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I am the crazy mom of five boys.  Four of my five boys are on the autism spectrum. Neuro-Diversity rocks!!!  I cook, I clean, I blog, I breathe.  Yup that is about it.  If you want to catch a glimpse of our crazy world you are more than welcome but don't say I didn't warn you.

Tuesday, April 12, 2011

10 Ways to Effectively Advocate for Your Child



Before I begin let me say unequivocally that I support our schools.  We would not be where we are today without the amazing support of some fine teachers and programs.  I have to give a big public Thank You!!! to Ms. Erin R  who forever impacted our lives by teaching us so much about autism and bringing our son Jamie beyond what the doctor’s predicted he would ever go.  Early intervention rocks and you are our hero.  I have made friends with many teachers, administrators, therapist, diagnosticians, and aides over the years.  We have been very blessed indeed.
That being said, our road has not been without its difficulties.  Moving from VA (which had an amazing early intervention and school age program) to small town TX (which was easily 20 years behind the current educational norms in autism education) was beyond shocking.  From the moment we enrolled our boys it has been one major battle after another to get them the education that they need.  We have seen improvements emerge slowly throughout the battle but it is still a difficult road.  As I have reached out to other parents in the SPED community I have found that our battle is unfortunately not unusual.  In fact our battle has become quite common.  Many parents have expressed frustration at not knowing how to fight for their children; others have simply removed their child from the public system all together.  Today I am going to give a few tips that I have learned through my own experiences.  These pointers were not learned easily, in fact more often than not they were learned at the school of hard knocks.
1)     1)   You are your child’s best and only advocate.  You are the one who has seen your child grow and know them better than anyone else.  You know their strengths, weaknesses, and needs from year to year.  You see the whole picture.  Everyone else speaks only from the perspective of one school year at a time.
2)   2)    Educate yourself!!!  This is of the utmost importance.  The Special Education system is overflowing with acronyms, paper work and processes.  You will be better served sitting in a meeting with everyone speaking Martian than attending an IEP meeting if you do not take the time to learn the language of SPED.  There are several ways to do this: you can do research online, join parent support groups, hire an educational mediator or simply take advantage of the resources at your disposal and ask one of the teachers or therapist to outline the process and to explain the acronyms.
3)      3)  Get an outside diagnosis from a trained professional (Developmental Pediatrician, Pediatric Psychologist or Psychiatrist).  This will be invaluable of the schools decide to disagree with you on your child’s IEP (individualized Education Plan).
4)   4)    Keep EVERYTHING!!!  You will feel like you are drowning in paper work but KEEP IT!!!  This is your proof.  Do not EVER give the school your originals (make the copies yourself and hand them to the staff).  Keep copies of all emails and try not to have any conversation that does not have a documented paper or electronic trail.  This is your lifeline.  If it isn’t documented it never happened as far as these proceedings go.
5)      5)  Find support for yourself.  This can be an emotionally exhausting process.  You need to find friends who can walk this path with you, let you rant when you need to rant and let you cry when you need to cry.  There are online support groups.  One that I highly recommend is ASPIRES.  There are many, many community support groups, Just go online and Google your area and Autism Parent Support.  You will be amazed at the results.
6)     6)   Talk to your child and listen to their answers.  I know this sounds very New Agey.  However, you will be amazed at their answers.  Sometimes what you think is the problem is in fact not.  As a parent you know your child enough to know when they are trying to weasel out of responsibility and when they are in fact struggling.
7)     7)   Do not be afraid of the “LABEL”.  For years we have been taught that labeling our kids is detrimental.  Sometimes the only way to get your child the help they need to succeed is to get a diagnosis for them.  You can’t fix a car of you refuse to acknowledge that there is a problem.  Same concept applies here.
8)    8)    Do not be afraid to disagree.  If what the school is proposing does not sound right to you say so!!!  You have the right to an independent outside evaluation (that the school has to pay for) if you cannot reach a compromise.
9)     9)    Learn your rights and the rights of your child.  Read the IDEA (The Individuals with Disabilities Act).  Underline relevant sections and bring it to your IEP meetings.
1010)     Focus on the good.  It is so easy to focus on only the negatives when dealing with disabilities but there is always something good to be found.  If you look for storm clouds your life will feel dreary but if you are actively looking for the bright spots suddenly you are not so overwhelmed.  I know it sounds crazy but training your own mind to think differently is half the battle.
I hope that this will save someone some of the frustrations that I have faced learning it the hard way.  Please feel free to contact me if you have any questions or comments.  Ok it’s time for me to trade my keyboard for a mop.  Clean floors here I come.-Kristine

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