The Short Bus Diaries » Confessions About Life With an Autistic Son

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On Not Being a Very Good Mother

So I feel like [insert bad word] today about my parenting skills.  I’m questioning the wisdom of posting this plainly on the Interwebs, where strangers can judge me.  But I’m committing more fully to writing these days, as I’m finding it effective in helping me figure out just who I am these days.

Yesterday, my son dunked his head in the toilet.  For at least the fourth time.

We had just come back in from a Sunday afternoon visit to a playground with lots of sensory-friendly equipment (for the purposes of helping him get the crazies out and settle into a nice easy evening), and had just about wrapped up the hand-washing routine.  I was feeling pretty satisfied with my ability to hold it together towards the end of the weekend (the two days straight with my son at the end/beginning of each week are very challenging for me), when I watched him happily Stick. His. Head. In. The. Toilet.

I’m sure that – for him – it’s just another “Sensory Experience”, something wet and cold that feels different than the other hours of the day that most he spends without his head enveloped by cold, fecal-matter-infested water.  He probably makes absolutely zero logical connection between the poop that leaves his body, the hands that we wash after said pooping event, and very different types of liquids and solids that we actually bring into contact with our faces.  The concept of a “taboo” – much less the idea of bacteria and germs – means absolutely nothing to him.  I can post-event quarterback the hell out of this unfortunate scene, of course.

But in the moment, I totally lost it.  I yelled at him and shoved him quickly into the shower and screamed – for the next five minutes – “NO HEAD IN THE POTTY!  NO HEAD IN THE POTTY!  NO HEAD IN THE POTTY!”.  I tried to get him to repeat it, but he obviously couldn’t get the words out when he was feeling anxious and overwhelmed (nothing like a screeching, hysterical mother in your face to freak you out).  While drying him off and continuing my mantra, I turned around to see my two year old daughter crying and scared.  And that’s when I realized what a terrible mother I had become.

I am ashamed.

When I read these tweets, blog posts and books about how autism has allowed parents to become better people, I just can’t relate.  Part of me wonders if these people are just kidding themselves and the world, rationalizing for the sake of giving greater meaning to their lives and minimizing the arbitrary and cruel randomness of an autism life sentence for their children and their families. Maybe they’re even flat-out lying.

And then part of me wonders whether I am simply not self-actualized enough to accept my son as he is, to make peace with autism, and to step back and observe the hidden facets of life that autism has helped reveal.  Ecch.  Just typing that sentence feels icky to me, like I’m buying into the idea that autism could somehow be this pair of glasses that will bring the world into focus, if only I would just relent and put them on.

Either I’m not “there” yet, or I never will be.  Come back to me in 15-20 years.  Right now, I just feel like a terrible mother.  My poor son didn’t choose this life.  He didn’t choose to be born, choose me for a mom, or choose to be saddled with autism.  And yet, I often fail to see my little boy for what he is: a human being, rather than a problem that must be solved.  I honestly wish I could become a better mother, one who is open to receiving all those lessons in patience, selflessness and lemonade-making that I feel as if so many other autism moms out there have mastered.

However, what if the saintly autism mommies are not in the majority?  What if the vast majority of us clumsily battle our way through another day, grateful for the nights when we can be individuals again and not just chaos managers and butt wipers?  What if there are more parents out there that have wondered if another life could have been possible?

I sure wish they would speak up.  Because I’m feeling like kind of a loser over here.  More importantly, I’m feeling like my son might benefit from having a different mom.

The Human Squeeze Machine

Yeah.  So I just squeezed my son to sleep.

Well, not literally.  He just needed to calm down.

Hubby gave up trying to coax my son to sleep after lying in bed with him for half an hour and failing miserably.  (My son is at that nap/no nap transition at the age of four, but we desperately cling to our autism-free hour in the middle of the day.  Plus, he wakes up around 5:30 in the morning and falls sleep sometimes as late as 10:30pm, so a mid-day naps seems like something the doctor -in addition to his parents – ordered).

