Reading List

I wanted to learn about other children like my son.  I wanted to see a glimpse of the future in one of their stories.  I tried half a dozen books and was unable to finish any of them.  Either they described children years older than my then-18-month-old son, or were filled with content that made me furious at the parents (who were the authors) and sick with grief for their children.  I tried There’s a Boy in Here, in which the mother recounts spanking her toddler son over and over, harder and harder, because she couldn’t get a reaction from him.  I tried Carly’s Voice, in which the parents openly treat their daughter as less-than, refusing to believe in her no matter what.  I tried to get through that one, but when Carly’s parents remove her from their home and place her in an institution where she is subsequently sexually abused I just couldn’t anymore.  

I didn’t understand these books, these parents.  I didn’t understand all the 5-star amazon reviews full of people sympathizing with these apparently long suffering parents.  There was a rhetoric of broken, lost, or missing children surrounding the Autism literature I encountered.  I didn’t feel that way about my son.  I would look into his beautiful face, his unfocused, far-away gaze that seemed at once unfathomably wise and tenderly innocent, and to me he was nothing less than absolutely perfect.  

It was entirely by chance that I stumbled upon an Autism documentary called Loving Lampposts.  This film changed everything.  At last I found voices that echoed my thoughts- individuals who did not believe their children were lost or broken.  As I watched the film I googled the names of individuals interviewed whose comments resonated with me.  In this way I discovered what I had been looking for- books, articles, and stories from a place of love and acceptance.  I read Loud Hands, a book written by Autistic adults from all across the spectrum.  I read Not Even Wrong and Unstrange Minds, written by two of the individuals interviewed in Loving Lampposts.  I read Stanley Greenspan’s Engaging Autism, and I discovered the Autism Discussion Page.  I read Ido in Autismland, I found blogs like Diary of a Mom and Emma’s Hope Book.  And of course, I read several of Temple Grandin’s books, which led me to Tito Rajarshi Mukhopadhyay’s poetry and then his book, How Can I Talk If My Lips Don’t Move?.

I can’t express how valuable it was to find these books.  I was given incredible insight into how my son’s mind works and what might be good ways to support him.  I didn’t agree with every single thing I read, but I appreciated each perspective, and they all helped me find my own place in the confusing and often hostile intersection of Autism and parenting.  And when I say hostile, I am referring to the “Autism wars” you may find yourself inadvertently sucked into when you have an internet connection and an opinion on anything Autism.  

So if you’re out there, a confused, worried, hopeful mom or dad with a newly diagnosed Autistic kiddo, here’s MY reading list- web links and all- happy reading!

Oh, and before you start reading, check out Loving Lampposts:  http://amzn.com/B004UEQABK

Note: these are not in any particular order, so browse and choose any reading order that appeals to you.

Loud Hands: Autistic People, Speaking by Julia Bascom et al http://amzn.com/1938800028

The Autism Discussion Page by Bill Nason:

ADP Facebook page-

https://www.facebook.com/autismdiscussionpage

ADP Books-

http://amzn.com/B00MU028TE

http://amzn.com/B00MVR6B5I

Neurotribes by Steve Silberman http://amzn.com/B00L9AY254

Not Even Wrong by Paul Collins http://amzn.com/B002STNBYS

Unstrange Minds by Roy Richard Grinker http://amzn.com/B0097DHTIM

How Can I Talk If My Lips Don’t Move? by Tito Tito Rajarshi Mukhopadhyay http://amzn.com/B00CKXAAKK

Ido In Autismland by Ido Kedar http://amzn.com/B00AOUN01W

The Autistic Brain by Temple Grandin http://amzn.com/B009JWCR56

Diary of a Mom blog: http://adiaryofamom.com

Emma’s Hope Book blog: http://emmashopebook.com

Respectfully Connected blog: http://www.respectfullyconnected.com

In The Tunnels

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Image by Tom Blackwell* 

I have always been claustrophobic, for as far back as I can remember.  When I was a child I was not able to reason through it as an adult can, so it was particularly painful back then.  Something as simple as being in a room with a closed door was terrifying.  We moved around a lot, and the first thing I did whenever I got my room at a new house was to plan out my escape route in the event that I got stuck in the room.  Planning how I would get out– through the window, from the window to the roof to my parent’s balcony, from there down the drainpipe to the ground– was a ritual that allowed me to feel safe in my own room.

