Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Carla, Where do you live? Hanover Park, IL _____ From: [mailto: ] On Behalf Of Carla Mayer Sent: Tuesday, February 05, 2008 10:36 AM To: Subject: Another new one Hello, My name is Carla and I have 2 daughters, and . They are 11 and 7. has Down Syndrome, sensory problems and what they recently have decided are autistic like behaviors. No formal diagnosis of autism. I have just joined this list and was going to just read for awhile to become familiar with everyone. I just had to post. This may sound strange but after reading some of the posts on behaviors I felt like I could breathe, like a heavy weight had come off my chest. I have never felt like we fit on the other Down Syndrome lists. I was afraid to post as my daughter seemed to have so many more troubles. We are in a rural school district and are always hearing " well this worked with the other Down Syndrome kids " . None of the other families that we know have faced the same things we are dealing with. One time came to my mind as I was reading. would grab things and squeeze so hard you couldn't get them away from her when she was younger. Usually things she shouldn't do that to. At meals I was always on guard. Well she had seemed to have moved past that and I had relaxed some. On vacation we visited some distant family and had supper with them. They had went out of their way to have a nice dinner and had china, glass, etc on the table. I hate dinners like that. As they were passing the stick of butter by to me, she all of sudden reaches out and grabs the butter and just squeezes as hard as she can. Of course I try to get it away from her and there is no way. What a mess! I was horrified. Luckily the family handled it pretty well but I still felt so bad. Just like everyone else we have had numerous events like this since then. I am constantly fighting the battle with myself of wanting her to be included but also wanting her to be comfortable. I am glad to have found this group! Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Welcome to all the newbies. Carla, we have all felt the relief of finding this site. We have a place! Holly Another new one Hello, My name is Carla and I have 2 daughters, and . They are 11 and 7. has Down Syndrome, sensory problems and what they recently have decided are autistic like behaviors. No formal diagnosis of autism. I have just joined this list and was going to just read for awhile to become familiar with everyone. I just had to post. This may sound strange but after reading some of the posts on behaviors I felt like I could breathe, like a heavy weight had come off my chest. I have never felt like we fit on the other Down Syndrome lists. I was afraid to post as my daughter seemed to have so many more troubles. We are in a rural school district and are always hearing " well this worked with the other Down Syndrome kids " . None of the other families that we know have faced the same things we are dealing with. One time came to my mind as I was reading. would grab things and squeeze so hard you couldn't get them away from her when she was younger. Usually things she shouldn't do that to. At meals I was always on guard. Well she had seemed to have moved past that and I had relaxed some. On vacation we visited some distant family and had supper with them. They had went out of their way to have a nice dinner and had china, glass, etc on the table. I hate dinners like that. As they were passing the stick of butter by to me, she all of sudden reaches out and grabs the butter and just squeezes as hard as she can. Of course I try to get it away from her and there is no way. What a mess! I was horrified. Luckily the family handled it pretty well but I still felt so bad. Just like everyone else we have had numerous events like this since then. I am constantly fighting the battle with myself of wanting her to be included but also wanting her to be comfortable. I am glad to have found this group! Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 , I live in the Northeast corner of Missouri. No real big cities nearby. We are about 4 hours North of St. Louis and 3 1/2 hours Northeast of Kansas City. Carla Carla, > > > > Where do you live? > > > > > > Hanover Park, IL > > > > _____ > > From: [mailto: ] On > Behalf > Of Carla Mayer > Sent: Tuesday, February 05, 2008 10:36 AM > To: > Subject: Another new one > > > > Hello, > My name is Carla and I have 2 daughters, and . They are 11 > and 7. has Down Syndrome, sensory problems and what they recently > have decided are autistic like behaviors. No formal diagnosis of autism. > I have just joined this list and was going to just read for awhile to > become familiar with everyone. > > I just had to post. This may sound strange but after reading some of the > posts on behaviors I felt like I could breathe, like a heavy weight had > come off my chest. I have never felt like we fit on the other Down > Syndrome lists. I was afraid to post as my daughter seemed to have so > many more troubles. We are in a rural school district and are always > hearing " well this worked with the other Down Syndrome kids " . None of the > other families that we know have faced the same things we are dealing > with. > > One time came to my mind as I was