Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 , Blessings to you and your family. My daughter was diagnosed last year at almost three. I was mentally prepared too, but I know it's still a sinking feeling to have that professional agree with you. As far as telling family and friends, my guess is that they probably have already prepared themselves. In my case, my parents knew that something wasn't right with our daughter. She went from happy, laughing, responsive and somewhat vocal, to no language, and not responding to sounds. So it was obvious something was going on. Maybe it's similar in your case. We told other people gradually, little by little. You don't have to make a big announcement. There are lots of web sites you can point them to. TACA has a great web site and with all of the McCarthy publicity, that might be something that would help them. She has a couple of videos: http://www.talkaboutcuringautism.org/index.htm Look at the 'Hope After Diagnosis' and 'Child was just diagnosed with autism' and see if those help. Marie Telling family and friends Our soon-to-be three year old was officially diagnosed today by the developmental pediatrician. My husband and I were mentally prepared so we're doing okay. We're emotionally exhausted, but okay. Now we wonder what's the best way to tell family and friends? Is there a brochure or card we can hand out that answers most questions we're going to encounter? I'm seriously dreading the thought of family gatherings over the upcoming holidays. We'd love to hear about how others have told loved ones. With appreciation, __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 , Blessings to you and your family. My daughter was diagnosed last year at almost three. I was mentally prepared too, but I know it's still a sinking feeling to have that professional agree with you. As far as telling family and friends, my guess is that they probably have already prepared themselves. In my case, my parents knew that something wasn't right with our daughter. She went from happy, laughing, responsive and somewhat vocal, to no language, and not responding to sounds. So it was obvious something was going on. Maybe it's similar in your case. We told other people gradually, little by little. You don't have to make a big announcement. There are lots of web sites you can point them to. TACA has a great web site and with all of the McCarthy publicity, that might be something that would help them. She has a couple of videos: http://www.talkaboutcuringautism.org/index.htm Look at the 'Hope After Diagnosis' and 'Child was just diagnosed with autism' and see if those help. Marie Telling family and friends Our soon-to-be three year old was officially diagnosed today by the developmental pediatrician. My husband and I were mentally prepared so we're doing okay. We're emotionally exhausted, but okay. Now we wonder what's the best way to tell family and friends? Is there a brochure or card we can hand out that answers most questions we're going to encounter? I'm seriously dreading the thought of family gatherings over the upcoming holidays. We'd love to hear about how others have told loved ones. With appreciation, __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 Does your family know you have been suspecting? Do any of them live near or mostly out of town? My experience was that I told everyone about 4 months prior to the dx what I suspected. Some agreed, some disagreed & felt I was creating it by purusing the dx (da'nile ain't just a river!) and many more were in between the two. I got both grandparents books, had a binder where I kept all her info out on the coffee table at her 2nd birthday (was dxed 2 wks prior) and I was very disappointed to find that no one was interested in research, reading, or anything else. I think most people had a " what does this mean to me " feeling and that was about it. I do remember Craig's parents never told his grandmother. She died about 9 months after the dx. I remember just before she died she said, " Can she not talk at all? " I think she suspected something was badly wrong but since Craig's parents didn't want to tell her, I was in no hurry. She was sort of a mean woman, I didn't want to risk her saying something ugly to me. Looking back, I wish I had, she had a son everyone called " slow " who I think probably had Asperger Syndrome. She might have had some encouraging thoughts mother-to-mother. Who knows, water under the bridge. What I did was tell people straight up, " Allie has autism. " Autism has never been an ugly or tabboo word in our home, it's just part of life...the sky is blue, Allie has autism. I did write a book that I've found can be helpful to some people, it was geared toward children but it seems adults like it as much as anyone, lol. It's called " 's Little Sister: A Story about Autism. " http://www.target.com/gp/detail.html/601-5293636-2660112?asin=1413717241 & afid=ya\ hoosspplp_bmvd & lnm=1413717241|Books_:_'s_Little_Sister & ref=tgt_adv_XSNG10\ 60 I sell it for $14, shipping & all, btw. I think that's a rediculous price! I wouldn't sell it for that much but the publisher is a bit extreme in pricing, I think. If you are interested, and please don't feel like I'm pushing it, email me & I'll send you my paypal info. There is a letter that usually circulates around the holidays that some suggest sending to family members. It explains stuff like the child may find hugs painful, it's no reflection on you...please provide a quiet place where my child can retreat during family gatherings, etc. Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 Does your family know you have been suspecting? Do any of them live near or mostly out of town? My experience was that I told everyone about 4 months prior to the dx what I suspected. Some agreed, some disagreed & felt I was creating it by purusing the dx (da'nile ain't just a river!) and many more were in between the two. I got both grandparents books, had a binder where I kept all her info out on the coffee table at her 2nd birthday (was dxed 2 wks prior) and I was very disappointed to find that no one was interested in research, reading, or anything else. I think most people had a " what does this mean to me " feeling and that was about it. I do remember Craig's parents never told his grandmother. She died about 9 months after the dx. I remember just before she died she said, " Can she not talk at all? " I think she suspected something was badly wrong but since Craig's parents didn't want to tell her, I was in no hurry. She was sort of a mean woman, I didn't want to risk her saying something ugly to me. Looking back, I wish I had, she had a son everyone called " slow " who I think probably had Asperger Syndrome. She might have had some encouraging thoughts mother-to-mother. Who knows, water under the bridge. What I did was tell people straight up, " Allie has autism. " Autism has never been an ugly or tabboo word in our home, it's just part of life...the sky is blue, Allie has autism. I did write a book that I've found can be helpful to some people, it was geared toward children but it seems adults like it as much as anyone, lol. It's called " 's Little Sister: A Story about Autism. " http://www.target.com/gp/detail.html/601-5293636-2660112?asin=1413717241 & afid=ya\ hoosspplp_bmvd & lnm=1413717241|Books_:_'s_Little_Sister & ref=tgt_adv_XSNG10\ 60 I sell it for $14, shipping & all, btw. I think that's a rediculous price! I wouldn't sell it for that much but the publisher is a bit extreme in pricing, I think. If you are interested, and please don't feel like I'm pushing it, email me & I'll send you my paypal info. There is a letter that usually circulates around the holidays that some suggest sending to family members. It explains stuff like the child may find hugs painful, it's no reflection on you...please provide a quiet place where my child can retreat during family gatherings, etc. Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 Hi - I know how you feel. My daughter was diagnosed on Oct 4th. However, we've been going though years of therapy since age 1. So this was a blessing in our eyes. Communicting with friends and family is important. It's overwhelming enough learning about the diagnosis and the treatment plans. Having people asking you questions that you don't know because you haven't " gotten there " can become even more overwhelming. one way I have kept friends and family in the loop is creating a website just for my daughter. 80% of it is just fun stuff for her and 10% of it is a journal/update on her progress and where i'm at with all of it. There's stuff from appointments, to history, to " things to know " etc. That way I don't feel guilty if I forget to tell everyone the details and if people (therapist, doctors, friends, family, teachers) have questions they can just refer to the website. Not to mention, It's been a saving grace for me if i'm too tired or just didn't have the energy to explain. The fun stuff for her is to encourage her strenghs, accomplishments, projects as well as her intrest. One thing the doctor said to me that stuck in my head is these kids need the encouragement and support especially when it comes to their strenghs. If they can find that interest they adore, encourage it as much as possible. It can become their coping mechinism in the future. So for my daughter - it's her art. I'm hoping in the coming weeks, finding an art therapist will also reinforce her talent as well as be theraputic. The times she could not say a word to me - she could always express it in her art. You can visit her website at http://art-of-vee.com. specifically you can visit http://art-of-vee.com/diagnosis.html. Kindest regards, http://gophergirl.net angelakroberts wrote: Our soon-to-be three year old was officially diagnosed today by the developmental pediatrician. My husband and I were mentally prepared so we're doing okay. We're emotionally exhausted, but okay. Now we wonder what's the best way to tell family and friends? Is there a brochure or card we can hand out that answers most questions we're going to encounter? I'm seriously dreading the thought of family gatherings over the upcoming holidays. We'd love to hear about how others have told loved ones. With appreciation, __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 Hi - I know how you feel. My daughter was diagnosed on Oct 4th. However, we've been going though years of therapy since age 1. So this was a blessing in our eyes. Communicting with friends and family is important. It's overwhelming enough learning about the diagnosis and the treatment plans. Having people asking you questions that you don't know because you haven't " gotten there " can become even more overwhelming. one way I have kept friends and family in the loop is creating a website just for my daughter. 