Guest guest Posted September 30, 2010 Report Share Posted September 30, 2010 Hi , That sounds right to me..... We've never seen our ortho between cast changes. We also experience some redness and chafing around the cutouts and on the hips too. Hang in there..... - Noelle's mommy, 3 1/2 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and currently in cast 9reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III From: shannonclune <shannonclune@...>Subject: frustratedinfantile scoliosis treatment Date: Wednesday, September 29, 2010, 10:34 PM Hi!I was just wondering what the typical protocol was for casting. I feel like we are being a little neglected. He was casted in mid July (first cast) and he has not been checked by his orthopedic doctor since then. The doctor wanted to have xrays in September but when I called about it his assistant just said to wait until his October 14th appointment. I just hope everything is ok. I have taken him to his pediatrician but this is his first patient with a cast like this so I feel like I am on my own with this one. He has been having sores on his hips and I just want to make sure he has not outgrown his cast, if that is possible. I appreciate any input you all may have!Thanks, Clunen's mom, 1st cast Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2010 Report Share Posted October 2, 2010 Interesting. I went to pt 2x a week for 1 hour each time.......and with pushing it, they get maybe a hundred to 102 or so..........by myself 94. The surgeon sent me back into therapy and after 2 more months of it, same numbers. I also feel funny walking steps. I also have weird feeling in my knee. I think it is still scar tissue. I keep bending it and working it and am going to work out on the Nu step machine and making it work a few times a week.. it seems to be loosening that knee. I had surgery Oct 14-09 so am out 1 year. I am not happy with the knee and how it bends but it is what it is and I can walk now and am not in pain 24/7. I guess this is my new normal. Sometimes we can't do what we can't do. I do lay at night with my other leg over my knee pushing it straight. I do stretches and I walk and I do that Nu step and other machines at the wellness center and little by little still, it seems more and more normal but for me, it has been like forever and I also am surprised at how resistant this has been. The therapists tell me that as bad as my knee was, might be the reason.....and they figure they have done all they can too. dash Frustrated Hey All, Well, I am 10 weeks post op from my bilateral TKR. I have been going to PT 3 times a week and I am there for 2 1/2 hours each visit. I do everything they say and then some. I am using heavy weights and working very hard. Overall, I think I am doing well all things considered. However, I had my range of motion measured and things were not as good as I expected. My left knee is okay in general - about 5 to 120 (pushing it). My right knee however is only 10 to 105 degrees! I lie on my stomach with 5 pound weights and do all of the stretches to get it straight. I know my surgeon said that between weeks 8-12 post op, one will get about as far as one is going to get. So does this mean I may never really get full extension - or even close??? It does not feel that bent. I am walking fairly well. I only use a cane when I do a lot of walking. I do stairs " normally " . The only real discomfort I feel is a tightness in the front left side of my left knee (mainly on stairs) and a weird feeling in the back of my right knee on occasion. My therapist figures I will only be going to PT another couple of weeks. I see my surgeon on Oct. 8, so that will be the deciding factor. I can practically hear him lecture me now thinking I have not done enough to get the knee straight. in PA Bilateral TKR - 7/22/2010 Left THR - 7/2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2011 Report Share Posted March 12, 2011 I would take her to the E.R. at a Children's hospital. nn (mom to , 9, systemic JIA) > > I am getting so frustrated. My daughter is doing terribly today, and we still have to wait 11 more days to see the rheumatologist. I think this is the worst day yet since she started having this severe joint pain and fatigue a month ago. Her internist started her on storoids hoping that would tide her over until her appointment, but they haven't helped at all. She just can't continue with this pain and fatigue. She hasn't left her bed today. I am even thinking of taking her to the E.R. so somebody can do something! It is horrible for a parent to see their child suffering and feel so helpless! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2011 Report Share Posted March 12, 2011 I agree , I would take her to the ER too ... it is horrible to see your child suffer like that ...I hope they will do something for her. Keep us posted . ( mom to Sophie 6 yrs, JIA) > > > > I am getting so frustrated. My daughter is doing terribly today, and we still have to wait 11 more days to see the rheumatologist. I think this is the worst day yet since she started having this severe joint pain and fatigue a month ago. Her internist started her on storoids hoping that would tide her over until her appointment, but they haven't helped at all. She just can't continue with this pain and fatigue. She hasn't left her bed today. I am even thinking of taking her to the E.R. so somebody can do something! It is horrible for a parent to see their child suffering and feel so helpless! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2011 Report Share Posted March 12, 2011 That is just awful. I'd go to the ER if the steroids don't kick in very soon. Audra > > I am getting so frustrated. My daughter is doing terribly today, and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 I hope you know that if your son has a behavior plan and his offenses are due to his disability he cannot be suspended. Ask for an FBA or FAA right away. Good luckSent via DROID on Verizon Wireless Frustrated Another trip to the dr. to get a note for school. The medications my son is taking is making him worse. I feel like banging my head against the wall. Seems the school has no sympathy what so ever for the plight Iam enduring. I am trying to do what is best for my child. He was suspended on friday and monday for him hitting someone else. Friday we noticed he had bruises on his upper arm where someone has grabbed him, no one admits to anything. I guess Im out of my mind and making all this up. Maybe it is easier for them to build enough offenses against him to get him out of that school so they don't have to deal with him anymore. I feel like taking the coward way out and pulling him from the school but I know that he needs the interaction /education. If I'm frustrated I know he has to be as well. His teacher called yesterday to inform me of a meeting on Thursday with a behavioral specialist and my mother and I were at Busch Gardens with my son. The teacher acted like how dare I take my son there when he is suspended from school!!! I was by no means rewarding him, his punishment was taking away his video games. I can't withhold everything and not have any fun with him or we would never do anything with the way things are. I love my child unconditional and would move mountains for him. If the school system can not handle children with AS then make a school just for them. The school has another thing coming if they think I will lay down and let them send my son to a school with " mean bullies " .Sorry