a dinosaur says moo

our journey in autism land

Sick again, strong again, learn again

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Big Moments for the week:

Pushed me to the fridge to get him Rice Milk

Grabbed my hand and lifted it up towards the Skittles

Smiled at Kathryn on too many occasions to recall

Let his sister touch him

Rolled a car back and forth for a good minute before flipping it upside down to inspect the underside.

 

As happens every month now I end up with a Rotavirus. ( At least that’s my story. )
When we enter a public bathroom, Hobbs and I, my legs go to the ground.  I pull his pants down while keeping his hands off of the toilet, the flush, the toilet paper, the bars, the walls, the tiles, and the wonderfully enticing pool of urine under the bowl.  He is exploring with his fingers and his mouth more than ever.  Touching surfaces and remembering their sensations by immediately placing that hand in his mouth.  I help hold his little body up on the toilet, arms braced on the seat knowing that the second he gets off his hands will enter his mouth.  Ninja speed, distraction, and constant correction only go so far, but 9 times out of 10 we make it to the sink, both his hands grasped at the wrist by my one hand, trying not to cut off circulation.  I do a pivot, turn, toss and lift his little body up so his legs straddle my thigh bracing his body against the sink.  Turning the faucet on, redirecting him from splashing or soaking his jacket in the fountain of water, I somehow manage to get soap all over his little hands.  Nine times out of ten he does not eat the soap.

 

We scrub, we sing, hand over hand we turn off the faucets. (This has been a 20-minute adventure by now and my dinner is very cold).

Paper towels require a grip, were working on that, but honestly nothing is remotely enjoyable about removing water from hands… it is so much more fun to lick it off.

I open the door with a damp paper towel protecting his little self from infection, disease, and filth.

The next day I’m living in the bathroom with a stomach bug.

But why don’t you put him down after he washes his hands to wash your own better?

Because a bathroom has tiles, and a single drop of water will sparkle, shimmer, and shine like a Christmas ornament on the ground ready to be inspected by little hands, smeared by tiny fingers and destroying any semblance of cleanliness.  This I know.

The laws of fluid dynamics are truly breathtaking.

One only has to witness a toilet flush in the presence of my son to realize the joy of scientific discovery.  He is Bill Nye, Temple Grandin, and Archimedes shouting from the clenched right side of his tiny mouth.  The vortex of water or vortical motion if you’re a scientist is incredible.  Water is pushed down straight from pipes under the bowl, yet immediately swirls in a regular and breathtaking motion.  And then by some continued magic the water refills, the universe is back in order quiet and still with a glass sheen reflecting light back at us because of surface tension that we see yet never really perceive.

The hydrophilic surface of porcelain causes liquids to pool and generate force if acted upon, hence why spashback happens to men who attempt to aim at a 90-degree angle into the urinal.  Hobbs sees the agitated water movement when I pee, (yes I pee in front of my son holding him off the ground because after he goes I really, really have to go) and sometimes hand-flaps himself with such joy that I almost loose grip, or loose my pants to my ankles.

NPR just recently did a story about finding the secrets to the universe in a faucet and a toilet and I couldn’t help but cry as I drove in to work listening.  My little scientist made me look up a few terms, do a bit of leg work, lock away some information so that one day, if he ever asks we can experiment and call Kathryn’s friends in Australia to have them send a video of their toilet flushing.  We can read about gravity together, learn about the axis of the earth, and play with a compass and a magnet.

Or perhaps he will ask me about the inventor of the modern toilet, about the roman sewage system.  I like that he makes me different and so proud to be a dork, nerd, and weirdo.

Moving Boulders from 8-5

 

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My new BFF Tim at Starfire told me a story of a recent visit from one of the stars of Wretches and Jabberers.  If you haven’t seen the movie it highlights the travels of two friends as they help to break down peoples assumptions about those with disabilities.  As one of the films stars was in town for the premiere he was asked if he preferred to communicate through language or his art.  His response, and I’m paraphrasing from the second hand version of the story, was that art is water and words are boulders.  What it must be like to attempt every day to find and then push a boulder to answer a single question.  What it must be like to see the signs of impatience in those around you as you struggle to find the word, grab it, and wrestle it up a mountain.  This week we got the progress report for our son.  Kathryn and I couldn’t be happier with the progress.

