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

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What I Imagine He Sounds Like

Last night I dreamed that my son could speak. The details are fuzzy. But I do remember that it was not some miraculous binary shift; he did not start uttering amazingly long, eloquent phrases, a fact which made the whole thing seem that much more real. But he did tell me what he wanted. And he described something he saw (The image of a fox engraved on one side of a penny. Nevermind the fact that there are no animals on American coins – this was a dream, people.) And – the part that stands out most in the hours that have passed since I woke up this morning – I remember his relaxed smile when he saw how surprised and thrilled that we were at his transformation. It was as if he was saying “Things were always going to turn out this way, Mommy. You just have to wait.”  I don’t remember his voice, exactly, but I do remember the sunny, hazy dream-like view through which I peered at my now verbal son. And I remember the sense of a weight being removed from my “soul” and the return of optimism.

And then I woke up.

And I felt sad.

Because the dream had felt so real, so entirely possible. But it wasn’t true.

Now, I have been called a cynic by people who don’t know me very well. And, the fact is that I was never actually a cynic – just a sarcastic type.  In fact, I remain a relatively optimistic person – probably the result of being raised in a stable, upper-middle class home, where things generally worked out just fine in the end. But, when it comes to my son, I have adopted a protective, cynical stance along the lines of “expect the worst and be pleasantly surprised if things end up better than that”. I refuse to be disappointed and instead challenge the world to prove me wrong – WISHING the world would be prove me wrong.

But I have occasionally daydreamed about what his voice would sound like, what kinds sentences he would speak, what kinds of opinions and preferences he would express…

In fact, my son is capable of speech and does speak a few words here and there, when prompted or when he’s attempting to get food or a cord to twist (his favorite form of entertainment).  But he’s not what I – in my unscientific way – would call “verbal”. And now that I hear the constant stream of opinions, requests, adorable questions and observations that flow from my 2.5 year old daughter’s mouth, I try to project all of that onto my son and wonder what he would tell me and what his voice would really sound like.  It’s kind of a fool’s errand as they say – a masochistic imagining that does nothing to lift my spirits in the end.

But in this dream, I could hear him. I could really truly hear him tell me what he wanted and what he understood. And I could therefore really and truly see him.

But as I staggered down the stairs a few minutes after waking up from this magical fantasy, rushing to the front door in time to see my son and say good-bye to him before the aide came and walked him to the school bus, the sweetness of my dream quickly faded. I told him I loved him and said good-bye with that expectant tone of voice and facial expression I use to indicate that he is supposed to say something in return. But he did not. He just continued looking straight ahead and then walked down the front steps towards the waiting bus without looking back at me or uttering a sound.

The Defensive Stance

A few weeks ago I took my daughter in for her first dental visit.  The appointment was at Children’s Hospital in DC. This location meant that we would have to park in a large underground garage, take an elevator to a large thoroughfare/lobby area, and walk down at least two large hallways, along with anybody else who happened to be in the hallway at the time.  These details are important for one significant reason:had this appointment been for my son, all of these elements would add up to become a long obstacle course for us to move through.

If I had been with my son, I would have been forced to shift into “vigilance mode”, keeping my body as close to his as possible as we weave through potential temptations and escape routes for him along the way. And the entire time we would move through this uncontrolled, boundary-less maze of opened doors to various clinics, passerby women who look like therapists to him, potentially exposed snacks lying on security guards’ desks, and an infinite number of cords (we were in a hospital – the possibilities of cords and things he could twist and pull is overwhelming to contemplate), I would be scanning my surroundings trying to foresee what he would fuck with next.  When I am out in public with my son, it’s akin to trying to gain ground in enemy territory (or so I imagine, as a woman who has never been in the military). I’m processing and examining every angle and player I can perceive in any given scene in order to spot the sippy cup or meal my son might steal from somebody else, or the piece of garbage (we were in a hospital, making garbage that much more suspect) he might pick up or eat, or the personal space he might violate of someone just minding their own business. I’m trying to pinpoint these incidents before he creates them so that I can apologize and tell one less person that day that my son is autistic.

