Guest guest Posted March 12, 2003 Report Share Posted March 12, 2003 thanks--I am ready to hit the hay now--of course when I could have gone right to sleep there were things that needed to get done for the am--a mother's job is never done!!!! thanks for the good wishes, and yes, he is the bravest boy I know!! maria Re: tIMMY > , > > You all must be sooo exhausted. Still, it sounds like a pretty positive outcome. > What a trooper Master Timmy is! > Hang in there, > > Anne, mom of Penina (CHARGE, 6 1/2) > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2003 Report Share Posted March 12, 2003 - From the keyboard of maria halloran: > Hi all, again this will be generic ... I'm glad that it went OK and hope that the prosthesis does the job. Hugs to Timmy and sleep to you. Debbie -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2003 Report Share Posted March 12, 2003 thank you!!! I slept 8 hours straight a record I think!!! Timmy is doing well, still sleeping--so we'll see how the day goes. hugs, Re: tIMMY > - > > >From the keyboard of maria halloran: > > Hi all, again this will be generic ... > > I'm glad that it went OK and hope that the prosthesis does the job. > Hugs to Timmy and sleep to you. > > Debbie > -- > + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + > | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | > | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | > | birth defects, not by eliminating them or making them happen only to bad | > | people (He can't do that), but by summoning forth friends and neighbors | > + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2003 Report Share Posted March 13, 2003 thank you--I don't feel like a superwoman---but we'll get through it all!!! maria : tIMMY > > > maria, its overwhelming to read about how brave charge mothers are, youll > are indeed superwomen, Gods chosen ones, loves to Timmy, Pushpa grandma to > Aman nearly 17 months old > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 Way to go, Timmy! , does Timmy have an interpreter? If he doesn't maybe you could pursue a para professional to help him. has a nurse and an interpreter. There are only 11 kids in her class, so that helps quite a bit! As a teacher, I don't usually favor retention. Will it help him catch up or will he just be a year older and still struggle? do you know what I mean? The kids in his class already know him. Will it hurt him socially if he is retained? Is he young for his class? What is the class behind him like? Supportive parents? What is the teacher like? What kind of support does he have? These are questions that we struggled with when we placed in kindergarten after a quarter in prekindergarten. Of course, part of that was that the preK teacher did not support her IEP and we could have sued the school! But my husband works there... When persists with " What? " I just turn the question back to her. This has curtailed it a bit, and now she usually needs something repeated instead of just saying What? as a habit. On Friday, April 18, 2003, at 08:35 AM, maria halloran wrote: > Hi all, just a short note to tell you we have a celebrity in our home. > Timmy recieved the Good Citizen award for the third marking period > yesterday. It was a surprise for him, he was surprised when he saw > pat and I and the kids there, and then he got the award. He got > embaressed, but was happy. > > I have a question for all of you who have already gone through this > time of your lives, or those of you going through it now. Timmy is > doing ok in school, but is struggling some with math and reading. the > teacher asked yesterday if I had any concerns for the iep mtg. I > mentioned the hearing, sign language, phonics, his constantly asking > what--which we think is more habit than not hearing, because 9 times > out of ten if we ask what did we say he knows. But my biggest concern > was how is he keeping up? and if he's not, do we retain him, or let > him go to second grade and be even further behind and frustrated? she > said they/she has never retained a classified child, they just push > them through. > > he will be 8 in august, he had 3 years of pre-school, so emotionally > and socially he is on age level, he knows everything about everybody > around him, but the thought processes of school work and the fine > motor just isn't there. any suggestions? > > my thoughts are --he is probably never going to be top of the class, > but do we want to make him frustrated, and feel like he's never going > to understand or catch up? > I remember that feeling --and it's not enjoyable. > but do we want an 8 year old first grader, who has tried his best and > made to do it again? > I just want the best for him--I guess there is no easy answer. This > has not been an easy year for him medically, witht he hearing, but > whose to say next year will be better or worse? > > help!!!! > maria mom to timmy 7.5 ChARGE, keegan 5, liam 2.5 wife to pat > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 - doesn't have CHARGE but has been behind in academics before mostly due to lack of interest and willingness to do the work. One thing that helped him to get ahead of the game was to work on his reading skills over the summer. We basically tasked him with reading a book every day (which he did on the way to summer camp .. it did help that his summer camp had a " banana split " club where he earned points towards a weekly treat by reading and the reading in the car counted towards his totals). We had quite a few of the Dr Suess books, including some of the harder tongue twisters which he found quite challenging but fun! I would expect that if we'd also focused on his math just a bit it would helped as well, but he didn't seem to need that as much. The result was that he started this year much further ahead than the other kids mostly 'cos he didn't lose any ground like so many of the others had (who mostly didn't do any academics all summer). His first report card home was