At each stage of progress mastery is measured by being able to complete a goal three times in a row for three days in a row with no lapse.  Once a skill is mastered it is the job of his whole team, and our family to maintain it.  Use it or loose it.

Seated for more than 10 minutes of structured one on one therapy without escape tactics. (sometimes therapist talk sounds like they are describing a super spy)

With the ability to sit and work for short spells he can learn, he can grow, and he can be taught.  This is a boulder crushed into dust that he can keep sweeping out of his way like the leaves he runs through with ease.

The other night as we played five little monkeys where I clap to “five little monkeys sitting on a tree” then raise my hands to my ears as antlers (don’t ask me why) and sing “teasing Mr. Crocodile, you can’t catch me”  Hobbs eyes were fixed on mine… each and every time.  Fixed on mine, straight on, with the same kind of recognition I have seen only once or twice in his life.

80 % accuracy in identifying pictures, objects, actions with minimal prompts.  Not only does he know them, he can identify them and make that knowledge known to his therapists.  I count that as two boulders launched off of a catapult into the side of a mountain.

Mastered 10 imitative actions/tasks with objects three days in a row.  Imitation is the sincerest form of flattery.  Realizing that he can do something just like someone else is enormous.  One of the traits that most children have is the ability to be little human parrots.  Rewarded by smiles and parent’s giggles when they imitate them they learn to observe and imitate to explore the world.  This is the foundation of learning, show me how, and I will follow.  Kathryn always referenced her time as a dance teacher as when she clearly realized that some things have to be learned through the body… You can see someone do Salsa dancing and try it yourself, but your hip movement will be forced and an insult to the Cha Cha.  She would hold the hips of students and let them feel the actual movement of muscles to train that into their body.   Boulder hit by wrecking ball and moved another mile down the road.

On isolated instances Hobbs has demonstrated the ability to color independently for up to 31 seconds.  Coloring is the basis of writing, writing is communication, learning, living, exploring, knowledge gathering, and world changing.  His crayon is reshaping the world!
There are so many more skills we have to work on for this year and forevermore, but right now,  at this moment, I couldn’t be prouder of our Rock Star.

My therapist wants me to live more in the moment, live more like Hobbs with his pom-poms.  Each and every time they are thrown into the air he is just as excited as if it is the first time.  Eyes track them as they fall body strained in excitement.  Just as enthralled as if he is seeing them like never before.  I tell my students to draw the tree they see not the tree they know.  That every cardboard box in every still life is an entirely new organism that needs discovery.  It is a pom-pom day.

Playing on stairs (with) other kids

The other night Hobo and I went to a good friends house for a Christmas party.

We were the first to arrive and without all the noise, and chaos of other people I happily let Hobbs explore their home.  It is a real joy to let him play around other children, to let his behavior be seen by other kids, young ones who seemingly do not judge his Stims and repetitive behaviors. 

We brought his new favorite toys: glitter pom-poms.  The quarter sized cotton balls that kids use in crafting activities.  Hobbs has a special interest in throwing them on the ground, falling flat on his belly and corralling them into a pile, picking them up to toss them back in the air.  I have often imagined that when he sees them fall time travels slower.  Somehow he can observe each one as it falls taking measurements and data with his eyes like he is inside the matrix.  He tossed them on the hardwoods, under the feet of our host who carefully kept watch to not step on him as she cooked.  She gingerly tapped them back to him, engaged with him on his level.  Making sound effects to get a reaction that was wonderful.

In the living room he continued to toss them as children became excited to join in the play.  Their daughter began cheering and celebrating while she threw a few in the air, handed them back to Hobbs and shared in his game for a moment.  When he didn’t react to her playing with him she moved on.  But she entered his world at his level for a moment and I couldn’t have been more proud.  A half filled helium balloon became the next toy.  As their son threw it in the air, batted it around, Hobo squealed for joy.  Hand flapping excitement to see something shinny jump around in the air.  They jumped, laughed, and tried to reach for it as it stayed aloft out of their hands. 

