Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 coyote, baskin robbins here, takes picturse and copies them onto cakes, since we know lbd has better long term memory how about putting their wedding pic on the cake!!!!sharon m a smile a day keeps the meanies away!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Coyote, Glad to hear that your dad is currently at a plateau. Wow, 50 years. That is wonderful! Since I have been hangin' out at the local nh lately, I have seen a male singer with guitar who comes in several times a week and plays old songs for the residents. Actually I had seen this singer at an Alz. Assoc. seminar that had a section on music therapy. The residents really seem to respond when he plays popular old songs. They start singing and clap their hands. You might want to check to see if a singer is at your dad's nh or if there is a singer in the area. Live might be better than pre-recorded. Hope this helps. Take care, Gwen Hi All! Just thought I would post and let you all know that my Dad is still hangin in there. We seem to be at one of those " plateaus " , but I like the plateaus. (Except knowing what comes at the end of a plateau).... Anyway, this coming Saturday marks my parents 50th Anniversary. I am racking my brain for how to make this day special. I know it wont be what my mom had in the original plan ...Alaskan Cruise ...before Dad got sick, but I cant let it go by without doing SOMETHING. I booked the solarium at the NH, put an ad in the paper for an open house, plan to get a huge cake, and swiped all their photo albums so I can ATTEMPT to create a nice Memory CD. If anyone has any cool ideas, good music (meaningful) selections, poems WHATEVER, let me know!!! Hope all's well with everyone. Hugs, Coyote xx Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Congratulations to your parents. My parents celebrated their 70th anniversary in January. Just 3 weeks before my mother passed. We had a friend burn some CD's with music from their era and got a photographer. It was a great day. My mother was " there " with us. I did the flowers for the occasion. It was a wonderful memory to make. M > >Reply-To: LBDcaregivers >To: LBDcaregivers >Subject: Hi All! >Date: Sun, 11 Jul 2004 21:35:26 -0000 >MIME-Version: 1.0 >X-Originating-IP: 142.154.64.100 >X-Sender: coyote81067@... >Received: from n35.grp.scd.yahoo.com ([66.218.66.103]) by >mc3-f11.hotmail.com with Microsoft SMTPSVC(5.0.2195.6824); Sun, 11 Jul 2004 >14:40:59 -0700 >Received: from [66.218.66.159] by n35.grp.scd.yahoo.com with NNFMP; 11 Jul >2004 21:35:57 -0000 >Received: (qmail 92470 invoked from network); 11 Jul 2004 21:35:35 -0000 >Received: from unknown (66.218.66.218) by m19.grp.scd.yahoo.com with QMQP; >11 Jul 2004 21:35:35 -0000 >Received: from unknown (HELO n11.grp.scd.yahoo.com) (66.218.66.66) by >mta3.grp.scd.yahoo.com with SMTP; 11 Jul 2004 21:35:30 -0000 >Received: from [66.218.67.168] by n11.grp.scd.yahoo.com with NNFMP; 11 Jul >2004 21:35:27 -0000 >X-Message-Info: JGTYoYF78jFEOlEax0bU7uq4IucHxgD8 >X-eGroups-Return: >sentto-2141318-31906-1089581755-cat86443=hotmail.com@... >X-Apparently-To: LBDcaregivers >Message-ID: <ccsbqu+sjqfeGroups> >User-Agent: eGroups-EW/0.82 >X-Mailer: Yahoo Groups Message Poster >X-eGroups-Remote-IP: 66.218.66.66 >X-Yahoo-Profile: coyote_myst >Mailing-List: list LBDcaregivers ; contact >LBDcaregivers-owner >Delivered-To: mailing list LBDcaregivers >Precedence: bulk >List-Unsubscribe: <mailto:LBDcaregivers-unsubscribe > >Return-Path: >sentto-2141318-31906-1089581755-cat86443=hotmail.com@... >X-OriginalArrivalTime: 11 Jul 2004 21:40:59.0780 (UTC) >FILETIME=[C1832C40:01C4678F] > >Just thought I would post and let you all know that my Dad is still >hangin in there. We seem to be at one of those " plateaus " , but I >like the plateaus. (Except knowing what comes at the end of a >plateau).... >Anyway, this coming Saturday marks my parents 50th Anniversary. I am >racking my brain for how to make this day special. I know it wont be >what my mom had in the original plan ...Alaskan Cruise ...before >Dad got sick, but I cant let it go by without doing SOMETHING. I >booked the solarium at the NH, put an ad in the paper for an open >house, plan to get a huge cake, and swiped all their photo albums so >I can ATTEMPT to create a nice Memory CD. If anyone has any cool >ideas, good music (meaningful) selections, poems WHATEVER, let me >know!!! >Hope all's well with everyone. >Hugs, Coyote xx > _________________________________________________________________ Get tips for maintaining your PC, notebook accessories and reviews in Technology 101. http://special.msn.com/tech/technology101.armx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 I think ALL children special and typical have good days and bad days. This was just a bad day for your Cali. As her parent, you have the responsibility to treat her as a normal child. As acquaintances and family who don't see her day in and day out, it is typical for them to feel that sorrow for your child. Its not always a bad thing for people to sympathize with your special childs situation. It shows they have the capacity for compassion. Many many people do NOT have this. In addition to these people however, you need to surround yourself with a support group of people who 'get it'. Who are in the same boat as you, or pretty close to it. That way you have a listening ear and can laugh and cry at the joys and pains of raising a special child. It is hard when you attend a very small church. It would be beneficial if you had a church home that had a special needs class. There are quite a few churches that are practicing inclusion and starting special needs Sunday school classes. My church does both. That being said, I would certainly continue to take Cali to church. She is still being blessed in God's house, even if she does not understand or has a bad day. Hang in there. Karmen Hi all! > Hi everyone! I haven't posted anything in a while..been so busy with the kids.. Today was such a bad day for my daughter- age 6-blind and autistic. I took her to church like always, and today I guess she didn't want to be there. She started fussing so I let her sit with my dad, which usually makes her happy. It didn't help. I gave her headphones to listen to her favorite music and that didn't help either. She started screaming and having a huge meltdown in church. Everyone starts staring, some are giving me dirty looks and some look so sad for me and Cali. I take her as quickly as possible to the nursery, but they can all still hear her. I feel like she is interrupting everyone so I decide to leave. I was doing really well keeping myself together, till an aunt came meet me. She started saying that my daughter was " special " and that everyone understands that cali will have these " moments " and they aren't mad, they feel sorry for her. That made me break down crying. I was told be all her therapists not to feel sorry for her, to treat her as a " normal " child. I don't want others to feel sorry for her. Am I wrong for that? I go to a very small church, and cali is the only child they know with disabilities. The same goes with my family- cali is the only child in family with any kind of disability, so most of them baby her and cry in front of her. Should I just let it go? And should I continue to allow her to attend church with the family? I'd hate to break that weekly ritual but I don't wanna make others uncomfortable. I'm sorry for going on about this, but it really upset me and I know I can count on this group for support and advise. Thanks for listening everyone. I feel better just for talking bout it. > Sent from my BlackBerry® smartphone powered by Centennial Wireless. > > ------------------------------------ > > Autism_in_Girls_and_Women-subscribe > ------------------------ > Autism_in_Girls_and_Women-unsubscribe@...! Groups Links > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 I think it's nice that there are enough people with empathy in the church & ignore the ones who give you dirty looks. I think compassion in people is a good thing. If it can grow from compassion to actively doing something productive to help, that would be even better. I think you did right to remove your daughter from inside the church since it was obviously distressing her. I know with my daughter, it was a while before she would not have loud vocalizations & would sit still during service. We did leave for a while & I would try her periodically. Also got her into kids choir b/c she loves to sing & perform, & so she was on the church campus more. Familiarity may have helped. And in general, her overall behavior is better. Repeated exposure & teaching her how to behave helped to mold her behavior, I think. Since your daughter has some times where she's OK in church & given things to occupy her works some of the time, be patient, & there will come a time when she will probably be able to handle being in church. I have also taken my daughter out during the sermon since it's too abstract & beyond her & left after the singing in the beginning. Marie > Hi everyone! I haven't posted anything in a while..been so busy with the > kids.. Today was such a bad day for my daughter- age 6-blind and autistic. > I took her to church like always, and today I guess she didn't want to be > there. She started fussing so I let her sit with my dad, which usually makes > her happy. It didn't help. I gave her headphones to listen to her favorite > music and that didn't help either. She started screaming and having a huge > meltdown in church. Everyone starts staring, some are giving me dirty looks > and some look so sad for me and Cali. I take her as quickly as possible to > the nursery, but they can all still hear her. I feel like she is > interrupting everyone so I decide to leave. I was doing really well keeping > myself together, till an aunt came meet me. She started saying that my > daughter was " special " and that everyone understands that cali will have > these " moments " and they aren't mad, they feel sorry for her. That made me > break down crying. I was told be all her therapists not to feel sorry for > her, to treat her as a " normal " child. I don't want others to feel sorry for > her. Am I wrong for that? I go to a very small church, and cali is the only > child they know with disabilities. The same goes with my family- cali is the > only child in family with any kind of disability, so most of them baby her > and cry in front of her. Should I just let it go? And should I continue to > allow her to attend church with the family? I'd hate to break that weekly > ritual but I don't wanna make others uncomfortable. I'm sorry for going on > about this, but it really upset me and I know I can count on this group for > support and advise. Thanks for listening everyone. I feel better just for > talking bout it. > Sent from my BlackBerry® smartphone powered by Centennial Wireless. > > ------------------------------------ > > Autism_in_Girls_and_Women-subscribe > ------------------------ > Autism_in_Girls_and_Women-unsubscribe@...! Groups Links > > > > -- Marie A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 Thanks Karmen. I will definitely still bring her to church. Our church is in the process of trying to rebuild and get new members. They are asking for ideas to make it better and I think it would be great if they could have a special needs class. I'm sure when the church does grow there will be other children that could benefit, so I will bring up the suggestion in our next church meeting. Thanks so much. And I do understand that others feel sorrow for her. I think it bothers me mainly because I try to stay so strong and try to act like it never bothers me and when they talk about how sorry they feel for her it breaks down my hard shell and makes me breakdown! I think its time for me to cry when I need to and not feel weak from it Sent from my BlackBerry® smartphone powered by Centennial Wireless. Re: Hi all! I think ALL children special and typical have good days and bad days. This was just a bad day for your Cali. As her parent, you have the responsibility to treat her as a normal child. As acquaintances and family who don't see her day in and day out, it is typical for them to feel that sorrow for your child. Its not always a bad thing for people to sympathize with your special childs situation. It shows they have the capacity for compassion. Many many people do NOT have this. In addition to these people however, you need to surround yourself with a support group of people who 'get it'. Who are in the same boat as you, or pretty close to it. That way you have a listening ear and can laugh and cry at the joys and pains of raising a special child. It is hard when you attend a very small church. It would be beneficial if you had a church home that had a special needs class. There are quite a few churches that are practicing inclusion and starting special needs Sunday school classes. My church does both. That being said, I would certainly continue to take Cali to church. She is still being blessed in God's house, even if she does not understand or has a bad day. Hang in there. Karmen Hi all! > Hi everyone! I haven't posted anything in a while..been so busy with the kids.. Today was such a bad day for my daughter- age 6-blind and autistic. I took her to church like always, and today I guess she didn't want to be there. She started fussing so I let her sit with my dad, which usually makes her happy. It didn't help. I gave her headphones to listen to her favorite music and that didn't help either. She started screaming and having a huge meltdown in church. Everyone starts staring, some are giving me dirty looks and some look so sad for me and Cali. I take her as quickly as possible to the nursery, but they can all still hear her. I feel like she is interrupting everyone so I decide to leave. I was doing really well keeping myself together, till an aunt came meet me. She started saying that my daughter was " special " and that everyone understands that cali will have these " moments " and they aren't mad, they feel sorry for her. That made me break down crying. I was told be all her therapists not to feel sorry for her, to treat her as a " normal " child. I don't want others to feel sorry for her. Am I wrong for that? I go to a very small church, and cali is the only child they know with disabilities. The same goes with my family- cali is the only child in family with any kind of disability, so most of them baby her and cry in front of her. Should I just let it go? And should I continue to allow her to attend church with the family? I'd hate to break that weekly ritual but I don't wanna make others uncomfortable. I'm sorry for going on about this, but it really upset me and I know I can count on this group for support and advise. Thanks for listening everyone. I feel better just for talking bout it. > Sent from my BlackBerry® smartphone powered by Centennial Wireless. > > ------------------------------------ > > Autism_in_Girls_and_Women-subscribe > ------------------------ > Autism_in_Girls_and_Women-unsubscribe@...! Groups Links > > > > ------------------------------------ Autism_in_Girls_and_Women-subscribe ------------------------ Autism_in_Girls_and_Women-unsubscribe@...! Groups Links Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 thanks for responding.it helps so much to realize there are others that have dealt with similar situations. I'm gonna continue to bring her to church. I'd feel horrible not to include her with the family and church has always been so important to my family. Cali also loves music, but our church is very old fashioned and the music isn't quite her style. And there isn't any kind of choir for kids. There is only about 5 kids and they are all under 3! Our church is in the process of trying to change and grow. I'm hoping the changes will liven up services and bring in more children!! If not, I'm worried I will have to bring her to a bigger church with more activities for her. It would hurt so bad since I've been attending this church since the day I was born and my grandfather was rthe minister for over 35 years. But I have to put her needs first I guess Sent from my BlackBerry® smartphone powered by Centennial Wireless. Re: Hi all! I think it's nice that there are enough people with empathy in the church & ignore the ones who give you dirty looks. I think compassion in people is a good thing. If it can grow from compassion to actively doing something productive to help, that would be even better. I think you did right to remove your daughter from inside the church since it was obviously distressing her. I know with my daughter, it was a while before she would not have loud vocalizations & would sit still during service. We did leave for a while & I would try her periodically. Also got her into kids choir b/c she loves to sing & perform, & so she was on the church campus more. Familiarity may have helped. And in general, her overall behavior is better. Repeated exposure & teaching her how to behave helped to mold her behavior, I think. Since your daughter has some times where she's OK in church & given things to occupy her works some of the time, be patient, & there will come a time when she will probably be able to handle being in church. I have also taken my daughter out during the sermon since it's too abstract & beyond her & left after the singing in the beginning. Marie > Hi everyone! I haven't posted anything in a while..been so busy with the > kids.. Today was such a bad day for my daughter- age 6-blind and autistic. > I took her to church like always, and today I guess she didn't want to be > there. She started fussing so I let her sit with my dad, which usually makes > her happy. It didn't help. I gave her headphones to listen to her favorite > music and that didn't help either. She started screaming and having a huge > meltdown in church. Everyone starts staring, some are giving me dirty looks > and some look so sad for me and Cali. I take her as quickly as possible to > the nursery, but they can all still hear her. I feel like she is > interrupting everyone so I decide to leave. I was doing really well keeping > myself together, till an aunt came meet me. She started saying that my > daughter was " special " and that everyone understands that cali will have > these " moments " and they aren't mad, they feel sorry for her. That made me > break down crying. I was told be all her therapists not to feel sorry for > her, to treat her as a " normal " child. I don't want others to feel sorry for > her. Am I wrong for that? I go to a very small church, and cali is the only > child they know with disabilities. The same goes with my family- cali is the > only child in family with any kind of disability, so most of them baby her > and cry in front of her. Should I just let it go? And should I continue to > allow her to attend church with the family? I'd hate to break that weekly > ritual but I don't wanna make others uncomfortable. I'm sorry for going on > about this, but it really upset me and I know I can count on this group for > support and advise. Thanks for listening everyone. I feel better just for > talking bout it. > Sent from my BlackBerry® smartphone powered by Centennial Wireless. > > ------------------------------------ > > Autism_in_Girls_and_Women-subscribe > ------------------------ > Autism_in_Girls_and_Women-unsubscribe@...! Groups Links > > > > -- Marie A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 