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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Ichthyosis and School: Initiating a 504 Plan

Near the end of preschool, we contacted the school district about creating a 504 plan*  for Cookie. Some districts have a specific district coordinator that handles special needs evaluation, while in other districts, the job falls to the school counselor. The process takes about 3 months to complete. Here’s what we asked for and went through to get it.

For the first call, I talked to the special-needs coordinator in our school district, giving her a quick Ichthyosis 101 lesson and how it applied to the kid who was about to enter their school. As with pretty much everyone we encountered in the school system, we gave them a printed copy of the highlighted pamphlet from FIRST (“Ichthyosis: A Guide for Teachers and School Personnel“) From there, the coordinator contacted the school counselor, the district’s physical therapist, occupational therapist, social worker, building principal, a kindergarten teacher and also interviewed our dermatologist and pediatrician. Then, the school personnel determined what evaluations were needed.

Within 2 weeks, the physical therapist and occupational therapist called me back and got permission to observe my son in his preschool classroom and talk to his Pre-K teachers. The school requested letters from the pediatrician and the dermatologist and finally, the coordinator called us to schedule a meeting for the whole team to discuss their findings with me and approve the need for a 504 plan.

The meeting was surprisingly formal. Eight adults (both parents, special-needs coordinator, principal, nurse, social worker,physical therapist and occupational therapist) met in a large conference room in the school. The coordinator read the reports out loud and circulated copies of everything for all the attendees to sign.

At the end of the first meeting, everyone agreed that Cookie needed modifications in his classroom. The physical therapist and occupational therapist found motor delays. The nurse agreed that he needed heat and activity management. Finally, they scheduled a final meeting for right before school to actually write the 504 plan. They wanted to wait so that the assigned kindergarten teacher would be involved. A few weeks before school resumed, the team met again with the inclusion of Cookie’s kindergarten-teacher-to-be, and at that meeting the 504 plan got written out, in detail, listing each and every modification they would make.

Here is the exact wording of my oldest’s 504:
1. If the heat index is about 82F, <name> will not participate in outdoor P.E. and recess activities.
2. <name> will be allowed extra time in the restroom.
3.  <name> will be allowed to take a break in P.E. when his endurance has waned.
4. <name> will be allowed to use a water bottle at school
5. <name> will be allowed to use markers or pens to complete work when he is in pain.
6. <name> will have access to hand cream provided by the parents.
7. Non-stick pads will be used on <name> for bleeding injuries and secured with tape only on the gauze.
8. If the temperature in an interior space rises above 81F  then <name> will be allowed to move to an alternate location which is below 81F
9. Modify expectations in P.E. class regarding grips, dexterity, walking and running games.
10. <name> will be given extra time if needed to complete assignments.

The final drafting process was really quite painstaking. The coordinator acted as the scribe, and would read aloud each proposed accommodation. We quibbled about language on a few of the items, and enumerating out the exact procedures the teachers and school administrators would carry out required an awful lot of details. Most of the details, such as “use softer balls” did not end up in the final plan, but the intent of letting him play catch without getting injured by a flying basketball is still there.

There are some accommodations which we requested but which the school system denied. We requested an air-conditioned classroom, but since the classroom buildings weren’t able to be modified to be air-conditioned in a cost-effective way, the school balked. Likewise, we requested air-conditioned transportation but had resistance there, too. Overall, we felt that the school personnel were being reasonable in their reasons for denying those requests, so we didn’t push the issue.  We ended up using heat index instead of direct temperature on the suggestion of the principal,  and it has worked well. We originally had 78F as the temperature cutoff, but that’s a tricky point – some days, 78 is windy, cloudy and beautiful, while others it’s humid and oppressive.

More importantly, from the start of the discussion, as parents, we made it clear that our goal for Cookie was maximum inclusion in all school activities. We wanted Cookie to participate in as many school activities as possible, and not to be singled out (either for perceived preferential treatment, or negatively). We also made it clear to Cookie’s kindergarten-teacher-to-be that we didn’t want him to use his ichthyosis as an excuse not to do things.

Now that Cookie is starting 4th grade, some of these things we originally put in his 504 plan have fallen by the wayside. But for the most part, the core of the list of accommodations is the same.

FIRST’s pamphlet, Ichthyosis: A Guide for Teachers and School Personnel, contains an extended discussion of issues relating to 504 plans and IEP’s for children with ichthyosis.

Parents, what differences did you experience when setting up a 504 plan or IEP? We would love to be able to compare and contrast language from 504 plans for children with ichthyosis, so please let us know if you’d be willing to share yours.

*A 504 plan is for children with medical needs which do not impact learning ability. It is slightly different than an IEP, which is a plan for children who have at least one of 13 learning impairments such as speech delays, autism, cerebral palsy, blindness, or Down Syndrome. Kids with 504 plans can have physical impairments like missing limbs or a broken arm, medical conditions like juvenile diabetes or heart conditions, or attention or psychological conditions like ADHD or bipolar disorder – all things that require modifications in classroom access or nursing attention, but where the child would still be in a normal education setting.

2 comments to Ichthyosis and School: Initiating a 504 Plan

  • Wendy

    So glad you had a good experience making a 504 plan. Unfortunately, your work has only just begun. Implementing a 504 plan depends on the teacher involved, and as the child changes classrooms and moves to other grades, the 504 may or may not be honored. It is up to the parent to talk to the teacher throughout the year, and to every teacher involved, if possible (even the music teacher!). The best advocate for your child’s rights is the child him/herself. It may not be their place to do this, but they must. Teach them to speak up, respectfully and firmly, and insist on getting what they need. And the best of luck to you. Sometimes everybody wins, and sometimes not.

  • Opal Harris

    If the 504 is in place it is a legal document and has to be followed by all teachers who have the child. If the district or teacher is not providing the accomodations or modifications they can be sued. Talk with the principal about 504’s not being followed. I also totally agree teach the child to advocate for their need.

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