straight As and the success has kept him more motivated all year (he's been on the A/B honor roll ever since and has missed straight As by just a couple of points on each subsequent report card). I realize that things are harder for Timmy, but perhaps by working on his math and reading over the summer he can gain a bit of an advantage that can help him to not get so far behind the rest of the year. Good luck, Debbie PS It took the combined efforts of his teachers and us to " task " him with the reading. If the " assignment " had just come from us, I know that he would not have been willing to do it. From the keyboard of maria halloran: >... > I have a question for all of you who have already gone through this time > of your lives, or those of you going through it now. Timmy is doing ok > in school, but is struggling some with math and reading. the teacher asked > yesterday if I had any concerns for the iep mtg. I mentioned the hearing, > sign language, phonics, his constantly asking what--which we think is more > habit than not hearing, because 9 times out of ten if we ask what did we > say he knows. But my biggest concern was how is he keeping up? and if > he's not, do we retain him, or let him go to second grade and be even > further behind and frustrated? she said they/she has never retained a > classified child, they just push them through. > > he will be 8 in august, he had 3 years of pre-school, so emotionally and > socially he is on age level, he knows everything about everybody around him, > but the thought processes of school work and the fine motor just isn't there. > any suggestions? > > my thoughts are --he is probably never going to be top of the class, but do > we want to make him frustrated, and feel like he's never going to understand > or catch up? > > I remember that feeling --and it's not enjoyable. > but do we want an 8 year old first grader, who has tried his best and made > to do it again? > > I just want the best for him--I guess there is no easy answer. This has not > been an easy year for him medically, witht he hearing, but whose to say next > year will be better or worse? > > help!!!! > maria mom to timmy 7.5 ChARGE, keegan 5, liam 2.5 wife to pat -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 - From the keyboard of maria halloran: > Hi all, just a short note to tell you we have a celebrity in our home. Timmy recieved the Good Citizen award for the third marking period yesterday. It was a surprise for him, he was surprised when he saw pat and I and the kids there, and then he got the award. He got embaressed, but was happy. >... Congratulations to him!! Way to go!! Hugs, Debbie -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 - has been through the Deaf and Hard of Hearing Program here in our hometown Simi Valley, California. Normally when there is a discrepancy between any of the three areas of academics, social maturity and age they try to accommodate each area. The DHH Elementary classes are split into three groups: pre-school and Kindergarten (typically ages three through five and a half) is one group. Early primary (1st through 3rd grade - typically ages six through eight) is the second. Upper Primary (4th through 6th grade - typically ages nine through twelve) is the third. Some children spend part of their day in one class and part in another. Typically, they will spend the mornings in the class best suited to their academic development and their afternoons in the class that is the most appropriate for their social development. Sometimes children are put into their age groups for social exposure even though they may be socially delayed. Retention sometimes occurs between the Middle School campus (7th and 8th grades) and the High School Campus (9th - 12th grades) - because the gap from 8th to 9th grade can be really overwhelming. This works in our school in part because each of the three classes has between eight and twelve children and the teacher has at least one aide (some of the children have their own full time aides as well). It also works because we are fortunate to have three tremendous teachers at our school. Whenever children are able, they are mainstreamed into their own age group into a full-inclusion hearing classroom with a full time sign language interpreter. Sometimes they are mainstreamed for selected subjects, and sometimes for the entire day. So the education of each child can be truly individualized. I have found (personally) that math can be a developmental issue, and so long as progress is being made, I am unconcerned. I found the best gauge I had of how was in comparison to " grade level expectations " was to look at his reading and language arts scores. What grade level is he reading at? What are his scores in expressive and receptive language? Sometimes it is hard to tell how one's child is doing because special education is so individually focused. It can work both ways. has many strengths that were not apparent in the special Ed setting because so much focus is placed on supporting the areas of weakness. Now that he is in Middle School, he has found that he has many many strengths in comparison to his hearing peers. Lastly, I notice that Timmy is your oldest. is ours as well. I never truly knew what was appropriate until I experienced that school year with our other two children. In hindsight was more age appropriate than I ever realized. Of course it always has its own unique " --spin " on it - but what doesn't? At the end of second grade alot of the regular Ed children were still struggling readers and really being spoon fed worksheets and assignments. The independent studying and self-accountability for schoolwork really emerges in third grade and continues on through the upper grades. In California curriculum there is a catch phrase " Up through Second grade the children are learning to read. After Second grade, they are reading to learn. " Even for medically unremarkable bright children, often all the