So it was my turn next, as I tend to have better luck with the whole You. Shall. Sleep.  Thing.  It takes a certain level of commitment and boredom to lie next to him and not fall asleep myself (where would I be without the Facebook app on my cell phone?).  Before I peeled myself off the couch in our living room to go upstairs and sleepify him, I could hear him squealing (his latest verbal stim) and jumping around madly on the trampoline in his room.  In the hours leading up to naptime, he had been jumping in and out of both of our in-home therapy swings and chewing obsessively on clothing, so it was pretty clear to me that he needed some major sensory input in order to calm down and sleep.  And this is exactly what I did.

I basically pulled a wrestling move on him and squeezed his arms against his body and his legs against the bed (I played Badminton in high school, so, ya know, I’m athletic).  In fact, this whole “position” was pretty exhausting for me – try keeping every muscle in your arms and legs tense for 30 minutes while trying to create an aura of calm (contradictory but a strangely appropriate version of cuddling where my son is concerned).  And despite how this all sounds, my son didn’t mind it.  Not one bit.  If he did, he would have struggled against me and screamed.  But he smiled and allowed me to continue, while he simply calmed the hell down.  Just like the cows in the HBO Temple Grandin movie.

The ongoing movie-in-my-head panned down on me to question whether pinning one’s son down on a bed  for 30 minutes straight bordered on child abuse.  I contemplated giving up and just setting him free to stim about while I edited photos during my Mommy downtime.  But the fact is that he loved it the full body squeeze.  He needed it.  He stopped squealing, flapping, and humming.  He just chilled out, transforming his face from crazed to something approaching peaceful and sleepy, as if I had given him a shot of tranquilizer.

When I could tell that it was working, I went back to trusting my instincts and stopped worrying about whether this approached abuse.  I gradually moved my hands and legs off of him, kissed him softly, and allowed him to fall asleep in a non-wrestlers hold.

Judge ye not, until you too realize the power of the squeeze.

 

Photojournalism Project – What Autism Looks Like in My Home

A lot of photographers participate in 365/52 projects, where somebody establishes a theme, and each participant then hunts around for images in their lives that illustrate what that theme means to them. I briefly thought about signing up for one of these projects.  And then I thought about how crazy my life is, and how I did not need the added pressure of identifying how themes manifest themselves in the course of me doing laundry or making dinner for my kids.

However…

I did want to take on some sort of personal project this year.  I spend the vast majority of my photography time creating images for clients.  These images are all carefully thought out and fully retouched in such a way that my clients can proudly display them in large sizes on their walls.  I love doing that.  I love creating beautiful art for my clients’ walls.  But I needed to both practice my photojournalism skills (very different from my usual style) and turn the camera around to focus on my own life.  And to do so and keep this project moving, I would not spend much time on perfection.  What I seek is accuracy and honesty (kind of like how I speak, if you’ve ever met me in person).

The more I thought about it, I realized that I am already a part of a group. As some of you may know, I have a part of my life that is not so clean, perfect, or beautiful.  It begins with “A” and ends with “utism”.   It’s a big and growing club.  And we autism parents share many, many things in common, although each of our children are different in a way that only the snowflake metaphor could aptly convey.  In fact, when we get together, it’s a bunch of head nodding and sympathetic “I’ve been through that same IEP meeting” verbal high-fives.  It’s a club that no one wants to be a member of, but one we wish everybody else could be a member of for only one day.  (I’m pretty sure it’s the same for parents of any type of special needs child.)  When we come home from birthday parties held for “typical” children, and from stressful outings to public places where we endure the looks of strangers who don’t understand why our children simply don’t “behave”, I think we all may wonder what it is that non-club members actually know about our lives.

A few years ago, a boss at my old job – pre-photography – stated that “it’s basically a learning disability, isn’t it?”.  This phrase has really stuck with me over time, as my own understanding of autism has grown and the skeleton of my new post-autism life starts to calcify.  No.  It.  Isn’t.  However, I can’t say that I myself paused much to think about autism and what it might actually mean for a child and family, prior to The Diagnosis in my own life. Why would I?  Why would you?  You just can’t know until you’ve experienced it first-hand.