80% of it is just fun stuff for her and 10% of it is a journal/update on her progress and where i'm at with all of it. There's stuff from appointments, to history, to " things to know " etc. That way I don't feel guilty if I forget to tell everyone the details and if people (therapist, doctors, friends, family, teachers) have questions they can just refer to the website. Not to mention, It's been a saving grace for me if i'm too tired or just didn't have the energy to explain. The fun stuff for her is to encourage her strenghs, accomplishments, projects as well as her intrest. One thing the doctor said to me that stuck in my head is these kids need the encouragement and support especially when it comes to their strenghs. If they can find that interest they adore, encourage it as much as possible. It can become their coping mechinism in the future. So for my daughter - it's her art. I'm hoping in the coming weeks, finding an art therapist will also reinforce her talent as well as be theraputic. The times she could not say a word to me - she could always express it in her art. You can visit her website at http://art-of-vee.com. specifically you can visit http://art-of-vee.com/diagnosis.html. Kindest regards, http://gophergirl.net angelakroberts wrote: Our soon-to-be three year old was officially diagnosed today by the developmental pediatrician. My husband and I were mentally prepared so we're doing okay. We're emotionally exhausted, but okay. Now we wonder what's the best way to tell family and friends? Is there a brochure or card we can hand out that answers most questions we're going to encounter? I'm seriously dreading the thought of family gatherings over the upcoming holidays. We'd love to hear about how others have told loved ones. With appreciation, __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 One really comprehensive book is " Understanding Autism for Dummies " . Order a copy and read it yourself first, give it your " approval " and then order copies for the family. > > Our soon-to-be three year old was officially diagnosed today by the > developmental pediatrician. My husband and I were mentally prepared so > we're doing okay. We're emotionally exhausted, but okay. Now we > wonder what's the best way to tell family and friends? Is there a > brochure or card we can hand out that answers most questions we're > going to encounter? I'm seriously dreading the thought of family > gatherings over the upcoming holidays. We'd love to hear about how > others have told loved ones. > > With appreciation, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 One really comprehensive book is " Understanding Autism for Dummies " . Order a copy and read it yourself first, give it your " approval " and then order copies for the family. > > Our soon-to-be three year old was officially diagnosed today by the > developmental pediatrician. My husband and I were mentally prepared so > we're doing okay. We're emotionally exhausted, but okay. Now we > wonder what's the best way to tell family and friends? Is there a > brochure or card we can hand out that answers most questions we're > going to encounter? I'm seriously dreading the thought of family > gatherings over the upcoming holidays. We'd love to hear about how > others have told loved ones. > > With appreciation, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Hi Marie, I took a look at the website you suggested and it has a lot of great information. Thank you! My mother has been our daughter's biggest advocate so far when it comes to keeping family members informed. Thank Heaven for my mom! Our daughter reached all of her developmental milestones on time except for language and communication/social. We kept being told by well-meaning family members that " her big sister does all the talking for her " or " you baby her so she doesn't have to talk " or " take the pacifier away and turn off the tv and she'll be fine " . One aunt even said, " Are you sure she's not just lazy? " (That's my favorite line of all!) Then there's my mother-in-law who thinks my husband and I are wasting our time trying to find answers (she said this after our daughter's genetics tests came back negative). And my father-in-law who avoids us because he's dealing with past guilt issues of his own. He had a developmentally delayed daughter in his first marriage and signed over all rights to the mother. He hasn't seen his daughter in years and admits it's hard to look at our daughter without thinking about his. Anyway, while yesterday's diagnosis was a bit " numbing " for us, my husband and I woke up this morning feeling a sense of calmness. It's like the diagnosis has enabled us to sigh with relief and let go of some of the anxiety we've been carrying around. Many thanks to you, > > , > Blessings to you and your family. My daughter was diagnosed last year at almost three. I was mentally prepared too, but I know it's still a sinking feeling to have that professional agree with you. > As far as telling family and friends, my guess is that they probably have already prepared themselves. In my case, my parents knew that something wasn't right with our daughter. She went from happy, laughing, responsive and somewhat vocal, to no language, and not responding to sounds. So it was obvious something was going on. Maybe it's similar in your case. > We told other people gradually, little by little. You don't have to make a big announcement. There are lots of web sites you can point them to. TACA has a great web site and with all of the McCarthy publicity, that might be something that would help them. She has a couple of videos: > http://www.talkaboutcuringautism.org/index.htm > Look at the 'Hope After Diagnosis' and 'Child was just diagnosed with autism' and see if those help. > Marie > > > Telling family and friends > > Our soon-to-be three year old was officially diagnosed today by the > developmental pediatrician. My husband and I were mentally prepared so > we're doing okay. We're emotionally