developmental pieces for fluent reading don't come together until the very end of the seventh year. I saw lots of children leave second grade struggling and enter third grade as comfortable readers and independent learners. I hope I understood your concerns correctly and that my response was of some help- Best always, Yuka >snip< > But my biggest concern was how is he keeping up? and if he's not, do we retain him, or let him go to second grade and be even further behind and frustrated? she said they/she has never retained a classified child, they just push them through. > > he will be 8 in august, he had 3 years of pre-school, so emotionally and socially he is on age level, he knows everything about everybody around him, but the thought processes of school work and the fine motor just isn't there. any suggestions? > maria mom to timmy 7.5 ChARGE, keegan 5, liam 2.5 wife to pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 , Congrats to Timmy!!! I don't have any advice for the school situation as I've not been there yet but I would just think about the effects of staying back on Timmy - if it won't be that big of a deal with his friends going on and him staying back and going ahead will be really frustrating for him with not understanding everything then it might be worth thinking about... Tough decision... ~ Weir Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme Saint , New Brunswick, Canada Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir CHARGE Syndrome Canada - http://www.chargesyndrome.ca TIMMY Hi all, just a short note to tell you we have a celebrity in our home. Timmy recieved the Good Citizen award for the third marking period yesterday. It was a surprise for him, he was surprised when he saw pat and I and the kids there, and then he got the award. He got embaressed, but was happy. I have a question for all of you who have already gone through this time of your lives, or those of you going through it now. Timmy is doing ok in school, but is struggling some with math and reading. the teacher asked yesterday if I had any concerns for the iep mtg. I mentioned the hearing, sign language, phonics, his constantly asking what--which we think is more habit than not hearing, because 9 times out of ten if we ask what did we say he knows. But my biggest concern was how is he keeping up? and if he's not, do we retain him, or let him go to second grade and be even further behind and frustrated? she said they/she has never retained a classified child, they just push them through. he will be 8 in august, he had 3 years of pre-school, so emotionally and socially he is on age level, he knows everything about everybody around him, but the thought processes of school work and the fine motor just isn't there. any suggestions? my thoughts are --he is probably never going to be top of the class, but do we want to make him frustrated, and feel like he's never going to understand or catch up? I remember that feeling --and it's not enjoyable. but do we want an 8 year old first grader, who has tried his best and made to do it again? I just want the best for him--I guess there is no easy answer. This has not been an easy year for him medically, witht he hearing, but whose to say next year will be better or worse? help!!!! maria mom to timmy 7.5 ChARGE, keegan 5, liam 2.5 wife to pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 Hi all, thanks for the responses about the school thing. We are in kind of a catch 22, he is not bad enough physically or mentally to really need an interpretor--unless we push the sign language thing to the full extent. and he is in an inclass support class. 14 kids, 5 classified, timmy being the worst I think as far as disability. two teachers one special ed, one reg. ed. and an aide in the am for the entire class. the only time tim has his own aide is in pe, and that is not even seen as HIS aide to the others. I plan on keeping him busy with reading and math this summer, but also trying to keep it fun for the other two and him. next year will be the same situation as far as teachers and class size. I have met the teacher for next year, she is very interested in timmy and trying to be up to date on all that that entails. again thanks for your input and hopefully, we find the answer or at least the best solution to the problem. maria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 - Does the teacher sign throughout the school day? Forgive me for not knowing, but does Timmy have a hearing loss? In 's IEP, because of his hearing loss, it has always been specified that he have a multi-modal approach to language and have a sign language interpreter provided for any school time where the teacher themselves was not signing. Language, language, language - it was and is so very very important. It wasn't my brilliant foresight that provided this - it was his pre-school DHH teacher! =) Best of luck- sounds like you're doing a terrific job! Just the fact that you are second guessing yourself and the school in such an articulate manner probably means you are already doing the best things for him ... yuka >snip< > Hi all, thanks for the responses about the school thing. We are in kind of a catch 22, he is not bad enough physically or mentally to really need an interpreter--unless we push the sign language thing to the full extent. and he is in an inclass support class. