Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 thank you--much appreciated. maria Re: timmy > , > 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 7, 2003 Report Share Posted May 7, 2003 thank you---I need all the hugs I can get these days. maria 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 7, 2003 Report Share Posted May 7, 2003 Yuka, thank you, I have a hard time with the " Timmy " view because although he has issues, unless he's walking or talking or has his hearing aide in, he's just a cute little boy with glasses. And then you add the hearing aide--ok he has hearing issues, then he walks or you see the orthotics, he can't walk that well and he runs slow and funny, he has poor balance, and then if he talks, he stutters and asks a million and one questions and many over and over again until you want to scream. and he is the happiest (most of the time) and most social child, but doesn't always act correctly or like the other kids. But other than his ears, he's healthy and that's great. he is who he is, but the teachers and thearapists don't put all this together , along with being blind in one eye and the fine motor issues and sensory stuff, they don't see the big picture, and this is why I want something done now before he is just pushed through the system and then timmy suffers in the long run for being timmy. and I know that some things bother him like keegan and even liam being able to do things physically that he can't and maybe never will. and at one point, he was ahead of keegan academically and now keegan is catching up and this will soon be an issue too. so, we forge ahead and try to best for everyone involved. anyway, I feel better today--just knowing you are all there for me helps. I don't know if this makes since --I didn't have a whole lot of sleep last night. I do understand what you are trying to say, and thank you again. maria 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 7, 2003 Report Share Posted May 7, 2003 dont you dare apologize for that ......I m sure everyone of us feels this way a LOT more then we let on!!!!!!!!!!!!!!! mom to , 19 month old CHARGEr and 1 month who slept threw the night last night YES http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets http://community.webtv.net/maryechick12/birthdayboy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 thanks, , glad to hear your little one is sleeping through the night wish my two year old would, he's been having night terrors--and so have I!!!! maria Re: timmy > dont you dare apologize for that ......I m sure everyone of us feels > this way a LOT more then we let on!!!!!!!!!!!!!!! > mom to , 19 month old CHARGEr and 1 month who slept > threw the night last night YES > > http://community.webtv.net/maryechick12/ > http://community.webtv.net/maryechick12/pets > > http://community.webtv.net/maryechick12/birthdayboy > > > > 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 7, 2003 Report Share Posted May 7, 2003 , I understand totally...I know we all get that way when it comes to our kids in school. Some teachers are understanding and some don't care. I realize this is not a feasible answer, but would love to have Timmy in her class =) Her first grade teacher is moving with the class to second grade. One very positive situation for . Her teacher pushes her and has high expectations, but will listen to me and tries to accomodate as much as she can. Timmy and sound very similar and our interpreter would make sure he got a fair shake in class! Hugs to you and Timmy, 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 7, 2003 Report Share Posted May 7, 2003 I'm sure timmy would love to have in his class too. Are you going to the conference? maria 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 7, 2003 Report Share Posted May 7, 2003 The conference is still in the maybe stage. We have a wedding in August in Oregon, so I don't know if I can do both. I am trying to work it out with Sheryl D. Right, Sheryl???? 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 7, 2003 Report Share Posted May 7, 2003 Where do you live? hope it works out! maria 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 7, 2003 Report Share Posted May 7, 2003 Iowa...not bad to drive, but funds are another issue. kginn 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 7, 2003 Report Share Posted May 7, 2003 Where in Iowa? i'm originally from Kansas--know the funds issue. the boys and I are driving to see family in KS in june --pat is staying to work, so we can do the july thing. Will not be a very enjoyable drive alone, but the only way we can do it and see everyone--it's been since last summer. need to see great g-ma and the rest too. maria 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 7, 2003 Report Share Posted May 7, 2003 Eastern Iowa. Not too far from Cedar Rapids or Iowa City. Mo goes to the Drs. at University of Iowa. kginn 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 8, 2003 Report Share Posted May 8, 2003 Hi , I went to a residential school for the blind from first grade through twelfth. My parents lived about 25 miles from the school so they moved to town and my dad traveled the 50 miles round trip a day himself to work. So I lived at home instead of in the dorm at school. Could you move like halfway there and make it closer for timmy? Kay She who laughs.... LASTS 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 9, 2003 Report Share Posted May 9, 2003 i , I understand how that is! Kay She who laughs.... LASTS 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 9, 2003 Report Share Posted May 9, 2003 , There is so much I wish to say that would bring some sort of comfort, but who knows really? Honestly our life has been very stressful from the beginning. And it has been incredibly joyful. There have been so many ups and downs other parents don't have to go through, so many decisions to make. One of the biggest and best things that happened here for Pat's education was when she finally received services from deaf/blind. Are you hooked up with anyone in your state? Do they know of CHARGE? Whatever decisions you make, hooking up with a deaf/blind consultant is something drastically important. When you are looking at things remember that you really can't separate one from the other and the combination impacts the students education, and everything else. Not only that, you have to find a situation where they understand the other issues as well, including the ever changing health and attention problems. Have you tried searching D/B Link? Some educators and physicians