Climbing up the stairs to their play-room, Hobbs found a train table with the third greatest entertainment unit: doors.  Little plastic train depot doors that could hide pom-poms, that when closed brought order to the world, when open became entirely new lands and options.  As two peers raced trains around the track he continued to play with the doors, present with them, close enough to play with them but still in his world. 
I often watch hawkish ready to swoop in if there is a meltdown (luckily these are rare).  But on this night I stayed back, and actually enjoyed myself.  His game evolved as I ate dinner with friends into tossing pom-poms down the carpeted stairs, of the second floor.  Something he does at home with clothes, balls, dice, and just about any object you can imagine.  Longer drops are better. 

As I sat eating one mother asked “Ryan what does this mean?” as she raised her index finger to her cheek. 

I said “It means ‘I want candy,’ but for Hobbs it means I want anything.” 

“Well your son wants anything.”

This time it meant water.  He had eaten some contraband bread earlier in the evening just to keep him content.

 

We have been taking him out a lot more.  With my wife in New York this past week we needed to get out and run errands at night.  Letting him play at the Chicken and Waffle Fries playground (yes we eat at the restaurant that will not be named) has been a great escape.  The play area was virtually empty except one family.  A little boy maybe only four who’s mom was on the other side of the glass played and watched as Hobbs hopped up and down after exiting the slide each time.  He asked Hobbs his name, to which my son replied with an epic loud shouted “HAAAAA!”  With an Elvis Snarl half opened mouth he shoots that sound out with some serious strength.  It sounds like the drill sergeants from movies. 
“Will you be my friend,” was the response from the boy.  He kept smiling at Hobbs as my son hopped up again and landed straight on his knees, lifted his shirt as he lay on the ground to feel the cold springy floor with his exposed belly.  He kept smiling and tried to encourage Hobbs to chase him into the playground equipment.  For a moment it looked like he was about to follow, but paused on the second level to entice his daddy to play a game of “fingers through the netting.”  My hand to his hand, fingers being pushed through the plastic netting, laughing when I catch a finger he is begging me to push my pinky through to keep the game going. 

I see progress in all of this: progress and obstacles at the same time.  I’m a worst-case scenario thinker.  I’m a fearful man who wants friends for my son.

When I post on Facebook about an epic milestone of nodding his head to answer a question I get 100+ likes.  And rightly so, it is an amazing step.  But I know it is just a step, a tiny step forward and looking at all of the social cues of the amazing night at a friends house, how will we teach him to navigate those when they will only get more and more complex? How will we teach him to play with children when the play evolves into imaginative social games?  That little boy at the restaurant was accepting of Hobo this time, but when he is 8 and he wants to jump on the ground and feel the floor with his belly which child will befriend him then?

These questions are far out, these fears are things that we will take care of after we make progress on the issues at hand.  I understand that, I recognize that, I get it.   So now we read on his sheet that he hugged another child at his school, that he gave a teacher a kiss, that he brought a toy to a teacher to get her to help him and I think every one of these moments makes these fears a little bit smaller.   We don’t have time to dwell on the fear there is too much good work happening for that.

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Walking in circles

I could be mad at him for staying up tonight. I could also blame myself for changing the routine, for not preparing him soon enough for bed, and for not going to the pool today.  But the house was a disaster and we grow ups had to clean.  Hobbs got 15-minute time-in every hour.  15 minutes where we did everything to engage with him before taking him potty.  But he was really on his own today, and maybe it was a bit much. As we do our laps around the kitchen to living room, circle the stairs and past the bathroom I think, now is the time I should be really looking for a compression shirt.  This little man is quickly becoming a big man.  Both kids are pulling night shifts tonight; both have had two extra bottles-each, and both keep making appearances.  Eliza with her screams and cries and Hobbs just opens the door to come downstairs to play.  No real sound except the staccato vocalization of “Ha,” as if he is testing out his response to the movie I wanted to watch this evening.  The only rooms in the house that are clean are the children’s, thanks to Kat.  For all of the work that I do downstairs to get the kitchen in order she does ten times over getting their rooms spotless, the clothes washed and folded, and finds time to help organize our mess into something that functions.