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 - From the keyboard of maria halloran: > another thought after reading through some posts again, the teacher said alot of the kids are not up to grade level in reading--so maybe they don't worry so much about it in first grade? AUGHHHHHHHHHHHHHHH!!! I think that's very true. wasn't reading at grade level at the beginning of 1st, but they put him in a special reading class and he was caught up and passed grade level by the end (our district is *very* academically strong). > I guess I just second guess myself too much--maybe more will be revealed at the iep and a group decision can be made then. That sounds like a good plan. Figure out where's he's really at with respect to the other kids. Is he where they think he should be? > another question? do your children have to do the state tests? timmy's class had them, he did it, but the teacher was allowed to write for him and adjust the test as needed. still, alot of frustration for him and her. she said maybe ask that he be exempt from them. As I understand it, the special ed kids don't need to do them in our state (Texas), but at our school they have them do them. However, I don't know what adjustments are made for them. Our school is one of two in the (small) district that takes all levels of special ed kids (not just the mildly affected kids) and has them all mainstreamed as much as possible. Good luck, Debbie -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 Hi - Alot of kids don't read well in first grade. As I said in my other post - they are learning to read up through the end of second grade. Some even " perform " below grade level in first and second grade and emerge as brilliant readers in third or fourth grade. (I had the wonderful opportunity to help with the first and second grade classrooms for both my regular education sons). didn't show ANY signs of language, and then in the end of third grade he was a VORACIOUS reader (and still is!). For us (California) State tests don't begin until second grade. Our school doesn't really " like " to test the special Ed population because it lowers the school averages (the DHH scores are not separated). Some of the other children in our classes were tested with aides and at different grade levels (a nine year old might take the second grade exam) just to see how they score.... Some things I " played " with my children at this stage were to encourage an interest in reading, recognizing letters and numbers, making some or all of the phonetic sounds, recognizing some sight words, making a one-to-one correspondence in numbers and counting, and possibly conserving up to five (example: show the child five beans. Hide two and show the child three - ask the child how many are missing -) Does any of this apply? or am I travelling up the wrong street? (I do that fairly often........LOL) Yuka > another thought after reading through some posts again, the teacher said alot of the kids are not up to grade level in reading--so maybe they don't worry so much about it in first grade? AUGHHHHHHHHHHHHHHH!!! > I guess I just second guess myself too much--maybe more will be revealed at the iep and a group decision can be made then. > > another question? do your children have to do the state tests? timmy's class had them, he did it, but the teacher was allowed to write for him and adjust the test as needed. still, alot of frustration for him and her. she said maybe ask that he be exempt from them. > > maria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 Regardless of disability there are a lot of kids not up to grade level on reading at the end of first grade. That may be true, but the belief that they will eventually catch up on their own is pretty scary. Kids need to specifically be taught the code to reading, some may catch on by osmosis, most do not. Kids who struggle to read in first grade very often struggle to read later in life. With our kids with CHARGE it is a whole different situation, there are so many variables on their learning, so this is not about Timmy, but I find it concerning when teachers in first grade say not to worry if a kid can't read in first grade. They don't see those kids all those years later still struggling. And as you might guess I have personal experience in this for my 15yo as well as many of the other kids I advocate for. Tyler decodes at the first percentile for his age and he is 9th grade and he does not have CHARGE although we have been going round and round with the school about it since second grade when he couldn't read and the other kids could. He was also surrounded by books and reading, our house is a reading house. Having your kids read 15 minutes a day and expecting they will automatically read better is false unless they know the code. Okay off my soap box. Kim Mom to Dylan 6 CHARGE, Kayla 12, Tyler 15 > another thought after reading through some posts again, the teacher said alot > of the kids are not up to grade level in reading--so maybe they don't worry so > much about it in first grade? AUGHHHHHHHHHHHHHHH!!! > I guess I just second guess myself too much--maybe more will be revealed at > the iep and a group decision can be made then. > > another question? do your children have to do the state tests? timmy's class > had them, he did it, but the teacher was allowed to write for him and adjust > the test as needed. still, alot of frustration for him and her. she said > maybe ask that he be exempt from them. > > maria > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 As far as state tests, with No child Left Behind, special ed kids will still be required to take them. I recommend everyone pay attention closely to the impact of NCLB and get involved in the reauthorization process of IDEA. Kim > - > > From the keyboard of maria halloran: >> another thought after reading through some posts again, the teacher said alot >> of the kids are not up to grade level in reading--so maybe they don't worry >> so much about it in first grade? AUGHHHHHHHHHHHHHHH!!! > > I think that's very true. wasn't reading at grade level at the > beginning of 1st, but they put him in a special reading class and he > was caught up and passed grade level by the end (our district is *very* > academically strong). > >> I guess I just second guess myself too much--maybe more will be revealed at >> the iep and a group decision can be made then. > > That sounds like a good plan. Figure out where's he's really at with > respect to the other kids. Is he where they think he should be? > >> another question? do your children have