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It’s finalized. Simon will attend full-day kindergarten at the school my other children attend.
He’ll have help, but he’ll be in a regular classroom. He’ll need breaks. He’ll need guidance. He’ll still need speech and occupational therapies. But for the first time, he’ll be doing something academically that my other kids did.
The first two went to the touchy-feely, granola-eating nature preschool. They went outside no matter what the weather. They were given freedom to explore their surroundings and partake in activities mostly at will. They loved it.
But it wasn’t for Simon. Early childhood special education, small classrooms and therapists were what he needed. So we did that. Though I was a bit sad that he was missing out on such a special experience, he didn’t seem to know or care.
Now, he’ll be at the elementary school across the street that partners with the nature center. They still go outside every day. But the day is a bit more structured, and they provide help for kids who need it.
We had a meeting with staff members who will undoubtedly get to know Simon very well in his five years at the school, and I’m optimistic that he’ll do well. I think full days are going to be an adjustment, but once it becomes his routine, I am hopeful that he will love it.
I worry about other kids teasing him and his temper flaring up, but our school is no-tolerance in the bullying department. Kids are taught to be accepting and inclusive from Day One. Then I worry that actually might be a problem for Simon on the other end, as he tends to whack children who get into his personal space or don’t comply with his rigid ideas about how play should proceed.
I worry that his fine motor skills are not where they should be, and he’s really not writing at all. He can scratch out his name, but he can’t write other letters, despite three years of special education preschool. He’s not good with a scissors. Glue on his hands could cause a meltdown. I know these are all typical for a child on the spectrum. But he’s my child, and I worry that others won’t see what he can accomplish with some patience.
I worry incessantly about him leaving the protective bubble of special ed and mixing in with the other kids. He’s in a mixed preschool now, but his teacher is a special ed teacher, and she really seems to get him.
In short, I worry. I worry, I worry, I worry, and kindergarten is a whole summer away.
One of the first things I heard after Simon got diagnosed was that potty training kids on the spectrum was no picnic.
At the time, he was two and already showing interest in the potty, following his brother and sister into the bathroom and even peeing in the little chair occasionally. Like so many things that come to bite me in the ass later, I sighed with premature, naive relief.
Fast forward to four, almost five, and he’s still not trained. After spending most of last year wearing underpants (and soiling them as many as four times a day), I decided we should take a break. Everyone was getting frustrated, though we have been very positive in the little guy’s presence. Accidents have always been met with “That’s OK! We’re still learning! Keep trying!”
But there are only so many turds you can scrape into the toilet before you need a break. He just wasn’t getting it, and he became increasingly resistant to using the bathroom at all. And he’d still never said — not once! — that he had to go potty. I think there is so much bombarding his senses all the time that the subtle feeling of having a full bladder doesn’t register.
So I sold him on wearing pullups, and we spent a summer free from wet pants and piles of laundry. I felt a little guilty about it, but mostly it was a relief for both of us.
So when he insisted yesterday morning on wearing underpants, I groaned, picturing the messes and fights over using the toilet. I was right, sort of.
I was firm and told him he couldn’t wear underpants unless he peed in the potty. We set a timer that went off every thirty minutes and he went at least nine times yesterday. He got a (STAR WARS!! or SPONGE BOB!! or TRANSFORMERS!!) sticker for each time he did. The stickers were stuck to a chart. After three stickers, he got a prize from the prize bin I refilled with a hasty trip to Target.
He had one minor pee accident.
But he still absolutely refuses to poop on the potty. “It’s SCARY!!!”
And I still don’t think he knows if he has to go or not.
I’ve heard of lots of kids (even those not on the spectrum) being afraid of potty pooping. But most of them hold it in and let go only when wearing a diaper or pullup.
Not my little man. He’ll drop one in his undies (twice yesterday, for the record) and deny it’s even there.
I guess, like so many things with his disorder, I’m going to have to roll with it and take his cues.
I just hope it doesn’t take a few more years. I’ve heard 7 or 8 years old is not uncommon. Gulp.
It’s a beautiful, sunny spring day, and I get to spend it with Simon.
He’s sitting in the grass on the front lawn, picking dandelions and handing them to me.
“This is for YOU.”
His face is dirty because he couldn’t wait to be washed after eating. He just had to be in the sun.
“I want to stay outside forever and ever.”
He lays his head in my lap and pulls my arm over his 4-year-old body.
“The sun keeps me warm. And you.”
He sits up and picks at the grass.
“The grass is green. So green. Where did the snow go?”
I tell him the snow won’t be back for a few months.
“I want to bring the sun down here. I want to play with the sun.”
I tell him the sun is far away.
“Let’s get daddy’s ladder and climb up there to get it.”
There are times like today, when I’m worn out and not in the mood.
Those are the times when I sit down, head in hands, and let the hot tears of frustration escape from my eyes.
And usually, when I’m sitting there, feeling oh-so-sorry for myself, I remember something else.
I remember one of the times that my love is so strong, so deep that I can’t see anything else.
It’s usually something simple that triggers that familiar, warm swelling in my chest.
Like him asking if he can cuddle with me.
Or saying to his sister, “Come on! Let’s share this!”
Or holding my hand as we walk to the car.
For most mothers, any of those moments are ordinary. They don’t even register on the map of milestones or memories.
But for me, each is a hard-fought battle that has ended in a small win for both of us.
I’m happy to report there have been some really rewarding wins lately.
I lied, I’m posting again. Thanks, friends, for making me feel like it’s OK.
Anyway, Simon had eye surgery Wednesday, and the recovery sucked. He was in pain, and none of us slept, and just blerg. (He has amblyopia, or lazy eye. We hope surgery will be the final step in fixing it.)
