Rules, rules, and more rules

I try to keep things positive with Quinn. Before we brought him home, we were lucky enough to have breakfast with awesome psychologist and author Dr. Kevin Leman. He lamented how he hears so many parents walking into Walmart while telling their kids, "You had better not act up! You better not touch anything! You better not ask for any toys." When you do that you're just planting negative ideas, he says.

So we keep it positive. But in our desperate quest to help Quinn stay at the school we really like, we've been blasting him with a barrage of rules. "Don't turn on the microwave." "Don't bang into any friends." Actually, it seemed to be working - he wouldn't do whatever thing we told him not to do, but the list kept getting longer as we added whatever had trouble he'd gotten into at school that day.

Then at lunch last week, I noticed him mumbling and I bent down to hear what he was saying. This is what I heard: "Do not pop anyone's bubble. Keep your hands to yourself. Keep your body to yourself. Do not put pebbles in your friend's mouth. Do not kick any friends on the slide. Do not touch the buzzer. Do not touch the microwave. Do not touch the green button. Do not bump into any friends."

Well, that was just about enough to make me cry. Poor kid. Who could keep straight that litany of rules? No wonder he was getting into new trouble each day. With so much negativity bouncing around in his head, honestly, what other outcome could we expect?

So you might think that this was a wake up call and I immediately changed my ways. You would be wrong. That didn't happen until the next evening, when I was telling Quinn that Miss Leticia said he did a good job of stopping a negative behavior when she told him to (believe me, that was progress!). He looked up at me and said hopefully, "Was she proud of ya?"

By George, she's finally got it! Let's get back to positivity! So on Thursday and Friday we kept telling Quinn how proud we were that he was trying so hard to stay inside his own bubble and how we knew he was going to keep doing better and better.

And guess what? GUESS WHAT? He's doing better. So much better that when Tom picked him up from school Friday Quinn's teacher pulled Tom into the classroom so he could see all the good things Quinn had done that day.

As always, who knows if we've cracked the code? Who knows if this will last? But positive certainly feels better than negative. To all of us.

A new school, a new worry

Quinn's new school is fabulous and his new teacher is terrific. Under her care he's already made so many strides - he's participating in songs, listening at story time, noticing (although not quite playing  with) other kids.

And then.

On Thursday, he had an absolute nightmare of a school day. So bad the teacher sadly told us that the (private) school might not be equipped to handle him. In retrospect, I shouldn't be surprised. Before school even started that morning, I saw him refuse to move when the teacher asked him too - VERY unusual for Quinn - and get right up in a little girl's face even after she asked him not to do that. Once inside the classroom, he was running around wildly, banging into kids and knocking them down, knocking over block towers little kids were building. He went down the slide before his turn and hit a girl already on it, and later he poked a girl in the eye.

It was about as bad as it could be.

And then.

On Friday, he was back to his old self. I hope - I pray - that Thursday was an aberration. That he was just out of sorts. We had messed up his schedule by pulling him out of school for two days to visit my brother. Also, we were out of milk so he had an unusually sugary breakfast of blueberries and a waffle with syrup, with none of his usually Cheerios and milk. Maybe one of those two things put his nervous system out of whack. Maybe neither had anything to do with it.

So we're on high alert, role-playing good behavior and talking about proper actions and reactions. But, Lord is this scary.

I would do anything to help Quinn achieve everything he is capable of achieving. I just wish I had a clue of how to do that.

My SPD toolbox

Quinn's sensory-seeking (part of his sensory-processing disorder) is the one thing about him that can really cause him problems. He craves deep pressure when he gets wound up, and that can lead to some problematic behaviors like leaning hard on kids, running across the room and banging right into them rather than stopping, and driving his chin into the dog's back. He might stomp on the ground during circle time, spin out of control when he is supposed to be sitting down or run through a shop or restaurant with little regard for who might be in his way. Taking him out can be a breeze, or it can be scary as heck.

