Tuesday

Intake

The parents knew at the twenty-week appointment that something would be different about their son, or Baby B as he was known. He would be born with a complete bilateral cleft lip and palate. After his birth when the nurse finally held him up for the mom to see, she was delighted. He was beautiful, and she hardly noticed his cleft lip.

As a tiny infant, he was so quiet, pensive almost. He had huge blue eyes, and he would frequently stare at the corners of the room near the ceiling. The mom would whisper to him, "Are you looking at all the angels? The angels are with you, you know." She was convinced he was wise beyond what she could possibly know.

When he was a toddler and not walking along with his twin brother, she wasn't concerned. She knew he would get there. He was different, but normal. He would play with toys and look at books and complete a shape sorter like no other toddler's business. He would laugh and smile and "socialize" and even torment his brother by grabbing him at the front of his overalls and pulling him to the floor. The mom was a mixture of mortified and proud at this feat.

But as he aged and grew, something was really different about him. He would stick to the perimeters of a room when there was a party. He would walk around and around talking to himself. And only after the party was almost over would he mingle among the guests.

Then, he would "talk at" people and then walk away. He would take things that didn't belong to him and not seem to know this was wrong.

There were the hugs under which he would stiffen. The joke was that the boy didn't hug, he "leaned in."

But when he talked at people, he would look at them. He liked sitting on his dad's lap. He played with toys, even if it was alone.

He went off to preschool - an early childhood, special education program for speech. He carried two orange plastic spoons with him. He always carried those spoons, and even drew them in pictures of himself. He could tell the teachers everything they ever wanted to know - and maybe more - about sharks. They adored him. Everyone adored him. Adults adored him. They thought he was so smart and so funny.

But kids didn't understand him. He would walk up to other children and start talking about sharks or his spoons, and they would look at him like he was an alien and just walk away.

The mom's heart broke every time, but he didn't seem to know any better.

He and his twin brother were never particularly close, and that broke the mom's heart, too. Especially when the brother was diagnosed with cancer, and the boy didn't seem to understand or care.

In kindergarten, when he should have been in trouble a lot for being out of his seat, he was being coddled by teachers who knew and understood what he was going through. The other kids thought he was hilarious, and they all loved him.

But still, he would pace the perimeters of the playground at recess and talk to himself. He was terrified of statues and loud noises.

And so, the mom began to ask about the "A" word.

"No," they all said. Preschool teachers and kindergarten teachers and the speech therapist and pediatrician, "no, not at all. He's so social and so smart."

But . . .

A mother knows when something is not right. When everyone else is grieving and crying the loss of a brother taken from cancer and his brother says something totally off the subject, a mom wonders.

When the obsession turns from sharks to the country of China and a boy can repeat word for word and tone for tone every television episode he's ever watched because he's obsessed with television, a mom wonders.

When he continues to talk "at" kids or doesn't respond when they say "hi" in the school parking lot because he is looking down and talking to himself, a mom wonders.

When he doesn't understand that you're not to take a stranger's hand in the grocery store and say, "Come with me, I want to show you something," a mom not only wonders, but fears for her child. When he wanders away and is completely clueless that his family is no where around, panicking because they cannot find him, a mom worries.

But still they said, "No, no, he's fine."

And slowly he began to do more than "lean in." He began to hug and cuddle and play with his brothers and talk about the brother he lost in sweet kind ways that were so wise and right when his mother needed them.

The mom felt ashamed that at times she was surprised he was acting so "normal."

But he was getting older and everyone around him was getting older. The differences were becoming more pronounced, and the mom began to fear for the child's future if he didn't get some help, if she and the husband didn't get some help with how to respond to this child who was different. It was hard that he was so different. It was wonderful sometimes, but hard a lot of times. He couldn't sleep, couldn't ever sleep, and his mood swings were severe.

Other people, strangers, said the "A" word about him. If it was so obvious to them, why wasn't it obvious to those who knew him best?

It's because the "A" word is complicated. A puzzle, a spectrum, a mystery really. Right?

But he's so smart. He talks to people. He hugs and loves and cries and laughs and shows emotion.

There was one doctor, one doctor who asked so many questions to which the mom did not have black and white, yes and no answers. But she was finally honest with who her son was and what he had been doing. The doctor didn't know the answers either. But finally he said the "A" word, and the mom, who once was terrified at that word, didn't want to believe her son was that word, was relieved that the doctor finally said it.

It made sense to her, even if it didn't make sense to any one else. And she let out her breath and was happy he'd finally be able to get some guidance from someone who knows something about kids who are this special. She and her husband would get some guidance, too, and learn how to better respond to him and help him grow and keep him safe.

Facing the next step, an appointment called an "intake," the mom is actually excited that this is the next step toward helping her son shine. Her son who now hugs instead of leans in, who knows everything anyone would want to know about sharks and China and Egypt and dogs and history and geography and so many other things, her son who has the softest, most tender squishy heart that gets broken just like any other person's does, a boy who's creativity is endless and humor is deadpan, who's logic is both lacking and 100% right on, this amazing ten-year-old boy who is the epitome of a beautifully "spectrumed" puzzle, might finally have the chance to reach his potential.

And the world will be lucky to take it all in.




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