 Tiny hands are playing with my neck as we move from a darkened formal living room into the light of the kitchen.  Hobbs has a new habit of letting his fingertips explore the tiny neck hairs. Sometimes his little bitty fingers run up into my hair and he brushes it like I’m sure they do a school.  It is surprisingly relaxing and one more way that I know he is in there, trapped inside by a lack of words and inability to show his expressions.  If we lived in a monastery no one would find our habit of pacing in circles that surprising, in fact many might join us.   Walking out your problems has always been seen as a viable solution. 

When dad was stuck in the UVA medical center after falling from the tree on to concrete or maybe it was being dismissed and discharged from another nursing home that couldn’t handle him (I’m not really sure) we were all beside ourselves with exhaustion.  We spontaneously left from a fancy restaurant on the main square, the type of place that you need to be upbeat to handle and we were slumped down with emotion talking living wills with the whole family.  Our food order was lost in the kitchen and as we had all skipped lunch to get to the hospital. Our crankiness was at full blast.  The only thing I remember is mom left a nice tip, more so than was necessary for us leaving before our food arrived. We were angry and hunger.  I think an artist friend of mine’s husband owns the place, but it doesn’t matter.  The next morning as mom stayed in the room Shawn walked me through the UVA Campus.  As a student of architecture he knew that Jefferson designed the gardens around professors houses, which doubled as classrooms as spaces to walk out complex problems in the open air.  The inventor principles that physical movement would help realize an answer.  If we were in a monastery we would both have strings, his would be a shoelace lowered over his hands and inspected with intensity, I would have prayer beads counting out the wishes, hopes and prayers.  Saying prayers to my dad in heaven asking for patience, asking for ways to show my son he is loved that entice little smiles that mean ‘message heard loud and clear dad.’

Being more like Dad

I knew that one day I would become a man with hair on my legs but not on my knees, just like dad.  Knees are for calluses made strong by playing on the ground, wrestling with a toddler, crawling on the floor retrieving puzzle pieces and heads of Lego men.  What I didn’t expect was how we would play.  Hobbs has taught me that play is and will always be the most important part of our day.  Tug of war with his blanket becomes a chance for a shared glance, having him sit in the lap of Kathryn and get hand over hand assistance to turn a crank again and again as he makes the jack in the box pop out is a moment when closeness, comfort, and love is shared.  We have our hard times, teaching a defiant toddler to run after a wooden block he threw behind an arm chair becomes a gator wrestling tournament.  But in that moment, when his arms start flailing and he smacks me in the face, when I feel most helpless and powerless to even begin to address how wrong that behavior is.  How hurt it makes me feel, I have to keep walking him, limp legged, protesting behind the chair and have him fetch the red square and return it to his mother who looks just as exhausted and shows him love and thanks him with hugs and kisses, zerberts and raspberries on the neckImage

We push him hard at home sometimes too much.  In his big man clothes and young man haircut he looks so mature.  Perhaps it is his quiet inspection of the world that makes him look older than his age, and much older than his developmental age equivalent.  He’s just catching up to being about two years old now in most things.  Able to string five beads on a shoelace with minimal assistance, he is up to a six piece puzzle with almost no mistakes, he is according to his school “rocking at mastering skills” much faster than expected.  We knew all along that he would blow them away once they started working with him fully.  But at home we need to just love him.  We need to let him explore the world alone with a pile of dry dog food in a tray, pushing them into a small cup indention, scooping them out, throwing them on the floor, and cleaning them back up till his heart is content.  That is his cartoons, his “after work beer,” his down time.  It isn’t a good time to work.  So we as a family need to think about more moments like the jack-in–the-box.  More moments where we can all crawl through tunnels, leaving his PECS binder out at the ready for him to request a Veggie Straw or a Skittle.  We get three hours a night with him to show him that we are his parents and we love him with all of our hearts and that every single day we hunt for smiles.

We have found the ghosts of Autism and now we need to find the smiles of it too.  Back to the basement to see what we can make into a game, what  he can turn into a toy, what we can use to get a laugh and a happy guy to snuggle up beside us.

requesting candy

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I want trick or treat.  