We've been in lots of therapy, with four different occupational therapists. And in case your kiddo is in the same boat, I thought I'd share what's working for us:

First, some tools :

- A core disk. This works so well with Quinn that if I walk into preschool without it the teacher looks visibly nervous and asks hopefully, "Did you bring his cushion?" So we try never to forget it. His teachers use it during circle time, but also carry it into the church for worship time with other classes or into the audotorium for group activities. Something about sitting on this thing calms Quinn tremendously and helps him to sit still.

- A weighted vest. This is a tricky one. The vest definitely helps ground Quinn. But for some inexplicable reason, every time it's on he will only talk with teeth clenched. So we only use it at times when we really, really need for him to stay calm.

- A chewie. I bought a cute necklace from a company called Chewlry with a silver-dollar-sized disc to bite. Quinn won't wear the necklace - it comes off it you pull it hard, and he can't resist doing that -- so I carry it in my purse and it's always there when we need it.

- A backpack (on his back). The heavier the better. Deep pressure to go!

Next, some techniques:

- Engine check: This awesome technique was suggested by one of his OTs. When he starts winding up - and with practice I can spot this earlier and earlier - I get down to his eye level and say, "Quinn, your engine is running too fast. What would help it to slow down?" Often times he will tell me what he needs - a bear hug, to push on the wall, deep pressure on his shoulders, to chom on the chewie. If he doesn't tell me what he needs I list the above things - "would you like a bear hug? do you need to bit on your chewie?" - and he chooses.

- Move the wall: This one came from his really excellent school OT, who one day saw me trying desperately to sign him into school with one hand while attempting a death grip on his arm with the other hand so he wouldn't bolt.  If I need him to stand still like in line at the bank - which is REALLY hard for him - is I ask him to push really, really hard against the wall and try to make it move. It keeps him still, is instant deep pressure and calms him very quickly.

- Don't pop her bubble: Quinn was getting into a lot of trouble at his private school for getting in kids' faces, poking toward their eye, leaning on them, etc. So the OT from his public school (the same one referenced above) suggested that we tell him that everyone has a bubble around him or her, and he should not pop anyone's bubble (except for Mama's, Baba's and Nana's) without asking. Wow, does he get this one. The day after I introduced the technique, he ended up at the bottom of a pile of kids, with his friend Nicole on top. Out popped his little head and he shouted, "Nicole popped my bubble!"
He initiates this technique more than any other.

- Being loud in a whisper: The louder and more out of control he gets, the softer I talk to him. Yelling or traditional discipline just seems to fire him up. Talking soft gets his attention and helps calm him down.

Do all these techniques work all the time? Heck, no. But knowing I have all these options has helped me feel more confident when we go out, which I think Quinn can sense. In short, I'm not expert on sensory-processing disorder (not yet, anyway!) but these things have helped me, and I hope they can help someone else, too!

Finally, an Old McDonald's visit that doesn't depress me

Quinn loves visiting the playland at "Old McDonald's," as he calls it. For me, each visit is a new level of sadness. There was the baby Quinn suddenly and without warning knocked down, causing everyone who saw it to gasp in unison. The time I heard screaming from inside the play structure - not Quinn's, but I instinctively knew who was causing it -- and high-tailed it up the slide to find out I was right. The grandfather who glared at us for a good 20 minutes, even as he was leaving, because he mistakenly thought Quinn had bumped his beloved angel while he was spinning. The place seems to exacerbate Quinn's sensory-seeking nature in ways that looks a lot like serious disciplinary problems.

And that's not the worst of it. Each time we visit we watch kids make friends and play together. Other than when things go south, Quinn generally doesn't even acknowledge any other children. Finally, it's cute to watch kids make it to the top of the play structure and then holler or wave down at their parents. Quinn gets up there and does his own thing, in his own world, until we tell him it's time to go or the food has arrived.

It reached the point where we stopped going about six months ago. And then this morning, with my husband out of town and me looking to run down Quinn's battery before his final assembly and performance at Chinese School, he asked if we could go to Old McDonald's.

