What does childhood mean to your autistic child?

The scene plays out a million times. Parents, the developmental pediatrician, the child who is not hitting social milestones. The tears. I’ve been there.

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The advice. Medications. Therapies, Visits, Appointments. One breeding another like Mickey in the Sorcerer’s Apprentice, ceaseless brooms and buckets. They want to help but they exist in a clinical setting and who plays in an exam room or a designated therapeutic space? By definition play is organic, unbounded and engaging. fred rogers quoteDirected play with a counselor moving towards a play objective is not play. It is an intervention. I don’t care how the room is dressed up with balls, color and swings.

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I had memories stir inside me, I related.  I rejected my fear about the word autism and reached back into my past for tools that I could use to socially advance my child without making him feel less than.

If you require therapeutic language, call it “immersive home based play therapy”, in my words “a 70’s childhood.” Every parent draws from personal experience–and mine was the backyards of my neighbors at kellysneighborhood and staying outside in all weather. My successful experiences relied on the outdoors, a pet, cousins, siblings, sensory engagement.

Sensory wonder like the clattering of a train on a long Amtrak trip to Florida, pressing my face against a cold window. Splashing in water or the smell of a barn. I didn’t have a barn. I only rode a train twice. I had significant social delays, these delays existed as an acknowledgment by the adults in my life but they didn’t talk about it to me and they didn’t treat it directly with a doctor. My parents despaired of it and lived with it.  mom and i - CopyThe only thing they could do in the 70’s was hope I grew out of it. This was not an amazing attitude and “growing out of it” took place to a degree but what really helped me was seeing my own child and giving words to what challenged him and what strengthened him. Because he was the same as I was. We were both on the spectrum. I made more social strides parenting him than I ever did before I knew what neurodiversity was.

Every trait has a flip side to it. If a child has a strong negative behavior, flip it around and look for the strength. My social weakness enabled a hunger for sensory play. I

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after the monsoon

soaked up smells and sounds. The pleasure that sensory play gave me was the foundation for my ease and slow progress. Richard Louv writes about “fascination” a suspended moment of sense engagement. If you ever laid in the damp grass on a sunny day and looked at the world from grass level, felt it tickling you, that’s fascirainnation. Watch ants wending along a sidewalk towards a crumb or rolled over, shielding your eyes and following the flight of a bird, that is fascination. It has no real point and involves losing track of time and just being.

Fascination is fabulous. Kids are naturals at giving into fascination.  Most adult put a stop to it, insisting on staying out of the dirt, getting up, get going, stop it. circle spinning thing - CopyThese same adults will wrap back around and try to find that gift again. Maybe they forest bathe. Maybe they will Instagram a flower or a view. It is work to shut your adult brain off and just be. It’s even more work if you weren’t allowed a chance to do it in the first place. Kids can do it, but the social world demands that you direct your energy towards a goal. And that’s my problem with directed interventions and play therapy. It’s so dry. It kind of sucks.sprinklers

The kids that hang onto fascination the longest are the country kids. The farm kids. Think of an adult that grew up playing outside. Did that person ever say “I wish I had spent more times indoors doing activities. My time outside was a waste?” I am talking to  you if you are a parent that has a reoccurring appointment with a developmental therapist. I gave that world a hard pass. I walked into those spaces every few years and I always thought “This place is a bummer” I’m not giving my son over to this scene and dragging him out of the house to hang out with these well meaning, educated neurotypical people with their milestones and objectives.

balloon - CopyI didn’t have a farm, I was advantaged at tapping into the sensory world but my parents and teachers didn’t have language to value that. It didn’t mean anything actionable. The payoff was years down the road or simply something that gave me energy to make it through the day. The way I got the energy was invisible to everyone, even me. I didn’t know that walking the block delivering newspapers alone or riding my bike was filling me up. I just know I liked the smell of the newspaper, the sound of the wind when I pedaled. The sensory world has value and delight. It wasn’t a disaster to fail to fit in–it was just a part of my life. My life included social fails and sense triumphs.kerry and horse - Copy

Most times I did not meet the standard of average behavior with people. I had meltdowns and was contrary. I didn’t have a solid group of friends. For the bulk of my life, my friends were short term. Once a person got to know me, the relationship faded away or I was immediately rejected. That’s kind of how it is if you are on the spectrum and out in the world. Even with this, I played. I was allowed to play, it wasn’t taken from me and replaced with confined society and directed activities.

At the base of everything I write, I insist every child deserves to feel safe, accepted

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this cloud looks like a bunny

and competent. I took my block of development and turned it around. What worked for me, what got me to where I am today, with a family, with friends, with a job I like and society that suits me personally and doesn’t fall outside of a social norm. I have an independent life and when I write about being on the spectrum that isn’t a label I walk around with the way my son was labeled in grade school and walked around with it every day. Having these insights compressed our timeline for development. We made big strides and we did it by throwing in challenging experiences only after loads of sensory inputs. He drank from the well of play and took on things that defeated him on a play less day.