to do the state tests? timmy's >> class had them, he did it, but the teacher was allowed to write for him and >> adjust the test as needed. still, alot of frustration for him and her. she >> said maybe ask that he be exempt from them. > > As I understand it, the special ed kids don't need to do them in our state > (Texas), but at our school they have them do them. However, I don't know > what adjustments are made for them. Our school is one of two in the (small) > district that takes all levels of special ed kids (not just the mildly > affected kids) and has them all mainstreamed as much as possible. > > Good luck, > Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 Yuka, no, they do not sign and do not know how to sign--neither does the speech therapist. another issue, becasue we want to start signing with him. right now he has moderate loss left ear and is aided the right ear he just had a prosthesis put in and don't know what the hearing is yet, we go may 1 for a hearing test. maria ps thanks for the vote of confidence!! Re: re:timmy > - > Does the teacher sign throughout the school day? Forgive me for not > knowing, but does Timmy have a hearing loss? In 's IEP, because of his > hearing loss, it has always been specified that he have a multi-modal > approach to language and have a sign language interpreter provided for any > school time where the teacher themselves was not signing. > Language, language, language - it was and is so very very important. It > wasn't my brilliant foresight that provided this - it was his pre-school DHH > teacher! =) > > Best of luck- sounds like you're doing a terrific job! Just the fact that > you are second guessing yourself and the school in such an articulate manner > probably means you are already doing the best things for him ... > > yuka > > >snip< > > Hi all, thanks for the responses about the school thing. We are in kind > of a catch 22, he is not bad enough physically or mentally to really need an > interpreter--unless we push the sign language thing to the full extent. and > he is in an inclass support class. > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 it applies, no wrong turns today!! maria Re: timmy > Hi - > Alot of kids don't read well in first grade. As I said in my other post - > they are learning to read up through the end of second grade. Some even > " perform " below grade level in first and second grade and emerge as > brilliant readers in third or fourth grade. (I had the wonderful > opportunity to help with the first and second grade classrooms for both my > regular education sons). didn't show ANY signs of language, and then > in the end of third grade he was a VORACIOUS reader (and still is!). > > For us (California) State tests don't begin until second grade. Our school > doesn't really " like " to test the special Ed population because it lowers > the school averages (the DHH scores are not separated). Some of the other > children in our classes were tested with aides and at different grade levels > (a nine year old might take the second grade exam) just to see how they > score.... > > Some things I " played " with my children at this stage were to encourage an > interest in reading, recognizing letters and numbers, making some or all of > the phonetic sounds, recognizing some sight words, making a one-to-one > correspondence in numbers and counting, and possibly conserving up to five > (example: show the child five beans. Hide two and show the child three - > ask the child how many are missing -) > > Does any of this apply? or am I travelling up the wrong street? (I do that > fairly often........LOL) > > Yuka > > > > another thought after reading through some posts again, the teacher said > alot of the kids are not up to grade level in reading--so maybe they don't > worry so much about it in first grade? AUGHHHHHHHHHHHHHHH!!! > > I guess I just second guess myself too much--maybe more will be revealed > at the iep and a group decision can be made then. > > > > another question? do your children have to do the state tests? timmy's > class had them, he did it, but the teacher was allowed to write for him and > adjust the test as needed. still, alot of frustration for him and her. she > said maybe ask that he be exempt from them. > > > > maria > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 thanks Debbie, how is your little one? I bet she's getting big!!! hugs to all, maria Re: timmy > - > > >From the keyboard of maria halloran: > > another thought after reading through some posts again, the teacher said alot of the kids are not up to grade level in reading--so maybe they don't worry so much about it in first grade? AUGHHHHHHHHHHHHHHH!!! > > I think that's very true. wasn't reading at grade level at the > beginning of 1st, but they put him in a special reading class and he > was caught up and passed grade level by the end (our district is *very* > academically strong). > > > I guess I just second guess myself too much--maybe more will be revealed at the iep and a group decision can be made then. > > That sounds like a good plan. Figure out where's he's really at with > respect to the other kids. Is he where they think he should be? > > > another question? do your children have to do the state tests? timmy's class had them, he did it, but the teacher was allowed to write for him and adjust the test as needed. still, alot of frustration for him and her. she said maybe ask that he be exempt from them. > > As I understand it, the special ed kids don't need to do them in our state > (Texas), but at our school they have them do them. However, I don't know > what adjustments are made for them. Our school is one of two in the (small) > district that takes all levels of special ed kids (not just the mildly > affected kids) and has them all mainstreamed as much as possible. > > Good luck, > Debbie > -- > + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + > | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | > | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | > | birth defects, not by eliminating them or making them happen only to bad | > | people (He can't do that), but by summoning forth friends and neighbors | > + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 WAY TO GO TIMMY !!!!!!!!!!!!!!! , I can't speak to what is best for Timmy because I don't know him. I can speak as a mom of a cHARGEr and a junior high special education teacher. Our daughter is now 18. 