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  • 504 Plan or IEP??

    I am trying to research and wondering if anyone has one set in place at their child's school? How is it working and do you think it is beneficial? School starts on the 26th, Becca will be starting Middle School (6th grade) and I called and talked to the school nurse because I was concerned about her needing help into and out of the brace for PE. She mentioned her maybe needing a 504 plan and I asked her what it was and she said it was a form for special education and I immediately dismissed it because she is free to do ALL activities she just needs some help with getting in and out of her brace. We just got her brace on Wednesday and we are still weaning her into it. She is now wearing it for 3 hour at a time with an half-1hour break inbetween wear. Now I am wondering if she is going to need more assistance as school. It is uncomfortable to sit on the floor, wondering if she is going to have a problem with her desk and the chairs at school. Carrying her books. Also I was trying to explain to her that we might need to get her a new backpack. Currently she has a messenger bag that she uses and LOVES but I'm concerned about that the weight is bared only on the one shoulder with the messenger bag. She doesn't agree and thinks she can handle using her current bag.

    Anyways... I guess my big question is what modifications have you or the school made to make the school day easier for your kiddos.

    Thanks

    Kelly
    Mom to Becca (11)
    started wearing boston brace 8/13/08
    38* curve out of brace
    Kelly
    Mom to Becca (11), Mikey (8) and Tommy (3)
    Becca started wearing boston brace 8/13/08
    38* curve out of brace

  • #2
    Springdayzee...

    Hi Katie! I've been wanting to say hi to you-- but haven't had a chance. I'm glad you found the forum! I don't have a child with scoli-- just myself, but I'll still say a few things...

    I'm not real familiar with the regulations concerning 504s and IEPs-- I just end up reading them every year to know what accommodations I need to make for specified students when I have them in my library classes. I need to know what needs they have that differ from what I do (or expect) with the others students. Since I work with more than 400 students each year, it makes it a challenge to take it all in and comply. My basic understanding is that IEPs are written for students with clearly defined special education needs-- and there are very strict guidelines in that identification process. I think a 504 plan is broader and is a way to meet the needs for students who do not qualify for an IEP, but still have special needs that need to be met. Both provide specific ways for the school staff to address the needs of the specific student, and are bound by law to do so. I don't think I've said that very well, so hopefully someone else can do that better! And I may be off too, a little, in my understanding. It's been know to occur, maybe once a decade or so... (That is tongue in cheek...)

    I DO know that a 504 plan could cover things like not asking her to get on the floor and some of the other concerns you mentioned. And even some things you might take for granted like being able to go see the nurse if she is uncomfortable and needs to rest or take some OTC meds that you have at school for her. But it could also be that she doesn't want to be identified in that way and would rather tough it out and maybe be a little uncomfortable. Something like that depends on the child's personality so much. It's tough to be that age, and tougher still if you think you don't fit in. I've read so many posts from kids-- some who say they love their brace and their friends think it's cool-- and others who hate theirs and feel ostracized... Hopefully you'll get some good advice from other moms on the forum. And hopefully Becca will adjust and feel fine about her brace.

    As far as backpacks/bookbags go, it might be good to ask her doctor if she can continue with what she's used in the past. Then the "meany" would be him rather than you, if she needs something different. The main thing is for her to feel good about herself and yet be compliant with wearing her brace. Best wishes as you tackle that challenge! Susie
    71 and plugging along... but having some problems
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

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    • #3
      "504" simply refers to Section 504 of the Rehabilitation Act of 1973, and is regularly teamed with protections under the Americans with Disabilities Act (ADA).

      Section 504 prohibits discrimination against individuals with disabilities (those that are physical - and those that aren't physical, but affect learning). It guarantees a child with a disability/ies has equal access (as their non-disabled peers) to education. Accommodations and modifications may be put in place once the disability has been determined and an initial ARD (Admission, Review and Dismissal) meeting is held.

      BTW, both my kids were Special Ed (my daughter for Speech Artic - a lisp, and ADHD, and my son for triple learning disabilities, listening comprehension issues, ADD, dysgraphia, dyslexic tendencies). My daughter was ARD'ed in in kindergarten, so I literally spent 12 years fighting to make sure they got what they needed.

