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#31 of 50 Old 06-20-2012, 06:56 PM
 
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OP- your child is not required nor is the school/teachers required to know what is going on with your DD (sure you know that) -it's strictly a private matter and I respect what you are doing-

 

I think this posts shows a deep lack of understanding about how  IEPs and 504 plans work. You don't get accommodations unless you come clean about the situation and have documentation to PROVE that accommodations are needed. The notion that the teachers/school don't have a right to know is incorrect.

I am certainly well aware of this Linda-

 

she would not have had the IEP without the school knowing it- what she DD does not have to do is report every single thing - she does have the right to privacy and she has the right to tell them what they need to know and nothing more- the other suggestion that the DD should be  more open about her illness is also a private matter for her to discuss as she feels fit-she is not required to do so with her teachers if she does not feel she wants to talk about it or to her peers-just because you have an illness it is not open discussion for the everyone- seems like the DD is suffering enough and it is OK to not have everyone know- let her go at her own comfortable pace

 

 

 

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I feel much better after discussing this with the attorney and I know he has this handled and I can stop trying to do this all on my own.  He is a specialist in education law, and that makes me comfortable.

 

hope that you can make the lupus foundation aware and I do hope they can support you financially - this really is not just for your DD in the end- it will help other (at least we can hope!) that the school wakes up to this!!!

 

60 is simply outrageous - I can't imagine how thick the paper work is on her- that is just awful!!! ahhhhhhhh

 

hope you like your lawyer and I hope he good- real good!

 

so sorry to read your posts-NO one should have to deal with this


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#32 of 50 Old 06-20-2012, 07:24 PM
 
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I think you should sue for damages...to include your lawyer fees.

 

Good luck. :(


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#33 of 50 Old 06-20-2012, 07:35 PM
 
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I know you don't want to do the media stuff but maybe via the lawyer you could do a private type story- the other TAXpaying public should know what this will cost the school for not doing what they were suppose to do!

 

 

 

 

 

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I think you should sue for damages...to include your lawyer fees.

me too!


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#34 of 50 Old 06-21-2012, 06:31 AM
 
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Sending you lots of good vibes and hoping that you get some action for your DD soon.

 

60 IEP meetings in one year and no results - that's appalling.

 

The system you describe is unworkable. By insisting that teachers, parents and students cannot communicate directly and forcing everything through a cumbersome bureaucratic process for the mistaken purpose of "fairness" between students, they have removed the "individual" from "IEP". 

 

Best wishes. Please keep us updated. 

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#35 of 50 Old 06-21-2012, 09:14 AM - Thread Starter
 
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LOL Noooo...I am sorry if I misled. I have had 60 meetings over many, many years- not one year good heavens! But remember my daughter is going to be a sophmore in high school, so its a LONG period of time!  Her EC file is over 1200 pages long.  Its amusing really how many meetings we have had and compare it to progress, which is essentially zero. I guess it shouldnt be funny, but something about it is funny. Like really how can human beings possibly be this unproductive lol.

 

And I guess some of them technically were not IEP meetings, in the formal sense, but more group meetings to deal with situations that were going on.  I only know it was 60 because I just got finished organizing her whole file for the attorney.  Ok well its really 59-the 60th will be in August :)  

 

As for what EC kids need to disclose to teachers: there is absolutely no requirement to disclose details of personal medical information to teachers. Yes, some of it would have to be disclosed to the IEP team who writes the IEP-but the teachers are privy only to the actual accomodations on the IEP and the coding of the IEP (ie, OHI which is our coding for Other Health Impaired)-there is no requirement that they know every detail of a kid's medical issues and what they are going through. Remember, these are kids, yes, but they are still human beings and have a right to medical privacy like everyone else. There is absolutely no need for any child to feel like they have to have in depth discussions with individual teachers to tell them what their medical issues are.  No way.  Although I realize it might evoke a sense of sympathy deeper than one that is evoked if a kid does NOT tell their teachers their personal medical information, it should not be that way-revealing personal information should not be the path to getting help and help should not be delivered for sympathy but rather need.  And the need is clearly stated for any kid with an illness that means they are frequently out of school.  The fact that the kid has a medical illness and has an IEP which was created using documented doctors and hospital information (which the teachers do not have a right to see, that is a violation of HIPPA) is enough information for teachers and school staff to go by.  If at any point my daughter feels more comfortable revealing anything she chooses to reveal, thats fine with me too.  We have told the IEP team a TON of personal medical information, (to the point where I think it is too much) but all of that information is not shared between the IEP team and the teachers.