for ranting I just needed somewhere to let off some steam.Frustrated in Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 So sorry to hear of your ordeal. So familiar. Our son was recently recommended for expulsion, it was so unreal. Eventually with an advocate we were able to get them to not expell him, but I decided that the bullying and the constant stress of the other shoe dropping was too much...so we are homeschooling him for at least the next year 6 and 7 th grade and probably beyond until we figure out how to pay for a private school we'd like to try. I just couldn't hack the stress anymore, and homeschooling him has been good for us. I just met a woman who was thinking she wouldn't be able to homeschool, as her son has so much anxiety about the work etc...turns out she was trying to do what they do in school, even using their textbooks from when he was in school. I had her come over and look at my curricullum that usually we can get it done by lunchtime if he applies himself and it isn't nearly as much work as she would think. For my kid, small chunks of each subject are best. So he does a page on spelling a day, a couple pages of grammar exercises (basically, like placing apostrophes or quotes in the reading material provided) he does a math lesson a day (Saxon math), reads and studies some science (maybe 20 minutes) , reading comprension read the story monday, answer one page of questions tues, the next page wed, pick out a short related project (like write a letter to a missionary or a relative) and finish up the project on friday. He does a little world culture each day, about 15 minutes of reading and I have him take notes now on the computer to help him better retain the info...then if we have energy and time we may do his faith workbooks or a little of an elective, but I don't stress it if he doesn't...so my new friend was so relieved that she didn't have to do what he was doing in the actual school and could tailor it to his needs.... But i am not going to say everyone should homeschool, my other three aren't for now...but don't lose hope, and you are doing what is right for YOUR child no matter what! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 Hi, I have to totally agree with on everything, especially the last line of her post (; We ended up pulling our son out of school as well. The bullying/teasing/rejection of the kids was causing too much stress and anxiety for him as well as my husband and I. We're starting an online school this week so I can't give any advice as far as that goes, but he is already so much more relaxed and so much happier that I know we did the right thing by pulling him out. No matter what you end up doing, I wish you luck. Re: Frustrated So sorry to hear of your ordeal. So familiar. Our son was recently recommended for expulsion, it was so unreal. Eventually with an advocate we were able to get them to not expell him, but I decided that the bullying and the constant stress of the other shoe dropping was too much...so we are homeschooling him for at least the next year 6 and 7 th grade and probably beyond until we figure out how to pay for a private school we'd like to try. I just couldn't hack the stress anymore, and homeschooling him has been good for us. I just met a woman who was thinking she wouldn't be able to homeschool, as her son has so much anxiety about the work etc...turns out she was trying to do what they do in school, even using their textbooks from when he was in school. I had her come over and look at my curricullum that usually we can get it done by lunchtime if he applies himself and it isn't nearly as much work as she would think. For my kid, small chunks of each subject are best. So he does a page on spelling a day, a couple pages of grammar exercises (basically, like placing apostrophes or quotes in the reading material provided) he does a math lesson a day (Saxon math), reads and studies some science (maybe 20 minutes) , reading comprension read the story monday, answer one page of questions tues, the next page wed, pick out a short related project (like write a letter to a missionary or a relative) and finish up the project on friday. He does a little world culture each day, about 15 minutes of reading and I have him take notes now on the computer to help him better retain the info...then if we have energy and time we may do his faith workbooks or a little of an elective, but I don't stress it if he doesn't...so my new friend was so relieved that she didn't have to do what he was doing in the actual school and could tailor it to his needs.... But i am not going to say everyone should homeschool, my other three aren't for now...but don't lose hope, and you are doing what is right for YOUR child no matter what! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 My son goes to a small private Christian school for LD kids in Plano, TX. It has been a huge lifesaver!! As a Mom there isn't a better feeling then being able to drop off your child at school and not worry about them while they are there. He feels " normal " , loved, secure, and accepted, it's amazing!! There needs to be more schools out there like the one my son goes to. Kim 9 yr old son Bi-Polar, Aspergers, Tourettes, ADHD Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 Just a though on the private schools. Most of them offer financial assistance that is income-based so it is worth asking and maybe applying. Some of them don't advertise that they offer assistance. You might be able to afford it sooner than you think. From: Clement <ddclement@...>Autism and Aspergers Treatment Sent: Tue, March 29, 2011 8:12:01 PMSubject: Re: Frustrated So sorry to hear of your ordeal. So familiar. Our son was recently recommended for expulsion, it was so unreal. Eventually with an advocate we were able to get them to not expell him, but I decided that the bullying and the constant stress of the other shoe dropping was too much...so we are homeschooling him for at least the next year 6 and 7 th grade and probably beyond until we figure out how to pay for a private school we'd like to try. I just couldn't hack the stress anymore, and homeschooling him has been good for us. I just met a woman who was thinking she wouldn't be able to homeschool, as her son has so much anxiety about the work etc...turns out she was trying to do what they do in school, even using their textbooks from when he was in school. I had her come over and look at my curricullum that usually we can get it done by lunchtime if he applies himself and it isn't nearly as much work as she would think. For my kid, small chunks of each subject are best. So he does a page on spelling a day, a couple pages of grammar exercises (basically, like placing apostrophes or quotes in the reading material provided) he does a math lesson a day (Saxon math), reads and studies some science (maybe 20 minutes) , reading comprension read the story monday, answer one page of questions tues, the next page wed, pick out a short related project (like write a letter to a missionary or a relative) and finish up the project on friday. He does a little world culture each day, about 15 minutes of reading and I have him take notes now on the computer to help him better retain the info...then if we have energy and time we may do his faith workbooks or a little of an elective, but I don't stress it if he doesn't...so my new friend was so relieved that she didn't have to do what he was doing in the actual school and could tailor it to his needs.... But i am not going to say everyone should ! homeschool, my other three aren't for now...but don't lose hope, and you are doing what is right for YOUR child no matter what! