still and is 92 years old and STILL very very very unhappy! It is hard to figure out what is inside me bothering me sometimes but I have learned over time that it is this " feeling " I get. I was also once married to an alcoholic and did it with him for years too. Of course it doesn't help when THEY pour it on you like it actually is your responsibility to make THEM feel happy when it is not. And my four kids I get it with them and my grandkids too, funny not so much my disabled boy because he doesn't talk but I no doubt feel the same burden for him also when I think I should be doing more for him. It is just this stupid feeling like a ton of weight on me that my JOB in life is to give up my own happiness and dedicate myself to other people's but the trouble with that whole thing, which I have experienced now, is that you can go years and years and years and get pretty warn out because all you have ever have done seems to be worthless since they are STILL so unhappy and needy and communicate this to you all the time!! So I agree with you Reggi that we should not isolate ourselves and that support is very important, and you do not get this with a lot of people. Like with me I am soooo supportive of others and ask none for myself and GOOD GRIEF I am the one with the HEAVY burden but it is invisible and it is my job to keep it that way with some people, or else I am a bad person, been called names, rejected and that sort of thing...which tends to hurt me so much that I continue to carry the heavy load for others when really I should dump it on them and walk away, maybe not realistically but at least figuratively. Do it in my head so to speak. I am working on it. And all you others out there with disabled children to raise I say THAT IS ENOUGH for us to give and other people ought to just BACK OFF and take responsibility for their own happiness, maybe even GIVE some to you from time to time. Does ANYBODY know what I am talking about? I just had my daughter to the hospital for a procedure where they stuck a needle in her back to try to stop pain, gave her a shot of cortisone I think, had lunch and am now going to the gym to work out. I joined Gold's Gym about two weeks ago and doing well getting in shape for summer. Much love to you all and give yourselves a break today! Carolyn OR ;o) csadler239 wrote: > > > > Well I lost my response when I hit the wrong button so here i try > again! (You know the second try is never as good as the first lol) > I do feel responsible,how could I not he is my child. That is what my > gut tells me,I at times have that chip on my shoulder and it is a hard > one to push off. I even find myself defensive when my mother and > husband interjects with their opinions/suggestions/comments. I REALLY > TRY NOT TOOOOO! I know it is me, I feel like there is a secret place > in me/I store all the things I can't openly feel/express,it's the > melting pot of shame,blame,fear,regret. It is easy to go to the dark > place,the why me,what did I do,Lord was I that bad of a child place.I > have been depressed and got medical attention for it. Best thing I > ever did!! Once on meds for a while I started to feel better/more > alive than I have in years. I still can easily bring myself down when > Im under a lot of pressure but overall with meds and finding the > little bright spots in life, I feel pretty good. I have even > considered counseling but not sure if it works, Any advice? > > Most people just want to be accepted/at the end of the day that's all > I want for my child. I accept my son just the way he is,my heart and > soul lives for him, Ive accepted his differences,Ive accepted my job > in life is to be his Mom. > kathy > > > > > > > > I think it's the most normal thing in the world to feel defensive > and insecure > > when people are talking about what is wrong with your kid. I > remember feeling > > like there was an unspoken subtext that went something like " if only > Reggi was a > > better mother, this boy would be less aggressive, better able to > adapt to the > > school, more responsive to authority, blah blah blah " . When my son > was in > > pre-school his behavior really shocked the preschool teachers. I > remember some > > really confrontational and hostile conversations. They absolutely > blamed me. > > And they were absolutely wrong. And not very smart or resourceful. > > > > I have to admit that I've said some things that I really regret when > I was > > feeling defensive and angry. And I was unable to really listen when > I felt that > > way. I apologized and I've tried to learn. Now, when I feel myself > starting to > > tense up and feel defensive, I remind myself that the teachers > probably feel the > > same way, like they are being blamed in some way. And I remember my > job- to be > > my child's advocate, to pull a group of people together who will > give him the > > tools and support he needs. Doesn't matter what they think of me. > > > > Do I remember correctly that autism and working with the school is > relatively > > new for you? Give yourself a break- be gentle with yourself. Eat a > lot of > > chocolate. And don't isolate yourself. Talk to friends, find a local > support > > group. They will be able to help you in so many ways. This is really > > important! If you are depressed, take these feelings seriously and get > > treatment. Talk to your doctor about what you are going through. > This is not > > the time to practice martyrdom. Your child needs you to be strong, > and this bad > > time won't last forever. > > > > > > Reggi Levin > > reggi@... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2011 Report Share Posted April 4, 2011 Ditto, Genie Bottle. I feel the same way about the "experts" and all of their conflicting, sometimes even ridiculous advice (; Frustrated I couldn't agree more. They may be the (so called) experts but, who is truly there in the situation to see it as it really is? You are and your in charge. Listen to their advice and follow what you agree with. If you don't like them and they don't like your attitude. You probably still have to deal with them. I have found myself grinding my teeth at times. You know your kid best and sometimes you have to hurt people's feelings a little to get that point across. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2011 Report Share Posted April 4, 2011 Had time to think about this when I was on the treadmill just now, and want to add that the trick is too to NOT do what others do, to NOT act the victim and project that others need to work harder to make YOU happy! With all the bad influence around us it is hard to avoid it and to not copy it. I sometimes tend to slip but then I catch myself and go the other way because I am definitely NOT a victim, I choose to be happy and fulfilled! I think that is all it is, a CHOICE for us all... Lots of bad influence and not enough good around us, but you can find it if you search for it, and listen to the people that have it and block the others out... Carolyn ;o) Carolyn wrote: > Hi Reggi and Kathy, Just want you both to know I loved your responses. > > I am in a mood today where I am trying to sort out why I feel so down > and blue and it came to me this morning that I get a feeling of > condemnation on me. It is from my childhood growing up and was how I was > trained to think, my mom was always mad at me. She focused her > discontent onto me and so I got the idea it was MY JOB to make her > happy. She is like that still and is 92 years old and STILL very very > very unhappy! > > It is hard to figure out what is inside me bothering me sometimes but I > have learned over time that it is this " feeling " I get. I was also once > married to an alcoholic and did it with him for years too. Of course it > doesn't help when THEY pour it on you like it actually is your > responsibility to make THEM feel happy when it is not. > > And my four kids I get it with them and my grandkids too, funny not so > much my disabled boy because he doesn't talk