My son is Sick and can't take any medicine. (update 10-14-09)

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jimofsanston

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Joined
Jan 6, 2009
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762
Location
Sandston, Va
Contacted the Department of Education for the Sate. They gave me a lot of good information. I Was able to finially get hold of the IEP person at his school and called for an emergency meeting on Friday morning. Hopefully this will get things rolling. We recieved a call from the school board last night they are doing a wide spread vacination of all the students and teachers due to extreme absents due to the H1N1 and the swine flu in our schools. Now the stress really starts if he gets sick.


A lot of you don't know me except for my few post that i have made. My son is 14. 3 years ago he was diagnosed with Steven Johnson Sydrome (it is very rare). If you want to check it out on the web there is a formum for it but i warn you about looking at the pictures of the kids and adults that have it, it attacks ones skin like having third degree burns and they have to treat you as a burn patient. Which he can have a deadly reaction to any medicine given to him, even over the counter remidies. We are having to treat him the old fashion way chicken noodle soup and bed rest. If he gets to the point of having to be given medcine we have to take him to the hospital where they will admit him for observation while giving him meds. The doctors told us not to bring him, only if he gets worse to just treat him at home till then. But that is a hard thing to do just to see him suffer with temps and coughs. He wanted to go back to school for his high school days, but we can't send him when he is sick though. Home schooling a high school student is very expensive doing the online high schools. I am going out of my mind trying to figure out how to get the schools help for him so he does not fall behind. I as for your prayers from everyone his name is Jimmy.
 
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Jim I am sorry to hear about your son and what him and your family is going through. I would think the Board of Education should provide you with all needed books and notes for him to keep up it will be your job to administer it. They may also have a in service worker that can come to your house if it is safe for your son that can give him lessons as well. Our prayers are with you and your son!!
 
Jim,
My heart goes out to you, your son, and your whole family.
We will keep your Jimmy in our prayers that he may be healed,
and return to a normal life.
Stay strong, your son needs you at full capacity.
 
Wow.......
What can I say except that you and your family have my prayers and then some.

God bless you and yours........................................

Roy
 
Prayers are Sent. I couldnt imagine what you are going through, I just know how I feel when my son gets a cold. Have you checked with the insurance company? Special circumstances call for alternate care..
 
Jim,

I am so sorry for your son's illness and the how difficult it must be for you and your wife to not be able to treat his suffering. You and your family have my heartfelt prayers.

Take care and God Bless.

Jim Smith
 
Jim, I am sorry to hear about your son. There should be a teacher for home bound students in your school district. The school is required by law to furnish him with an education. You might have to fight tooth and nail but it is your right. I am almost positive that this would be the case in any state. I know it is here in Texas. Good luck in your fight. If this does not work perhaps you can get the district to provide the books and assignments for him to do at home. It will be hard but HE is worth it.

If the district gives you trouble with this, try going to the state board of education. He is entitled to an education.

Martha
 
Jim,

I also hurt for you for what you and your family are going through. Martha makes an excellent point. This should be a disability for your son that it seems would entitle him to assistance.

I hope and pray things get better for you,
 
Jim,

Thanks for sharing with us about Jimmy. Our prayers will be lifted up for him and that you and your family will draw on the strength from those prayers.

Bill Sampson, Richmond
 
I am lifting you, your son and your wife in prayer. I hope that you are able to find a support organization locally that can help in some way. Thank you for sharing this as I know it is difficult for some people to open up.

I will continually remember your family in prayer.
 
My wife works in the field. Ask the school about an IEP. You may have to battle for it, but it is your right for your son.
 
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If you find a IEP wont work tell them to formulate a 504 plan. They will be reluctant and you will have to chase em all down but it will happen...Ive been there so I can tell you that you have to stay on the board to get em moving.
 
I know when I missed school for a period of time the school district sent out a tutor every day to my hospital first and then my home as I recovered.

I know that here in ohio the school districts are required to pay for education of a child regardless of circumstances.
 
I have been thinking about your situation since last night when I first read and replied to the problem. It upsets me greatly that someone in the school system has not given you some options, such as IEP's and 504 plans. But aside from that there should be a way in our era of technology that his classes could be broadcast via internet to him at home. It seems to me that they could have a web cam in each classroom and send the lessons in real time to him. This should not be expensive and would be of more benefit to him, as he would be a part of the class and able to ask and get answered questions. If a teacher is not willing to be "live" on the internet then that teacher is either doing something they are not supposed to be doing or not doing something that they should be doing. (I am a retired teacher and have seen it happen) One other thing that will be very important regardless of the action that the district takes is documentation. The more documentation you have in writing the better off you will be. That means doctor's diaganosis as well as visits and calls to the doctor. In addition, be sure to document everything that you have tried, when and who you talk to in person and on the phone and a summary of that conversation. The more you have the better. This process takes a number of months, but there should be written guidelines about when and how long it will take. I wish you well and hope that you pleas will be heard and dealt with appropriately. God bless.

Martha
 
Thankfully, you have two federal laws in your corner . . . The Individual With Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act.

The first step is to contact your local school district. I would start with the Superintendent's Office or the Director of Special Education. Tell them what's going on with your son. Just from the little that I've read, your son may qualify for Special Education . . . . Homebound Instruction. His medical condition will probably be identified as being under the category of "Other Health Impaired". If they don't feel that he will qualify for Special Education they should then discuss having a 504 Plan for him. In either case, if he cannot participate in school because of his medical condition, they are responsible for providing alternative programming.

If you feel that your request is not being handled in a timely manner, then contact the Virginia Director of Special Education Dispute Services, Judith Douglas at 804-225-2013.

I would also contact the Virginia Special Education Center for Advocacy:
http://www.virginialac.org/

PM me if you have specific questions or need additional advice. BTW, I wouldn't settle for things taking a couple of months. Let them know that you expect the situation to be resolved in a timely manner . . . and be persistent.
 
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The body is one complicated machine. Sorry to hear about your son, that is one complicated challenge. Positive thoughts your way.
 
Boy I have just read all replies this is one terrifc site! I too will be praying for you and your family. Please let us know how things work out. Seems like you have got some good advice at least to help with the education I can't imagine the personal hardship this is causing your family!
 
I am a pediatric Home Care RN and have 2 patients with Steven Johnson Syndrome. Your son is entitled to tutoring as long as he is not able to go to school. It is a federal law that makes tutoring available. In terms of his medical care have your MD's contacted all resources for this disease process. There is lots of research being done at many pediatric centers across the US. I hope that he continues to be well and that the education issue can be quickly resolved.
 
Jim,

My hearfelt regrets at hearing of Jimmy's illness. I'll add Jimmy and your family to our prayer chain. May the Lord bless and heal Jimmy.

Al
 
Not a good situation for you, your family and especially your son Jim. Let's hope that things take a turn for the better.

As fro his education I agree with Martha. Sure there are state and federal laws covering such situations.
 
Like Martha said, the Dept of Ed should be able to provide your son with a home tutor. My sister's health was frail. For almost an entire school year she had a home tutor - then off and on for 3 more years.

Budget cuts may make a difference, though. I'll add him to my prayer list.
 
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