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 We thought a lot about home schooling, I even checked in to the online. I really wasn't sure I would be able to do it. Our little girl got made fun of in kindergarten and first grade so we struggled for the first 2 years. This year, for some reason she seems to be doing really well with the kids. We've talked about it and if later down the road, as she gets older, if she starts to get bullied we'll pull her out. I won't have that for her. It's hard enough having to do all the work, but have other kids causing more anxiety just won't work. I don't blame those of you that have took your kids out. It's just a must in certain situations. ~ In a message dated 3/29/2011 9:31:13 P.M. Eastern Daylight Time, bergmcj@... writes: Hi, I have to totally agree with on everything, especially the last line of her post (; We ended up pulling our son out of school as well. The bullying/teasing/rejection of the kids was causing too much stress and anxiety for him as well as my husband and I. We're starting an online school this week so I can't give any advice as far as that goes, but he is already so much more relaxed and so much happier that I know we did the right thing by pulling him out. No matter what you end up doing, I wish you luck. Re: Frustrated So sorry to hear of your ordeal. So familiar. Our son was recently recommended for expulsion, it was so unreal. Eventually with an advocate we were able to get them to not expell him, but I decided that the bullying and the constant stress of the other shoe dropping was too much...so we are homeschooling him for at least the next year 6 and 7 th grade and probably beyond until we figure out how to pay for a private school we'd like to try. I just couldn't hack the stress anymore, and homeschooling him has been good for us. I just met a woman who was thinking she wouldn't be able to homeschool, as her son has so much anxiety about the work etc...turns out she was trying to do what they do in school, even using their textbooks from when he was in school. I had her come over and look at my curricullum that usually we can get it done by lunchtime if he applies himself and it isn't nearly as much work as sh e would think. For my kid, small chunks of each subject are best. So he does a page on spelling a day, a couple pages of grammar exercises (basically, like placing apostrophes or quotes in the reading material provided) he does a math lesson a day (Saxon math), reads and studies some science (maybe 20 minutes) , reading comprension read the story monday, answer one page of questions tues, the next page wed, pick out a short related project (like write a letter to a missionary or a relative) and finish up the project on friday. He does a little world culture each day, about 15 minutes of reading and I have him take notes now on the computer to help him better retain the info...then if we have energy and time we may do his faith workbooks or a little of an elective, but I don't stress it if he doesn't...so my new friend was so relieved that she didn't have to do what he was doing in the actual school and could tailor it to his needs.... But i am not going to say everyone should homeschool, my other three aren't for now...but don't lose hope, and you are doing what is right for YOUR child no matter what! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 I checked into that and they wanted $400 a month. In a message dated 3/29/2011 11:36:47 P.M. Eastern Daylight Time, lisa_littrell@... writes: Just a though on the private schools. Most of them offer financial assistance that is income-based so it is worth asking and maybe applying. Some of them don't advertise that they offer assistance. You might be able to afford it sooner than you think. From: Clement <ddclement@...>Autism and Aspergers Treatment Sent: Tue, March 29, 2011 8:12:01 PMSubject: Re: Frustrated So sorry to hear of your ordeal. So familiar. Our son was recently recommended for expulsion, it was so unreal. Eventually with an advocate we were able to get them to not expell him, but I decided that the bullying and the constant stress of the other shoe dropping was too much...so we are homeschooling him for at least the next year 6 and 7 th grade and probably beyond until we figure out how to pay for a private school we'd like to try. I just couldn't hack the stress anymore, and homeschooling him has been good for us. I just met a woman who was thinking she wouldn't be able to homeschool, as her son has so much anxiety about the work etc...turns out she was trying to do what they do in school, even using their textbooks from when he was in school. I had her come over and look at my curricullum that usually we can get it done by lunchtime if he applies himself and it isn't nearly as much work as she would think. For my kid, small chunks of each subject are best. So he does a page on spelling a day, a couple pages of grammar exercises (basically, like placing apostrophes or quotes in the reading material provided) he does a math lesson a day (Saxon math), reads and studies some science (maybe 20 minutes) , reading comprension read the story monday, answer one page of questions tues, the next page wed, pick out a short related project (like write a letter to a missionary or a relative) and finish up the project on friday. He does a little world culture each day, about 15 minutes of reading and I have him take notes now on the computer to help him better retain the info...then if we have energy and time we may do his faith workbooks or a little of an elective, but I don't stress it if he doesn't...so my new friend was so relieved that she didn't have to do what he was doing in the actual school and could tailor it to his needs.... But i am not going to say everyone should ! homeschool, my other three aren't for now...but don't lose hope, and you are doing what is right for YOUR child no matter what! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 That line brought tears to my eyes,that's all I want.Normal,loved,secure and accepted. > > My son goes to a small private Christian school for LD kids in Plano, TX. It has been a huge lifesaver!! As a Mom there isn't a better feeling then being able to drop off your child at school and not worry about them while they are there. He feels " normal " , loved, secure, and accepted, it's amazing!! > > There needs to be more schools out there like the one my son goes to. > > Kim > 9 yr old son Bi-Polar, Aspergers, Tourettes, ADHD > > Sent from my iPhone > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 We too have had similar difficulties with school. The key for us was turning it all back on them stating that if they had provided what was necessary in the first place to meet his needs none of this would have happened. It took a disability rights advocate, myself, my son's senior in home therapist, and social worker for his waiver to all convince the school of this, but since I had been asking for services for three years to accomodate his needs, and documenting all the horrible things that had happened along the way, they knew they could not go from not helping him much at all to expulsion or least restrictive environment, which is what they tried to do. He still has his days but once some intensive services were put in place, he improved greatly and is now