but I no doubt feel the > same burden for him also when I think I should be doing more for him. It > is just this stupid feeling like a ton of weight on me that my JOB in > life is to give up my own happiness and dedicate myself to other > people's but the trouble with that whole thing, which I have experienced > now, is that you can go years and years and years and get pretty warn > out because all you have ever have done seems to be worthless since they > are STILL so unhappy and needy and communicate this to you all the time!! > > So I agree with you Reggi that we should not isolate ourselves and that > support is very important, and you do not get this with a lot of people. > Like with me I am soooo supportive of others and ask none for myself and > GOOD GRIEF I am the one with the HEAVY burden but it is invisible and it > is my job to keep it that way with some people, or else I am a bad > person, been called names, rejected and that sort of thing...which tends > to hurt me so much that I continue to carry the heavy load for others > when really I should dump it on them and walk away, maybe not > realistically but at least figuratively. Do it in my head so to speak. > > I am working on it. And all you others out there with disabled children > to raise I say THAT IS ENOUGH for us to give and other people ought to > just BACK OFF and take responsibility for their own happiness, maybe > even GIVE some to you from time to time. > > Does ANYBODY know what I am talking about? I just had my daughter to the > hospital for a procedure where they stuck a needle in her back to try to > stop pain, gave her a shot of cortisone I think, had lunch and am now > going to the gym to work out. I joined Gold's Gym about two weeks ago > and doing well getting in shape for summer. > > Much love to you all and give yourselves a break today! > Carolyn OR ;o) > > > > csadler239 wrote: > >> >> Well I lost my response when I hit the wrong button so here i try >> again! (You know the second try is never as good as the first lol) >> I do feel responsible,how could I not he is my child. That is what my >> gut tells me,I at times have that chip on my shoulder and it is a hard >> one to push off. I even find myself defensive when my mother and >> husband interjects with their opinions/suggestions/comments. I REALLY >> TRY NOT TOOOOO! I know it is me, I feel like there is a secret place >> in me/I store all the things I can't openly feel/express,it's the >> melting pot of shame,blame,fear,regret. It is easy to go to the dark >> place,the why me,what did I do,Lord was I that bad of a child place.I >> have been depressed and got medical attention for it. Best thing I >> ever did!! Once on meds for a while I started to feel better/more >> alive than I have in years. I still can easily bring myself down when >> Im under a lot of pressure but overall with meds and finding the >> little bright spots in life, I feel pretty good. I have even >> considered counseling but not sure if it works, Any advice? >> >> Most people just want to be accepted/at the end of the day that's all >> I want for my child. I accept my son just the way he is,my heart and >> soul lives for him, Ive accepted his differences,Ive accepted my job >> in life is to be his Mom. >> kathy >> >> >> >>> I think it's the most normal thing in the world to feel defensive >>> >> and insecure >> >>> when people are talking about what is wrong with your kid. I >>> >> remember feeling >> >>> like there was an unspoken subtext that went something like " if only >>> >> Reggi was a >> >>> better mother, this boy would be less aggressive, better able to >>> >> adapt to the >> >>> school, more responsive to authority, blah blah blah " . When my son >>> >> was in >> >>> pre-school his behavior really shocked the preschool teachers. I >>> >> remember some >> >>> really confrontational and hostile conversations. They absolutely >>> >> blamed me. >> >>> And they were absolutely wrong. And not very smart or resourceful. >>> >>> I have to admit that I've said some things that I really regret when >>> >> I was >> >>> feeling defensive and angry. And I was unable to really listen when >>> >> I felt that >> >>> way. I apologized and I've tried to learn. Now, when I feel myself >>> >> starting to >> >>> tense up and feel defensive, I remind myself that the teachers >>> >> probably feel the >> >>> same way, like they are being blamed in some way. And I remember my >>> >> job- to be >> >>> my child's advocate, to pull a group of people together who will >>> >> give him the >> >>> tools and support he needs. Doesn't matter what they think of me. >>> >>> Do I remember correctly that autism and working with the school is >>> >> relatively >> >>> new for you? Give yourself a break- be gentle with yourself. Eat a >>> >> lot of >> >>> chocolate. And don't isolate yourself. Talk to friends, find a local >>> >> support >> >>> group. They will be able to help you in so many ways. This is really >>> important! If you are depressed, take these feelings seriously and get >>> treatment. Talk to your doctor about what you are going through. >>> >> This is not >> >>> the time to practice martyrdom. Your child needs you to be strong, >>> >> and this bad >> >>> time won't last forever. >>> >>> >>> Reggi Levin >>> reggi@... >>> >>> >> > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 I truly understand frustration! I truly do! I raised 6 kids, one manic psychotic with ADHD, now I am raising my 5 year old autistic granddaughter. Plus I have 5 other grandchildren. I also must add that my husband is in early stage alzhiemers which doesn't help the stress factor much. There are days I want to run screaming into the night but so far I haven't done it yet. I have no support team to help me out but I must say this group has strengthened me more than I can say.Plus my Faith. So to everyone out there going through it, hang in there. We must all stick together for each other.I love you all, LeaFrom: Carolyn <charper777@...>Autism and Aspergers Treatment Sent: Mon, April 4, 2011 12:16:37 PMSubject: Re: Re: frustrated Hi Reggi and Kathy, Just want you both to know I loved your responses.I am in a mood today where I am trying to sort out why I feel so down and blue and it came to me this morning that I get a feeling of condemnation on me. It is from my childhood growing up and was how I was trained to think, my mom was always mad at me. She focused her discontent onto me and so I got the idea it was MY JOB to make her happy. She is like that still and is 92 years old and STILL very very very unhappy!It is hard to figure out what is inside me bothering me sometimes but I have learned over time that it is this "feeling" I get. I was also once married to an alcoholic and did it with him for years too. Of course it doesn't help when THEY pour it on you like it actually is your responsibility to make THEM feel happy when it is not.And my four kids I get it with them and my grandkids too, funny not so much my disabled boy because he doesn't talk but I no doubt feel the same burden for him also when I think I should be doing more for him. It is just this stupid feeling like a ton of weight on me that my JOB in life is to give up my own happiness and dedicate myself to other people's but the trouble with that whole thing, which I have experienced now, is that you can go years and years and years and get pretty warn out because all you have ever have done seems to be worthless since they are STILL so unhappy and needy and communicate this to you all the time!!So I agree with you Reggi that we should not isolate ourselves and that support is very important, and you do not get this with a lot of people. Like with me I am soooo supportive of others and ask none for myself and GOOD GRIEF I am the one with the HEAVY burden but it is invisible and it is my job to keep it that way with some people, or else I am a bad person, been called names, rejected and that sort of thing...which tends to hurt me so much that I continue