Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 In a message dated 1/9/01 8:26:14 PM Eastern Standard Time, okieleah@... writes: << gail, it didnt take us long to get in to see dr.capone. of course i sounded like a desperate mom about to throw in the towel along with the nine year old child...lololl >> LOL Leah!!!!! I remember that!!!!!! LOL Wasn't that right after you moved to the new neighborhood and Ashton ran away and you were running the streets with no bra on, like a crazy woman, introducing yourself to everyone? LOL And Ashton had come home with juice and donuts? LOL I'll always have a vivid picture of that in my mind to get me through tough days! LOL Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 In a message dated 1/9/01 8:39:47 PM Eastern Standard Time, jmedlen@... writes: << GAil: He tends to work on getting our kids in quicker, so make sure if you call, that you mention ds/autism. OK? If you decide to call, let me know; I'll send a note ahead of time alerting him. We were scheduled in less than 2 months I believe. I was persistent and from otu of town. It always helps to fly. j >> Thanks Joan. I will call his advocate tomorrow and see if we can make it happen. I think at this point with everything going on with school, it should be done anyway. I will take you up on alerting him. That's nice of you, thanks. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 GAil: He tends to work on getting our kids in quicker, so make sure if you call, that you mention ds/autism. OK? If you decide to call, let me know; I'll send a note ahead of time alerting him. We were scheduled in less than 2 months I believe. I was persistent and from otu of town. It always helps to fly. j At 06:49 PM 1/9/01 EST, you wrote: >Donna, >How long does it take to get in to see Dr. Capone? I think getting another >eval done on Seth would be a good idea. Lord knows in this redneck area >there is no place to get one done! LOL We had the last one done in >Rochester at the autism institute there. I don't know how good they are >though. Can you send some info on KKI? >Thanks, >Gail > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 In a message dated 1/9/01 11:07:45 PM Eastern Standard Time, jmedlen@... writes: << What she didn't tell you is that she shared all that in the ds/autism discussion group where we had Dr. Capone as our guest.....I'm sure he remembered her. j >> LOL Joan!!!!!!!! I don't think I will mention to the good doctor that I know Leah!!!!! LOL Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 In a message dated 1/9/01 11:30:00 PM Eastern Standard Time, okieleah@... writes: << yes gail, that was the time and don't forget i stepped in dog poop and it squished between my toes because i had on NO SHOES..HEHHEHEHE >> LOL Oh yea Leah!!! I did forget that minor detail LOL LOL LOL Did you ever find out whose house it was she helped herself to the donuts and juice? Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 gail, it didnt take us long to get in to see dr.capone. of course i sounded like a desperate mom about to throw in the towel along with the nine year old child...lololl you can get info at kennedykrieger.org or email dr. capone at capone@... >From: smilinggail@... >Reply-egroups >egroups >Subject: KKI >Date: Tue, 9 Jan 2001 18:49:15 EST > >Donna, >How long does it take to get in to see Dr. Capone? I think getting another >eval done on Seth would be a good idea. Lord knows in this redneck area >there is no place to get one done! LOL We had the last one done in >Rochester at the autism institute there. I don't know how good they are >though. Can you send some info on KKI? >Thanks, >Gail _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 At 09:32 PM 1/9/01 EST, you wrote: >LOL Leah!!!!! I remember that!!!!!! LOL Wasn't that right after you moved >to the new neighborhood and Ashton ran away and you were running the streets >with no bra on, like a crazy woman, introducing yourself to everyone? LOL >And Ashton had come home with juice and donuts? LOL I'll always have a >vivid picture of that in my mind to get me through tough days! LOL What she didn't tell you is that she shared all that in the ds/autism discussion group where we had Dr. Capone as our guest.....I'm sure he remembered her. j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 Gail: I " m happy to take some of the burden away. When you get ready to call, send me a note but also include your last name! I " ll forget.... Thanks. j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 yes gail, that was the time and don't forget i