      Personally, I think an IEP (Individualized Education Plan) for a Boston Brace is overkill. If she needs help getting in and out of her brace during the day, I can't imagine a teacher or nurse wouldn't be willing to help her. I'm a little surprised the nurse suggested what she did vs. a simple "have her come down when she needs a hand".

      If she's uncomfortable on the floor, talk to her teachers. Surely they'd let her sit on a chair. As far as her book bag, let her try it ... if she needs to change, fine.

      I guess my point is plenty of us needed no accommodations to make it through the school day in a Boston Brace, and I doubt your daughter will either. The only tough thing is she's in the breaking in period/going through skin toughening, but you really will be surprised how quickly she adjusts.

      Lord knows, I'll be the first to say Special Ed protection exists for a reason, and if you need it, get it. That said, this isn't a permanent disability, and although you CAN receive accommodations for a temporary disability, I'd really try communicating with the school first before going through the hassle of a formal plan.

      Best of luck to y'all.

      Regards,
      Pam
      Fusion is NOT the end of the world.
      AIDS Walk Houston 2008 5K @ 33 days post op!


      41, dx'd JIS & Boston braced @ 10
      Pre-op ±53°, Post-op < 20°
      Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


      VIEW MY X-RAYS
      EMAIL ME

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      • #4
        Thanks Susie and Pam for your messages! Both are exactly the information that I need. It is hard since I don't have her schedule yet and I don't know who her teachers will be AND we will be in a new school since this will be her first year at middle school. So there are a lot of firsts and unknowns right now. School starts on the 26th and open house isn't until September 3rd. We do go to school on the 21st to pick up her schedule, IDs, and locker. So, as soon as we get her schedule I'll start emailing and calling her teachers to talk about accommodations she may need and I'm sure we will find out along the way about others that might come up. I have talked to Becca about maybe getting her schedule set where she has PE as her first or last class so she would only need to see the nurse once and just carry her brace home or to school. When the nurse mentioned the 504 plan I dismissed it right away after she explained to me what the 504 was. I explained to her that Becca is in no way limited in what she can physically do. It is just that she would need help getting in and out of the brace depending on what activities are taking place in PE that day and that her Dr gave her the OK to not have the brace on for PE. She seemed to understand that and I will speak with her again on Tuesday since when I did speak with her she was busy with the getting ready for school stuff. I am hoping that we will be able to meet with her AND her PE teacher before school starts so we can show them her brace and show them how it goes on and such.

        Thanks again for responding!
        Kelly
        Mom to Becca (11), Mikey (8) and Tommy (3)
        Becca started wearing boston brace 8/13/08
        38* curve out of brace

        Comment


        • #5
          Hmmm...we didn't have any problems...

          DD got her brace at Christmas time in 7th grade. She came back from Christmas break with it.

          We talked to the nurse. Basically, she took it off for PE and since she had lunch right after PE -- put it on after lunch, got a pass for being late to her next class and that was it.

          We did tell the nurse we weren't even sure what she could/could not do because we had no idea (other than obviously bending down to pick something up). The nurse was to e-mail her teachers and that was that. I did e-mail her teachers in 7th grade when she first got it but not in 8th. DD figured out how to adjust I guess. She never really had any problems where she needed anything formally written. I'm not even sure in 8th if the teachers knew about it although I know the nurse was supposed to e-mail them. It just never became an issue.

          We never did do a 504 plan for her (which is more than likely what you would do for a brace). DEFINITELY not an IEP -- trust me, I have 2 sons with IEP's and there is no way I would want to go through that just for the brace. The brace is NOTHING compared to all the tests required to get the IEP. From my understanding 504 is for medical/IEP is for learning disabilities.

          One thing to make your life easier if she is taking the brace to/from school is to get a pillowcase/laundry bag type of bag for it. That was recommended to me and worked beautifully. No one had any idea what was in the bag & no problems, etc... DD ended up making a travel size duffle bag in 7th grade Home Ec and her brace just happened to fit in it. That's not why she made the bag that size but just happened to work nicely, so she used that for her after-school things that she had to take her brace off for.

