2 years ago

The Autism Post I’ve tried to write for 2 years [continued]

So we didn’t send him. Emmett did not continue with the state funded special needs program.

This post is part II  about our ever changing journey with our son, Emmett, who is 4 years old and was diagnosed with Autism December 10, 2013, just before he turned 3. Part I can be found here.

Property of Carolyn Svellinger

 

So far, I’ve been left breathless too many times to count due to many of Emmett’s astounding -and oftentimes frightening- actions.

There was the one summer we discovered that Autism and wandering go hand in hand, when I turned around to look for my 2 year old who had been playing at my feet mere seconds before, but now was not there, was not anywhere, and it took three adults and 4 other small children to find him… yards away from a pond. You can read more about that incident here.

2 particular times I looked at Emmett and was left speechless in a more positive light.  I’ve been waiting 2 years to write this out.

Why? Why the waiting?
I’m a parent, I kept telling myself. I know all parents (as they should) believe their children have special gifts (which they do), but I was trying not to fall into the category of moms who believe their child is “gifted” and needs to be enrolled into Hogwarts because of their magical abilities. Emmett is delayed in many, many, many ways.  He’ll be 5 this Christmas and we have only recently broached the topic of sitting on the toilet and actually producing something. (SUCH a triumph, by the way.)

The day that opened the world to us for Emmett, it was Spring. We were visiting my mother in law at her house. Emmett’s brother’s were playing outside with Craig.

Emmett has almost always preferred to stay inside. He likes movies, but when the movie credits rolled, that was his favorite part.  Which, of course, we always thought odd, but whatever.  For me at the time, I counted it as a blessing because it was one of the few times of the day he wasn’t screaming or thrashing about something we couldn’t figure out anyway. Remember, Emmett was/is nonverbal. Until only this year, he never was able to tell us if something was wrong, he’d never bring us the thing which caused distress, and he never used gestures to point or show us what the problem was. He’d just cry and scream and let spit fly.

But with movies, Emmett calmed down. Emmett would actually repeat the lines from certain movies which stood out to him. This became the way we could hear him speak.  He would sing the songs from his favorite Disneys. Emmett took a intense interest in the scene in Wall-E; where Eve meets Wall-E and they learn to communicate to and introduce themselves to each other.

Emmett used to repeat that scene tirelessly, and it didn’t matter where we were. If you’ve ever attended Mass where the Svellingers are present, you might have heard the words “DIRECTIVE? CLASSIFIED!” echoing off the walls.  You might also have heard bellowing, “I DON’T WANT TO SURVIVE, I WANT TO LIVE!”  Or, (from Mr. Peabody & Sherman) “MR. PEABODY, WHAT SHOULD I DO!?” as my husband carried him out to the foyer.
We noticed a pattern: that Emmett recited the lines from movies when he felt a similar sense in the goings on of his own world that may have reflected those scenes from the movies he knew.

So we used that.
We took lines from movies to let him know it was time to change his diaper, go to bed, eat dinner, go somewhere. I sang the Doc McStuffins “I feel better” tune after we did something he found to be unpleasant. And it helped- it changed our world, actually.

And here’s the thing about that!  We were told by one of the therapists who saw Emmett that “scripting” is a bad thing. That we should try to keep Emmett from doing that!
ARE. YOU. KIDDING. ME.

Yes! Let’s take away the one medium my three year old has found to use as a form of communication. Yes, so smart. Such modern medicine. So therapy.

So– back to my mother in law’s house, to that day where Emmett was laying in the living room playing with foam bath toy letters. Just kind of lining them up on the floor. The Disney movie Frozen had recently come out on DVD and we’d just watched it, the credits were rolling now.  I looked down and read the letters arranged in front of Emmett; a chill ran down my spine:

FROZEN

Had Craig spelled that before he went out to play with Lexington and Collin? I asked him. No.
I asked my mother in law if she’d done it. Nope.
None of the adults in the house had put those letters there.
I mixed up the letters, sat back, and watched Emmett come over and put them together. FROZEN. It was him.

