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A New Leaf

leaves-autumn-colors-with-quote

“Autumn paints in colors that summer has never seen.” ~ Julia Davila-Lampe

At school drop off this morning, after Nik went inside with his one-to-one support person, I turned to walk to my car, pausing for a moment to watch the small group of Nik’s peers and school staff still outside waiting for the final bus to arrive before they go inside; it’s chilly and damp. The adults are standing in a cluster, talking, while the kids are milling around them. Some are playing together; others are in varying states of self-directed activity. They are all students in the same special education program my son attends.

My attention is captivated by two of the boys.  One I know only by name and face, M; the other is unfamiliar to me.

M, is completely nonverbal –I’m uncertain if he has augmentative or alternative communication tools as I’ve never seen him with any; he often seems withdrawn and, like my child, has little sense of personal space. Today, he catches my eye and sidles up next to me; he is playing with a leaf. He shoves it close to my face to show me. “Well, hello M,” I smile. “What a pretty leaf!” He’s twirling a golden yellow, perfectly formed maple leaf between his fingers. He looks at the leaf then at me. “May I hold your lovely yellow leaf?” I ask. Without a sound or a glance, M simply walks away toward the edge of the building where he spies a large pile of leaves. 

One of the adults has been watching. “If he knows you want it he won’t give it to you,” she says in a slightly apologetic tone.  I look at M, who is listening to the exchange from afar; I chuckle and shrug. “That’s OK, he doesn’t have to.” M turns his attention to the pile of leaves.

The other boy, whom I’ve only seen once or twice, bounces up to me, hand outstretched. He, too, is holding a leaf; it is dried and broken so that only the center stem and a few bedraggled bits of brown cling to it. He waves it at me and says, “Hi! This is Simon!”

“Hi, Simon!” I say to the leaf. “What’s your name?” I ask the boy. “I’m “A” he says before he walks away.

A moment later M walks over and stands very close. He hands me half of his lovely yellow maple leaf. Barely turning away from her conversation with her co-workers, the woman admonishes him. “M, leave her alone!” I take M’s offering, thanking him for his generosity in sharing his treasure. He smiles shyly and inches a little closer to me, looking directly into my eyes. The urge to hug him is strong but I don’t know him well enough to do so. Instead, I smile back and start to talk to M about the leaf– how pretty it is, how soft one side feels and how bumpy the other is. He simply smiles and wanders away toward the side of the building and his pile of leaves.

Suddenly, A dashes over to us; Simon Leaf is still clutched in his hand. “Simon wanted to talk to you about the weather!” he says. It’s clear that A wants to be included; I engage Simon in a very brief conversation. Simon is not a terribly vociferous conversationalist after all; A just stands and smiles at me. I see M quietly approaching, too.

A moment of serene quiet envelopes us. Both M and A are standing, leaves clutched in their hands, looking at me with rapt attention. I feel a little bit like the Pied Piper or, maybe, the leaf whisperer. I am slightly surprised to realize that the feeling is neither unwelcome nor uncomfortable.

The woman breaks away from their conversation to admonish the boys. “Guys, leave her alone. Come on, it’s time to get to class.” She’s not overtly stern but there seems to be a lack of warmth and I can see something in her expression –mild annoyance, maybe? She tells me, “I’m sorry about that” in a tone I recognize; it’s the same tone I use when my child has been grabbing onto the arm of a stranger in the store or when he has snatched the scanner from the hands of a store employee. Intentional or not, her apology strikes a note of sadness in my heart; it feels, somehow, slightly devaluing of the boys.  And yet, I believe this woman to be a kind person who cares about the children.

As the boys turn away, I thank them for visiting with me. I ask M for a high-five. He walks away instead. “Oh, don’t worry; if he thinks you want it he won’t do it,” the woman reminds me. I simply smile and say, “That’s his choice and I’m good with that.” 

A, still holding tightly to Simon, says “Simon says bye!” I tell Simon and A that I enjoyed meeting them and wave as A turns to go inside. He turns back and says, ” I like your imagination!” I grin, my spirits suddenly lifted. “I like yours, too! You’ve got a great imagination! His eyes widen a bit then he turns to get in line.

M approaches me, somewhat tentatively– his hand outstretched. He looks me in the eyes with a very solemn expression and gives me a gentle high-five –the merest brush of his hand against mine. He gives me another shy smile, lingering as if he wants to stay with me. “You’d better go, M; I don’t want you to get in trouble!” M trots off to join his class, falling into step with the rest of the group as they go inside.

Standing alone in the misty rain, I look down at the vibrant half-leaf still in my hand. My heart is full for the gift I have been given of a wordless child’s trust and connection.