to carry the heavy load for others when really I should dump it on them and walk away, maybe not realistically but at least figuratively. Do it in my head so to speak.I am working on it. And all you others out there with disabled children to raise I say THAT IS ENOUGH for us to give and other people ought to just BACK OFF and take responsibility for their own happiness, maybe even GIVE some to you from time to time.Does ANYBODY know what I am talking about? I just had my daughter to the hospital for a procedure where they stuck a needle in her back to try to stop pain, gave her a shot of cortisone I think, had lunch and am now going to the gym to work out. I joined Gold's Gym about two weeks ago and doing well getting in shape for summer.Much love to you all and give yourselves a break today!Carolyn OR ;o)csadler239 wrote:>>>> Well I lost my response when I hit the wrong button so here i try > again! (You know the second try is never as good as the first lol)> I do feel responsible,how could I not he is my child. That is what my > gut tells me,I at times have that chip on my shoulder and it is a hard > one to push off. I even find myself defensive when my mother and > husband interjects with their opinions/suggestions/comments. I REALLY > TRY NOT TOOOOO! I know it is me, I feel like there is a secret place > in me/I store all the things I can't openly feel/express,it's the > melting pot of shame,blame,fear,regret. It is easy to go to the dark > place,the why me,what did I do,Lord was I that bad of a child place.I > have been depressed and got medical attention for it. Best thing I > ever did!! Once on meds for a while I started to feel better/more > alive than I have in years. I still can easily bring myself down when > Im under a lot of pressure but overall with meds and finding the > little bright spots in life, I feel pretty good. I have even > considered counseling but not sure if it works, Any advice?>> Most people just want to be accepted/at the end of the day that's all > I want for my child. I accept my son just the way he is,my heart and > soul lives for him, Ive accepted his differences,Ive accepted my job > in life is to be his Mom.> kathy>> > >> >> > I think it's the most normal thing in the world to feel defensive > and insecure> > when people are talking about what is wrong with your kid. I > remember feeling> > like there was an unspoken subtext that went something like "if only > Reggi was a> > better mother, this boy would be less aggressive, better able to > adapt to the> > school, more responsive to authority, blah blah blah". When my son > was in> > pre-school his behavior really shocked the preschool teachers. I > remember some> > really confrontational and hostile conversations. They absolutely > blamed me.> > And they were absolutely wrong. And not very smart or resourceful.> >> > I have to admit that I've said some things that I really regret when > I was> > feeling defensive and angry. And I was unable to really listen when > I felt that> > way. I apologized and I've tried to learn. Now, when I feel myself > starting to> > tense up and feel defensive, I remind myself that the teachers > probably feel the> > same way, like they are being blamed in some way. And I remember my > job- to be> > my child's advocate, to pull a group of people together who will > give him the> > tools and support he needs. Doesn't matter what they think of me.> >> > Do I remember correctly that autism and working with the school is > relatively> > new for you? Give yourself a break- be gentle with yourself. Eat a > lot of> > chocolate. And don't isolate yourself. Talk to friends, find a local > support> > group. They will be able to help you in so many ways. This is really> > important! If you are depressed, take these feelings seriously and get> > treatment. Talk to your doctor about what you are going through. > This is not> > the time to practice martyrdom. Your child needs you to be strong, > and this bad> > time won't last forever.> >> >> > Reggi Levin> > reggi@...> >>> ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 I forgot to mention that if I did go running screaming into the night, they would follow me and drag me back kicking and screaming. > > > > > > > > > I think it's the most normal thing in the world to feel defensive > > and insecure > > > when people are talking about what is wrong with your kid. I > > remember feeling > > > like there was an unspoken subtext that went something like " if only > > Reggi was a > > > better mother, this boy would be less aggressive, better able to > > adapt to the > > > school, more responsive to authority, blah blah blah " . When my son > > was in > > > pre-school his behavior really shocked the preschool teachers. I > > remember some > > > really confrontational and hostile conversations. They absolutely > > blamed me. > > > And they were absolutely wrong. And not very smart or resourceful. > > > > > > I have to admit that I've said some things that I really regret when > > I was > > > feeling defensive and angry. And I was unable to really listen when > > I felt that > > > way. I apologized and I've tried to learn. Now, when I feel myself > > starting to > > > tense up and feel defensive, I remind myself that the teachers > > probably feel the > > > same way, like they are being blamed in some way. And I remember my > > job- to be > > > my child's advocate, to pull a group of people together who will > > give him the > > > tools and support he needs. Doesn't matter what they think of me. > > > > > > Do I remember correctly that autism and working with the school is > > relatively > > > new for you? Give yourself a break- be gentle with yourself. Eat a > > lot of > > > chocolate. And don't isolate yourself. Talk to friends, find a local > > support > > > group. They will be able to help you in so many ways. This is really > > > important! If you are depressed, take these feelings seriously and get > > > treatment. Talk to your doctor about what you are going through. > > This is not > > > the time to practice martyrdom. Your child needs you to be strong, > > and this bad > > > time won't last forever. > > > > > > > > > Reggi Levin > > > reggi@ > > > > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 That isn't true. They do not need to move classrooms. If you attend an under performing school they then have to give you options. Sent via DROID on Verizon Wireless re: frustrated> > > >  > > > > > > I've never posted to this list, but I am so angry about sad situationwith your son's school I am breaking my silence.  > > > > > > I also had a terrible time getting my son's school to makeappropriate accommodations.  They applied really inappropriatedisciplinary actions and mislead me on their activities.  It was awful,and my son was so unhappy during this time, really, really depressed. I'm thinking that maybe telling you what I did to finally get my son'sschool to work with us will give you some ideas.> > > > > > 1.  When things aren't going well, I called for IEP meetings veryfrequently to have the school team give me updates.  For about a year anda half I called for an IEP meeting every other week, which included all myson's teachers, the school counselors, spec ed teachers, and principal. I also included the district student services principal and districtpsychologist.  Yes, every other week with all those people.  I alsobrought along my son's BSC, and sometimes other support staff.  If theythought the accommodations were expensive, they could add up thecost in terms of their time for not making accomodations.> > > > > > 2.  Bring a laptop to every meeting and document what is said. Ask a lot of questions and take really good notes.  Like if theyare talking about letting my son take a break when he starts to get angry orfrustrated, I'd ask them to give me a step by step description of what thatmeant.  How did they know he was getting frustrated?  Where wouldhe go for this break?  How long was it?  