I’m leaning towards…

In this 4th installment (of 10) regarding the LPA National Convention we attended this summer in DC, I am writing about 504’s (vs. IEP), and why I think it will be enough for us.

A 504 is part of the Vocational Rehabilitation Act of 1973, and prevents discrimination against individuals with disabilities from any institution that receives federal funding. In our case, this would be schools. Children considered for a 504 are often not eligible for many accommodations regarding emotional and cognitive considerations, but have a condition that may affect their ability to function in school- physically. This is in comparison with an IEP , which is an Individual Education Plan, and goes beyond what children need physically. Many times, these services include occupational therapy (OT) and speech, as well as reading, further assistance in learning techniques, etc. There is a lot of testing before this document is created, and it is legally binding. An IEP can follow you wherever you go, and act as the plan for your child’s needs.

For us, I think the 504 plan is enough. Addie’s cognitive skills are at or above her age range, and her ability to push through a crowd is uncanny (is she living through me and my punk rock years?). However, things that can be addressed in the 504 are much needed and will make Addie’s life easier and safer when she is enrolled in school. An IEP can also address these issues in the “Accommodations and Modifications” portion, and thus you don’t need a 504 with one. However, if there are no cognitive issues or further therapies needed in school, perhaps the way to go is to just research all adaptations needed and have them all in a 504 that you discuss with your chosen school well in advance of your child’s start… there are always things that need modification to their modifications!

For a 504, you will have to talk to your school the year before your child attends. Because there is no extra funding for 504 plans, you might have to be a bit of a squeaky wheel… a well-liked squeaky wheel, at that! Keeping that in mind, if you have any tools that would be helpful (hooks, stools, screws, plans, etc.) in aiding any modifications, they will most likely be much appreciated.

… I think my point may be understood. With an LD (learning disability), you are certainly eligible for an IEP, but with Addie’s current track, we are more worried about her physical limitations. For us these are inclusive of everyday things, but also, the things I hope I never have to know, like in a fire, are all doors able to open for her?

Considerations for your child should be made with them. Visiting the school with your child and a tape measure will better arm you, as a parent or caretaker, to know what is needed or lacking. The process can take a while, and to be inclusive, your child, yourself, teachers, other staff, the principal, counselors, therapists, service providers and (if available) the director of special education should all participate.

There is so much to think about, and it call all be overwhelming, so I will leave you with this…

Consider:

  • Walking, or riding in the car?
  • Procedure for riding the bus, not just to go to school but for field trips- is there a booster, car seat? Are there belts at all? An aide?
  •  Is the parking lot easy to cross? Are there blind spots?
  • Are all walkways paved?
  • Are doors accessible with handicapped buttons at a reachable level?- all doors need to open easily for your child, especially in an emergency.
  • Are there lower lockers or cubbies?
  • Is the playground safe? Are there people to monitor climbing and falls?
  •  Is there a stool or chair for your child’s feet so they aren’t hanging in the air? Being comfortable is important to learning, and the health of your child’s hips, back, knees, etc. Check out the Tripp Trapp Chair!
  • Are classroom materials within reach?
  • Is gym class safe and is your child being included?
  • Are all bathrooms accessible- doors, toilets, sinks, soap dispensers (NOT just hand sanitizer), paper towels, lights, mirrors, sinks, faucets?
  • Is the water fountain accessible?
  • Can your child reach the cafeteria line? Trays? Food bar? Utensils, napkins, condiments? Are they comfortable at their lunch table?
  • Safety drills… are they safe for your child?
  • Is there a school nurse there at all times? What times is s/he there?
  • Does your child need more time to get to and from class?
  • Can your child carry the required texts through the halls? Can there be a home set and school set of texts?
  • Lastly: Was your child involved in this planning?

There are so many things to think about, it is hard as an AH parent to think of all the things our child would need. And an LP parent may forget those schooling days and what was hardest for them. When choosing your plan, and executing its initiation, know that things will always need revision and compromises will need to be made. Sure, compromising safety isn’t in the equation, but perhaps donating some of your own items will help make your child’s learning experience all they deserve.

With just a few years before Addie heads out the door and into the capable hands of our public school system, my mind is firing away at all the holes that will need filling upon (and before) her arrival. I am so thankful that I was able to attend the workshop that described all of the necessary items to me and taught me how to make her educational experience both comfortable for her, and retain my sanity (aka Addie’s safety).

Please- share your experiences!

16 Comments

Filed under Achondroplasia, Community, Educate/Adovocate/Make Change, Parenting/Family/Lifestyle

16 Responses to I’m leaning towards…

  1. I am also thankful that you were able to attend the workshop and are well educated so you can be as prepared as possible – I am in awe of your strength and happy that Addie has such a capable Mommy.

  2. Titi

    Great blog, Chelley. I learned a lot. One thought – I would caution you to be open to and perhaps reconsider the IEP. IEPs are, indeed, used for children with special learning needs — given Addie’s genetic IQ predispositions, and early signs of intelluct, she may well benefit from an IEP. And don’t pooh-pooh me as the doting Titi (which I am); I have recently spent a lot of time in this space and I am speaking from research and expereince.

  3. You’re on top of it! We are always our kids best advocates! I always feel that in being an involved parent, we can help guide our kids, help fill in and bolster where extra help is needed and provide enrichment opportunities where they excel or have a special interest. Your preparation is a gift for Addie!
    Leah DeCesare – Mother’s Circle recently posted…5 Ways to Enjoy Parenting MoreMy Profile

  4. Chelley, you are such an incredible resource for AH parents (all parents) and I’m so thrilled that you were able to attend this workshop to enhance your (already amazing) knowledge. All of these are incredible points to ponder. Stay strong. Know I’m always rooting for you and Addie no matter what. XO
    @JackieHennesse1 recently posted…Have You Ever Been Ghosted?My Profile

  5. As always, your passion, your learning, your sharing, your knowledge and your constant quest for knowledge is inspiring to all of us. As I read through your “considers”, I stopped at each one to really consider each one. You bring such power to this world through your beautiful, brilliant Addie. This is your great gift, and I am honored to be your “student”… xo
    Sharon – MomGenerations.com recently posted…CharityWater.org, BB’s Clean Water for Christmas #4 and our Thanksgiving PigMy Profile

  6. So great to attend workshops and get prepared with where you need to be! You are such a great mom!
    Kristin Wheeler (@MamaLuvsBooks) recently posted…Holiday Gift Guide 2013: Tagamoto “Code the Road”My Profile

  7. Joy

    My son isn’t an LP but he does have dyslexia and Asperger’s so I’ve gone the IEP route for many many years (he is in college now, so that is done for me, he now has to advocate for himself.) I’ve had experiences with both helpful schools and non-cooperative schools. I’m currently working with a friend of mine who has a son with ADHD and Anxiety, neither of which is a learning disorder so she has a 504.

    I’ll tell you the difference I experienced with an IEP for my son is night and day from what my friend is experiencing with her son’s 504. Having the law (and no doubt, extra money) behind the IEP can really be your best friend. When a teacher (I’ve found older teachers to be the least cooperative in this area) refuses to make accommodations being able to go to the principal with that piece of paper can make things happen.

    Also with an IEP you have the schools resource teacher in your team and they are trained to think of accommodations you may never have thought of. I know my email address isn’t posted in the comments, but maybe you can see it as the blog owner? If so, feel welcome to email me if you have any questions or concerns about IEPs or 504s. After all of these years I’ve got a lot of experience dealing with the bureaucracy and I’m willing to give advise, even three years from now!

  8. Shell

    I am always so impressed by you- you are such a wealth of knowledge! And such an awesome mama! xo

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