So back to being with my daughter. The ease with which we can go out in public together is truly magical. In contrast to my militaristic mindset when I’m with my son, I can just be that mom that everyone else seems to be. I can let her wander a few steps in front of me. I can answer her curiosity-driven questions while I too look around me and simply observe what there is to be seen in a bustling hospital. I can relax knowing that she has a fairly solid understanding of the rules and will not do anything embarrassing or dangerous – at least when we’re not near a road (she has still managed to scare the shit out of me by running out into traffic a few times). Other than the fact that we were in a hospital, the ability to walk around casually with my child was a pleasant change for me.

When we arrived at the dental clinic, we sat down in the somewhat crowded waiting room.  My daughter played with the matching game I brought with us. She also grabbed some crayons and paper from the happy teenage volunteers who came to visit each clinic with games and entertainment for the bored children. And we just simply waited for our turn. I could let my guard down and just….be.

Then a middle-aged mother walked into the room and checked in at the front desk.  She seemed weary, a little bit dark (and by that I mean her outlook and not her complexion), and somehow familiar to me.  I had Delilah on my lap at this point and focused on helping her color on paper, while on my lap, all the while missing the fact that a hospital attendant was trying to pull a girl in a specialized wheel chair through the clinic door located next to me. The other mother, however, jumped in to help.  And I realized what I shmuck I must look like, playing with my adorable, healthy daughter, while a significantly disabled girl gets awkwardly dragged through a door directly to my left, without any assistance from me.

And after that moment had passed, I realized that the mom I had been watching appeared to have an autistic son. She asked him to sit down directly next to us while she finished something up with the receptionist. He was 18-ish, minimally verbal, and – obvious to anyone around – clearly “different”.  Now, at this point, my son still looks – at first glance – fairly normal…until he screeches, or chews on his shirt, or walks up to you and takes the cookie out of your hand to eat it himself. But I know that there’s a very real possibility that one day he’s going to have the easy-to-spot face that everyone can immediately assess as that of someone who has a few “problems”.  (Oh, I know, I said “problem” when what I should have said was “special needs”, or “intellectual delays”.  Well…this is my blog, so I get to be as blunt as I like. : ) )

When the boy’s mom sat down, she immediately scanned the game cart in front of us to find something that might entertain him. He seemed to be indicating that he didn’t want anything from the cart, but she ignored him and asked the volunteers to hand her a game or puzzle. She seemed to know what would work for him, even if he didn’t. And then it hit me.  She was me in 12-15 years.

She never once glanced casually at her phone or the wall or the TV in the clinic. All of her attention was directed at her son, what he needed, what he might do next, what other people might say or do next to him. Her eyes darted around the room as she sat stiffly, alertly. I decided to assume out loud what I was 90% certain of already.

“My son is autistic too. He’s just not here today with me.”

She said “I guess we’re everywhere, aren’t we?”.  She asked me if my son could talk (I said “minimally”), and she told me that she’d had luck with a spelling board that allowed her son to spell out his needs. I said “Oh, he reads?”, basically thinking that my son isn’t anywhere near ready to be taught something so academic. And she quickly shot back “of course they can read!”. And I said something like “I know that they’re perfectly capable of reading. I’ve read tons of stuff about autism and know what they can do. I just meant that my son isn’t ready to learn yet. He can’t read. I’m not sure when he’ll be ready to be taught something like that.”

She quickly changed her tone, realizing, I think, that I wasn’t judging her son or autistic people in general – only that I was making conversation and basically admitting that my son couldn’t read and that I was impressed that her son could. She apologized and said something about realizing how she sounded when she snapped at me. I said “no need. I get it. Trust me”. She gave me her card and told me to contact her about some group she’s part of in Virginia. I haven’t yet, because I’m a little burnt out on ASD groups at the moment.