Seeing me type all this upmade them very aware that I was holding them accountable.  Then at thenext IEP meeting, I'd ask for a follow up on this- how often did he takebreaks, how often did they miss his escalating, how was the re-entry after hisbreaks, etc.> > > > > > Good luck!!> >  > >  > > Reggi Levin> > reggi@> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 I totally get what your saying,we have to stay strong to hold all the threads together but man it is exausting at times...If I could shut the world out I would be a much happier person.. It is hard when we put ourselves last and try to make everyone else around us happy. Going to the gym sounds like a great way to have some " me " time. > > > > > > > > > > > > I think it's the most normal thing in the world to feel defensive > > > and insecure > > > > when people are talking about what is wrong with your kid. I > > > remember feeling > > > > like there was an unspoken subtext that went something like " if only > > > Reggi was a > > > > better mother, this boy would be less aggressive, better able to > > > adapt to the > > > > school, more responsive to authority, blah blah blah " . When my son > > > was in > > > > pre-school his behavior really shocked the preschool teachers. I > > > remember some > > > > really confrontational and hostile conversations. They absolutely > > > blamed me. > > > > And they were absolutely wrong. And not very smart or resourceful. > > > > > > > > I have to admit that I've said some things that I really regret when > > > I was > > > > feeling defensive and angry. And I was unable to really listen when > > > I felt that > > > > way. I apologized and I've tried to learn. Now, when I feel myself > > > starting to > > > > tense up and feel defensive, I remind myself that the teachers > > > probably feel the > > > > same way, like they are being blamed in some way. And I remember my > > > job- to be > > > > my child's advocate, to pull a group of people together who will > > > give him the > > > > tools and support he needs. Doesn't matter what they think of me. > > > > > > > > Do I remember correctly that autism and working with the school is > > > relatively > > > > new for you? Give yourself a break- be gentle with yourself. Eat a > > > lot of > > > > chocolate. And don't isolate yourself. Talk to friends, find a local > > > support > > > > group. They will be able to help you in so many ways. This is really > > > > important! If you are depressed, take these feelings seriously and get > > > > treatment. Talk to your doctor about what you are going through. > > > This is not > > > > the time to practice martyrdom. Your child needs you to be strong, > > > and this bad > > > > time won't last forever. > > > > > > > > > > > > Reggi Levin > > > > reggi@ > > > > > > > > > > > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 Unfortunately it is all about Labels not what is the best resolution. My son is considered SLD,to be in the smaller class(4 kids in this class) they have to change that but he doesn't meet the requirments.The teacher he has now is a great guy,he has been patient with and constantly surprises me with his new ideas on how to help my son thrive. The problem is the excitment level in the class/some period kids are resourced in,that is when he becomes overwhelmed. > > That isn't true. They do not need to move classrooms. If you attend an under > performing school they then have to give you options. > > Sent via DROID on Verizon Wireless > > Re: frustrated > > > > > > > > Thursday's meeting went well. Teacher and District ESE rep were helpful. The > ESE rep has a son with AS and was insightful to what is happening and is > reccomending that my son be moved to the smaller classroom. The problem is > the school's principle, he doesn't seem as motivated as we are.He called me > on Friday/I asked him why he won't approve my son to be moved. He said they > needed to have a staffing meeting to discuss if this is the right decision > etc(blah blah blah). I feel like he bent me over and blew a huge plume of > smoke up my @$$! I don't get how you call someone in from the district/have > your educated teacher attend and all are in agreement that based on my son's > reaction to the amount of stimulation in the class/the clear improvement > when he has one on one instruction,that you wouldn't decide for the good of > this child that this is a good decision. > I found out that because my son is ESE he is offered the Mckay scholarship > through the state of Florida. I applied right away and was in > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 I do know my child but the struggle is knowing what is best. That is the thing I struggle with the most. I want to make the right decision for the better of my child but at times I find myself second guessing my own judgement. I keep saying this.. One more time>>> I appreciate this forum/everyone's input. To me it gives me fresh perspective,in the past I have felt isolated thinking Iam doing this blind,seeing others who have more experience in dealing/coping/thriving gives me added strength to keep fighting. Thank you all again. > > I couldn't agree more. They may be the (so called) experts but, who is truly there in the situation to see it as it really is? You are and your in charge. Listen to their advice and follow what you agree with. If you don't like them and they don't like your attitude. You probably still have to deal with them. I have found myself grinding my teeth at times. You know your kid best and sometimes you have to hurt people's feelings a little to get that point across. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 I forgot to mention that if I did go running screaming into the night, they would follow me and drag me back kicking and screaming. Ain't it the truth! You just made me laugh out loud. Barbara = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 Hi Lea, I do understand the feeling of wanting to go running screaming into the night! I have felt that way a lot over the years, but not so much anymore thank God. Life is just hard and especially when we have been given others with more demanding than normal needs to somehow try to meet. I know it is hard but have learned that God's grace is sufficient, if we turn to Him He will give us His power to do what we must do. That is what grace is it is Power... Sometimes it doesn't feel like He is doing it, but He is, but too many forget to ask, I ask all the time, " Gooooood!! Help me!! " Really that is exactly what I pray. The Bible says we receive not because we ask not and when we ask we ask amiss. Most of us ask for the trial to GO AWAY like I always did, took time to learn it was not going away so I needed God's power to handle it..and eventually some of it did go away... So so far I have raised my four kids and still taking care of my 46 year old disabled kid at home, and the grandkids when they come. Used to take care of the three kids while my daughter worked full time as a mail carrier, she left early and got home late, and boy was I ever glad when I saw her car drive up! She finally had to retire due to fibromyalgia a few years ago and it was a blessing as I was about to drop in my tracks. Sad she had to quit work but was time she became a full time mom to three growing kids too! And she did get on disability praise God and retained her health insurance which has been important for her medical needs and her family's, such as her husband got a new hip last year all paid for. And I took her yesterday to the hospital and she got a shot of cortisone in her back and she was better today she said when we went to work out at the gym. She wants one in the other side now. So I say we must ask God to give us strength to carry our burdens, and then we can help others to carry theirs. Carolyn ;o) hay the sun is out again! woo hoo! Lea wrote: > > I forgot to mention that if I did go running screaming into the night, > they would follow me and drag me back kicking and screaming. > > > > > > > > > > > > > I