If you’re child has learning delays school didn’t necessarily stop at the beginning of summer for you. Maybe your child has an IEP (Individualized Education Plan) and while you made plans to have a fun summer you also made plans to work towards your child’s IEP goals? For example, our daughter went to ESY (extended school year) to help her retain and work on emerging skills in math and reading. In addition, we joined summer reading programs and visited her school reflex math website almost daily.
Going back to school can be a stressful time for parents as we try to get everything our kids need; the school supply list, the back pack, the lunch box, the drink bottle, the new shoes, and uniforms can all put a dent in the wallet and then there’s getting your kid(s) back on a decent sleeping schedule and finding out when the school will have Open House. It’s enough to drive you to drink! Well, if you have any money left over to spend on it, but I digress!
When a parent of a child with special needs prepares for the new school year there’s a little bit extra to plan for and that’s what I wanted to focus on. Our daughter lives with epilepsy which is a disorder that affects 65 million people worldwide, 45,000 of which are children, under the age of 15, living right here in the United States. Epilepsy is a diagnosis usually given to someone who has 2 or more unprovoked seizures and a seizure, in its simplest term, is an abnormal electrical discharge in the brain.
The first thing we prepare for our daughter’s return to school is an “Emergency Information Sheet” and we make 10 – 12 copies so every person who comes in contact with our daughter has one. On this sheet I include her name, a recent picture, medications, allergies, first aid, emergency contacts and a brief description of a typical seizure for her. Basically I put everything I would want the school or a paramedic to know, to take care of my daughter, if for some reason they couldn’t reach me. This is a quick reference so I would try to make it no longer than two pages. Parenting Special Needs Magazine also offers a “Get To Know My Child” form you can find if you click the following link –> 19_about_me_forms.
Emergency Information Sample (Word)
If your child has rescue medications, like our daughter has for her seizures, call a meeting with school administration and the school nurse to find out what forms you and your child’s doctor will need to complete in order for the school to be able to administer that medication. Also, find out where your child’s medications will be stored and who will be trained to administer them. Some schools allow for medications to be stored in the classroom as long as they’re locked away. Another important question to ask is who administers your child’s rescue medications in the event the school nurse is off or on a school trip and are they trained. Our daughter’s rescue medication is rectal which might be uncomfortable for someone who hasn’t used it before.
I was really upset to hear about a school my friend’s son attends, not far from my daughters, giving her a hard time about having two children accompany her child around the school, even going so far as to tell her she was stifling her child’s independence. Quite frankly, I was disgusted! A seizure is no joke and can happen at any time, even to a child who hasn’t been diagnosed! Our school witnessed my daughter suffer a 15 minute seizure in the classroom and knew immediately the importance of safety and getting help! I have to give our school credit as they made the two child rule a classroom policy so as not to make my child feel different or singled out and the kids were none the wiser, epilepsy wasn’t even mentioned.
This leads me to a question we’re often asked…
How to discuss epilepsy with peers? We’ve always been very open about our daughter’s epilepsy, we feel the more people know the safer our daughter is! I found a book when our daughter was entering kindergarten called “Taking Seizure Disorders To School” and instantly fell in love with it! It explains epilepsy in a very kids friendly way and even helped me discuss epilepsy with her cousins. It’s not to long and it asks things at the end like “are seizures contagious?” We usually send it in to the teacher and ask her to read it to the kids so they know what is happening and what to do if our daughter has a seizure.
Another thing we like to do is call an IEP (Individualized Education Plan) meeting at the beginning of the year to discuss and/or amend our daughter’s goals for the upcoming year. It also gives us a chance to meet any new team members (if there have been staff changes) and communicate what we expect from her teachers.
We strive to make our daughter’s learning experience as normal as possible, while making sure all things are in place to keep her safe. It is so important to stay involved and keep open lines of communication with your school. Get to know your state as well as local laws when it comes to your child’s education and safety. If there’s something you don’t know research it or ask another parent! Knowledge is power and knowing your child’s rights is very important!