 

 

Anyway thank you for all of the good wishes. It is very empowering to have an attorney now on our side.  I have already found out in only two days more than I knew in years and things I never even thought of that are such clear violations.  I'm not looking for money-but I do have such a passion about this issue and i want to see it righted.  And I can just imagine how many kids there are in similar situations whose parents arent as educated as I am, dont have the resources to do anything about it, and dont even realize that their kids are being shortchanged.  I am going to make a change, and I feel so energized by that.  Wish me luck!!!!!! I know it will be a long haul but I am in it for that long haul. 

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#36 of 50 Old 06-21-2012, 09:46 AM
 
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a bit on/off topic - talking to my BFF today who as been dealing with this in your state for a little over ten years- your state really SUCKS!

 

It was mentioned to me that one real big drawback is when you DO have a great teacher that is willing to buck the system (in your case deal with the group in the district IEP program-say anything that might go against what they are deciding) their hands are sooooooo tied-right to work state! From what I hear most teachers don't want to speak up out of fear-so sad! 

 

I hear your other drawback is your DD is passing-if she was really failing it would mean more help but they feel she is OK- soooooo stupid! I hear your frustration and I also heard 10 hours! you are luck most aren't even getting that.irked.gif


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#37 of 50 Old 06-21-2012, 01:00 PM - Thread Starter
 
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This is totally true! I had one teacher once that I asked a question to regarding policy in our school district. I had gotten an answer from the EC team that didnt seem correct. She told me I was right, but also told me if I ever told anyone she told me that, she would deny saying so! They are scared to death. Its REALLY sad.

 

I have met two EC coordinators who I loved in our many-year journey. They were proactive, helpful, and creative. They were both fired by the system. 

 

Our state really does suck, you are right!! I hope your BF gets what they need.  Its SO hard here. 

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#38 of 50 Old 06-21-2012, 02:05 PM
 
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My BFF is coming from a state that is NIGHT and day different! She herself was operated on for scoliosis as a preteen, she got FAR more from the district for the time she was out compared to what they are getting in NC for students like your DD.

 

She has a autistic DD and only has two more years of school left (right now things are good but she had a bad period and she had hired an education lawyer to deal with a district she no longer is in- she is now in Monore) - her NEXT big hurdle is that she choice for her DD after school ends is ONE choice! That's not a choice.

 

She knows how teachers have to walk a tightrope and it's not nice-we are both from the same state PA and things don't work that way here. AND they shouldn't! 

 

sending you lots of good vibes- please post updates!


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#39 of 50 Old 06-21-2012, 08:42 PM
 
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Kmamka, Mecklenberg or Wake?

 

I'm in Chapel Hill. I wish I had advice for you, but all I've got to offer is sympathy. So sorry you're having to go thru this. Hugs to you and your daughter. Best of luck with the lawyer, but watch what you post here. He may advise you to delete your posts.


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#40 of 50 Old 06-22-2012, 08:39 AM
 
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LOL Noooo...I am sorry if I misled. I have had 60 meetings over many, many years- not one year good heavens! But remember my daughter is going to be a sophmore in high school, so its a LONG period of time!  

 

My fault entirely - I misunderstood, you didn't mislead. I did recollect that she was a freshman in high school, but also thought that she had more effective support in elementary school. I made a leap to thinking that you were talking about her experiences in high school - different school, different administration etc.- so that got me to 60 meetings in one year.  

 

All in all, it's an incredibly frustrating and discouraging story and I wish you and your dd the best. 

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#41 of 50 Old 07-13-2012, 08:11 PM
 
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I think I may teach in your county....is it Wake County?  I'm a special educator for preschool services, working with blind and visually impaired children.  I'm wondering why this is such an issue on the school end - in preschool we are pretty much bending over backwards for physical issues.  Obviously, I'm not teaching at the high school level (I used to teach braille in a Middle School, though, so I have some experience with older grades) so I'm not sure about them getting a tutor.  What accomodations are on the IEP?
 

Edited to add:  Does your child have a case manager at the high school?  Are they advocating for your child and helping her keep up with her homework?

