Tag Archives: autistic

The Meticulous Choreography of Improvisation

13 Jul

I found this on thautcast.com: “What I Can Do Is Pretend To Be You”. It’s an Aspergian’s reflections on a life focused on passing, focused on perfecting “the character” others want us to portray. My first three-plus decades felt like this. I remember having to do an improv scene in the mandatory high school theater class and I just couldn’t grasp how to make improv work. Now I know that nearly every moment of my life was strictly scripted, with rationed moments of improvisation to perpetuate the illusion of flexibility and the words and looks that suggested that I was just a freak and not fitting in on purpose, and not possibly because of anything organic, formed in me before words and judgments and comparisons.

I struggled with that for years, as I tend to fixate on the things I can’t do, or can’t do well (training from my youth, when things were forever paraded about with labels regarding shortcomings, comparisons to other people, and my intelligence).

I fixate, I hyper focus, for the sake of pursuing mastery and approval.

I should say, I fixated. I hyper focused.

I’m so much happier now, being myself.

The approval I seek is my own, and I’ve learned to be flexible in my criteria and the word and concept of perfection aren’t in my vocabulary except as a scar that serves as a reminder to buckle up or watch where you are going as next time a scar might not even have the opportunity to form over the wound.

I wish I had this piece, from Larkin Taylor-Parker, on a sandwich board to wear around people who refused to look at me and instead focused on what they felt I wasn’t willing to be, for those who saw just the failure and the gaffes and not the effort and considerable choreography applied to each moment, to pass even just a little…

Click the link to hop on over to thautcast. I’d like to hear your thoughts on this piece and the concept of “passing”.

On Autistic Passing: “What I Can Do Is Pretend to Be You” | thAutcast.com.

Happy Friday,

B

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Ten Tips… An Autistic’s Advice

5 Dec
Tomato Tomato.  It's only different if you say it aloud.

Tomato Tomato. Lets Call The Whole Thing Off....Doesn't work so well when typed.

A fantastic list of 10 tips for teachers, that really should read:  Ten Tips for Everyone.    Every person that interacts with the world, in any way, shape, or form will come in contact with a person with autism at some point and probably more frequently than just once or twice.  For that matter, every person does come in contact with people with various disabilities, some of them “invisible disabilities”… So yes, everyone should read this and mentally slather it onto their brains as “Ten Tips to Mindfully Communicate With Your Fellow Humans, Especially the Ones Who Seem To Be A Little (or a lot) Off Center In What You Consider To Be ‘Normal'”. 

My apologies for using that “N” word.  Most of you know that I find that N word to be outdated, on an even keel day, and mythical on the other 364.

Clickety click the link below, and check out the tips.

Please comment below if there is anything you would add and if you have examples of people doing the opposite… Me thinks it helps to bridge the gap between us and them when we can share examples.  Too many of the folks not living with disability or a difference that impacts every single morsel of their lives, think that discrimination and just plain douchey behavior doesn’t happen anymore because “people know better” and “there are laws” and when we do share our stories with others we are often told that we just misunderstood or worse, that clearly we have a chip on our shoulder.  Gee. Thanks made-for-cable-TV movies and sitcoms. Stereotyping us as bitter-because-of-our-physical challenges or extra-sweet and gullible because of mental and emotional ones, either keeps folks away or lets them feel no guilt whatsoever when they slip on in and take advantage of us.

Those of us who live with “it” everyday know that the treatment of people with differences and disabilities is like Betty Crocker’s iconic female face.  The clothes have changed.  Makeup and hair have been updated.  But it’s still a box of cake mix.  Capisce?

Here, as promised way back in the beginnings of this post, is the link:

An Autistic’s Advice: Ten Tips for Teachers.

xo

B

Alex’s Journey to Camp Cheerful UPDATE July 9

11 Jun
Alex’s Journey to Camp Cheerful UPDATE…
I want to thank all of the wonderfully generous friends who supported us in our fundraising to send Alex to this special camp.  Unfortunately, life had other plans for the time being.  Due to fairly dramatic health issues (more on that later), I am unable to accompany Alex to Ohio, so we are postponing his experience at Camp Cheerful until next year. I did return all funds raised, to their respective contributors, due to the change in plans.  Alex is disappointed, but he is very vocal about wanting me to get better.  We are working at getting new therapists on board for him, locally and hopefully camp will be in reach next summer and I will be 110% again!  Thanks again to everyone who continually roots for Alex.  Alex is well aware of the love everyone has shown us along our long journey.
xo
B

Alex is my amazingly brilliant, funny, sweet kid who has Asperger Syndrome. Asperger’s is a neurological disorder, it is a developmental disability.