5'2 " 110lbs. She graduates from HS in June and will attend University of Akron in the fall. was retained in Kindergarten. She was sick so much she was unable to keep up. She was also very very tiny so size wasn't an issue. Intellegence wise she is " average " but works very very hard to earn average grades. Math has been very very difficult for her. She was never affected by being retained. She likes being " older " than the others. Eventually she wasn't the very shortest in her class. She drove ( never has the car much) a year eariler than her classmantes. (Big stuff when you are 16). In her case we did the right thing. She was only on a Speech IEP until the end of 4th grade. In High School she has been on a 504 Plan for preferencial seating because of bilateral hearing aids. She feels more confident being 18 in HS. As a college freshman she will be 19. My husband and I feel that year is a blessing. She has never told me she was angry about being retained. I teach junior high special ed. self contained and inclusion classes. Many of the LD and DH student we get in 7th and 8th grade public school are 4 and 5 years behind academically and often socially about as far behind. It makes it hard on them in junior high. Our school system for the most part will not retain a child on an IEP. Many parents wish they would retain their child but the schools feel they should " move on " . I watch parents set aside their gut instincts about their own child and give in to a school and move their child ahead. I have more than once told parents the story of my own child that was retained. Like I said, I don't know Timmy but I do know that parents, especially CHARGE parents, know their kids better than anyone. Listen to those around you but especially listen to Timmy and your own heart and mind. Moms and Dads do know best. Give Timmy a hug from a teacher who know how important that award is. Blessing and Hugs, Lynn Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2003 Report Share Posted April 19, 2003 , I teach reading to grades 1-4. There is a HUGE difference among first graders, special needs or not. Most make a big growth in 2nd grade. If they don't, then I usually refer them for further testing. On Friday, April 18, 2003, at 01:10 PM, maria halloran wrote: > another thought after reading through some posts again, the teacher > said alot of the kids are not up to grade level in reading--so maybe > they don't worry so much about it in first grade? > AUGHHHHHHHHHHHHHHH!!! > I guess I just second guess myself too much--maybe more will be > revealed at the iep and a group decision can be made then. > > another question? do your children have to do the state tests? > timmy's class had them, he did it, but the teacher was allowed to > write for him and adjust the test as needed. still, alot of > frustration for him and her. she said maybe ask that he be exempt > from them. > > maria > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2003 Report Share Posted May 6, 2003 Dear - I found your email extremely heartfelt, and you neither rambled nor sounded like you felt sorry for yourself. I hope I haven't misunderstood what I read in your post, but I feel that I have felt the same way about at times - wishing he didn't have to be so different - wishing it weren't so overwhelming, wishing it could maybe be only one thing or the other but not so many things at once. I am going to share with you some of my shameful thoughts - when he was in infant program I found myself being envious of a little boys with downs syndrome because he could walk and eat. When he entered the deaf and hard of hearing program, I found myself envying a child who was " merely deaf. " But those moments of feeling overwhelmed always passed, and in hindsight were always brought on by unexpected changes in perception - usually brought on externally - reframing in a medical diagnosis or educational setting. was still the same - it just seemed as if my expectations were being changed. The deaf culture is very strong. The status of deafness is not regarded as a disability. We have had great fortune to be surrounded with tremendous deaf educators, deaf adults, deaf teens and deaf families. Their determination and assertion of their potentials and abilities has been a strong support for . He has always actively not identified with the medical portions of his challenges. The one year he had to share a health aide with two other children really aggravated him - he did not like that grouping. One of the most loving and inspiring people we know is a deaf adult mother of three thriving deaf children and an educator who has always made it crystal clear that to succeed you must have pride in yourself and *yes* you must master English in all forms better than any hearing person. There is this very loving supportive no nonsense attitude she has that was just the kick in the pants I needed. She is probably the single largest catalyst I had in feeling that was the same as everyone else - he is a person, doing his best - a deaf person, who must master English better than any hearing person in all forms - spoken, expressive, receptive and written. His medical issues, gross and fine motor issues became incidental idiosyncrasies. She gave me the permission I hadn't given myself yet to see as whole, not give a darn how anyone else saw him. She did this in from the position of being one of the other moms of the children in that deaf and hard of hearing grade level. She modeled this for