And as my crazy busy season wrapped up in my photography business, I began to settle upon the idea of a photojournalism project, the goal of which will be to paint a photographic picture of what autism actually looks like.  My main goal is to somehow portray how autism plays out in the banalities of family life, and not to create a Photoshopped, dramatic portrait of heroic individuals who have somehow overcome autism, or who have managed to turn their savant skill into something that made them rich, fabulous, or at least into an HBO movie.

So – partly as an exercise in self-help and partly as an education project – I have begin documenting the everyday lives of families living with autism.  And to kick it off, let’s start with my own life.  I thought about Instagramming this stuff or running it through Photoshop to achieve some glossy, vintage finishes.  But the fact is, my life isn’t glossy or Photoshopped (no one’s is, actually).  So you’ll see that not a single one of these images has been retouched or “popped” in Photoshop.  They are what they are.  : )

Meet my son.  He likes to twist stuff.  A lot.  He also likes to bite stuff (non-human) a lot.  And when he doesn’t have one of his trusty yellow cords, he will find the nearest cord possible, even if it’s connected to a humidifier or it takes the form of a wire hanger.  And when he can’t find one of his rubber “chewies” to gnaw on, his shirt will do.  And when he needs to sooth himself, he swings.  We have two swings in our house – one smack in the middle of our foyer/living room, and the other in his bedroom.  In fact, if you visit our house, you’ll find all sorts of sensory “equipment” lying around.  Autistic kids often have various sensory needs – they either seek input or avoid it, depending on how their brain is wired.

autism, autistic son, home based aba, verbal behavior therapy, applied behavior analysis, autism, stimming, sensory integration

I have no idea how a single cord can be fascinating enough to pass the day twisting it.  I wish I could see what my son sees when he winds these cords.  Sometimes I think that he twists the cords simply because he doesn’t know what else to do with himself.  For a while, we decided to lift up from the floor all of the free-standing lamps, purses, belts, and toys with attached strings, believing that we could somehow stop him from twisting, twisting, twisting if he couldn’t reach these.  Eventually, we gave up.  You would not believe how many things in this world can be twisted.  As time went by, my son isolated his twisting to just a few selected objects.  I suppose that this is progress, or at least, less annoying. : )

We have created a home-based therapy program for our son, just like a lot of families out there.  Our particular program is based on the “Verbal Behavior” model, created by B.F. Skinner.  This means that we have two-three therapists in our home on a weekly basis “training” our son to use words to request what he wants, generalize similar objects into a single category (rather than seeing them as specific, completely different things that have no relationship to each other ), learn to understand the concept of “no” without freaking out, and even how to eat more than four foods and pull his pants up after he goes to the bathroom.

In order to get so much as a tickle, my son has to use sign language or verbally request it.

While it’s highly repetitive and downright boring from an outsider’s perspective, my son actually enjoys his therapy sessions and loves his therapists.  He gets to jump, crash, get hugs, get rewarded with tons of junk food if he asks for something correctly, and gets – above all – entertainment.  Because, you see, my son doesn’t know how to play.  He doesn’t know how to entertain himself.  He doesn’t get anything out of TV, books or toys.  And this program helps him figure out how to “use” toys and do stuff besides….twist….cords.

Our therapists break Max’s behavior, requests, and level of independence vis-a-vis designated tasks into measurable data.  We have a big fat binder with lots of paper in it, full of lots of abbreviations that I do not fully understand.  Above is a photo of my husband breaking down the action of my son pulling on his own pants into a segmented “task analysis”.  Honestly, we just do our best to remember to perform all of these things correctly during the course of our day, when our therapists aren’t around.  That’s probably the hardest part – remembering to incorporate all of this behavioral science and structured communication methodology into our days at the same time as we need to cook dinner, change my daughter’s diaper, and get our kids fed/ready for bed/out the door.  It ain’t easy.


