Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 Sara, I am glad that the testing is over for now. It is a feeling of relief to have the answer, but I know the feeling of looking for solutions. Mikey sounds like he will make great improvements in the next few years. Jacquie H > Sorry if you get this twice, Yahoo is being funky to me tonight... > > We saw Amigo & Bayda today...Actually just Bayda...Mikey's officially > autistic. > > They do not think he's retarded, although he tested that way; they think > that was purely because of the language issues - which they rated as severe; > our ST rated them moderate, but I think their test was more accurate. He > said we won't be able to get an accurate idea of his cognitive level until > there are more social and language skills, but they saw a lot that said to > them he is not retarded. > > He gave us a WHOLE lot of things to read and some decisions to make > regarding his treatment. (ABA vs Greenspan) He said we should take about a > month to read it all and make the decisions. > > I'm releived to finally have something official, and to know that we can > start some other wheels turning to get him what he needs. There wasn't > anything he said that surprised me. I'm glad they're saying autism and not > PDD; it will get us more services. He was not willing to say mild, > moderate, severe; or high-functioning or low-functioning. He said he > doesn't like using those labels because things can change so much as time > passes. I see his point, but... I do think Mikey's going to be > high-functoning but we'll have to wait and see how therapy goes. > > Here are his scores, if you're interested. They used a scale of - 100 to > +100, with 0 being average. He said the need for intervention starts at > about -25. I believe these scores are quite accurate. Mikey had very > typical days for these tests. > > Gross and fine motor were both -8. > > Social and academic were both -30. > > Language was -68. > > Overall, this would average him at adjusted age level of about 17 months. > His language skills are about on the level of an 8 month old. He was 24 > months when the test was done. > > We did some testing at home and that was included as a parental report. > Some things we scored him lower than they did, others we scored him higher. > But mostly they were pretty darn close; within 2-3 months either way. > > So that's what happened. I'm not as emotional as I thought I might > be...just going, yeah, I knew that, now what? We've got a lot of work ahead > of us. I'm not looking forward to it but I'm glad to be able to get it > started, for Mikey's sake. > > > -Sara. > who now needs to change her sig line > wife to Matt > SAHM to nurslings > Mikey, 9/14/99, autistic spectrum? and > Gabe, born at home 5/17/01, GERD > http://home.earthlink.net/~thebyks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 Hi Sara, I wonder about autism getting you more services. I no longer believe that to be true. Maybe more coverage through the Medicaid waiver, but the school system is using Boone's diagnosis as an excuse not to educate him. They say he's severe and that's where he stays -- in the severely developmentally delayed class. He teaches himself more than they ever will. Anyway, your situation is probably totally different than mine. I live in Georgia after all. Anyway, sounds like you're taking the diagnosis very well. Sissi It's official > Sorry if you get this twice, Yahoo is being funky to me tonight... > > We saw Amigo & Bayda today...Actually just Bayda...Mikey's officially > autistic. > > They do not think he's retarded, although he tested that way; they think > that was purely because of the language issues - which they rated as severe; > our ST rated them moderate, but I think their test was more accurate. He > said we won't be able to get an accurate idea of his cognitive level until > there are more social and language skills, but they saw a lot that said to > them he is not retarded. > > He gave us a WHOLE lot of things to read and some decisions to make > regarding his treatment. (ABA vs Greenspan) He said we should take about a > month to read it all and make the decisions. > > I'm releived to finally have something official, and to know that we can > start some other wheels turning to get him what he needs. There wasn't > anything he said that surprised me. I'm glad they're saying autism and not > PDD; it will get us more services. He was not willing to say mild, > moderate, severe; or high-functioning or low-functioning. He said he > doesn't like using those labels because things can change so much as time > passes. I see his point, but... I do think Mikey's going to be > high-functoning but we'll have to wait and see how therapy goes. > > Here are his scores, if you're interested. They used a scale of -100 to > +100, with 0 being average. He said