Our 504 School Plan: One Family's Story
Our 8-year-old daughter Angelina has chronic, severe eczema. We have four children: Sabrina is 13, Samantha is 11, Angelina is 8, and Jonathan is 6. Sabrina and Samantha both have asthma. Somehow our son has escaped all illnesses so far.
Angelina first started showing signs of atopic dermatitis when she was a year and a half old. It began as just a small spot on the front of her ankle. We went to the doctor and were told it was a mild case of eczema. No problem, nothing to worry about. Just apply some ointment to the area two times a day, and voila . . . she would be cured!
Countless doctors, creams and ointments later the condition had spread to a majority of Angelina’s body and we were still trying to find help. Angelina’s hands and feet can get so bad that she can hardly stand, walk, write, or even hold a toy or fork. Many times the only thing we can do is put a clean sheet over the couch and let her lay naked on it because she is in so much pain. She has had countless infections and MRSA (methicillin-resistant Staphylococcus aureus), and she has missed a lot of school due to infections and pain. I have been to doctors who told me, “Just keep putting the ointment on her; she is overreacting when she tells you it burns.” Others just gave us a new cream and sent us on our merry way. “Check back with us in a few weeks,” they would say. I would be thinking, “I’ll do you one better and just call you tomorrow when she is crying in pain and this isn’t working.” We have total faith in the Lord that He is in control, but it is hard to explain that to a little girl and have her understand. When she couldn’t sleep we just sang hymns to her and she would eventually relax enough to fall asleep.
Finally in 2009, when Angi was 7 and in second grade, our lives changed after one phone call to the National Eczema Association. I had called NEA to ask some questions and they told me about the eczema conference. The next year it was going to be held in collaboration with Northwestern University’s Feinberg School of Medicine in Chicago. I asked why it was going to be held there and was told that Northwestern was opening a new Eczema Care Center and NEA thought that was a big deal. We thought it was a big deal too! We live near Chicago and I immediately hung up the phone and called Northwestern. The best day of our eczema-filled lives was when we met Dr. Peter Lio. He listened to ALL of our concerns and had answers and patience and, most important of all, genuine concern for our hurting child. He also was willing to work with us as parents and help us with anything we needed as far as school was concerned. He validated our child’s feelings and ours. That gave us new insight: just having someone understand was HUGE! Most people do not understand you when you say, “My child has eczema.” When you try to explain how severe it is, they think you are overreacting or maybe you are just one of those doting, smothering mothers.
With a doctor’s order we were able to request a school district–supplied tutor who came to the house and kept Angi up to date with what her would-be classmates were doing, so she could jump right in when she was able. This privilege is available to everyone who attends public schools who may need this option for a period of more than 4 weeks (with a maximum 18 weeks). We were so thankful our daughter was able to benefit from this resource. Now we were on a roll. We had a doctor who was helping us and we were being proactive about helping our daughter in new ways.
We realized that more had to be done to help Angi be successful in school.
My husband is a public school principal. We are very fortunate because this gives us information and insight we might not otherwise have. Consequently, we learned about 504 plans. A 504 plan is a provision of the Federal Rehabilitation Act of 1973, which prohibits discrimination based upon disability. We are lucky to live in a country that has this. Students with disabilities are guaranteed a free and appropriate education. A 504 plan can be used to address physical, medical, or learning issues, and all schools and school administrators and teachers must comply with it if necessary. In developing a 504 plan, you discuss and map out with the school all of the details regarding your child’s disability. You might talk about which activities your child needs to opt out of or what can be done to help your child to accomplish a certain goal or task. All faculty involved with your child are then made aware of the plan. Every 504 plan is different because it is based on a particular individual’s needs.
We immediately decided to establish a 504 plan for Angelina before the start of the next school year. Angi was excited and kept asking when we were going to “talk to the school about her eczema.” So we called the principal, and she arranged a time for all of us to get together. (This is when parents play a huge role; their participation in a 504 plan is just as important as the school’s participation.)
When we arrived at the meeting, the principal, assistant principal, nurse, school psychologist, and our daughter’s new teacher were all present. The principal and faculty were fantastic! They allowed us to explain the full extent of our daughter’s condition as well as her limitations. We already knew some specific things that would need to be done for Angi, but we were surprised when the faculty actually came up with solutions and ideas that we hadn’t even thought of, such as having a laptop available for Angi to type on when she couldn’t hold a pencil. We were very impressed and appreciated the understanding and willingness of the school staff to work with us for our child’s sake. Once we worked out all of the details and wrote them down, we were given a copy of Angi’s 504 plan. The principal told us that we would revisit the plan at the start of the next school year to see if any changes were needed.
The 504 plan has worked out great for us. It has been a major benefit. Being able to sit down and discuss Angi’s needs and learn available options and make plans with the school administration and faculty really helped everyone. We walked away knowing that we had done everything possible to help our child have a successful school year. Of course Angi is in a classroom with a wonderful teacher. Her teacher is understanding and willing to work with changes and limitations and she is patient about it. We cannot express the importance of this. It can mean everything to a child who is hurting and frustrated to be able to walk into a classroom with a teacher who truly cares. We are thankful for this teacher, and we’ve seen a complete turnaround this year. Angi she loves her teacher and she loves school again. She is happy! She still has eczema but is confident going to school because she feels supported and cared for. It has been a fantastic year so far and we look forward to the next!
504 PLAN TIPS:
- Be prepared for your 504 plan meeting! Bring information to share with everyone. The National Eczema Association’s packet Eczema: Tools for School is a great resource. Make sure you have it on hand.
- Bring pictures of what your child’s skin can look like. Visualization is key for people. We always understand more what we can actually see.
- Know what your child’s limitations are and what you think your child may need. Write all of this down so you don’t forget.
- Go with a positive attitude and be understanding. Be open to questions. While eczema is not new to you it may be new to the school staff and they will need time to process and understand how it effects your child.
- Be willing to help out! Setting up a 504 plan for your child may require extra work for the school or teacher during the year. Be willing to help in any area you can to alleviate that extra work. Additional demands can be hard on a teacher who has many other students as well.
- Be patient. If your child needs to get work sent home or testing done, give the teacher or school sufficient time to get it done.
- Be proactive. If your child’s disability or its effect changes during the year notify the school and ask to change the plan if needed. Keep the school and teacher informed if there is anything they need to know about your child.
- Don’t limit your child too much. There are some things your child may not be able to do out of necessity but don’t put too many limits on them. Let them try first. If they are having trouble you can always change the 504 plan.
If you have questions about setting up a 504 plan for your child, Laurie can be reached via email at firstname.lastname@example.org.
Angelina and her parents, Laurie & Jonathan, attended the 2010 NEA Patient Conference in Chicago, where Angelina participated in the NEA Kids Camp. The National Eczema Association would like to thank the Pilkington family for generously sharing their story.
Doctor Appointment Tips: Suggestions from the Pilkington’s
Have your doctor help you set up a “complete care plan” including:
• What to do on a daily basis
• How to make changes based on how the skin is doing
• Suggestions for over the counter products
Bring specific questions to your doctor, tailored to your child’s needs, such as:
• What will soothe my child’s pain at bedtime?
• Is there anything to put in the tub to give the skin relief?
• My child’s feet burn when I put cream on, is there a product that can help?
Ask your doctor about alternating medicines. We had noticed that when we put meds on our daughter’s skin it would work at first, then eventually stop working. Our doctor suggested alternating between 2 different ointments every 3 days or so which would kind of "trick" her skin and not give it enough time to become "immune" to the meds. This has worked for us.
After 3 months of 2 baths a day, Angi’s hands and feet look the best they ever have!