pretty stable at school. You have to convince them that they are violating his rights to a free and appropriate public eduation by expelling him and that their neglect is the reason he is having such a horrible time at school in the first place. You have to be confident and get as many people to show up to those meetings as you can so you have as many people in the room on your side as they do. Mine stabbed a girl in the neck with a pencil because she got too close to him in the hallway at locker time ( he was in first grade). Thankfully she was not severely injured and she healed okay and the parents were very understanding. I explained to the school and district professionals that I had been asking, begging and pleading for more help for years because I wanted to avoid this very type of problem and that I expected them to do what he needed now. The severity of what he did in tandem with the ultimate frustration of the principal, who was completely overwhelmed with what to do for a child like my son, finally got the district to see it my way. Granted they do not do everything he needs all the time, but they do so much more and he has made so much more progress. I think we all have to find our way through this maze and homeshooling works for some, but I am a single mom and have to support a household, in addition to the fact that he and I need a break from each other during the day. Hhe can be dwonright abusive to me at times and if he were to do that to me all day long and every piece of work was a battle, I could not get through that. He needs structure and I want him to learn how to socialize with other kids and to learn from observing the other kids. I feel like homeschooling for us, anyways would be a lose, lose situation. I think the schools get that if you get frustrated maybe they can get you to take on the burden of educating your child and take the burden off themselves to do their job. That is what I have seen here anyways. They deny , deny, deny, and try to push the parents to do everything. So many of my friends have just given up and pulled their kids out of school. ( One of whom has 8 children ages 1-14, and 2 with Autism disorders.) Then if the parent pushes back they get something, but not much, if they push back more they more than they started with, and eventually when the parent loses all patience and gets a bunch of people involved and makes the school look absolutely negligent, then they do what they should have done in the first place. It helps when you go straight to the top of the food chain as well. I went ot the superintendent and put every person under teh spotllight that had denied my son help. I made no friends and I did not aplogize for it. My son needed help and I was just exhausted from trying to be reasonable for 3 years. Of course within this system there are some really good professionals and then there are some just there to get their paycheck and look good to their boss and watch the bottom line. It is the really good professionals you needs to search out and find out all the inside information that the others will not share, because that inside information is what will most likely help tip the scales in your favor. It can be an exhaustive effort and truthfully who knows if it will all be worth it until we get through this system, but not having the oney to afford a private school and none within 75 miles that offer the kind fo help my son needs anyways, and me not having the aptitude or strength to homeschool him, I pray that what we are doing is enough. So far I am impressed with his progress and with the ways he is benefittign from a school environment. Eventually they put him in a district school that is not our home school but has a lot more resources and staff trained to handle kids like him, as well as a back up room for emotionallu behaviroally distrubed kids if he is having a very bad day. To date they have never had to send him there and he has been at this school just about a year now. I have not once been called to pick him up and he has not once been suspended (or expelled ) either at this school. They bus him there and to child care. They write us daily reports, and he is in a regular class with aides at lunch and recess and goes to a friend group and has private social skills sessions with the social worker. He gets behavioral intervention and special education teacher to help him with organization and executive functioning. It is not perfect, but he has had about 10 episodes of violence this school year that have resulted in getting sent to the office to relfect and calm down, but nothing more than that. I hope for zero some day but right now, compared to the daily suspensions, thrwoing desks in the classroom, three stack restraints, being called to come pick him up, etc, this is a vast improvement. The school had to make the right changes for him to be successful. We had to force them into seeing that though, they were not coming to it on their own. They woudl always say maybe it is not the right medication or dosage or something. And at times maybe it was partly medication, but the majority of the time was that they did not have the right system in place to manage his needs. Best of luck to you! It is a very hard situation. From: Clement <ddclement@...>Autism and Aspergers Treatment Sent: Tue, March 29, 2011 8:12:01 PMSubject: Re: Frustrated So sorry to hear of your ordeal. So familiar. Our son was recently recommended for expulsion, it was so unreal. Eventually with an advocate we were able to get them to not expell him, but I decided that the bullying and the constant stress of the other shoe dropping was too much...so we are homeschooling him for at least the next year 6 and 7 th grade and probably beyond until we figure out how to pay for a private school we'd like to try. I just couldn't hack the stress anymore, and homeschooling him has been good for us. I just met a woman who was thinking she wouldn't be able to homeschool, as her son has so much anxiety about the work etc...turns out she was trying to do what they do in school, even using their textbooks from when he was in school. I had her come over and look at my curricullum that usually we can get it done by lunchtime if he applies himself and it isn't nearly as much work as she would think. For my kid, small chunks of each subject are best. So he does a page on spelling a day, a couple pages of grammar exercises (basically, like placing apostrophes or quotes in the reading material provided) he does a math lesson a day (Saxon math), reads and studies some science (maybe 20 minutes) , reading comprension read the story monday, answer one page of questions tues, the next page wed, pick out a short related project (like write a letter to a missionary or a relative) and finish up the project on friday. He does a little world culture each day, about 15 minutes of reading and I have him take notes now on the computer to help him better retain the info...then if we have energy and time we may do his faith workbooks or a little of an elective, but I don't stress it if he doesn't...so my new friend was so relieved that she didn't have to do what he was doing in the actual school and could tailor it to his needs.... But i am not going to say everyone should homeschool, my other three aren't for now...but don't lose hope, and you are doing what is right for YOUR child no matter what! