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Within the vast ocean of guilt that daily washes over me, the (working, how dare I?) mother of a special-needs child, floats some tiny electronic devices.
When he’s nervous, I hand him my phone. When the day has assaulted his senses for long enough, he finds the iPod. When it’s loud and scary at the amusement park in the mall, his dad sits on a ledge with him, and he loses himself in videos of trains and transformers.
I have always felt a tinge of guilt about how much time he spends looking at those little screens. When I was a kid, there was no such thing! I would have opened a book, I think to myself.
But I didn’t have autism. And until I read this post this morning by A Diary of a Mom, it didn’t occur to me to be thankful he has access to such an escape.
So now I’m adding my voice to the chorus of people who are mourning Steve Jobs today. What he did for society is great. What he did for our kids, amazing.
He’s doing well. Kindergarten, as far as we can tell, is a hit.
He’s still not potty trained, but I’m done stressing out about it. He’ll learn when he’s ready.
He’s doing so well that sometimes, like yesterday, I forget.
Last week, I had an evening event, so he went with his dad and sister to her gymnastics class. It’s loud and echoey in the warehouse/gym, something that triggers sensory fits and repetitive vocalizations.
So when they were going this week, I didn’t think to tell him in the morning that he would be staying home with me. I figured he’d prefer it.
We picked him up from school, and he was all ready to eat his dinner at gymnastics (a solution when we don’t have time to go home and eat). Problem was, we didn’t pack him anything, and time is tight on Wednesday nights. We’d have just enough time to get dropped off before they needed to head out. Definitely not enough time to pack him dinner.
It was too late.
The loudest, most explosive fit you can imagine ensued. I thought he was going to break the front car seat, he was kicking it so hard.
When we got home, instead of getting out of the van, he ran into the back seat, still sobbing uncontrollably.
I had to drag him out by his arm and carry his nearly 60 pounds of flailing flesh into the house.
I put him in our room, his time-out spot. I left, hoping a little alone time would help, but he started banging his head, kicking at the door, absolutely beside himself. He couldn’t make it stop.
I wanted to hold him, make it go away, but I know better. At times like this, I have to wait for him to come to me.
So I sat patiently on the edge of the bed. Every few minutes I asked him if he wanted to come up.
After a while, when there were pauses in the storm, he’d look at me for a moment, considering it.
Then, suddenly, he was there, next to me. He pulled up his shirt and grabbed my hand. I made little tracks on his back, my tears falling onto his smooth, white skin.
We lay there like that for a while, him adjusting when a new spot needed rubbing, me trying to wipe my face before I got him wet and muttering, “I’m sorry. I’m sorry.”
As well as things are going in so many ways, there’s always a slap in the face to remind me that it’s still here.
It’s not going anywhere.
Autism spectrum disorder, ADHD, sensory processing disorder, developmental delay, vocal and facial tics.
Scared little boy.
Teachers line the path, waving clappers. Music booms from a tiny stereo. Kids in new clothes with stiff backpacks, grins eating their faces, rush off their bus and scamper through the chaos, toward the building.
The principal sees him, the last to exit. It’s his first day as a student there, but she already knows him. His sister, a second-grader, is gently leading him toward the noise.
The principal is trying, too, but he doesn’t seem to hear her. His shiny new light-up shoes scuff the pavement.
His eyes are wide as silver dollars, and he doesn’t yet see us waiting for him at the end of the sidewalk. We knew the transition was going to be overwhelming, but he wanted to take the bus.
So we walk toward him. Hands rest softly on his back, sweeping him through the line. The teachers know. They tone down his welcome but still manage to offer a “Happy first day of school!” to his sister.
His sister, a star student, drops her things in her locker, kisses me goodbye and struts into her new classroom. Most of her friends from last year are in a different class, but she knows there are more to be made.
His classroom. A girl hugs the teacher. He stumbles in, eyes fixated on the bright blue alphabet rug.
His dad guides him toward a table where a gaggle of little boys, all a head shorter than he, my blond viking boy, are fishing rubber insects out of a clear tub.
They line them up, name them, hold them up to each other’s and growl. He stands, nakedly fearful, behind them.
I grab a two-inch specimen.
“Do you know what this is?” I ask, sing-songy, desperate to soothe him.
“It’s a fly?” he says, looking up at his dad for approval.
I do the same with a dragonfly. Both end up back on the table. He won’t join the children, who glance at him periodically, noticing his size, I’m sure, but probably also his Difference.
His dad pets the spot between his thumb and forefinger, trying to smooth out the anxiety.
“It’s time to grab a book, children! Pick one from the bin and sit down on the rug!”
He looks up at us, saucer-eyed. We smile. “Go ahead, honey. You can do it.”
And he does.
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.
Today, a gray, rainy day, things look brighter.
Simon played with the neighbor boy again and all was, well, not calm, but not violent. (They screech and stim out together, and watching them would probably alarm most parents.) I’m still hopeful they can be good friends.
And Clare’s friend wants to come back.
The other problems are still there, but what’s most important is that my kids aren’t too scarred by what’s going on.
I thought about taking yesterday’s post down, but I’m not gonna. There are days when I feel like that, and I’m not ashamed of it.
It’s been a long time. I’ve been in a dark place.
First, Buck was hit by a car. I opened the door and was reaching for his collar to tie him out, and he bolted. Long story short, the little shit ran into the road and a car ran over him with two of its tires. And didn’t stop.
He’s OK now. But we spent a bunch of our small savings to fix him up and it was a long recovery. I blamed myself and played the incident over and over for months. Every time someone opened the door and the dog was nearby, I would shriek or leap to tackle the dog before he could run out.
