Love

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All three kiddos

Sometimes I try to look inward and analyze my feelings for R.  My love for him is so intense it is almost painful at times- the kind of pain that is an echo of the fear of losing him, knowing it would rend me completely. This intensity of feeling is ever present when I think about R, but it’s not that way when I think of my other two children.  This has bothered me every time I get to that point in the inward analysis.  I try to dissect it, to understand it.  I think about my feelings for each of my children very carefully, and, I hope, objectively.  I always come to the conclusion that I love them each the same amount, I just love them each differently. but never less.  So why the difference in that sense of intensity when I think of R compared to my other two children?

When I sit down and really think of that overwhelming, intense feeling my love has for R, I realize I have felt it about my other children, during discrete periods of high stress when they were in some type of danger or distress.  I felt it for weeks when Mohammad was a newborn.  He had pyloric stenosis and was so sick, literally starving and shrinking before my eyes for his first weeks of life.  He was initially misdiagnosed and by the time they finally hospitalized him and figured out what was wrong he was so sick and dehydrated that they delayed surgery for 3 days to stabilize him because he wouldn’t have survived the stress of surgery otherwise.

For those tumultuous first two months of my older son’s life, my feelings of love had that same painful, overwhelming intensity that I associate with R.  In fact, when my second child, my daughter, was born 18 months after her older brother, I had a hard time bonding with her.  When I got pregnant with R a few years later I opened up to my midwife about the trouble I had bonding with my daughter when she was first born.  I remember telling her that I didn’t understand it- everything was so easy with my daughter compared to what happened with her older brother.  She was perfectly healthy, never even lost an ounce of her birth weight.  Everything went perfectly.  So why had it taken 6 weeks for me to bond with her?  Why had I felt so confused and apathetic?  My midwife suggested that that was just it.  My only association with a new baby was one of extremely high stress and intense emotion.  My normal meter for what it was like to have a newborn was very off, and it probably impacted me when I had my daughter.

I think the midwife was right.  And while it took a few weeks, one day, just overnight, something clicked and that solid mama bond formed with my daughter.

I’ve had those intense love feelings with my daughter too- times when she was in the ER after a bad fall or after having been very sick with one thing or another.  The same goes for my oldest son over the years.  But that intense-emotion thing is not my day-to-day feeling for them.   But it is for me with R.  And I am realizing that for years we’ve existed in that high-stakes, high stress, intense, overwhelming please-don’t let-him-be-hurt-please-don’t-take-him-from-us place with R.  He is vulnerable in so many ways that my other children aren’t.  I am constantly, yet often subconsciously, on alert for him.  He’s four and a half and I still wake in the middle of the night in that irrational half-asleep panic where I have to check his breathing to make sure he didn’t somehow stop breathing in his sleep.  This is something I did with all my kids when they were newborn babies.  One of those weird irrational new mom panic things.  But with R it never went away.  And it still hasn’t.

And I think it all just reflects where we are at with R.  That primal “mama bear” protective emotion is always going full throttle.  My feelings are so intense for him, so much I’m bursting at times and it hurts.  But I don’t love him more than my other children.  It’s just that place, that parent “mode” we go to to protect our young when we feel that they are threatened.  Only with most kids that mode is temporary, like using the 4 wheel drive to get out of the mud or drive through snow.  It’s not a mode you use all the time for most parents or with most kids.  But with R we are always there.

That’s how I see it anyway.  I wonder if it will lessen as he gets older and I don’t know.  I do know that I don’t see it as a bad thing.  It’s intense, but it also makes the good moments of each day (of which there are many!) shine so much brighter.  I hope as my other children grow up they see it for what it is and know without doubts that we love them just as much as their brother.  I think they do understand it right now, and I often see the same fierce, protective love in their own interactions with their brother.  Isn’t it funny how small children can understand effortlessly things that become a lot harder to understand when you’re older?  I hope this is an understanding they are able to hold on to.  I love them so much.  I am so proud of them.  Every single day.  Even when I’m grumpy and snappy.  Maybe especially then.  I don’t know if I would have been as gracious and sweet and thoughtful if I were in their shoes.  They amaze me, and maybe one day they will read this, in fact I hope they do.  I love you guys!

Therapies

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I read the numbers on R’s assessment from Early Intervention (EI), and in his diagnosis report.  I don’t understand why the cognitive numbers are so low.  We had expected the low communication score, the low personal-social score.  Are they saying he isn’t smart?  I’m angry and defensive, worried and sad.  

“It’s because he’s just not interested in those things, not because he couldn’t do them if he really wanted to!” I tell my husband indignantly.  Still, I feel anxiously spurred to hurry up and choose therapies for him.  The psychologist recommended 35 hours per week of ABA therapy, but we have read things about it that make us feel uncomfortable.  It sounds like dog training.  It sounds harsh and rigid and unkind.  It sounds like they will try to change my boy, instead of supporting him.  I want to give him tools he needs to thrive, but I have no desire to make him appear NT.  

“ABA doesn’t have to be like that,” Clara*, R’s service coordinator and DT, tells me gently.  “It can be fun and play-based, and you can decide what the goals are.”  Still, I feel skeptical.  Our neighbors have a child with Autism too, and I ask her about their ABA program.  

“They are teaching her to clap instead of flapping,” my neighbor tells me eagerly, clearly feeling this is an excellent goal.

