What is exactly is "Age-Appropriate" ?

After ten plus years of living, breathing and reading autism, I have many areas of disagreement with accepted teachings and practices.  Most due to the current one-size-fits all education practices.  But one of my pet peeves is the "age-appropriate" goal.  In this day and age where couples honeymoon at Disney, both Grandparents and toddlers wear Ramones Tshirts, Starbucks serves cakepops, and most of us use text abbrevations, that term is up for debate.  

Why is my son's love of Bob the Builder wrong when masses are dressing up for ComCon? He is twelve, loves Chuck Berry, Bob Dylan, Sponge Bob, Flight of the Concords and Jack Black too.  I can't tell you how many times Bob the Builder has helped me with daily life lessons.  Look at Bob and his team: they work together; they all have different abilities and talents; they respect each other's differences!  Or, yes, you do need to learn math!  How could Bob be a builder if he didn't learn mathematics?!   Childishness is to be eradicated. But the state of being child-like? Experiencing joy, wonderment, freedom, delight, understanding? Or like Webster's says: innocence, trust and ingeneousness.  Well, bring that on, I strive everyday to be child-like.  

James' PDA Rules

There is on cool thing that I love about my son's autism. Seriously! I enjoyed what I will call "extended little kid-ness." No not the non-verbal part.  Not the lack of comprehension or ability part.  That beyond sucks.  It was the unabashed little kid love and appreciation thing. Hugs, kisses and holding hands! I had it until recently when I was told that I wasn't allowed to kiss him in public.  Eleven years was a good run!  On the street, I now put my arm around him.  Let's see how long that lasts.  

Homeschool Paean

Yes, I do, love it that much (although I admit that the idea was a bit daunting). In theory, we liked the idea and talked about it as a future, much researched and planned project.  Instead we jumped into homeschooling because we had to: James had to be removed from an inadequite and unsafe environment.  His fears prohibited us from simply placing him in a new school. The reality was exhausting.  At first it was excruciatingly painful. One day it took 5 hours to get through A SINGLE lesson.  I thought James would never stop whining and complaining.  I even wore his noise cancelling headphones (those things don't work). But then it just happened.  I have no idea when because it wasn't sudden.  But James finally understood numbers, he understood values. He fell in love with history.  Science awed him. It helped him to understand a world too overwhelming for him to experience firsthand (yes, those are his words). He discovered art.  He liked his paintings and knew he was talented. He was proud! Little by little, our bond, our trust crept into other parts of life. James began to communicating with others besides me. "Talking" with his iPad and communication app, Proloquo2Go.  And he was "talking" in sentences, about his feelings, his hopes, his dreams and about his autism.  We started going everywhere together, even to a crowded supermarket of panicked shoppers before a snowstorm. It hit me how far we have come when I realized I wasn't dreading extended alone time with my son.  It sounds foriegn to me now, but previously, I had been apprehensive when my husband had to work late or on the weekend.  Homeschooling has turned everything into a shared bond.  I know what he likes, how to tease him, I know how to grab his interest, how and when to push him, what his triggers are and how to cope with them, and, perhaps more importantly, James does too! Homeschooling gave my kid a feeling of security and of confidence.  We treated him like a kid and he began acting like one. Yes he is autistic but he isn't being defined by it anymore. This is what he says:

Eyes Can Hear

James' First Selfie!

Whenever I read about "severe" Autism in the media, the phrase "non-verbal" is usually listed along with violent episodes, physical stimming, and lack of toilet training. Really? I know, the "journalist" is saving space, just glossing over the other types of autism to get to the meat of the artcle, the high-functioning. You know, the kids that can be tested and show concrete, measurable growth. And, unfortunately, results get funding in this education-as-business model world we live in. I guess I'm jaded. After removing James from traditional "school," I have grown accustomed to my son being treated with respect and dignity at his sensory gym and in the neighborhood. Technology will remove that tag, enabling many non-verbal autistic individuals to communicate and show their before-unacknowledged intelligence. Undoubtedly, in some cases, voilence will disappear too as frustrations are eased.  Can you imagine trying to communicate and everyone assuming you are an idiot and acting out because of your unfathomable lack of brain?  James bristles when I say he is autistic. "Just say I can't talk, Mommy." Even he sees the connection.  He then added that I also communicate, to him, with my eyes.  Even before the iPad. "You heard me with your eyes instead of just seeing autism." And then he asked why I was crying.

Some Musings on Thanksgiving by James

Why does my heart sing when we work? Why does my hope soar? Why are we so lucky to be together? Why are we blessed? Why do we have to be thankful just on Thanksgiving? Why is that the only time? Why am I always thankful? Why is Thanksgiving not everyday? Why can't we be more aware of others? Why can't we be kind and nice to everyone even if they are not kind and nice to us? Why is it so hard? Why am i in love today with life? Why am I so happy? Why am I not in so much pain? Why am I okay today? Why is it so weird to be happy? Why does communication make me so happy? Why is the world so hard to navigate? Why am I so blessed? Why does my life have to be so hard? Why does my life have to be so hard? Why do we have it so hard and so great at the same time? Why are my days both? Why are we so blessed? Why is my mommy so mommy? Why is she my hero? Why is she my biggest fan? Why is she my mommy and not someone else's? We are just lucky I guess. We are blessed. We three are quite a team. We work as one family unit. Hope is a family truth and hope is a family way of life. 

Get Happy!

So far, the goal of staying dry through the night has been out of reach. Getting too big for kid over-nights and still being too small for adult ones doesn't help. And don't get me started on clothes where a boys extra large ranges from 14 to 20, depending on the brand! After zero progress, I scaled back on pushing (and undoubtedly stressing) James, hoping he would again take the initiative, like he did in the toilet training challenge.  I still made a big deal about getting up each day and going to the bathroom.  We all did it as a family rule.  Of course, no progress.  Then one day, I heard a noise. Huh? James always gets up and runs straight to us and climbs into our bed. Lo and behold, the noise was James using the toilet!  Woo-hoo! Big deal! Major praise! Of course, I steeled myself: it was a fluke. Don't set up expectations. A lull ensued. We were back to verbal prompting and no obvious awareness. Yesterday, James had an actual accident, wetting the bed.  I took it in stride.  Later, after a slightly rough morning in two therapy sessions and a cranky time at school, James admitted it all in his book:

"Why is my Mommy so nice? Why is she Mommy-nice to me even when I am mean? Why is she so good? Why am I not good like her? Mommy Loves me more than I deserve. Why am I so bad? Mommy thinks I am good too, but I can be bad too. Mommy wants me to make good choices but I don't always. I was mean to my Mommy and my Daddy.  I peed in the bed on purpose this morning because I didn't want to move.  I am sorry Mommy. My Mommy loves me anyway."

This morning? Right into the bathroom to use the toilet!  This. will. happen. Once again, it will be on his schedule.  I am so proud of this hard-working kid!