used to think I wanted them to " fix it " as well. That isn't true, I just wanted them to UNDERSTAND her. There is that difference. I really rejoice in Patty. She is such a wonderful person. She is my hero. So is a. CHARGE is only a label for her, but it doesn't identify her. She is a person who tries hard at all she does, has a great sense of humor, is a compassionate individual, is often lazy ... and... If people see her for her disabilities then they are individuals who are not worth knowing. We all have something unique about us, but each and every person on the face of this world is someone to celebrate in. BUT, Because Pat HAS CHARGE the way to educate her, provide learning experiences is different from the " norm. " How far she gets, what she learns, isn't going to be the " norm " either, but it is a heck of a lot higher than anyone would ever say she could in the beginning. By the way, Inclusion programs or mainstream programs, or whatever, are only words. Some may be absolutely wonderful while others may be harmful. It depends on the program itself. Some Inclusionary classes aren't really Inclusionary at all. Some contained classes may in fact be better than the mainstream. It depends on the educator, the philosophy of the district, the administrators, and especially MONEY. Figure out what Timmy needs and go from there. Oh, and by the way, a speech language pathologist is not a specialist in servicing those who are deaf. I think they only have about three to five courses in college. So, you can have both a S.L.P. and an educator for the deaf servicing your child. If they don't have that in your district that doesn't matter. They have to provide what your child needs. They HAVE TO! Also, it has been our experience that she doesn't fit into the deaf culture either. She doesn't sign well and that may be it, but I also know she doesn't fit because she isn't just deaf. Be prepared that might happen as well. It might not, but it might. You know, people look at Patty too and wonder what is wrong, but for the life of me I can't figure out why. I think if she were in a wheelchair, she would get looked at less maybe. It does bother her, but she has such a great sense of self worth and confidence she can get by it. It's hard, but it is something she is able to get through. What makes her upset more is the people who know of her and make her " disabled. " I also wanted to remark about the " fragile " family life. Oh my, been there, done that! It was harder when Pat was little because we were the working poor. used to work SO hard and feel he wasn't doing enough-we didn't have insurance!!! And then there were so many outside forces which could be trying on our relationship, if we let them, which were and are mostly the stresses of all the decisions we had to make about Pat's life and the jerks we had to deal with. also handled Patty's surgeries and health problems differently than I did, but I learned early that the point is he did handle them! Delegating responsibility also used to be hard for me in the beginning, not any more though! I felt it was my responsibility to make everything all right, to keep my children safe. I can't and I never will. I just do my best and that's OK. You are a wonderful mother who is doing your best, and that's OK. is the most marvelous father and husband there could be, but he was different because he's a man, and I had to acknowledge that. He can still frustrate me, but I frustrate him too. We just come at things from a different direction. He also doesn't care if there are dishes in the sink or socks on the floor. I have also realized if he empties the dishwasher that's great even if he doesn't put them away correctly, or doesn't separate the clothes the way I do. He tries. Sometimes I have to ask him to, but he tries. We made it through the worse and our bond is so much stronger. Counseling here and there helped too! Oh, and so did our realizing that each of us experience things in our own way and can have different feelings, and that's OK, but together we are a team. We have to constantly communicate. We love our children but each other comes first. With that then we can do our best for our children. I really feel for you at this time. We are going through Pat's transition now. So many decisions, so many things to do. It is hard. It is tiring, but in the long run, what will be, will be. You all will end up-?- happy. You'll see. Just take one day at a time. Give yourself a break every now and then. I wish you all the best. Hey, isn't one of the greatest things to happen is to find others like ourselves? You are not alone. Take care, Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2003 Report Share Posted May 9, 2003 Bonnie--the first thing I want to say is I want to be just like you when I grow up!!! you always make me feel better and see things differently than before--thank you !!! we do recieve services from the commission of blind and visually impaired and also NJ tech. assistance program, and they both help alot. My biggest issue with this school district is they THINK they can serve every child, but they can't. and it's a poor district so, there are more to serve--unfortunately. the speech therapist is just that a speech therapist--she doesn't know about the deaf side of it or the blind side --to be honest I'm not sure what she knows--that's how little she impress me. I am not a mean person--I always try to find something good in everyone, and she is a nice person, but not the right one to be working with my child. our family life is walking a fine line finacially and that adds great stress--but there are certain things I won't give up for the sake of our family--some way it will all work out. I have just accepted the fact we will always being paying down some debt---and I won't be living in a $400,000 dollar house or for that matter a $200,000 house. But still, we make too much money for assistance--they don't see all the underlying bills just the income. anyway, I just have to hope we can find the best for timmy and that the fight to get it won't be too bad. And in the long run we find a happy medium for all of us. and that keegan doesn't feel more dislike or whatever it is he has for Timmy. maybe it's just simple sibling rivalry--I was an only child, so I nevere experienced any of this. anyway again I'm a Bonnie wanna be--thanks. maria Re: timmy > , > > There is so much I wish to say that would bring some sort of comfort, > but who knows really? Honestly our life has been very stressful from the > beginning. And it has been incredibly joyful. There