We lived in Europe growing up.  One year, when I was 11 years old, my class took a trip to visit the old underground mines in a nearby mountain where, hundreds of years ago, miners had constructed a maze of tunnels beneath the earth.  We had to take an elevator down to the start of the tunnels, and it felt like we were going miles underground.  My fear was squeezing me tight before we even got off the elevator.  When we arrived, our teachers explained that much of the tunnel we were going to go through was too small for an adult to fit through.  The miners of so long ago had much smaller bodies than today’s adults.  We were told to follow the tunnel through to the end where the teachers would be waiting for us.  In America I don’t think this kind of field trip could ever happen, but in this particular country** it was no big deal.  I had no choice but to follow my classmates into the tunnel.  I’ve been through a lot of things in my life, but I don’t think I have ever been as scared before or since that trip through the mines.  The tunnels were so tight that in places we had to crawl and could not stand upright.  I cried silently and prayed over and over to myself, promising God anything, anything, to make it end.  Somehow it finally did.  I don’t remember much after that.  Mostly I remember the crushing fear and anxiety of being forced to face my claustrophobia in the worst way.

I think that a lot of people don’t understand what it really means to face crippling anxiety.  Someone asked me recently what it feels like for my young Autistic son.  I see them perplexed by his anxiety to things that seem harmless to them.  I couldn’t think of a good answer at the time; I’m not even sure what I said.  But on my way home I remembered the mines.  I think it must be like that.  My son is the bravest person I know.  He has to enter those tunnels every single day.  He is not able to tell me yet exactly what it feels like for him, but I think of it like this now, because I know what it is like to be afraid of something other people don’t understand.

*image by TJBlackwell see more of his beautiful photographs here

**I’ve chosen not to name the country where I grew up to protect my privacy.

Diagnosis

2014August-18
R, shortly after his diagnosis at 18 months*

The psychologist has laid out an impressive array of toys across the office space: on a child sized table, on the floor, and more toys in a bin.  I smile awkwardly, not wanting to disappoint her efforts, but knowing that R won’t care for any of them.  R doesn’t play with toys.  She smiles warmly at him and gets down on his level to say hello.  He ignores her and the toys, and begins climbing the two chairs pulled up to her desk.  “He loves to climb,” I say.  She tells me we can finish some of the parent report questions she has while R settles in, and then she will start the assessment with him.  She asks me a series of questions- does he recognize himself in a mirror?  Can he stack 3 blocks?  Does he understand the word “no”?  Can he follow a one-step direction?  No, I answer, no, again and again and again.  

She sits on the floor next to R, who is clutching a pen he found on her desk and mouthing it.  She tries to interest him in several toys but he ignores all her attempts.  She decides to try using the pen, since it is the only thing he seems interested in.  She take the pen from him and he bursts into tears.  “Look R, can you find the pen?”  She hides it under a cloth.  Still crying he throws the cloth off and grabs the pen back, then settles down.  She tries again, this time hiding it in a clear box that you must reach into from the side.  R doesn’t know what to do and cries until we give him the pen back.  She brings him blocks, showing him to stack one on top of another.  He wanders away.  She shows him a small mirror, which he turns over in his hand and mouths.  She brings out an infant shape puzzle consisting of two knobbed shapes and the board where they fit.  He puts the knob in his mouth but will not engage the puzzle beyond that.  And on it goes.  She brings out a wind up toy, she blows up a balloon, but he ignores all of this.  Instead he mouths his pen and wanders the room.  More than 2 hours pass in this way.  Finally she brings out bubbles and begins blowing them.  This is something that truly interests him.  He steps closer to her, eyes locked on the bubbles as they float toward him.  He is fascinated, watching wide-eyed, though he doesn’t try to reach out and touch the bubbles.  She stops, pauses, and waits expectantly.  Later she explains that she wanted to see if he would indicate a request for more in some way- whether by eye gaze, vocalization, or gesture.  He waits too, and when he realizes she isn’t blowing any more bubbles, he bursts into tears with that heart-wrenching, hurt-feelings cry.  I scoop him up and whisper soothing things in his ear, rub his back.  The psychologist tells me she has enough, we can finish.  She tells us to sit and relax while she writes a few things up.  My husband and I glance at each other, silently wondering if we are going to have the result right now.  R is restless so my husband begins tickling him and blowing raspberries on his belly.  He laughs hysterically, an enormous grin stretching his little mouth, adorable dimples popping into view.  Relief settles over me, this is my boy, this is exactly him, this is right.  Forget the puzzles and blocks, the words and gestures.  Him getting tickled, him laughing, this is my son.  The psychologist comes over to sit with us, hands folded in her lap.  She tells us our son has Autism.  She goes over the assessments, explaining what she had been doing, what each part was looking for.  Though we had been sure when we walked into the office that morning that this would be the result, it still seems unreal somehow.  We ask inarticulate questions.  We don’t know exactly what we are trying to ask.  I think we just want to know if he will be okay.  We ask if it’s mild, moderate, severe?  She hesitates then says “Moderate to severe right now, but that can change.  He is very young.”  We leave with a diagnosis letter, the promise of a full report in the mail, and the instructions to start therapies and return in a year to check his progress.  

