Guest guest Posted August 29, 2011 Report Share Posted August 29, 2011 Hi Jayne I know many other of our " sisters " have posted regarding your experiences, and I just wanted to add my little coping strategy that I use when I feel the same way as you. When I am feeling sad because my son is unable to participate in an activity that I thought would be great or fun for him, I go into my room, close the door, and meditate or visualize. I imagine that I am in a beautiful garden (like the Morikami Gardens in Boca) with my son. It is a glorious day, and we are sitting on a bench enjoying the beauty that surrounds us. He is well and healthy. He tells me everything that he is thinking. We have a wonderful experience in our garden-talking and sharing what we are unable to do in the real world. I know that some people may think that this experience would make me more sad, since it isn't real, but it doesn't! It makes me feel much better actually. Maybe part of me allows myself to believe it is real, and that Blake is really in the garden with me in his mind as well.Whatever it really is, the meditation helps me to connect with my son, which is what I find to be the biggest sadness about having a child who can't communicate at a level other than to express his wants and needs. > > Hi Listmates: > > Sitting here in a hotel room feeling sorry for myself. I came up to visit Miki at Carlton Palms and based on a GREAT July report (no aggression, SIB or restraints) and her 13th Birthday I Came up here to " kidnap " her to a hotel room as practice for coming home for a visit. I had visions of an evening together doing girly things like nail polish. It was to be our first night together since her move up here. After dinner I went online to find a movie to take her to. She moved to bite me. I asked her what she wanted and she wanted to go back to Carlton Palms. I brought her back. I know I can't take it personally, she NEEDS her routine and the visit disrupted it. I just HATE Autism, it has taken all the dreams of motherhood I had away. She probably will never marry, have kids of her own. Sorry for venting...I'm just sad... > > Jayne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2011 Report Share Posted August 29, 2011 Jayne,It is nice to have someone write in whom I can relate to. I know your frustration, disappointment, and just plain weariness!!! Our son is severely autistic and in a small home also. There are 3 other boys living with him. He is 11years old. He does not speak, he just got potty trained (almost) and does not really play with anything.He has no interest. He has 2 sisters the same age. He is a triplet. Every time the girls see him they think he will be a little better. He comes home for short visits but can't stay overnight because he may run away. Your daughter may improve through time. I never thought our son would get potty trained. Ask the place he is residing what you should do if she bites you and research it also. I try to work through the visits because I am fearful that Isaac will not remember us or want to be with us if we see him to infrequently. I know it is extremely difficult. Just be the sweetest Mommy you can be when you see her. Do a little snuggling. If she is like my boy, she is not 13 mentally. She may still think like a very young child. Also, the better your visits, the better you will feel. Sometimes we practice for a visit. It works pretty well!God Bless,NeicySent from my iPad Jayne, I can only imagine the depth of your pain and despair. Try to hang in there. I will pray for you both.Subject: Hating this diseaseTo: deniseslist Date: Saturday, August 27, 2011, 8:43 PM Hi Listmates: Sitting here in a hotel room feeling sorry for myself. I came up to visit Miki at Carlton Palms and based on a GREAT July report (no aggression, SIB or restraints) and her 13th Birthday I Came up here to "kidnap" her to a hotel room as practice for coming home for a visit. I had visions of an evening together doing girly things like nail polish. It was to be our first night together since her move up here. After dinner I went online to find a movie to take her to. She moved to bite me. I asked her what she wanted and she wanted to go back to Carlton Palms. I brought her back. I know I can't take it personally, she NEEDS her routine and the visit disrupted it. I just HATE Autism, it has taken all the dreams of motherhood I had away. She probably will never marry, have kids of her own. Sorry for venting...I'm just sad... Jayne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2011 Report Share Posted August 29, 2011 I admire you for being able to meditate/visualize a great setting for you and Blake. I am unable to do so because I would fall into a deep depression. I have enough of members of my family saying coulda, wouldas, wished for etc for me that totally bums me out when I think how amazing my child is already wish they would see and come to think of it - I won't have to worry about her stealing my money, car, getting piercings/tatoos etc either. I am blessed with what I have even if I do wish I could get more assistance - but that's another