But this exchange stuck with me for the rest of the day. I was not offended that she had misjudged me – negatively – for a few seconds. That shock that she mis-perceived in me regarding her son’s hidden but very real intellect…I understand that she has no choice but to be on the defensive against idle comments made by others who simply don’t/can’t get it. At the same time, I recognized her offensive stance in a public setting in which she needed to ensure that her son was entertained, obstacles were avoided, and that his needs were met. This woman was exhausted, but not able to give up completely. In fact, waving a white flag is not an option for parents with special needs children. This woman’s son was very much alive and kicking, and growing up next to her, and she probably couldn’t do more for him than she already had. I can only imagine the years of schools, therapies and medical bills she had behind her. I recognized the internal bitterness that was squished up right next to her love and reflexive devotion to her son.

It was as if she was playing on a tennis court in the “ready position”: knees bent, feet apart, racket in hand, eyes scanning for the next ball and trying to predict where it might land and what she would have to do to get to it and lob it back to the other side. I’m really not a sports metaphor type of person, but this image is the closest thing I have to explain how I also feel when I’m out and about with my son.  I always have to be ready for the next event that will come flying at me. There is no down time. I can never take my eye off “the ball”.

What scared me most about my recognition of myself in this woman was the very real fact that her son was getting older. And so was she. At the moment, I can still hold out hope that my almost five year old son will calm down a bit and internalize various social rules and expectations as he grows older, and maybe even learn to talk more. But there may come a day when I just have to accept that he will always be significantly “disabled”. In other words, he won’t fit in, won’t be able to communicate or participate in our world to the extent necessary to get a job and live independently. He’ll always need someone – namely me, as my older husband grows older, to be by his side in public to help him get by.  And then, when I can’t take care of him any longer…

Life is exhausting and long. And once you make a few key choices in life, the choices you make after that aren’t really choices so much as obligations – decision trees with fewer and fewer branches to select from. At some point, you’re just stuck walking a single path forever, until you die. I am a firm believer that happiness is a choice for many people, and something that you can get a little closer to with the help of a pill, if your brain needs some assistance in that realm. I want to choose to be happy, and perhaps at a later date, I’ll have the wherewithal to make that choice. But right now, I think of that mother and then see my own life path as simply a very long one on which I have no choice but to keep walking, whether I want to or not.

Older Husband - August 22, 2012 - 3:21 pm

Happiness is more of a choice when the rest of your Maslow’s hierarchy is a little more complete. When you bounce like a pinball between doctors offices and the myriad “treatments” to help our son and vacillate too often between complete despair over our seeming inability to help our son and the slim reeds upon which we, as parents of autistic children, hang our hopes for a brighter future, it is hard to really think about what happiness is…let alone how to achieve it. I try to manage the mourning of the death of the son I was supposed to have and mitigate the pain of watching my actual son struggle with things a 2 year old could easily do by forcing myself to continue to believe that we will find something or somebody to help Max. I know the odds are against us, but, I need to believe.

Happiness is that feeling I’m saving for when (not if) we prevail …

Hang in Maya…I love you and at least we have each other despite our less than ideal circumstances!

Filmstrip of Memories

This has been THE blog post that I have avoided writing, ever since I started gathering my thoughts about my son’s autism. I have been putting this one off for a long time in order to avoid ruining the rest of my day. But I need to document, document, document.

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Me, standing over his crib while he sleeps (sometimes I can’t resist picking him up to sway with him and nuzzle him, even though he looked so peaceful, curled up in his crib). I wish him happiness, above all else. Me, a hardened, completely unsentimental straight-talker, and I’m standing there gazing at my new baby and wishing him such a simple thing – above good looks, intelligence, an Ivy League degree, athleticism and….anything else.

My husband holds Max in the foyer of our home, excitedly repeating the news that he was told by our day care provider. Max said “stop!” today, shortly after his first birthday.  Eager to hear the word myself, I put on that parent face, excitedly looking at Max while I too say the word “stop”, pleading with my eyes for him to repeat it. And he does.  Smiles and glee all around as we celebrate this important [and typical] milestone in our baby’s development.