reading. would grab things and > squeeze so hard you couldn't get them away from her when she was younger. > Usually things she shouldn't do that to. At meals I was always on guard. > Well she had seemed to have moved past that and I had relaxed some. On > vacation we visited some distant family and had supper with them. They > had went out of their way to have a nice dinner and had china, glass, etc > on the table. I hate dinners like that. As they were passing the stick > of butter by to me, she all of sudden reaches out and grabs the > butter and just squeezes as hard as she can. Of course I try to get it > away from her and there is no way. What a mess! I was horrified. Luckily > the family handled it pretty well but I still felt so bad. Just like > everyone else we have had numerous events like this since then. I am > constantly fighting the battle with myself of wanting her to be included > but also wanting her to be comfortable. > > I am glad to have found this group! > Carla > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Oh Yeah - and until you know about the Autism thing, and get everyone else to accept it, everyone acts like you're the worst parent in the world and your childs behavior is a direct result of you 'babying' them and treating them differently and not having expectations of them. The people who are in our lives now are a direct result of their acceptance and relationship with our son, and most of them are not relatives, and actually, there are not many, but they are quality people. I have always tried to remember, that because of Ben, I have met some of the best, and the WORST people on this planet. Quality over Quantity... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Hi, Carla. Glad you feel at home here. My son is 8, DS, leukemia survivor, diagnosed with autism in July 07. So we're pretty new to it all, too. It's a nice place to be when you weary of the DS superstar stories. Beth Another new one Hello, My name is Carla and I have 2 daughters, and . They are 11 and 7. has Down Syndrome, sensory problems and what they recently have decided are autistic like behaviors. No formal diagnosis of autism. I have just joined this list and was going to just read for awhile to become familiar with everyone. I just had to post. This may sound strange but after reading some of the posts on behaviors I felt like I could breathe, like a heavy weight had come off my chest. I have never felt like we fit on the other Down Syndrome lists. I was afraid to post as my daughter seemed to have so many more troubles. We are in a rural school district and are always hearing " well this worked with the other Down Syndrome kids " . None of the other families that we know have faced the same things we are dealing with. One time came to my mind as I was reading. would grab things and squeeze so hard you couldn't get them away from her when she was younger. Usually things she shouldn't do that to. At meals I was always on guard. Well she had seemed to have moved past that and I had relaxed some. On vacation we visited some distant family and had supper with them. They had went out of their way to have a nice dinner and had china, glass, etc on the table. I hate dinners like that. As they were passing the stick of butter by to me, she all of sudden reaches out and grabs the butter and just squeezes as hard as she can. Of course I try to get it away from her and there is no way. What a mess! I was horrified. Luckily the family handled it pretty well but I still felt so bad. Just like everyone else we have had numerous events like this since then. I am constantly fighting the battle with myself of wanting her to be included but also wanting her to be comfortable. I am glad to have found this group! Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Yes, you worded that perfectly. I have felt so lost in that world. > Hi, Carla. Glad you feel at home here. My son is 8, DS, leukemia > survivor, diagnosed with autism in July 07. So we're pretty new to it all, > too. It's a nice place to be when you weary of the DS superstar stories. > > Beth > > > Another new one > > > Hello, > My name is Carla and I have 2 daughters, and . They are 11 > and 7. has Down Syndrome, sensory problems and what they recently > have decided are autistic like behaviors. No formal diagnosis of autism. > I have just joined this list and was going to just read for awhile to > become familiar with everyone. > > I just had to post. This may sound strange but after reading some of the > posts on behaviors I felt like I could breathe, like a heavy weight had > come off my chest. I have never felt like we fit on the other Down > Syndrome lists. I was afraid to post as my daughter seemed to have so > many more troubles. We are in a rural school district and are always > hearing " well this worked with the other Down Syndrome kids " . None of > the > other families that we know have faced the same things we are dealing > with. > > One time came to my mind as I was reading. would grab things and > squeeze so hard you couldn't get them away from her when she was > younger. > Usually things she shouldn't do that to. At meals I was always on guard. > Well she had seemed to have moved past that and I had relaxed some. On > vacation we visited some