          Basically, she surved most of 7 & all of 8th with the brace with no extra plan in place. Just going to the nurse's office to take it off before PE and then going back to the nurse afterward to put it on. She had PE 2nd hour in 8th grade (they quit doing 1st hour PE because they had too many kids missing "oversleeping" just to miss 1st hour running).

          I just wanted to give you our experience with it.
          Last edited by Beckymk; 08-18-2008, 11:18 PM.
          Becky
          Mom to DD (15) with S 48*+ curve
          Had her surgery March 9, 2009

          Comment


          • #6
            We start school tomorrow, and thanks for the info on the 504, I might need that one.
            In elementary, I just talked to the PE teacher, explained the situation for each child, and it was no problem. Depending on the activity, and temperature, for the day, the kids could leave on or ask for assistance with the brace.
            In the classroom, I talked to the teachers and explained limitations while they got used to the brace. They normally sat in an area with a bench or chair close by till they were more comfy on the ground.
            Last year we had issues in 6th grade PE because eventhough we had a doctor's note (she has growth rods), my daughter still had to sit in on the class and would only receive a B+, unless she did a book report (like her teacher didn't have them doing enough of those already, and she felt that it wasn't fair to get an A for no work, the kid had a doctor's note). I asked about an IEP, but was told they prefered not to do it for that. I dropped off this year's note last week, guess what, her first class is PE. I'll inquire about the 504 if they don't move her this week.
            Emily

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            • #7
              Originally posted by ecnw View Post
              Last year we had issues in 6th grade PE because eventhough we had a doctor's note (she has growth rods), my daughter still had to sit in on the class and would only receive a B+, unless she did a book report (like her teacher didn't have them doing enough of those already, and she felt that it wasn't fair to get an A for no work, the kid had a doctor's note).
              Good Luck.

              Written work is required in our school if they are out of PE for medical reasons. PE in our school district is a required course for graduation, it even counts for the GPA in High School. I know when DD goes to have her surgery, she is going to be basically having to do some sort of written work to pass PE the 2nd half of Freshman year. Usually they go to the library during PE time and work on it there. Then again, in the past, ALL the kids have had written quizzes that they all get graded on in PE.
              Becky
              Mom to DD (15) with S 48*+ curve
              Had her surgery March 9, 2009

              Comment


              • #8
                Braydon has had a 504 plan in place since 1st grade (he's starting 8th grade this week). His schools have been very accommodating. They even came up with suggestions I hadn't thought of that have been very helpful to him. Braydon is no academically delayed, so no "special education" needs are required. His 504 plan is for any physical accommodations the school must provide.

                Besides congenital scoliosis, Braydon has chronic GI issues. His 504 says that he can go to the bathroom as needed, without asking permission. He also sits in the back of the classroom so less chance of someone bumping into his back. He has expansion surgeries every 6-8 months, so the 504 also says he can leave class 3-5 mins early so he is not in the crowded hallway between classes (ie, the salmon run). There is more, but that's the general idea.

                Most schools (if they care about these kids at all) will make these adjustments and accommodations without official documentation. By communicating your child's needs with ANYONE who deals with your child, you are helping them already. For general scoliosis issues (ie, occasional back pain, help with braces, etc.) you may not need official paperwork/meetings. However, I appreciate the official meeting because then I can speak face-to-face with them and help them understand my child's needs. Getting the best education is the goal. If the kids are uncomfortable or embarrassed or whatever, the school is not providing an equal and optimal education.

                Good luck.
                Carmell
                mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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                • #9
                  My daughter had a 504 plan after her surgery. It forced the school to give her a set of books for at home and a set in the classroom (each teacher was responsible for giving her her book each day). It also allowed her to get up and walk around if she was experiencing pain. When she got her drivers license, it allowed her to park in the front parking lot in a handicap place (it was too dangerous for her to park in the student parking lot). It also placed limitations on gym class. I wish they had had this when I was in school and had my surgery. I had so many problems from teachers when I was in my body cast.
                  T12- L5 fusion 1975 - Rochester, NY
                  2002 removal of bottom of rod and extra fusion
                  3/1/11 C5-C6 disc replacement
                  Daughter - T7 - L3 fusion 2004

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