story with the PCA problems. Not one of us would have ever wished for this diagnosis - no matter what the state of florida seems to believe.To: sList Sent: Monday, August 29, 2011 10:24 AMSubject: Re: Hating this disease Hi Jayne I know many other of our "sisters" have posted regarding your experiences, and I just wanted to add my little coping strategy that I use when I feel the same way as you. When I am feeling sad because my son is unable to participate in an activity that I thought would be great or fun for him, I go into my room, close the door, and meditate or visualize. I imagine that I am in a beautiful garden (like the Morikami Gardens in Boca) with my son. It is a glorious day, and we are sitting on a bench enjoying the beauty that surrounds us. He is well and healthy. He tells me everything that he is thinking. We have a wonderful experience in our garden-talking and sharing what we are unable to do in the real world. I know that some people may think that this experience would make me more sad, since it isn't real, but it doesn't! It makes me feel much better actually. Maybe part of me allows myself to believe it is real, and that Blake is really in the garden with me in his mind as well.Whatever it really is, the meditation helps me to connect with my son, which is what I find to be the biggest sadness about having a child who can't communicate at a level other than to express his wants and needs. > > Hi Listmates: > > Sitting here in a hotel room feeling sorry for myself. I came up to visit Miki at Carlton Palms and based on a GREAT July report (no aggression, SIB or restraints) and her 13th Birthday I Came up here to "kidnap" her to a hotel room as practice for coming home for a visit. I had visions of an evening together doing girly things like nail polish. It was to be our first night together since her move up here. After dinner I went online to find a movie to take her to. She moved to bite me. I asked her what she wanted and she wanted to go back to Carlton Palms. I brought her back. I know I can't take it personally, she NEEDS her routine and the visit disrupted it. I just HATE Autism, it has taken all the dreams of motherhood I had away. She probably will never marry, have kids of her own. Sorry for venting...I'm just sad... > > Jayne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2011 Report Share Posted August 29, 2011 Dear Jayne,I feel your pain. Please know that you are not alone and that you are and have been an exceptual mother to Miki.To: sList Sent: Sunday, August 28, 2011 10:11 AMSubject: Re: Hating this disease Hi Jayne, Hope the love and support from all the listmates will make you feel better. I wonder if the group home could help you help prepare her for your visits. Make a social story for her and go over a schedule of the things that you two will do together. You could have the schedule in hand and cross out items as you complete them and remind after after each activity that when you are all done, she will go back. Just a thought...Ida > > Hi Listmates: > > Sitting here in a hotel room feeling sorry for myself. I came up to visit Miki at Carlton Palms and based on a GREAT July report (no aggression, SIB or restraints) and her 13th Birthday I Came up here to "kidnap" her to a hotel room as practice for coming home for a visit. I had visions of an evening together doing girly things like nail polish. It was to be our first night together since her move up here. After dinner I went online to find a movie to take her to. She moved to bite me. I asked her what she wanted and she wanted to go back to Carlton Palms. I brought her back. I know I can't take it personally, she NEEDS her routine and the visit disrupted it. I just HATE Autism, it has taken all the dreams of motherhood I had away. She probably will never marry, have kids of her own. Sorry for venting...I'm just sad... > > Jayne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2011 Report Share Posted August 29, 2011 Jayne,I know exactly how you feel. All of your feelings and disappointments in what you thought motherhood would be is something I struggle with all of the time. Many list mates have posted some excellent advice. For me, I cope by simply lowering my expectations. For example, if I have something fun planned I only plan it for a very short period of time and know that we are probably not going to be able to do it all. This allows time for my child to adapt and leave if necessary. And then if my daughter is doing well, then I add more fun stuff. In other words, keep it simple and if Miki is having a good time and doing well you can try to add a little more. But always keep in mind that everything you want to do will probably not happen. Every now and then our kids surprise us and do more than what we thought they would do, and those are the BEST moments and the ones I try to remember when things get bad. Keep expectations low and savor all the good ones for all their worth. That's my motto.Hope things turn around soon for you. Miki could not have asked for a better mom.AMSent from my iPad I admire you for being able to meditate/visualize