Hobbs pulls and tugs on his water logged PECS binder and hands over the Velcro strip to our neighbors.  Sitting under shelter in their garage wrapped in blankets with a small happy yapping dog it is hard to really get him to finish his communication by tapping each card in sequence.  They hand him a candy bar that he has to be asked to put in the bucket.  It obviously wasn’t of interest to him while rain drops are still falling around his excited head.  At therapy we gave him a single skittle each time in exchange for the sentence.  Something that doesn’t work with tainted candy fears in public.  We went to two houses total.   Waved at a third neighbor up a tall driveway who looked less than excited to come out into the cold rain. Two houses total but that was about all we can really take.  In the end it just seemed a lot easier to go home, dry off and pout. (I did the pouting)

He seemed most interested in the waterfall coming down the side of the wagon’s cover.   Built to block the sun it did little to protect my sweet boy in the rain.  Sucking on the fabric like a 3 o’clock shirtsleeve.  Arms drenched, pants soaked, we were cold in costume.  Wreck it Ralph and Fix It Felix helping each other experience this top two holiday.  Kat had the princess bundled up ready to show her off to the neighbors.  Two Georgia princess ambassadors guiding the foolish boys.  We waved at kids in poncho covered costumes,  Singing in the rain transformers and vampires.  As out favorite neighbors went to drive down the block to the garage Halloween gathering we felt left out.  Another event that seemed beyond the hassle of getting everyone ready.  Changed, redressed, fed, bottles made, bathroom break again, and out the door with enough entertainment in case the world shut down and we were forced to live out our days 15 houses from our home.  That was until Kat looked through her email again to confirm we were invited.  

Rain makes me grumpy.  A cold son who doesn’t get to show off his amazing skill of handing people his words makes me even more grumpy. I should have had coffee to scare the grumps away, but in the end Halloween this year was:

1. Our youngest being passed around giving the neighbors a new dose of baby fever (she has that effect on people)

2. My friend taking the iPad inside to confirm my theory that the new x-men trailer is pretty sweet.  

3. The best family costume I have ever had the pleasure of taking part in.

4. Hobbs jumping around the other children to collect and throw leaves in the garage.  

Kat renamed the leaves, autumn confetti.  The three pieces of candy he got from the neighbors I ate.  They had milk in them.  He thoughtfully and with surprising patience ate the four bags of skittles I snuck to people to give him piece by piece so he could practice making requests in a social setting.  My wife made us some amazing costumes that were almost totally wasted and unseen by the world.  She really is wonderful and loves her boys so much, this one included.  Our daughter was as always beyond cute, but that little guy is a heart melting machine.

Next year we’re crossing our fingers to hear him say “I want trick or treat” in the cutest voice possible, no sentence strip.  We keep making fake Hobbsy voices to talk for him sometimes, the same way that we narrate what the dogs are thinking… In our minds Hobbs sounds like he has his bottom lip sticking out constantly and is on the perpetual verge of adorable tears.

Fish Viewing

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Friday was the school field trip to the aquarium with both sister schools.  10 little rock star children in their own private universes with at least a parent per child attempting to focus, direct, guide, or merely steer the child through the aquarium.  He didn’t seem that into it, but that doesn’t mean anything frankly.  Not being visibly excited might actually be visible focus, and perhaps that is a good thing.  What he tolerates verses what he is really sincerely interested in makes it hard to expose our man to new things.  I think he is still too young to understand that these fish are right here and beyond the glass.  There were of course exciting moments.

Aqua green and blue lights in the shark viewing theater made fingertips blue and happy children climbing on the carpeted incline up to the glass donated some of their joy to Hobbs.

 

Ice-cold salt water licked off of three fingers with a full lip smacking mmm, mmm, good face while teenagers on a school field trip squirm and try not to smile as they pet a horseshoe crab.  He gave an interested look for a moment too long to a teenage boy who looked like an amateur rodeo star.  His outfit was not ironic, and included patches from 2011,12, and 13.

 

As we all stared up at the white tip reef shark that engulfed our view in the tunnel, children grasped.  With our bodies under water, sharks swimming by, little friends point, track their movements like agitated hunters, they pause and lean against the glass which is surprisingly warm on our dry side.  My little man is locked on the shadows and reflections of wavy light on the floor.  He has always been a shadow hunter.  One of the first real interactions I remember on the changing table.  Peek-a-boo didn’t work, he was only ever really interested in a silly effeminate British voice I did saying “stinky Baby” over and over.  But the real interaction came from the moment I realized he was more interested in my shadow at the changing table that he was at me.  So I encouraged his arm and hand to chase my shadow around.  Holding at least one hand on his little half naked body so as to not let him fall, I danced, swerved, jumped, hid, bopped up and down as his little hand tried to catch my lightning fast shadow.  When your child doesn’t look at you during playtime you work with what you’re given.

