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  • 504 plan

    Hello,

    Did any of you fill out a 504 plan when your children returned to school? Would there be any reason why I wouldn't want one?
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  • #2
    Hi Melissa,

    I talked to the school counselor about setting one up when my son returned to school, but we were able to work everything out without one. I think the 504 plan is more for long term special needs (Carmell is very knowledgeable, I hope she can clarify this. For us, it would have meant a big meeting with school admin., having it all approved by district...it would have been quite a process. I was ready to do what I had to do, but instead I spoke with school counselor and nurse, wrote a letter to the school (for Joe's file) explaining his surgery and what accommodations we were requesting along with a note from the dr. explaining his limitations. They were more than happy to accommodate and allowed for everything I asked for. (Almost none of which Joe used, by the way). Talk to the school first, you probably won't need one (so many of these kids recover quicker than we think they will). I've been reading your surgery post, and am glad to hear Nicole is doing well these days.

    Renee

    Comment


    • #3
      Thanks, Renee,

      I had the doctor send the note and the counselor and nurse wants to do a temporary 504 plan. It sounds as if Nicole and I are just meeting with the counselor and nurse next week to fill out paperwork. I am so nervous about Nicole being in school with all the insensitive teens stampeding through the hallways, etc.

      Nicole has to leave class early, she already has her second set of books, she has to miss gym, she has to stay with a teacher during a fire drill. I can't imagine her not doing these things. Are you saying that your son didn't do those things?

      Did he bring a pillow? I know it is probably worse for a boy, not wanting to stand out, etc. Also, if he did any of these things, how long did he do them for?
      Melissa
      From Bucks County, Pa., USA

      Mom to Matthew,19, Jessica, 17, and Nicole, 14
      Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

      Comment


      • #4
        We never did a 504 plan, it was never suggested, I worked everything out with the guidance counselor and one lady in the front office. Kids are pretty wild in the hallways between classes, I had alot of concerns about that. My daughter refused to leave class early though, she said the most fun in school is in between classes--reluctantly, I didn't insist on it, she hasn't had any issues with it though. She doesn't have gym scheduled till second semester (end of Jan), the doctor has said no gym till at least middle of Feb. Sounds like you are on target and have everything planned as it should be, Nicole seems to be doing very well with her recovery.

        One funny but not so funny story to tell (your comment about the insensitive teens stampeding made me think of it) - the first day my daughter started her 1/2 days of school, we walked in at what happened to be lunch time for her grade. Just as we opened the door, about 4 of her friends had seen us coming in, and were running with open arms to my daughter, ready to jump into her with hugs. I "freaked" and yelled no, no, no hugging, be careful. After all the weeks of shielding her, it happened so fast and I wasn't prepared for that. Luckily, I caught them in time and no harm was done, but it shook me up. Even with the best of planning, the unexpected still can happen, you just have to keep praying!

        Comment


        • #5
          Hi Melissa,

          Most of the accommodations were for about 6-8 weeks. 2nd set of books and no P.E. were for the remainder of the year, of course. The other things; permission to get up during class to stand or stretch if needed, leave class early or late to avoid crowded hallways, he was given an elevator key (lots of stairs), hallway pass to use anytime to see nurse, bathroom, etc., these things he never used. He was taken out of class once before a fire drill by the school nurse. I don't think he appreciated it, but it made me feel better when she called to let me know. He could have brought a cushion to use, but never did either. That's a boy for you! Even if he chose not to use them, I'm glad everything was in place just in case he needed it.

          Renee

          Comment


          • #6
            Thanks so much for your input. I am always nervous when her friends see her and want to run up and hug. I am very afraid of that, as well. I wonder if I am over-reacting about everything. I can't believe your kids were in the crowded hallways and everything was okay. That's great.

            Did your daughter have a pillow with her?
            Melissa
            From Bucks County, Pa., USA

            Mom to Matthew,19, Jessica, 17, and Nicole, 14
            Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

            Comment


            • #7
              I think I tend to worry and over react about everything, too. I was very concerned with the crowded hallways, but that doesn't seem to be a problem. She hasn't been having any pain, but she's still extremely sensitive to anyone touching her back. And, my daughter has refused to bring a pillow to school, she claims she does not need it. I haven't heard any complaints about the chairs, so, she must be doing ok with them. She's going to go full days to school this week, we'll see how she manages, luckily it's a 4 day week since today was a holiday for her. Until now, she's been able to continue to sleep in, I think this week will be tougher on her than she realizes, we'll see. We were away for the weekend, our first little trip back to see family she hasn't seen for awhile, she did well with the car ride. It was only a 3 hour drive, but we got out to stretch every hour or so. I definitely worry more about things than she does, she just seems so happy and relaxed about this surgery being behind us now. Nothing seems to faze her too much, she's pretty much back to enjoying her life. I have to keep reminding her of the restrictions she still has. Hopefully your daughter will have an easy experience getting back into school and such, it seems like she's doing very well.

              Comment


              • #8
                Melissa,

                I've been MIA for a while - Braydon had leg surgery on Sept. 4 and has had 2 surgeries since to clean out infection (2 different areas of infection - sheesh). Doing IV antibiotics at home for 4 weeks... I haven't had a chance to log in lately.

                I hope by now you've worked things out with the school. Braydon has a 504 plan because his issues are chronic/long term. I would hope that having an understanding administration and teaching staff means that Nicole will have a positive experience easing back into school.

                I went to WalMart and bought several barstool cushions. They fit nicely over the back of most school chairs. This is a little easier/less cumbersome than carrying a pillow around.