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 I have a meeting on Thurs with a behavioral specialist. This is all so new to me. Thank you for letting me know. I think I need an advocate to help me out. My son has been suspended 5 or 6 times already. He was getting Saturday school but the dean said it wasn't an option anymore because they can't deal with him. Does it ever feel like your submerged under water with only a straw to suck air through?? lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2011 Report Share Posted March 31, 2011 I've never posted to this list, but I am so angry about sad situation with your son's school I am breaking my silence. I also had a terrible time getting my son's school to make appropriate accommodations. They applied really inappropriate disciplinary actions and mislead me on their activities. It was awful, and my son was so unhappy during this time, really, really depressed. I'm thinking that maybe telling you what I did to finally get my son's school to work with us will give you some ideas.1. When things aren't going well, I called for IEP meetings very frequently to have the school team give me updates. For about a year and a half I called for an IEP meeting every other week, which included all my son's teachers, the school counselors, spec ed teachers, and principal. I also included the district student services principal and district psychologist. Yes, every other week with all those people. I also brought along my son's BSC, and sometimes other support staff. If they thought the accommodations were expensive, they could add up the cost in terms of their time for not making accomodations.2. Bring a laptop to every meeting and document what is said. Ask a lot of questions and take really good notes. Like if they are talking about letting my son take a break when he starts to get angry or frustrated, I'd ask them to give me a step by step description of what that meant. How did they know he was getting frustrated? Where would he go for this break? How long was it? Seeing me type all this up made them very aware that I was holding them accountable. Then at the next IEP meeting, I'd ask for a follow up on this- how often did he take breaks, how often did they miss his escalating, how was the re-entry after his breaks, etc.Good luck!! Reggi Levinreggi@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2011 Report Share Posted March 31, 2011 This is great Reggi. Very impressive. Francine Speak with Him Thou for He hearest. Spirit with Spirit can speak. Closer is Love than breathing, Nearer than hands and feet. (with appreciation for Tennyson) re: frustrated I've never posted to this list, but I am so angry about sad situation with your son's school I am breaking my silence. I also had a terrible time getting my son's school to make appropriate accommodations. They applied really inappropriate disciplinary actions and mislead me on their activities. It was awful, and my son was so unhappy during this time, really, really depressed. I'm thinking that maybe telling you what I did to finally get my son's school to work with us will give you some ideas. 1. When things aren't going well, I called for IEP meetings very frequently to have the school team give me updates. For about a year and a half I called for an IEP meeting every other week, which included all my son's teachers, the school counselors, spec ed teachers, and principal. I also included the district student services principal and district psychologist. Yes, every other week with all those people. I also brought along my son's BSC, and sometimes other support staff. If they thought the accommodations were expensive, they could add up the cost in terms of their time for not making accomodations. 2. Bring a laptop to every meeting and document what is said. Ask a lot of questions and take really good notes. Like if they are talking about letting my son take a break when he starts to get angry or frustrated, I'd ask them to give me a step by step description of what that meant. How did they know he was getting frustrated? Where would he go for this break? How long was it? Seeing me type all this up made them very aware that I was holding them accountable. Then at the next IEP meeting, I'd ask for a follow up on this- how often did he take breaks, how often did they miss his escalating, how was the re-entry after his breaks, etc. Good luck!! Reggi Levin reggi@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2011 Report Share Posted March 31, 2011 Thank you Reggi for the reply and advice. I'm heading to school now for another IEP meeting.I will keep in mind all that you have said. I so wish I could go back to bed and hide under the covers but I know I have to do this. I just hate the way the meeting leaves me feeling. I feel flawed and defeated,like they are looking and thinking all kinds of terrible things about my child and I. Is this a normal response?? Maybe all the years of silence and feeling like I'm enduring this alone has made me insecure as a parent. I appreciate this place,I appreciate all of you. Have a Blessed Day! > > This is great Reggi. Very impressive. >  > Francine > > > Speak with Him Thou for He hearest. > Spirit with Spirit can speak. > Closer is Love than breathing, > Nearer than hands and feet. > > (with appreciation for Tennyson) > > > re: frustrated > >  > > > I've never posted to this list, but I am so angry about sad situation with your son's school I am breaking my silence.  > > > I also had a terrible time getting my son's school to make appropriate accommodations.  They applied really inappropriate disciplinary actions and mislead me on their activities.  It was awful, and my son was so unhappy during this time, really, really depressed.  I'm thinking that maybe telling you what I did to finally get my son's school to work with us will give you some ideas. > > > 1.  When things aren't going well, I called for IEP meetings very frequently to have the school team give me updates.  For about a year and a half I called for an IEP meeting every other week, which included all my son's teachers, the school counselors, spec ed teachers, and principal.  I also included the district student services principal and district psychologist.  Yes, every other week with all those people.  I also brought along my son's BSC, and sometimes other support staff.  If they thought the accommodations were expensive, they could add up the cost in terms of their time for not making accomodations. > > > 2.  Bring a laptop to every meeting and document what is said.  Ask a lot of questions and take really good notes.  Like if they are talking about letting my son take a break when he starts to get angry or frustrated, I'd ask them to give me a step by step description of what that meant.  How did they know he was getting frustrated?  Where would he go for this break?  How long was it?  Seeing me type all this up made them very aware that I was holding them accountable.  