think it's the most normal thing in the world to feel defensive > > > and insecure > > > > when people are talking about what is wrong with your kid. I > > > remember feeling > > > > like there was an unspoken subtext that went something like " if > only > > > Reggi was a > > > > better mother, this boy would be less aggressive, better able to > > > adapt to the > > > > school, more responsive to authority, blah blah blah " . When my son > > > was in > > > > pre-school his behavior really shocked the preschool teachers. I > > > remember some > > > > really confrontational and hostile conversations. They absolutely > > > blamed me. > > > > And they were absolutely wrong. And not very smart or resourceful. > > > > > > > > I have to admit that I've said some things that I really regret > when > > > I was > > > > feeling defensive and angry. And I was unable to really listen when > > > I felt that > > > > way. I apologized and I've tried to learn. Now, when I feel myself > > > starting to > > > > tense up and feel defensive, I remind myself that the teachers > > > probably feel the > > > > same way, like they are being blamed in some way. And I remember my > > > job- to be > > > > my child's advocate, to pull a group of people together who will > > > give him the > > > > tools and support he needs. Doesn't matter what they think of me. > > > > > > > > Do I remember correctly that autism and working with the school is > > > relatively > > > > new for you? Give yourself a break- be gentle with yourself. Eat a > > > lot of > > > > chocolate. And don't isolate yourself. Talk to friends, find a > local > > > support > > > > group. They will be able to help you in so many ways. This is really > > > > important! If you are depressed, take these feelings seriously > and get > > > > treatment. Talk to your doctor about what you are going through. > > > This is not > > > > the time to practice martyrdom. Your child needs you to be strong, > > > and this bad > > > > time won't last forever. > > > > > > > > > > > > Reggi Levin > > > > reggi@ > > > > > > > > > > > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 Hi Carolyn, I just read what you wrote. You are amazing and you give me hope that with God all things are possible. I hope you have a blessed day! Re: Re: frustrated Hi Lea, I do understand the feeling of wanting to go running screaming into the night! I have felt that way a lot over the years, but not so much anymore thank God. Life is just hard and especially when we have been given others with more demanding than normal needs to somehow try to meet. I know it is hard but have learned that God's grace is sufficient, if we turn to Him He will give us His power to do what we must do. That is what grace is it is Power... Sometimes it doesn't feel like He is doing it, but He is, but too many forget to ask, I ask all the time, "Gooooood!! Help me!!" Really that is exactly what I pray. The Bible says we receive not because we ask not and when we ask we ask amiss. Most of us ask for the trial to GO AWAY like I always did, took time to learn it was not going away so I needed God's power to handle it..and eventually some of it did go away... So so far I have raised my four kids and still taking care of my 46 year old disabled kid at home, and the grandkids when they come. Used to take care of the three kids while my daughter worked full time as a mail carrier, she left early and got home late, and boy was I ever glad when I saw her car drive up! She finally had to retire due to fibromyalgia a few years ago and it was a blessing as I was about to drop in my tracks. Sad she had to quit work but was time she became a full time mom to three growing kids too! And she did get on disability praise God and retained her health insurance which has been important for her medical needs and her family's, such as her husband got a new hip last year all paid for. And I took her yesterday to the hospital and she got a shot of cortisone in her back and she was better today she said when we went to work out at the gym. She wants one in the other side now. So I say we must ask God to give us strength to carry our burdens, and then we can help others to carry theirs. Carolyn ;o) hay the sun is out again! woo hoo! Lea wrote: > > I forgot to mention that if I did go running screaming into the night, > they would follow me and drag me back kicking and screaming. > > > > > > > > > > > > > I think it's the most normal thing in the world to feel defensive > > > and insecure > > > > when people are talking about what is wrong with your kid. I > > > remember feeling > > > > like there was an unspoken subtext that went something like "if > only > > > Reggi was a > > > > better mother, this boy would be less aggressive, better able to > > > adapt to the > > > > school, more responsive to authority, blah blah blah". When my son > > > was in > > > > pre-school his behavior really shocked the preschool teachers. I > > > remember some > > > > really confrontational and hostile conversations. They absolutely > > > blamed me. > > > > And they were absolutely wrong. And not very smart or resourceful. > > > > > > > > I have to admit that I've said some things that I really regret > when > > > I was > > > > feeling defensive and angry. And I was unable to really listen when > > > I felt that > > > > way. I apologized and I've tried to learn. Now, when I feel myself > > > starting to > > > > tense up and feel defensive, I remind myself that the teachers > > > probably feel the > > > > same way, like they are being blamed in some way. And I remember my > > > job- to be > > > > my child's advocate, to pull a group of people together who will > > > give him the > > > > tools and support he needs. Doesn't matter what they think of me. > > > > > > > > Do I remember correctly that autism and working with the school is > > > relatively > > > > new for you? Give yourself a break- be gentle with yourself. Eat a > > > lot of > > > > chocolate. And don't isolate yourself. Talk to friends, find a > local > > > support > > > > group. They will be able to help you in so many ways. This is really > > > > important! If you are depressed, take these feelings seriously > and get > > > > treatment. Talk to your doctor about what you are going through. > > > This is not > > > > the time to practice martyrdom. Your child needs you to be strong, > > > and this bad > > > > time won't last forever. > > > > > > > > > > > > Reggi Levin > > > > reggi@ > > > > > > > > > > > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2011 Report Share Posted April 7, 2011 Thank you Carolyn. My faith in our Lord keeps me going each and everyday. This world is hard enough without all the extra hardships but I know He doesn't put anything on us that we can't bare. I guess we all must be pretty strong for us to deal with some of the things we have to deal with. I do count my precious granddaughter as a major blessing in my life and everyday she teaches me something new. Just the other day there was a severe storm moving in and we walked out on the porch to see what the skies looked like. She started spinning around with her arms outstretched and singing "Jesus hugs, Jesus hugs". That is what she calls the wind. Instead of the weather making us nervous, there were 3 tornadoes that touched down nearby, we cuddled up together and listened to the rain because Jesus was there.It was really nice. True there are rough days but your letter brought out the truth to it. Thank you, LeaFrom: Carolyn <charper777@...