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My Suggestions
By Shanon McQuown
Shanon co-moderates the School Issues: K-12 section of The Pediatric Network Forum. She is the founder of
The
YPWC Parent/Teacher Bridge Builder, where this article was
originally
published. Many thanks to her for sharing it with us!
Education
- Document. Document! DOCUMENT!! Keep record of all meetings, phone conversations, written correspondence, messages and face-to-face interactions.
- Educate yourself as much as you can about your child's disease and the symptoms that are specific to your child.
- Provide the staff with the opportunity to become informed about the disease. (pamphlets, brochures, web links, books, videos, etc)
- Keep communication open between you and the people who are responsible for your child's education.
- Know that your input is as important as anybody else's on the Child Study, Eligibility or IEP committee.
- When possible and appropriate, allow your child to take part in the meetings.
- Have notes ready before each meeting so you can stay focused on the issues that need to be addressed for your child.
- Have someone go with you to meetings who knows your child well.
- Learn all you can about your and your child's rights in the education process. (See the State Department of Education section)
- Stay aware about the implementation of your child's IEP. Once you've got it on paper, you need to make sure it's in effect. Your child's future will be impacted one way or the other.
- If you have questions, call to speak with the teacher, case manager or administrator before things get out of hand.
I don't wear rose colored glasses and my name is not Polyanna. I just wanted to give you a place to start. If these things get you nowhere, the IDEA provides a process for complaint.
Medical
- Keep your own copies of all of your child's records.
- Share information on research findings, medical journals and articles pertinent to your child's disease with the doctor.
- Remember nobody knows everything. . . this includes doctors.
- Don't be afraid to look elsewhere.
- Remember that no matter what, you and your child are entitled to be treated with respect and compassion.
- Don't be afraid to ask for a second opinion.
- Remember that even though you may not have your PhD or MD, you do have your M.O.M or D.A.D.
- Know the effects and the side effects of each medication. (many of our children are hyper sensitive to certain medications)
Personal
- Listen to how your child feels. Ask and then really listen.
- Encourage your child to continue to look at his/her goals. Then, together, brainstorm about ways to achieve the goals by going around the disability.
- Encourage some level of social interaction.
- Reassure the child that your frustration is not his/her fault.
- Find a source of support and encouragement for yourself.
- Let the child know that you accept him/her as he/she is now. (don't put so much emphasis on finding a cause or cure that you neglect the blessing that is in front of you)
- Never give up hope.
- Have a plan. (example: This is how we're going to do this if you're not well by then) By doing this, they know there is a chance they may improve. They also know the disease won't completely stop them
if they don't)
Extra
- Share your experience with others.
- Share your information with others.
- Don't be afraid to ask for help from others who have been or are still where you are.
- Set aside time to do what gives you pleasure.
- Find humor in some of the symptoms. (sometimes, all we can do is laugh)
- Don't forget the rest of the family.
- See what community services may be available.
- Always have a "plan B"
- Remember that God knows how strong you are even if you doubt it at times. He may have plans for you to become an advocate, volunteer, counselor or homebound teacher for these children.
Note: YPWC stands for Young Person with CFS). You can visit Shanon McQuown's website, the
YPWC
Parent/Teacher Bridge Builder for more education suggestions.
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