me in her interactions with her children, and in her interactions with . She directed me (lovingly and directly) by unbunching my concerns without belittling them. By affirming for me the whole person and tremendous potential I saw in my son and demanding I stop at nothing until I open every door and opportunity for him. She also gave me a whole list of things not to feel sorry about - like not to feel sorry for how hard he must work - but to be grateful that the work can be done. To not feel sorry that his childhood is not " normal " - there is no normal, he is defining normal for himself - this is normal - for him and our family. Harder though are the times when wants to be like everyone else. Right now he'd like to be a bit taller. He'd like to be in puberty - instead of so obviously pre-pubertal - especially as his classmates are primarily all medically unremarkable thirteen and fourteen year olds. He'd like to have one really good friend. He'd like to be a boy who would be interesting to Lizzy McGuire/ Duff. Timmy is one very lucky boy - I just know you will find all the best opporunitites for your darling boy. Even as you lament that " it's just not fair " you have already turned this grain of sand into a pearl of opportunity for your boy. I hope what I have shared was not too off or burdensome- take good care - the best of care- yuka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2003 Report Share Posted May 6, 2003 Yuka, You have eloquently said what many of us feel... " merely deaf " would be a lot easier, wouldn't it? And I suffer everytime that someone sighs because they have to repeat something to ...and every time she misses a school function because she is ill...and everytime she cannot " do " what kids her age can do... I also have a person who gives me a " kick in the pants " (other than !). 's interpreter is very much her advocate and keeps urging me to let explore deaf culture. She makes sure has what she needs at school, as Mo is the only deaf child there. goes to a deaf church with a high school girl that wants to become a deaf educator...She loves it and has befriended an older gentleman named Norman. She rips out her hearing aids and almost runs in the door! This also makes her sign more as she relies on her voice a lot. G Re: timmy > Dear - > I found your email extremely heartfelt, and you neither rambled nor sounded > like you felt sorry for yourself. > I hope I haven't misunderstood what I read in your post, but I feel that I > have felt the same way about at times - wishing he didn't have to be > so different - wishing it weren't so overwhelming, wishing it could maybe be > only one thing or the other but not so many things at once. I am going to > share with you some of my shameful thoughts - when he was in infant program > I found myself being envious of a little boys with downs syndrome because he > could walk and eat. When he entered the deaf and hard of hearing program, I > found myself envying a child who was " merely deaf. " But those moments of > feeling overwhelmed always passed, and in hindsight were always brought on > by unexpected changes in perception - usually brought on externally - > reframing in a medical diagnosis or educational setting. was still the > same - it just seemed as if my expectations were being changed. > > The deaf culture is very strong. The status of deafness is not regarded as > a disability. We have had great fortune to be surrounded with tremendous > deaf educators, deaf adults, deaf teens and deaf families. Their > determination and assertion of their potentials and abilities has been a > strong support for . He has always actively not identified with the > medical portions of his challenges. The one year he had to share a health > aide with two other children really aggravated him - he did not like that > grouping. One of the most loving and inspiring people we know is a deaf > adult mother of three thriving deaf children and an educator who has always > made it crystal clear that to succeed you must have pride in yourself and > *yes* you must master English in all forms better than any hearing person. > There is this very loving supportive no nonsense attitude she has that was > just the kick in the pants I needed. She is probably the single largest > catalyst I had in feeling that was the same as everyone else - he is a > person, doing his best - a deaf person, who must master English better than > any hearing person in all forms - spoken, expressive, receptive and written. > His medical issues, gross and fine motor issues became incidental > idiosyncrasies. She gave me the permission I hadn't given myself yet to see > as whole, not give a darn how anyone else saw him. She did this in > from the position of being one of the other moms of the children in that > deaf and hard of hearing grade level. She modeled this for me in her > interactions with her children, and in her interactions with . She > directed me (lovingly and directly) by unbunching my concerns without > belittling them. By affirming for me the whole person and tremendous > potential I saw in my son and demanding I stop at nothing until I open every > door and opportunity for him. She also gave me a whole list of things not > to feel sorry about - like not to feel sorry for how hard he must work - but > to be grateful that the work can be done. To not feel sorry that his > childhood is not " normal " - there is no normal, he is defining normal for > himself - this is normal - for him and our family. > > Harder though are the times when wants to be like everyone else. > Right now he'd like to be a bit taller. He'd like to be in puberty - > instead of so obviously pre-pubertal - especially as his classmates are > primarily all medically unremarkable thirteen and fourteen year olds. He'd > like to have one really good friend. He'd like to be a boy who would be > interesting to Lizzy McGuire/ Duff. > > Timmy is one very lucky boy - I just know you