Guest guest Posted February 2, 2008 Report Share Posted February 2, 2008 Went to a friend's party tonight with the whole family. 's usually a sweetheart with just a few behavior issues. But it was dreadful. He tried to swat away people's drinks and food, he hit a 2-year-old, and hit a 5-year-old's drink. He hit me. He cried. Sometimes I get the dreadful sense that he's slipping away, and this was one of those times. Just could not reach him. I felt embarrassed but mostly I felt so sad for him. He was tired and just could not cope with the social situation. It's no biggie, I know; nothing most of you haven't been through, probably many times. But it sucked and I just wanted to share with somebody who would have a clue what it's like. Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 We all know how you feel Beth, its overwhelming for most of us once in awhile, my heart goes out to ya. Hang in there, I cant remember all Mics labels and dont try unless its necessary. Laurie To: From: bdehoff@... Date: Fri, 27 Mar 2009 22:46:38 -0400 Subject: sigh I've been seeing your posts and just a little overwhelmed and not replying much but thinking of you all. has a sleep study this coming Tues. night. Can't imagine how it will go. Sleep is still very erratic. He also has been sick so much this winter, and he has low IgM and IgG Subclass 4, and picked up another label today of primary immune deficiency. I'm just really tired. I just saw a sunny little thing from someone with a baby with DS about how wonderful it all is. And yes, I wouldn't trade my son for anything at all, but it's not all sunshine and flowers. I have lost track of all his developmental and medical labels, and maybe that's not so bad. He's just . And I am hopelessly in love and just way beyond tired. Just wanted to vent to those who get it a bit. I understand cheery moms of babies with DS - I used to be one. But sometimes now they make me a bit ill. Beth, mom to , 9, DS/autism/leukemia survivor/failure to thrive/medically fragile/primary immune deficiency Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 So with you! Remember how glad I was to stop reading the DS listserve when I found this one. We just never fit there. > I've been seeing your posts and just a little overwhelmed and not > replying much but thinking of you all. has a sleep study this coming > Tues. night. Can't imagine how it will go. Sleep is still very erratic. He > also has been sick so much this winter, and he has low IgM and IgG Subclass > 4, and picked up another label today of primary immune deficiency. I'm just > really tired. I just saw a sunny little thing from someone with a baby with > DS about how wonderful it all is. And yes, I wouldn't trade my son for > anything at all, but it's not all sunshine and flowers. I have lost track of > all his developmental and medical labels, and maybe that's not so bad. He's > just . And I am hopelessly in love and just way beyond tired. > > Just wanted to vent to those who get it a bit. I understand cheery moms of > babies with DS - I used to be one. But sometimes now they make me a bit ill. > > Beth, mom to , 9, DS/autism/leukemia survivor/failure to > thrive/medically fragile/primary immune deficiency > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 Hi Beth, Your words are so well said- I totally agree with you about the cheery moms of babies with DS. and I were at a birthday party this afternoon with friends from his early intervention/preschool program... is the only child with DS-PDD, the others have DS only. While the other children were interested in playing and doing crafts, paying attention and eating pizza, my little guy had no interest in being there and kept trying to go to the exit. I asked myself today whether we should continue to go to these parties.... should we keep trying to expose so that he can learn how to play/have fun? I'm just not sure.... It was lonely ,also, from an adult perspective. The other parents were able to talk amongst themselves as their kids were able to play together, but I needed to supervise my son every second, otherwise he would have eaten crayons, napkins, etc. or just taken off. I know that I'm preaching to the choir here, so thanks for listening. And thank you for your candor. Lack of sleep and the continual medical challenges that our children deal with certainly doesn't help our stamina and courage. Special prayers for you and as you deal with yet another challenge- may experience physical renewal/healing and may you be blessed with restorative sleep/energy and renewed hope. Hugs, Mom to , 5 yrs. old DS/PDD-NOS To: From: lauriedrago@... Date: Sat, 28 Mar 2009 07:04:47 -0400 Subject: RE: sigh We all know how you feel Beth, its overwhelming for most of us once in awhile, my heart goes out to ya. Hang in there, I cant remember all Mics labels and dont try unless its necessary. Laurie To: From: bdehoff@... Date: Fri, 27 Mar 2009 22:46:38 -0400 Subject: sigh I've been seeing your posts and just a little overwhelmed and not replying much but thinking of you all. has a sleep study this coming Tues. night. Can't imagine how it will go. Sleep is still very erratic. He also has been sick so much this winter, and he has low IgM and IgG Subclass 4, and picked up another label today of primary immune deficiency. I'm just really tired. I just saw a sunny little thing from someone with a baby with DS about how wonderful it all is. And yes, I wouldn't trade my son for anything at all, but it's not all sunshine and flowers. I have lost track of all his developmental and medical labels, and maybe that's not so bad. He's just . And I am hopelessly in love and just way beyond tired. Just wanted to vent to those who get it a bit. I understand cheery moms of babies with DS - I used to be one. But sometimes now they make me a bit ill. Beth, mom to , 9, DS/autism/leukemia survivor/failure to thrive/medically fragile/primary immune deficiency Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 Me too! I was so upset that we just didn't fit in anywhere with other DS kids until I found you guys!Terry Re: sighTo: > So with you! Remember how glad I was to stop reading the DS > listserve when> I found this one. We just never fit there.