Dear autism parent…

Okay.  I’m going to vent here a little.  And I’m sorry/not sorry if I am, in this post, seated on my proverbial high horse.  A Facebook discussion really got this topic back on my mind.  It drives me nuts when people share videos/blogs about how hard it is to be the parent of an Autistic child.

So much ‘autism parent grief’ is preventable if said parents could just let go of what they thought parenting would be like, and create something new that fits their child and their family.  This phenomenon is not restricted to parents of Autistic kids.  I’m sure every parent recalls those moments with their NT child where they envisioned this wonderful parent-child experience, but instead the child hated it and it was a disaster.  I think the meme below, created by and for parents of NTs, illustrates it beautifully.

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The difference is, it happens a lot more often and more dramatically to parents of Autistic kids.  And while I understand parents’ disappointment of lost expectations, there is a point at which you’ve gotta put on your big girl panties, accept your child, and stop setting yourself up for more disappointment.  …and setting your child up for more misery (!!!).

I can’t count how many times I’ve read an autism parent blog lamenting the tragedy of another birthday during which their child covered his/her ears and screamed at the Happy Birthday song, then proceeded to have a meltdown at the sensory overload and social overwhelm of the whole event.  In these parents’ narrative it is not the child who is the victim of the story, it’s mom and dad.  Poor mom and dad, who can’t even experience a proper birthday with their child.  These parents will go on to repeat the whole fiasco next year.  And they will grieve it.  Again.  And their child will suffer.  Again.  Folks, this is completely preventable.  It’s not your day, it’s your child’s day!  Stop singing Happy Birthday if your child hates it.  Stop inviting all these people over.  Figure out what works for your child to make it a special day and do that.

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My son does not recognize gifts. But he LOVES Target, so for one of his birthdays, we pasted Target logos all over his gifts to make them attractive to him. This is one tiny way we were able to adjust to make his day special.

I see it with other stuff too.  Trips to places the child is “supposed to” enjoy but doesn’t.  Child doesn’t want to sit on Santa’s lap.  He or she is screaming, self-injuring, melting down.  Mom is moaning to the internet about how hard it is, how terribly sad, how all the nice little neurotypicals waited happily in line, smiled big for Santa.  But your child didn’t.  Guess what mom?  Stop taking your child places he/she cannot tolerate and this won’t happen.  It’s that simple.  There was a family in an autism documentary I watched where the little boy’s favorite thing was to ride the city buses.  Every day after work his Dad took him to ride his favorite bus lines for a few hours.  That is what he loved, and so that is what they did together to connect and bond.  In the end, shouldn’t it be about our kids?  Stop making it all about you.  Yes, it’s hard sometimes.  You know what, parenting is hard.  Take care of yourself, seek out supports, but when it’s you and your child, structure your family in a way that accounts for your child’s individual needs, challenges, interests, and joys.

When I talk to parents of a newly diagnosed child, one of the first things I always try to impress upon them is this: adjust your expectations.  When you do, it has the power to change your entire outlook from a grief-centered perspective to a contented “this is our awesome family” perspective.  I suppose that is the basic message of the famous “Welcome to Holland” poem which is oft shared with parents of newly diagnosed kiddos.  And it really makes all the difference.  Don’t set yourself up for more grief, more disappointment.  Don’t make your child suffer for your own rigidity (hah- do you see the irony?).  Find a way to be flexible, to grow your parenting into something that fits with your kiddo.  Welcome to Holland.  It’s not Italy, but it can absolutely be great, if you would only give it a chance.

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Brown

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Mohammad, 8 years old

We are sitting at the table eating lunch.  Mohammad and Aliyah have a neighbor friend over, a mixed race boy that, by skin color alone, appears to be black.  Mohammad turns to his friend and brightly asks “Guess what color I am!”  The boy looks perplexed and Mohammad clarifies “My skin, guess what color skin I am!”  The boy’s brow furrows, “White?  Brown?” he asks.  “How did you know?!” Mohammad gushes excitedly.  Listening to them, I wonder which guess Mohammad has identified with, since the boy guessed both white and brown.  I say, “Mohammad, which one is it?  White or Brown?”  He says “I’m Brown!” then happily resumes eating his Mac n Cheese.  The conversation moves to legos and plans for constructing a fort in the bedroom.  I continue to contemplate the discussion of color and identity.

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Mohammad (8) and Aliyah (7)

My kids are half white, half-Iranian.  Though my Iranian-American husband has relatively fair skin and eyes, he does not identify as White.  His father has the darker skin and eyes that most people associate with mid-easterners.  His oldest brother does as well.  Our son, Mohammad, is tanner than his father, but has enormous blue eyes.  I wear the hijab (headscarf), which has negated my white skin and ethnicity, throwing me over that invisible and ever-shifting line between White and Not White.

Years ago I had a roommate who also wore the headscarf.  She and I looked nothing alike.  She was tall to my short.  She was brown skinned to my white.  She had dark eyes and I have light eyes.  Our white neighbor did not figure out that we were two different people until months later when he saw us together.  He was shocked.  The headscarf erases my whiteness, my American-ness, and my individuality in the eyes of most White Americans.  I become a nameless Other.

Before we had children I used to always tease my husband for checking off “Other” on the race selection part of forms.  “You’re white-skinned with blue eyes,” I’d tell him in exasperation.  We would debate the matter and always end up in a stalemate.  In part, my argument stemmed from my own resentment that he, the Iranian-American, could “pass” in society, while I, the White/European American could not, because of my headscarf.  It seemed unfair that he could claim “Other,” on his forms while seamlessly passing as White in public, meanwhile I had to put White/Caucasian on my forms while being treated as Brown and Other in public.

When we attend mosque nearly everyone is brown skinned.  Once, when Mohammad was 5, he remarked “Only brown people are Muslim.”  I asked him if I was brown, if he and his sister were brown.  “Well we’re Muslim so we’re Brown,” he said.

 

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Mohammad


I wonder what Mohammad’s friend, as a person of color himself, thought of Mohammad’s assertion that he is brown.  I wonder too, on behalf of my son, if a boy named Mohammad ever can claim the privileges of whiteness.  Like my hijab, his name alone seems to rescind that sociologic group membership.

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Aliyah

Unlike her brother, my daughter does not seem to identify with any particular color or ethnicity.  How much does that have to do with her name?  Her name, Aliyah, more or less passes.  It is not overtly Muslim, foreign, or ethnic, though it is more common among Black and Brown girls.  She looks white.  And she doesn’t wear a headscarf.  Is that why she feels no burden to identify with a particular race or ethnicity?  Has Mohammad’s name isolated him from whiteness from the time he was little, driving him to deliberately claim a separate identity in a way his sister has never needed to?

I don’t have the answers but I am curious to watch my children as they develop identity, to see where they end up.  And maybe now I understand a bit better why my husband can’t bring himself to tick off “White” on forms.

Diagnosis

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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

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.