distant family and had supper with them. They > had went out of their way to have a nice dinner and had china, glass, > etc > on the table. I hate dinners like that. As they were passing the stick > of butter by to me, she all of sudden reaches out and grabs the > butter and just squeezes as hard as she can. Of course I try to get it > away from her and there is no way. What a mess! I was horrified. Luckily > the family handled it pretty well but I still felt so bad. Just like > everyone else we have had numerous events like this since then. I am > constantly fighting the battle with myself of wanting her to be included > but also wanting her to be comfortable. > > I am glad to have found this group! > Carla > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Welcome Carla! I am somewhat newer to the group but wanted to say I began to get choked up as I read your post about having a weight lifted and never fitting in with other lists. I doesn't sound strange to anyone here. I remember pretty much steering clear of any DS groups for a few years since I always came away feeling worse. My child seemed so far behind everyone else and I was not getting the " warm fuzzies " from him all the time that so many other parents were writing about. (It might of had something to do with all the biting, hitting, crying, and head butting that was going on at the time.) I was also getting the " bad mom " vibe from his school since my son had DS with tons of therapy and not progressing like all the others. My funniest memory (funny now, not then) was sitting in a doctors waiting room with my then two yr. old trying to keep him entertained. One of the very nice receptionists smiled at us and said, " I bet he's happy all the time. " As though, " at least you have that " . I remember thinking, " Yeah, that's right. My life is just one big picnic! " But I'm sure I just kept smiling saying something about him having his moments. This group is not only a wonderful resource but also a great place to take a breath and feel normal. I'm glad you found this list! Jen > > Hello, > My name is Carla and I have 2 daughters, and . They are 11 > and 7. has Down Syndrome, sensory problems and what they recently > have decided are autistic like behaviors. No formal diagnosis of autism. > I have just joined this list and was going to just read for awhile to > become familiar with everyone. > > I just had to post. This may sound strange but after reading some of the > posts on behaviors I felt like I could breathe, like a heavy weight had > come off my chest. I have never felt like we fit on the other Down > Syndrome lists. I was afraid to post as my daughter seemed to have so > many more troubles. We are in a rural school district and are always > hearing " well this worked with the other Down Syndrome kids " . None of the > other families that we know have faced the same things we are dealing > with. > > One time came to my mind as I was reading. would grab things and > squeeze so hard you couldn't get them away from her when she was younger. > Usually things she shouldn't do that to. At meals I was always on guard. > Well she had seemed to have moved past that and I had relaxed some. On > vacation we visited some distant family and had supper with them. They > had went out of their way to have a nice dinner and had china, glass, etc > on the table. I hate dinners like that. As they were passing the stick > of butter by to me, she all of sudden reaches out and grabs the > butter and just squeezes as hard as she can. Of course I try to get it > away from her and there is no way. What a mess! I was horrified. Luckily > the family handled it pretty well but I still felt so bad. Just like > everyone else we have had numerous events like this since then. I am > constantly fighting the battle with myself of wanting her to be included > but also wanting her to be comfortable. > > I am glad to have found this group! > Carla > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Welcome to all the newbies! Liz Mom to Tori 8 on 2/23!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 Hi Carla, we live in a rural district as well. There's about 600 kids in the whole district PreK - 12. The other little girl in our district with DS is definitely one of those " superstar " kids, sheesh, you'd never even know the kid had DS. But we're lucky that the school district accepts the dual diagnosis (in fact, another 13 year old boy was dually diagnosed son after Kayla, so they are becoming VERY familiar with it, LOL) and has been very good (so far) about providing appropriate services. I'm hoping the curreng special ed director stays there for the next 18 years of Kayla's schooling! The previous one was nowhere near as accomodating. Ecki Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01) http://oppositekids.blogspot.com/ > > Yes, you worded that perfectly. I have felt so lost in that world. > > > > > > Hi, Carla. Glad you feel at home here. My son is 8, DS, leukemia > > survivor, diagnosed with autism in July 07. So we're pretty new to it all, > > too. It's a nice place to be when you weary of the DS superstar stories. > > > > Beth > > Quote Link to comment Share on other sites More sharing options...
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