exhausted, but okay. Now we > wonder what's the best way to tell family and friends? Is there a > brochure or card we can hand out that answers most questions we're > going to encounter? I'm seriously dreading the thought of family > gatherings over the upcoming holidays. We'd love to hear about how > others have told loved ones. > > With appreciation, > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Hi Marie, I took a look at the website you suggested and it has a lot of great information. Thank you! My mother has been our daughter's biggest advocate so far when it comes to keeping family members informed. Thank Heaven for my mom! Our daughter reached all of her developmental milestones on time except for language and communication/social. We kept being told by well-meaning family members that " her big sister does all the talking for her " or " you baby her so she doesn't have to talk " or " take the pacifier away and turn off the tv and she'll be fine " . One aunt even said, " Are you sure she's not just lazy? " (That's my favorite line of all!) Then there's my mother-in-law who thinks my husband and I are wasting our time trying to find answers (she said this after our daughter's genetics tests came back negative). And my father-in-law who avoids us because he's dealing with past guilt issues of his own. He had a developmentally delayed daughter in his first marriage and signed over all rights to the mother. He hasn't seen his daughter in years and admits it's hard to look at our daughter without thinking about his. Anyway, while yesterday's diagnosis was a bit " numbing " for us, my husband and I woke up this morning feeling a sense of calmness. It's like the diagnosis has enabled us to sigh with relief and let go of some of the anxiety we've been carrying around. Many thanks to you, > > , > Blessings to you and your family. My daughter was diagnosed last year at almost three. I was mentally prepared too, but I know it's still a sinking feeling to have that professional agree with you. > As far as telling family and friends, my guess is that they probably have already prepared themselves. In my case, my parents knew that something wasn't right with our daughter. She went from happy, laughing, responsive and somewhat vocal, to no language, and not responding to sounds. So it was obvious something was going on. Maybe it's similar in your case. > We told other people gradually, little by little. You don't have to make a big announcement. There are lots of web sites you can point them to. TACA has a great web site and with all of the McCarthy publicity, that might be something that would help them. She has a couple of videos: > http://www.talkaboutcuringautism.org/index.htm > Look at the 'Hope After Diagnosis' and 'Child was just diagnosed with autism' and see if those help. > Marie > > > Telling family and friends > > Our soon-to-be three year old was officially diagnosed today by the > developmental pediatrician. My husband and I were mentally prepared so > we're doing okay. We're emotionally exhausted, but okay. Now we > wonder what's the best way to tell family and friends? Is there a > brochure or card we can hand out that answers most questions we're > going to encounter? I'm seriously dreading the thought of family > gatherings over the upcoming holidays. We'd love to hear about how > others have told loved ones. > > With appreciation, > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Hi Debi, Thanks so much for telling me about your book! It might come in very handy when the time comes to explain things to our older daughter, who is just 4. Most of our immediate family knows our youngest daughter has been receiving ST and OT, but I don't think anyone suspects autism. After all (sarcastic), autism wouldn't happen to US. And, it's just the latest trend like ADHD was a few years back. (You're so right about da'Nile!) We live about an hour away from most family and many have only been around our daughter during the holidays. The last two family gatherings I've had to leave early with her because she became so overstimulated she began throwing tantrums. I was able to simply say, " she's just tired and needs a nap " and no one (other than myself and my husband) suspected anything. Relating to your family's disinterest in the information you put out at your daughter's birthday party, I've been most disappointed with my in-laws' lack of interest and support. Their heads are so far in the sand! They believe if they don't see it, it isn't there so they hardly come around at all. I once read somewhere that once a family receives a diagnosis like autism for their child, family and friends either become rocks of support, excuse makers ( " I wish I could be there to help, but... " ) or gingerbread men who run away as fast as they can. This has really helped me come to grips with the fact that no matter how much my husband and I want support from loved ones, we may never get it from some. Thank you for sharing your personal stories with me. All the best, > > Does your family know you have been suspecting? Do any of them live > near or mostly out of town? My experience was that I told everyone > about 4 months prior to the dx what I suspected. Some agreed, some > disagreed & felt I was creating it by purusing the dx (da'nile ain't > just a river!) and many more were in between the two. I got both > grandparents books, had a binder where I kept all her info out on the > coffee table at her 2nd birthday (was dxed 2 wks prior) and I was very > disappointed to find that no one was interested in research, reading, > or anything else. I