New boots and a favorite skirt. My fashionista!

Clear, accurate and concise.  I have been trying to write a summary of Julia, strengths and weaknesses, gifts and challenges.  I am both up to the task and completely overwhelmed.  And no where near objective.  But can I be informative?

I’ve begun my search for educational alternatives for Julia for next year in earnest.  Two weeks ago, I began contacting educators, researchers and anyone who I thought might have ideas or know people with ideas about educating kids on the autism spectrum, specifically about educating Julia.  The big question is . . . better to just copy the email here:

Julia and I are moving into Fall with some chaos in our lives in the form of big changes in her weekly therapy.  The up side of the changes is that it has caused me to begin thinking of how to best educate my girl.

Julia is in Eighth Grade this school year and I expect she will move on to West High School for Ninth grade.  Considering how profound this transition will be, I am considering a radical experiment.  Julia has become a very good traveller—last year we traveled in Italy for three weeks, this year we were away from home for six.  I would like to travel with her for a year and offer her some kind of different educational experience.  Julia does best with hands on learning and that becomes harder and harder to come by in the typical secondary school setting.  She continues to be an avid reader and a math learner.  I am looking for alternatives.

I am writing to everyone that I can think of who might have ideas or insights.  I am looking for ongoing conversations but would be happy for any response that you might offer.  I am looking for connections and hints to chase down, and research to read.

And so, my initial questions are:

1. Are there any evidence based recommendations for educating a person on the spectrum who is more concrete than the typical student and/or who needs a more hands on educational experience?

2. Are there any places/schools/programs experimenting with evidence based alternatives to the typical offerings at a public high school?

3. Is there anywhere in the world that is making great strides in education for secondary school students with autism or other cognitive disabilities?

4. Julia’s interest in art continues to grow.  Are there any programs—specialized art high schools, apprenticeship craft programs, etc.—that invite kids with autism or other cognitive disabilities to participate?

5. One of my ideas is to live somewhere in Europe for a year and take someone who could teach Julia where ever we are making use of her interests and museums, castles, and cultural experiences.  Do you know of anyone who has done such a thing, might be willing to consider such an idea, might want to help with the development of such an idea?

I think I am only writing to people who are incredibly busy and so I do not expect lengthy answers, but I would so appreciate any hints, advice, research or connections that you could offer.

Growing Julia has always taken an immense village of friends, teachers and therapists.  Please know that I am very grateful for the help, love and support that we’ve received.  It is, in large part, how we continue to thrive.

More than one person responded asking for a description of Julia’s abilities and challenges.  And so, I endeavored to write such a thing.

Oy.

At various points in Cheshire’s younger life, I was asked to do the same thing.  Those descriptions were also hard to write, hard to be objective and informative, but considering those writings now, I could have written for almost anything she applied for:  Cheshire is a bright, social, engaging child.  She will be easy to teach and a good role model for other children.  She will try to please anyone who teaches her and you will ultimately conclude that she is ‘thoroughly delightful.’

I was never that concise.  Can any parent with an ounce of humility be that concise and direct with their recommendations/descriptions?

Writing about Julia, I want to be clear, accurate and concise.  At least on the last, I have fallen short so far.  But I have a beginning, a draft, something to send to those who have asked.  I question how objective I am.  Is it impossible to truly assess you own child’s abilities?  To take a hard, objective look at their challenges and gifts?  I question how much I normalize Julia.  What do I see?  What am I imagining?  What do I miss?

In addition, over the last few days working on this ‘masterpiece’ I was left with a heaviness of heart that I could not shake.  My fear that Julia will not have a happy life takes over.  I can usually put those fears aside and live in our present, but this task demanded a deep dwelling in deficits.  And my sense of dread and doom slips in and takes over.

But the piece is finished for now and out to Julia’s teacher and Cheshire for comments and edits.  I sent it, with flaws, to those that have asked.  Now, I will put it here.  Perhaps I have a reader with ideas?  Or know someone who might have ideas.  Please pass what I’ve written along or leave a comment.  I am in the business of following leads.