Filling our “schedule” with playful days meant saying no to doctor appointments and therapies that hog the autistic child’s calendar. Doctors can act as an ally but at the end of the day a doctor will only give you a few minutes and then typically 

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tasting honeysuckle

recommend more doctors, interventions and in some cases medication. Meeting the doctor was always time spent doing things that stressed my son out. Traveling for an unappetizing appointment, waiting, an unappealing exam room and for a brief conversation with someone that did not know my child in any setting outside of that office. The value of a doctor is that they see a range of children like mine. This viewpoint did not offset the agitation and stress of setting aside a block time for this interaction. 

If autism is outside your sphere of experience it is natural to look for an authoritative voice. For the first time in my life, I am grateful for my struggles, my humiliations, my failed relationships, job loss and late developing cultured behaviors.
brady at camp - CopyWe relied on his school for the experienced voice about what they were seeing and what we could do to get us to a place where our son felt safe, accepted and competent outside the home.
Our mantra was “you have to live in this world” and our hope was that he would grow up as an independent adult with a life that fulfilled him.
The inclination to treat autism like an illness is confusing and counter to the idea of developing a sense that you are an average human being with average feelings.
neighborsThe word “average” is undervalued and stigmatized to a degree. When I used the word “average” to describe my child, peers and family members would cringe and interject, ‘he’s not average’ Let me be clear, it is not an advantage to be treated as exceptional. Exceptionality breeds temper and a sense of entitlement. In our family, exceptionality is not a pathway to fulfillment because to get it, it requires social accommodation. Reliable social accommodation is found in small circles. Your  little corner of the world. Stray outside that boundary and people are insufferable to someone that lacks the ability to adapt, strategize. Society demands that you cope with discomfort, change, indifference.

grandmas pool - CopyChildhood is precious, a rare time and all too fleeting. Childhood is your chance to fill your little person’s tank with joy, fascination, sensory play and the tools to socially advance. Play is everything. Fight against the forces that take your child away from being a child and doing what children do best, in the place they do it best in.

 

A visit to the Mesa Typewriter Exchange

Because I am impulsive, a middle child, did not grow up getting presents and swag bags every day of my life just for being a kid, I have these obsessions with acquiring books and typewriters. More than I could reasonably use.

I have the typewriter of my dreams, the Hermes 3000.

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Sweet, right? Seriously? I want to eat it. If you scratch and sniff the picture it smells like mint cause it’s that minty fresh.

 Then I saw this sweet 95.00 electric brother typewriter. Looked like something my boys would use. Also, looked like a typewriter so thus, a great idea.
 so I bought it and brought it home, this is some of what we left behind.
 Corona. Works.
 Old school, Works, part of Bill’s personal collection.
 Shiny!!!
If you haven’t been to this wonderful wonderland, please take some time to visit. But buy a typewriter because it is magical, like having a convertible.
 

Pley.com –renting legos

This is NOT a sponsored post about Renting Lego Sets from Pley.

 Only 7 people read my blog. (This guy probably reads it)
 This is possible the most private place on the internet.

Yesterday my first box from Pley.com arrived, They are rental for service Legos. This is what our package looked like.

 You can make a queue and request sets.

LEGO® Technic Hovercraft 42002

You can buy a set. They come in this orange bag, but I dumped it out to try to build a hovercraft and enjoyed the simple pleasure of playing with Legoes.

 I don’t know if you can get more than one set a month but it seems reasonable if I finish a set quickly that I can send in for another one.
 The first set was free, I saw the ad on Facebook. Is this something you might like?
  • First LEGO set FREE. Then $15+/month.
  • Lost a piece? We won’t charge.
  • Clean and sanitized.
  • Free shipping both ways

The lego pieces come with everything I showed you, except they are zipped into this labeled orange bag. I’m into it. I like this idea. I think we will continue.

The Impossible Sight of a Ship

Travels with the Blonde Coyote

First Flight by Sarah McRae Morton First Flight by Sarah McRae Morton. 6 ft by 9 ft! My favorite from this show.

Apologies for the lack of posts lately. I stashed my dogs and my rig with friends in Seattle and flew east for two weeks. First I flew landed in Maine to attend the opening night of my sister’s show “The Impossible Sight of a Ship” at the Dowling-Walsh Gallery in Rockland, Maine. Sarah has been making her living as a painter for over a decade now and her paintings never cease to enthrall me. I’ll let Sarah’s words and paintings speak for themselves. Here is her artist’s statement:

A family tie brought me to Maine. I have returned, following windy curiosity to see whereseafarers fed my favorite painters, find the “Grim and Wild Maine” described by Thoreau, follow water veins he coursed with Penobscot guides, and hear the wrath of the ocean on the fortress walls…

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Munchautism by Proxy or Cultivating an Identity for Myself

On August 4th, both boys started school.