 

On this trip he was finally old enough to have adventures in the indoor playground, having those families around to help block his vocalization with their loving smiles, so for this trip I didn’t get embarrassed.  Watching them chase their own children, see their faces grow anxious as they strategized how to get their child to transition from one exhibit to the next.  We didn’t call their names when they ran off, we chased, one child with a backpack and tether attached to his fathers hand that I would have two years ago made a disparaging judgment about.  “I will never put a leash on my child” was a sentence I remember saying as my wife and I walked through Disneyworld.  We were adamant about teaching our children that if something wasn’t ok when you are fourteen, you can’t do it at four.  Four seems a lot closer now than I really want.  So what do we do?  We do even worse than a leash; I wear him on my back.  He doesn’t even get the chance to learn to stay close, to learn to walk beside me, explore close, and be asked to come back when he darts off.  Our backpack saves our lives at night helping him get to sleep, it makes traveling around running errands easier, but it doesn’t teach him to come when his name is called, and as we now know, we need to teach him/correct him about 1000 times before he starts to fully get it in his system.  So the next day we successfully transitioned him from backpack to shopping cart seat for an entire Target run.  Baby steps.

Dinosuar Says Moo is open

“It was what I assume every parent feels when they get to just let their child run around the playground unsupervised.”  Kathryn eloquently summed up our feeling about Saturday at the Museum.  Watching Hobbs run in a space built completely for him, safe, happy, and full of exciting stimulus was a dream come true.  Three years ago he came into our lives and changed them forever.  Now he is changing the world.  I know it is just a gesture of awareness for others, but for our family it is a safe haven in our most cherished temple of creativity.  He gets his own space in a museum where art is valued.  Having his drawing inspire and become the blueprint for a ball return game on the putt-putt course means that we have finally gotten to draw together, and made a stride to share something that I love so much.

 

Inside the tightest spot of the sixth floor

we see a smile, a rare sighting in public. 

Public is noisy, aggressive, and sounds bounce

too far in uncontrolled manners. 

Inside the tightest spot of the sixth floor he pulls his legs in tight,

fetal and content.  We get glances,

little eye flickers in our general direction

meet our expecting gaze

trying to determine if he is happy for a minute more than yesterday.

Compare and Contrast

We had our first date in a long time this past week.  We both know we need to find someone who we can trust will be able to work with Hobbs and not just let him stim out all afternoon.  Mom came to babysit the two kids in the afternoon, because even though they would both be up, they wouldn’t both need to go to sleep at the same time.  Babysitting with a bedtime thrown in almost requires a team to coordinate and handle the substantial needs for ritual and comforting.  Not to mention the fact that only Kathryn can really get Eliza to go down, and Hobbs sleeps so much better if he has a kiss from his mom before bed.

So we got to go see a matinee at the art theatre in Marymount.  Enough Said was a reminder of the fantastic fact that we actually found each other, and a frightening prediction of the fear of sending your child away to college, near or far from home.

We held hands and shared popcorn, which for us is kind of like heaven.  As we walked in the drizzle to get coffee we talked about how sad it would be to send Hobbs away to college.  How fearful it would make us both.  Kat said it would be such a bittersweet moment, knowing he made it, he achieved something so incredibly substantial, yet what would we do if he didn’t need us in the ways we see him needing us now. 
I unfortunately watched “The Story of Luke” (it was on Netflix and Hulu recently) which further exacerbated my fears.  A young functioning adult with some substantial issues is in search of a job and a fulfilling life as a grown up after the grandmother who raised him passes and he is told to get his crap together.  His forced smiles, discomfort in virtually every situation, total lack of social graces or understanding of clues, and an inability to regulate without extreme ritual made me think about our precious little diamond who is going to be called Retarded most likely multiple times in his life.  I’m praying that he never asks me one day as he returns home from school what that word means.  I pray that he never hears it, and that the world is as understanding as our close friends and network.  But if I was called everything under the sun, I’m sure he is in for some epic name calling as well.