Max standing at the top of the stairs while we prepare to sit down and watch a movie.  He shouts “GOODNIGHT”, waiting for our response and admonishments to go back to bed.  He giggles and repeats.  “GOODNIGHT!!!”

Nightly bedtime routine: Max shouts “I wanna cuddle with Mommy!”, if I leave the scene too quickly and he’s not quite ready to go down without a fight….Then, as he sits on my lap and leans against my chest, he giggles between requests to “tickle my back” and “tickle my neck”. Cuddling with him each night was the best part of my day…

 

As our basement gets a complete overhaul after we discover major, disguised termite damage (a project that erases my husband’s savings that we were going to use to start our lives over again in Chicago, where we felt we would be happier), Max constantly observes that there are “men working with tools”. Sometimes he “sees” the men, and sometimes he remarks that there are “no men working with tools”. He even points out these men when we walk through the city and see workers on ladders and repairing roads.

Max calls out “school bus!” every time we pass by one on the road. As we drive to Virginia for day-care, he announces the “tunnel” when we drive underneath the Capitol each morning. As we pass over the bridge between DC and Virginia, he notices the “water”. He’s labeling – another development milestone that gives us that sense that all is right in our world.

August 2010: We pull up to his new day care center where – in two months – our lives will be changed forever by his diagnosis. He happily shouts out “AT SCHOOL!” to announce our arrival.

In the fall, it becomes a bit harder to engage Max, but I’m busy being a mother to two children, starting up a photography business, and barely making it to my day job in tact.  He eyes fade a bit, somehow.

December 24th, 2010. Max sees me typing into my computer, as I attempt to find the location of some event for our extended family to participate in. I’m distracted, but he’s trying to engage with me. He goes to fetch his own toy computer and says “Mommy ‘puter”. I am to stressed out and determined to find that elusive but oh-so-important piece of information. I can’t remember if I pick him up or acknowledge him.  This particular moment haunts me the most, as it is the last time I remember my son trying to engage me in play and label something spontaneously.

Christmas Day 2010.  Our living room overflows with people, unwrapped toys and wrapping paper. We are a noisy, busy collection of people. I see that Max is missing and walk to the kitchen and find him playing alone on the floor with the small Matchbox truck I got him (I had tried desperately to find him a simple toy that he might actually play with, since most previous attempt to interest him with toys had failed miserably, as evidence by a collection of specially ordered and untouched toys scattered throughout our living room). He looks disoriented and alone.  Perhaps he was perfectly happy being alone.  But I think of that as the moment when I really understood.  However, acceptance is something I’m still working on.

***********************

These are the scenes that represent my personal memory montage of moments where I can remember Max being different than he is right now. Sometimes I manage to shut them off as soon as the sappy soundtrack clicks on in my head. But sometimes, even if I’m in the middle of a mundane moment with my daughter, playing dolls with her or brushing her teeth at night, she’ll say something in particular or we will be in the middle of some routine that I used to perform with Max. And BAM! The sad movie queues up again and the tears push against my eyes.  Only once did I fail to sufficiently bottle up the pain. My husband called upstairs to ask me a question and could hear in my response that I had been crying.  He ran upstairs to see what was wrong. As he hugged me closely, I wept and cried “he’s gone! Our little boy is gone and he’s never coming back!”  (I have not managed to catch a case of my husband’s faith-based optimism, but that is the subject of a completely different post.)

Yes, we were parents who had no idea that our son was autistic. We suspected nothing, except for a speech delay.  While there were very obvious signs to us that Max needed some help in a few areas (he never gave me the animal sounds I was looking for when I sang “Old MacDonald”; he never paid much attention to the books I read him; he didn’t play with very many toys; he became fixated on objects like plastic knives and forks that he would carry around and sleep with), we signed up for DC’s Early Intervention program simply to document his speech delay in an effort to sneak him into pre-school early and put an end to day-care costs.