Property of Carolyn Svellinger

Letters. He likes letters.
We ran with it. Emmett lit up in a way we’d never seen when we worked with him on letters.  He loved sitting with us while we read to him. In fact, now that I thought of it, Emmett has always liked letters. I had taken a picture of him staring at the credits as they rolled after watching a Disney movie. Only I didn’t notice then that he was actually looking at the credits.  At the time I took the picture, I was frustrated that he wouldn’t look at me as I called his name for a picture.

So we did what any curious parent would do: enabled closed captions on every single thing we watched.

Emmett’s response was instant. And positive.
We noticed that Emmett gravitated to any thing with letters or numbers on it- toys, or otherwise.
As one might imagine, we built up a hefty reserve of blocks, magnets, books and toys with letters on them. It’s where Emmett’s interest was, and where he seemed to enjoy it with the greatest peace. Finally, some peace at home.

Property of Carolyn Svellinger

Property of Carolyn Svellinger

Property of Carolyn Svellinger

Property of Carolyn Svellinger

***

One windy, Summer day a few months after the FROZEN day, my parents were visiting.  My Dad had taken the boys out back to scribble with sidewalk chalk. I stood in the kitchen with my mom, putting dishes away.
My Dad stuck his head in, “Emmett’s writing. Did you know he could do that?”
I stopped in front of the sink, bowl in my hand, “Like… writing words?”
“Yeah,” he nodded.

I grabbed my phone and stumbled out of the house, turned the corner and what I saw wrought chills down my spine and tears to my eyes.

UNIVERSAL.
OPEN.
SING.

Property of Carolyn Svellinger

Those words were written, along with letters and attempted other words all over the pavement, covering the pavement so thickly that the chalk dust was billowing around.  The scene was a strange sort of eerie: Emmett had written one word, and then three more on top of it so that I couldn’t tell without looking very long and hard what he’d written. Had I not the obsessive compulsion of over-photographing everything with my iPhone, I never would have believed I wasn’t exaggerating.

Property of Carolyn Svellinger

Property of Carolyn Svellinger

Property of Carolyn Svellinger

 

That was the second time the world of Emmett was opened to us.

And then it struck me to look back on some photographs I’d taken of his scribblings only a few weeks previous.  Below is the progression, I’ve discovered of Emmett’s learning to write:

Property of Carolyn Svellinger

Property of Carolyn Svellinger

Property of Carolyn Svellinger

Property of Carolyn Svellinger

Property of Carolyn Svellinger

I bought a sketch book and gave it to Emmett. At three years old, having no previous instruction on how to trace a letter, Emmett filled his sketchbook with words he’d never spoken before.

Property of Carolyn Svellinger

Property of Carolyn Svellinger

At first, we believed he was simply writing the letters he’d memorized from a book or a movie- you know, like a photographic memory or something- surely he didn’t know what he was writing, but only that he’d seen it before.  But after a short while, I’d watch Emmett write out a word, and in the midst of his sweet, nonsensical mutterings my ears would decipher the word he’d just written. It struck me that he knew exactly what he was writing.

Emmett liked to play a game where I draw the thing, and he writes what it is.  His favorite, for some time, was recreating the foods that the Very Hungry Caterpillar eats.

Property of Carolyn Svellinger

 

Since then, we’ve added more letter toys, more books, and more avenues for Emmett to learn to read and write better. His favorite thing is to sit at the desktop and “play W” which is simply typing on Microsoft Word in whichever colors or fonts he chooses at a font size of 200.
The funny thing is, I feel like I’ve hardly taught him a thing.  It’s like starting kindergarten with a kid who already knows how to read. I mean, that’s exactly what it is, I guess. Only, attach autism to that. From sun up, to sun down –I mean I’m not kidding, he has a night light we keep on his side of the bed and he sits up and reads until he falls asleep on top of his books, every night–that boy is reading, writing, and learning.