Glad to have you back with us. I think that therapists mean well to say, " treat her like any other child. We get it. But as parents that is ridiculous if you ask me. Normally we would be able to reason, set up consequences, praise would work wonders, etc I think you need to give yourself a break here. Cali is different and normal doesn't work. We get that here. And having said that, I believe that you require the best from her and set reasonable expectations as we all do. I find church particularly hard . I can almost feel the thoughts of others " thank god that isn't my child, However does that woman manage, what a shame.. " .. And that is just the tip of the iceburg because we don't want to interrupt others experience of worship. There are so many issues to confront in public. It is confusing, uncomfortable and it leaves us feeling vulnerable and uncertain. Your tears are very real. When people speak in kindness, that is when I am likely to want to sob. And I have come to learn that it is more healing to weep in anothers presence than alone. You know, there is a huge part of this story of yours that is very tragic and sad. Often we deny it to ourselves because we must. We focus on the goals, the success, the work, the joys of holding our sweet babies, of dressing them sweetly, of getting a new response however small, but..... there is a part of us that is very very grief stricken. And church can be a place where we take that brokenness. The church can be a place where others are called to share the brokenness in the body of Christ. Cali has a reason to be there. Not because she is broken any more than the rest of us, but because she is a visual reminder of our need for healing and grace. I am sure she brings more to your church than anyone sitting in the pews, Continue to take Cali with you. She is ministering to those in her presence. So are you. So are we all. We all need one another. Others will feel sad. But as she becomes known to them they will learn to see her separate from their own emotions. It will just take time. And quit worrying about her noise. God's Spirit can be heard over the cry of a child! So thus concludes my sermon! LOL Keep on sister! -- Hi all! Hi everyone! I haven't posted anything in a while..been so busy with the kids.. Today was such a bad day for my daughter- age 6-blind and autistic. I took her to church like always, and today I guess she didn't want to be there. She started fussing so I let her sit with my dad, which usually makes her happy. It didn't help. I gave her headphones to listen to her favorite music and that didn't help either. She started screaming and having a huge meltdown in church. Everyone starts staring, some are giving me dirty looks and some look so sad for me and Cali. I take her as quickly as possible to the nursery, but they can all still hear her. I feel like she is interrupting everyone so I decide to leave. I was doing really well keeping myself together, till an aunt came meet me. She started saying that my daughter was " special " and that everyone understands that cali will have these " moments " and they aren't mad, they feel sorry for her. That made me break down crying. I was told be all her therapists not to feel sorry for her, to treat her as a " normal " child. I don't want others to feel sorry for her. Am I wrong for that? I go to a very small church, and cali is the only child they know with disabilities. The same goes with my family- cali is the only child in family with any kind of disability, so most of them baby her and cry in front of her. Should I just let it go? And should I continue to allow her to attend church with the family? I'd hate to break that weekly ritual but I don't wanna make others uncomfortable. I'm sorry for going on about this, but it really upset me and I know I can count on this group for support and advise. Thanks for listening everyone. I feel better just for talking bout it. Sent from my BlackBerry® smartphone powered by Centennial Wireless. ------------------------------------ Autism_in_Girls_and_Women-subscribe ------------------------ Autism_in_Girls_and_Women-unsubscribe@...! Groups Links Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 Your church is very special since you've been going there your whole life & it would be wonderful to continue that tradition. If you have the energy, try & get some older kids to come, possibly ones who can play music & have a contemporary or younder people service? That way, it could have more music/singing & less talking, to keep their interest. It's unfortunate that the other kids are all under 3. Would your church even be interested in trying to get more younger kids into the church, cause you can't do it alone, even if you want to get it started. Marie > thanks for responding.it helps so much to realize there are others that > have dealt with similar situations. I'm gonna continue to bring her to > church. I'd feel horrible not to include her with the family and church has > always been so important to my family. Cali also loves music, but our church > is very old fashioned and the music isn't quite her style. And there isn't > any kind of choir for kids. There is only about 5 kids and they are all > under 3! Our church is in the process of trying to change and grow. I'm > hoping the changes will liven up services and bring in more children!! If > not, I'm worried I will have to bring her to a bigger church with more > activities for her. It would hurt so bad since I've been attending this > church since the day I was born and my grandfather was rthe minister for > over 35 years. But I have to put her needs first I guess > Sent from my BlackBerry® smartphone powered by Centennial Wireless. > > Re: Hi all! > > > I think it's nice that there are enough people with empathy in the church & > ignore the ones who give you dirty looks. I think compassion in people is a > good thing. If it can grow from compassion to actively doing something > productive to help, that would be even better. I think you did right to > remove your daughter from inside the church since it was obviously > distressing her. I know with my daughter, it was a while before she would > not have loud vocalizations & would sit still during service. We did leave > for a while & I would try her periodically. Also got her into kids choir > b/c she loves to sing & perform, & so she was on the church campus more. > Familiarity may have helped. And in general, her overall behavior is > better. Repeated exposure & teaching her how to behave helped to mold her > behavior, I think. Since your daughter has some times where she's OK in > church & given things to occupy her works some of the time, be patient, & > there will come a time when she will probably be able to handle being in > church. I have also taken my daughter out during the sermon since it's too > abstract & beyond her & left after the singing in the beginning. > > Marie > > > > Hi everyone! I haven't posted anything in a while..been so busy with the > > kids.. Today was such a bad day for my daughter- age 6-blind and > autistic. > > I took her to church like always, and today I guess she didn't want to be > > there. She started fussing so I let her sit with my dad, which usually > makes > > her happy. It didn't help. I gave her headphones to listen to her > favorite > > music and that didn't help either. She started screaming and having a > huge > > meltdown in church. Everyone starts staring, some are giving me dirty > looks > > and some look so sad for me and Cali. I take her as quickly as possible > to > > the nursery, but they can all still hear her. I feel like she is > > interrupting everyone so I decide to leave. I was doing really well > keeping > > myself together, till an aunt came meet me. She started saying that my > > daughter was " special " and that everyone understands that cali will have > > these " moments " and they aren't mad, they feel sorry for her. That made > me > > break down crying. I was told be all her therapists not to feel sorry for > > her, to treat her as a " normal " child. I don't want others to feel sorry > for > > her. Am I wrong for that? I go to a very small church, and cali is the > only > > child they know with disabilities. The same goes with my family- cali is > the > > only child in family with any kind of disability, so most of them baby > her > > and cry in front of her. Should I just let it go? And should I continue > to > > allow her to attend church with the family? I'd hate to break that weekly > > ritual but I don't wanna make others uncomfortable. I'm sorry for going > on > > about this, but it really upset me and I know I can count on this group > for > > support and advise. Thanks for listening everyone. I feel better just for > > talking bout it. > > Sent from my BlackBerry® smartphone powered by Centennial Wireless. > > > > ------------------------------------ > > > > Autism_in_Girls_and_Women-subscribe > > ------------------------ > > Autism_in_Girls_and_Women-unsubscribe@...! Groups Links > > > > > > > > > > > -- > Marie A. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 pinkcallieblind. I to understand much so of this I to hate of the pity of me things too and hate of that feeling. I to not want of people to have of pity to me but to just connect with me and allow me a chance to feel normal in the areas of life too such as when venting it is of just that venting, if sad then yes want people to join of me in that sad, or anger or happy ot whatever is of going on. Callie just had of a bad day that is of all but instead of to keep of her home from church each week continue to bring her and such with the knowing that some days she will have of a bad day. as for me the day was of much productive as went through all of my collected autism materials and pitched of much garbage bags of it that was of outdated and such. and put aside that which I to plan to take to a place and let of the parents that go there have of access too. I to rearranged of my office room and cleaned of it much so all of the day. I to spended of much of 12 hours of cleaning. that was of my office, some of my bedroom and some of the laundry. sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 oh, just reading your message i could feel your pain, as i have felt in times past. Please don't stop taking her to church, there will always be people who do not understand and who do not wish to understand, thats human nature. most of them would sort of understand, they just don't know how to act around you or her. my daughter who is 14, hasnt been to church the last 3 weeks with us, first week her older sister was staying, so i suggested she have time at home. second week we were sick, so none of us went, and this last sunday, she had a bad cold, and came to me and asked was it ok if she stayed at home by herself.........yes, i still get a little fearful, but she knows not to answer phone, or door. Your child is a blessing, and has every right to be in church like anyone else. I still try to find things to occupy hannah, there is a sunday school there with younger kids, and i asked the leader if she wanders in was that ok, and they said definitely, as they once had a son with disabilities, who eventually died, so they do understand what its like to a degree. Hannah won't go but.........i think in her own mind, even though she acts 6, she can see she is getting bigger, in a bigger class at school, so thinks it isnt the place for her........so she sits with us. she takes a book to look at, paper and pens. she has been in church all her life as all our kids have, so its a natural thing to her. People think they are being nice sometimes, and they are trying, but they have no idea, and thats usually when the tears start on my part. Like the other day, hannah received an award at school for art.............she hates praise of any kind, so when her name was called the tears came. i dont know how many times i have told teachers please dont give her awards, she cannot handle it....i must have failed in telling this one teacher or she ignored me......i only found out through another mother who has 3 aspergers sons...........when she told me i was upset and angry, as here i am trying to make school as best i can for her, and they ignore my suggestion.........tears sprang up. i just told this mother i was having a bad time and i wish people would listen.......she understood, but how many others would have............just know we are here, and we understand.......... Cheryl S [chez] > To: Autism_in_Girls_and_Women > From: pinkcallieblind@... > Date: Mon, 2 Mar 2009 01:27:54 +0000 > Subject: Hi all! > > Hi everyone! I haven't posted anything in a while..been so busy with the kids.. Today was such a bad day for my daughter- age 6-blind and autistic. I took her to church like always, and today I guess she didn't want to be there. She started fussing so I let her sit with my dad, which usually makes her happy. It didn't help. I gave her headphones to listen to her favorite music and that didn't help either. She started screaming and having a huge meltdown in church. Everyone starts staring, some are giving me dirty looks and some look so sad for me and Cali. I take her as quickly as possible to the nursery, but they can all still hear her. I feel like she is interrupting everyone so I decide to leave. I was doing really well keeping myself together, till an aunt came meet me. She started saying that my daughter was " special " and that everyone understands that cali will have these " moments " and they aren't mad, they feel sorry for her. That made me break down crying. I was told be all her therapists not to feel sorry for her, to treat her as a " normal " child. I don't want others to feel sorry for her. Am I wrong for that? I go to a very small church, and cali is the only child they know with disabilities. The same goes with my family- cali is the only child in family with any kind of disability, so most of them baby her and cry in front of her. Should I just let it go? And should I continue to allow her to attend church with the family? I'd hate to break that weekly ritual but I don't wanna make others uncomfortable. I'm sorry for going on about this, but it really upset me and I know I can count on this group for support and advise. Thanks for listening everyone. I feel better just for talking bout it. > Sent from my BlackBerry® smartphone powered by Centennial Wireless. > > ------------------------------------ > > Autism_in_Girls_and_Women-subscribe > ------------------------ > Autism_in_Girls_and_Women-unsubscribe@...! Groups Links > > > _________________________________________________________________ Looking to change your car this year? Find car news, reviews and more http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Fsecure%2Dau%2Eimrworldwide%2Ecom\ %2Fcgi%2Dbin%2Fa%2Fci%5F450304%2Fet%5F2%2Fcg%5F801459%2Fpi%5F1004813%2Fai%5F8596\ 41 & _t=762955845 & _r=tig_OCT07 & _m=EXT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 I look at it like this. You are her mom, you HAVE to be the one to teach her independence. You HAVE to be the one to not baby her so she will have a quality of life as an adult. But your church brethren, they HAVE to love you both. And it sounds as if they do. Feeling sorry for someone is sort of a catch all phrase. It may also mean they have compassion for you & her. It may mean they also love her very much and think she is wonderful. Trust me, the opposite of feeling sorry for her at other churches may be resenting her. It doesn't sound like you have that there. Run with it!!! I've been frustrated at times that my church family did things well-meaning, such as taking Allie to a little kid class where she was happier, meaning that the little kids would be in potential danger as they didn't understand how to work with her, meaning it set me up for YEARS of not being able to take her to try & undo that & get her back with kids more her age who were more her size. I understand that " feeling sorry " for our kids can cause problems. but if the love is there, they are workable & teachable. I also think with us moms we are going through so many different emotions we don't know what/how to ask for from our church body. Sometimes just knowing we are loved is a lot more than we get from the rest of the world. Them loving her will help her go far in this world. I've seen a lot of kids with disabilities get rejected from their spiritual communities. That is very painful. I also know what not having regular church has done for my spiritual health. It's not been positive. If you can keep going to a church that will welcome you, I would encourage to hang on to it all you can. Being with Godly people can make all the difference in this journey, even if they don't always get it. Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 In a message dated 3/1/2009 8:29:50 P.M. Eastern Standard Time, pinkcallieblind@... writes: The same goes with my family- cali is the only child in family with any kind of disability, so most of them baby her and cry in front of her. Should I just let it go? And should I continue to allow her to attend church with the family? I'd hate to break that weekly ritual but I don't wanna make others uncomfortable. I'm sorry for going on about this, we have a room we sit in the back in where we can listen. abby doesn't like crowds and gets nevous around a lot of people. somedays my daughter can go to our 'church' somedays no. try to find out what is upsetting her if you can...its hard to do often. she may have just had an off day. when abby was 2 she screamed a lot. and we would have to leaver early but going regularly got her used to it. hang in there... eric abbys dad **************Need a job? Find employment help in your area. (http://yellowpages.aol.com/search?query=employment_agencies & ncid=emlcntusyelp00\ 000005) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 I understand the hard shell. Oftentimes we parents try to ALWAYS be strong, not realizing that from time to time it is good for us to get our grief and mourning out. We mourn for all the things our special children will miss out on. But someone who had a sicker child than mine (he passed away 10 yrs. ago) once told me that if your child is happy, then no matter what special needs he/she has, always focus on the fact that you have a happy child. When I start to get upset about my daughter, I try to keep in mind that despite her special needs, she IS a happy and well cared for little girl. Take care, Karmen Hi all! > > > > Hi everyone! I haven't posted anything in a while..been so busy with the > kids.. Today was such a bad day for my daughter- age 6-blind and autistic. > I took her to church like always, and today I guess she didn't want to be > there. She started fussing so I let her sit with my dad, which usually makes > her happy. It didn't help. I gave her headphones to listen to her favorite > music and that didn't help either. She started screaming and having a huge > meltdown in church. Everyone starts staring, some are giving me dirty looks > and some look so sad for me and Cali. I take her as quickly as possible to > the nursery, but they can all still hear her. I feel like she is > interrupting everyone so I decide to leave. I was doing really well keeping > myself together, till an aunt came meet me. She started saying that my > daughter was " special " and that everyone understands that cali will have > these " moments " and they aren't mad, they feel sorry for