So we did.

And what a difference.

First, he scampered to the top and yelled down to me. Then he stuck his face against the inside of a bubble-shaped window and hollered at me, "Are you inside the bubble?" After a bit a little girl and her grandma came in to eat breakfast, but Grandma wanted to leave before the girl got to play. Quinn watched her the whole time and then asked, "Is the little girl not going to play?" Later on he asked, "Is a kid going to come play?" He actually noticed kids, and he wanted to play with them!

To another parent, this was hardly anything. To me, it was everything.

The magic cushion

There's no way to know exactly why, but Quinn has gone from daily problems at school to daily successes at school. We are trying a lot of things to help him succeed - daily joint compressions, daily skin brushing, a weighted vest and good 'ole bribery. So I don't know if one thing is key, or it's the combination. But I do know that the magic cushion is a major factor in his success.

A fellow adoptive mom who herself has sensory processing disorder gave his to us when she saw how much Quinn was struggling at Chinese school. He just could not sit in his chair and was really getting in other kid's personal space. It's a bean-filled plastic disc with a thick fleeecy cover. We take it to his special-needs preschool, his typical preschool and his weekly Chinese school.

I didn't realize how much it helped until I noticed that every day when I dropped him off the teachers would ask hopefully, "Do you have his cushion?"

Here's a link to the cushion itself. The cover, which has a velcro closure, was handmade - and all of his therapists covet it, so if you've seen them for sale anywhere, please let me know!

The Concrete Kid

Quinn is so very concrete. The whimsical and imaginary just makes no sense to him.

Two sample conversations from the last couple of days:

Mama (singing): "Here comes Quinny cottontail."
Quinn: "Hey, I'm a boy!"
Mama: "You're not a bunny?"
Quinn (politely but emphatically): "No, thank you."

***

"Quinn, what are you going to be when you grow up? Are you going to be an astronaut?"
"No."
"Are you going to be a scientist?"
"No."
"Are you going to be an engineer?"
"No."
"What are you going to be?"
"Big!"

***

Not surprisingly, drawing and coloring has been a huge challenge for Quinn. Give him a blank slate and ask him to create, and he draws a big blank. All we've gotten so far is page after page of angry back-and-forth lines covering a page.

So when I spotted a color-by-letter at the fabulous Indianapolis Children's Museum on a recent visit, I had a hunch it might appeal to Quinn's concrete nature. If it says O, you color it orange. Concrete.


I brought it home and trotted it out, and the results were nothing less than astonishing. This rooster picture was the very first one he did. And instantly, he went from angry scrawls to this (he even signed and dated it when he was done):

Our secret shame, or how we found success with bribery

I've never believed in bribing children to be good. And yet, here I am, doing it. And darned if it isn't working.

Between Quinn's many delays and his sensory processing disorder, he has a very, very, very tough time sitting still and acting appropriately in school. He also loves to bang, to lean, to push - behaviors that, even though they aren't done with aggression, look very aggressive. The girls cry. The boys push back. The teachers get frustrated. Quinn gets in trouble.

In short, Quinn's behavior was becoming a fairly serious problem at school. As in, the teacher pulled us aside when we picked him up, every day, to tell us about the latest problem. This happened at his preschool, at Chinese school and at his therapeutic play group. Making it especially challenging to help him address these issues, he doesn't do these things at home.

We tried everything we could think of and everything his various therapists suggested.
We talked about keeping our hands to ourselves. We talked about how everyone is surrounded by a bubble, and how we shouldn't pop someone else's bubble. We threatened timeouts. The behaviors continued.

Then one day about three weeks ago, I was telling Quinn how I knew he was going to do great in school that day and he said, "If you keep your hands to yourself, you get a dollar?" Hmmmm. What to do? Sorry, but I bit. And guess what? It worked. Immediately. Since that day, no inappropriate behaviors at school, and Quinn is becoming quite the math whiz adding up his haul.