Now for a visit to our Occupational Therapist.  Don’t know what they do?  Well, to tell you the truth, neither do I.  From my perspective, though, it looks like a lot of fun.  It’s a room full of soft things to crash into, as well as swings and a whole bunch of awesome full-body toys that you are encouraged to touch, squeeze and jump on.  I can’t think of a better way to spend an hour.  Obviously, my son loves it.

Below, you’ll see a visual example of how autistic kids interact with each other.  Right before I snapped this photo, the two therapists tried to introduce the boys to each other and have them greet one another.  It was like watching two north-pointing magnets try to connect.  No matter how much you push the two magnets together, they will repel each other and look away.

That facial expression you see down below?  The spacey one?  Yeah.  That’s the million yard Autism Stare.  I’ve spotted it on plenty of autistic kids.  It’s that faraway look that pretty much visually sums up the canyon of space between autistic people and the rest of us “neurotypicals”.  What they see, what they think, what they feel?  No idea.  I wonder if it’s fun “in there”…

Here’s another “favorite” look of my son’s.  The “Sensory Overload / Happy / Hand Flap” face.  To be honest, it’s a toss-up whether this look or his inexplicable giggle outbursts are more unsettling to me.  These are the things that make my son look “different” when we’re out in public.  If it wasn’t for these, we might be able to “pass”.  I know that some autism advocates are loud and proud about their “stimming”, but oh, what I wouldn’t give for a completely normal public outing, where I didn’t have to explain to people that my son is autistic and that is why he grabbed that french fry off your plate.  Maybe one day, after enough years of therapy, my dream will come true.

And for anyone who saw the Temple Grandin movie on HBO (she’s the face of autism these days), here is the modern-day occupational therapy version of her notorious “Squeeze Machine”.  Unsurprisingly, my son loves it.  It gives him the full-body input that makes him feel regulated and aware of where his body is in relation to gravity, walls, the ground, you name it.

And to close up this little Autism 101 tour, let’s go back to my home and check out The Tools.

Here’s a quickly put together collection of various sensory tools we’ve bought over the past year.  There’s a compression vest (to squeeze around my son’s torso), a weighted vest (to give him a greater gravitational pull towards the ground), leg weights (to give him input and keep him from repetitively running up and down the length of our house), various twisty implements, and of course, an array of chewies, one of which vibrates (oral input).  At this point, my son is just down to his trusty cord.  But they do use some of these in school to encourage him to sit in order to learn.

Next up?  Various table-top learning activities designed for kids like my son, who need help grouping similar concepts and objects into categories, labeling colors and actions, and just plain learning to speak.

Last up in this gallery of my life?  Medication (natural and otherwise). A pill crusher.  An oral syringe.  While there is no cure for autism, some parents have managed to reduce certain problem behaviors (like OCD and aggression) with various anti-depressants.  Our current main concern for our son is sleep.  And the drugs you see below?  They’re not working.  At all.  When he decides that he needs to get whatever it is that he wants in that cabinet?  Absolutely nothing can shift his mind onto some other topic.  And when he wakes up at 3:30am, he often stays that way. And then doesn’t take a nap that afternoon.  And then gets more “autistic” as the day goes by.  And then stays up til 11pm the following night talking and giggling to himself.  Little known fact: autistic children often can’t fall asleep or stay asleep.  Again, it has to be something going on in their heads that the rest of us cannot fathom.  It’s as if my son cannot turn his mind off, even if he wanted to.  But maybe he doesn’t want to.  Maybe he likes what’s going on up there.  I’m not sure that I’ll ever know.

 

The Autism Photo Project: Capturing Owen | - February 23, 2012 - 5:07 pm

[…] project, I am photographing other families who are also living with autism.  As I said in my post about my own son, our snowflake children are so very different from one another, and yet I’m finding that the […]

Unpredictability is the Worst Part

So I haven’t written much on here lately.  The fact is, I’ve been incredibly depressed.  Often angry.  Sometimes in a rage that only somebody else with an autistic child could understand.  And then back to being depressed.

