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Our advocacy resources and out right weaponry

This is on the tail of my last post concerning ghost child.  I alluded to our process being years of sharing concern and month of pushing to get results.  By years, over seven years. Of multiple concerns.  Most of those years dealt with advocating with medical professionals, some of those "professionals" the term is used loosely.  The primary issue with ghost child is conductive hearing loss that was apparent from infancy and multiple surgeries.  We now have medical recognition after four surgeries that her continued struggles with out intervention that it isn't normal.  It took everything I had not to respond, "no shit Sherlock."  However, at around age four it became very apparent there was more.  No one "saw it" except us and a few family members. I was flat out told last year that she isn't a behavior problem, alluding that there must not be anything going on because she isn't having behavioral referrals. Great, discrimination based on my child's ability to cope during the school day.  When she walked through that door it was a different child. Seriously self control in that meeting my friends. Serious, "I can't go to jail" self control. I can spend hours on the congressional investigations and laws going back to the 1970's on how wrong it is to label or not label a child based on behavior. This is the point of this post.  After years of working in education and the "baptism by fire" in educating myself on advocacy for my child, I have some potential powerful resources and suggestions to share with you.

Advice. Don't do what I did and take it in all at once.  You will cry, bang your head, fetal position. It is a lot to absorb.  Take bites you can swallow and know your limits.  Find someone who has been there before or knows what you are going through.  The state of Kentucky has mentors for those navigating all the realms of dealing with special needs.  My husband, mom, and a close former colleague/friend where my support group.  Find someone first.

Your first 101 course is to get a copy or kindle edition in my case of Wrights Law All About Test & Assessments and Special Education Law.  I love how Wrights Law makes is thorough but accessible.  Their website is wonderful too with information on further advocacy and great stories about those who have had success. http://www.wrightslaw.com/

102 is get on https://www.understood.org/en and get familiar.  They have amazing resources and articles that make it easier to take it in pieces.  It's not just for learning and attention issues. Their break downs of IEP and 504's is phenomenal. The difference between IEP and 504  They have so much more to help you understand and work with your child's school.  

These two things mostly deal with navigating the school system.  We dealt a lot with the medical field and their expertise can be applied when advocating with doctors.  For your sanity, keep a notebook and folder for everything. Journaling your concerns and specifics are helpful.  If you can take a photo or video an certain concern, do it.  Keep all papers and ask for copies of everything.  I may have write ups of "no" on a specific diagnosis but I have the specific testing to show we needed a different direction.  I made sure I was armed.  Sadly, as much as you can, make sure communications are in writing.  This is my weaponry in sharing my outrage with the State government and the Department of Education.  While my ghost child is getting what she needs, other ghost children are out there with little to no options to address their needs. It's not acceptable. Its not what I want but I prepared just in case.  

 101 and 102 are your two major arsenals in your advocacy. Start with these two.  Hope for a peace treaty but plan for war.  Peace and working together is always better.  However, the fight can become necessary.  Below are a few more links to resources and there are much more out there!  Take a deep breath, exhale and start taking steps with someone.   

I am breathing and walking with you.  

Namaste


Additional Links- there are more!











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