>Autism and Aspergers Treatment Sent: Tue, April 5, 2011 12:19:37 PMSubject: Re: Re: frustrated Hi Lea, I do understand the feeling of wanting to go running screaming into the night! I have felt that way a lot over the years, but not so much anymore thank God. Life is just hard and especially when we have been given others with more demanding than normal needs to somehow try to meet. I know it is hard but have learned that God's grace is sufficient, if we turn to Him He will give us His power to do what we must do. That is what grace is it is Power... Sometimes it doesn't feel like He is doing it, but He is, but too many forget to ask, I ask all the time, "Gooooood!! Help me!!" Really that is exactly what I pray.The Bible says we receive not because we ask not and when we ask we ask amiss. Most of us ask for the trial to GO AWAY like I always did, took time to learn it was not going away so I needed God's power to handle it..and eventually some of it did go away...So so far I have raised my four kids and still taking care of my 46 year old disabled kid at home, and the grandkids when they come. Used to take care of the three kids while my daughter worked full time as a mail carrier, she left early and got home late, and boy was I ever glad when I saw her car drive up! She finally had to retire due to fibromyalgia a few years ago and it was a blessing as I was about to drop in my tracks. Sad she had to quit work but was time she became a full time mom to three growing kids too! And she did get on disability praise God and retained her health insurance which has been important for her medical needs and her family's, such as her husband got a new hip last year all paid for. And I took her yesterday to the hospital and she got a shot of cortisone in her back and she was better today she said when we went to work out at the gym. She wants one in the other side now.So I say we must ask God to give us strength to carry our burdens, and then we can help others to carry theirs.Carolyn ;o) hay the sun is out again! woo hoo!Lea wrote:>> I forgot to mention that if I did go running screaming into the night, > they would follow me and drag me back kicking and screaming.> > > > >> > > >> > > > I think it's the most normal thing in the world to feel defensive> > > and insecure> > > > when people are talking about what is wrong with your kid. I> > > remember feeling> > > > like there was an unspoken subtext that went something like "if > only> > > Reggi was a> > > > better mother, this boy would be less aggressive, better able to> > > adapt to the> > > > school, more responsive to authority, blah blah blah". When my son> > > was in> > > > pre-school his behavior really shocked the preschool teachers. I> > > remember some> > > > really confrontational and hostile conversations. They absolutely> > > blamed me.> > > > And they were absolutely wrong. And not very smart or resourceful.> > > >> > > > I have to admit that I've said some things that I really regret > when> > > I was> > > > feeling defensive and angry. And I was unable to really listen when> > > I felt that> > > > way. I apologized and I've tried to learn. Now, when I feel myself> > > starting to> > > > tense up and feel defensive, I remind myself that the teachers> > > probably feel the> > > > same way, like they are being blamed in some way. And I remember my> > > job- to be> > > > my child's advocate, to pull a group of people together who will> > > give him the> > > > tools and support he needs. Doesn't matter what they think of me.> > > >> > > > Do I remember correctly that autism and working with the school is> > > relatively> > > > new for you? Give yourself a break- be gentle with yourself. Eat a> > > lot of> > > > chocolate. And don't isolate yourself. Talk to friends, find a > local> > > support> > > > group. They will be able to help you in so many ways. This is really> > > > important! If you are depressed, take these feelings seriously > and get> > > > treatment. Talk to your doctor about what you are going through.> > > This is not> > > > the time to practice martyrdom. Your child needs you to be strong,> > > and this bad> > > > time won't last forever.> > > >> > > >> > > > Reggi Levin> > > > reggi@> > > >> > >> > >> >> >> > ------------------------------------> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2011 Report Share Posted April 7, 2011 Well said Carolyn and Lea, AmenFrom: Lea Hutto <leamadea@...>Autism and Aspergers Treatment Sent: Thu, April 7, 2011 2:22:51 AMSubject: Re: Re: frustrated Thank you Carolyn. My faith in our Lord keeps me going each and everyday. This world is hard enough without all the extra hardships but I know He doesn't put anything on us that we can't bare. I guess we all must be pretty strong for us to deal with some of the things we have to deal with. I do count my precious granddaughter as a major blessing in my life and everyday she teaches me something new. Just the other day there was a severe storm moving in and we walked out on the porch to see what the skies looked like. She started spinning around with her arms outstretched and singing "Jesus hugs, Jesus hugs". That is what she calls the wind. Instead of the weather making us nervous, there were 3 tornadoes that touched down nearby, we cuddled up together and listened to the rain because Jesus was there.It was really nice. True there are rough days but your letter brought out the truth to it. Thank you, LeaFrom: Carolyn <charper777@...>Autism and Aspergers Treatment Sent: Tue, April 5, 2011 12:19:37 PMSubject: Re: Re: frustrated Hi Lea, I do understand the feeling of wanting to go running screaming into the night! I have felt that way a lot over the years, but not so much anymore thank God. Life is just hard and especially when we have been given others with more demanding than normal needs to somehow try to meet. I know it is hard but have learned that God's grace is sufficient, if we turn to Him He will give us His power to do what we must do. That is what grace is it is Power... Sometimes it doesn't feel like He is doing it, but He is, but too many forget to ask, I ask all the time, "Gooooood!! Help me!!" Really that is exactly what I pray.The Bible says we receive not because we ask not and when we ask we ask amiss. Most of us ask for the trial to GO AWAY like I always did, took time to learn it was not going away so I needed God's power to handle it..and eventually some of it did go away...So so far I have raised my four kids and still taking care of my 46 year old disabled kid at home, and the grandkids when they come. Used to take care of the three kids while my daughter worked full time as a mail carrier, she left early and got home late, and boy was I ever glad when I saw her car drive up! She finally had to retire due to fibromyalgia a few years ago and it was a blessing as I was about to drop in my tracks. Sad she had to quit work but was time she became a full time mom to three growing kids too! And she did get on disability praise God and retained her health insurance which has been important for her medical needs and her family's, such as her husband got a new hip last year all paid for. And I took her yesterday to the hospital and she got a shot of cortisone in her back and she was better today she said when we went to work out at the gym. She wants one in the other side now.So I say we must ask God to give us strength to carry our burdens, and then we can help others to carry theirs.Carolyn ;o) hay the sun is out again! woo hoo!Lea wrote:>> I forgot to mention that if I did go running screaming into the night, > they would follow me and drag me back kicking and screaming.> > > > >> > > >> > > > I think it's the most normal thing in the world to feel defensive> > > and insecure> > > > when people are talking about what is wrong with your kid. I> > > remember feeling> > > > like there was an unspoken subtext that went something like "if > only> > > Reggi was a> > > > better mother, this boy would be less aggressive, better able to> > > adapt to the> > > > school, more responsive to authority, blah blah blah". When my son> > > was in> > > > pre-school his behavior really shocked the preschool teachers. I> > > remember some> > > > really confrontational and hostile conversations. They absolutely> > > blamed me.> > > > And they were absolutely wrong. And not very smart or resourceful.