It is hard not to look at him now and wonder what this little man will turn into, what amazing journey will he lead us through that is totally unexpected, uncomfortable at times, but completely worth it in the end.  It is hard not to look at students I have with ASD who are highly functioning, navigating at their peers pace, and trying to make art the best they know how.  Having conversations that end in difficult sighs, where being heard seems to be missing for both parties, and where I have to throw away all of my metaphors, figures of speech, niceties, gentle tactics of engagement, and basically the subtle way that professors in creative fields generally give feedback, for bluntness, directness, and highly specific and focused criticisms.  And when my patience is at its very end I remember that this may very well be my everyday.  Not just in our home, but with the ever growing number of diagnoses and school systems pushing kids who show any interest in expressing themselves directly into art, the percentages will only get higher.

When people ask how our son is doing in his new school, they ask with an enthusiastic upbeat voice.  As if there wouldn’t be any way we would say anything other than he’s doing fantastic!  They smile, and ask with a tone that already knows the answer that I am going to give.  Yes, he is doing amazingly well.  We can’t believe the progress he is making.  Everyone keeps on commenting on his progress.  Even the developmental services people say he is showing great Imitation skills, vocalizing more, echoing sounds more and just has a better ability to stay attuned engaged and focused for longer periods.  I say something like those statements, but then I always feel the need to add the disclaimer.  As if in the question, how is Hobbs doing, I’m assuming they are wondering if he is closer to NT (Neurotypical watch the pbs film as well).  Or they are assuming that there has been such drastic results that it is totally night and day from the last time they met him. 

Our amazing isn’t your amazing; our incredible is something made of giant microscopic achievements.  I feel like the best answer sometimes would be, he is doing so well, his focus time is unbelievable.  He stays tuned into his drawing on paper now for 20 second stretches, and he is able to focus on 2 sometimes 3 pieces of the puzzle before testing if he can flee the room.

But perhaps this is my baggage and own expectations getting in the way.  Perhaps I want to see those kinds of mega jumps like everyone else.  But this isn’t a long jump, or hurdles, this is day in day out mountain climbing with lots of interruptions for playing with shoelaces and pouring out Chex to find the apple cinnamon ones and not the nasty plain ones that only deserve to be on the floor. 

I just remembered that I held a junior record for POGO jumping.  Something close to 3,000 in a row without a break.  I would have kept going but I had to use the bathroom.  I wonder if we can challenge each other when he is 5 or 6.  Something to compare and contrast together in the front yard, after he throws leaves from the same spot a fifty or so times, and Kat and I talk to him about our favorite memories of fall growing up, and ask if he wants to come inside and look through our photos of going to the pumpkin patch as a family every year. 

Safety and Autism: Letting the Neighbors Know

We are out of the closet now as a family!  Last night at the annual block party/ homeowners association meeting we let all the families know about our son’s autism.  A few families we talk to specifically about our journey, Hobbs’s school and his needs.  A mother teaches at a school that has a large population of families in denial, families that don’t seek special services till their children are in the second grade.  She was unaware of his autism, but at the same time, he is only turning three this October, and what looks like little kid behavior we see as self imposed loops, and obsessive stims.  She was extremely interested in his school and applauded all the effort we were taking.  During the actual meeting Hobbs was on my back, stimming with a red shoelace over my left shoulder as he does most nights.  Our Doctor friend wanted me to speak up about the need for speed bumps on the street.  My voice was shaky and I knew that there would be push back so I went out with the real reason we want the speed bumps first.

“So some of you know, but it’s important for everyone to know, our son has moderate to severe autism.  One thing that this means is that the sound of your voice right beside his head, and the sound of a car barreling down a street are both very difficult for him to hear and process.  Additionally we walk every single night, I wear him on my back so he gets a full hour of compression time to help him get ready for sleep, and he needs rhythmic movement to help his body regulate itself.  We love this neighborhood and moved to a suburb so we would be safe, so our kids to learn to ride their bikes in the street, so we could play as a family outside in the yard and be safe. 

