Re: model IEP for school

[Guest guest]

Hi, . I can't answer all of your questions, but I will try with what I know. I am sure others will also chime in soon. Your first concern about him being subdued - my son is 15. When he was first in pain and then diagnosed he sometimes would feel sort of depressed. He was a good baseball and volleyball player and he had a real hard time dealing with the fact he could no longer play as well as before. It was a big part of his life at one time. He did continue to try to play, but it was hard. He has decided to not play high school sports and he had wanted to. The med does help (he takes methotrexate and Celebrex now) but he feels he is not as good as he should be since he lost almost 2 years while we tried different meds and things. I guess what I am trying to say is that he had a tough time at first coming to grips with the diagnosis. He had times when he would feel sad about it all. Basically, we have tried to encourage him in other areas. He now works out at a gym, volunteers his time with animals, and is looking at vounteering at a local hospital. He doesn't get as sad or frustrated any more. Perhaps, with your help he will feel better soon. It sounds like you are doing the right things. My son needed physical therapy at first and that was covered by our insurance. I don't know about the swimming being covered; perhaps if the dr or physical therapists orders it, it can be. We are lucky in that we have good ins and almost everything is covered well. does swim at the health club we joined and it has helped him. The problem with the swim team at school is that the water is kept too cold for him to be comfortable for the length of time he would need to be in. At the health club, it is warmer. And they have a therapy pool as well. does participate fully in gym at school. I don't know about IEP as my kids are in private schools, but even there they are willing to talk and help however possible. When was first diagnosed in 8th grade, he was allowed to do gym when he felt like he could, he could rest if needed, etc. At the high school, his counselor is available if feels the need to talk, his teachers are informed about the disease and are willing to help however needed. We have no trouble with missed days due to illness or dr visits (although, luckily, he has not missed too many). Well, just wanted to say Hi and welcome. I'm sure others will be able to help you even more. Michele (mom to 15, pauci jra and spondyloarthropy)

-----Original Message-----From: cmjoconnor [mailto:cmjoconnor@...] Sent: Friday, September 20, 2002 11:04 AM Subject: model IEP for schoolHello to the JRA community. My son, Carrick, aged 10, was diagnosed with JRA (polyarticular) in July. We began with prednisone for 2 weeks, corticosteroids in both knees, naproxen @ 750mg/day and methotrexate 1x/week. The medical team at Children's Hospital, Philadelphia recommended injections in every affected joint, but we only did the knees because we were ignorant about the steroids, so afraid. Next week he goes for injections in his hands and feet. The naproxen and methotrexate seem to reduce the inflammation somewhat but not as much as the steroids seemed to have done to his knees. My questions: 1) My son seems very subdued. I assume it is the affect of the methotrexate. I thought I should seek assistance from the school conselors. Has anyone experience with this? If so, what are the best approaches to them? Should I have someone come into class to explain what is happening to him for the benefit of the other children?2) I have also intitiated a request to have an Individual Education Plan prepared for him. Does anyone have suggestions for points to include in it? Do I ask for physical therapy? What do I ask for exactly?3) I do not have a handle on what to try to get covered through our medical insurance. Our doctor said that we should swim. I signed up for swimming lessons for him at a swim club. Does anyone have experieince with this type of physical therapy getting covered? Do we have to go through a physical therapist and go to a clinic to get the therapy covered? Sincerely, O'Connor, Hopewell, NJ

[Guest guest]

Welcome /Beckie, mom to Carrick!

Carrick, now that is a very unique name! I like it!

I'm known as Uncle Rusty Limbs to all and I too have jra/as now for 35 years. I have been of methotrexate for the last 5 months and I would say that, no it is not the drug that makes Carrick seem subdued, although right after taking the dose, you do tend to feel a bit fatigue.

I think Michele mom to 15 jra/as said it best, that dealing with this tends to make ones withdraw into themselfs.

We all know how hard it is growing up, facing the obstecles that are out there for kids today, let alone living with a chronic health condition too.

As Carrick comes to grips with this, (as well as an of of have) he will be fine.

I believe you are on the right path, especially with this fine group of people here in the jra community! No! rather the 'family' as you will soon see, we are all here to share, care and offer lots of prayers!

So don't hesitate to ask any question, and be qite certain, you will recieve an answer.

hugs! prayers! love to all!

Uncle Rusty Limbs

On Fri, 20 Sep 2002 16:03:53 -0000 "cmjoconnor" <cmjoconnor@...> writes:

Hello to the JRA community. My son, Carrick, aged 10, was diagnosed with JRA (polyarticular) in July. We began with prednisone for 2 weeks, corticosteroids in both knees, naproxen @ 750mg/day and methotrexate 1x/week. The medical team at Children's Hospital, Philadelphia recommended injections in every affected joint, but we only did the knees because we were ignorant about the steroids, so afraid. Next week he goes for injections in his hands and feet. The naproxen and methotrexate seem to reduce the inflammation somewhat but not as much as the steroids seemed to have done to his knees. My questions: 1) My son seems very subdued. I assume it is the affect of the methotrexate. I thought I should seek assistance from the school conselors. Has anyone experience with this? If so, what are the best approaches to them? Should I have someone come into class to explain what is happening to him for the benefit of the other children?2) I have also intitiated a request to have an Individual Education Plan prepared for him. Does anyone have suggestions for points to include in it? Do I ask for physical therapy? What do I ask for exactly?3) I do not have a handle on what to try to get covered through our medical insurance. Our doctor said that we should swim. I signed up for swimming lessons for him at a swim club. Does anyone have experieince with this type of physical therapy getting covered? Do we have to go through a physical therapist and go to a clinic to get the therapy covered? Sincerely, O'Connor, Hopewell, NJ