her. That made me > break down crying. I was told be all her therapists not to feel sorry for > her, to treat her as a " normal " child. I don't want others to feel sorry for > her. Am I wrong for that? I go to a very small church, and cali is the only > child they know with disabilities. The same goes with my family- cali is the > only child in family with any kind of disability, so most of them baby her > and cry in front of her. Should I just let it go? And should I continue to > allow her to attend church with the family? I'd hate to break that weekly > ritual but I don't wanna make others uncomfortable. I'm sorry for going on > about this, but it really upset me and I know I can count on this group for > support and advise. Thanks for listening everyone. I feel better just for > talking bout it. > > Sent from my BlackBerry® smartphone powered by Centennial Wireless. > > > > ------------------------------------ > > > > Autism_in_Girls_and_Women-subscribe > > ------------------------ > > Autism_in_Girls_and_Women-unsubscribe@...! Groups Links > > > > > > > > > > > > > ------------------------------------ > > Autism_in_Girls_and_Women-subscribe > ------------------------ > Autism_in_Girls_and_Women-unsubscribe@...! Groups Links > > > > > > ------------------------------------ > > Autism_in_Girls_and_Women-subscribe > ------------------------ > Autism_in_Girls_and_Women-unsubscribe@...! Groups Links > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Thanks for bringing a smile to my face. We will continue attending church. Every response I've gotten encouraged me to continue to bring her. I feel she has just much right to be there as anyone else does. Our church is in the process of changing and trying to bring in more people. They will never grow if they can't accept people of all different types. Maybe cali can teach them things just by her presence. I'm not trying to make the members look bad, by no means are they bad, they just don't know what to do in these situations. But they will have to learn, Cali isn't going anywhere!! Thanks again! le Sent from my BlackBerry® smartphone powered by Centennial Wireless. Hi all! Hi everyone! I haven't posted anything in a while..been so busy with the kids.. Today was such a bad day for my daughter- age 6-blind and autistic. I took her to church like always, and today I guess she didn't want to be there. She started fussing so I let her sit with my dad, which usually makes her happy. It didn't help. I gave her headphones to listen to her favorite music and that didn't help either. She started screaming and having a huge meltdown in church. Everyone starts staring, some are giving me dirty looks and some look so sad for me and Cali. I take her as quickly as possible to the nursery, but they can all still hear her. I feel like she is interrupting everyone so I decide to leave. I was doing really well keeping myself together, till an aunt came meet me. She started saying that my daughter was " special " and that everyone understands that cali will have these " moments " and they aren't mad, they feel sorry for her. That made me break down crying. I was told be all her therapists not to feel sorry for her, to treat her as a " normal " child. I don't want others to feel sorry for her. Am I wrong for that? I go to a very small church, and cali is the only child they know with disabilities. The same goes with my family- cali is the only child in family with any kind of disability, so most of them baby her and cry in front of her. Should I just let it go? And should I continue to allow her to attend church with the family? I'd hate to break that weekly ritual but I don't wanna make others uncomfortable. I'm sorry for going on about this, but it really upset me and I know I can count on this group for support and advise. Thanks for listening everyone. I feel better just for talking bout it. Sent from my BlackBerry® smartphone powered by Centennial Wireless. ------------------------------------ Autism_in_Girls_and_Women-subscribe ------------------------ Autism_in_Girls_and_Women-unsubscribe@...! Groups Links Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 The church definitely wants to bring in more children. When I was a child we had a huge jr choir and we want it to get that way again. One of the boys that was in my jr choir just recently came back to church after years of being gone, and he has so many great ideas to help build the church back up. His wife is great with kids and wants lots of kids to come. Our church has a huge gym that never gets used and we want to fill it with children. I know it will take time but I'm very hopeful. Sent from my BlackBerry® smartphone powered by Centennial Wireless. Re: Hi all! > > > I think it's nice that there are enough people with empathy in the church & > ignore the ones who give you dirty looks. I think compassion in people is a > good thing. If it can grow from compassion to actively doing something > productive to help, that would be even better. I think you did right to > remove your daughter from inside the church since it was obviously > distressing her. I know with my daughter, it was a while before she would > not have loud vocalizations & would sit still during service. We did leave > for a while & I would try her periodically. Also got her into kids choir > b/c she loves to sing & perform, & so she was on the church campus more. > Familiarity may have helped. And in general, her overall behavior is > better. Repeated exposure & teaching her how to behave helped to mold her > behavior, I think. Since your daughter has some times where she's OK in > church & given things to occupy her works some of the time, be patient, & > there will come a time when she will probably be able to handle being in > church. I have also taken my daughter out during the sermon since it's too > abstract & beyond her & left after the singing in the beginning. > > Marie > > > > Hi everyone! I haven't posted anything in a while..been so busy with the > > kids.. Today was such a bad day for my daughter- age 6-blind and > autistic. > > I took her to church like always, and today I guess she didn't want to be > > there. She started fussing so I let her sit with my dad, which usually > makes > > her happy. It didn't help. I gave her headphones to listen to her > favorite > > music and that didn't help either. She started screaming and having a > huge > > meltdown in church. Everyone starts staring, some are giving me dirty > looks > > and some look so sad for me and Cali. I take her as quickly as possible > to > > the nursery, but they can all still hear her. I feel like she is > > interrupting everyone so I decide to leave. I was doing really well > keeping > > myself together, till an aunt came meet me. She started saying that my > > daughter was " special " and that everyone understands that cali will have > > these " moments " and they aren't mad, they feel sorry for her. That made > me > > break down crying. I was told be all her therapists not to feel sorry for > > her, to treat her as a " normal " child. I don't want others to feel sorry > for > > her. Am I wrong for that? I go to a very small church, and cali is the > only > > child they know with disabilities. The same goes with my family- cali is > the > > only child in family with any kind of disability, so most of them baby > her > > and cry in front of her. Should I just let it go? And should I continue > to > > allow her to attend church with the family? I'd hate to break that weekly > > ritual but I don't wanna make others uncomfortable. I'm sorry for going > on > > about this, but it really upset me and I know I can count on this group > for > > support and advise. Thanks for listening everyone. I feel better just for > > talking bout it. > > Sent from my BlackBerry® smartphone powered by Centennial Wireless. > > > > ------------------------------------ > > > > Autism_in_Girls_and_Women-subscribe > > ------------------------ > > Autism_in_Girls_and_Women-unsubscribe@...! Groups Links > > > > > > > > > > > -- > Marie A. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 My daughter is opposite. She loves being praised at school. She got student of the month, and while she doesn't understand what that means, she understood she did something good and was excited for days. For your daughter I would have been angry at the teachers too. Its so frustrating when they don't seem to listen, especially if it causes your child distress. I'm very blessed to have great teachers that always ask me before they do anything. We keep a notebook and she writes everyday to keep me informed on how Cali's day went. This is the first year we have done this and is great. Cali is nonverbal so I have to rely on her teacher to let me know what's going on. As for church, we are gonna continue to go. The church is working on changing and growing, and hopefully will bring in more children. I think if the services were livelier and had more child-friendly activities she would enjoy it more. I will be patient and do what I can to help others understand Cali. Sent from my BlackBerry® smartphone powered by Centennial Wireless. Hi all! > > Hi everyone! I haven't posted anything in a while..been so busy with the kids.. Today was such a bad day for my daughter- age 6-blind and autistic. I took her to church like always, and today I guess she didn't want to be there. She started fussing so I let her sit with my dad, which usually makes her happy. It didn't help. I gave her headphones to listen to her favorite music and that didn't help either. She started screaming and having a huge meltdown in church. Everyone starts staring, some are giving me dirty looks and some look so sad for me and Cali. I take her as quickly as possible to