But the past few days, he had been oddly calm. VERY unlike the Simon we know and love.
I noticed, but said nothing for fear of jinxing it.
Then today, when I picked him up from school, his teacher said his eyes looked great, and I went ahead and said it. And she said she noticed it, too. So I felt all validated and called Ed. Who agreed. And we had this whole conversation about how maybe many of his issues would melt away with his newfound binocular vision.
And then, I got him home. I’m working from home today, which is often a nightmare, so much so that if I don’t have a night meeting and need to work through the afternoon, I’ve been putting the little monster in day care. But I had high hopes that I could plop the new Simon in front of a movie and get some writing done.
He’s been a screaming, tantruming mess since we walked in the door. My ears are ringing from all the yelling at me. (And yes, people who think I don’t discipline him, I did point out repeatedly that I don’t do things for boys who yell. I waited until he asked nicely. Which often takes four times.)
He’s got an eye doctor appointment this afternoon, and between this morning, Ed taking him to the appointment and my night meeting, I will more than log in my eight hours.
But my Utopian vision of a calm afternoon has been blown to bits.
Here’s hoping tomorrow is a better day.
I feel like this blog has turned into a place to vent about parenting a child with autism.
That’s OK, don’t get me wrong, but it’s not why I started writing here. I was hoping to experiment, not really focus entirely on the kids, try different writing styles.
At first, I did that. Quite a bit.
Now, well, I’m exhausted. Drained. It often seems like, outside of work, this disorder saps all my time and energy. What little I have left goes to the other kids, who I am trying desperately not to lose in the autism shuffle.
I had always considered myself a positive person, but I seem to be spiraling the drain of negativity. I was hurt recently by someone close to us suggesting that Simon’s problem might not be autism, but simply poor parenting. I haven’t been able to let that go.
Some days are good, but many days are bad.
You see, this is not the kind of stuff I wanted to put out there. It doesn’t seem like me. But lately, it is. And it scares me. I need to find that positive person, the one who can see good in anything. The one who can laugh at herself. I know I’m still there.
But until I find myself again, I might steer clear of depressing the hell out of my friends and family on the Internet.
I promise, my next post will be funny. Or I won’t post again.
I have to remember some aren’t. But often, parenting a child with autism can be a series of irrational arguments:
While reading a book:
“The blue dog is on the yellow tree.”
“I want the blue dog to be on the GREEN tree!”
“Sweetie, I can’t make the dog move.”
“ON THE GREEN TREE! GREEN TREE!”
“Lay still so I can change your diaper.”
“I DON’T WANT YOU TO CHANGE MY DIAPER! I WANT TO GO POTTY.” “Great! Let’s go!” Take his hand — try leading him to the bathroom.
“I WANT TO WEAR A DIAPER! I want to be a BABY!!!”
“OK, lay down and I’ll put the diaper on.”
“No! I don’t want to wear a diaper!”
Bucking, screaming. Ten minutes later, finally diapered.
Petting the cat:
“I want to pet the cat.”
“OK. Be gentle. Stoke his back like this, see?”
Smacks cat. Cat runs away.
“I want to hit the cat! Bring the cat back here!”
“But the cat doesn’t like it when you hit him.”
“He DOES like it! I want to hit the cat!”
A three-inch-long object has lifted me out of a pretty dark week.
No, it’s not my phone.
It’s a surgical brush that we run over Simon’s arms, legs and back about every 90 minutes.
It sounds crazy, but it WORKS.
It gives him sensory input, which he really, really needs. There is a noticeable difference in his mood and behavior. He is sitting next to me right now, calmly watching TV without kicking me or trying to grab my phone, which doesn’t sound like a big deal, but IT IS.
So instead of moping around feeling sorry for myself, I’m hopeful. If such a simple thing can make such a huge difference, think what all the things we haven’t yet tried can do.
It’s funny how public places, especially those meant for children, are carefully laid out so those with disabilities can get around easily.
That is, kids with physical disabilities.
For autistic kids, the claustrophobic mazes and tunnels, low-ceilinged playrooms and jumble of screaming children crowded around every feature are basic nightmares.
The children’s museum is a mecca of childhood playtime where everything is meant to be touched and interacted with. Where other children happily flit from feature to feature, forgetting an adult is anywhere nearby.
Other children. Not Simon.
His sweaty little hand grips mine tightly. He offers a throaty scream intermittently — a signal to me that it’s all just too much for his system. He eventually crawls through the tunnels in the ant hill, but only if I’ll come along.
He’s of course drawn to the features where he can drive something — a truck, a car, a boat. But inevitably, there is another child already at the wheel. He is pretty good today about waiting his turn, but refuses to share once he’s seated. Toddlers, especially, tend to violate his personal space bubble.
The other kids like it here, but not as much as the zoo or the blow-up jumpy place, they say. Clare complains that I’m not spending enough time with her. I am not, but she doesn’t need me.
All in all, it’s a pretty good day with no major meltdowns. But I’m left wondering if Simon really had a good time.
I also wonder if I should, or should not, be exposing him to situations like this.
Most Fridays, our time for Mommy-kids fun, are a few hours to just play and see and do and forget about the rest of the world. But today, all I could think about was the autism. Around every corner was a booby trap set for Simon’s sensory system.
I’m glad the older two weren’t super excited about the place. I don’t think we’ll be back for a while.
So. This. is. the. big. week.
We find out Thursday what the experts say about Simon’s beautiful little brain.
The past few weeks have been excellent, and I’m hopeful that he’s turning a corner. He transitioned to a big boy bed without any trouble at all. He is engaging in imaginative play like crazy. He’s talking up a storm.
But it seems like every time I get hopeful, something smacks me in the face.
So knock on some wood with me. I’ll let you all know Thursday what the verdict is.