a great setting for you and Blake. I am unable to do so because I would fall into a deep depression. I have enough of members of my family saying coulda, wouldas, wished for etc for me that totally bums me out when I think how amazing my child is already wish they would see and come to think of it - I won't have to worry about her stealing my money, car, getting piercings/tatoos etc either. I am blessed with what I have even if I do wish I could get more assistance - but that's another story with the PCA problems. Not one of us would have ever wished for this diagnosis - no matter what the state of florida seems to believe.To: sList Sent: Monday, August 29, 2011 10:24 AMSubject: Re: Hating this disease Hi Jayne I know many other of our "sisters" have posted regarding your experiences, and I just wanted to add my little coping strategy that I use when I feel the same way as you. When I am feeling sad because my son is unable to participate in an activity that I thought would be great or fun for him, I go into my room, close the door, and meditate or visualize. I imagine that I am in a beautiful garden (like the Morikami Gardens in Boca) with my son. It is a glorious day, and we are sitting on a bench enjoying the beauty that surrounds us. He is well and healthy. He tells me everything that he is thinking. We have a wonderful experience in our garden-talking and sharing what we are unable to do in the real world. I know that some people may think that this experience would make me more sad, since it isn't real, but it doesn't! It makes me feel much better actually. Maybe part of me allows myself to believe it is real, and that Blake is really in the garden with me in his mind as well.Whatever it really is, the meditation helps me to connect with my son, which is what I find to be the biggest sadness about having a child who can't communicate at a level other than to express his wants and needs. > > Hi Listmates: > > Sitting here in a hotel room feeling sorry for myself. I came up to visit Miki at Carlton Palms and based on a GREAT July report (no aggression, SIB or restraints) and her 13th Birthday I Came up here to "kidnap" her to a hotel room as practice for coming home for a visit. I had visions of an evening together doing girly things like nail polish. It was to be our first night together since her move up here. After dinner I went online to find a movie to take her to. She moved to bite me. I asked her what she wanted and she wanted to go back to Carlton Palms. I brought her back. I know I can't take it personally, she NEEDS her routine and the visit disrupted it. I just HATE Autism, it has taken all the dreams of motherhood I had away. She probably will never marry, have kids of her own. Sorry for venting...I'm just sad... > > Jayne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2011 Report Share Posted August 29, 2011 Jayne, Try to find comfort in the fact that there is a place where Mikki can live that is structued in a way that reduces her anxiety, her SIBs and aggression and allows her (and you) to be safe. It is hard as a Mom to accept that you can not fix everything for your child. She is at a very tough age..adolescence is hard on everyone and combining it with autism creates situations and scenarios that none of us would have ever imagined possible. Motherhood with autism is nothing like anyone expected. I think trying skype will at least keep you in touch with her, and visiting her on site may help if they are willing to integrate you into her routine and life during her visit. Moms who have children with autism are some of the most loving and caring people put on this earth. You have been a great mother to Mikki and have sacrificed to make sure she is safe and in a place where she can grow. Those of us who walk this walk know.... To: "sList " <sList >Sent: Mon, August 29, 2011 2:58:03 PMSubject: Re: Re: Hating this disease Jayne, I know exactly how you feel. All of your feelings and disappointments in what you thought motherhood would be is something I struggle with all of the time. Many list mates have posted some excellent advice. For me, I cope by simply lowering my expectations. For example, if I have something fun planned I only plan it for a very short period of time and know that we are probably not going to be able to do it all. This allows time for my child to adapt and leave if necessary. And then if my daughter is doing well, then I add more fun stuff. In other words, keep it simple and if Miki is having a good time and doing well you can try to add a little more. But always keep in mind that everything you want to do will probably not happen. Every now and then our kids surprise us and do more than what we thought they would do, and those are the BEST moments and the ones I try to remember when things get bad. Keep expectations low and savor all the good ones for all their worth. That's my motto. Hope things turn around soon for you. Miki could not have asked for a better mom. AM Sent from my iPad I admire you for being able to meditate/visualize a great setting for you and Blake. I am unable to do so because I would