Tag Archives: Autism

Leaf Piles and Imposter Syndrome

Autism, Parenting, , , , , ,

A few months ago, Radcliffe came to me with tears in his eyes.

Me: What’s wrong?

Radcliffe: I don’t want to tell you. I need you to take me to the doctor because something’s wrong with me.

After some coaxing, he said this:

Radcliffe: I hear voices and I know it’s weird and I’m embarrassed and people are going to judge me.

I internally start to panic, but I remained calm.

Me:  Are the voices telling you to do things?

Radcliffe: (looking at me quizzically) What? No! These people live in my mind like a movie and they have adventures and fight bad people. But they keep having adventures, even when I try to ignore it.

He inherited my brain, I realized. I hugged him and told him I needed to show him something. I brought him into my office and pointed to a piece of white butcher paper taped to the wall with black sharpie notes written on it.

Me: These are the people that live in my brain that I can’t turn off. This is the book I’ve been working on.

I could see the lightbulb go off and a wave of relief wash over him. This child, who with Asperger’s sees the world in black and white but is the most creative child, does not understand his own creativity. It must be so confusing, to be nine years old and not understand that this is how a creative mind works when you generally see things in stark contrast.

We’ve talked a lot since then about stories, how they’re made, keeping a notebook of thoughts, storyboards, and how to turn thoughts into a story. Since then, he’s come up with two comprehensive storylines that, dare I say, exceeds anything I could ever imagine.

Last year, he won first place in the region for poetry and placed second in the state. This year, we received another invitation to an award ceremony, telling us that he had won first place in poetry for the region and the state winners would be announced that night.

Tuesday night, he seemed nervous. When I asked him what was wrong, he told me he was nervous he wouldn’t place in state like he did last year.

Jesus. He has imposter syndrome already and he’s only nine.

After lots of hugs and encouragement, we went to the ceremony where they announced he also placed first in the state for poetry. The look on his face when they announced it brought tears to my eyes.

He sat down and said, ‘Wow, this is really exciting.’

It really is. It really, really is. It seemed fitting that this happened the beginning of Autism Awareness Month. We all worry about our children, and autism mothers worry about their children finding a place in this world. While I will always have this worry, I love seeing our children find a spot where they feel good about themselves and seeing them light up when they are in that place. Every day is Autism Day in our house, not just the month of April. But these days? I’ll take every single one of them.

His poem:

Leaf Piles
Leaves falling like rain in a pile.
There are so many they make me smile.
A wind will make my pile gone in awhile.
But that’s okay, it’s just my style.

The Pendulum Swings Hard

Autism,

Rmedal

Sometimes the pendulum swings so hard in our household, I get emotional whiplash over the course of a week.

Both of our boys are on the spectrum, but their issues are wildly different. Theodore had significantly delayed speech but Radcliffe talked early, but their IQ’s are roughly equivalent, meaning that while they couldn’t be further apart on the spectrum, they are landing in a very similar spot. What works for one won’t work for the other, yet what won’t work for the general population, will work for both of them.

It’s exhausting.

We work hard in this house to focus on the magic, on their gifts that they alone have. But we have highs and lows, just like everyone else.

Radcliffe struggled with reading comprehension and has had to have intervention in school. While driving home from tutoring last year, he choked up and said, ‘I’m just not smart like my brother.’

I pulled over and sternly told him that wasn’t true and explained how everyone has special gifts. That seemed to suffice that day, but it has always lingered in the back of my thoughts. Until then, our biggest problem with both of the boys were their social skills, and I worried about adding one more damn thing to this poor child’s plate.

Radcliffe’s magical gift is that he’s basically lunacy at work. He is creative with no confines or structure to hold him back— a dream most artists would covet.

Last week, we went to the Young Author’s award ceremony for the region. We knew he placed in the region for poetry, but they don’t tell you if you’re first, second, or third. All first place winners automatically go on to the state competition.

We made a big deal about, and told Radcliffe we would take him to dinner before for whatever kind of food he wanted. He wanted to try ribs for the first time. Um, okay?

RribsCelebrating. Theodore is smiling, which means the apocalypse is coming.

When we got to the ceremony, they announced he was first place in poetry for the second grade — which meant he went on to state. And then they announced that he placed second in the state for poetry — the only kid in the region, kindergarten through twelfth to place in poetry. I was screaming like a maniac, jumping up and down. I almost felt sorry for the other people in the audience.

That high lasted all week. We’re making progress, I thought.

Then today happened.

He got off the bus crying and by the time he walked into the house, it was a full blown meltdown. I was able to get him to calm down and I took him to tutoring. On the way home, I had promised the boys fast food for dinner tonight, and I started driving that way, the opposite way of our normal route home.