As a side benefit, he's developing a sense of saving. Now when we go shopping he looks at the toys, asks the price and decides what he's saving up for. He vascillates between Smokey the Fire Truck and a big giant garbage truck, but he keeps saving.

I feel a little embarrassed that such a shameful technique is working for us. But I can't help but rejoice that it's working. My goal right now is to help him succeed in school. And if this is what works right now, then this is what I'll do.

Quinn's on a sensory diet

We have lot of things we do when sensory-seeking Quinn gets a little out of control. He knows his options, and can choose one when he agrees that "your engine is running too fast." He can get a bear hug, joint compressions, pressure on his shoulders. We can do wheel-barrow walks or he can push a big ball up the wall.

But it turns out, which I didn't understand until this week, that we need to be doing that stuff every day - or more - to try to regulate his nervous system.

So for the last couple days we've been getting up a little earlier to add joint compressions and brushing of his arms and legs to our morning routine. Then we do the same two things again before school, and if it's a late school day he wears his compression vest for a bit while we get ready in the morning.

Funny with all this stuff: Just when you think you're doing it right, you learn you've been doing it wrong.

Live and learn.

Educating the special-needs kid

We've been playing a little revolving door game trying to find the right preschool fit for Quinn. He is in a public special needs program, which is great at teaching him to follow rules and learn the ways of a classroom. However, the needs of his classmates are so great that there isn't much peer interaction, which is a real need of Quinn because he remains mostly uninterested in other children.

At his therapists' recommendation, we set out to find a "typical" preschool where Quinn would see - and hopefully model - more normal interactions. The first attempt was the excellent language preschool that just wasn't equipped to redirect him all day, and decided against enrolling him. The second try is an evangelical school with a special-needs program. Things were great until the assistant director who deals with SN kids retired at the end of the year, and was replaced by a woman who has owned a preschool but never actually dealt with SN kids. She sees his challenges as disciplinary problems that can be solved by punishment. So we yanked him out of there, but - long story - we're trying again, but without her "help." His OT will go with him to school tomorrow and offer some ideas to deal with some behaviors that are disruptive and possibly dangerous: poking kids in the eye and banging or pushing into them. He never does it out of meanness or anger, but out of a need for deep sensory input. Still, it's a problem.

On the one hand, I totally get it. If Quinn was in a class with a kid who seemed to be acting aggressively toward the other kids I'd be freaking out. And yet being around kids is the only way he's going to learn to be around kids. Such a paradox.

Preschool dropout

After a three-week trial, the preschool for kids with speech delays decided not to enroll Quinn. They said that redirecting him ("Quinn, sit down. Quinn, are you listening?") was taking too much of the teacher's time. I can't say I blame them, because I know that is a challenge for him.

Surprisingly, I actually feel some sense of relief because I had been working my tail off trying to hide his challenges since this school doesn't take kids with issues other than speech. We were getting up early to run him around the 'hood and burn some energy, watching his diet very closely, not letting him watch any TV in the morning, etc., etc., etc. All good things, of course, but we were making ourselves a little nutty worrying about them all.

So we're back in the hunt for a school that's a good fit for Quinn. Today we visited a church-affiliated school that employs a PT who specializes in sensory processing disorder. They allow about two kids with SPD in each class. But all the kids get "therapy" -- they bring in an OT every Monday and do lots of sensory play every day. In many ways, this place is the opposite of the last school. While that one was very academically focused, this one doesn't really do academics at all. Its philosophy is that kids (at this private school, in this high-end neighborhood) are getting that sort of stimulation at home; what they need at school is social interaction and play. Since Quinn is doing great academically but is in desperate need of social skills, that sounds good to me. The catch: They might not have a slot for him. The school's SN liason was planning to put him in the 3-year-old class (their ages are developmental, not chronological) but changed her mind after meeting him and seeing his impressive brain at work on a puzzle and a game.

And so we wait. We play. And we enjoy our extra time with this fabulous little guy we're blessed to call our son.