fall into a deep depression. I have enough of members of my family saying coulda, wouldas, wished for etc for me that totally bums me out when I think how amazing my child is already wish they would see and come to think of it - I won't have to worry about her stealing my money, car, getting piercings/tatoos etc either. I am blessed with what I have even if I do wish I could get more assistance - but that's another story with the PCA problems. Not one of us would have ever wished for this diagnosis - no matter what the state of florida seems to believe. To: sList Sent: Monday, August 29, 2011 10:24 AMSubject: Re: Hating this disease Hi JayneI know many other of our "sisters" have posted regarding your experiences, and I just wanted to add my little coping strategy that I use when I feel the same way as you. When I am feeling sad because my son is unable to participate in an activity that I thought would be great or fun for him, I go into my room, close the door, and meditate or visualize. I imagine that I am in a beautiful garden (like the Morikami Gardens in Boca) with my son. It is a glorious day, and we are sitting on a bench enjoying the beauty that surrounds us. He is well and healthy. He tells me everything that he is thinking. We have a wonderful experience in our garden-talking and sharing what we are unable to do in the real world. I know that some people may think that this experience would make me more sad, since it isn't real, but it doesn't! It makes me feel much better actually. Maybe part of me allows myself to believe it is real, and that Blake is really in the garden with me in his mind as well.Whatever it really is, the meditation helps me to connect with my son, which is what I find to be the biggest sadness about having a child who can't communicate at a level other than to express his wants and needs.>> Hi Listmates:> > Sitting here in a hotel room feeling sorry for myself. I came up to visit Miki at Carlton Palms and based on a GREAT July report (no aggression, SIB or restraints) and her 13th Birthday I Came up here to "kidnap" her to a hotel room as practice for coming home for a visit. I had visions of an evening together doing girly things like nail polish. It was to be our first night together since her move up here. After dinner I went online to find a movie to take her to. She moved to bite me. I asked her what she wanted and she wanted to go back to Carlton Palms. I brought her back. I know I can't take it personally, she NEEDS her routine and the visit disrupted it. I just HATE Autism, it has taken all the dreams of motherhood I had away. She probably will never marry, have kids of her own. Sorry for venting...I'm just sad...> > Jayne> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2011 Report Share Posted August 29, 2011 Yes that's a great idea! What bio medical therapies have been done in this situation? Sorry, just trying to catch up on 's list ...am not in Florida anymore...will look back to original post. Respectfully, Wanda Re: Re: Hating this disease If you can't get up to see her often because it's so far away...ask Carlton Palms to put her on SKYPE and then you can talk to her on a daily basis. She might feel more connected to you. I'm so sad for you too. Especially the bond between a mom and a daughter and all the things we are supposed to do together are lost. I like to think of creative things to do with my son, new and exciting things, but he'd rather do what is routine to him. Boring and mundane to me, but they give him peace. Sometimes he will go with the flow and try something new, but rarely. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2011 Report Share Posted August 29, 2011 I visualize too, sometimes it makes me laugh and sometimes it makes me cry, either way it makes me feel better. When Zander was born I went to the Honda dealership and bought myself the nicest minivan they had on the lot because I had visions of toting kids back and forth from school, baseball practices, and pizza parties. I bought the extended warranty because I wanted to keep it nice so when Zander went off to college he could drive off in my mini van. I still hold onto that vantasy even though part of me knows that it may not happen, the other part of me laughs as Zander drives off into the sunset in his Honda Odyssey (which may or may not have a working DVD player in it by then because Zander is consumed with the idea of taking it apart just to put it back together again) LOL. Re: Hating this disease Hi Jayne I know many other of our "sisters" have posted regarding your experiences, and I just wanted to add my little coping strategy that I use when I feel the same way as you. When I am feeling sad because my son is unable to participate in an activity that I thought would be great or fun for him, I go into my room, close the door, and meditate or visualize. I imagine that I am in a beautiful garden (like the Morikami Gardens in Boca) with my son. It is a glorious day, and we are sitting on a bench enjoying the beauty that surrounds us. He is well and healthy. He tells me everything that he is thinking. We have a