think most people had a " what does this mean to > me " feeling and that was about it. > > I do remember Craig's parents never told his grandmother. She died > about 9 months after the dx. I remember just before she died she said, > " Can she not talk at all? " I think she suspected something was badly > wrong but since Craig's parents didn't want to tell her, I was in no > hurry. She was sort of a mean woman, I didn't want to risk her saying > something ugly to me. Looking back, I wish I had, she had a son > everyone called " slow " who I think probably had Asperger Syndrome. She > might have had some encouraging thoughts mother-to-mother. Who knows, > water under the bridge. > > What I did was tell people straight up, " Allie has autism. " Autism has > never been an ugly or tabboo word in our home, it's just part of > life...the sky is blue, Allie has autism. I did write a book that I've > found can be helpful to some people, it was geared toward children but > it seems adults like it as much as anyone, lol. It's called " 's > Little Sister: A Story about Autism. " > > http://www.target.com/gp/detail.html/601-5293636-2660112? asin=1413717241 & afid=yahoosspplp_bmvd & lnm=1413717241|Books_:_'s _Little_Sister & ref=tgt_adv_XSNG1060 > > I sell it for $14, shipping & all, btw. I think that's a rediculous > price! I wouldn't sell it for that much but the publisher is a bit > extreme in pricing, I think. If you are interested, and please don't > feel like I'm pushing it, email me & I'll send you my paypal info. > > There is a letter that usually circulates around the holidays that > some suggest sending to family members. It explains stuff like the > child may find hugs painful, it's no reflection on you...please > provide a quiet place where my child can retreat during family > gatherings, etc. > > Debi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Hi Debi, Thanks so much for telling me about your book! It might come in very handy when the time comes to explain things to our older daughter, who is just 4. Most of our immediate family knows our youngest daughter has been receiving ST and OT, but I don't think anyone suspects autism. After all (sarcastic), autism wouldn't happen to US. And, it's just the latest trend like ADHD was a few years back. (You're so right about da'Nile!) We live about an hour away from most family and many have only been around our daughter during the holidays. The last two family gatherings I've had to leave early with her because she became so overstimulated she began throwing tantrums. I was able to simply say, " she's just tired and needs a nap " and no one (other than myself and my husband) suspected anything. Relating to your family's disinterest in the information you put out at your daughter's birthday party, I've been most disappointed with my in-laws' lack of interest and support. Their heads are so far in the sand! They believe if they don't see it, it isn't there so they hardly come around at all. I once read somewhere that once a family receives a diagnosis like autism for their child, family and friends either become rocks of support, excuse makers ( " I wish I could be there to help, but... " ) or gingerbread men who run away as fast as they can. This has really helped me come to grips with the fact that no matter how much my husband and I want support from loved ones, we may never get it from some. Thank you for sharing your personal stories with me. All the best, > > Does your family know you have been suspecting? Do any of them live > near or mostly out of town? My experience was that I told everyone > about 4 months prior to the dx what I suspected. Some agreed, some > disagreed & felt I was creating it by purusing the dx (da'nile ain't > just a river!) and many more were in between the two. I got both > grandparents books, had a binder where I kept all her info out on the > coffee table at her 2nd birthday (was dxed 2 wks prior) and I was very > disappointed to find that no one was interested in research, reading, > or anything else. I think most people had a " what does this mean to > me " feeling and that was about it. > > I do remember Craig's parents never told his grandmother. She died > about 9 months after the dx. I remember just before she died she said, > " Can she not talk at all? " I think she suspected something was badly > wrong but since Craig's parents didn't want to tell her, I was in no > hurry. She was sort of a mean woman, I didn't want to risk her saying > something ugly to me. Looking back, I wish I had, she had a son > everyone called " slow " who I think probably had Asperger Syndrome. She > might have had some encouraging thoughts mother-to-mother. Who knows, > water under the bridge. > > What I did was tell people straight up, " Allie has autism. " Autism has > never been an ugly or tabboo word in our home, it's just part of > life...the sky is blue, Allie has autism. I did write a book that I've > found can be helpful to some people, it was geared toward children but > it seems adults like it as much as anyone, lol. It's called " 's > Little Sister: A Story about Autism. " > > http://www.target.com/gp/detail.html/601-5293636-2660112? asin=1413717241 & afid=yahoosspplp_bmvd & lnm=1413717241|Books_:_'s _Little_Sister & ref=tgt_adv_XSNG1060 > > I sell it for $14, shipping & all, btw. I think that's a rediculous > price! I wouldn't sell it for that much but the publisher is a bit > extreme in pricing, I think. If you are interested, and please don't > feel like I'm pushing it, email me & I'll send you my paypal info. > > There is a letter that usually circulates