Plan B

After much negotiating with the principal of the preschool I've been trying so hard to get Quinn into, she agreed to take him on a one-month trial — provided I came along with him. So I got my schedule all worked out, and then ... she called and said they've decided they want us to come again for a "visit" — and that visit won't be until two weeks into the school year. At that point, he may or may not be invited for another visit. And at the end of all this, he may or may not be accepted. 

What it comes down to is, I think, is they just don't want Quinn at their school. It's grant-supported, and in these tough economic times I think they're quite desperate to show that every kid improved with their curriculum. Because the principal fears Quinn has autism, I believe she's scared he'll skew her rankings. I get that, but I also know Quinn a little better than she does, and I honestly do believe he would thrive there.

But ... but. She expects him to fail. So, really, how could he not??

So while I made the appointment for us to visit in a couple of weeks, my gut tells me we won't be keeping that date. Instead, we're going to return to his special-ed preschool and I'm going to ask that the goals in his Individualized Education Plan be updated. Because, honestly, his speech delay isn't that big a deal anymore. He's progressing beautifully. Instead, I want to ask them to work on helping him to listen and follow directions, to make eye contact and to interact with other kids. Those things, I think, are the keys to helping him succeed later in school. As for speech and academics, we'll work on that stuff at home and supplement with some extra-curriculars like the swim and music classes we've been taking this summer.

It's funny, I've been fighting for so long to make this whole speech preschool thing happen. But now that I've pretty much decided against it, I really feel this path is the best one for Quinn right now.

And so ... here comes Plan B.

A big (as in important) week for Quinn

Please keep Quinn in your thoughts this week.

Tuesday morning he starts a play group with "normal" kids - something I know he needs, and something I have avoided because it's so hard to sit there and listen to the bragging about how Jimmy is already reading Shakespeare and how Susie has mastered long division. My issue, not Quinn's - and it's high time I get over it.

On Tuesday afternoon he meets a new therapist who has been recommended to us by our doctor and Quinn's speech therapist. She is a PT, but works with kids with sensory processing disorder. I'm happy with the help he's been getting for SPD, but I'm sort of starting to feel like I'm not learning anything at therapy that I'm not already doing at home. So even though I'm sad to leave our current place (owned by a fellow adoptive mom) a change feels right.

On Wednesday we go for Quinn's long-awaited evaluation at a local university-affiliated preschool that specializes in kids with speech issues. I took him for a visit last spring and LOVED the place. Such a high level of teaching and such an impressive place. They were less impressed with Quinn's sky-high energy level, however. The director indicated his lack of ability to sit and listen may render him more than the school can handle. However, she agreed to test him at the end of the summer to give him more time to mature. Amazingly, here we are at the end of the summer - school starts here in mid- August.

This is a big week for Quinn - please think of him, especially at 8:45 a.m. west-coast time Wednesday!!

The boy and the arm

This month has been so busy - and so blisteringly hot - that I totally neglected to post a report from the doctor who operated on Quinn's brachial plexus injury last year.

The good news is that Dr. Waters is very happy with Quinn's progress. He has almost complete "passive" use of his right arm - if someone moves it around for him - which is a good indication he'll have good "active" use as he gets stronger and stronger. We have to have him checked every year (a good excuse for an annual trip to Boston!) and there is always a chance he'll have problems when he has a growth spurt. The biggest challenge is that he continues to favor the right arm quite strongly, so we need to work on that. We worked with Dr. Waters' physical therapist to tweak his twice-daily exercises, and we learned that he'll probably never be able to reach behind his back with his right arm because the tendon that does that is one of the tendons they transferred to give him the ability to lift and rotate his arm. A good trade-off, I think.