But worse than the dog problems are the Simon problems. He’s constantly messing with the dog, riling him up by waving his hands in his face, teaching him to nip at flesh. We spend far too much time intervening, and when we’re too tired to do it anymore, the dog gets banished to his crate. I love the dog, but sometimes I wish we didn’t have one.
Simon’s aggression has not improved. In fact, it’s getting worse. It’s bleeding over into day care, and I fear that school is next. I don’t know what’s triggering the hitting, but it’s worst at home. His sister is his favorite punching bag, but we are all victims.
He made a friend across the street, a boy who has sensory issues and isn’t fazed by the shrieking and short attention span. It was ideal — for a while. But it didn’t take long before he started hitting the little guy, who didn’t want to come over for a few days. He was back last night, and I stuck to them pretty closely to make sure Simon kept his hands to himself. It went well. I’m thinking I’ll have to supervise closely from now on, which negates the whole idea of us getting a break from his constant need for attention.
Clare had a friend over this week who was pummeled by Simon and jumped on by the dog, and now she doesn’t want to come back. The dog didn’t hurt her, but Simon did. I worry that Simon’s going keep Clare from having friends.
And the tantrums are still there, too. They’re frequent, they’re violent, and they often end in tears. Nothing we do, including home sensory therapies, seems to keep them from happening.
I’m close to cracking. Something needs to change.
So this week, I asked for help.
I reached out to a parent advocate from the state autism society, hoping they can help us find some behavioral therapy that fits our schedule. So far all the places I tried are really tailored toward stay-at-home parents. We work — because we have to, but also because it’s an escape. Take that as you will, and judge us if you must. But home life is not all that fun lately.
And I did something else, something that’s difficult to talk about. I made an appointment for Simon to see a child psychiatrist. To talk about whether medication would help.
It’s such a lightning rod issue in the autism community, and I understand why. I did not, and do not want to do it. But I’m desperate.
I want my children to have friends. I want Simon to stop being so miserable all the time.
I so desperately need for there to be some light at the end of this deep, dark, confining tunnel.
Things I have learned in a week and a half with our new dog, Buck:
1. Although Simon prefers dogs to cats, it doesn’t mean he will not hit, pinch or kick the dog. A week later, he probably kisses and pets the dog more than anything else, but Simona still has impulse-control problems, just like he does with the humans in our household. Thankfully, Buck has only seemed to even notice the assault once. He howled for a second after being pinched and got on with life. I still think it is important for Simon to learn how to treat animals with love, and that’s one of the main reasons we decided to get a dog. As he bonds with Buck, who happens to be a total lover, I have faith the problem will lessen.
2. A year-old dog is still a puppy in many ways. Buck has boundless energy, which is fine with me, but he doesn’t always channel it into the right places, such as any of the hundreds of dollars worth of chew toys we’ve bought for him. We have to watch him at all times to keep him from chewing electrical cords or swallowing plastic toys. The kids have done a pretty good job of keeping their stuff upstairs (the dog isn’t allowed up there) or off the floor, but every once in a while something gets dropped or forgotten.
3. Training a dog is harder than it looks. Buck is a hound and wants to be the alpha dog. We’re teaching him what his place is (bottom of the totem pole, Bucko), but in the meantime, the kids can’t walk him. Myles tried and got bit when he pulled on the leash to try and get the dog back inside.
4. Dogs are awesome. I have never had one and wasn’t really aware just how sweet, loyal and loving they can be. Buck is always on my heels looking for affection or even just a few kind words. When I sit on the couch, he’s there with me, head in my lap. He’s endlessly hilarious, always trying to do something beyond his physical capabilities. (His stout legs do not afford much clearance in the snow, and when he’s tired, jumping up on the couch takes several tries and sometimes a human helper.)
5. I doubt I’ll ever be without a dog again.
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.
So, you guys remember when we had the neighbors who were total thugs, and I saw one of them running through his back yard with a big old gun, and then they moved out and it was all happily ever after and shit?
Let me back up a minute and say that since I’ve become a reporter, I don’t read every story in our paper, and certainly not always all the way through, depending on the day.
So when a Maplewood cop was shot in the line of duty, I skimmed the story and didn’t look all that closely at the photos of the suspects, one of which was shot and killed by another officer later that day.
Today, a story about the family taking out a billboard was farmed out to me at work, so I had to read the stories. Carefully.
It turns out, the guy who lived, and who was just sentenced to 35.5 years in prison for aiding and abetting the murder of a police officer, was the very same guy who I saw running through the yard with the gun. THAT VERY SAME GUY, you guys.
Also, the one who got himself dead, he lived there, too.
In the paper’s archives, mugshots show up bigger than they do in the paper, and I totally recognized the Josh guy, the one with the gun.
Here he is.
He was also convicted of the armed robbery of the pizza delivery guy that happened right in front of my house.
And this guy? The dead one? Can’t count the number of times I saw him chatting with or getting frisked by the cops.
I lived next to these guys and called the cops on them a whole lot.
Cops went to my house first and then theirs. They totally had to know I had called.
I have three kids.
Any one of us could have met the same fate as that cop.
This article, from New York Magazine, raises a lot of the questions I ask myself all the time. When I’m in the middle of a miserable parenting moment, do I think of my childless friends who are able to go to a movie or pick up at a moment’s notice and fly to New York because the fares are low? Sometimes.
Do I envy people whose houses are always clean, whose cars are free of smooshed goldfish crackers and chewed up lollipop sticks? Yeah. I do.
Would I trade my kids for any of that stuff? No way. Without the miserable moments, I wouldn’t get to sniff a clean kid head, kiss a soft cheek, teach a kid a card game or splash in a kiddie pool.
I’m not denying that much of parenting sucks. It’s just that the (admittedly few) high points more than make up for the low points. And lonely? Well, that’s something I can be guaranteed not to feel for many years to come.