                I also would arrange with the teachers to allow her to leave class 5 minutes early. This will prevent her from being in the crowded hallways during the "salmon run" between classes. Braydon was allowed to leave class early for lunch, too, so he wouldn't be pushed standing in the lunch line. He had an official hall pass made for this purpose.

                Good luck and let us know how she's doing.
                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/

                Comment


                • #9
                  Carmell,

                  Thanks so much. I hope all is better with Brayden. Are you saying that you left the cushions in his classes? I guess that wouldn't make sense for Nicole because in middle school she has so many classes. So she will have to carry around a cushion or whatever.

                  In everyone's opinion, how long do you think she will need the pillow and to leave classes early. Do you think when she goes back to school after Christmas break she could just do what everyone else is doing. She is almost 4 weeks post-op now.
                  Melissa
                  From Bucks County, Pa., USA

                  Mom to Matthew,19, Jessica, 17, and Nicole, 14
                  Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                  Comment


                  • #10
                    Hi again, Melissa,

                    All of the school stuff will depend on how Nicole feels. If she is hyper-sensitive to anyone touching her back, or having people invade her personal space, I'd plan to have her leave class early for the entire year. Let her body heal nice and well. It won't hurt anything. When Braydon had his cushions, he had 3 different classes. The cushions were left on each chair. I know in middle and high school that is harder to do. Another option may be to have her sit in the back of the room, near the door of the class. Then, if she needs to stand and stretch her back, she can, without disrupting the discussion/classwork. First, getting permission from the teachers, obviously. When Braydon started middle school, I asked him if he needed a pillow for his chair backs, and he said no. He isn't in one chair long enough for that to be a problem. I think a pillow thing is something she may or may not want to deal with. If she has one or two very good friends in several/each class, they may want to be "helpers" to carry a pillow or to carry supplies, if needed. Sometimes it is a positive experience to have friends be helpers, other times, it isn't so positive. Again, depends on her and what her wants/needs are.

                    As far as a 504 meeting, for us it isn't a big ordeal like someone mentioned above. Yes, you have a meeting with the principal, school nurse and all teachers involved in her education, but you want to do that anyway. This way they can hear your description of what you want/need firsthand. I always took xrays and the doc's letter so I had "back up". The people at the school have always been very supportive and offered suggestions that I didn't even think of. They thought the xrays were cool! We've had very positive experiences with school and 504 plans.

                    I think Nicole needs to be very involved in these decisions. She knows how she feels and what the atmosphere is like at school. You both will do great, as usual.
                    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/

                    Comment


                    • #11
                      As a teacher, I got one for my daughter. Your daughter will always have limitations in gym class and there are other issues. With one, you will always be able to have a set of books at home so she doesn't have to carry them. Even after limitations are lifted, it is still not a good idea to carry a lot. My daughter is finding that out now that she is in college. She has to run back to her car between classes to get her next set of books. Seating can be a problem also. Some desks hit right at the top of my daughter's rod. She also has a handicap parking permit because of carrying things. She had it in her 504 plan that she got to park in the teacher's lot in a handicap place because it was not safe for her to back out of a place in the student lot. She has a hard time twisting when backing up. Setting one up now will help prevent problems in the future.
                      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

                      Comment


                      • #12
                        Thanks so much for all of your advice and replies.

                        I think as time goes on, Nicole will know when she is ready to let go of certain things. Just like now she knows she is ready to go back to school. She keeps saying, "I can't believe I can't wait to get back to school."
                        She also can't believe how normal she is feeling. I warned her that this is the time that kids forget that even though they feel good on the outside, their fusion has not taken place and they still have to avoid bending, lifting, and twisting.
                        Melissa
                        From Bucks County, Pa., USA

                        Mom to Matthew,19, Jessica, 17, and Nicole, 14
                        Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                        Comment


                        • #13
                          This is a lot of good information. I remember asking about the 504 plan when Alexander got his brace but I was told we didn't need one. I know Alexander wants to be just a regular kid but now I'm thinking I need to pursue this further. He's in an alternative, somewhat outdoorsy K-8 school & they've been very understanding. He doesn't have to switch to different classrooms for the most part but he does have a lot of stuff to carry around in his backpack. It has wheels though so he drags everything around on the ground. I wonder if it is too heavy - it's at least 10 lbs with everything in it. He pulls it with his higher shoulder & I've tried to get him to equalize which arm pulls it but he keeps using his right arm. I need to ask the surgeon about so many things...
                          Laurie

                          Mother of Alexander & Zachary:
                          Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
                          Zach is 13 years old and very energetic.

                          Comment


                          • #14
                            Laurie,

                            I wasn't planning on getting a 504. I had Dr. Dormans fax over some accomodations to the school and they said it would be best to do the plan. We agreed that we would be re-visiting some of the accomodations throughout the year. We will always keep the text books at home. But at some point she will take the steps and possibly leave class with the crowd.

                            Can anyone tell me at what point their children just went into the halls with the crowds?

                            Also, when she is in high school and one year post-op, will she still have text books at home?
                            Melissa
                            From Bucks County, Pa., USA

                            Mom to Matthew,19, Jessica, 17, and Nicole, 14
                            Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                            Comment


                            • #15
                              Joe had a 2nd set of books up to 1 yr. post op. That meant the 2nd half of freshman year and 1st half of sophomore. At the start of the sophomore year we had to get another letter from the dr. even though the original letter stated the extra books were needed until he was 1 year post op.

                              Renee

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