*Photo by Saeideh Golji

Early months

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He wiggles his fingers in front of his eyes while rotating his wrist back and forth.  He’s been doing it since he was 6 weeks old, perhaps younger.  We love that it is so “him;” one of the many little things he does that our other children never did, that we never see our friends’ babies doing.  He’s so unique, we say.  He’s our quirky guy.  He is 6 months old.

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He deliberately bumps his forehead against the wall then rubs it down the wall.  He does this over and over.  It makes loud buh-bump-buh-bump-buh-bump noises.  At first I am alarmed.  “What are you doing, buddy?  Be gentle!”  He doesn’t react to my voice at all.  I wonder again if he might be deaf.  We never had the newborn hearing screening done.  I copy him, bumping my head against the wall pretty hard, then dragging it down.  It doesn’t hurt, so I figure it must be ok for him to do.  He continues and it strikes me how funny he looks doing it.  I giggle and pull out my cell phone to record him.  I take a few minutes of video, giggling at his quirky antics.  He is 9 months old.

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He holds a tinker toy rod in his fist before accidentally dropping it.  He goes to pick it up again but becomes distracted by the sight of his own hand.  He changes course mid reach, slowly bringing his hand in front of his face and watching his fingers move.  He moves his hand up beside his temple and opens and closes his hand over and over while he watches in his peripheral vision.  The nurse calls our name.  In the exam room the doctor begins describing the developmental milestones expected for this age.  I tune her out, having done this with 2 other kids before and expecting, as always, that it is a bunch of “yes, yes, yes”s I need to confirm so we can get to the good part- the physical exam and seeing his growth chart.  At first I say “yes” several times before my brain realizes that there have been at least 3 that I automatically said “yes” to that were actually “no’s”.  I don’t tell the doctor, but flustered, I start paying more attention, and say no to over half of the remaining questions.  I ask the doctor if that is still normal, and she assures me that every child develops at their own rate.  I put it out of my head.  He is 12 months old.

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“Here’s what we will do,” I say. “You take him in the other room and I will start his video at the lowest volume.  I’ll gradually add volume.  You watch to see if he notices the sound.”

“Okay,” my husband agrees.  “Let’s do it.”  We do.  As soon as I increase the volume to a level that would be audible from outside the room, R runs in, bee lining for the computer where his video plays, a huge smile on his face.  

“He’s not deaf then,” I announce uncertainly.  I wonder why he doesn’t respond to his name or look at us when we are loudly trying to get his attention.  I google “autism,” but quickly close the page.  My son couldn’t have Autism.  Stuff like that happens to other people.  We are just your average boring family.  I tell myself it is probably a 3rd child thing.  He is 15 months old.  

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I can’t ignore that something is different any longer.  I look at R, who is putting the tinker toy rod piece through the circle piece over and over.  This is his only play.  He does not play with any toys at all, except these two tinker toy pieces, which he must always be holding, and with which he performs the same action on repeat.  He doesn’t have any words.  He doesn’t point or follow a point.  He doesn’t wave or clap.  He has stopped making any eye contact at all.  He doesn’t understand anything we say to him, and he doesn’t respond to vigorous attempts to get his attention.  He doesn’t seek us out for help or play.  If he wants something he stares fixedly at it, never looking from the item to us to let us know what he wants.  If he can’t get something he wants he just cries, never trying to get our help first.  He does not bring us things or show us things.  Unlike our friends with a child the same age, we have not had to baby-proof at all.  R doesn’t get into anything.  He has no interest in opening cabinets or drawers, taking or dumping things, exploring toys or objects.  He does none of that.  He will sit and trace the bolts on the cabinet with his finger, but never open the cabinet.  Instead of playing he does things like scratch textures- the upholstery, blankets, sheets, the rug.  He still wiggles his fingers in front of his eyes all the time, and does several other strange hand movements.  He is very fascinated by his hands.  Autism, a voice whispers in my mind.  No, I think, it can’t be, because despite everything else he is very attached to me, very sweet and cuddly, loves to be held and hugged by me.  He giggles and laughs all the time.  I’ve heard kids with Autism are detached and aloof, that they don’t like to be touched (this, I will later learn, is a common myth).  Still, I begin googling in earnest.  I come across the M-CHAT, an Autism screening for young toddlers between 16 and 30 months of age.  He scores a 17 out of 20, 20 being the highest possible risk score.  The webpage advises that he is at “very high risk” and should be assessed immediately.  I call his doctor.  He is 17 months old.   

I want him.