stepped in dog poop and it squished between my toes because i had on NO SHOES..HEHHEHEHE >From: smilinggail@... >Reply-egroups >egroups >Subject: Re: KKI >Date: Tue, 9 Jan 2001 21:32:14 EST > >In a message dated 1/9/01 8:26:14 PM Eastern Standard Time, >okieleah@... writes: > ><< gail, > it didnt take us long to get in to see dr.capone. of course i sounded >like a > desperate mom about to throw in the towel along with the nine year old > child...lololl >> > >LOL Leah!!!!! I remember that!!!!!! LOL Wasn't that right after you >moved >to the new neighborhood and Ashton ran away and you were running the >streets >with no bra on, like a crazy woman, introducing yourself to everyone? LOL >And Ashton had come home with juice and donuts? LOL I'll always have a >vivid picture of that in my mind to get me through tough days! LOL >Gail _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 At 12:26 AM 1/10/01 EST, you wrote: >LOL Joan!!!!!!!! I don't think I will mention to the good doctor that I >know Leah!!!!! LOL >Gail Oh go ahead! He'll smile. Just tell him you're one of " us. " He's seen MUCH worse than Leah! She's a sweetheart--full of love and intensity to make life better. She's the best kind to be around. j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 In a message dated 1/10/01 7:00:17 AM Eastern Standard Time, okieleah@... writes: << thanks alot gail....i think i shall keep my stories to myself from now on....youll only get the boring details.....llolol >> Don't you dare Leah!!!! LOL I was just kidding I hope you know. LOL You don't know how many times Seth has done something scary or gross, and I get through it because I know it's not the worst thing in the world to go through because................ you have gone through worse!!! LOL Reading everyone's post does help get you through things. Just knowing you're not alone helps. LOL I really admire you for going through that with a sense of humor. I really don't think humor would have gotten me through that one. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 In a message dated 1/9/01 7:42:36 PM Eastern Standard Time, smilinggail@... writes: << Donna, How long does it take to get in to see Dr. Capone? I think getting another eval done on Seth would be a good idea. Lord knows in this redneck area there is no place to get one done! LOL We had the last one done in Rochester at the autism institute there. I don't know how good they are though. Can you send some info on KKI? Thanks, Gail >> Hi Gail, Well, our first visit took me four months to get. After that, it seemed like no time (I can't remember actually, but not near as long). As I said, we had to pay out of pocket and it's not cheap, although I did fight the school district for one visit and got more than half the bill paid by them. So, if you do decide to plan a visit there, let me know in advance. There's some things I should tell you in terms of what they schedule you for. You have to speak out for instance, about whether or not it is necessary to see some people. Our first visit, they had scheduled us to see a social worker and a nutritionist. A total waste of our money. Nice people, but it wasn't what we needed. The nutritionist was wonderful. She spoke to us for 10 minutes, and then said... " You know what? You guys don't need to see me...I'm not going to bill you " . So we got off the hook for that one. Anyway, I think their site is http://www.kennedykrieger.org/ If that's not right, I'll try and find it. Good luck dear, Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 In a message dated 1/9/01 8:26:15 PM Eastern Standard Time, okieleah@... writes: << gail, it didnt take us long to get in to see dr.capone. of course i sounded like a desperate mom about to throw in the towel along with the nine year old child...lololl you can get info at kennedykrieger.org or email dr. capone at capone@... >> LOL Leah. Yep. Sounding desperate helps get you in quicker. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 In a message dated 1/9/01 9:45:07 PM Eastern Standard Time, smilinggail@... writes: << Thanks Joan. I will call his advocate tomorrow and see if we can make it happen. I think at this point with everything going on with school, it should be done anyway. I will take you up on alerting him. That's nice of you, thanks. >> Gail, really helped us with the school thing. We were at a MAJOR snag in her education then (she was 2 at onset of autism) and she was not receiving ANY therapies at all, because essentially, she wouldn't let anyone but me near her. I wanted to switch my services to home-based and have full control over how Maddie got her early intervention program, but they weren't budging. Once I went to KKI, and came back with a report from saying that Maddie NEEDED an at-home program with gentle teaching AND working with Mom, I got it. No problem. I even requested a certain teacher who was not a home-based teacher, because wrote that Maddie needs consistency. Donna was always Maddie's teacher in the classroom, so that was my ace card. He also was beneficial in helping me get Maddie into Melmark. It helps to throw that s Hopkins name around when you are trying to move mountains. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 In a message dated 1/10/01 10:18:10 AM Eastern Standard Time, duffey48@... writes: << http://www.kennedykrieger.org/ >> Thanks Donna, it works! I called his advocate today to see where there is money available to pay for it. She is also working on funding for a vail bed. Hope that comes through soon. I have locked him in his room some nights, but am nervous about that. If I don't lock him in, he roams the house all night. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 Gosh Donna, I know I have to get there now! LOL Maybe that would help with keeping him in preschool another year. He doesn't have to start school until 2002, so that would be a whole year with no services. Maybe if I got a letter from him stating what Seth needs, they will see that it would be cheaper for them to keep him in preschool than to provide all those services. Thanks! Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 yes i am sure he remembered me!!!!! i am such a loving touching person:-) or dr.capone thought to himself " ibetter help this psycho mom or she will haunt me forever " lolol probably closer to the truth.....doesn't matter how we get there, point is ashton is doing good and i havent stepped in poop lately.....heheheh >From: " Joan E. Guthrie Medlen " <jmedlen@...> >Reply-egroups >egroups >Subject: Re: KKI >Date: Tue, 09 Jan 2001 18:41:54 -0800 > >At 09:32 PM 1/9/01 EST, you wrote: > >LOL Leah!!!!! I remember that!!!!!! LOL Wasn't that right after you >moved > >to the new neighborhood and Ashton ran away and you were running the >streets > >with no bra on, like a crazy woman, introducing yourself to everyone? >LOL > >And Ashton had come home with juice and donuts? LOL I'll always have a > >vivid picture of that in my mind to get me through tough days! LOL > >What she didn't tell you is that she shared all that in the ds/autism >discussion group where we had Dr. Capone as our guest.....I'm sure he >remembered her. > >j _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 thanks alot gail....i think i shall keep my stories to myself from now on....youll only get the boring details.....llolol >From: " Joan E. Guthrie Medlen " <jmedlen@...> >Reply-egroups >egroups >Subject: Re: KKI >Date: Tue, 09 Jan 2001 22:21:51 -0800 > >At 12:26 AM 1/10/01 EST, you wrote: > >LOL Joan!!!!!!!! I don't think I will mention to the good doctor that I > >know Leah!!!!! LOL > >Gail > >Oh go ahead! He'll smile. Just tell him you're one of " us. " He's seen MUCH >worse than Leah! She's a sweetheart--full of love and intensity to make >life better. She's the best kind to be around. > >j _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 In a message dated 1/10/01 12:28:37 PM Eastern Standard Time, brink_00@... writes: << What's KKI? >> , It's the Kennedy Krieger Institute and it is down at s Hopkins Hospital in land. Dr. Capone, who dx'd Maddie, Andy, and Ashton with autistic spectrum disorder, runs the Down Syndrome clinic down there. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 At 06:58 AM 1/10/01 -0500, you wrote: >there, point is ashton is doing good and i havent stepped in poop >lately.....heheheh So we can assume, Gail, that an appropriate evaluation will prevent you from stepping in questionable brown piles in your future. Leah.......he'd help you regardless. I don't think he saw you as a psycho, but if you want to BE one...well...I won't deprive you either. j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 What's KKI? >From: smilinggail@... >Reply-egroups >egroups >Subject: Re: KKI >Date: Wed, 10 Jan 2001 11:14:53 EST > >Gosh Donna, I know I have to get there now! LOL Maybe that would help >with >keeping him in preschool another year. He doesn't have to start school >until >2002, so that would be a whole year with no services. Maybe if I got a >letter from him stating what Seth needs, they will see that it would be >cheaper for them to keep him in preschool than