will find all the best > opporunitites for your darling boy. Even as you lament that " it's just not > fair " you have already turned this grain of sand into a pearl of opportunity > for your boy. > > I hope what I have shared was not too off or burdensome- > take good care - the best of care- > > yuka > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2003 Report Share Posted May 6, 2003 Yours is my first post read today. I am aching for you! We all know that feeling of wanting to stomp your feet and scream that it's not fair cuz we just want our kids to be like everyone else :-( I haven't read any responses yet. I'm sure there will be some thoughtful ones. I'm just in and out quick and wanted to send my hugs your way... Love Michele W Aubrie's mom timmy hi to everyone, I apologize in advance if I ramble or sound as if I feel sorry for myself, but after talking to Tim's previous speech therapist (she had him for 4 years) who also has hearing issues--some the same as tim's and has children with hearing issues, I, along with Pat don't feel our school district is giving Timmy what he needs. And, we are going to start exploring other avenues. Meaning a school for the deaf/hard of hearing. I am crying while writing this because, although I always knew it was going to be a possability that Timmy would not do well in the mainstream situation--I was so hoping it would all just work out. I JUST WANT HIM TO BE LIKE EVERYONE ELSE--I DON'T WANT THEM TO LOOK AT HIM AND WONDER WHAT IS WRONG--WHY HE WALKS LIKE THAT, TALKS LIKE THAT, WEARS A HEARING AIDE...... He tries SO hard, but he's not just like everyone else, and this school district is not doing the job to " fix " it. not that they can or should be expected to fix it, but they do not see the true timmy and ALL of his issues. And I doubt they ever will!!! so, I have already begun to research schools--anyone in NJ who knows of a good school let me know, the other problem is there are no schools that are close--about an hour give or take is the closest I can find--and the thought a residential school --just not an option. of course, I know this will be one of the biggest fights of my life, but this is my child we are talking about and he WILL get what he needs to be the best he can be!!! my other concern is what this will do to our already fragile family life---I tend to worry about every case senario--even though it may never happen and to top it all off I'm pms-ing!!! ok, I guess I've gone on enough--IT'S JUST NOT FAIR!!!! how's that for juvinile? have a good night everyone--and I apologize for going on and on and feeling oh so sorry for myself, I know it's not the end of the world--but it sure isn't paris--and holland is looking pretty crappy right now!!! maria and the guys --uncluding Pat who says don't worry it will all work out--my rock!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2003 Report Share Posted May 6, 2003 , I can say " I understand " because I have never been in your stiuation, but I can say that I understand a parent's pain. I've had plenty in 18 years of cHARGE. You are in my thoughts and prayers. Wanting what is best for Timmy needs no appology. Blessings and Hugs, Lynn Ohio > hi to everyone, I apologize in advance if I ramble or sound as if I feel sorry for myself, but after talking to Tim's previous speech therapist (she had him for 4 years) who also has hearing issues-- some the same as tim's and has children with hearing issues, I, along with Pat don't feel our school district is giving Timmy what he needs. And, we are going to start exploring other avenues. Meaning a school for the deaf/hard of hearing. I am crying while writing this because, although I always knew it was going to be a possability that Timmy would not do well in the mainstream situation- -I was so hoping it would all just work out. I JUST WANT HIM TO BE LIKE EVERYONE ELSE--I DON'T WANT THEM TO LOOK AT HIM AND WONDER WHAT IS WRONG--WHY HE WALKS LIKE THAT, TALKS LIKE THAT, WEARS A HEARING AIDE...... > > He tries SO hard, but he's not just like everyone else, and this school district is not doing the job to " fix " it. not that they can or should be expected to fix it, but they do not see the true timmy and ALL of his issues. And I doubt they ever will!!! > > so, I have already begun to research schools--anyone in NJ who knows of a good school let me know, the other problem is there are no schools that are close--about an hour give or take is the closest I can find--and the thought a residential school --just not an option. > > of course, I know this will be one of the biggest fights of my life, but this is my child we are talking about and he WILL get what he needs to be the best he can be!!! > > my other concern is what this will do to our already fragile family life---I tend to worry about every case senario--even though it may never happen and to top it all off I'm pms-ing!!! > ok, I guess I've gone on enough--IT'S JUST NOT FAIR!!!! how's that for juvinile? > > have a good night everyone--and I apologize for going on and on and feeling oh so sorry for myself, I know it's not the end of the world--but it sure isn't paris--and holland is looking pretty crappy right now!!! > > maria and the guys --uncluding Pat who says don't worry it will all work out--my rock!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 , I live in NJ and am going through the same thing you are... I have been searching for a school for my caitlin for years, can't find anything except very far away or extremely expensive and i honestly dont know what to do either. I feel your pain...right now i am going to look at a catholic school in philly that is for visually impaired, one hour away. don't know how i would even manage it but i am going to look anyway.. good luck i wish we could start our own special school in NJ kelly mom to caitlin 11 almost 12 Quote Link to comment Share on other sites More sharing options...
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