wonderful experience in our garden-talking and sharing what we are unable to do in the real world. I know that some people may think that this experience would make me more sad, since it isn't real, but it doesn't! It makes me feel much better actually. Maybe part of me allows myself to believe it is real, and that Blake is really in the garden with me in his mind as well.Whatever it really is, the meditation helps me to connect with my son, which is what I find to be the biggest sadness about having a child who can't communicate at a level other than to express his wants and needs. > > Hi Listmates: > > Sitting here in a hotel room feeling sorry for myself. I came up to visit Miki at Carlton Palms and based on a GREAT July report (no aggression, SIB or restraints) and her 13th Birthday I Came up here to "kidnap" her to a hotel room as practice for coming home for a visit. I had visions of an evening together doing girly things like nail polish. It was to be our first night together since her move up here. After dinner I went online to find a movie to take her to. She moved to bite me. I asked her what she wanted and she wanted to go back to Carlton Palms. I brought her back. I know I can't take it personally, she NEEDS her routine and the visit disrupted it. I just HATE Autism, it has taken all the dreams of motherhood I had away. She probably will never marry, have kids of her own. Sorry for venting...I'm just sad... > > Jayne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2011 Report Share Posted August 29, 2011 Cheryl I revel In Blake's accomplishments, too. He's turned into a decent baker (with assistance) and is now also enjoying making quiche (actually this is a new obsession). The visualization helps me on the other days. Val > >> > >> Hi Listmates: > >>  > >> Sitting here in a hotel room feeling sorry for myself. I came up to visit Miki at Carlton Palms and based on a GREAT July report (no aggression, SIB or restraints) and her 13th Birthday I Came up here to " kidnap " her to a hotel room as practice for coming home for a visit. I had visions of an evening together doing girly things like nail polish. It was to be our first night together since her move up here. After dinner I went online to find a movie to take her to. She moved to bite me. I asked her what she wanted and she wanted to go back to Carlton Palms. I brought her back. I know I can't take it personally, she NEEDS her routine and the visit disrupted it. I just HATE Autism, it has taken all the dreams of motherhood I had away. She probably will never marry, have kids of her own. Sorry for venting...I'm just sad... > >>  > >> Jayne > >> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2011 Report Share Posted August 30, 2011 Jayne, thank you for reaching out for help. My daughter Johanna,9, is nonverbal but her behavior is mostly non-problematic, allowing her to safely live at home and attend a small private school for children with autism. While my challenges aren't as hard as yours, it helps me to focus on the benefits of being a parent of a special child. My daughter has taught me more than anyone else. I have learned (still learning, of course) patience, tolerance, gratitude, faith, and acceptance from being her dad. I can relate to what says about meditation and visualization. I know that on some spiritual level I enjoy a deep communication with Johanna, though there are certainly times in this ordinary reality that she seems to not want to listen to anything I say! I occasionally have dreams where I am speaking with her verbally, and when I wake up I am happy to have had that experience with her, even if it isn't " real " . Who knows what is real, anyway? > > > > Hi Listmates: > > > > Sitting here in a hotel room feeling sorry for myself. I came up to visit Miki at Carlton Palms and based on a GREAT July report (no aggression, SIB or restraints) and her 13th Birthday I Came up here to " kidnap " her to a hotel room as practice for coming home for a visit. I had visions of an evening together doing girly things like nail polish. It was to be our first night together since her move up here. After dinner I went online to find a movie to take her to. She moved to bite me. I asked her what she wanted and she wanted to go back to Carlton Palms. I brought her back. I know I can't take it personally, she NEEDS her routine and the visit disrupted it. I just HATE Autism, it has taken all the dreams of motherhood I had away. She probably will never marry, have kids of her own. Sorry for venting...I'm just sad... > > > > Jayne > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2011 Report Share Posted August 30, 2011 I think using Skype is a great idea, but don't expect much in the beginning as the first time I used it with Blake, I was all excited. He, on the other hand, had a meltdown. Now on the extremely rare occasion when I'm out of town, we use it and he is better but he doesn't get very excited about it as I would hope. We also Skype with my sister. Again I think she gets more out of than Blake LOL. Val > > > Yes that's a great idea! What bio medical therapies have