> > > >> > > > I have to admit that I've said some things that I really regret > when> > > I was> > > > feeling defensive and angry. And I was unable to really listen when> > > I felt that> > > > way. I apologized and I've tried to learn. Now, when I feel myself> > > starting to> > > > tense up and feel defensive, I remind myself that the teachers> > > probably feel the> > > > same way, like they are being blamed in some way. And I remember my> > > job- to be> > > > my child's advocate, to pull a group of people together who will> > > give him the> > > > tools and support he needs. Doesn't matter what they think of me.> > > >> > > > Do I remember correctly that autism and working with the school is> > > relatively> > > > new for you? Give yourself a break- be gentle with yourself. Eat a> > > lot of> > > > chocolate. And don't isolate yourself. Talk to friends, find a > local> > > support> > > > group. They will be able to help you in so many ways. This is really> > > > important! If you are depressed, take these feelings seriously > and get> > > > treatment. Talk to your doctor about what you are going through.> > > This is not> > > > the time to practice martyrdom. Your child needs you to be strong,> > > and this bad> > > > time won't last forever.> > > >> > > >> > > > Reggi Levin> > > > reggi@> > > >> > >> > >> >> >> > ------------------------------------> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2011 Report Share Posted April 7, 2011 Re: Re: frustrated Thank you Carolyn. My faith in our Lord keeps me going each and everyday. This world is hard enough without all the extra hardships but I know He doesn't put anything on us that we can't bare. I guess we all must be pretty strong for us to deal with some of the things we have to deal with. I do count my precious granddaughter as a major blessing in my life and everyday she teaches me something new. Just the other day there was a severe storm moving in and we walked out on the porch to see what the skies looked like. She started spinning around with her arms outstretched and singing " Jesus hugs, Jesus hugs " . That is what she calls the wind. Instead of the weather making us nervous, there were 3 tornadoes that touched down nearby, we cuddled up together Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2011 Report Share Posted April 7, 2011 I love this. "Jesus hugs." May we all feel them. Sherri 15:5 I am the vine; you are the branches. If a man remains in me, and I in him, he will bear much fruit; apart from me you can do nothing. From: Lea Hutto <leamadea@...>Autism and Aspergers Treatment Sent: Wed, April 6, 2011 11:22:51 PMSubject: Re: Re: frustrated Thank you Carolyn. My faith in our Lord keeps me going each and everyday. This world is hard enough without all the extra hardships but I know He doesn't put anything on us that we can't bare. I guess we all must be pretty strong for us to deal with some of the things we have to deal with. I do count my precious granddaughter as a major blessing in my life and everyday she teaches me something new. Just the other day there was a severe storm moving in and we walked out on the porch to see what the skies looked like. She started spinning around with her arms outstretched and singing "Jesus hugs, Jesus hugs". That is what she calls the wind. Instead of the weather making us nervous, there were 3 tornadoes that touched down nearby, we cuddled up together and listened to the rain because Jesus was there.It was really nice. True there are rough days but your letter brought out the truth to it. Thank you, Lea From: Carolyn <charper777@...>Autism and Aspergers Treatment Sent: Tue, April 5, 2011 12:19:37 PMSubject: Re: Re: frustratedHi Lea, I do understand the feeling of wanting to go running screaming into the night! I have felt that way a lot over the years, but not so much anymore thank God. Life is just hard and especially when we have been given others with more demanding than normal needs to somehow try to meet. I know it is hard but have learned that God's grace is sufficient, if we turn to Him He will give us His power to do what we must do. That is what grace is it is Power... Sometimes it doesn't feel like He is doing it, but He is, but too many forget to ask, I ask all the time, "Gooooood!! Help me!!" Really that is exactly what I pray.The Bible says we receive not because we ask not and when we ask we ask amiss. Most of us ask for the trial to GO AWAY like I always did, took time to learn it was not going away so I needed God's power to handle it..and eventually some of it did go away...So so far I have raised my four kids and still taking care of my 46 year old disabled kid at home, and the grandkids when they come. Used to take care of the three kids while my daughter worked full time as a mail carrier, she left early and got home late, and boy was I ever glad when I saw her car drive up! She finally had to retire due to fibromyalgia a few years ago and it was a blessing as I was about to drop in my tracks. Sad she had to quit work but was time she became a full time mom to three growing kids too! And she did get on disability praise God and retained her health insurance which has been important for her medical needs and her family's, such as her husband got a new hip last year all paid for. And I took her yesterday to the hospital and she got a shot of cortisone in her back and she was better today she said when we went to work out at the gym. She wants one in the other side now.So I say we must ask God to give us strength to carry our burdens, and then we can help others to carry theirs.Carolyn ;o) hay the sun is out again! woo hoo!Lea wrote:>> I forgot to mention that if I did go running screaming into the night, > they would follow me and drag me back kicking and screaming.> > > > >> > > >> > > > I think it's the most normal thing in the world to feel defensive> > > and insecure> > > > when people are talking about what is wrong with your kid. I> > > remember feeling> > > > like there was an unspoken subtext that went something like "if > only> > > Reggi was a> > > > better mother, this boy would be less aggressive, better able to> > > adapt to the> > > > school, more responsive to authority, blah blah blah". When my son> > > was in> > > > pre-school his behavior really shocked the preschool teachers. I> > > remember some> > > > really confrontational and hostile conversations. They absolutely> > > blamed me.> > > > And they were absolutely wrong. And not very smart or resourceful.> > > >> > > > I have to admit that I've said some things that I really regret > when> > > I was> > > > feeling defensive and angry. And I was unable to really listen when> > > I felt that> > > > way. I apologized and I've tried to learn. Now, when I feel myself> > > starting to> > > > tense up and feel defensive, I remind myself that the teachers> > > probably feel the> > > > same way, like they are being blamed in some way. And I remember my> > > job- to be> > > > my child's advocate, to pull a group of people together who will> > > give him the> > > > tools and support he needs. Doesn't matter what they think of me.> > > >> > > > Do I remember correctly that autism and working with the school is> > > relatively> > > > new for you? Give yourself a break- be gentle with yourself. Eat a> > > lot of> > > > chocolate. And don't isolate yourself. Talk to friends, find a > local> > > support> > > > group. They will be able to help you in so many ways. This is really> > > > important! If you are depressed, take these feelings seriously > and get> > > > treatment. Talk to your doctor about what you are going through.> > > This is not> > > > the time to practice martyrdom. Your child needs you to be strong,> > > and this bad> > > > time won't last forever.