around the holidays that > some suggest sending to family members. It explains stuff like the > child may find hugs painful, it's no reflection on you...please > provide a quiet place where my child can retreat during family > gatherings, etc. > > Debi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Great idea! Thanks for the suggestion! > > > > Our soon-to-be three year old was officially diagnosed today by the > > developmental pediatrician. My husband and I were mentally prepared so > > we're doing okay. We're emotionally exhausted, but okay. Now we > > wonder what's the best way to tell family and friends? Is there a > > brochure or card we can hand out that answers most questions we're > > going to encounter? I'm seriously dreading the thought of family > > gatherings over the upcoming holidays. We'd love to hear about how > > others have told loved ones. > > > > With appreciation, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Great idea! Thanks for the suggestion! > > > > Our soon-to-be three year old was officially diagnosed today by the > > developmental pediatrician. My husband and I were mentally prepared so > > we're doing okay. We're emotionally exhausted, but okay. Now we > > wonder what's the best way to tell family and friends? Is there a > > brochure or card we can hand out that answers most questions we're > > going to encounter? I'm seriously dreading the thought of family > > gatherings over the upcoming holidays. We'd love to hear about how > > others have told loved ones. > > > > With appreciation, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 This is so true!!!! I get so jealous, our local ASA group has a couple who are grandparents to three different kids on spectrum by two different kids. They are willing to do *anything* to help. They always comment that they know how overwhelmed all us parents are & they wanna do anything they can to ease the burden. Then you have people like my mother who has never kept any of my kids overnight, except my oldest 1 time, and that was like pulling teeth. I don't know if this helps or not, but I've found the friends I have now are completely different than the ones from 6 years ago. I just couldn't relate any more to my friends of typical kids, nor could they relate to me. Now my closest friends all have kids on spectrum. Sometimes I feel sad about it, but this is the path God has prepared me for, and I feel that my friendships now are way more real than 6 yrs ago. Let's face it, when we are friends with people whose kids draw in feces, we're true friends!!!!! Lol. Debi I once read somewhere that once a family > receives a diagnosis like autism for their child, family and friends > either become rocks of support, excuse makers ( " I wish I could be > there to help, but... " ) or gingerbread men who run away as fast as > they can. This has really helped me come to grips with the fact that > no matter how much my husband and I want support from loved ones, we > may never get it from some. > > Thank you for sharing your personal stories with me. > > All the best, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 This is so true!!!! I get so jealous, our local ASA group has a couple who are grandparents to three different kids on spectrum by two different kids. They are willing to do *anything* to help. They always comment that they know how overwhelmed all us parents are & they wanna do anything they can to ease the burden. Then you have people like my mother who has never kept any of my kids overnight, except my oldest 1 time, and that was like pulling teeth. I don't know if this helps or not, but I've found the friends I have now are completely different than the ones from 6 years ago. I just couldn't relate any more to my friends of typical kids, nor could they relate to me. Now my closest friends all have kids on spectrum. Sometimes I feel sad about it, but this is the path God has prepared me for, and I feel that my friendships now are way more real than 6 yrs ago. Let's face it, when we are friends with people whose kids draw in feces, we're true friends!!!!! Lol. Debi I once read somewhere that once a family > receives a diagnosis like autism for their child, family and friends > either become rocks of support, excuse makers ( " I wish I could be > there to help, but... " ) or gingerbread men who run away as fast as > they can. This has really helped me come to grips with the fact that > no matter how much my husband and I want support from loved ones, we > may never get it from some. > > Thank you for sharing your personal stories with me. > > All the best, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Hi , Love, LOVE, LOVE your website! It's so positive and uplifting. Vee is gorgeous and you are beautiful. You gave me a great idea about how to help my communicate. She has learned a lot of what she knows through music and song. Like Vee uses her art to express herself, can use music and rhymes. The developmental pediatrician told us her center offers free music therapy, thanks to a special grant. We'll certainly be taking part. All the best, > Our soon-to-be three year old was officially diagnosed today by the > developmental pediatrician. My husband and I were mentally prepared so > we're doing okay. We're emotionally exhausted, but okay. Now we > wonder what's the best way to tell family and friends? Is there a > brochure or card we can hand out that answers most questions we're > going to encounter? I'm seriously dreading the thought of family > gatherings over the upcoming holidays. We'd love to hear about how > others have told loved