been done in this situation? > > Sorry, just trying to catch up on 's list ...am not in Florida anymore...will look back to original post. > > Respectfully, > Wanda > > > > > > > Re: Re: Hating this disease > > > > > > > If you can't get up to see her often because it's so far away...ask Carlton Palms to put her on SKYPE and then you can talk to her on a daily basis. She might feel more connected to you. > > > In a message dated 8/28/2011 1:09:24 P.M. Eastern Daylight Time, 2monsterz@... writes: > > > I'm so sad for you too. Especially the bond between a mom and a daughter and all the things we are supposed to do together are lost. I like to think of creative things to do with my son, new and exciting things, but he'd rather do what is routine to him. Boring and mundane to me, but they give him peace. Sometimes he will go with the flow and try something new, but rarely. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2011 Report Share Posted August 30, 2011 Jayne Just so you know, Slurpee has aspartame which is an excitotoxin. This can cause a glutamate excitotoxicity reaction in the brain where the neurons misfire one after another and cause apoptosis - this is cell death. Normal people who are chemically sensitive have described glutamate toxicity as having "a train run through your head". If that gives you any idea of what a child with autism would experience - hence your daughter's reaction. It's pretty hard to behave appropriately when something neurological like this is going on. There are also food dyes in this drink which also will cause neurological reactions as well. Children with autism cannot control their bodies or behaviors when they have negative neurological reactions to toxins discombobulating their neurotransmitters . There is a great book by Dr. Blaylock called "The taste that kills". Dr. Amy Yasko also deals with children with autism and excitotoxicity.Her website is http://www.dramyyasko.com/ This way you can learn what foods to avoid for her in the future....and let Carlton Palms know. There is an Alzheimer's drug they are using on children with autism to stop the glutamate reactions (a subset group of kids with autism have this problem) and it seems to be working very well - makes tremendous changes in the kids. The drug is called Namenda and the doctor who is most familiar with this is Dr. Ken Bach in NY. You might have them look into this for your daughter. It might make a world of difference for her behaviors. There are also some supplements which help, but I know doctors are less likely to work with supplements. Here's some more info for you..... Blaylock's article on The Central Role of Excitotoxicity and Autism Spectrum Disorders. http://www.ana-jana.org/reprints/JANAautismarticle6no1.pdf H`i List-mates; Thank you sooooooo much for your responses to my post. I was and am still sad. In a lot of ways I feel I lost my daughter. She is 240 miles away which makes visits difficult. I miss her horribly and can not visit as often as I would like. We were skyping for a while. It took months for them to get that together because of worry of hacking into medical records. They finally got a computer solely for that. It was so neat to Skype the Hanukkah lighting of candles and prayers to Miki and the other Jewish Kids there. The problem is I now have a second job which falls on their skype schedule and haven't been able. I guess I need to have a talk to them about rearranging the schedule. The idea of a social story and schedule was great. I have to bring my PECs ring of pictures next time. Sunday I left there an hour early as Miki started to tantrum in the car. I got her a Slurpee and she got a head ache from drinking it too fast and started banging her head. She also just put her head down and covered her eyes with her hands and pressed...which was a HUGE improvement of coping skills. I called them and it took 3 aides to get her out of my car at the facility. Not how I wanted to end the visit. I know I need to adjust my expectations. that is just easier said than done. Again thank you all for the support...if it weren't for all this crap I wouldn't have met all of you...and for that I am grateful. Jayne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2011 Report Share Posted August 30, 2011 Regarding the "slurpee incident": Is it not possible that Jayne's daughter just had a "Brain Freeze"? Every once in a while kids on the spectrum have typical reactions too. To Jayne and all loved ones of people navigating the world of Autism, I have such empathy for you, especially when you rarely if ever get positive feedback directly from the person you love. Please take comfort in knowing that your definition of "happy" and his or her definition is quite different. Sometimes we have to "let it be" (to steal from Lennon and McCartney) and know we are doing as well as we can.Love to all of you, To: sList Sent: Tuesday, August 30, 2011 1:34 PMSubject: Re: Hating this disease Jayne Just so you know, Slurpee has aspartame which is an excitotoxin. This can cause a glutamate excitotoxicity reaction in the brain where the neurons misfire one