 

....about her status of OHI:  I do feel like it's in her best interest for her teachers to see the paperwork that got her qualified as OHI, and should spell out the nature of her health impairment and how it is affecting her ability to maintain in the classroom/school work. I frequently have students who are OHI for seizure disorders and it's very important for the school nurse to work closely with the teachers to help them know what is and isn't doable for the student.

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#42 of 50 Old 07-21-2012, 03:10 PM
 
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Sorry to hear about your situation.  Here is one possible suggestion based on our experience with "Learning Ally".  Our daughter is going into her senior year of HS now and throughout has gotten most to all of her HS books for free on-line from Learning Ally.  Since she is dyslexic she qualifies for these books which she loads on her iPod (not iPad) and it literally reads the text to her.  You might want to make a contact with them to determine if there is a way that they could help your daughter.

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#43 of 50 Old 07-25-2012, 01:49 PM
 
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Move to North Dakota.

 

My son has been dealing with depression/anxiety in high school - he was hospitalized suicidal, and missed the second semeseter of 9th grade. He had a 504, and the school bent over backwards to help him, every step of the way. I never, ever heard "Sorry, this is the rule, so this is the way it is". What I did hear, over and over again, was "How can we make this work for your son?"

 

In 9th grade, after he got out of the hospital, he didn't go back to class, but was in a classroom in the school. He had to drop German, orchestra, and gym, leaving him science, math, social studies, and English. He is a smart kid and a good student, but the mountain of make-up wirk was crippling. One day in late April his assistant principal called me and said "I have a new plan for James". He was able to take 3 of his classes on-line over the summer, and only had to finish up math before the end of the school year. That news changed my son's life - he ended up getting A's in all 4 classes, and started out 10th grade behind on credits, but caught up in the classes he needed (so he wasn't stuck in classes with 9th graders). The school allowed him to take a different phy ed class to replace 9th grade gym (again, so he could stay in class with his grade level). With only a couple of exceptions, teachers were very helpful, accomodating, and sympathetic, and the asst principal and guidance counselor had his back the whole way through. He continued to miss class the next couple of years, due to bouts of depression and panic attacks, and the school allowed him to miss many more than the prescribed number of days without a doctor's note (I couldn't realistically run him to the doctor every time he had a panic attack).

 

I have never taken our school for granted, but I not have an even deeper appreciation for how lucky we were. Mt son graduated from high school in May, and is headed off to college in a month. He never would have reached this point without such a supportive school behind him.


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#44 of 50 Old 07-29-2012, 07:31 PM
 
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Do you have any online charter high schools in your area? There are many in our area and we know many kids who participate in them for various reasons. There is class time and supervising teacher's provided. Some kids we know go into class once a week... others choose to go in for a couple hours every day. Depends on the child and what they feel they need. Even most of the traditional public school districts offer an "I-high" sort of deal.... virtual school. Something like this might be of benefit in your situation. 

 

We're not in your situation but we have some experience with the inflexibility of high school. It's quite a different world from middle and elementary. We've not had much luck fighting them about anything. We have chosen to go an alternative route specific to DD. 

 

 

yeahthat.gif We will be using a K12.com virtual high school option even though my dd is now in remission and could in theory go to public school now, I like the flexibility of HS'ing and avoiding the garbage that comes with using a public B&M school.


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#45 of 50 Old 07-29-2012, 07:35 PM
 
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Move to North Dakota.

 

My son has been dealing with depression/anxiety in high school - he was hospitalized suicidal, and missed the second semeseter of 9th grade. He had a 504, and the school bent over backwards to help him, every step of the way. I never, ever heard "Sorry, this is the rule, so this is the way it is". What I did hear, over and over again, was "How can we make this work for your son?"

 

In 9th grade, after he got out of the hospital, he didn't go back to class, but was in a classroom in the school. He had to drop German, orchestra, and gym, leaving him science, math, social studies, and English. He is a smart kid and a good student, but the mountain of make-up wirk was crippling. One day in late April his assistant principal called me and said "I have a new plan for James". He was able to take 3 of his classes on-line over the summer, and only had to finish up math before the end of the school year. That news changed my son's life - he ended up getting A's in all 4 classes, and started out 10th grade behind on credits, but caught up in the classes he needed (so he wasn't stuck in classes with 9th graders). The school allowed him to take a different phy ed class to replace 9th grade gym (again, so he could stay in class with his grade level). With only a couple of exceptions, teachers were very helpful, accomodating, and sympathetic, and the asst principal and guidance counselor had his back the whole way through. He continued to miss class the next couple of years, due to bouts of depression and panic attacks, and the school allowed him to miss many more than the prescribed number of days without a doctor's note (I couldn't realistically run him to the doctor every time he had a panic attack).

