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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!”
Turn page.
Getting dressed:
“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.
I am posting this with my new iphone, which is not really all that practical, but I don’t mind. BECAUSE I HAVE AN IPHONE.
It’s precisely the kind of thing I don’t usually buy for myself, which is precisely why I bought it.
Yesterday sucked. I spent the day as a punching bag for a frustrated, sensory-seeking 3-year-old. Nothing seemed to help.
So when his dad came home all happy from a great day in the field, I decided to go get me some of that.
It worked, at least temporarily. Not for the kid, but that’s not something a sparkly new toy can fix.
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.
He does.
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.
Well, I got myself all ramped up for it, and now that it’s done, I guess it feels sort of anti-climatic.
I was so worried about Simon’s diagnosis, but why? It doesn’t change who he is.
Nevertheless, yesterday was a long and exhausting day for all of us. After two hours of testing and a short conference, a pair of psychologists determined he’s on the autism spectrum. But to add an extra bit of confusion (just what we need!) to our lives, he was diagnosed with Pervasive Development Disorder — Not Otherwise Specified, or PDD-NOS.
I mean, he is what he is, but what a mouthful! And yet another thing to explain to people. Maybe I just say he’s “on the autism spectrum” and leave it at that.
Anyway, we already had been set to start private OT, so that doesn’t change. We’ll probably attend some workshops at Fraser and we’ll definitely be getting his siblings some help with understanding him, especially Myles, who has been acting out toward his brother in anger. I’m sure it’s frustrating and confusing for him, especially because his father and I have hinted that there is something different about Simon.
Notice I didn’t say “something wrong.” Because there’s nothing wrong with Simon. He’s just wired differently, and the point of this whole thing is to educate ourselves so we know what he’s going through. Often, life is tough for the little guy, and our job as parents is to help him get along in it. Hopefully, this will help us do so.
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.
How about some lighter, summer fare?
Last night, as I was getting ready for bed, I looked down at the geek’s feet. He was wearing cargo shorts and black socks.
“Um, did you wear those to Myles’ soccer game?”
Smirk.
“Yeah, why?”
“BLACK SOCKS AND SHORTS IS FOR 80-YEAR-OLD MEN!!!”
“Really? I thought it was hip!”
Yes, my nerdlet. The only thing that would have been hipper is if you had replaced your shoes with sandals.
Sweet.
It has a name. At least part of it does.
Sensory Integration Dysfunction.
Big scary name, but basically, Simon’s nervous system does not function normally. He can’t sense the space around him as well as other kids. He doesn’t feel things like other kids. He gets overstimulated easily, but his system also craves sensory stimulation. Confusing, right? Just think how confused he is most of the time! Combined with his gimpy eye, it’s a wonder he can walk, let alone ride a bike, run or jump.
As we listened to the consultant describe what kids with SID experience, and how their behavior correlates, a lightbulb went off in my head. Suddenly, I get it. Everything makes sense.
The tantrums are still frustrating. I am still tired of the hitting, biting and hair-pulling. But I’m no longer frustrated with him.
He’s doing the best he can, most of the time.
It’s treatable, especially since we caught it at a young age. Therapy should help.
We’re certain he has SID. All autistic people have SID. Not all people with SID have autism. We’ll know if it’s both in a few months, but for now I’m happy to have some answers, and hopeful he’s on the road to being a happier little kid.
I wrote about it more over here: blogs.twincities.com/dailyjuggle.
Yesterday, I stayed home with a sick Simon.
Fever put a slight damper on his usual manic qualities, and he actually sat next to me, allowed himself to be covered with a blanket and watched an entire television show.
It was 20 minutes long, but still! 20 whole minutes of mommy-toddler cocoon, and the best part — the best part! — was that he let me hold his hand and stroke his pudgy little fingers.
I softly ran my fingers over the top of his hand, and I noticed he has a little freckle just at the base of his ring finger.
That freckle just about killed me.
By three years old, I knew every inch of the other two’s bodies. I had stroked, tickled and kissed every part of them. I knew every freckle, mole and blemish.
But even getting Simon to cooperate with a diaper change is difficult. He never sits down long enough to be examined by his mommy’s curious fingers.
Makes me wonder what other cuteness I’m missing.
It occurs to me, as I’m waiting for a late-night pizza, that I’ve not seen karaoke in a LONG time.
A cute, young, black man croons to some non-descript r&B/rap song. He’s off-tune, but not as much as his smiley, spikey-haired counterpart. His dimples sell the song, so no matter, along with his tight-fitting designer jeans, which gyrate and thrust to the music …
Next up, a curly-haired duo, probably sisters.
“Everybody go sandbagging today?” the one on the left yells. There’s a loud “woo!” in response before they break into a monotone verson of “Just What I Needed.”
A middle-aged balding man in outdated round, gold, wire-rimmed glasses offers a flat rendition of “Leroy Brown” that’s just, well, karaoke. And it’s not good, dawg.
College girls text in the corner, nodding their heads in tune with the music, definitely a new addition to the bar scene since I”ve been a part of it.
Something that isn’t? Some desperate dude asking my name and whether I’m there alone. Guess I still got it.