If you ever doubt that nonverbal, seemingly “severely autistic” people don’t know what’s going on around them, I’d like to offer this for your consideration:

We saw a particular doctor, a neurosurgeon, several months ago to evaluate Nik’s “mildly tethered” spinal cord. During the appointment, Nik was very focused on the doctor’s stethoscope since he is enamored of all things medical. While Nik played, we discussed his symptoms with the doctor and plotted next steps including ruling out some things. We have not seen this doctor again (yet) since the initial visit.

Lately, Nik’s been having an upsurge of similar symptoms including intractable head pains. He’s also started using his device to ask to see this particular doctor. I, stupidly, assumed he was just randomly naming one of his many doctors.

Until this morning.

I asked Nik, after he had said this doctor’s name a few times, “What do you want the doctor to do?” Nik started answering with his self-scripted litany of the processes involved in taking vitals, etc. We see enough doctors that Nik not only knows the routine but has incorporated it into his play routines. It’s only recently that we realized he only engages in this routine when he feels “off” or needs to soothe himself somehow. Nik became entrenched in this line of pretend play and I didn’t know what to make of it. What was he trying to tell me.

He asked for the doctor by name yet again. Knowing how he might respond if I asked the question the same way as before, I changed my approach, asking him what he wanted the doctor to FIX. His reply blew me away,

“Fix head feel hurt.”

Always, ALWAYS presume competence and understanding. Even when you can’t put the pieces together, they are there. They have meaning even in their seeming randomness. Never give up.

Burning desire

On our way to school yesterday—

NIK: One, two.
ME: I don’t understand; can you use your words to tell me more?
NIK: I.want.candy.one.two.please.
ME: Thank you! Here you go.

I hand Nik two tic tac candies.

It’s a game we play each morning. It started years ago as a way of encouraging counting skills. Clearly, we are beyond that now and we have modified it over time. Now, I use this same exchange to work on language skills and, sometimes, concepts.

NIK: Three, four.
ME: I understand, but you just had two. You need to wait.
NIK: Three, four, please.
ME: Tell you what, buddy, you may have three and four after we pass the fire station.

As I hear the words come from my mouth, it occurs to me—I don’t know if Nik really understands. We don’t exactly narrate our daily travels anymore and we don’t know any firefighters. Other than a character in a story, I’m not sure Nik’s really been exposed to the idea of a fire station. I mean, we drive past the large brick edifice multiple times a day—on the way to school, on the way home, when we go to the store, the park, the pool.  It is a landmark known to everyone because of both its importance and its location. We take it for granted as simply another part of the scenery.

NIK: Three, four. Now, please, Mama.
ME: No, sweetie. You need to wait until we get to the fire station. Do you know where that is?

I see Nik sign “yes” in the mirror, but I’m not convinced he really knows.

As we approach the intersection, the light turns red; I ask Nik to point to the fire station. He points, vaguely, to the right side of the car; the fire station is on the left. Realizing he doesn’t know what I’m talking about, my heart lurches a little.

In that instant, it becomes vitally important to me that my son understands what the fire house is and where it is— as if it’s a confirmation that he does, indeed, have things in common with his typical peers. After all, all boys love fire houses and fire engines, right? I sigh, wistfully, and remind myself that it’s okay if he doesn’t. Maybe.

ME: (clearly refusing to give up as I point to the fire house on the opposite corner) Nik, look. That’s the fire station. It’s the house where the fire engines live. Can you see it, buddy?
NIK: Fire engine.house. Fire engine house. Inside.
ME: Oh, sweetie, we can’t go inside. We have to go to school.

The light changes and we begin to drive. I tell myself it’s a start; we can keep working on it.

As we drive past the fire station, I hear some rapid vocalizations from Nik followed by a flurry of beeps from his device.

NIK: Fire engine. Sit. Fire engine. Sit.Later.
ME: Can you use a sentence so I understand what you mean, sweetie?
NIK:  I.want.sit.fire.engine. Today. I want sit fire engine today, please, Mama.

And that, my friends, is how it started to rain inside my car, forcing this mama to drive to school without being able to see a thing.  It is also why I am now on a mission to take my boy to the fire station as soon as possible.

Nik during one of his many hospital stays. This was his first birthday.

Nik during one of his many hospital stays. This was his first birthday.

Words into action

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The natural patterns and rhythms of verbal communication do not come naturally to Nik. Despite the fact that he’s had his speech device for three-plus years now, he still struggles with parts of speech and being able to put words together in a way which is understandable to “outsiders.” It’s just a part of how his brain is wired. Much of Nik’s default method of communication is “telegraphic,” meaning that he will use one word for multiple meanings and that meaning is figured out by the listener who must either be psychic or must elicit more information to determine the context in which Nik means them.

For example, Nik may say “Park Daddy” to mean any of the following:

I want to go to the park with Daddy when he gets home from work.

I went to the park with Daddy this morning.

