Saturday, December 3, 2011

Let Me Tell You About Our Daughter

Dear Friends and Family and Strangers on the Internet,

Let me tell you about our daughter.

Sunshine is turning two! It's remarkable how quickly the years have slipped through our fingers. Only moments ago we held a tiny, skinny, old-man-looking baby who was entirely helpless and dependent on us for her complete existence. She is now a strong, skinny, cherubic-looking little girl who needs us only to open her markers and occasionally remind her to eat. She sees the world through big, bright, blue eyes and cannot get enough of what she sees. From the smallest acorn to the biggest tractor, she embraces her environment and devours it. Nothing in her view escapes notice and examination; she takes delight in nature and is entranced by the technology that even 30 years ago seemed so far-fetched. She brings joy to us and adds so much color to our lives. And walls. And her arms. She really, really likes art.

She remembers *everything.* This is a not a child one can lie to, not that anyone would ever want to. Her innocence and vibrancy is truly a thing to behold. Sunshine can take the most mundane of objects and experience them as though she was the first person to ever hold, say, a grain of rice. To her, everything is a toy, everything is a learning tool, everything is for her alone.

To others, she appears to be a dreadfully advanced child as she skillfully climbs the most perilous playground peaks, calling out the things she sees to everyone and no one at all. "Airplane! Tractor! Squirrel!" When stuck in a precarious situation, her determination in getting herself unstuck is a sight to see.

She is made of star stuff and she is perfect.

There's also something going on with her. Something's wrong.

We've had mild concerns, which we've expressed to her pediatrician, Dr. Baby Doctor, since she was 6-months-old. Despite all our hippie-dippie attachment parenting Dr. Sears ways, despite 11.5 months of breastfeeding, despite cosleeping for nine months, despite all that stuff that somehow magically creates an unbreakable bond between parents and child, despite all that, she never really needed us. She nursed, but never made more than the most fleeting of eye contact. She was held, but never melted into us, never held us in return. She talks, but she doesn't use her words to connect, express her needs, desires, or to share her feelings. When she cries, she never, and I mean never, has come to either of us, has never asked to be held, has never offered a hug.

She never really babbled. Her first "words" were animal noises. She was 18 months (and three days!) before she called for me, before she first said "mama," with any meaning. She was around that age when she first asked for help, and, to this day, doesn't ask for more juice, doesn't bring us her empty cup. She was 22-months before she gave us a hug, after we moved her arms into position, thinking perhaps some kids just need a little lesson in hugging. She doesn't react when someone is sad and ignores her baby sister. She melts down a dozen times a day (on a *good* day), every day. She echoes everything she hears but cannot put two unique words together on her own. She understands complex verbal instructions like "get your blue block and put it on the green table- nope, the block that's under the doll," but doesn't understand what you're doing when you point to something across the room. She gets very anxious when in bright, loud places and struggles to cope with sitting or standing still- gymnastics classes and library story-times are confusing and stressful and anxiety-creating for her. She doesn't offer you food if you're hungry or water if you're thirsty, though will compliantly fetch you a bottle of water- nope, not that bottle, the one next to it!- when asked. She tries so very hard to do what she's told and will search for just the book you asked for until she finds it.

She is different from other children. She's not better nor worse-acting. She's simply different. And we want to know why.

Two weeks ago we decided it was time to start figuring it all out. We called Early Intervention for an evaluation. It was one of the more difficult phone calls I've had to make, as it wasn't just a phone call. It was admitting to myself and others that something is really off with my child.

They sent a physical therapist and a speech-language pathologist to our home. Over the course of two hours, they played on the floor with her and asked us questions. They knew that we have a strong feeling about the root of her struggles, and, within five minutes, the PT stated, "I know you're worried about autism. I don't see it. I work with lots of autistic kids, and I don't see it."

We nodded and smiled, as that's what you do when your fears are being invalidated by someone who has no business or expertise in invalidating such fears when you didn't even ask them to, and I gently said, "Yeah, it's so tricky with toddlers, and girls especially." Girls present very differently from boys, you see, and so frequently slip through the cracks. This is well established.

The SLP wasn't so quick, though. She made quietly pointed remarks about Sunshine's lack of eye contact, her lack of initiating activities or communication, and her, in her words, "spectrumy-behaviors." They both gave us a pretty big ego boost in telling us how engaged and responsive we are with Sunshine, even if she's not engaged and responsive back.