So the news was good. But the visit itself? Not so much. We had a longish wait, during which Quinn was quite angelic, playing games happily in the waiting room. But the minute we went into the examination room - the same one he was in that horribly traumatic day last year that his cast was sawed off - he pretty much freaked out. The physical therapist came in right away, and he cried every time she looked at him. He wouldn't let her touch him, he wouldn't do anything she asked and he kept either hiding behind the curtain separating the room into half or hurling himself on the floor. Then he started spinning uncontrollably. Not a good scene. Eventually, the PT gave up and left the room. It wasn't until then that it hit me: Pull out the puzzles. Thankfully, that worked as well as it always does and Quinn sat on the floor happily doing his puzzles, even after Dr. Waters came in. In fact, when he wanted Quinn to lift his arm or reach in a particular direction, he just held up a puzzle piece. Worked like a charm. Surprisingly, Dr. Waters knew a ton about sensory processing disorder and we talked a lot about how to integrate his treatment and his arm exercises. My goodness, how grateful I am for that man.

In short, the visit got better, we learned what we wanted to learn, and we left and had a good rest of the day. But the next morning as were eating breakfast, I noticed that Quinn - who is NEVER cold - was shivering. And he was not eating, which is equally odd for him. I thought maybe he was sick, and then it hit me what was wrong. I bent down, looked right in his eyes and told him he didn't have any doctor's visits that day. Boom. New kid. He started chattering away, ate his breakfast, put on his shoes and announced he was ready to get on with the day. I just felt horrible. I knew that we were finished, but it didn't even dawn on me that he didn't know that. Poor little guy was just plain terrified. Definitely not one of my best moments in parenting...

Potty training and the sensory-seeking kid

I've read over and over that when a child shows interest in the potty or discomfort at having a wet or dirty diaper, it's time to potty-train. As Quinn hasn't been in daycare where he needed to be potty trained, I really haven't worried about, figuring I'd wait for his cue.

But now that I'm learning about Sensory Processing Disorder, I'm realizing that cue may never come. He is PERFECTLY happy to spend the entire day in a wet diaper if I let him. He never complains about the feel, smell, whatever - in fact, he doesn't even seem to notice.

I got a little bench potty a few months ago, and while he loves to drag it all over the house and use it to step up to things he's not supposed to reach, he dislikes sitting on it. So I got him a potty seat that goes on top of the regular toilet seat. That he likes. He drags his potty bench over to it, steps up to sit on the potty and has a lovely time opening the little cubby door next to the toilet, unrolling the toilet paper, asking me to identify the fall foilage on the potpourri envelope. After a while he puts the potpourri back, closes the cubby door and says very cheerfully, "All done potty!" Then he hops down. NOT ONCE has he done anything in the toilet - and it's the same story at school, where he's taken to the potty each morning.

I'd love to hear any ideas, or things that worked for you!!

Sensory processing disorder

Well, I'm a believer. A couple weeks ago I'd never heard of this and now I'm amazed at how much it explains about Quinn's sometimes odd reactions and behaviors. How he runs around on gravel without seeming to notice how sharp it is, how well he tolerates the cold, how he can spin forever and not get dizzy - all those things are related to his sensory processing.

What I've learned is that he is a "sensory seeker," meaning he needs extra sensory input for certain internal senses to kick in. Oddly, when he gets really cranked up if we give him deep or sudden pressure - anything from a long, hard squeeze on his shoulder to literally throwing him onto a huge, cushy dog bed that has been renamed his "crash pad," he calms right down. It's pretty amazing.

The occupational therapist at his school has started working with him - apparently the first session consisted mostly of her putting on a weighted vest (the constant deep pressure helps sensory-seeking kids to concentrate in school) and him commanding, "Take off! Take off!" We're also working with his private OT (the one we see for his post-surgical shoulder therapy) on coming up with a "sensory diet" of exercises we can do for him.

I read "The Out of Sync Child" - which many of you recommended - and was blown away at how perfectly the sensory-seeking examples described Quinn. Now reading "The Out of Sync Child has Fun," which is where we got the idea for the much-loved crash pad.

Still learning, and still kicking myself that we didn't figure this out sooner. I was told that Quinn had been tested for sensory integration issues and showed no sign of it, so anytime a therapist would bring it up I'd tell them he'd already been tested. Now I know he was only tested for being over-sensitive, which he most definitely is not.