 

I have never taken our school for granted, but I not have an even deeper appreciation for how lucky we were. Mt son graduated from high school in May, and is headed off to college in a month. He never would have reached this point without such a supportive school behind him.

 

 

PLEASE PLEASE PLEASE check into a condition called Pyroluria, it causes crippling anxiety/depression and its treated with very high dose B6/Zinc, its an actual blood disorder thats detectable with a simple urine test. Getting dx'd and treated is life changing! Most Dr's don't have a clue about it but its real and I've seen the changes it brings in life from kids to adults.


Seriously?
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#46 of 50 Old 08-25-2012, 07:48 PM
 
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I know it's been a while since the last post, but I just came across the site while looking for suggestions to help my own daughter. We too are in NC, she is 16 and a junior in a charter school, she too has lupus. She currently has a 504, allowing her to have a second set of books at home and extra time for homework and catch up work and she attends school part time which means she will take 5 years to complete high school. I feel the same way as you regarding the fact that the school should educate your daughter and how important it is for them to be among friends. My daughter rarely sees friends out of school because she is so tired most of the time, it's important she sees them when she is at school. The only thing that causes her anxiety is homework and tests.

I am stunned that her school will not follow through on her IEP, it has to be beyond frustrating for you. I have had quite a few problems getting my daughter's school to provide help and have always been made to feel as if they are doing me a favor. I have had to educate myself along the way and fight for the help she does get. It has been suggested more than once that she be homeschooled, but, like your daughter, this is not the best for her and would be telling the school it's ok to get rid of children that need some extra help, well it's not ok. I feel that they now have accepted the situation and are a little more willing to help, but it really is like pulling teeth.

I wish I could offer some suggestions to help. You have done so much already, I'm sure things will improve now that you have the lawyer. It can be both physically and mentally exhausting coping with a child who is chronically ill, I hate that the school system has to add to the stress.

Good luck with her coming school year, I hope she has a good year both academically and physically.
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#47 of 50 Old 03-27-2017, 02:19 PM
 
