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This year, my boys are getting the gift of Self-Advocacy.

My children, ages 11, 12, and 14,  are growing faster than I can catch up.  More often than not, teachable moments are after-the-fact.  I’m not always right by their sides anymore.  Anju Usman, a doctor who treats children with autism, once told a packed house of parents to make sure, however they helped their child, to do it out of love, not fear.  That’s why my kids are getting tools to advocate for themselves.

Self-advocacy can be tricky.  Autism is a communication disorder for those who have it and those who don’t.  My three boys will be in situations where they might need to give partial or full self-disclosure about their condition.  They will have to know how to be aware of what they need in different environments.  My kids must learn how to communicate those needs effectively and appropriately.

While I’ve been focusing on the healing of issues in their bodies, I had a chance to hear Valerie Paradiz speak at the Autism Society of North Carolina’s Annual Conference.  She’s a mom of a young man with autism and author of Elijah’s Cup.  At the age of 40, Ms. Paradiz also found out that she has Asperger Syndrome.

I listened to this smart, funny woman give her soft-spoken, yet riveting presentation.  I was struck by how comfortable and well-composed she was with talking in front of hundreds of people.  She wove fascinating stories about her family while introducing The Integrated Self-Advocacy ISA Curriculum.  I was hooked.

Published this year, I bought it.  The Curriculum comes in two books.  There’s a Teacher Edition with a forward by Stephen Shore.  A CD of great templates for structured, guided worksheets, and additional helpful tips from Mr. Shore is included.  The Student Workbook is available separately.  User-friendly icons throughout both books help give ideas for modifications or give visual prompts for taking further action on material just learned.  Completion of the program culminates in a Self-Advocacy Portfolio for the individual to keep.

Although specifically designed for middle-school students on up to adults who have high-functioning autism, Asperger Syndrome, and other related conditions, many units are adaptable for younger students or persons with limited or no verbal communication skills.  In fact, Ms. Paradiz developed her pilot program with students in a self-contained special education classroom; many are nonverbal and cognitively challenged.  The students were taught to do what she calls “Scans” for sensory and social details in any environment.

This book supplies a firm foundation for understanding the meaning of self-advocacy and disclosure.  As a bonus, Paradiz addresses sensory needs, teaches social skills, and encourages the learner to explore his or her “deep and focused interests”.  Valerie Paradiz beckons and guides new self-advocates to keep moving forward by nurturing their own interests, assessing possible career options based on those interests, and researching educational requirements for careers.  She empowers people to make their own plans for their own lives.

I had the pleasure of an email interview with Valerie Paradiz while she was in Paris on her way to London:

In hindsight with regards to raising your son and finding out you were also on the autism spectrum, what did you do right?  What do you wish you would have done differently?

The hindsight I gained after my diagnosis is that every individual on the spectrum deals with the diagnosis and the areas of self acceptance and self advocacy as individuals.  As much as I felt I was tuned into the basic principles of self determination as Elijah’s mom, once the diagnosis applied to me and my life, my relationships, my contribution as a worker in our culture, I saw how unique my own path had been and how it was really up to me to chart that path forward.  Looking back on parenting Elijah, I’m not sure that I’d want to change anything.  I suppose the only thing I wish could be different would be to have more time and more financial means to support him.  In that, I guess I share the same experience with many parents:  we’re not perfect and yet the wish to do more and better for our children never goes away.  In that way, we’re always learning.

What specific experiences prompted you to create The Integrated Self-Advocacy ISA Curriculum?

Various experiences prompted me to write the ISA curriculum.  Most recently, being denied employment for a position I was well qualified for because I self disclosed during the interview process was the impetus for writing the unit on the Americans with Disabilities Act.  It was illegal for the agency to act in this way and it wasn’t required of me to disclose the diagnosis at the interview.  Knowing these basic skills and information might help other aspies circumvent such unfortunate things.  Secondly, my friends and mentors on the spectrum inspired me, many of them pioneers in the disability self-advocacy community.  Finally, I feel that we all talk about self-advocacy, person-centered planning, and self-determination as good things, but we have yet to translate these ideals into practice.  I wanted to give this curriculum to teachers, parents, therapists, and others who want to support someone on the spectrum in this way but don’t know where to begin.

How do you stay calm and alert in public-speaking situations?

In order to stay calm and alert in public speaking situations, I must do a great deal of physical exercise, eat an organic and low toxin diet (as much as this is possible), take key supplements for GI issues and insomnia, and have limited social interaction until I’m on the job.

Valerie’s last answer sounds similar to what we’re doing with our kids!  I think you can tell The Integrated Self-Advocacy ISA Curriculum has my thumbs up.  It is the most thorough, comprehensive, integrative plan I could wish for to help my children prepare for their transition to adulthood.  And, as I’m a pretty frugal mom, ISA provides the most bang for your buck.  I encourage you to buy it from the Autism Society of North Carolina Bookstore.  A portion of the sale goes directly to helping individuals and families affected by autism in North Carolina.  Thank you, Valerie.  And thank YOU, Readers.

Tags: Alison Davis, autism, Autism Society of North Carolina, Autism Society of North Carolina Bookstore, Dr. Anju Usman, Integrated Self-Advocacy ISA Curriculum, momof3au, person-centered planning, self advocacy, self-determination, Stehen Shore, Valerie Paradiz Go back