ones. > > With appreciation, > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Hi , Love, LOVE, LOVE your website! It's so positive and uplifting. Vee is gorgeous and you are beautiful. You gave me a great idea about how to help my communicate. She has learned a lot of what she knows through music and song. Like Vee uses her art to express herself, can use music and rhymes. The developmental pediatrician told us her center offers free music therapy, thanks to a special grant. We'll certainly be taking part. All the best, > Our soon-to-be three year old was officially diagnosed today by the > developmental pediatrician. My husband and I were mentally prepared so > we're doing okay. We're emotionally exhausted, but okay. Now we > wonder what's the best way to tell family and friends? Is there a > brochure or card we can hand out that answers most questions we're > going to encounter? I'm seriously dreading the thought of family > gatherings over the upcoming holidays. We'd love to hear about how > others have told loved ones. > > With appreciation, > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 I second it. I think it's an AWESOME book and our own Kassi has sections in it. I talked to our ASA board about giving out a new copy to every new member, but one of the board members felt it would be offensive to give out a book with that title... yep Shanna, you guessed it! Lol, Debi > > > One really comprehensive book is " Understanding Autism for Dummies " . > Order a copy and read it yourself first, give it your " approval " and > then order copies for the family. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 I second it. I think it's an AWESOME book and our own Kassi has sections in it. I talked to our ASA board about giving out a new copy to every new member, but one of the board members felt it would be offensive to give out a book with that title... yep Shanna, you guessed it! Lol, Debi > > > One really comprehensive book is " Understanding Autism for Dummies " . > Order a copy and read it yourself first, give it your " approval " and > then order copies for the family. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2007 Report Share Posted October 21, 2007 Oh music is such a theraputic method for communication!! once had a music therapist she loved. Granted she doesn't have rythem but that doesn't matter. If she loves it definatly encourage it as much as you can. Actually - if i can ever get my butt back to school, i'm considering becoming a music therapist. (my version of art is stick figures and actually has taught me how to draw!) It's helped us emmensly over the years from calming music at night to her certian songs we played when she was happy/sad... etc. What I did is have tapes of songs with stickers of a happy face, sad face etc....i would reinforce it by calling them the happy song, sad song. She would have them accessable where should give me and it helped me tap into how she might have been feeling at the time. You know it's funny, her website as much as work is it is - has been a blessing. It's saved me from telling different people the same story over and over of where she's been, where she is, and where we hope she can go. Sometimes I felt like a broken record especially to people who didn't understand. It does help that i'm I a graphic designer but there are alot of ways to create a website for kids. If you go to www.wordpress.com they offer a free service to create a blog. It can be a way for you to create an online journal of her updates, her growth, as well as network with other parents around the country who have the same experiences. One recommendation my developmental psycholologist told me - is to make a list of all of her symptoms, and things to consider when being with her - wheater it be online or in print form. That way, when there are new teachers, family members, friends who are involved with her - they can be more sensitive to her needs. If you don't have time to explain every detail, they at least have some instructions to go by. I just decided to put it in an online form. Kindest regards, angelakroberts wrote: Hi , Love, LOVE, LOVE your website! It's so positive and uplifting. Vee is gorgeous and you are beautiful. You gave me a great idea about how to help my communicate. She has learned a lot of what she knows through music and song. Like Vee uses her art to express herself, can use music and rhymes. The developmental pediatrician told us her center offers free music therapy, thanks to a special grant. We'll certainly be taking part. All the best, > Our soon-to-be three year old was officially diagnosed today by the > developmental pediatrician. My husband and I were mentally prepared so > we're doing okay. We're emotionally exhausted, but okay. Now we > wonder what's the best way to tell family and friends? Is there a > brochure or card we can hand out that answers most questions we're > going to encounter? I'm seriously dreading the thought of family > gatherings over the upcoming holidays. We'd love to hear about how > others have told loved ones. > > With appreciation, > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2007 Report Share Posted October 21, 2007 Oh music is such a theraputic method for communication!! once had a music therapist she loved. Granted she doesn't have rythem but that doesn't matter. If she loves it definatly encourage it as much as you can. Actually - if i can ever get my butt back to school, i'm considering becoming a music therapist. (my version of art is stick figures and actually has taught me how to draw!) It's helped us emmensly over the