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New here, looking for help with ideas for chronically ill child - Page 3

post #41 of 46

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.

post #42 of 46

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.

post #43 of 46

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.

post #44 of 46
Quote:
Originally Posted by whatsnextmom View Post

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.

post #45 of 46
Quote:
Originally Posted by nd_deadhead View Post

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.

post #46 of 46
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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