During this drive, I started a phone conversation. It was wrapping up, and I pulled into the fast food parking lot and put the car in park. I started to hear dry heaving from the back seat and sobbing in between heaves.

The phone call lasted 3 minutes from the time I parked to the time I hung up.

He was dry heaving and sobbing because I stopped the car.

I had a flashback of my daily drives home from preschool with Theodore and how he would vomit all over the backseat if I took a different way home.

And then I had a flashback of the pediatrician giving me the best advice I’ve received since being a mom:

‘Make him as uncomfortable as you can stand it. It will exhaust you, but it will push him and desensitize him. It will be harder for you than it is for you.’

My job as their mother is not to make them comfortable, but to make them uncomfortable — to stretch them to their limits, so they know their limitations are only what they themselves set. It’s working, but dear God, is it so damn hard.

I refused to move the car until he got ahold of himself, which meant we sat in that parking space for a good fifteen minutes. My stubborn streak serves me well in these situations. He finally pulled it together, but didn’t speak to me for another hour.

When he finally came around, we had a pleasant bedtime. Exhausted, I came downstairs to start my nightly chores. While cleaning up, I found an extra copy of his poem on his desk. It was the reminder that I needed that this exhaustion is so very worth it.

Happy

Happy is flying in the air on Maw-me’s tire swing.
Happy is the song I sing.
Happy is time at Laser Tag
Or watching a movie that isn’t sad.
Happy is spending time with my nice little dog, Ruby.
Happy is fun and eating yummy eggs.

Judy Blume is Our Milestone

Autism, Parenting, Serious Stuff,

JudyBlume

I was told recently that my family was one of ‘the lucky ones’, a term thrown around to parents of children with autism who are higher on the spectrum than others.

I’m always conflicted on how I feel about that term. Yeah, I guess we are ‘lucky’ because both boys are much higher on the spectrum than most, but how are we lucky when both children are on the spectrum? They both have high IQ’s, much higher than their peers, but significantly struggle socially—something that while the IQ will get them the places they want to go in life in terms of a career, they need the social skills in order to play well with others once they get there.

Years ago, for Radcliffe, I had to fill out parental assessment forms for the school to do his IEP. That moment my stomach sank when I self scored the test will be forever seared into my memory. In case you don’t ever have to do it, let me just tell you—it sucks. You are holding in your hands a four page document that scores every single inadequacy your child has, the one that you are so proud of, beaming with pride over, all of his issues summed up into a number, tallied by your own words.

We are coming up on his 9th birthday, which means it is time to redo his IEP. The district psychologist called me today to discuss it, and I went on and on and on forever about how proud I am of all of his progress and how much better he is doing. At the end of the conversation, she told me she had sent home a packet of the parental scoring forms that needed to be done again.

Oh.

So, I filled them out. I thought for sure with all of the milestones and progress we had made that the numbers would be so much better, so significantly less that I could pat myself on the back for a job well done after a nine year struggle.

And then I tallied the numbers up. And the numbers are almost the same.

There are so many cuss words I could write about this, so much I could scream about it, so much I could throw myself on the floor and throw a tantrum about, so much I can worry about because I JUST WANT HIM TO BE OKAY AND LIVE THE LIFE HE WANTS TO LIVE WHEN HE GROWS UP FOR GOD’S SAKE.  It is so deflating.

Sometimes, it doesn’t seem like all of those milestones, all of that damn tedious crap you do in order to make them better, doesn’t amount to anything.

But it does.

After I finished scoring the tests, I walked upstairs to tuck the boys in, and read to Radcliffe. This child, who seems like the strangest child I’ve every encountered on many days, is my creative counterpart. Most days, he doesn’t like to read on his own, but we have taken up to me reading him a chapter every night out of a Judy Blume book. He snuggles up to me, underneath his train Pottery Barn blanket that ‘normal’ boys have, and asks me questions and we bond over our love of a story well told.

And then I wonder…what if he wasn’t on the spectrum…what would he be like? What would his brother be like? What would our lives be like? Would they be playing outside with all of the other little boys in our neighborhood? Would they love playing sports like them, throwing the ball in the yard?

The truth is that I don’t want that. Even with the setbacks and heartbreak, I have been given the sons I was meant to have, the ones to stretch me and teach me as much as I teach them and I want them exactly as they are. They are incredible, and while the milestones may be small and minuscule, they are still milestones, and everyone—-even those of us not on the spectrum—is reaching for their next milestone.

So for tonight, my milestone is reading to my freckle-face sweet natured boy who loves Judy Blume as much as I do, and making sure he falls asleep feeling loved. Everything else can wait.