For the weeks leading up to that golden day, I fought my own battle with munchautism by proxy whereby I fabricated autism challenges that did not exist so that I could have something to do with myself. For 9 years I’ve smother-mothered Brady (and Max for 6).

Boston news: Under an armed policeman’s gaze, the gorilla prowled along Seaver Street last night. It took at least four tranquilizer darts to subdue the ape.

Ever since Brady started school, I’ve been right by his side shoved somewhere in the building like an escaped zoo animal roaming the suburbs that they can’t find a powerful enough barbiturate to knock out. Clearly they must need me?

Things that I considered doing

Things that I actually did leading up to August 4th.

10. Bought an iPhone for Brady on the sly “in case he had a meltdown”. It sits in his bag untouched except on rare occasions when he pulls it out to text me or his grandparents something vital like AAAAAA akjdfld;ajdka;l or takes a picture of his open mouth 9,000 times. That’s a good use of our money. He’s mature enough for a phone.9. Drafted dozens of letters to Brady’s poor teacher who was http://www.busyenough.com setting up her classroom in a brand new building in sweltering heat. Sent a two or three or five or seven to her. Hi. Yes. I’m sorry.

8. Texted Brady’s teacher about modified days, skipping music class, skipping sibling care, getting picked up early and personally by me. Thought about sitting in the parking lot eating Dairy Queen and playing on my phone. Opted to ask my friend to drop her son off during the day to keep me out of school. That worked fine except on days he did not come, then I drove around listening to Kenny Rogers on repeat and ate Dairy Queen.

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7. Blathered about homeschooling in a boring way to any adult that gave me a second chance. Told the boys I would probably keep them home from school half the week. Told them it would probably be “too much” and “better to be with me” Mr. Dreamy gave me the stink eye.

6. Overshared with Walgreen’s cashiers (I don’t drink or go to bars, so this is a my go-to social inappropriate outlet, the cosmetics counter at Walgreens or Fry’s checkout)

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5. Ate 5 boxes of Captain crunch with Crunchberries. Dry.

4. bought about fifty new books and piled them all over the house, ostensibly for the boys who could not/would not read

3. because I let them play minecraft or surf the internet non stop while I ate captain crunch and stared at Facebook or piled books

2. Wore my pjs all day and put my hair in a pony tail.

1. And on the day before school, I went for a horseback ride and signed up for art lessons.

And I started the real work of finding out who I was and where I went after all this time.

Because it’s not about me. He’s already made it. I feel pretty amazing, now that I made room to let that idea sink in.

Joshua Chamberlain, Little Round Top, and the Memorial That Never Was

And that is three — could reblog these forever — instead remember to read / show the kids before we go back to Vincent’s Spur

The Blog of Gettysburg National Military Park

A few months ago, prior to the arrival of the frigid weather we are now enjoying, I had the pleasure of bringing a group of visitors around Little Round Top. It was a fairly predictable tour. We visited the requisite sites as we made our way south along the crest of the hill, namely the Gouverneur Warren statue, Hazlett’s Battery and the 44th and 140th New York Monuments as we roughly followed the progress of the battle on July 2nd. It was a good forty-five minutes before we made our way into the trees and down a tail-like ridge known as “Vincent’s Spur” which runs across the southern face of Little Round Top. Our final stop of the program was at the 20th Maine Monument, which is situated on a shelf of rocks well below the summit and nearly on its reverse slope.

I usually stop here…

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Gettysburg 150th – July 4 Battlefield Experience Programs

Because this is one of our favorite places to visit. I want to know as much as I can.

The Blog of Gettysburg National Military Park

    Alexander Gardner, Timothy O’Sullivan and James F. Gibson were photographers. Gardner had managed the Washington, D.C. branch of Matthew Brady’s photographic gallery from 1860 to 1863, when he left to establish his own studio in the city. When news of the battle at Gettysburg reached them, Gardner and his team assembled their equipment and set out for the battlefield. They arrived on the battlefield on July 5. Of the sixty negatives the team would produce between July 5 and July 7, when they departed, twelve, or twenty per-cent, were created on the farm of George Rose. The Rose farm, which is about two miles south of Gettysburg, off the Emmitsburg Road, was the scene of very heavy fighting on July 2. Rose’s farm included the infamous “Wheatfield.” But much of the heaviest fighting occurred in Rose Woods, which bordered the Wheatfield to the east, south and west. By the…

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