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<p>Hello,</p>
<p> </p>
<p>My name is Lisa and I am from North Carolina.  I have a daughter who is 15 and a freshman in high school at public school here in  NC.</p>
<p> </p>
<p>She has lupus, which is an autoimmune disease which is chronic and incurable.  She usually misses about 30 school days a year due to either illness or doctor appointments/specialists etc. </p>
<p> </p>
<p>It was easier to manage when she was younger, but as she has gotten older school has gotten more difficult (in terms of content to be learned, amount of content, as well as how hard it is to "keep up and catch up" when she is out sick).  Also her illness has progressed, especially this year.  (Lupus is "triggered" by stress, which for her has steadily increased with school. I have been holding off lupus drugs for a long time, and this year, we had to finally give in and put her on her very first immunosuppressant.)</p>
<p> </p>
<p>She has gotten increasingly stressed out due to school over the past maybe 3 years.  Middle school  started our major problems. The schools dont use textbooks for curriculum any more, so I find it increasingly difficult to re-teach her missed material. She is on an IEP (has been for years) but the school system here has not been friendly to our situation and has not offered a single accomodation to help her keep up with school. </p>
<p> </p>
<p>She is probably a "B" student, but her grades slipped this year and now she has two "D"s on her most recent report card. She is a bright kid, (not gifted, but bright enough to manage B's and the occasional A).  She wants to go to college. She is so depressed that this year, I brought her to a psych, and he diagnosed her with an anxiety and depression disorder.  So now we are dealing with that on top of lupus.</p>
<p> </p>
<p>I joined this forum as I am looking for help from anyone else who has a sick child IN HIGH SCHOOL (sorry I am typing all caps not to yell but to emphasise-I find school issues to be MUCH differently handled in high school than in elementary-in elementary we had no problems).  I need ideas on how you keep your kids up with the lectures happening in the classroom.</p>
<p> </p>
<p>Here in NC we dont exactly have stellar schools. NC spends the 2nd to lowest amount on K-12 education in the entire nation.  So money is ridiculous and here in my city, which is a large city in NC, the school system is "known" for just blatantly ignoring IEPs, having IEPs that are ineffective, and basically stonewalling parents and taking the stance that they dont care how many laws they break, becasue they know parents will not be able to hire lawyers to sue them.  It is a VERY aggressive school system and well known in the area for this type of behavior. I am at the point after going through this for about five years that I think hiring a lawyer may be our only option. But I dont have the $10k it will cost and I am putting off the only option I have-to pull all the money out of my IRA to pay for this--to try to find any help I might be able to find out there in the cyber-universe  </p>
<p> </p>
<p>Thanks for reading this LONG post and for any ideas anyone might have. I appreciate it so much!</p>
5yrs later, and still no change...
I have spent the afternoon scouring Google, trying to find programs or help for my chronically ill daughter. I came upon this blog, and it struck an emotional chord. My daughter is 15 right now, and has been diagnosed with severe Crohn's Ileitis. She is undersized and underweight for her age, due to her intestines inability to absorb nutrients, she is anemic due to the bleeding and lack of her intestines ability to absorb iron. She goes for iron infusions every 2wks, she takes Humira shots every 2wks, she had to undergo an Ileocecectomy last month, to remove a portion of her small intestines, and a small portion of her colon, due to obstruction. She has been on and off of steroids and antibiotics to control her condition. She is constantly fatigued due to the anemia. She has been experiencing frequent bouts of uncontrollable diarrhea, and constant nausea due to bacterial overgrowth from her colon to her ileum from the surgery...more antibiotics. Not to mention that all this began Feb 2016, when she inexplicably started going into kidney failure, they had her classified as stage 3 kidney disease, and she was 5 days away from a Kidney biopsy, she was 14 at that time. Suddenly, her kidneys recuperated, for no reason her pediatric nephrologist can figure out. Possibly a yet to be diagnosed autoimmune disease, there are so many. She has a collection of specialists she's been to in just the past yr. A Pediatric Nephrologist, Lupus specialist, a Rheumatologist, Hematologists, now there are her constant GI specialist visits.
Should I even bother telling you how much school she's missed.
We, too, live in NC.
How much support do we get from her teachers, even though she's on a 504 plan...ZERO. They ridicule her, scrutinize her every move, scold her for not focusing on her work, single her out for harsh criticism on being behind, there are even those that make smart insulting remarks about her absences. When she went back to school after spending 5 days in the hospital, after surgery, one teacher said, "oh, do we have a new student, nice of you to join us." She was still walking hunched over from her post op recovery, and couldn't even be given an elevator key so she didn't have to climb stairs all day long...they were out of keys.
She is depressed, and filled with hopelessness. She has more Doctors than teachers. She feels like she has no future, and that no college, at least no good one, will ever accept her. She's lost, and in a world of adults that just...do...not...care. She's too much work, requires too much attention..."this school moves too fast, she should go to a school that moves slower, we don't have the extra time to dedicate to kids that fall behind."
Heaven forbid they should actually educate her. Heaven forbid they should care about the sick child that is falling through the cracks. It requires more work, more attention...it requires a heart...something else they don't have time for.
I am stressed and overwhelmed. I am at a complete loss as to what to do, other than get us both some much needed therapy.
This state lacks caring, lacks compassion, lacks empathy...those things require a higher salary and special training. They have no vision or forward thinking. Their children are suffering for it.
My little girl is suffering for it.
So, reading your story, and seeing that this was in 2012, I'm here to say, nothing has changed. I pray things have gotten better for you and your daughter, she would be 20 now? I pray she is thriving...that would give me hope for my daughter.
I feel your pain...you are not alone.
Please pray for me and mine.
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#48 of 50 Old 03-27-2017, 02:40 PM
 