years from calming music at night to her certian songs we played when she was happy/sad... etc. What I did is have tapes of songs with stickers of a happy face, sad face etc....i would reinforce it by calling them the happy song, sad song. She would have them accessable where should give me and it helped me tap into how she might have been feeling at the time. You know it's funny, her website as much as work is it is - has been a blessing. It's saved me from telling different people the same story over and over of where she's been, where she is, and where we hope she can go. Sometimes I felt like a broken record especially to people who didn't understand. It does help that i'm I a graphic designer but there are alot of ways to create a website for kids. If you go to www.wordpress.com they offer a free service to create a blog. It can be a way for you to create an online journal of her updates, her growth, as well as network with other parents around the country who have the same experiences. One recommendation my developmental psycholologist told me - is to make a list of all of her symptoms, and things to consider when being with her - wheater it be online or in print form. That way, when there are new teachers, family members, friends who are involved with her - they can be more sensitive to her needs. If you don't have time to explain every detail, they at least have some instructions to go by. I just decided to put it in an online form. Kindest regards, angelakroberts wrote: Hi , Love, LOVE, LOVE your website! It's so positive and uplifting. Vee is gorgeous and you are beautiful. You gave me a great idea about how to help my communicate. She has learned a lot of what she knows through music and song. Like Vee uses her art to express herself, can use music and rhymes. The developmental pediatrician told us her center offers free music therapy, thanks to a special grant. We'll certainly be taking part. All the best, > Our soon-to-be three year old was officially diagnosed today by the > developmental pediatrician. My husband and I were mentally prepared so > we're doing okay. We're emotionally exhausted, but okay. Now we > wonder what's the best way to tell family and friends? Is there a > brochure or card we can hand out that answers most questions we're > going to encounter? I'm seriously dreading the thought of family > gatherings over the upcoming holidays. We'd love to hear about how > others have told loved ones. > > With appreciation, > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2007 Report Share Posted October 21, 2007 , Thank you so much for sharing your daughter's website. My daughter sometimes works out her feelings in artwork, and she was just thrilled to see Vee's work. I enjoyed it too, of course! Allie was so excited to see Vee's interest in Pokémon. I had to promise her we could look again tomorrow, since it was too close to bedtime to look very long tonight! :-) Thanks again, Sandi ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2007 Report Share Posted October 21, 2007 , Thank you so much for sharing your daughter's website. My daughter sometimes works out her feelings in artwork, and she was just thrilled to see Vee's work. I enjoyed it too, of course! Allie was so excited to see Vee's interest in Pokémon. I had to promise her we could look again tomorrow, since it was too close to bedtime to look very long tonight! :-) Thanks again, Sandi ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2007 Report Share Posted October 21, 2007 Allie is 12. She is in the 6th grade, and loves theater class the best. Turns out she has a wicked ability at improvisation. Allie would hate being a pen pal, because writing is a huge chore - just the physical act of forcing words onto paper, yuck! She would probably love to be email pals, where she could share drawings, and jokes and school experiences. She was very drawn to Vee's work (you will forgive the expression) because she loves cartooning - it's her favorite method of expression. If we could work out a way for the girls to share emails and art, she'd love to take part. How old is Vee? Allie was curious when she saw the labels on the Albums, figuring Vee might not be too different in age. Sandi In a message dated 10/22/2007 12:17:17 A.M. Central Daylight Time, kimemminger@... writes: I'm so glad Allie was excited to see her website. How old is your daughter? I haven't had time to load more of the fun pages - but I keep telling i'm going to work on the butterfly island next.... but just haven't had the time. Defiantly feel free to share her website with your girls. It's become my safe place I know she goes, has fun, learns but at the same time be protected. All the links I've carefully looked at to make sure they don't point to any sites that are inappropriate, but if you find something I've missed please let me know. You know something I thought of awhile back once she got her diagnosis was, would any of you be interested in starting a pen pal program for our girls? I know my daughter has such a hard time making friends at school due to her social issues - and often complains she doesn't have friends. So I thought it might be nice for her to receive letters from other girls around the country with autism. And for the girls who can't write - maybe can draw pictures for them.... to make them feel special as well. It's a thought... and not sure how we could do it.... but if you guys are interested, let me know. I'm sure we could figure out a way. Hugs to all ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
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