And after six months of pretty pointless observations by third-party contractors who DC sent to our home, and after a hysterical boy clearly needed me to come out from behind a one-sided mirror to control and comfort him during one particularly terrible day when he was left alone in a room full of 4-5 strange women who were performing a multidisciplinary observation that would lead to an even more terrible day for us…we still didn’t have a clue how much our lives would change. I’m sure that the psychologist who pulled me into a room that day for separate questioning knew exactly what she was dealing with as I innocently answered her questions about Max’s habits. But I think I was still happily mesmerized at that point by the simple steps the occupational therapist had just taken in the other room to calm Max down, dropping him from a few feet in the air so that he could really feel the floor hit his feet, slapping and roughly rubbing his back.  I remember being so surprised by the concept of sensory input that I shared what I had seen with everyone I saw for the next few days.  That’s it!  Slap the kid on the back and squeeze him a few times and he was as good as “normal”! But the psychologist’s line of questioning didn’t have that foreshadowing effect that I suppose would be included in a movie clip of that same scene (I can’t believe I’m the only narcissistic person in America that replays memories in my head as if they’re significant enough to make it into a movie one day.)

In fact, as the days went by following that last observation, I begged and begged for the coordinator to send me the results.  The school year was in full gear and I wanted one of those slots for my son.  Gimme, gimme, gimme those evaluations so I can get on with the process.

My wish came true one Friday afternoon as I worked from home on my laptop and thoughtlessly opened that email.

Yup. She sent me my son’s diagnosis of autism via email.

There was no counseling, not even a pat of sympathy on the back.

She fucking emailed that word to me.

Write more later….

 

Different. But Equal?

I’m about to work out some thoughts on the Interwebs that I should probably just keep to myself. Because I’m sure that if anyone stumbles across these, I will surely receive a slew of comments accusing me of being “ableist” or “hateful” towards my son and all other Autistics out there.

The fact is that I cannot bring myself to feel that Autism is simply another perfectly acceptable way of seeing the world, one that is just as “good/satisfactory/useful/valid/fill-in-the-blank” as a “neurotypical” mind.  And yes, I put quotations around “neurotypical” because I also have a hard time uttering this word without discomfort at best and sarcasm at worst. That word in particular seems so manufactured in an attempt to provide Autistics with something that describes the rest of us who don’t…well, there I go again wanting to use the word “suffer” but feeling that my hands are tied because I am also supposed to understand that Autistic people don’t suffer whatsoever from their Autism; they simply see the world differently and that is a wonderful thing.

I have read countless blogs and essays written by parents (mothers, usually) praising the world/god/universe for sending them such a bundle of valuable life lessons in the form of an Autism, who are grateful for their Autistic child and wouldn’t have life/their child any other way. This child is sometimes portrayed as some sort of gift provided to the world in order to teach us respect for each and every one of god’s creatures.  That, or people believe that their god has chosen them for the sacred task of raising and protecting an Autistic child – something about their back being “broad enough” to endure the burden. However the creation story goes, there are many parents out there who are apparently happy to accept Autism as another mystery of the universe that they should endure with a smile on their face.

Or at least that’s the way it feels when I read it.

And I have also followed a few blogs written by high functioning adult Autistics who can communicate with the world just fine, and use their blogs as a platform that encourages the world to accept Autistics as they are and make greater accommodations so that the minority – Autistics – can live more easily in a majority – “neurotypical” – world.  From their point of view, it feels like Autism is akin to a political party that has the temporary misfortune of not being in power; however, those of us lucky enough to be in the majority by virtue of our birth should accept Autism as an alternative approach to life, one that is just fine the way it is.  Keep your head down, play the neurotypicals’ game, and wait for a day when the world will accept Autism, along with Mormonism, homosexuality, etc.  These Autistic bloggers are apparently speaking on behalf of those who cannot. People such as myself are “ableist”, which is equal to being racist, chauvinist, sexist, and an otherwise terrible person.

However, I do not believe that my son’s Autism is a gift – to my son, my family or the world. I do not believe that it is a condition/world view/disability that I need to accept without making any effort to change or eliminate it.  I believe that we must work very hard to stop the Autism pandemic in its mysterious, relentless tracks.