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5yrs later, and still no change...
I have spent the afternoon scouring Google, trying to find programs or help for my chronically ill daughter. I came upon this blog, and it struck an emotional chord. My daughter is 15 right now, and has been diagnosed with severe Crohn's Ileitis. She is undersized and underweight for her age, due to her intestines inability to absorb nutrients, she is anemic due to the bleeding and lack of her intestines ability to absorb iron. She goes for iron infusions every 2wks, she takes Humira shots every 2wks, she had to undergo an Ileocecectomy last month, to remove a portion of her small intestines, and a small portion of her colon, due to obstruction. She has been on and off of steroids and antibiotics to control her condition. She is constantly fatigued due to the anemia. She has been experiencing frequent bouts of uncontrollable diarrhea, and constant nausea due to bacterial overgrowth from her colon to her ileum from the surgery...more antibiotics. Not to mention that all this began Feb 2016, when she inexplicably started going into kidney failure, they had her classified as stage 3 kidney disease, and she was 5 days away from a Kidney biopsy, she was 14 at that time. Suddenly, her kidneys recuperated, for no reason her pediatric nephrologist can figure out. Possibly a yet to be diagnosed autoimmune disease, there are so many. She has a collection of specialists she's been to in just the past yr. A Pediatric Nephrologist, Lupus specialist, a Rheumatologist, Hematologists, now there are her constant GI specialist visits.
Should I even bother telling you how much school she's missed.
We, too, live in NC.
How much support do we get from her teachers, even though she's on a 504 plan...ZERO. They ridicule her, scrutinize her every move, scold her for not focusing on her work, single her out for harsh criticism on being behind, there are even those that make smart insulting remarks about her absences. When she went back to school after spending 5 days in the hospital, after surgery, one teacher said, "oh, do we have a new student, nice of you to join us." She was still walking hunched over from her post op recovery, and couldn't even be given an elevator key so she didn't have to climb stairs all day long...they were out of keys.
She is depressed, and filled with hopelessness. She has more Doctors than teachers. She feels like she has no future, and that no college, at least no good one, will ever accept her. She's lost, and in a world of adults that just...do...not...care. She's too much work, requires too much attention..."this school moves too fast, she should go to a school that moves slower, we don't have the extra time to dedicate to kids that fall behind."
Heaven forbid they should actually educate her. Heaven forbid they should care about the sick child that is falling through the cracks. It requires more work, more attention...it requires a heart...something else they don't have time for.
I am stressed and overwhelmed. I am at a complete loss as to what to do, other than get us both some much needed therapy.
This state lacks caring, lacks compassion, lacks empathy...those things require a higher salary and special training. They have no vision or forward thinking. Their children are suffering for it.
My little girl is suffering for it.
So, reading your story, and seeing that this was in 2012, I'm here to say, nothing has changed. I pray things have gotten better for you and your daughter, she would be 20 now? I pray she is thriving...that would give me hope for my daughter.
I feel your pain...you are not alone.
Please pray for me and mine.

I highly recommend either homeschooling or an online high school. We have used a virtual public school through K12.com for a long time and LOVE them. Both my kids are special needs and they bend over backwards to help them catch up when needed.

Seriously?
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#49 of 50 Old 03-28-2017, 04:47 PM
 
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I highly recommend either homeschooling or an online high school. We have used a virtual public school through K12.com for a long time and LOVE them. Both my kids are special needs and they bend over backwards to help them catch up when needed.
Thank you for the suggestion. I am considering home schooling, I just wanted it to be a last resort. I just feel the last thing she needs now, is isolation. She wants to be alone, all the time, that's the scary part, I see her spiraling. No emotionally healthy 15yr old girl, should want to be alone, frequently. I'm hoping therapy will help with that, and maybe that will help her adjust well to home schooling.
So, when I weigh that against what she's dealing with now in school, I think it's time to bite the bullet.
Wish us luck...and prayers!
thank you!
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#50 of 50 Old 03-28-2017, 04:57 PM
 
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Thank you for the suggestion. I am considering home schooling, I just wanted it to be a last resort. I just feel the last thing she needs now, is isolation. She wants to be alone, all the time, that's the scary part, I see her spiraling. No emotionally healthy 15yr old girl, should want to be alone, frequently. I'm hoping therapy will help with that, and maybe that will help her adjust well to home schooling.
So, when I weigh that against what she's dealing with now in school, I think it's time to bite the bullet.
Wish us luck...and prayers!
thank you!
Here's the thing about HS'ing, these kids tend to get MORE socialization then the public school kids because they are always out in the community. Tap into your local HS'ing groups, I bet there's far more opportunities then you think to get her out of the house.

Seriously?
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