What do you say, how do I answer? Jordan.

[ku111]

Somewhat of just a rant. LOL!  I was at the school yesterday filling Jordan's medication.  The RN said to me, "We have never seen what you are saying here".  "Jordan seems just fine and the teachers haven't seen it either".  At that moment Jodan came in for his noon meds and we were talking.  Jordan is shifting his weight from one side to the other, looks tired and is slow in his speech.  I asked him why he was shifting back and forth and he said my one foot is numb and both legs are stiff from sitting for an hour and I keep going in and out today (concentration). He said I lost my balance in the hall and dropped my books.  Nobody helped me just kicked my papers around.  He smiled and walked out stiff legged back to class.  I didn't show it to him but broke my heart.  I know I am just really touchy about all of this but he is trying his hardest to be normal in front of his peers.  This is not how our son used to be!  Do they think we do all the dr's for fun?  Seems so insensitive to me or is it just me?  They said he jokes with us all the time and we just love him.  Yep, that is Jordan-always a smile on his face.  We don't have a solid dx and it makes it so hard to explain.  

It makes me so sad for all having to go through this.  I am so sorry if you have ever felt this from people.  It is a lesson well learned that you don't have to broadcast to the world you are ill even if you don't look like you are.  What strong people you all are and this helps me so much when I explain things to my son.  Even if I don't have solid answers.  I have learned so much about bravery from you and I need Jordan to remain strong and be all he can be.  You all have made me a better nurse.  THANKS TO ALL!  Thanks for letting me vent once again.

[ku111]

Thank you.  You all brought up really good points.  I need to help Jordan be his advocate.  It is so important that he learn his rights and learns to speak up in the right way and at the right times.  We have a 504 Plan as we were told he did not qualify for an IEP due to test scores.  They have been pretty good but I have done a few scoldings.  Jordan truly needs to see this plan and he is the one who needs to say what he can do and not do.  I think I have kinda gone about this wrong.  I also told Jordan that he can't expect kids to know how hard it is when he stumbles and his books go on the floor.  They would kick the papers around nomatter who he was and what was going on.  Most don't know he has problems and he doesn't want them to know.  I did tell him that is just kids being kids and not to take it personally.  I did need to hear that Jordan needs to learn to be his own advocate.  As a mom, sometimes need people to remind me of the importance of making him even stronger.  He is the key person that needs to be involved.  Thank you.

On a good note.  Met with our primary care Dr. and she was wonderful!  She ordered more tests to rule out a few more things and we should have those back next week.  She ordered Lyme, Lupus, thyroid, pituitary and etc...  She did say he seems to have all the symptoms of MS and suggested Mayo Clinic.  She sat with us for 2 hours and talked with Jordan.  She said she has a 16 yr old with MS and they are very similar.  She saw the thought processes coming and going, hyper reflexes with clonus in right, footdrop in left with little reflexes today, the skin moddling, numbness and tingling in right today and balance issues.  With eyes closed he just about tumbles over.  Over all may not find out a darn thing but can rule out others and she is definately a great advocate for Jordan.  She seems to be a smart cookie and is wonderful with Jordan.  So good day!  Nice to have a new set of eyes.

Thanks to all!

[Sumanadevii]

I should add it is also the responsibility of the student to present a copy to each teacher or staff member of his IEP before expecting the teacher to carry out what the modifications are for him/her.  They are not mind readers and have many students with IEP's.  Sometimes they may forget what the modifications are and need a slight reminding....which is why the IEP must be kept with the student at all times.

[Sumanadevii]

We taught both our sons that needed IEP's to carry a copy of it with them.  They understood it was federal law and could not be broken by a staff member at the school.  They were to remain respectful when showing the modification to that staff member.  They were to explain it was federal law.  

We did find not to leave it in the hands of school administration to get copies of the IEP to staff members because it took thirty days or more.  It is why they (the student) needs to keep a copy highlighting the modifications.  

It is another whole ballgame when a staff members decides to break federal law.  You can spend years waiting to go to court (silly) or teach the child to know how to advocate for himself.  Let him know that if the law is broken, he can go straightight to the principal's office and explain the problem.  If the principal does not act on it, he needs to call Special Ed and speak to the Superintendent.  

It costs the school nothing for these modifications.  usuallyusally a lazy staff member that won't be bothered.  Normally it was always settled at the school level.  I remember only once calling in the "force"....lol

[Lulu54]

Moving on an IEP is an excellent idea and I hope you are in a school district that is accomodating (and also has the financial means to do this).  Even though it is law, it can still be difficult to get action for.  Some districts will go through the motions but getting the plan into action might take perseverence on your part.

good luck with this next step,
L

[Sumanadevii]

Take Jordan back to his doctor.  Jordan needs to explain to the doctor that he needs modifications to his educational program due to his health.  After the doctor writes a letter to the school take it in hand, along with a written request for an IEP meeting as soon as possible.  Look up the laws in your state for how long they have to meet the request (It has been too long for me to give you the amount of days).

While waiting have Jordon (on his own) write what modifications he needs.  Don't worry if he doesn't get them all down the first meeting.  You are legally allowed to rewrite that IEP as many times as he wants during the year.

He may ask that he be given a seat in the back of the class thus allowing him to get up and move when needed.  He might ask that he be allowed five minutes extra between classes thus avoiding the crowds in the hall with fear of being pushed or his balance being off.  He may need days when he is unable to complete a test on time because he fatigues so and ask that he be allowed to finish in the library.  

Advise him that at any time during the meeting he is unable to get these modifications to close the meeting with a request that the Superintendent of Special Education (of your district) be present.  Teach him not to allow them to talk him out of what he needs!!!

Begin now teaching him to advocate for himself.  Expect his grades (if average IQ) to remain A's with a few B's.  Do not give in even if it breaks your heart.  He is going to need more discipline than your other children or he will not be prepared for the real world.

If you have any questions on writing an IEP please feel free to private message me.  I can tell you this..from experience...As long as your son shows the school he is serious about his education there is almost NO modification they will not grant.

Sumana