Alex is almost 7 years old. There is a summer camp (Camp Cheerful) in Ohio specially
designed for kids with Asperger’s. It includes things like Occupational
Therapy, which would be a huge help to Alex. The camp would help give
Alex the tools he needs to face his daily challenges, which are more
than most adults could tackle every day.

Here’s a wonderful description of Asperger’s Syndrome that recently aired on the PBS show “Arthur” (the meat of it is only until around 2:45… so if you aren’t into Arthur please don’t feel you need to watch all 7+ minutes!)

For a more straight facts, less dramatized (less animated) description please visit AANE’s AS facts. For our personal experiences please read the Asperger’s entries on my blog

Love and peace,
Bek, Jeff, and Alex

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Autism & Testing 1-2-3…

21 Oct

Originally uploaded by CleverIndie

This is from our local Autism Speaks’ Facebook page:
***Please note that the Care Mobile will also be at the Autism Speaks SWFL Walk Now for Autism on November 7 at Estero Community Park*****

The Children’s Hospital of Southwest Florida, in partnership with the Ronald McDonald House Charities of Southwest Florida, will offer free monthly autism spectrum disorder screening for toddlers 18 months to 36 months of age.

The first screening will be held Nov. 6 from 9:30 a.m. to 2 p.m. in the Ronald McDonald Care Mobile, located in the Cape Coral Hospital parking lot. Additional screenings will be conducted monthly at different locations across Lee County.

It is estimated that one in every 150 children is diagnosed with some form of ASD, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.

That’s why parents are encouraged to bring their toddlers to the Ronald McDonald Care Mobile for a free screening. Clinicians will use the M-CHAT, with Denver Developmental Screening Tool to assess the toddlers. The screening is not intended to make a definitive ASD diagnosis, but rather to determine whether your child may be at risk and needs further evaluation.

Medical consultants for the project stress that an early diagnosis can make a vast difference for toddlers and their families. They say early intensive behavioral intervention, or EIBI, can make an immense difference not just in the development of the child, but in their families as well.

The ASD screening is conducted by the Neurosciences Center at TCH, under the guidance of pediatric neurologist Jose Colon, MD, MPH, and pediatric psychiatrist Marianne Krouk, DO. The onsite screenings will be administered by an Advanced Registered Nurse Practitioner, who has extensive training and experience in typical child development and developmental disorders.

A physician referral is not required. To schedule a screening, please call 239-985-3608.”

If you have any concerns, I’d make an appointment. For those who think that a pediatrician would have mentioned something during the annual checkup, I wouldn’t put all of my trust in that, though it is getting better. Remember, getting clarification and help for you and your child, is the best thing for your kid and their future, and the earlier, the better.

Just wanted to share….Hope this helps someone…
xo
Bek

Alex, The Time Machine, & Heromachine.com

16 Mar

A while back I found out that the baldguy was playing around on heromachine.com and had won one of the caption contests. The most wonderful prize was a custom drawing by the very talented Jeff Hebert. Baldguy (my baldguy) knew exactly what he wanted for the drawing- a picture of Alex in his Time Machine!

Of course, having a very rule based kid (see my previous post, Alex & The Time Machine) with little to no flexibility on pretty much anything, we knew the details would have to be perfect, and Jeff Hebert came through with a most perfect interpretation. So perfect, that kiddo saw it and said right away “that’s Alex! that’s me! it’s me! in my time machine!” and concurred that the screen and the button were exactly right (and we have only ever heard them described, verbally, by Alex) which, if you know Alex, means that this drawing is spot on, because any variation from his memory or his definition of something- verbal or visual- can send him into a tailspin. Thank you Mr. Hebert and heromachine.com for making a little kid with a pile of challenges feel like a true super hero.

Huge hug from a grateful mama!

Now, without any further delay, Alex & his Time Machine:

Alex & The Time Machine by Jeff Hebert/Heromachine.com

Alex & The Time Machine by Jeff Hebert/Heromachine.com

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