Will Daddy take me to the park?

I like going to the park with Daddy.

In speech therapy, Nik is working on using “action words” to go with the things he labels. For example, when he says “Park Daddy,” Ms. K will ask what actions he can do at the park– swing, climb, etc. They work on pairing nouns with verbs and reinforcing structure and the relationship between them. It’s a painstaking process which needs to be supported consistently– not just in his twice weekly sessions with Ms. K.

Nik loves to chatter to me as we drive along to the store after school or on the weekends. I try to encourage and coach his language use all the time. Lately, though, I can tell that Nik finds it annoying. I can’t say I blame him; who likes to be grilled all the time, right? Sometimes, he flat-out refuses to participate and changes the subject to avoid the work. Others? He plays me like a fiddle and I don’t even realize it until it’s too late!

* * * * * * * * * *
On the way home from the store yesterday, we shared a small bag of chips. As we drove along, I doled out chips every time Nik asked “more chips.”
“Nik, what actions can we do with chips?”
We’ve done this exercise often enough so I knew, from the silence in the back seat, that he was processing the fact that chips are food and you can eat, bite, or chew food.  Uncertain if I would need to prompt him with possible answers, I asked again.

“Nik, what is an action we can do with chips?”

I heard the quiet beep of Nik activating the screen on his device to answer.

“H-O-L-D bag.”

Well played, son. Well played.

* * * * * * * * * *
I promised Nik we would go to McDonald’s after his therapy this morning. He was extremely excited.  We don’t dine there with any remote degree of regularity; I try to save it for special times (or travel emergencies) and he loves going inside to eat.   On the way to see Ms. K, Nik and I were discussing what he would have for breakfast. He suddenly got stuck in a loop and began to perseverate on eggs.

“Eggs, eggs, eggs, eggs…”

Doing my best to help him break out of it, I tried to expand the language. “Nik, what can you DO with eggs?” I asked.

“Eggs, eggs, eggs, eggs…”

“Nik, there are lots of things we can do with eggs, right? Eggs are food and we can…” I began to sign eat, bite and chew as possible clues for him.

“Eat, eat, eat”  he replied from the back seat.

“Very good! That’s right. We can eat,” I signed. “Or we can Buh…” as I signed the word bite and made the sound of the letter B.

“Eat, B-”

I could tell he was about to spell it out and I started to nod in approval.

“…A-C-O-N. Eat bacon. Eat bacon.”

Yep, I’d say he’s got the important stuff down pat.

Wordless Wednesday: All that matters

Just another ordinary day

Sitting at the breakfast table with my family… Just letting that sink in a bit…

Watching as Nik manages his bowl of cereal and banana, his scrambled egg and sausage, and a small glass of almond milk (hello, bottomless pit and hollow legs!). So very typical and yet…not. It occurs to me that, once I’ve prepared his food, the only assistance he needs lately is an occasional admonition to use his napkin or to slow down. To take a break from his methodical shoveling of everything into his mouth until it is overflowing.

I look across the table and watch my husband watching our son. He catches my eye and we smile. “You catching all this?” I ask with a lump in my throat. His only answer is a giant smile which transforms his face into pure joy.

So many years we worked with Nik to just be able to sit in a chair without falling over, to hold a utensil , to lift a cup. So many years we worked with professionals, like our beloved Ms. Michelle, to help him learn to tolerate textures, to initiate a swallow, to chew. Teaching him how to drink from a straw, to suck, swallow and breathe. The things which come naturally to babies but not to our child who spent too long on a ventilator and too long with tubes in his nose and mouth. All the years we wondered and worried, “Will he ever…”

The answer sits at our table in his very own chair with is very own place mat, dishes and utensils. It all looks so…normal.

It looks an awful lot like a resounding “YES!”

Phone Home

So, this happened recently:

*ring, ring*
Me: Hello?
Caller: Hi, Mrs. Andersen, it’s Ms. G (the SLP from school).
Me: Hey, what’s up?
Ms. G: I’ve been working with Nik this morning and he’s been doing such a great job using his verbs! He said “Call Mama” so I thought I’d reinforce his excellent communication with a special treat. Hold on, I’ll put you on speaker.
Me: (possibly a bit squeaky from the sudden lump in my throat). Hi, baby! Are you having a good day?
Nik: Hi, Mama. Swim.
Me: Did you swim today?
Nik: Swim all done.
Me: I know, sweetie. Who did you swim with?
Nik: Swim Mr. Mike. All done. Walk. Goodbye.

With that, he hung up Ms. G’s cell phone.

And then my heart exploded and my face leaked everywhere.

“I just called to say I love you. I just called to say how much I care. I just called to say I love you and I mean it from the bottom if my heart.”
~ Stevie Wonder, “I just called to say I love you”