I’ve had nothing particularly incisive, witty or mind-blowing to write here.  I don’t expect to always have unique things to write on this blog, but pure self-wallowing and darkness is something I’d like to keep between my own ears, or at least between the walls of my house.  But not out here…in public.

I chose to publish today for two reasons.  The first is that I am slowly pulling myself out of what probably won’t be the last tunnel of darkness, thanks to some anti-depressants, the welcome recognition of my best friend and family that our son IS in fact out of control sometimes and that I actually DO have to yell at him to be heard, and the dull healing that occurs over time.  I may sink back into again; I make no promises.

Secondly, I’m writing today because I’ve achieved clarity on one point: autism is different than Down Syndrome, fatal childhood diseases, and mental retardation (and yes, I actually did look up “politically correct for mental retardation” before posting this, because I fear the ire of anonymous Internet readers).  I’m not saying that it’s “better” or “worse” than any of those terrible diagnoses.  It’s just different.

I was reading Susan Senator’s The Autism Mom’s Survival Guide, in a burst of pro-active self-healing, and determined that I was indeed not crazy for thinking this.  Apparently parents of autistic children are TWICE as likely to experience depression and mental illness, compared to the general population. This is a pretty shocking number.  Good to know that I’m not alone, I guess.

And, adding in my own explanation for this (because I’m nowhere near the end of the book), I believe this is because we autism parents are never standing on solid ground.  We’re never sure if our kids are stuck at a particular developmental stage, or if they’ll “snap out of it” / move on / learn / get trained to the point where they don’t make random noises in public or take their pants off and hump a blanket at your parents’ house.  There are SO MANY stories of “recovered” kids with autism, or successfully integrated people with autism who become that guy in your building who’s a bit odd, but doesn’t hurt anybody.  To add insult to anxiety, autism parents also face a continuous stream of miracle cures and therapies, only to be told that it did wonders for one child, and not much for another.  And then there’s my own kid, who completed potty training in advance of his autistic and neurotypical peers, and yet can’t sit down and play with a single toy.

My Son, This Fall, Clutching His Ever-Present Piece of String

 

I read a New York Times piece this morning, titled Notes from a Dragon Mom, that made me feel like both a whiny bitch and a mom who could relate to the author’s plight.  Here’s a mother who knows her poor son is doomed to die and that her only job is to love him and not prepare for a future.  Reading this made me realize that, while I would never wish myself to be in her tragic shoes, I still recognize that this is a mom whose life is somehow more stable than mine.  God, how awful am I?

The fact is, we’re never quite sure what we’re in for – we parents of autistic children.  If my son had some disability that somehow fixed him at one particular point on the continuum of life, then at least I would know where we stood as a family.  I would know that there is/isn’t a cure, that he had five years to live, that his disability was significant enough that the government would actually step in and find him a home/support if/when we die.  I’d know that he would never lead a normal life, never talk, never get a job or move out of our home to a life of independence.  And there would be some peace in the knowing.

Am I a terrible person for saying that parents whose kids are in worse positions somehow have it better?  Maybe.  And in fact, I’m not saying that their lives are more pleasant than mine.  I don’t have to negotiate with wheelchairs, breathing machines, feeding tubes, etc.  I don’t have to go to sleep at night praying that my child will wake up in the morning.  And I am GRATEFUL for this and OH SO SORRY for those parents that must experience this.  But at least they know what they’re in for.  At least their days are relatively similar and their futures predictable.

I guess what I’m saying is that I now understand why my feelings about my son and our future are constantly gathering speed and then slowing down, swirling around and then settling down peacefully.  Because I cannot get comfortable with any particular image of my son over time.  Whether he will learn to speak, read and control his urges enough to live independently is anybody’s guess, so in the meantime, every day begins and ends with a huge question mark.  And this is frustrating in a way that parents of a typical child will never understand.  Yes, I know that their children’s futures are unpredictable as well.  Their children may end up pregnant in high school, drug addicts, drop-outs, criminals, etc.  But it is SO NOT the same.