I do believe that my son is a human being equal to me and worthy of the same human rights granted to those who are not Autistic. He deserves our love, respect, and a good education, and he most certainly deserves accommodation from a world that is not yet able to meet all of his Autistic needs (sensory, linguistic and otherwise). And I will work very hard to secure all of these for him.

But I will also work very hard to “cure” him, even though I understand that there is no “cure” for Autism, and probably little chance for “recovery” (I’ve read the statistics).  And I see absolutely nothing wrong with the fact that organizations such as Autism Speaks exists (although many Autistics take great issue with an organization whose mission is to “cure” the world of…them).

Why, you might ask, would I try to snuff out something that so many people have who lead perfectly good lives?

Because Autism has brought our family so much suffering. And I’m pretty sure I’m not alone in feeling that our lives as a family and my son’s life as an individual would be MUCH better without Autism.

My son cannot communicate his needs to us without the help of our guesswork, prompting, sign language and word supply (so that he can repeat the word back to us). He cannot make a choice between something he wants and something he does not want, short of grabbing the item himself and blowing off communication altogether. He cannot tell me that he wants to go home when we are out running errands. He cannot ask me for help.  He has no friends.  He cannot go through 15 minutes of time during the day where he is not told to stop doing something because he is either squealing in a quiet place, destroying something by kicking it or twisting it or squishing it, picking up/tasting garbage, or taking something that he shouldn’t – repeatedly – because he has no impulse control.

His sister cannot talk or play with him. He barely acknowledges her existence save for a rare moment where he holds her hand in the back seat of our car.  She may even end up supporting him financially and otherwise for the rest of her life, once my husband and I are dead. She didn’t ask for this, nor does she deserve to be burdened by a human being that her parents chose to create, rather than be free to make independent choices as to where she will live, what she will do for a living, and how she should spend her money.

I work two jobs (seven days a week, plus five nights) to help my husband pay off the debt we have acquired to provide various therapies for my son.  Indeed, my husband worries about having a heart attack due to the stress he feels when faced with all of our bills.  We are not saving for our retirements or our daughter’s higher education (nor can we even humor the idea of sending her to dance/art/music classes during her childhood that I hear about so many other parents doing for their own children).  Family vacations lasting longer than four days and not falling within a three state radius are out of the question. And when we do get away, we have to make very strategic decisions about room arrangements and then Autism-proof each room we are in while we are away (this includes restaurants, cars, hotel rooms, friends/relatives’ homes, etc.). We cannot stay at any gathering for longer than two hours at most before our son begins to act up, at which point we make our final apology for something he should not have touched/done and make yet another quick exit.

We cannot rest for more than two minutes when we’re with our son before either my husband or I have to investigate what he’s up to: is he destroying something? eating something he shouldn’t? peeing/pooping in/on the shower/bathroom floor/public sidewalk? escaping our home and running down a city street? pulling a glass vase off a shelf? emptying the contents of the cabinets in our home and moving everything to another location because – for whatever reason – that location is more correct than the original one? throwing a shoe out of the window of our moving car? endangering himself? jumping into a pool/lake/fountain before one of us can get there in time to stop/guard him? running into the kitchen of a restaurant or behind the counter to grab food that isn’t his when I’m simply trying to buy myself a coffee? knocking over a shopping cart and emptying all of its contents because he reached for something on a shelf that I told him repeatedly that he could not have?  Let me tell you: leaving our house to do something is an exhausting experience filled with yelling, destruction, and embarrassment (and not because our son is Autistic, but because he is about to or already did destroy something or do something utterly gross).

We don’t know if our son will ever learn to read, tell someone his name (god forbid he runs away and gets lost), graduate high school, learn a skill that might allow him to bag groceries or ring someone up at the gas station.  We don’t know what will happen to him after we die.  We don’t know that someone might not abuse him if he should end up in a group home one day.

Get it?  The list goes on and on.  AND ON.