after another and cause apoptosis - this is cell death. Normal people who are chemically sensitive have described glutamate toxicity as having "a train run through your head". If that gives you any idea of what a child with autism would experience - hence your daughter's reaction. It's pretty hard to behave appropriately when something neurological like this is going on. There are also food dyes in this drink which also will cause neurological reactions as well. Children with autism cannot control their bodies or behaviors when they have negative neurological reactions to toxins discombobulating their neurotransmitters . There is a great book by Dr. Blaylock called "The taste that kills". Dr. Amy Yasko also deals with children with autism and excitotoxicity.Her website is http://www.dramyyasko.com/ This way you can learn what foods to avoid for her in the future....and let Carlton Palms know. There is an Alzheimer's drug they are using on children with autism to stop the glutamate reactions (a subset group of kids with autism have this problem) and it seems to be working very well - makes tremendous changes in the kids. The drug is called Namenda and the doctor who is most familiar with this is Dr. Ken Bach in NY. You might have them look into this for your daughter. It might make a world of difference for her behaviors. There are also some supplements which help, but I know doctors are less likely to work with supplements. Here's some more info for you..... Blaylock's article on The Central Role of Excitotoxicity and Autism Spectrum Disorders. http://www.ana-jana.org/reprints/JANAautismarticle6no1.pdf H`i List-mates; Thank you sooooooo much for your responses to my post. I was and am still sad. In a lot of ways I feel I lost my daughter. She is 240 miles away which makes visits difficult. I miss her horribly and can not visit as often as I would like. We were skyping for a while. It took months for them to get that together because of worry of hacking into medical records. They finally got a computer solely for that. It was so neat to Skype the Hanukkah lighting of candles and prayers to Miki and the other Jewish Kids there. The problem is I now have a second job which falls on their skype schedule and haven't been able. I guess I need to have a talk to them about rearranging the schedule. The idea of a social story and schedule was great. I have to bring my PECs ring of pictures next time. Sunday I left there an hour early as Miki started to tantrum in the car. I got her a Slurpee and she got a head ache from drinking it too fast and started banging her head. She also just put her head down and covered her eyes with her hands and pressed...which was a HUGE improvement of coping skills. I called them and it took 3 aides to get her out of my car at the facility. Not how I wanted to end the visit. I know I need to adjust my expectations. that is just easier said than done. Again thank you all for the support...if it weren't for all this crap I wouldn't have met all of you...and for that I am grateful. Jayne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2011 Report Share Posted August 30, 2011 Perhaps it will be his new business? I would buy one - I love quiches.To: sList Sent: Monday, August 29, 2011 11:55 PMSubject: Re: Hating this disease Cheryl I revel In Blake's accomplishments, too. He's turned into a decent baker (with assistance) and is now also enjoying making quiche (actually this is a new obsession). The visualization helps me on the other days. Val > >> > >> Hi Listmates: > >>  > >> Sitting here in a hotel room feeling sorry for myself. I came up to visit Miki at Carlton Palms and based on a GREAT July report (no aggression, SIB or restraints) and her 13th Birthday I Came up here to "kidnap" her to a hotel room as practice for coming home for a visit. I had visions of an evening together doing girly things like nail polish. It was to be our first night together since her move up here. After dinner I went online to find a movie to take her to. She moved to bite me. I asked her what she wanted and she wanted to go back to Carlton Palms. I brought her back. I know I can't take it personally, she NEEDS her routine and the visit disrupted it. I just HATE Autism, it has taken all the dreams of motherhood I had away. She probably will never marry, have kids of her own. Sorry for venting...I'm just sad... > >>  > >> Jayne > >> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2011 Report Share Posted August 30, 2011 I must agree that he is becoming a good chief . His food looks good.Imagine Blakes FIne Dining Perhaps it will be his new business? I would buy one - I love quiches.To: sList Sent: Monday, August 29, 2011 11:55 PMSubject: Re: Hating this disease Cheryl I revel In Blake's accomplishments, too. He's turned into a decent baker (with assistance) and is now also enjoying making quiche (actually this is a new obsession). The visualization helps me on the other days. Val > >> > >> Hi Listmates: > >>  > >> Sitting here in a hotel room feeling sorry for myself. I came up to visit Miki at Carlton Palms and based on a GREAT July report (no