Happy Halloween!

October 31, 2012

Sharing a Facebook post from Warriors For Autism Incorporated TM http://www.warriorsforautism.com/

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We are often asked by our clients, “How bad is it (our loved one’s disability) ?”   The answer is It doesnt matter what we see clinically.  If you live with disabilities, the person under your roof is the most important, profound and clinically significant case in the world. 

Your journey is a marathon, not a sprint.  Someday, the marathon may evolve into a relay.  We wanted to share an article from The New York Times  (October 5, 2012) on a timeless subject for families living with disabilities. 

“Assuring the Care of a Family Member With Special Needs” by Ron Lieber

http://www.nytimes.com/2012/10/06/your-money/assuring-the-care-of-a-family-member-with-special-needs.html?smid=li-share&_r=0

September 25, 2012

This interview by Ariane Zurcher, Emma’s Hope Book, tells an amazing story of courage, hope and a family’s loving determination. We were inspired by Chou Chou’s story and we share this with the hope it will offer you encouragement on your journey. Thank you Chou Chou and Ariane!

Emma's Hope Book

I met Chou Chou last spring when she left a comment on this blog.  She wrote, “I love your writing, and find your darling Emma startlingly like me as a child.  I am a happy, successful, 58 year old autistic woman.  I just wanted to say you and your husband are wonderful parents, and Emma will be fine. She will be wonderful. She is wonderful.” 

 I read her comment a dozen times. I felt indescribable joy and I wept.  I was just beginning to read the writings of Autistic adults and had started, very tentatively, to reach out to a few of them.  Then out of nowhere there was Chou Chou reaching out to me!  I was so excited!  I doubt she could know how much her kind words of encouragement meant to me.  We’ve been in touch ever since.

Chou Chou performing with Doc Scantlin and His Imperial Orchestra

 Tell…

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The “Royal We”

July 19, 2012

Paper DollsAs we anticipate the 2012 Summer Olympics, we cannot help but wonder about the athletes’ parents.  How much cajoling, encouraging and driving to practices had they done over the years?  While they likely provided for and supported their children, they couldn’t practice for them, teach them the finer points of the sport, compete for them or take the hurt ankles or sore muscles in their places.  At some point, they probably had to let go and let their children try and try and try and try and try until they mastered the skills under the tutelage of coaches-all by themselves.  If you are a parent of a special needs child, you have spent years monitoring, mentoring, encouraging, cajoling and redirecting your child’s behavior. Somewhere along the way, your personhood was set aside to focus every moment of your day on your child to the point that the two of you morphed into one person.  That is how the “Royal We” became a member of your family.  “We didn’t take our medicine.”  “We don’t feel well today.”  “We had a nightmare.” “We didn’t understand our math homework.” “We didn’t make our bed.”  “We had a meltdown in the cereal aisle because we wanted Mega Sugar Flakes and we said ‘no’.”  Think about it…do you use the Royal We when you speak about your spouse, your sibling your best friend, your employee or your colleague?  (“We had a bad review.” “We grew a beard.” “We had a migraine.”)  When was the last time you completed the work necessary for your spouse to complete a deadline? You probably don’t because you probably don’t take responsibility for their behavior or their work like you do for your child’s.

Many seasoned professionals at state education agencies have spent years developing and refining curriculum and reasonable expectations that are consistent with your child’s development.  Teachers are trained to only give homework on developmentally appropriate concepts that have already been taught to your child.  Your child’s school success is ultimately his choice and responsibility. You can provide all the ingredients for a great year but, you cannot make it happen for him.  Homework should not take over your family life in the evenings. It is not meant to be a collaborative effort between your child and the rest of the family.  You can provide an appropriate place to study with ample light and supplies for your child. You can be a reader or a scribe for your child.  You cannot be a teacher and re-teach the information nor can you be your child’s surrogate.  In other words, learning fourth grade Math, seventh grade Texas History or eleventh grade Chemistry is your child’s responsibility and problem to solve. If your child doesn’t complete homework (for whatever reason) support and offer suggestions –resist the urge to solve the problem:  “I will be happy to drive you to school early to finish this with the teacher.”  If the teacher and you truly believe that there is more than a lack of motivation and responsibility involved in your child’s learning, then explore that further.

You are a facilitator and a supporter for your child’s academic success.  Completing assignments is about personal effort-not communal effort.  Learning is an individual and voluntary act.  You choose to remember and assimilate information.  (Remember the class you had to take in high school? Do you remember anything you “learned”?) Words usually follow thought and precede action.  They give power to situations and events in our lives.   When you use the Royal We when referring to your child, you are taking away a learning opportunity for your child and you send a silent message:  “I’ll take responsibility for you so you won’t have to”.  Watching your child struggle is difficult and heart-wrenching but, it is important to let your child do so in developmentally appropriate ways. In the end, it is their success and their responsibility.  They have not only achieved learning a new skill, they have reached another dimension in their journey.

“One in three adults with autism lack professional experience, worrying experts…” (CBS News Staff, 2012)
http://www.cbsnews.com/8301-504763_162-57433744-10391704/one-in-three-adults-with-autism-lack-professional-experience-worrying-experts/

This article includes an observation by a policy specialist about the need for increased job training for people on the Autism Spectrum. This comment concerns us because it seems to assume that offering more of the same training is the solution. Do they also think that repeating what you say in a louder voice is a sure way for a non-English speaker to understand you?  Training does not assure skills are acquired, applied, transferred and adapted beyond the original training setting.

The general assumption of the word” learning” is that someone has gained knowledge, skills and behaviors. Learning is what happens when information is received, absorbed and integrated for future use. Learning is an internal process requiring physical/mental health, social/emotional support and developed communication abilities. It is also a personal choice heavily influenced by many factors (for instance tired, hungry, cold, homeless, neurologically different, alone).

The general assumption of the word teaching (training) is the delivery of knowledge and skills. Teaching is what happens when facts are organized, tailored and presented. Teaching is an external process independent from the learner.

Let’s start by improving training for the decision makers about the services needed and funding necessary for tomorrow’s workforce. Let’s educate curriculum developers to know how much time and attention is required to learn particularly when you are confronted by mother nature with different neurology instead of only focusing on the time necessary to teach and test. Effective job training requires knowledge and skills to build successful relationships not just technical skills. It starts from the moment a person enters into the world and grows with every interaction. Take for example, a typically developing two year old that will intuitively modify their speech when talking to a person with a hearing loss. Children with neurological differences often are shuttled to specialists and live in relatively protected environments because people don’t always understand them, judge them and critique their parents giving them little time to experience the world like their neurotypical peers. Society needs training on how to include children with neurological differences and support these brave families.

Job training in a school setting starts at PPCD (Pre-School Programs for Children with Disabilities) not in high school. Job training is not another class to take or something in lieu of college. Consider how much more effective training programs could be if the scope of the needs of people with neurological differences were truly understood. Consider building emotional regulation, personal accountability, awareness of self and others into daily living skills curriculum. Consider building conversation and purposeful, mindful communication into daily living skills curriculum. Consider what could be accomplished if we lifted the veil of paperwork and allowed students to self-actualize guided by teachers with time to connect with each of them.

There are several of you out there who will say that it is being done. Our question is if it is being done why do so many students with neurological differences receive training that does not allow them sustainable employment?

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