the need for intervention starts at > about -25. I believe these scores are quite accurate. Mikey had very > typical days for these tests. > > Gross and fine motor were both -8. > > Social and academic were both -30. > > Language was -68. > > Overall, this would average him at adjusted age level of about 17 months. > His language skills are about on the level of an 8 month old. He was 24 > months when the test was done. > > We did some testing at home and that was included as a parental report. > Some things we scored him lower than they did, others we scored him higher. > But mostly they were pretty darn close; within 2-3 months either way. > > So that's what happened. I'm not as emotional as I thought I might > be...just going, yeah, I knew that, now what? We've got a lot of work ahead > of us. I'm not looking forward to it but I'm glad to be able to get it > started, for Mikey's sake. > > > -Sara. > who now needs to change her sig line > wife to Matt > SAHM to nurslings > Mikey, 9/14/99, autistic spectrum? and > Gabe, born at home 5/17/01, GERD > http://home.earthlink.net/~thebyks > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 You know what, Sara? Congratulations! I think that's actually appropriate to say. You just finished the Prologue of your book. Now we begin the story, and this is a good thing. I remember a certain post of yours, awhile back, about a day that you and Mikey had a really good time at the park with a friend and her child? You came back wondering if Mikey was indeed autistic - - he was so normal that day. Do you remember? I was really affected by that post because it resembled a whole two years of my girls' lives... and I hated to see you go through it too. Yeah, I lived those kinds of days for 2 years, interchanging with " she's not only autistic, there has got to be something MORE WRONG with her! " kind of days too. So now you have the DX, right or wrong, and that is where you will start. If it makes you feel any better - I am quite certain that Mikey scored about the same at 24 months that my girls would at 42 months old (right now). So you can see that you are really ahead of the game, Sara, and I envy that! I wish I had your will, strength, and determination back when my girls were 2 years old. I didn't, so there is no sense in wishing for it, and I am quite sure that I needed that extra time to be able to accept the dx without going insane, but still.... you know? So I officially " welcome " you to the club, girlie. And I wish you and Mikey ALL OF THE LUCK TO BE HAD!!!!! I am really excited to see how far he comes by this time next year!!!! Grace It's official > Sorry if you get this twice, Yahoo is being funky to me tonight... > > We saw Amigo & Bayda today...Actually just Bayda...Mikey's officially > autistic. > > They do not think he's retarded, although he tested that way; they think > that was purely because of the language issues - which they rated as severe; > our ST rated them moderate, but I think their test was more accurate. He > said we won't be able to get an accurate idea of his cognitive level until > there are more social and language skills, but they saw a lot that said to > them he is not retarded. > > He gave us a WHOLE lot of things to read and some decisions to make > regarding his treatment. (ABA vs Greenspan) He said we should take about a > month to read it all and make the decisions. > > I'm releived to finally have something official, and to know that we can > start some other wheels turning to get him what he needs. There wasn't > anything he said that surprised me. I'm glad they're saying autism and not > PDD; it will get us more services. He was not willing to say mild, > moderate, severe; or high-functioning or low-functioning. He said he > doesn't like using those labels because things can change so much as time > passes. I see his point, but... I do think Mikey's going to be > high-functoning but we'll have to wait and see how therapy goes. > > Here are his scores, if you're interested. They used a scale of -100 to > +100, with 0 being average. He said the need for intervention starts at > about -25. I believe these scores are quite accurate. Mikey had very > typical days for these tests. > > Gross and fine motor were both -8. > > Social and academic were both -30. > > Language was -68. > > Overall, this would average him at adjusted age level of about 17 months. > His language skills are about on the level of an 8 month old. He was 24 > months when the test was done. > > We did some testing at home and that was included as a parental report. > Some things we scored him lower than they did, others we scored him higher. > But mostly they were pretty darn close; within 2-3 months either way. > > So that's what happened. I'm not as emotional as I thought I might > be...just going, yeah, I knew that, now what? We've got a lot