My son does not have Aspergers. He is not mildly Autistic. He cannot speak very much. He does not know how to DO anything except eat, sleep, play in water and twirl cords. It is not a matter of teaching the world how to accommodate his strange interests, or training him how to be polite and make eye contact when having a conversation with someone. He’s not going to solve the world’s greatest math problem or mystify you with his amazing Autism-given talents.

Our home is a fortress that has been redesigned to prevent my son from destroying parts of it or accessing things that he shouldn’t. Because he can’t stop himself. Discipline, consequences, explanations? These things mean nothing to him. We cannot go to other people’s homes very often because he might destroy something of theirs or escape into the street.  Our weekends are interminable and filled with exhausting attempts to control our son’s bad behavior (and I’m not talking aberrant; I mean BAD). We. Never. Relax.

So when I read about the attempts of high-functioning Autistic people to encourage the world to see Autism as different but not less desirable as a world-view/neurological condition, that I should learn to accept it and appreciate all of those lovely little “quirks” and skills that Autistics bring to the world, that there is absolutely nothing problematic about Autism…

I DISAGREE.

I would not wish our lives on anyone.  And if I had the energy left to do something to prevent Autism from taking root in another child’s brain, you better believe that I would do it. Without shame or apology.

Because this shit sucks.

New Clothes, Rage and Guilt

So the weekend started out promisingly enough.  I stopped work early and went to the mall for a rare (and I mean RARE) two hour wardrobe update experience.  Not to get too far off topic, but I just need to confess that I don’t even bother shopping on sale. I get to the mall about 2-3 times a year, and usually only one of those times do I not have to keep 60% of my attention on keeping one or both kids from escaping up/down and escalator or pulling the arms off of a mannequin.  Thus, I barely look at price tags on these rare outings; I just take what fits and run.  The point of all of this is to say that I came back from the mall with a new dress, feeling utterly feminine and fashionably up-to-date, knowing that hubby and I were going out to meet another couple for dinner.  Yup. For one 7 hour period, I felt NORMAL. Just another mom buying some new clothes to make her feel pretty before meeting another fabulous couple for a night out on the town.

I think the best part of the night was when we [FINALLY] got to participate in that “kids say/do the darndest things” conversation, now that our two-year old non-autistic daughter is supplying us with all of those little stories parents toss back and forth when they get together.  That’s one of the little things that you fail to realize when your child is first diagnosed with autism or some other intellectual or physical impairment; not only do you completely start blowing off the books and helpful milestone charts your school and doctors send home with you; you also just shut the hell up when other parents start sharing this hilarious story of what their little Johnny said last night, right after he recited the alphabet in French while demonstrating a nuanced understanding of how his actions and words affect the people around him.  But last night, we finally got to enjoy that little pleasure that all those parents who went to Italy get to partake in, AND IT FELT NICE.

Fast forward to Saturday morning, when it all officially started going downhill.  That was when my son began his 36+ hour squealing (for all I know, he’s still squealing right now during his verbal behavior therapy session). These are not squeals of joy. Although my son is quite happy, so a stranger walking past us might think that these were temporary, short-lived sounds of pure happiness that are normal for a four year old.  Nope. Instead, this sound is probably the highest pitch my son is capable of screeching, and he does it repetitively. This is the kind of thing they could play in jail cells for captured terrorists in order to get them to talk.  I can hear that sound through floors, closed doors, and in even in my head as I type this. And no matter how many times I asked him to stop, I could not get more than 12 feet from him before he would make the sound again. And he wasn’t doing it to tease me or piss me off (although it did have the latter effect). He did it compulsively. Because it felt good.

And I became enraged. In between my two photography shoots, when I was able to relax and put on my professional, all-is-well-in-my-life face, I sunk back into a crazy rage.  Rage at my four year old son. Rage at my life. Rage at the people around me who could actually have pleasant weekends full of Rockwell-esque family moments. Rage against myself for not being able to control my reactions to my son’s subconscious need to stimulate himself in a way that was not harmful to anybody.