the nursery, but they can all still hear her. I feel like she is interrupting everyone so I decide to leave. I was doing really well keeping myself together, till an aunt came meet me. She started saying that my daughter was " special " and that everyone understands that cali will have these " moments " and they aren't mad, they feel sorry for her. That made me break down crying. I was told be all her therapists not to feel sorry for her, to treat her as a " normal " child. I don't want others to feel sorry for her. Am I wrong for that? I go to a very small church, and cali is the only child they know with disabilities. The same goes with my family- cali is the only child in family with any kind of disability, so most of them baby her and cry in front of her. Should I just let it go? And should I continue to allow her to attend church with the family? I'd hate to break that weekly ritual but I don't wanna make others uncomfortable. I'm sorry for going on about this, but it really upset me and I know I can count on this group for support and advise. Thanks for listening everyone. I feel better just for talking bout it. > Sent from my BlackBerry® smartphone powered by Centennial Wireless. > > ------------------------------------ > > Autism_in_Girls_and_Women-subscribe > ------------------------ > Autism_in_Girls_and_Women-unsubscribe@...! Groups Links > > > _________________________________________________________________ Looking to change your car this year? Find car news, reviews and more http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Fsecure%2Dau%2Eimrworldwide%2Ecom\ %2Fcgi%2Dbin%2Fa%2Fci%5F450304%2Fet%5F2%2Fcg%5F801459%2Fpi%5F1004813%2Fai%5F8596\ 41 & _t=762955845 & _r=tig_OCT07 & _m=EXT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 le- if your church is that small, would it be possible for you or your pastor to talk to the members as a group, or give out a handout. Something like " my daughter has autism, so sometimes her behaviours may be disturbing or disruptive to some people. We love her and appreciate her for the wonderful person that she is, and we don't consider her or our family to be an object of pity. We appreciate your love, support and prayers in continuing your help to give Cali every opportunity she can have to worship with us and live a full and complete life. " While I don't attend church regularly, when my triplets were born my mom's church lady friends were a HUGE help and support to us- half of the church ended up in our house at one time or another bathing them or doing my laundry. Everyone was aware and supportive when the kids were diagnosed. We go to church very infrequently, and over the years (especially when my son was at home), my kids would often " act out " during the service- it's a very formal, large church, and the pipe organ really is just too loud for my kids. When they were about 5 we were at church for Easter, which is an extremely formal, long service. My son Dylan somehow got away from me, and ended up jumping around on the high altar right in the middle of the service (Anglicans generally don't take too well to that kind of thing). Our wonderful minister turned around, saw him, and said " apparently Dylan's closer to God than anyone else this morning " , and the entire place broke up, and about 10 people went up and helped me to corral him. I've never been worried about taking my kids to church since- our congregation now takes it as a given that will be hiding under a pew with headphones on to block the noise, and occasionally making commentary throughout prayers and the sermon. Sometimes I think that one of the keys is just letting people how you feel about autism and your daughter, and then they will have more of an idea of how best to support you. I always feel badly for my religious friends whose temples, synagogues or churches just haven't quite figured out how to deal with families with special needs yet. It sounds like you're in a great church, so people like you make a big difference. good luck, Jen pinkcallieblind@... wrote: > Thanks for bringing a smile to my face. We will continue attending church. Every response I've gotten encouraged me to continue to bring her. I feel she has just much right to be there as anyone else does. Our church is in the process of changing and trying to bring in more people. They will never grow if they can't accept people of all different types. Maybe cali can teach them things just by her presence. I'm not trying to make the members look bad, by no means are they bad, they just don't know what to do in these situations. But they will have to learn, Cali isn't going anywhere!! Thanks again! > > le > > Sent from my BlackBerry® smartphone powered by Centennial Wireless. > > > > Hi all! > > > > > > Hi everyone! I haven't posted anything in a while..been so busy with the > > kids.. Today was such a bad day for my daughter- age 6-blind and autistic. > > I took her to church like always, and today I guess she didn't want to be > > there. She started fussing so I let her sit with my dad, which usually makes > > her happy. It didn't help. I gave her headphones to listen to her favorite > > music and that didn't help either. She started screaming and having a huge > > meltdown in church. Everyone starts staring, some are giving me dirty looks > > and some look so sad for me and Cali. I take her as quickly as possible to > > the nursery, but they can all still hear her. I feel like she is > > interrupting everyone so I decide to leave. I was doing really well keeping > > myself together, till an aunt came meet me. She started saying that my > > daughter was " special " and that everyone understands that cali will have > > these " moments " and they aren't mad, they feel sorry for her. That made me > > break down crying. I was told be all her therapists not to feel sorry for > > her, to treat her as a " normal " child. I don't want others to feel sorry for > > her. Am I wrong for that? I go to a very small church, and cali is the only > > child they know with disabilities. The same goes with my family- cali is the > > only child in family with any kind of disability, so most of them baby her > > and cry in front of her. Should I just let it go? And should I continue to > > allow her to attend church with the family? I'd hate to break that weekly > > ritual but I don't wanna make others uncomfortable. I'm sorry for going on > > about this, but it really upset me and I know I can count on this group for > > support and advise. Thanks for listening everyone. I feel better just for > > talking bout it. > > > Sent from my BlackBerry® smartphone powered by Centennial Wireless. > > > > > > ------------------------------------ > > > > > > Autism_in_Girls_and_Women-subscribe > > > ------------------------ > > > Autism_in_Girls_and_Women-unsubscribe@...! Groups Links > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 That's a great idea. I will talk to the minister about doing something to inform the members on autism. I think he would be very understanding. He has an older brother that is in an institution. They have never said exactly what he has but the behavior issues sound like extreme ASD. He has been institutionalized for over 30 years. When my grandfather was still the minister he talked about her many times in his sermons but that was before she was diagnosed with autism. He still preaches every now and then, so maybe he could talk about it in a sermon. Thanks for the ideas. le Sent from my BlackBerry® smartphone powered by Centennial Wireless. Hi all! > > > > > > Hi everyone! I haven't posted anything in a while..been so busy with the > > kids.. Today was such a bad day for my daughter- age 6-blind and autistic. > > I took her to church like always, and today I guess she didn't want to be > > there. She started fussing so I let her sit with my dad, which usually makes > > her happy. It didn't help. I gave her headphones to listen to her favorite > > music and that didn't help either. She started screaming and having a huge > > meltdown in church. Everyone starts staring, some are giving me dirty looks > > and some look so sad for me and Cali. I take her as quickly as possible to > > the nursery, but they can all still hear her. I feel like she is > > interrupting everyone so I decide to leave. I was doing really well keeping > > myself together, till an aunt came meet me. She started saying that my > > daughter was " special " and that everyone understands that cali will have > > these " moments " and they aren't mad, they feel sorry for her. That made me > > break down crying. I was told be all her therapists not to feel sorry for > > her, to treat her as a " normal " child. I don't want others to feel sorry for > > her. Am I wrong for that? I go to a very small church, and cali is the only > > child they know with disabilities. The same goes with my family- cali is the > > only child in family with any kind of disability, so most of them baby her > > and cry in front of her. Should I just let it go? And should I continue to > > allow her to attend church with the family? I'd hate to break that weekly > > ritual but I don't wanna make others uncomfortable. I'm sorry for going on > > about this, but it really upset me and I know I can count on this group for > > support and advise. Thanks for listening everyone. I feel better just for > > talking bout it. > > > Sent from my BlackBerry® smartphone powered by Centennial Wireless. > > > > > > ------------------------------------ > > > > > > Autism_in_Girls_and_Women-subscribe > > > ------------------------ > > > Autism_in_Girls_and_Women-unsubscribe@...! Groups Links > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Thanks eric. I wish I knew what sets her off but she is nonverbal so