Every night as we walk, cars floor it down the street, ignoring the 25 mile and hour speed limit, some going 40-even 50 miles an hour cutting through our street to their neighborhood.  There are many new families with young kids and frankly it isn’t safe for any of them.  Most nights families are down in the cul-de-sac just so the kids can play outside and we can ensure that no one is going to get hit.”

Three other people spoke up saying similar things.  Our treasurer spoke about his experience of being frightened by a car probably going 50.  He took a photo expecting to see a teenager but it was an older woman driving a minivan. Most people were in agreement that something has to be done, but the conversation quickly switched to a point of hostility as one family adamantly does not want speed humps because of the difficulty driving in the snow (like that is seriously an issue), and multiple people stated that the neighborhood tried unsuccessfully in the past to get speed bumps but the city didn’t want to install them because of Ambulances. 

I know speed bumps are annoying, that is their point. 

They are annoying if you are going too fast, and they make you slow down.  They are not a problem if you are going the correct speed.  Our across the street neighbor started a line of questioning about closing down the cut through street to the next neighborhood.  Something far more extreme that we want to see happen, but it would certainly be a solution that would work.

Families talked about how they shout at cars driving too fast, how they take their jogs in the park, or in the adjacent neighborhood to ensure safety. 

As I read the statistics from the National Autism Association about accidental death by drowning being 91% of total US Deaths by children with ASD ages 14 and younger.  Please HAVE A PLAN. I can’t help but think about the open culvert by our house.  Water from run off and irrigation systems pour down into the culvert and down a 2 foot drain pipe with no bars to protect children from falling in.  I know that no one in the neighborhood will do anything about it, so I will have to bring it up to the city office to make a case for protecting our son, and daughter for that matter.  But the cars are an issue for everyone and one that I need the homeowners to fight for with me.

At some point in the discussion an older neighbor asked our friend if he had considered the neighborhood before he moved here.  If he considered how fast the cars drive.  If she weren’t suffering from some substantial illness (someone told me she hasn’t been the same since getting sick) I would have screamed at her.  Of course we were concerned before we moved here.  WE PICKED THIS NEIGHBORHOOD (a 30 minute commute from our work) BECAUSE IT WAS A SUBURBAN NEIGHBORHOOD WITH 25 MILE AN HOUR SPEED LIMIT!  After a totally caught off guard response she stated that every child who grew up on this street had made it so our kids would be fine.  What kind of self-righteous logic is that?  By then I was only half listening to her suggestions that we put a leash on our son, and tether him to a tree in the front yard.  Thank God I didn’t hear her fully.  I don’t know what could have stopped me from screaming in her face at that point. She is the minority, she is ill, and she is just uninformed.  In the south I would say ‘Bless Her Heart,’ but in my heart I know she is not an opinion that is shared by our neighbors.  As our Doc said when I went back to his garage to help clean up after putting Hobbs to sleep, “She will be dead sooner than later anyway.”  It was hard not smiling.

We will give our son swim lessons, and do what we can about the gutters in the neighborhood.  We will write the letter for the city and have them look into speed bumps. We will keep educating others about our world and ask for their cooperation and support as we just want to make this place safe and a healthy environment for him to play. 

What does it feel like to have opened up about our son?  It feels like nothing has changed, but perhaps the support of a few more families that see our yard a bit too high, see me on the street pushing him and guiding his legs to move on the tricycle, perhaps at least their cars will slow down enough to piss off the cut-through drivers to slow down and remember that this is just a little kid, and not worth an extra 15 seconds to get home.  I wasn’t asking for sympathy or for validation, I was just stating a fact:  our son will not and does not hear you driving.  Please help us slow people down.  We have a real concern for our child’s safety.  3 cars in Orlando hit an ASD 7 year old in 2012.  In Bakersfield an ASD child ran into traffic and was killed in 2012.  The number of stories that mention ASD and hit by car are growing and growing

Most kids don’t listen when you yell “CAR! CAR!  Go to the side!”  They keep going and you have to tell them hundreds of times, and continually be vigilant to keep them safe.  But what do you do when the only way to get a child’s attention is to put your hand on their back and calmly, almost quietly tell them an instruction with their name first, and then wait for their attention to change to you.  How on earth are we to keep him safe?  Our fight has just begun.  Wish us luck.

 

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