To the Mom of the Typically Developing Child at the Special Needs Gym

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R, enjoying a fidget toy in the spinning egg chair at the special needs sensory gym

I realize that I don’t know your story.  I realize that your child may have a speech delay, or been followed by EI after a premature birth, or beaten a devastating disease.  I don’t presume that she has had a completely typical life.  But I can see, at this point in time, that she is a typically developing toddler.  I have seen you and her almost every single time I take my son to the special needs sensory gym.  She is over a year younger than my son, and is a sweet, curious, and playful little girl.  I see that.  I see that she is adorable.  I do.  I know you wonder why I avoid you and her, why I cringe when she barrells over to us.  I know you are perplexed when I don’t seem appreciative that you have prompted her to greet my son, when you have praised her for offering him a toy or “helping” him with something.  I know you thought it was strange and perhaps a bit rude that I was not eager to bring my son into the rocking boat with her when she requested and you asked us.

Here’s the thing.  I don’t mean to sound unkind, but the truth is, we come to this place to avoid children like your daughter.  There’s nothing wrong with typically developing kids.  It isn’t that I don’t like them, that I don’t like your daughter.  I have two NT kiddos at home myself.  But the special needs gym is a haven for my Autistic son–and I’ll admit–for me.  It’s the one place where we can completely be ourselves.  It’s the one place where my son is not the odd one out.  It is the place where no one bats an eye when a child is happily stimming away, or has a meltdown.  It’s the place where I don’t have to explain anything to anyone.  And it’s the place where I don’t have to see the harsh comparison between him and his typically developing peers.

It’s also one of the few places he can enjoy due to his anxiety in public spaces.  We cannot go to the library.  We cannot go to the mall play spaces.  We cannot join a mommy and me group or take a gymnastics class or visit the Y.  But we can go to the special needs gym, and it is my son’s favorite place in the entire world.  It is also a place where he is generally free from the attentions of other children, which he finds agitating.

So when your daughter runs over to us, staring me in the eye, chattering away, and shoves a toy in my son’s hands, it is all wrong here, in this safe place.  He freezes, waits for her to leave him be.  I cringe, hearing all the words my son can’t say from the mouth of a child half his age.  I see her share attention and play pretend and it just reminds me how different my son is.  It pops my happy bubble, and I feel the worry creep in.  I don’t need my boy to speak or look me in the eye, I don’t need him to play “appropriately.”.  Yet absurdly, it still hurts to see other children doing those things so easily, so naturally, like it’s absolutely nothing.

When your daughter asked my son to join her in the rocking boat, and you repeated the question when he didn’t look or respond, I had to explain.  I had to tell you that he doesn’t speak or understand yet.  But I don’t come here to explain.  I come here because it’s supposed to be the place where explanations are not necessary.

I saw the confirmation on your face.  You had been pretty sure he was different, but now you really knew.  I watched you prompt your daughter to always say “hi” and “bye” to my son after that.  I watched you praise her when she brought him things he didn’t want.  I watched you caution her to give him space when it was clear she overwhelmed him.  Perhaps you were just doing what you would have done with any child.  But a part of me felt we were being used as props to teach your perfect child how to interact with “those” kids.  I resented it.  We don’t need the charity of your child’s attention.

After that I started to avoid you.  I know you noticed, but I’m not strong enough yet.  There are other special needs moms that can interact with moms of typical kids and it doesn’t affect them.  They can graciously manage the curious glances and fishing comments of parents, and the in-your-face antics of typically developing children.  They can smile at those children and mean it.  They can laugh with you and share stories like it’s no big deal.  They can drive home after without crying.  They are strong.  I’m not there yet.  One day I will be, then maybe we can have a cup of tea and you will show me what I missed out on while I was trying to cope.

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Too Much of a Good Thing

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My sweet son licks everything.  Well, everything except food.  My little love, who only eats 3 different foods, licks absolutely every other surface.  The furniture, the walls, the rug.  Escalator steps are a big favorite, and we were once informed by confused mall security that going up and down the escalator over and over while carefully pausing to lick each step was, in fact, not permitted.  My favorite is when he licks my face, which is his version of giving a kiss.  His BCBA once commented “we can shape that,” meaning teach him to turn it into a regular kiss instead of licking, and I thought: Not gonna happen; I love my boy’s kisses.  My standard response when strangers comment on the licking is to smile and say that he’s building an immune system.  This certainly seems to be true, as R is rarely ever sick and hasn’t required antibiotics since he was a baby.

These days, R especially enjoys going outside to lick the driveway, the road, and a series of large, decorative boulders that line our street.  I can see that this brings him joy and helps him meet a sensory need.  I cannot help but smile when I see how his face lights up, how he runs to those special spots- knowing exactly where he wants to lick.  I love his giggle when he finishes licking one spot and moves on to the next.  I love how he dashes from boulder to boulder along our street, arms and legs bouncing with excitement, jumping on his toes and down again.  But today, as I followed him through this ritual, I noticed that there was some blood on his face.  Alarmed, I pulled him over to me to check.  I saw that his tongue was bleeding.  He was unbothered by this, eager to get out of my hold and continue to the next boulder.  But it was like a little stab in my heart to see that this thing he loves so much was making him bleed.  I don’t want to prevent him doing these things he is so  compelled to do, these things that he takes such pleasure in, but I don’t want to let him lick his tongue raw and bleeding either.  This is the hard part.  Helping him find safe limits while honoring his genuine need to seek out these sensations and use them to self-regulate.

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.