> > > >> > > >> > > > Reggi Levin> > > > reggi@> > > >> > >> > >> >> >> > ------------------------------------> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2011 Report Share Posted May 4, 2011 It's very hard to see our kids in pain and suffering. Our kids are brave and stronger than most kids. I know how you feel as my Kaylee has been going through the worst flare she has had in 6 years. She had joint injections and her first remicade infusion yesterday. She was a real trooper, very brave and handled probably better than I did. I hope your daughter gets some relief. Why don't you give her rheumy a call and see what they suggest? No need to let her continue to be in so much pain if something can be done to help. Hope things get better! , Kaylee, ext pauci, Uveitis, ADHD, ODD Frustrated had to keep my daughter Sophie home today from school , her wrist was bothering her , which is her hand she uses to write with. now tonight her ankle which has also bothered her before is hurting her. She is on naprosyn, methotrexate injections, prednisone, daily antibiotic , daily dose of tylenol, previcid. Its frustrating to see her still in pain, still suffering. Thanks for listening, ..mom to Sophie 6 yrs...jia, iga deficiency, autism. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2011 Report Share Posted May 4, 2011 Thanks , Since being diagnosed 2 yrs ago her arthritis has never been well under control. Its frustrating to give all these meds with little relief. Our rhumatologist said our next step at our next appointment was to decide if Enbrel was next. I am scared to give it to her but iam also tired of seeing her in pain and missing school and not being able to do the things she loves to do. I am at the point where I would try just about anything.She had the cortisone injections done twice with no relief. Its been a long , hard road . looking for a light at the end of this dark tunnel is exhausting. ...mom to Sophie, 6 yrs old , jia, iga deficiency, autism. > > > It's very hard to see our kids in pain and suffering. Our kids are brave and stronger than most kids. > I know how you feel as my Kaylee has been going through the worst flare she has had in 6 years. > She had joint injections and her first remicade infusion yesterday. She was a real trooper, very brave > and handled probably better than I did. I hope your daughter gets some relief. Why don't you give > her rheumy a call and see what they suggest? No need to let her continue to be in so much pain > if something can be done to help. > Hope things get better! > > , Kaylee, ext pauci, Uveitis, ADHD, ODD > > > > > > > Frustrated > > > > > had to keep my daughter Sophie home today from school , her wrist was bothering her , which is her hand she uses to write with. now tonight her ankle which has also bothered her before is hurting her. She is on naprosyn, methotrexate injections, prednisone, daily antibiotic , daily dose of tylenol, previcid. Its frustrating to see her still in pain, still suffering. > > > Thanks for listening, > > ..mom to Sophie 6 yrs...jia, iga deficiency, autism. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2011 Report Share Posted May 4, 2011 I'm so sorry, I have a 6 year old too and can't imagine how hard it is watching her.  I feel lucky because Avery was older when he got sick.  hugs  I see from your status she has and iga deficiency, is she sick a lot too? ________________________________ From: watt_melanie <melaniescott79@...> Sent: Wednesday, May 4, 2011 7:54 PM Subject: Frustrated  had to keep my daughter Sophie home today from school , her wrist was bothering her , which is her hand she uses to write with. now tonight her ankle which has also bothered her before is hurting her. She is on naprosyn, methotrexate injections, prednisone, daily antibiotic , daily dose of tylenol, previcid. Its frustrating to see her still in pain, still suffering. Thanks for listening, ..mom to Sophie 6 yrs...jia, iga deficiency, autism. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 Thanks Amy, It has been very hard, she was 4 when she was diagnosed but I am sure she has had arthritis since she was 1 or so , she did not talk til she was almost 3 because of her autism or I assumed it was that but she has come so far with her autism she is as close to a normal child as you can get. Sometimes I even wonder if she had autism but had arthritis pain and was just unable to tell us . Yes she is sick ALOT!! She has a throat infection right now that even with 28 days of antibiotics did not cure, she is one a daily dose of antibiotics until june when we go back to her immunologist. We are doing a walk to fight arthritis in less then two weeks in our area and i am worried she will not be able to participate. now that she is older and does not fit in a stroller or a wagon its going to be hard. thanks for listening, ( mom to Sophie, 6 years old, jia, iga deficiency, autism.) > > I'm so sorry, I have a 6 year old too and can't imagine how hard it is watching her.  I feel lucky because Avery was older when he got sick.  hugs  I see from your status she has and iga deficiency, is she sick a lot too? > > > ________________________________ > From: watt_melanie <melaniescott79@...> > > Sent: Wednesday, May 4, 2011 7:54 PM > Subject: Frustrated > > >  > had to keep my daughter Sophie home today from school , her wrist was bothering her , which is her hand she uses to write with. now tonight her ankle which has also bothered her before is hurting her. She is on naprosyn, methotrexate injections, prednisone, daily antibiotic , daily dose of tylenol, previcid. Its frustrating to see her still in pain, still suffering. > > > Thanks for listening, > > ..mom to Sophie 6 yrs...jia, iga deficiency, autism. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 , You may need to get a small wheelchair for Sophie. You could have it when she is having a bad day. There are many that are light and easier to manage. Your insurance should cover it. I was looking at Sophie's meds. Have they mentioned starting a Biologic (Enbrel or Humira)? It seems she may be needing one. Audra 14 poly 07 Peyton 13 poly 08 > > Thanks Amy, > > It has been very hard, she was 4 when she was diagnosed but I am sure she has had arthritis since she was 1 or so , she did not talk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 Audra, Ya it maybe the thing to do eh ? Yes at our last visit her rhummy was debating on starting Enbrel , she wanted to give the methotrexate injections some time to see if it helped. Obviously it is not helping enough. She said that when we come back in June if things were not improving it would be out next step, the funding and all the tests needing to be done before we start has been done and so we are just in a wait and see game. > > > > Thanks Amy, > > > > It has been very hard, she was 4 when she was diagnosed but I am sure she has had arthritis since she was 1 or so , she did not talk > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2011 Report Share Posted May 6, 2011 , I'm so sorry to hear that Sophie is still in so much pain. I wish I had more insight to offer other than thoughts and prayers... {{{hugs}}} Sharon (, 18 months old, systemic) > > had to keep my daughter Sophie home today from school , her wrist was bothering her , which is her hand she uses to write with. now tonight her ankle which has also bothered her before is hurting her. She is on naprosyn, methotrexate injections, prednisone, daily antibiotic , daily dose of tylenol, previcid. Its frustrating to see her still in pain, still suffering. > > > Thanks for listening, > > ..mom to Sophie 6 yrs...jia, iga deficiency, autism. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2011 Report Share Posted May 23, 2011 I am trying to get my and my son's diet to follow Bee's plan. My husband is getting very annoyed with me because he thinks I am out of line with the diet changes. I have been trying to take it slow and figure out how to get my very picky son to eat the new diet. It is so frustrating when I have to fight for every change in diet with my hubby. Do any of you have any recommendations? I have had my hubby read the info and he still isn't being very helpful. Thanks again, Margaret Quote Link to comment Share on other sites More sharing options...
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