At 15, Julia is friendly and outgoing. She can have elaborate conversations on preferred topics. She genuinely enjoys being around others; however, she does not understand the mechanics of social interaction. She can be compassionate and encouraging with peers who struggle. She can also be so blunt as to be perceived as rude. She has a developing sense of humor. Julia works hard and has good work habits. She is persistent in preferred activities and also when doing difficult academic tasks. She needs support to persevere during difficult academic assignments and enjoys practice, be it in academic skills or artistic pursuits. She is able to take instruction from trusted teachers and is generally cheerful about correction.

Julia has a PDD-NOS diagnosis, atypical autism possibly caused by early prolonged trauma, and has speech and language impairments. Other diagnoses are ADHD and Reactive Attachment Disorder. These differences impair her ability to participate fully in general education curriculum and affect her comprehension of curriculum and her progress across social and academic settings. She has delays in sensory and social skills, preservative thinking and at times, persistent preoccupation with activities. Julia is two grade levels below her age peers and generally understands concepts and content as if she is five years below her chronological age.  In order for Julia to effectively participate in class discussion and activities, extensive pre-reading and review at home are necessary.

Julia has benefited from excellent school settings, strong teachers and focused therapists, and as a result, she loves school. Prior to her tenth birthday, her team focused on managing her emotions and developing appropriate behavior to interact with peers and adults. During her tenth year, she started taking medication aimed at her ADHD. She began recognizing words and writing words instead of strings of letters. In mathematics, she began counting to 100 and understanding the concepts of addition and subtraction. She also recognized that her ability to attend and participate in school hinged on managing her emotions and behavior.

Julia has become a reader. She enjoys reading for both school and pleasure. It is difficult to get an accurate picture of Julia’s reading abilities because she is able to decode at far higher levels than she is able to comprehend. She enjoys high level reading content but needs support and multiple exposure to text to ensure full understanding. She reads orally with expression and responds with comments or facial expressions indicating her understanding. Julia can answer basic questions about the narrative flow of texts.  She can retell narratives with some support but she struggles when asked to make all but very simple inferences.

Julia enjoys writing which is her strongest academic skill. She can be very articulate in her writing and can follow both structured and open-ended writing tasks. Once routines are established, Julia can follow them independently across school environments. She knows how to access the adults who support her throughout the school day. Julia is able to follow written and verbal directions when they are paired.

Often Julia processes information through writing, either by rewriting directions, rules or things she has heard, or by writing letters asking for help or relating something with which she is struggling. Julia can quickly fill a page with ideas in response to questions or prompts, although those ideas do not always flow logically and often she wanders from the immediate topic. Julia is able to write several paragraphs on a topic but structures and support need to be in place throughout the process to keep her focused. Julia is a very good speller and she has very legible handwriting although she can perseverate on the look of the writing or the correct spelling of a word at the expense of content.

Julia started with a very bad number sense and the skills she has gained can be credited to her persistence and that of her teachers. She knows all of her basic facts and can add, subtract and multiply multi-digit numbers. She is able to do simple two-step word problems focusing on word clues; however, it is hard to determine whether she truly understands the underlying mathematical ideas. She was late to understand money, but has become comfortable manipulating it and making change. Measurement has challenged her although her interest in sewing has provided a practical focus for this skill. Fractions are a very abstract concept as is time as it pertains to her life.

Julia is a gifted artist. Although deprived of the simplest tools and materials during her first five years, Julia’s ability to capture and record what she sees and what is in her imagination is far beyond the instruction she has received. She is able to both copy images and change their positions or sizes in her drawings. Julia usually draws animals, people or cartoon characters, and her images always have personality and movement.  Her images are usually accompanied by narrative. When pressed to draw larger scenes, she demonstrates an innate ability to use the compositional elements of perspective, form and focal point. Although drawing is her preferred expression at present, she is equally comfortable using clay and other sculptural materials. She has a distinctive sense of color and design.

Julia also studies cello in school and privately. She has progressed slower than typical students but her tone and technique are excellent. She practices independently in a manner consistent with her teacher’s instructions.