Sunshine never once looked up from her various activities to check in with me or her dad, never once tried to include us, never once needed our reassurance. I asked the PT, out of a little bit of spite, what she thought Sunshine's deal was, socially. Why, near the end of the evaluation when she was tired, overstimulated, and heard me explain that we don't spank, we "do time out. I just count, 1, 2-", and burst into hysterical tears where she stood, not moving toward anyone for comfort, not embracing me back when I dropped to my knees to hold her, explain that I didn't mean it, that she wasn't in trouble, that it was all okay. Why, if my child isn't autistic, does she not need me?

"It's just her personality. Or she has OCD."

Yes, thanks, my 2-year-old has obsessive-compulsive disorder, which totally explains why she is oblivious to children her own age, why she has only spontaneously tried to comfort her squalling baby sister 3 times, why a stern facial expression means nothing to her, why she is unmoved by praise, why she points out every Boeing, John Deere, and Peterbuilt without looking at your face to see that you're interested. Maybe it explains why she stacks things regardless of their ability to be stacked, why all objects and toys exist only for her to touch with her hands, face, mouth, and feet, why she loops her words- especially when anxious- saying, "paci, snack, apple, medicine, park, apple, paci, park, park, snack, paci, snack, park, medicine, apple," over and over and over, why she flaps her hands, walks on her toes, shrugs her shoulders, flicks her fingers at her eyes and mouth, why she takes her toys off the shelf, dumps them out, feels them, puts them back in their container, puts them back on the shelf, then moves on to the next thing over and over and never really plays with her toys, why she is in literal constant motion, why she *needs* to jump and spin to calm down. Maybe OCD explains that. But, please, all-knowing PT who clearly deserves a book deal, explain why she doesn't *need* us.

Our daughter doesn't need us and we need to know why.

The evaluators aren't permitted, with good reason, to tell you exactly what's going on right then and there. They need to run the numbers and establish the level of delay(s), which are then relayed to you by your caseworker. That said, they told us at the end of our session that V's fine and gross motor skills, adaptive (self-care) skills, and cognitive abilities all seem typical. We knew that. They then said that they could tell us, without tabulating the results, that she would qualify for services due to both a speech and a social delay. We knew that, too.

In our state, a child needs to have a minimum of a 25% delay in one area or a 20% delay in two or more areas in order to receive services through EI. We will be receiving the hard numbers and results on Monday when Sunshine's caseworker comes to help us understand her results and set a game plan. You can bet I'll update you then.

We meet with her pediatrician, who is not a developmental pediatrician but who does "specialize" in autism, on Dec 15th for her two-year checkup and a special meeting to discuss the possibility that Sunshine does, in fact, have autism. We'll be bringing (what I hope is!) a concise list of our concerns and the EI report.

Our hope is that he'll not only validate our concerns but refer her to either a developmental ped or neuropsychologist for further evaluation and, if necessary, a diagnosis. We've decided that if, for whatever reason, he thinks more "wait and see" is called for, we'll go over his head.
Do we think we're smarter than doctors? Not by a long shot.
Do we know our child? Yes.
Do we want an ASD (autism spectrum disorder) diagnosis because it's the hip, cool fad of the day? No.
Do we want an ASD diagnosis so we can ensure that Sunshine receives (and insurance covers) the services and therapies that will help her grow into an adult who is able to establish meaningful relationships and cope with the world around her?


My daughter, my Sunshine, is perfect. She is determined and courageous and silly. She is beautiful and gentle and independent. She is goodness and light. She is made of star stuff.

When I sneak into her room at night before we go to bed, I tuck her in, take all the books and blocks from her bed, and kiss her silken, golden head, tell her how proud I am of her, tell her how much I love her, I always think of Napoleon's words regarding China, and unbeknownst to him, my daughter:

"Let her sleep, for when she wakes, she will shake the world."


  1. I love you Erin, you are an amazing mother and I hope you guys get some answers/help you're comfortable with.

  2. It's tough not knowing! My twins had a total loss of language between 15 and 18 months and were diagnosed with autism 30 minutes into our first evaluation with EI. After 6 months of asking every person what they thought (and thinking I needed a referral for EI) and having every single person including our Pediatrician tell me they were perfect, nothing out of the ordinary, just identical twin boys yada yada, we were momentarily shocked at the answer! Things are good now though- they started school 3 weeks later, they attend an autism program 5 days a week and have extra speech and OT twice a week. The first year was crazy but we have been lucky so far. no battles here! I write about my boys and autism on my blog, you can check it out if you want!