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After a tough outing the other day, I was thinking, as we drove home, how much I wish there was a magic pill to cure my son’s anxiety.  I was nearly salivating at the thought.  I would cure his anxiety in a heartbeat.  But I have always been in the camp of parents who don’t want a “cure” for his Autism.  And before you accuse me of saying so because I must have a “mild” kiddo I’ll disclose that R is very impacted by his Autism.  He carries a level 3 diagnosis.  He is not “mild” on the spectrum.  He is less abled than the large majority of his same age Autistic peers.

But here’s the thing:  Autism isn’t just the sum of his challenges.  Are there things I wish I could change for him?  Things I would “cure” for him?  Absolutely.  Would I be willing to re-write his entire neurology, personality and all, to achieve that end?  No f’ing way!  Autism is so much more than just the sum of his challenges.  I see Autism when he smiles and giggles, reaching out to touch something my eyes have missed.   I see it when he moves his body in joyful, wondrous rhythms.  It’s in the fact that he has, in his 3 short years, never tried to deceive anyone, never once acted with malicious intent, no matter how angry or frustrated he might be.  It’s how he is the happiest, most cheerful child I’ve ever met despite the hardships he faces.  I look at his beautiful smile, his whole body bursting with joie de vivre, and I think: this is Autism.  This is as much Autism as any of his challenges.  This is who he is.  I don’t want a different child.  I want him.

Beginnings

Maybe I’m reading too much into it, but it seems all of my children’s births have been demonstrative of the personalities they went on to reveal.

My oldest came on time, but did not come easily.  Labor started just a day past my due date, but was 36 hours long, a good length of that stalled at 8cm, and fraught with periods of dangerous drops in heart rate.  Near the end he did not recover from one such drop in HR, and we were rushed to the OR for an emergency C-section.  Before the doctor started cutting, his HR stabilized.  We all waited silently to see if it would stay that way, and finally the doctor declared that I could try pushing, since I was 10cm by then.  They took me back to the birthing room and I pushed for the next two hours.  Finally, finally, my little boy emerged, head bulbous and screaming with indignation.  He was the most beautiful creature I had ever laid eyes on.

Like his birth, my oldest son has always been a worried, nervous child.  He drags his feet, heels dug in, at difficult tasks.  He is concerned about new things and what is happening next.  But in the end he stays the distance.  He’s thoughtful, sensitive, and loyal.

My daughter’s birth was a whirlwind.  Like her older brother, she too was right on time.  Prodromal labor started at 11pm the night of her due date.  Active labor started at 1am, and she was in my arms by 2.  We nearly had her in the street, and as it was, we only made it into the exam room of our birthing center, missing the gorgeous birthing suite with jacuzzi tub altogether.  She arrived ten minutes after the sleepy, harried midwife fumbled to unlock the doors in her nightgown.  My daughter is an unapologetically loud, passionate, and fearless child.  She eagerly dives into to new situations with 110% energy every time, just as she did with her birth.

My youngest too had a birth befitting his character.  It feels like some aspects of his Autism were present from in utero.  He has a very hard time with change, and a great deal of fear and anxiety in new environments.  So in retrospect it should be no surprise that he was determined not to exit the womb.  Unlike my other two who came right around their due dates, R was 11 days late, arriving at 41 weeks and 4 days.  I think he may have stayed in longer if I hadn’t tried every “natural” induction method google had to offer in the days before his birth.  We had a homebirth with midwives, so medication was not on the table.  My labor with him was extremely painful, unlike my unmedicated birth with my daughter, and the unmedicated portion of my birth with my oldest.  Having given birth twice already I was not anticipating that.  He had a very hard time descending into the birth canal until finally my midwife reached in and adjusted his position then used her hand to push my cervix aside while instructing me to push.  With her help he finally slipped into the birth canal.  When he came out he did not cry at first, though he was breathing just fine.  He was a very calm, quiet, and easy baby.  He was born in my bed and stayed there with me for several days.  When I was finally up for moving about more, we noticed that he cried whenever we took him off of our bed, but was calm and content as long as he was on that bed.  At that time his whole world was that bed, and he became upset whenever he was asked to explore beyond it.  Slowly he grew to expand his world to include the rest of the room, and eventually the rest of the house.  As he got older, we could not take him new places without having him snuggled into my breast in a carrier.  If I tried to remove him from the carrier he would wail.  We would go to fun places, like mommy & me playgroups, play spaces, and playgrounds.  I would see all the other babies his age crawling away from their mothers, interested in exploring the objects and environment around them.  R just wailed and wailed if I tried to remove him from his place against my chest in the carrier.  But as long as we were home or in a very familiar environment he was the happiest, easiest baby.