she can't give me any clues to what bothers her. I know tags in clothing was one thing that bothere her because she would pull on them. So now we cut them all out . One less thing to make her mad! Her brother is another thing that seems to make her mad. When he starts making noise or fussing her mood changes. But I can't do anything about that. She was my only child for 5 years so I guess its hard for her to accept him and his noises just aggravate her. He is almost 2 and is a super hyper talkative kid and she likes things quiet besides her music. We don't really have any place I can bring her at church. The other room at church is used for junior church with a nursery in it. When I bring her in there it disrupts the other children and she can still be heard in the church. We have a huge building outside but its usually locked and you can't hear anything in there. We will just keep trying and maybe allow her to go to junior church. We tried before about 2 years ago and she didn't like, but she might do better now. le Sent from my BlackBerry® smartphone powered by Centennial Wireless. Re: Hi all! In a message dated 3/1/2009 8:29:50 P.M. Eastern Standard Time, pinkcallieblind@... writes: The same goes with my family- cali is the only child in family with any kind of disability, so most of them baby her and cry in front of her. Should I just let it go? And should I continue to allow her to attend church with the family? I'd hate to break that weekly ritual but I don't wanna make others uncomfortable. I'm sorry for going on about this, we have a room we sit in the back in where we can listen. abby doesn't like crowds and gets nevous around a lot of people. somedays my daughter can go to our 'church' somedays no. try to find out what is upsetting her if you can...its hard to do often. she may have just had an off day. when abby was 2 she screamed a lot. and we would have to leaver early but going regularly got her used to it. hang in there... eric abbys dad **************Need a job? Find employment help in your area. (http://yellowpages.aol.com/search?query=employment_agencies & ncid=emlcntusyelp00\ 000005) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 Hi. Sorry to jump in on this thread so late. I take my daughter to church every sunday. She is 8 and has HFA. She has severe behavioural problems and will often climb over the chairs or knock them over, throw things, scream randomly, hits other children around her etc etc. It can be very difficult. She doesn't always want to go into the Junior church as they play very loud, boistrous games. When she stays with me she will climb all over me and often sits on my shoulders. I get some pretty horrid looks but I don't care anymore. I'd rather she sat on my shoulders and flapped her hands than running around breaking things. I get told she obviously doesn't get enough discipline, she is manipulating me, etc etc. There is even a lady there who has a teenage son with autism and she often likes to make comments about my daughters behaviour. Her son does not have the behavioural problems that has, not because she is a better parent, but because his autism is totally different to 's. Luckily our minister is very understanding and he lets have a little 'den' under a table in the foyer where she hides things like the church bibles, song books, leaflets, cups, and even the flower dislays!!! He just tidies it all away once we have gone (if I try to tidy it while she is still in the building, she goes beserk!). So, you are not alone. It is hard but you will always get people who just don't understand and those who just don't want to understand. We also have 3 adults with downs syndrome in our congregation and they are very well looked after. One gentleman likes to shout out during the sermon and no one minds at all. A lady needs help with toiletting and any of the ladies in the church will offer to help her. My daughter does not get so much understanding I think because she looks so 'normal' and people hear her having an intelligent conversation with me so don't understand when she starts meowing like a cat and hissing and spitting at people!! Hope things get better for you soon. Does your church have a ladies group - for the older ladies? Sometimes they are a good place to start - you can arrange to give a 'talk' about autism to the group. I am hoping to do something like this with our ladies group. Once you get the old dears on your side it gets better (they run the church after all don't they??). Sorry, that was sarcasm. J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 danielle thanks to say of those nice words to me but in true it took of me a long time to get where i to be in this life. but for me I to think because I to had of no one and no family support i to had to figure out life by self, it was of very hard for me to learn what i to have but one of the strengths was of my love of to read an so readed everythings could to learn of right ways in life because all I to be of modeled all yucky destructive things and that was of to lock of me to an unhealthy life and sense of self. but if was of hungry fro example I to had to find a way to access that. for me to lern had of to watch much things in almost a study like fashions. often though if I to tried of to cook the same things certain processes were of missing and it did not turn out the same but I to never gave up because the motivation for example to eat spaghetti was of strong and so for me to access that had to learn how to cook that and now can and have been of able to for many many years now but many foods no matter how hard it does not come out right except for homemade soups, and casseroles I to do well with those but not other things. same with laundry had to read of teh manual much so after to get of a access to a washer and dryer much years back and once the husband model once from the manual to me it was of slowly learned and now much much good at sorting and wahing of the clothings and much particular to the folding the minute the dryer stops to not allow wrinkles to the clothings. anyways just wanted to sahre hold onto that dream because she is of little now you nor no one knows where she will be of when she is of 20, 30, 40. for me much of my true over all understand of my world around me and the true gains of functionality came in my ages of 30's/ but I to think and wonder over all if i to have maxed out on my developmental age. I to be of scattered in that and some parts are of estimated to be of 3-4 and most average out to be of 10, but other parts of me the intellectual autistic side of me gifts me with much ability to gather knowledge and to store it for later use and some of it over times gets transfered to actual actions not just scripts of words. I to also be of greatly challenged in words and yet also very blessed by them. I to have of them and that is of a gift to have when one is of with autism because not all will reach of that ability to have of words in a functional way of using them for communication and needs. I to also be of blessed in words of being of able to use them when in certain emotional states to create poetry, cant just create a poem it just flows out when in emotional states that causes this form or fashion of words to come in an advanced way and yet poetic way. But it is of all this mixed up way and levels of development that create and has molded me to be of who I to be of in this life now. when no PTSD issues are powerfully consuming me I to be of to feel okay with self, but when the PTSD is of consuming me all the life experiences of rejection, abandonment, isolations, outcasted, and painful attacks to me from the birth family of me causes of me to feel great pain and feel emotionally traumatized and angry inside for never feeling of to had of any real closure to it all. it cycles me to great states of fear, rage, pains, sad, and all the yucky sort of emotional feelings and not sure of all of the names to them but I to know I to feel probably all of them and this is of why cant sort of really name of it but try to from the list of yucky emotions names which are of seen as negative emotional states. also wanted to say never rage at others bu toward self not with intent at all but when it builds it just comes out. if any things triggers me and I to have of no warning of it , it causes of that reaction to me. I to just end up slapping or socking my head, it is of frustrating in public when it happens because people then state and this increases of the oucomes of the PTSD in me. but to change of the subject I to be of had soem good words with debi off line she is of a much good friend to me and I to be of so hopeful to get of to see of her soon. this is of helathy for me to meet of the people at times i to developed good online friendships in. Just like when I to met Nuha I to really liked of her and her family even though was of anxious to meet of new and go with complete strangers to me she just felt of safe and her little girl is of beautiful. she is of one of the cultural looks i to like much so. I to also like of her accent and back and forth words she has of strong with her daughter and they took me to a much nice place to eat it is of a place where the past presidents has been to eat. it was full of architecure and creative things all around we were of there near the christmas time and it was of off all decorated in such which was fun stimmy. the food was of much good. sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 danielle I to love of you heart towards you daughter and you views are of very much to shout metaphorically you love for her. but wanted to say please not to let anyone with the mind set of fixing her through typical discipline take of her as this will cause of her