I am trying SO HARD to love the child I have and not the child that I want (a phrase autism parents must hear only a bit less than “if you’ve met one child with autism, you’ve met one child with autism”).  But the child I have may not be be the child I end up with.  Or maybe he will be exactly where he is today when he’s 30.  The Big Tease for autism parents is the chance that the child you want is actually possible.  And it is that tantalizing prospect that makes each day in the present so very, very difficult for me.

Top 5 List of Benefits to Having an Autistic Son {Washington DC Autism Mom Parent}

I haven’t written on this blog in a while because I try not to go there.  But lately I’ve been stuck there, so I might as well try and explore what there is for me lately.  Maybe it’ll help shake me out of my malaise.  Maybe.

So here’s a list I expect to add to as time goes by….

The Top Five List of Benefits to Having an Autistic Son

1.  Being able to swear in front of your child longer than other parents.  It is only the realization that my neurotypical (oh hell – NORMAL) 21 month old daughter is starting to scream “GO” at the stopped cars in front of me, when we’re sitting in traffic, that I realize that it is about time that I stopped dropping the F Bomb in front of my children.  Yes, I’ve been a parent for almost four years. : )

2.  Not having to wonder how I’ll address the toy gun issue.  Pre-parenthood and Pre-Diagnosis, I wondered how I would explain to my son and husband what I would not be buying any toy guns, since I didn’t think violence equated to a good, imaginative time.  But since my son doesn’t play with anything (and I mean absolutely ANYTHING), there are no requests for any toys in particular, let alone violent TV shows or video games.  Hallelujah. Nobody has to hear my liberal feminist ranting and everybody is better off for it.

3.  Not having to feel obligated to contribute money to charity.  Thanks to the ridiculous therapy bills and insurance coverage in this country, we have no spare income for anything other than pizza once a week and a few new items of clothing every so often. I feel a burden lifted from my shoulders when it comes to owing my change to the guy on the street corner or a dollar to Jerry’s Kids at the grocery store. This is honestly a pleasant discovery, as I used to constantly wring my hands over who deserved more of my middle-class-aware-of-my-privileges-and-must-pay-it-back money.

4.  Actually realizing what it is like to walk in the shoes of people and parents that I never thought much about before.  Pre-diagnosis, I could walk by disabled people or try to politely ignore families who were struggling with a “different” child and I would feel a fleeting sense of sympathy and an even more ephemeral sense of gratitude that I had escaped those troubles in my own life.  Now, with only a taste of what true struggle must be (i.e. parents of children with severe health/mobility/emotional problems), I want to give each of them a hug and an apology for not spending enough time thinking about them. I’m pretty sure they don’t want my sympathy. But I’m certain that they (like I) would truly appreciate it if everybody could just remember that they/we are out there, struggling.

5.  Facing the daily burden of taking a long hard look at myself and trying to self-correct.  When life was easy and my young son had a whole normal future ahead of him, I might have patted myself on the back for being a good mom and wife and law-abiding citizen during a 15 minute shower in the morning once a week.  I might have had a conversation with myself following a minor argument with my husband about how I should probably nag him less or let him go have a drink with the boys a bit more often.  But I now perform a rigorous daily examination of what kind of mother I am, what kind of mother I need to be, how I choose to act towards my son, what my attitude towards our future should be, how I should define success, goals, satisfaction, and most importantly what I should and should not expect and demand from my autistic son. This is a painful exercise, but I’d like to think that it is shaping me into a better human who has been forced to actively define things in life that only gradually take shape for many people.

And because every post is better with an image, here’s one of my son sleeping, the time of day when it’s easiest to love him, and also when I tend to judge myself the most harshly.

M o r e   i n f o