“Why can’t she flap?” I ask uncomfortably, not wanting to offend but not comprehending how this, of all things, is worth spending hours of therapy on.  

“Well it’s okay sometimes, I suppose,” she hedges, “but it’s not appropriate all the time; she needs to be able to do something more socially acceptable.”  I smile politely but inside I reaffirm my anti-ABA stance.  If this is ABA, it is not for us.  My husband agrees.  We choose Floortime instead, which we will have to pay for entirely out of pocket, unlike the ABA which would have been completely covered through EI for up to 35 hours per week. We can only afford 90 minutes per week of Floortime.  But coupled with the free DT, ST, OT, and therapy-group provided by EI we feel he is getting enough.  

 

It has been nearly 6 months. R is about to turn two.  It has been a pleasure to watch him blossom in engagement and interest in his environment.  Though eye-contact was never a goal, he has begun looking at us in those moments of perfect connection between us: when we are tickling him, swinging him through the air, blowing raspberries on his belly.  In Floortime we have learned not to try and lead an interaction, but to let him lead.  We copy him, we join him in whatever he is doing, which is usually stimming, running, or climbing.  In DT and ST we have learned to narrate everything.  “Up, up, up!” we say as he climbs the stairs.  “Down, down, down!” we say as he climbs back down.  Where he previously had no interest in toys whatsoever, he now enjoys examining toys that are identical but feature different primary colors.  Sets of blocks, or alphabet magnets, stacking rings, and so on are fascinating to him.  We discover that his favorite color is blue.  He will always hold the blue toy in one hand, while carefully picking up the other colors in turn, examining them and turning them over in his hand.  He carries something blue with him at all times.  But R has not made any progress in skills that would increase his daily quality of life, and this becomes increasingly worrying.  He has no means of communication at all.  It is not the lack of language that bothers us.  We have seen that there are many ways to communicate, and speech is not necessary.  But R doesn’t communicate in any way at all.  He seems to think we can read his mind, and becomes very frustrated when we don’t know what he wants.  It breaks my heart because I think he thinks we are arbitrarily denying him, when in reality we just have no idea what he wants.  He also still seems not to understand anything we say.  He will be thirsty and looking everywhere for his water cup, and I will say, “Here’s your water, R, water, water!” as I wave the cup in the air, but he never once glances up.  He continues to search where he expects it to be and begins to cry loudly that he cannot find it.  I must walk over to him and wave the cup in his line of vision right in front of his face, and then, only then, does R calm and grab the cup.

Besides communication, R also lacks adaptive and cognitive skills that would make his day more comfortable.  He cannot remove his own shoes or clothing, or help with dressing.  He cannot use a utensil and hates the feeling of wet or messy foods, which limits him to eating only dry finger foods.  He cannot open a lid to get to a stored toy or treat.  He struggles to understand that things move around and may not be where he expects them to be.  He also deals with a lot of anxiety in new places, and we are at a loss to help him learn coping skills.  I wonder guiltily if we should have given ABA a chance.  We never even tried it before rejecting it.  

 

One day I arrive with R to EI group but no other children show up from his group.  The group leader suggests that we join the group in the next room over, which is the drop off group.  She tells me there will be no other parents; the children in that group are there with their ABA therapists.  Curious, I agree and we move next door.  R is the oldest in his parent-child group, being about to turn two.  The drop off group is entirely two year olds, so for once he is among children closer to him in age.  I sit with R in front of some brightly colored shape sorter shapes.  He examines them carefully one by one, except the blue piece of course, which he holds in his left hand.  I look around at the other children and am astonished to see them doing so many things that R can’t yet do.  One child is playing with a toy barn, moving animal figures around, making the animal sounds.  Another child completes a puzzle, another is placing pegs into a peg board.  Some are talking to their therapists, others sit at the art table scribbling with crayons and gluing tissue paper.  I decide these children must not be Autistic.  They must be here because of some other delay.  Then I remember the EI therapist mentioning that these children are with their ABA therapists, not parents.  I look and see that every single child is with a 1:1 therapist.  I ask one of the EI therapists, who has sat beside R and is trying to engage him, “Are those all ABA therapists?”  

“Yes,” she says, and tells me the name of the company they are from, which apparently is one of the largest ABA providers to children in my EI catchment area.  

“So all these kids have Autism too?”  I ask, still trying to deny that this could be true.

“Yes,” she says.  And to my intense mortification, I promptly burst into tears.  It is the first time I have cried since or about R’s diagnosis.

 

When I get ahold of myself the EI therapist is saying comforting things, asking about our therapies, trying to be helpful.  I explain why we aren’t doing ABA, how conflicted I have come to feel about whether we are making the right choices or not.  All I want is to do right by him, but I feel I am stumbling around in the dark, winging it.  She suggests I sit and observe the ABA therapists in the room, and consider that perhaps it isn’t what I thought it was.  I do.  I sit for those two hours and watch.  The ABA therapists do not seem very different from my Floortime therapist.   They are cheerful, kind, and playful.  Nowhere is the villainous creature my mind had conjured based on stories I had read about abusive, old-school ABA.  I go home and have a long talk with my husband.  The next day we call the ABA company that the therapists I observed work for.  We tell each other it won’t hurt to try, that as soon as we see something we are uncomfortable with we can stop.  We decide to take a chance.   

 

*name changed to protect her privacy

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

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.   

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.