of work ahead > of us. I'm not looking forward to it but I'm glad to be able to get it > started, for Mikey's sake. > > > -Sara. > who now needs to change her sig line > wife to Matt > SAHM to nurslings > Mikey, 9/14/99, autistic spectrum? and > Gabe, born at home 5/17/01, GERD > http://home.earthlink.net/~thebyks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 They aren't idiots -- they're sneaky, conniving bureaucrats who are afraid to spend one dime on this kid because " everyone else will want the same things. " Sissi Re: It's official > Sissi, > They are IDIOTS if they believe that's where he has to stay! The more we > front load the kids at a young age, the farther they can come! > Sue > > ---------------------------------------------------- > Sign Up for NetZero Platinum Today > Only $9.95 per month! > http://my.netzero.net/s/signup?r=platinum & refcd=PT97 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 Sara: Well, it is an odd relief usually to quit hoping that suddenly your child will act totally normal. I had persuaded myself that Putter would get a PDD-NOS dx; I could not, by three and a half tell myself that he was not on the spectrum. It was just impossible that he was not. But autism does mean more services in Michigan. As for deciding how you want to approach treatment, well, you are so lucky that Mikey is so young and that you were smart enough to pick up on it so early. I think Mikey will be at least HFA, if not AS (because he is still so young that his language delays would not remove that possibility). And I am not surprised to hear that they think he is not MR. I don't think so either. Good luck deciding on what you do for Mikey. Remember no decision has to be permanent; try one thing and if it does not work, then try another. Salli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 > > So that's what happened. I'm not as emotional as I thought I might > be...just going, yeah, I knew that, now what? We've got a lot of >work ahead of us. I'm not looking forward to it but I'm glad to be >able to get it started, for Mikey's sake. > > > -Sara. Well Sara - That sounds about right. The dx really isn't an AHA moment, more of a, like you said, " OK, now what? " moment. I'm glad you were given information to look thru. There are so many approaches... behavioral, dietary, etc., etc. The fun is just beginning!!! Penny :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 Sara, I'm glad they gave you a solid diagnosis. It is definately more helpful when it comes to services. I think the fact that you were pretty sure that it was autism is why you're not so upset that it is. It's also wonderful that you got him diagnosed so early. He's getting a great start! Sue ---------------------------------------------------- Sign Up for NetZero Platinum Today Only $9.95 per month! http://my.netzero.net/s/signup?r=platinum & refcd=PT97 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 Sissi, They are IDIOTS if they believe that's where he has to stay! The more we front load the kids at a young age, the farther they can come! Sue ---------------------------------------------------- Sign Up for NetZero Platinum Today Only $9.95 per month! http://my.netzero.net/s/signup?r=platinum & refcd=PT97 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 > They aren't idiots -- they're sneaky, conniving bureaucrats who are >afraid to spend one dime on this kid because " everyone else will >want the same > things. " > Sissi<<<< > This is a very good point, Sissi Penny - Mom to Jacqui, who STILL doesn't have an aide. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 > >We saw Amigo & Bayda today...Actually just Bayda...Mikey's officially >autistic. Well, now the easy part is done, eh? Now comes all the hard stuff....where you go from here. >They do not think he's retarded, I'm glad they realized this was due to the language issues. The said the same about Kep. > >He gave us a WHOLE lot of things to read and some decisions to make >regarding his treatment. (ABA vs Greenspan) Definitely read up, but don't think that you have to stick to ONLY one type of therapy. Go with your gut on this one. Salli will tell you that ABA and Greenspan can be very complementary. I would suggest only starting one at a time, but don't limit yourself if you think more can help Mikey. He was not willing to say mild, >moderate, severe; or high-functioning or low-functioning. When they are that young, they really can't give you that kind of label. I think it is very promising that Mikey is starting so young. He has really great chances. I understand the relief! Now you have something to work with. You are already doing a good job with Mikey, but now you will have many more resources available to you. Amy _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
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