Then at the next IEP meeting, I'd ask for a follow up on this- how often did he take breaks, how often did they miss his escalating, how was the re-entry after his breaks, etc. > > > Good luck!! >  >  > Reggi Levin > reggi@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2011 Report Share Posted April 1, 2011 And sometimes your local school district has to foot the bill. That has been our experience here in PA. My son was having SO many problems at our local public school and finally the school psychologist recommended him for a private small school that specializes in kids on the spectrum. The local discrict provides bus transportation as well! Barbara Re: Frustrated So sorry to hear of your ordeal. So familiar. Our son was recently recommended for expulsion, it was so unreal. Eventually with an advocate we were able to get them to not expell him, but I decided that the bullying and the constant stress of the other shoe dropping was too much...so we are homeschooling him for at least the next year 6 and 7 th grade and probably beyond until we figure out how to pay for a private school we'd like to try. I just couldn't hack the stress anymore, and homeschooling him has been good for us. I just met a woman who was thinking she wouldn't be able to homeschool, as her son has so much anxiety about the work etc...turns out she was trying to do what they do in school, even using their textbooks from when he was in school. I had her come over and look at my curricullum that usually we can get it done by lunchtime if he applies himself and it isn't nearly as much work as she would think. For my kid, small chunks of each subject are best. So he does a page on spelling a day, a couple pages of grammar exercises (basically, like placing apostrophes or quotes in the reading material provided) he does a math lesson a day (Saxon math), reads and studies some science (maybe 20 minutes) , reading comprension read the story monday, answer one page of questions tues, the next page wed, pick out a short related project (like write a letter to a missionary or a relative) and finish up the project on friday. He does a little world culture each day, about 15 minutes of reading and I have him take notes now on the computer to help him better retain the info...then if we have energy and time we may do his faith workbooks or a little of an elective, but I don't stress it if he doesn't...so my new friend was so relieved that she didn't have to do what he was doing in the actual school and could tailor it to his needs.... But i am not going to say everyone should ! homeschool, my other three aren't for now...but don't lose hope, and you are doing what is right for YOUR child no matter what! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2011 Report Share Posted April 1, 2011 One thing that helps me when dealing with all of the "professionals" is that they have studied this stuff to some extent and worked with some families, but they probably go home to peace, order, & rational people. They probably don't know what it is like to struggle with money over treatments or how this can wear you down to the point of giving up. Until they have dealt with this day in and day out for years, 24/7 with no breaks then they will be considered more of an expert on my child than I am. But they have no idea what going through this is like and I ALWAYS consider myself the most competent and knowledgeable person in the room when it comes to discussing my child. Period. The letters behind their names are not equal to the letters (alphabet soup of diagnosis) my child has been given over the years. They are not friends and although it would be nice if they liked me, it really doesn't matter as they are a means to an end to get what my child has a right to and needs. I have always felt like I needed to show off my "typical" children so people would know I was a good mother. The people who have only seen my spectrum kids. But if I focus on looking good to everyone, I won't be there for my children who need me. It truly is just a choice. Another good thing to do that always helped me was to never sign anything during a meeting in which it was presented to me. I wanted to take it and look it over when there aren't 5 professionals staring me down across a conference table looking at their watches. They can all sign it but I will take it and think about it. It takes more time in the long run and will certainly irritate some, but it might allow you to feel some power and think when you are best able to have a clear head. Hang in there! You are not alone. From: csadler239 <csadler239@...>Autism and Aspergers Treatment Sent: Thu, March 31, 2011 8:38:38 AMSubject: Re: frustrated Thank you Reggi for the reply and advice. I'm heading to school now for another IEP meeting.I will keep in mind all that you have said. I so wish I could go back to bed and hide under the covers but I know I have to do this. I just hate the way the meeting leaves me feeling. I feel flawed and defeated,like they are looking and thinking all kinds of terrible things about my child and I. Is this a normal response?? Maybe all the years of silence and feeling like I'm enduring this alone has made me insecure as a parent. I appreciate this place,I appreciate all of you. Have a Blessed Day!>> This is great Reggi. Very impressive.>  > Francine> > > Speak with Him Thou for He hearest.> Spirit with Spirit can speak.> Closer is Love than breathing,> Nearer than hands and feet.> > (with appreciation for Tennyson)> > > re: frustrated> >  > > > I've never posted to this list, but I am so angry about sad situation with your son's school I am breaking my silence.  > > > I also had a terrible time getting my son's school to make appropriate accommodations.  They applied really inappropriate disciplinary actions and mislead me on their activities.  It was awful, and my son was so unhappy during this time, really, really depressed.  I'm thinking that maybe telling you what I did to finally get my son's school to work with us will give you some ideas.> > > 1.  When things aren't going well, I called for IEP meetings very frequently to have the school team give me updates.  For about a year and a half I called for an IEP meeting every other week, which included all my son's teachers, the school counselors, spec ed teachers, and principal.  I also included the district student services principal and district psychologist.  Yes, every other week with all those people.  I also brought along my son's BSC, and sometimes other support staff.  If they thought the accommodations were expensive, they could add up the cost in terms of their time for not making accomodations.> > > 2.  Bring a laptop to every meeting and document what is said.  Ask a lot of questions and take really good notes.  Like if they are talking about letting my son take a break when he starts to get angry or frustrated, I'd ask them to give me a step by step description of what that meant.  How did they know he was getting frustrated?  Where would he go for this break?  How long was it?  Seeing me type all this up made them very aware that I was holding them accountable.  Then at the next IEP meeting, I'd ask for a follow up on this- how often did he take breaks, how often did they miss his escalating, how was the re-entry after his breaks, etc.> > > Good luck!!>  >  > Reggi Levin> reggi@...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2011 Report Share Posted April 2, 2011 Yes Reggi, you offer very good advice on several of your posts! : ) > > This is great Reggi. Very impressive. >  > Francine > > > Speak with Him Thou for He hearest. > Spirit with Spirit can speak. > Closer is Love than breathing, > Nearer than hands and feet. > > (with appreciation for Tennyson) > > > re: frustrated > >  > > > I've never posted to this list, but I am so angry about sad situation with your son's school I am breaking my silence.  > > > I also had a terrible time getting my son's school to make appropriate accommodations.  They applied really inappropriate disciplinary actions and mislead me on their activities.  It was awful, and my son was so unhappy during this time, really, really depressed.  