Talking about Neurofibromatosis is easy for me...I love to educate and help people understand this disorder that affects my family in so many different ways. The key to being comfortable talking about NF, is making sure I, myself understand it. (not an easy task, I know)
The more I learn about NF, the easier it is to talk and teach others about it...Even *gasp* TEACHERS! :)
Steps to Ensure a Successful School Year
These are based on tools I personally use, for my NF children
1. Contact the School in Advance! This is a MUST if your child has a set IEP or other specialized plans. If this is your child's first year, it is still important to contact the school EARLY ON, to let them know of any special needs your child may have.
You don't want to wait until the FALL to register your child--trust me!
When registering, you MUST inform the school (in writing) indicating your child's special needs- Include reports from the doctors, IEP's, Neuro-psych evaluations, eye and hearing exams etc.
I recommend a "sit down" conference BEFORE school actually begins. This CAN be scheduled as soon as your child's teacher has been assigned.
This will be the time when the child's teacher will review reports, including their IEP. It is soooo important that the teacher be fully informed about the child's special needs...AND that they understand the needs fully.
I have had to deal with MANY teachers who read up on the IEP...But don't truly understand it. Make sure ALL teachers involve with your child are present, at ANY meeting you have.
2. Meet the Principal! If there are safety concerns, routines and resources you want to know more about..THIS is the person to go to. If they don't know the answer...Make sure they point you in the direction of someone who does. Remember THEY are there for YOUR CHILD!
3. Develop a Communication Strategy! I have of the e-mail addresses of ALL of my kids' teachers...Including the special needs teachers---E-mail has been VITAL in staying in contact. I'd suggest contacting the child's teacher/teachers once a month....Just to stay up-to-date about what's going on at school - AND this also lets the teachers know, that you are a pro-active parent!
(this helps EVERYONE involved)
4. HELP THE TEACHER UNDERSTAND! This is SOOOO important! In regards to Neurofibromatosis....it is a HIGHLY complicated and extremely variable condition. If you want your child to get the most out of school...The teachers dealing with your child need to know what's happening with them.
Heck...I learn new stuff about NF all the time...So it is extremely important to talk to your child's teacher on a consistent basis about the ins and outs of Neurofibromatosis.
If you are not comfortable talking about NF, or just honestly don't know what to say....CLICK HERE to print out a GREAT brochure that talks all about NF and the complications. I suggest you print out a FEW and give them to all of your child's teachers.
Providing the teacher with resources is a great way of getting them to understand!
Every child with special needs is different...Help your child's teacher get to know your them, by fully disclosing ANY information you feel is important (IT'S ALL IMPORTANT By The WAY)
Don't just say that NF is a "tumor disorder"....Becasue it's NOT JUST a tumor disorder!
5. BE INVOLVED!!! Volunteer at the school and be as present as possible! Offer to help in the classroom -- Join the PTA. Schools LOVE volunteers....And this will also show that you are willing to make an investment in how your child learns.
I know not everyone has the time to volunteer -- but even one day a week makes a HUGE difference!
6. BE PREPARED FOR THE IEP MEETINGS! A successful IEP meeting means several things....First understand it takes A LOT of time and consideration to set up an IEP meeting. Being respectful of that time means you not only understand, but you respect that time.
Also, just like when you go to the DR....Being prepared with questions and concerns by writing them down helps to not only move the meeting along smoothly....It may also give the teachers an opportunity to ask questions as well. :) And that's ALWAYS a good thing!
7. STAY IN TOUCH! Always notify the school of any outside evaluations, medical information or support services that may help the school in continuing to provide your child's needs.
A parent's ACTIVE involvement in the education of their child (special needs or not) is INVALUABLE! By sharing your knowledge, your resources and your time....You can help ensure that your child is in the best possible learning environment.
Parents and teachers working together -- Imagine that!
Questions? Leave a Comment!