aggression, SIB or restraints) and her 13th Birthday I Came up here to "kidnap" her to a hotel room as practice for coming home for a visit. I had visions of an evening together doing girly things like nail polish. It was to be our first night together since her move up here. After dinner I went online to find a movie to take her to. She moved to bite me. I asked her what she wanted and she wanted to go back to Carlton Palms. I brought her back. I know I can't take it personally, she NEEDS her routine and the visit disrupted it. I just HATE Autism, it has taken all the dreams of motherhood I had away. She probably will never marry, have kids of her own. Sorry for venting...I'm just sad... > >>  > >> Jayne > >> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2011 Report Share Posted August 31, 2011 I remember slurpee brain freezes - owwwwwwhhhhhh. My daughter has gotten them sometimes when she gets ice cream from coldstone. I'm not sure if its the excess sugar or the cold but I get her to drink some water right away and she still wants to eat the ice cream - go figure.To: "sList " <sList >Sent: Tuesday, August 30, 2011 2:05 PMSubject: Re: Hating this disease Regarding the "slurpee incident": Is it not possible that Jayne's daughter just had a "Brain Freeze"? Every once in a while kids on the spectrum have typical reactions too. To Jayne and all loved ones of people navigating the world of Autism, I have such empathy for you, especially when you rarely if ever get positive feedback directly from the person you love. Please take comfort in knowing that your definition of "happy" and his or her definition is quite different. Sometimes we have to "let it be" (to steal from Lennon and McCartney) and know we are doing as well as we can.Love to all of you, To: sList Sent: Tuesday, August 30, 2011 1:34 PMSubject: Re: Hating this disease Jayne Just so you know, Slurpee has aspartame which is an excitotoxin. This can cause a glutamate excitotoxicity reaction in the brain where the neurons misfire one after another and cause apoptosis - this is cell death. Normal people who are chemically sensitive have described glutamate toxicity as having "a train run through your head". If that gives you any idea of what a child with autism would experience - hence your daughter's reaction. It's pretty hard to behave appropriately when something neurological like this is going on. There are also food dyes in this drink which also will cause neurological reactions as well. Children with autism cannot control their bodies or behaviors when they have negative neurological reactions to toxins discombobulating their neurotransmitters . There is a great book by Dr. Blaylock called "The taste that kills". Dr. Amy Yasko also deals with children with autism and excitotoxicity.Her website is http://www.dramyyasko.com/ This way you can learn what foods to avoid for her in the future....and let Carlton Palms know. There is an Alzheimer's drug they are using on children with autism to stop the glutamate reactions (a subset group of kids with autism have this problem) and it seems to be working very well - makes tremendous changes in the kids. The drug is called Namenda and the doctor who is most familiar with this is Dr. Ken Bach in NY. You might have them look into this for your daughter. It might make a world of difference for her behaviors. There are also some supplements which help, but I know doctors are less likely to work with supplements. Here's some more info for you..... Blaylock's article on The Central Role of Excitotoxicity and Autism Spectrum Disorders. http://www.ana-jana.org/reprints/JANAautismarticle6no1.pdf H`i List-mates; Thank you sooooooo much for your responses to my post. I was and am still sad. In a lot of ways I feel I lost my daughter. She is 240 miles away which makes visits difficult. I miss her horribly and can not visit as often as I would like. We were skyping for a while. It took months for them to get that together because of worry of hacking into medical records. They finally got a computer solely for that. It was so neat to Skype the Hanukkah lighting of candles and prayers to Miki and the other Jewish Kids there. The problem is I now have a second job which falls on their skype schedule and haven't been able. I guess I need to have a talk to them about rearranging the schedule. The idea of a social story and schedule was great. I have to bring my PECs ring of pictures next time. Sunday I left there an hour early as Miki started to tantrum in the car. I got her a Slurpee and she got a head ache from drinking it too fast and started banging her head. She also just put her head down and covered her eyes with her hands and pressed...which was a HUGE improvement of coping skills. I called them and it took 3 aides to get her out of my car at the facility. Not how I wanted to end the visit. I know I need to adjust my expectations. that is just easier said than done. Again thank you all for the support...if it weren't for all this crap I wouldn't have met all of you...and for that I am grateful. Jayne Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.