Friday, 31 December 2010

• The spectrum of autism parenting

   

  

  We  all go through those times where we either a) defer decision-making to the experts or b) come to an IEP meeting with both barrels loaded, ready to fight to the death for our kids. What we often forget is that raising a child – any child- requires the help of the community, the parents and the child himself. What we cannot forget is that the parents are the glue that holds all the pieces together. As parents, we try to do our best, but there is a difference between being well-intentioned and being effective advocates. An effective parent advocate is one who is:

  - Well-informed. That means that she keeps track of the latest news and developments related to autism spectrum disorders. She knows her rights and the rights of her children, and she knows the process for securing those rights if they have been disregarded.

  - Well-connected.  That means that he or she has volunteered in a classroom or at a school fundraiser. She knows the culture and flow of the school and its parent community. She knows her child’s teachers, therapists, guidance counselor and (very importantly) the school principal. She has also met with school district administrators and school board members. She not only knows what resources are currently available, she also understands what resources could be available, and what it would take to secure them. She has  met her city council members, state and federal legislators and/or their staffs.

   

  - Well-in tune. An effective parent advocate has a pretty good idea of what her child’s issues are, and what he needs to succeed in his school and community environments. If she doesn’t, she will ask for help to get to that point. And, rather than rely entirely on instinct, she will use data, preferably collected from multiple sources. That data will be generated via observation, testing, private therapists/evaluators, and medical opinions from developmental pediatricians, neurologists, etc. An effective parent (and care team) will review the data in its entirety rather than relying solely on anecdotal information or a single IQ test.

  - Well-spoken.  A well-informed parent is able to generate credibility.  She writes grammatically correct sentences, is convincing and persuasive  in her speech and her facts are unassailable. Ahem…here is where I need to caveat the do-as-I-say-not-as-I-do.. She remains calm and professional under all circumstances.

  So on we go, never perfect, but always up, up and up the spectrum of autism parenting.

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