to provide all those >services. >Thanks! >Gail _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 In a message dated 1/10/01 3:42:17 PM Eastern Standard Time, okieleah@... writes: << lolol gail, i know your just teasing.....that was one of the hardest days in my life...she tested the powers in me to the ultimate level.....but to come home and see her sitting there eating a choc donut and drinking gatorade like NOTHING HAD EVER HAPPENED.....lolol when she is older i will tell her in full detail about the day she almost got put up for adoption.....lolo take care leah who of course will continue to share.....lets just hope its not concerning brown piles >> As funny as that was Leah, I know you thank God she was sitting there eating stolen food! Don't even want to imagine the other possible endings. There is always SOMETHING to be thankful for, even when they do the ultimate, last rope kinds of things. LOL Gail-who is still laughing...sorry LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 lolol gail, i know your just teasing.....that was one of the hardest days in my life...she tested the powers in me to the ultimate level.....but to come home and see her sitting there eating a choc donut and drinking gatorade like NOTHING HAD EVER HAPPENED.....lolol when she is older i will tell her in full detail about the day she almost got put up for adoption.....lolo take care leah who of course will continue to share.....lets just hope its not concerning brown piles >From: smilinggail@... >Reply-egroups >egroups >Subject: Re: KKI >Date: Wed, 10 Jan 2001 10:06:40 EST > >In a message dated 1/10/01 7:00:17 AM Eastern Standard Time, >okieleah@... writes: > ><< thanks alot gail....i think i shall keep my stories to myself from now > on....youll only get the boring details.....llolol > >> >Don't you dare Leah!!!! LOL I was just kidding I hope you know. LOL You >don't know how many times Seth has done something scary or gross, and I get >through it because I know it's not the worst thing in the world to go >through >because................ you have gone through worse!!! LOL Reading >everyone's post does help get you through things. Just knowing you're not >alone helps. LOL I really admire you for going through that with a sense >of humor. I really don't think humor would have gotten me through that >one. >Gail _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 oh okay, I think I understand it. >From: duffey48@... >Reply-egroups >egroups >Subject: Re: KKI >Date: Wed, 10 Jan 2001 14:04:39 EST > >In a message dated 1/10/01 12:28:37 PM Eastern Standard Time, >brink_00@... writes: > ><< What's KKI? > > >> > >, > It's the Kennedy Krieger Institute and it is down at s Hopkins >Hospital >in land. Dr. Capone, who dx'd Maddie, Andy, and Ashton with >autistic spectrum disorder, runs the Down Syndrome clinic down there. >Donna _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Well, we finally did it......we have an appt. to see Dr. Capone on April 22nd! I contacted my sources at MHMR and they refused to provide me with any funding for this trip, although the medical expenses will be covered by HMO.....Medicaid is not state transferable. I am soooooo mad at my supports at MHMR I can scream! I told them the family was in a crisis situation, and that they must " support me " in this.....we've been to countless doctors in TX and no one has been able to help ! Told them if push comes to shove, we may have to place in a group home ( I didn't mean this) where it will cost them MORE money to maintain him......about 4,000 per month just for the placement, not the actual CARE!!! Know what they told me? They said, " well, that's why we give respite, for the family to have time together without the child " ......they said if it came to that, then I would have to place him, there's nothing they can do! Can you believe that? This group is supposed to help KEEP the child in their " natural environment " and when the parents are trying to do just that, they come up with excuses from their books, saying this and that is not covered, and would rather pay for in a group home, than pay the family to get help for the child!!!!!!!! This is ludicrous and I won't take this sitting down. I realize these caseworkers are just " puppets " , reciting from their rule books and can't change things. I will get on the horn and call Austin headquarters and see what I can do to get something changed......this is nuts. Thanks for the vent! Quote Link to comment Share on other sites More sharing options...
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