Date: 03/11/2013

Denise Benedetto

I have been a teacher for the past 25 years, so when it was time for my son, Marc, to enter kindergarten 11 years ago, you would have thought that it wouldn’t have been a big deal.  But it was.  Marc was born with lamellar ichthyosis and I knew there would have to be provisions made for him to have an education that would suit his needs.

I didn’t just want to show up at kindergarten registration and say, “Hello.  This is Marc and he has ichthyosis.  This is what he will need…”  Instead, I actually went to the school the year before he was to begin.  I made an appointment to talk to the principal and the school nurse.  I brought pictures of Marc, from birth to the present, so they could see what ichthyosis looked like.  I was also armed with all my literature from FIRST.  In addition, I had a letter from Marc’s dermatologist which explained his condition and the special accommodations that he would require in the school setting.

The school and I decided that the best way for Marc to receive all of his accommodations was to create a 504 Plan.  The 504 Plan refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act.  This section specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including schools.  A 504 Plan spells out the modifications and accommodations that will be needed for students to have an opportunity to perform at the same level as their peers.  In Marc’s case, this meant that his classroom needed to have an air conditioner (we live in New York and none of the schools are air conditioned), he would be allowed to visit the nurse’s office to apply his cream, he would have access to a water bottle at all times, and if he was to get too hot while he was participating in gym, he would be allowed to leave and go to the nurse’s office to cool off.  He would not be penalized for not completing the activity or leaving the class.  We also included ways in which we would handle outdoor recess as well as art, music, gym and library classes.  All of these classrooms would not have an air conditioner.   

When creating a 504 Plan, you need to be reasonable.  I knew they would not air condition the gym or lunchroom for my child.  The school and I knew that the first year Marc was in school would be a trial for everyone.  He had never attended a public school before and they never had a child with ichthyosis before.  I was able to contact them at any time to make changes to the 504 Plan if they were necessary.  We agreed that since Marc would spend most of his day in his classroom, this was where the air conditioner would be placed.  I wanted Marc to be like every other kid in school which is why I also wanted to keep his 504 Plan general and not too specific.  For example, I wanted Marc to enjoy outdoor recess as much as he could.  The nurse asked me at what temperature should Marc not be allowed outside to play.  I didn’t want the school freaking out and not allowing Marc outside if the temperature reached 70 degrees.  Marc was always pretty good about telling us when he got too warm and I knew he would be the same way at school.  So we decided that Marc would go out everyday and if he said he was too warm, he would be allowed to go into the nurse’s office (it was air conditioned) to cool off.  The same would hold true for gym, art, music and library.

Another item included on his 504 Plan was to educate all staff about ichthyosis.  Staff included teachers, custodians, secretaries, bus drivers, cafeteria workers, anyone who would come in contact with my child.  This was very important because I didn’t want anyone not to believe Marc if he said he was too warm or needed a drink.  It was vital for them to know about ichthyosis and what to do if a situation arose.

Finally, I was eager for Marc’s new classmates and their parents to be educated about ichthyosis.  This, of course, couldn’t happen until the school year started.  The school psychologist took care of the kids one day when Marc wasn’t in the room.   I talked to the parents on Back to School Night.  With the teacher’s permission, I spoke to the parents about Marc, ichthyosis, and FIRST. 

Marc is now a sophomore in high school, so needless to say, we both survived kindergarten.  His 504 Plan hasn’t changed much since it was created.  The school has been very accommodating and we are very fortunate.  As long as you remain an advocate for your child, and teach them how to advocate for themselves, he/she will have a very successful educational career.

Editors Note:  Denise created an outline of this information.  It is a helpful tool to help you plan for your child's needs.

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