It was sometime a few months ago when I stumbled through the rabbit hole of Pinterest, searching for autism resources for reading and writing that I found the term Hyperlexia. I found a blogging mother whose son is hyperlexic.  I combed through Dyan’s posts with butterflies in my stomach as I discovered that this letter thing is a thing! There are other kids out there who love letters and can read at a crazy early age (some with autism, some without)!  Her blog is here, and boy is she good with the information. I tracked her down on Instagram and was amazed at the photo trail of her gifted son, who writes adorable lists of things he wants to do for the day in chalk on their driveway.

It is our hope that Emmett will be able to write in a way which helps him tell us what he wants and needs. Slowly we are finding it’s working.

 

We take notebooks with us, especially to Mass where it’s important to be quiet, and we use it to allow Emmett to have a sense of calm.  We use it to communicate to him that one of us is taking his brother to the bathroom, because otherwise Emmett will become upset [read: screaming & bellowing] at the fact that some of us are leaving, and some of us are still sitting in the pew.

 

property of Carolyn Svellinger
Emmett added “no” to my comment about Mass at the bottom

  
property of Carolyn Svellinger
in this note, Emmett angrily scribbled out what i wrote, in disagreement. Mass was not a breeze that day.
   

We have a little pocket sized prayer book which Emmett likes to read from especially during Mass.  Now, instead of hearing him bellow random movie lines, you’re likely to hear him bellow the Hail Mary, which I like to tell myself is more acceptable. Right? I can hardly be annoyed in Mass at a loud kid who’s just trying to pray. ;)
There are other ways.
“So, are you sending Emmett to school?” I am asked sometimes.

We don’t know. Right now, we are finding that we’ve gained more headway as his advocates than any of the outside help has offered.  So far, we’ve found that we feel pressured to sign the dotted line so that the school system can obtain their government paycheck. So far, we feel (in our local area anyway) that the concern isn’t for Emmett but, to put it crudely, for the sale.
The therapist named Lyssa has been the only person who felt like an advocate for Emmett.  And even she seemed tied up by her place of employment to feel she could speak freely about Emmett’s options outside of the local public special needs program.
I was worried about our local programs.   I waited.  We kept Emmett home.

I’m relieved to hear positive accounts from many parents from elsewhere, but where we are, over the two years that we have waited, I’ve heard from more than one person, aside from our own experiences, of negative, unsupportive happenings and staff. Craig and I are glad we have waited.  We are thankful that we have been able to learn about autism, hyperlexia, and most importantly, that we have been given time to learn from Emmett.

We don’t know what’s next.  Maybe a school for Emmett. Maybe not. Maybe an unschool-type of homeschool will work brilliantly.  But if there’s one thing I’ve learned about parenting children (outside of imminent health concerns), it’s to wait.

That’s what I’ve wanted to write for the past 2 years. Emmett’s letter exploration is chronicled mostly through my Instagram, if you’re so inclined.

 

20 comments

  1. Thank you for sharing! Our 3.5 year old ASD son has ALWAYS loved letters….he spells words, he reads, and has a true obsession with anything letter related. We had him in the school special ed preschool for 2 months and pulled him out! He is non verbal (only in the functional communication sort of way, because his vocabulary far exceeds any adult that I know). We are getting way more progress through our ABA therapies, than anything right now. We know whats best for our kiddos! And in our case too, school, right now, or maybe never, just isn’t what’s best! Thank you for sharing. We can very much relate!!