> > On Fri, Mar 27, 2009 at 10:46 PM, B DeHoff wrote:> > > I've been seeing your posts and just a little overwhelmed > and not> > replying much but thinking of you all. has a sleep study > this coming> > Tues. night. Can't imagine how it will go. Sleep is still very > erratic. He> > also has been sick so much this winter, and he has low IgM and > IgG Subclass> > 4, and picked up another label today of primary immune > deficiency. I'm just> > really tired. I just saw a sunny little thing from someone > with a baby with> > DS about how wonderful it all is. And yes, I wouldn't trade my > son for> > anything at all, but it's not all sunshine and flowers. I have > lost track of> > all his developmental and medical labels, and maybe that's not > so bad. He's> > just . And I am hopelessly in love and just way beyond tired.> >> > Just wanted to vent to those who get it a bit. I understand > cheery moms of> > babies with DS - I used to be one. But sometimes now they make > me a bit ill.> >> > Beth, mom to , 9, DS/autism/leukemia survivor/failure to> > thrive/medically fragile/primary immune deficiency> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 While I was waiting for my son during a therapy session, I spoke to another mom whose daughter has DS. She was as cute as a button!! Even though her daughter was 5 years old, she was still having a hard time coming to terms with the fact that her daughter had DS!!! I about flipped! I was very nice, but told her how lucky she was to have an adorable daughter with JUST DS! I do love kids with DS, but am honestly not too fond of Austism. Wife to Dan and Mom to Elder Logan (MN Minneapolis Mission 2/11/09), Cameron (18), Madison (13), and Brigham (9) who has Down syndrome and Autism Subject: RE: sigh To: " " < > Date: Saturday, March 28, 2009, 11:18 PM Hi Beth, Your words are so well said- I totally agree with you about the cheery moms of babies with DS. and I were at a birthday party this afternoon with friends from his early intervention/ preschool program... is the only child with DS-PDD, the others have DS only. While the other children were interested in playing and doing crafts, paying attention and eating pizza, my little guy had no interest in being there and kept trying to go to the exit. I asked myself today whether we should continue to go to these parties.... should we keep trying to expose so that he can learn how to play/have fun? I'm just not sure.... It was lonely ,also, from an adult perspective. The other parents were able to talk amongst themselves as their kids were able to play together, but I needed to supervise my son every second, otherwise he would have eaten crayons, napkins, etc. or just taken off. I know that I'm preaching to the choir here, so thanks for listening. And thank you for your candor. Lack of sleep and the continual medical challenges that our children deal with certainly doesn't help our stamina and courage. Special prayers for you and as you deal with yet another challenge- may experience physical renewal/healing and may you be blessed with restorative sleep/energy and renewed hope. Hugs, Mom to , 5 yrs. old DS/PDD-NOS To: @yahoogrou ps.com From: lauriedrago@ hotmail.com Date: Sat, 28 Mar 2009 07:04:47 -0400 Subject: RE: sigh We all know how you feel Beth, its overwhelming for most of us once in awhile, my heart goes out to ya. Hang in there, I cant remember all Mics labels and dont try unless its necessary. Laurie To: @yahoogrou ps.com From: bdehoffiquest (DOT) net Date: Fri, 27 Mar 2009 22:46:38 -0400 Subject: sigh I've been seeing your posts and just a little overwhelmed and not replying much but thinking of you all. has a sleep study this coming Tues. night. Can't imagine how it will go. Sleep is still very erratic. He also has been sick so much this winter, and he has low IgM and IgG Subclass 4, and picked up another label today of primary immune deficiency. I'm just really tired. I just saw a sunny little thing from someone with a baby with DS about how wonderful it all is. And yes, I wouldn't trade my son for anything at all, but it's not all sunshine and flowers. I have lost track of all his developmental and medical labels, and maybe that's not so bad. He's just . And I am hopelessly in love and just way beyond tired. Just wanted to vent to those who get it a bit. I understand cheery moms of babies with DS - I used to be one. But sometimes now they make me a bit ill. Beth, mom to , 9, DS/autism/leukemia survivor/failure to thrive/medically fragile/primary immune deficiency Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 > > Me too! I was so upset that we just didn't fit in anywhere with other DS kids until I found you guys!Terry----- Hi Terry, Glad you have come aboard. Can totally relate and you will read everyone posting their stories and could probably think that this could be about your story but the names, etc. have been changed. So welcome, we all learn together with the challenges given but great to know that we are not alone. Irma,20,DS/ASD Quote Link to comment Share on other sites More sharing options...
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