[Guest guest]

Dear , First let me intro. myself I go by Tree (Theresa) I'm a JRA veteran , I was diagnosed @ 8 finally after 5 yrs of not having the right answers. I am now 40 and going strong :) I haven't been able to respond on the list for months now due to computer problems that magicly cured themselved yesterday LOL Tis my luck Welcome to this group, feel free to vent or share anything you wish , because most, all, or some of us have been in your shoes at some point in our lives . I was 36 before I ever met another JRA child or Young Adult . I never thought I was missing anything , but always new I was very different. I know know where I fit in. 1. I was always what my mother called her cautious child, always quiet, a bit removed but interacting still. I also new I was different and never wanted to do anything to draw attention my way. This may be a bit of what your son is dealing with, I volunteered with a program that was called camp diversity , we took ourselves and props to the schools and to girl scout troops and taught about arthritis, joints, nutrition, experiencing limitations & assistive devices. Also similarities and differences, how to handle teasing and bullies. We did this through the arthritis foundation maybe your local chapter has a similar program that can come to your school. 2. I never had the benefit of an IEP program but I know quite abit about it due to my son having learning disabilities. I know that you can ask for Carrick to get an extra set of books that he can keep at home. That will help him having the pack them back and forth. Some schools have Physical therapy programs that the child attends in school ask for this as well he will definitely need to have accomodations for P.E. and to tell you the truth his evaluation will turn up alot of things that you might not think of right away. A 504 plan I think is what they call it when you have accomodations due to physical disabilities. Think that came about through the ADA ( American's with disabilities act) I know things change and it will be important for to you have all carrrick's teacher aware and somewhat understanding of his needs and how they can change monthly, dayly , hourly. If they don't know what JRA is than make it your mission to educate them ..it can do nothing but help your child. I use a great web site called www.wrightslaw.com They have alot of info on all kinds of IEP's , laws, books, etc. I get a monthly newsletter from them and I have learned alot from just reading it. Sbark meetings can be very overwhelming(sbark is a meeting between teachers, counselors and you in which you determine the goals and accomodations that your child will recieve). I take an advocate with me everytime so I know that my son is getting every advantage that he needs to succeed. My advocate is the woman that first evaluated my son years ago. 3. Swimming has kept me mobile, It was also the only sport that I could do wothout reprocutions. I also could do it well which raised my self esteem. Insurances differ so much that I don't wish to stear you wrong but i had better luck simply going to the nearest YMCA and applying for their scholarships for free swimming or reduced fair swimming. I know that alot of pools now also have the therapy pools with the very warm water but i do know that you have to have a doctors prescription to get into these , also there is a waiting list sometimes for these as well. I use hydrotherapy first, before I use pain meds. Therapy pools also have therapist that can see you at times to set up a routine if that is needed. It's very important that he learns to do ROM (Range of Motion) exercises, this will keep him as flexible as possible if he does them everyday, couple times a day if possible. I do them every morning some in a hot shower and the rest on my bed after my shower, this can greatly reduce any morning stiffness. Well quess I've bent your ear enough LOL Good luck and again welcome to this group. Your JRA friend, :):):):)Tree:):):):) Theresa Sappenfield Co-Leader/Tres. Faces support group Facing Arthritis with Compassion, Encouragement and Support Louisville, Kentucky model IEP for school Hello to the JRA community. My son, Carrick, aged 10, was diagnosed with JRA (polyarticular) in July. We began with prednisone for 2 weeks, corticosteroids in both knees, naproxen @ 750mg/day and methotrexate 1x/week. The medical team at Children's Hospital, Philadelphia recommended injections in every affected joint, but we only did the knees because we were ignorant about the steroids, so afraid. Next week he goes for injections in his hands and feet. The naproxen and methotrexate seem to reduce the inflammation somewhat but not as much as the steroids seemed to have done to his knees. My questions: 1) My son seems very subdued. I assume it is the affect of the methotrexate. I thought I should seek assistance from the school conselors. Has anyone experience with this? If so, what are the best approaches to them? Should I have someone come into class to explain what is happening to him for the benefit of the other children?2) I have also intitiated a request to have an Individual Education Plan prepared for him. Does anyone have suggestions for points to include in it? Do I ask for physical therapy? What do I ask for exactly?3) I do not have a handle on what to try to get covered through our medical insurance. Our doctor said that we should swim. I signed up for swimming lessons for him at a swim club. Does anyone have experieince with this type of physical therapy getting covered? Do we have to go through a physical therapist and go to a clinic to get the therapy covered? Sincerely, O'Connor, Hopewell, NJ

[Guest guest]

Theresa, Uncle :

Thanks so much for taking the time to respond

M. J. O'Connor

President

Rail Systems, Inc.

22 North Greenwood Ave.

Hopewell, NJ 08525

609-466-4114