I'm thinking that maybe telling you what I did to finally get my son's school to work with us will give you some ideas. > > > 1.  When things aren't going well, I called for IEP meetings very frequently to have the school team give me updates.  For about a year and a half I called for an IEP meeting every other week, which included all my son's teachers, the school counselors, spec ed teachers, and principal.  I also included the district student services principal and district psychologist.  Yes, every other week with all those people.  I also brought along my son's BSC, and sometimes other support staff.  If they thought the accommodations were expensive, they could add up the cost in terms of their time for not making accomodations. > > > 2.  Bring a laptop to every meeting and document what is said.  Ask a lot of questions and take really good notes.  Like if they are talking about letting my son take a break when he starts to get angry or frustrated, I'd ask them to give me a step by step description of what that meant.  How did they know he was getting frustrated?  Where would he go for this break?  How long was it?  Seeing me type all this up made them very aware that I was holding them accountable.  Then at the next IEP meeting, I'd ask for a follow up on this- how often did he take breaks, how often did they miss his escalating, how was the re-entry after his breaks, etc. > > > Good luck!! >  >  > Reggi Levin > reggi@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2011 Report Share Posted April 2, 2011 Yes Reggi, you offer very good advice on several of your posts! : ) > > This is great Reggi. Very impressive. >  > Francine > > > Speak with Him Thou for He hearest. > Spirit with Spirit can speak. > Closer is Love than breathing, > Nearer than hands and feet. > > (with appreciation for Tennyson) > > > re: frustrated > >  > > > I've never posted to this list, but I am so angry about sad situation with your son's school I am breaking my silence.  > > > I also had a terrible time getting my son's school to make appropriate accommodations.  They applied really inappropriate disciplinary actions and mislead me on their activities.  It was awful, and my son was so unhappy during this time, really, really depressed.  I'm thinking that maybe telling you what I did to finally get my son's school to work with us will give you some ideas. > > > 1.  When things aren't going well, I called for IEP meetings very frequently to have the school team give me updates.  For about a year and a half I called for an IEP meeting every other week, which included all my son's teachers, the school counselors, spec ed teachers, and principal.  I also included the district student services principal and district psychologist.  Yes, every other week with all those people.  I also brought along my son's BSC, and sometimes other support staff.  If they thought the accommodations were expensive, they could add up the cost in terms of their time for not making accomodations. > > > 2.  Bring a laptop to every meeting and document what is said.  Ask a lot of questions and take really good notes.  Like if they are talking about letting my son take a break when he starts to get angry or frustrated, I'd ask them to give me a step by step description of what that meant.  How did they know he was getting frustrated?  Where would he go for this break?  How long was it?  Seeing me type all this up made them very aware that I was holding them accountable.  Then at the next IEP meeting, I'd ask for a follow up on this- how often did he take breaks, how often did they miss his escalating, how was the re-entry after his breaks, etc. > > > Good luck!! >  >  > Reggi Levin > reggi@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2011 Report Share Posted April 4, 2011 Thursday's meeting went well. Teacher and District ESE rep were helpful. The ESE rep has a son with AS and was insightful to what is happening and is reccomending that my son be moved to the smaller classroom. The problem is the school's principle, he doesn't seem as motivated as we are.He called me on Friday/I asked him why he won't approve my son to be moved. He said they needed to have a staffing meeting to discuss if this is the right decision etc(blah blah blah). I feel like he bent me over and blew a huge plume of smoke up my @$$! I don't get how you call someone in from the district/have your educated teacher attend and all are in agreement that based on my son's reaction to the amount of stimulation in the class/the clear improvement when he has one on one instruction,that you wouldn't decide for the good of this child that this is a good decision. I found out that because my son is ESE he is offered the Mckay scholarship through the state of Florida. I applied right away and was informed that most likely he will be granted it. Now to figure out a school appropriate for him. I did make an appointment this week to see one of the schools. Was told based on what they usually pay that my portion would be between 50 to 100 a month for 10 months. I'm hopefull,still frustrated but making it one day at a time. By the way on Thursday one heck of a storm came through our part of Florida knocking down trees and power for days. I'm glad to be back and thank you all for your posts not only to me but for the information you give,some is very insightful. I appreciate it>Kathy > > > > This is great Reggi. Very impressive. > >  > > Francine > > > > > > Speak with Him Thou for He hearest. > > Spirit with Spirit can speak. > > Closer is Love than breathing, > > Nearer than hands and feet. > > > > (with appreciation for Tennyson) > > > > > > re: frustrated > > > >  > > > > > > I've never posted to this list, but I am so angry about sad situation with your son's school I am breaking my silence.  > > > > > > I also had a terrible time getting my son's school to make appropriate accommodations.  They applied really inappropriate disciplinary actions and mislead me on their activities.  It was awful, and my son was so unhappy during this time, really, really depressed.  I'm thinking that maybe telling you what I did to finally get my son's school to work with us will give you some ideas. > > > > > > 1.  When things aren't going well, I called for IEP meetings very frequently to have the school team give me updates.  For about a year and a half I called for an IEP meeting every other week, which included all my son's teachers, the school counselors, spec ed teachers, and principal.  I also included the district student services principal and district psychologist.  Yes, every other week with all those people.  I also brought along my son's BSC, and sometimes other support staff.  If they thought the accommodations were expensive, they could add up the cost in terms of their time for not making accomodations. > > > > > > 2.  Bring a laptop to every meeting and document what is said.  Ask a lot of questions and take really good notes.  Like if they are talking about letting my son take a break when he starts to get angry or frustrated, I'd ask them to give me a step by step description of what that meant.  How did they know he was getting frustrated?  Where would he go for this break?  How long was it?  Seeing me type all this up made them very aware that I was holding them accountable.  