have been so many ups > and downs other parents don't have to go through, so many decisions to make. > One of the biggest and best things that happened here for Pat's education was > when she finally received services from deaf/blind. Are you hooked up with > anyone in your state? Do they know of CHARGE? Whatever decisions you make, > hooking up with a deaf/blind consultant is something drastically important. > When you are looking at things remember that you really can't separate one > from the other and the combination impacts the students education, and > everything else. Not only that, you have to find a situation where they > understand the other issues as well, including the ever changing health and > attention problems. Have you tried searching D/B Link? > Some educators and physicians used to think I wanted them to " fix it " > as well. That isn't true, I just wanted them to UNDERSTAND her. There is > that difference. I really rejoice in Patty. She is such a wonderful person. > She is my hero. So is a. CHARGE is only a label for her, but it > doesn't identify her. She is a person who tries hard at all she does, has a > great sense of humor, is a compassionate individual, is often lazy ... and... > If people see her for her disabilities then they are individuals who are not > worth knowing. We all have something unique about us, but each and every > person on the face of this world is someone to celebrate in. BUT, Because > Pat HAS CHARGE the way to educate her, provide learning experiences is > different from the " norm. " How far she gets, what she learns, isn't going to > be the " norm " either, but it is a heck of a lot higher than anyone would ever > say she could in the beginning. > By the way, Inclusion programs or mainstream programs, or whatever, > are only words. Some may be absolutely wonderful while others may be > harmful. It depends on the program itself. Some Inclusionary classes aren't > really Inclusionary at all. Some contained classes may in fact be better > than the mainstream. It depends on the educator, the philosophy of the > district, the administrators, and especially MONEY. Figure out what Timmy > needs and go from there. Oh, and by the way, a speech language pathologist > is not a specialist in servicing those who are deaf. I think they only have > about three to five courses in college. So, you can have both a S.L.P. and > an educator for the deaf servicing your child. If they don't have that in > your district that doesn't matter. They have to provide what your child > needs. They HAVE TO! > Also, it has been our experience that she doesn't fit into the deaf > culture either. She doesn't sign well and that may be it, but I also know > she doesn't fit because she isn't just deaf. Be prepared that might happen > as well. It might not, but it might. > You know, people look at Patty too and wonder what is wrong, but for > the life of me I can't figure out why. I think if she were in a wheelchair, > she would get looked at less maybe. It does bother her, but she has such a > great sense of self worth and confidence she can get by it. It's hard, but > it is something she is able to get through. What makes her upset more is the > people who know of her and make her " disabled. " > I also wanted to remark about the " fragile " family life. Oh my, been > there, done that! It was harder when Pat was little because we were the > working poor. used to work SO hard and feel he wasn't doing enough-we > didn't have insurance!!! And then there were so many outside forces which > could be trying on our relationship, if we let them, which were and are > mostly the stresses of all the decisions we had to make about Pat's life and > the jerks we had to deal with. also handled Patty's surgeries and > health problems differently than I did, but I learned early that the point is > he did handle them! Delegating responsibility also used to be hard for me in > the beginning, not any more though! I felt it was my responsibility to make > everything all right, to keep my children safe. I can't and I never will. I > just do my best and that's OK. You are a wonderful mother who is doing your > best, and that's OK. > is the most marvelous father and husband there could be, but he > was different because he's a man, and I had to acknowledge that. He can > still frustrate me, but I frustrate him too. We just come at things from a > different direction. He also doesn't care if there are dishes in the sink or > socks on the floor. I have also realized if he empties the dishwasher that's > great even if he doesn't put them away correctly, or doesn't separate the > clothes the way I do. He tries. Sometimes I have to ask him to, but he > tries. We made it through the worse and our bond is so much stronger. > Counseling here and there helped too! Oh, and so did our realizing that each > of us experience things in our own way and can have different feelings, and > that's OK, but together we are a team. We have to constantly communicate. > We love our children but each other comes first. With that then we can do > our best for our children. > I really feel for you at this time. We are going through Pat's > transition now. So many decisions, so many things to do. It is hard. It is > tiring, but in the long run, what will be, will be. You all will end up-?- > happy. You'll see. Just take one day at a time. Give yourself a break > every now and then. I wish you all the best. > Hey, isn't one of the greatest things to happen is to find others like > ourselves? You are not alone. > > Take care, > Bonnie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 , I must have missed the post about Timmy and reading. It is always important to remember that hearing and reading go together. I don't know what is happening but sounds like you are worried. And then don't forget there may be other things that can impact learning because of CHARGE such as attention difficulties, health issues, visual difficulties... It all goes together. That fact he is doing so well already shows he is an extremely bright young man. Also it was important for Patty to have summer school. Patty often lost much when she didn't use a particular skill. The words you need to use at the meeting is " extended school year. " Not only does that include summer school but if the child needs tutoring or whatever after school, there are ways to get that if appropriate. So, you going to the conference? See you there! Bonnie Quote Link to comment Share on other sites More sharing options...
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