    Reply
  2. […] I have so many proud moments, but the ones that stand out the most always come back to sharing my son’s story on hyperlexia. I have had numerous emails and messages on Instagram about how parents have been relieved to discover that there is such a thing as hyperlexia. Recently, another mom wrote a blog post about discovering hyperlexia through my blog and her post really struck a chord with me. It really made me realize that I do have the power to help other families and that’s an incredible thing! You can read the post: The Autism Post I’ve Tried to Write for 2 Years  […]

    Reply
  3. The disapproval was palpable whenever I talked about homeschooling my Afon. It makes me angry to this day to think of it. He will be five in February, and he is in school. In the end, it became too much for me. I’m pretty sure he has ADHD as well as autism, and the dangerous situations he puts himself in + damage to the household goods is exhausting. I realized it was better to send him off to the care of qualified people (and he really likes it school!) than to exhaust myself and become a screaming, raging mess.

    Afon’s thing is drawing. He’s not as interested in letters. He sort of writes hieroglyphs, some of the letters which you can decipher, but he’s not interested in spelling out things. He is an amazing artist, though. All. Over. The walls. AHEM.

    Is Emmet still nonverbal, or is he getting better? Afon seems to learn words and then lose them. He’s horrified of the toilet as well. I’d love to hear how you eventually get E to use the potty. ;)

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  4. Carolyn, Glad I found your blog. I am a nanny for a family of 3. Their son, age 3, is in my opinion, autistic. I am trying to muster up the knowledge and courage to speak with them about it. I heard a good story on NPR one day you might like.

    http://hereandnow.wbur.org/2014/05/27/suskind-disney-autistic

    We are Catholic and have 3 grown children of our own who we homeschooled. One is married and a social worker. She has been helping me with my list of ASD symptoms to talk with the parents about.

    I think parents have so much to offer their children by homeschooling. It’s difficult at times, but the family bond is so different. I wouldn’t trade that for the world. Keep doing what you’re doing and I wish you and your family many blessings.

    Warmly, Patty L.

    Reply
  5. School has been mostly a positive for us, but if it weren’t, we’d pull him. It’s just too scary otherwise. It’s one of those things that I don’t think that a lot of people think about when it comes to SN kids, but I honestly fear for his safety. He is just such a target, and you can’t really even trust the staff 100%.

    Also, I almost started clapping when I saw your pictures.

    My son at 4:
    https://www.instagram.com/p/KVmmurEVx7/
    https://www.instagram.com/p/bA4fNzEVwU/

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  6. When you repeat back “help” to him after he typed it in that video, I love how his face just lights up!! Thank you for sharing this story. You are doing an amazing job.

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  7. That is fantastic that he loves letters! I tried to put my 3 year old into preschool but I could tell he was just different from the other kids. He was with 5 year olds who didn’t know their letters and my son was bored as he’d learned them at 18 months.
    So we took him out of preschool and are just letting him be 3.
    Moms know better all the time! :)

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  8. I applaud your efforts. What a beautiful boy! Your instincts will lead you where you need to go next. I have no experience with autism….only loving children and seeing them as wonderful creations of God, each unique. Follow the clues, take care of yourself in the process, because an exhausted Mommy likely will not be able to see the clues. It is wonderful that you found others that share some of your unique challenges. God bless you, Emmett, Daddy and siblings and your extended family in this family journey with Emmett.

    Reply
  9. I’ve been waiting for this ever since you wrote the first one. I don’t have a child with autism. But your sharing is not just teaching me about autism, but about parenting the whole person. I am a parent and a homeschooler and marvel at the unique brilliance and challenges of each child. I hope that we would all parent the way you are… sensitively tuned in to personhood, not just to diagnosis or the standard of mainstream “normal.” And with life-giving sacrificial love. I hope you continue to write and to share as you are able. Your son, and your family, are a gift to the world.

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  10. I applaud your decision to keep this amazing boy home, at least for now. Autism is SUCH a broad spectrum of behaviors, and some kids with it thrive in school and others don’t. Administrators aren’t always open to admitting that a child does not fit in a school, whether the mainstream classroom setting or inclusive setting for students with special needs…and teachers can’t really legally say it, even though they may desperately want to. I’m a middle school teacher and have witnessed this firsthand in my short 3.5 year career. So until you’re comfortable and confident that he could adjust and possible thrive, do your thing. ??????????

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