heart so much emotional traumas and pains for her to be of treated unjustly by their mindsets. no traditional methods do not work for us for a multitude of reasons, but discipline does work if one finds the way we learn and find what reinforces or motivates us and uses that as a positive energy for us to work in. while many of us might not be of strong emotional communicators and or communicators at all, but for we do FEEL and we are of so much sensitive to WHAT we feel even if we do not know of the names to what we are of feeling. biting is of a strong message in communications. I to be of think you callie is of probably giving subtle signals and cues that are of not easily read if one is of not seeing it for what it is thus a break down of the communication creates a huge barrier of frustrations that build and causes of the reactions to such things as biting of the nearest one. Also she may not have any emotional states towards the person nearest of her but has learned by cause and affect if I to bite help comes to my rescue and thus still communicating.... but she has not yet learned a more appropriate way of getting that help or support or need met. thus resorting back to problem solving A whic tends to transfer as the only problem solving skill we have that appears to be affective in all cases for us because each time consistently someone comes. there is of also the overload and sensory causes of biting the need for oral deep pressure such as chewing and such and when looking at typical child development in that first year of life that is of a strong strong developmental process of chewing, mouthing, sucking, it iso fmuch oral focused at that age and because of our delay in development many of our kids get of stuck into that developmental stage of oral development. hitting is of like biting but also can be of a over powerful surge of emotions that is of consuming us rapidly within that causes of the sudden reaction to hit selves or others too. Many typical kids when frighten migh cover their eyes to sort of hide.... many kids of autism when feared for some reasons actually cover their ears. I to cover of my ears too as my frist impulsive reaction to fear or will hit or sock self as the first reaction depending on the intensity of the fear. if really agitated and felt misuderstood in my attempts to commun icate will cause of self pinching and scratching of the arms and or face but rare for me unless it is of a build up of over time that has not been of calmed in me. I to also do some self stim things that seem to come and go but are of consistent such as finger flicking and espeically in driving when getting frustrated... but also chin hitting and or swiping it is of more a tapping over and over than an actual hit. if excited i to tend to do this odd gesture and try of not to because much ask of me over this one but I to tend to hit the top of my head with more of a gentle sort of hits and then sort of finger flick over and or on the top of my head now aware of doing this until it is of pointed out and or one is of staring to me oddly then it causes me to self check and regulate those impulses but odd actions of these are of often EMOTIONS being expressed in odd non verbal fashions. I to have much odd hand movements and or gesturings finger twisting, hand twisting, finger crossing and stimming off other body parts such as chin, nose, head, stomach. On my tummy I to tap it much so with my thumbs over and over when anxious but happy. much pacing too and if one knows of me my pacing can e of distinuished from very agitated and in distress sort of pacing and or my anxious unsure of things and also when happy sort of pacing. but one has to be of to know of me well to see of the difference of them. so when able too sit and just observe and see if you can begin to see a pattern of you daughters subtle ways of communicating and dont intervene yet but observe to see what it escalates too when unchecked.... what things does she begin to show of you when the sublte begins to of more noted and then to when it leads to meltdown states. watch this sort of things on different days , different times of the day ect..... and pick up the little non verbal words she is of speaking with actions and so called behavior and once you get of a good base line of what the subtle looks like then begin to start to de-escalate the build up at that state instead of waiting for the meltdown to intervene. well I to need to take of a power nap and rest of this brain as going to Missys school and to the bank and to the therpay and then to et and back to the school is of too much community time for me and the brain of me is of overly exhausted from it. sondra sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 > Sondra, Before we knew she was autistic we tried different ways of disciplining her, but it made it worse. She would scream louder and bite herself and harm herself more. She would seem to fall into a depression afterwards. She probably thought we were just being mean to her. After her therapists and teaches saw how she reacted, they agreed it was more damaging than helpful to discipline her. danielle yes it is because she may be to have felt greatly punished for doing her best to communicate her needs and or wants. you and others reaction to her attempts to communicate feared her gretly and maybe caused a brief internal shut down. I to experience this much so even now at my own age. Even though i to have of words not always able to use them effectivley to communicate effectively my wants or needs and or get of so much understood in my attempts. especially verbal modes when expected to have faster process times. but in my other post to you there is of much things shared of what to do instead..... study the subtle things such as one little girl tends to do more nail picking when anxious and if no intervention is of done at the nail picking stage it will cause of a full meltdown within time. intervention does not mean of punishment.... but before any intervention is of given one has to understand the subtle forms of communication we may be of sending in our own body language(not you body languge but hers)because she does give them and there may be of hidden patterns to it if one studies of it with good attention and focus. also try of the best to go into an autistic mindset of sensory and thinking. One little boy did of this by tring to cue those around him he was of curious to this play toy in the preschool class. he paced around near it , he rocked and flapped near it, he picked up coins and sifted them over the toy and he was of trying hims best to communicate What is this , How does it work, show me, let me play it, play it with me sorts of words but he was of not verbal so he used what he could to say help me.... when hims attempts were not seen for what they were he escalated to aggressive jumping and screams and pinching and rapid finger clicking and stomping of hims feet. he was clearly now escalated and upset now. If no one sat back and observed this no one would see of it as it was ( the mom had asked of me to observe of him) this child is of usually a very calm passive child, he is of affectionate and wants to be part of but is of usually considered the withdrwn child and aloof to those who lack knowing of him. so they felt this childs reactions near the toy was of him just displaying autism///// never seeing him as a communicator because he had no words.. but he was communicating... so the best things any parent can do is of observe and watch and see what the little subtle body lanuage things are of doing.... then see the patterns and thing to self what is of he/she trying to communicate. dont jump to assumptions but write of guesses and then explore them at a later time with the child. another child often hoarded things when anxious her hoarding were like a toddler and a security blanket but she hoarded paper and needed of it to comfort self, once understood what she was doing one can then gauge the paper hoarding her first stage as the time for need to calm her and help her feel secure.... without mention of the so called behavior of telling her to put the paper back, or such words as that. one should not even mention of the behavior because it can increase it, but say to the child I to think we need to take a break to get in the netted swing or to get a drink and or take a walk... that is of the intervention, helping the child regulate is an intervention, calming the child is of a intervention, and things of this so it does not have to be of a negative but it should match the needs, if the child for example is of over stimulated you dont want to take them to an overstimulating activity... sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 danielle you got it and now remember too her non verbals will not amtch typical non verbals they will be of a language all her own. so donot try to interpret it to typical non verbals as it may never match up... try to read her ways of showing you anxiety, her way of showing you too loud, her way of showing you hungry, she is of showing you but as a interpretur of her language you will have of to study of it after all that is of how all cultures begin to learn another cultures language is of to study it, not just the spoken as it is of learned through study of the observations and learning of the patterns of actions, symbols and sounds, that latter is of understood as true language that can be of understood. we on the spectrum have of to do this daily to the NT worlds way of using words and things and is of how we can at times be of good recepters but not good expressors. sondra Quote Link to comment Share on other sites More sharing options...
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