I saw at my two-year old daughter, who looked on while I screamed at my son to stop. I uttered the words “shut up” at my son and then immediately regretted the use of a phrase that we are not supposed to make acceptable to our small children. And I let my primitive, barest self present itself to my children, who did not deserve to see the sight of the person who controls their fate (til the age of 18) act so utterly bat-shit crazy. I felt terrible. I vowed to do better. I vowed to control my reactions.

After I put the kids to bed, I immediately looked up the mental health benefits offered by our insurance company.  Perhaps some professional anger management techniques were in order.  No go. $1,500 deductible before our insurance company would deign to pay 73% of each visit after another $30/deductible was paid for each visit. We’re just starting to make a dent in our autism-related debt, and I do not feel deranged enough to spend money confessing to a professional how little control I seem to have over my emotions, only for them to offer me some breathing exercises or visualization techniques that I can probably figure out myself by reading some books.

I went to bed on Saturday night with my cell phone in my hand, desperately searching for the words “anger son’s autism”, hoping that somebody had written a blog post that summarized my feelings and made me feel less alone and terrible about my parenting skills, or lack-thereof.  I found next to nothing. I did, however, stumble across a DVD about how two mother’s were trained to reduce the anger they felt about their children’s autism (ordered it). But what I didn’t find was what I desperately needed that night: a confession/blog/essay that spelled out – with total honesty – how angry a parent could feel towards their autistic child. And perhaps that’s for good reason. No one wants to admit to that on the web. Hell, the authorities might even take your children away from you for admitting to that level of rage.   But I just wanted to know that I wasn’t the only one.

What I did come across were some very lawyerly distinctions about how this or that parent isn’t angry at their children; they’re angry at autism.  I myself cannot perform brain surgery and separate my son from the autistic brain that is slowly causing me to become a terrible mother. (And yes, I am well aware of the intestinal/digestive/biomedical/physiological/etc. approaches to treating autism, but I’m pretty sure that the nerve endings that my son loves to stimulate with his screeching are located somewhere inside his head, along with the clogged neurons that prevent him from talking, so wishing for a brain transplant seems appropriate.)  In fact, I find it hard to believe that a parent can successfully and visibly separate their anger at autism versus anger at their child, without simply appearing to be furious with their own child.  And I applaud any parent who can take that anger, put it in a jar, and only let it out within the confines of a closed bathroom, bedroom or car, where their child cannot see it.

Sunday morning started out a bit more promising; however, by the time my son smeared his poop everywhere after he awoke from his nap (I was sleeping deeply in the room next door), I was back to my rage-y, bellowy, fearsome mom self.

I still have time to fix this. To be a better mom to both of my children and – at a minimum – leave my daughter with a vision of her childhood that she can look back upon as something approaching normal in a few instances.  Neither of my children deserve the picture their minds may have captured of their mother this past weekend.  My son should not wince when I come near him because I might scream right back at him the way he guilelessly squeals at me and anything else in the world (attempting to teach my son a lesson or demonstrate how annoying his squealing is to others is impossible and pointless; nothing is retained).  I just don’t know where that happy place is right now and it’s pretty damn hard to manufacture it.

I don’t do faith, small talk, or fake smiles very well – never have. But it feels like I’m going to have to figure out how to put on a show in my own home, faking it and theoretically making it. But probably mostly faking it for the sake of leaving my children with a pleasant memory of me.

LH - May 4, 2013 - 11:44 pm

I know this is an older post but I just found your blog and started at the beginning. I also read a blog “No Points for Style”. It is not an autism blog, but you will be able to identify with the Mom that writes about her mentally ill son. The story “Love with Teeth” is amazing and no holds barred honest. I hope it helps. http://www.nopointsforstyle.com/2011/01/love-with-teeth.ht

Maya - May 7, 2013 - 10:48 pm

I read Adrienne’s blog post — the link you sent me — and it all sounded so familiar. I totally agree with being brutally honest, because sometimes the truth is all I have in life. I just don’t have the energy to carefully select my words so that other people feel less awkward about my situation. Also, Adrienne and I are in an autism bloggers forum together, so it was kind of amusing that a total stranger brought me to one of her blog posts. Thank you for pointing that post out!

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