Then at the next IEP meeting, I'd ask for a follow up on this- how often did he take breaks, how often did they miss his escalating, how was the re-entry after his breaks, etc. > > > > > > Good luck!! > >  > >  > > Reggi Levin > > reggi@ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2011 Report Share Posted April 4, 2011 Well I lost my response when I hit the wrong button so here i try again! (You know the second try is never as good as the first lol) I do feel responsible,how could I not he is my child. That is what my gut tells me,I at times have that chip on my shoulder and it is a hard one to push off. I even find myself defensive when my mother and husband interjects with their opinions/suggestions/comments. I REALLY TRY NOT TOOOOO! I know it is me, I feel like there is a secret place in me/I store all the things I can't openly feel/express,it's the melting pot of shame,blame,fear,regret. It is easy to go to the dark place,the why me,what did I do,Lord was I that bad of a child place.I have been depressed and got medical attention for it. Best thing I ever did!! Once on meds for a while I started to feel better/more alive than I have in years. I still can easily bring myself down when Im under a lot of pressure but overall with meds and finding the little bright spots in life, I feel pretty good. I have even considered counseling but not sure if it works, Any advice? Most people just want to be accepted/at the end of the day that's all I want for my child. I accept my son just the way he is,my heart and soul lives for him, Ive accepted his differences,Ive accepted my job in life is to be his Mom. kathy > > > I think it's the most normal thing in the world to feel defensive and insecure > when people are talking about what is wrong with your kid. I remember feeling > like there was an unspoken subtext that went something like " if only Reggi was a > better mother, this boy would be less aggressive, better able to adapt to the > school, more responsive to authority, blah blah blah " . When my son was in > pre-school his behavior really shocked the preschool teachers. I remember some > really confrontational and hostile conversations. They absolutely blamed me. > And they were absolutely wrong. And not very smart or resourceful. > > I have to admit that I've said some things that I really regret when I was > feeling defensive and angry. And I was unable to really listen when I felt that > way. I apologized and I've tried to learn. Now, when I feel myself starting to > tense up and feel defensive, I remind myself that the teachers probably feel the > same way, like they are being blamed in some way. And I remember my job- to be > my child's advocate, to pull a group of people together who will give him the > tools and support he needs. Doesn't matter what they think of me. > > Do I remember correctly that autism and working with the school is relatively > new for you? Give yourself a break- be gentle with yourself. Eat a lot of > chocolate. And don't isolate yourself. Talk to friends, find a local support > group. They will be able to help you in so many ways. This is really > important! If you are depressed, take these feelings seriously and get > treatment. Talk to your doctor about what you are going through. This is not > the time to practice martyrdom. Your child needs you to be strong, and this bad > time won't last forever. > > > Reggi Levin > reggi@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2011 Report Share Posted April 4, 2011 I may be wrong, but I thought with No Child Left Behind that if you request for your child to be moved to a different classroom they HAVE to do it. You might want to check on that. From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of csadler239 Sent: Monday, April 04, 2011 9:17 AM Autism and Aspergers Treatment Subject: Re: frustrated Thursday's meeting went well. Teacher and District ESE rep were helpful. The ESE rep has a son with AS and was insightful to what is happening and is reccomending that my son be moved to the smaller classroom. The problem is the school's principle, he doesn't seem as motivated as we are.He called me on Friday/I asked him why he won't approve my son to be moved. He said they needed to have a staffing meeting to discuss if this is the right decision etc(blah blah blah). I feel like he bent me over and blew a huge plume of smoke up my @$$! I don't get how you call someone in from the district/have your educated teacher attend and all are in agreement that based on my son's reaction to the amount of stimulation in the class/the clear improvement when he has one on one instruction,that you wouldn't decide for the good of this child that this is a good decision. I found out that because my son is ESE he is offered the Mckay scholarship through the state of Florida. I applied right away and was informed that most likely he will be granted it. Now to figure out a school appropriate for him. I did make an appointment this week to see one of the schools. Was told based on what they usually pay that my portion would be between 50 to 100 a month for 10 months. I'm hopefull,still frustrated but making it one day at a time. By the way on Thursday one heck of a storm came through our part of Florida knocking down trees and power for days. I'm glad to be back and thank you all for your posts not only to me but for the information you give,some is very insightful. I appreciate it>Kathy > > > > This is great Reggi. Very impressive. > >  > > Francine > > > > > > Speak with Him Thou for He hearest. > > Spirit with Spirit can speak. > > Closer is Love than breathing, > > Nearer than hands and feet. > > > > (with appreciation for Tennyson) > > > > > > re: frustrated > > > >  > > > > > > I've never posted to this list, but I am so angry about sad situation with your son's school I am breaking my silence.  > > > > > > I also had a terrible time getting my son's school to make appropriate accommodations.  They applied really inappropriate disciplinary actions and mislead me on their activities.  It was awful, and my son was so unhappy during this time, really, really depressed.  I'm thinking that maybe telling you what I did to finally get my son's school to work with us will give you some ideas. > > > > > > 1.  When things aren't going well, I called for IEP meetings very frequently to have the school team give me updates.  For about a year and a half I called for an IEP meeting every other week, which included all my son's teachers, the school counselors, spec ed teachers, and principal.  I also included the district student services principal and district psychologist.  Yes, every other week with all those people.  I also brought along my son's BSC, and sometimes other support staff.  If they thought the accommodations were expensive, they could add up the cost in terms of their time for not making accomodations. > > > > > > 2.  Bring a laptop to every meeting and document what is said.  Ask a lot of questions and take really good notes.  Like if they are talking about letting my son take a break when he starts to get angry or frustrated, I'd ask them to give me a step by step description of what that meant.  How did they know he was getting frustrated?  Where would he go for this break?  How long was it?  Seeing me type all this up made them very aware that I was holding them accountable.  Then at the next IEP meeting, I'd ask for a follow up on this- how often did he take breaks, how often did they miss his escalating, how was the re-entry after his breaks, etc. > > > > > > Good luck!! > >  > >  > > Reggi Levin > > reggi@ > > > Quote Link to comment Share on other sites More sharing options...
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