The terrible terrors

Today we took Quinn to a sensory movie - a fantastic offering by AMC Theatres, where they show a movie once a month without previews, with the lights dim but not dark, and with the sound turned down to a reasonable volume.

Last time we went, we saw "Frozen," which kept every kid in the place mesmerized. Today's movie was "Muppets: Most Wanted," which was a little slow in parts and had the kids squirmy and a little bored - not great for a room full of kiddos on the spectrum.

Quinn stood up and down and up and down and kept wanting to move from chair to chair to chair. Directly in front on us was a pre-teen boy who flapped his hands constantly unless he was fiddling with a slinky he held up to eyes. Down in front was an older teen who laughed slowly and loudly at random moments. To the left was an older boy who would tantrum each time he dropped his sippy cup or his mom threatened to take away his crackers.

On one level, none of this worried me a bit. One of the great gifts of Quinn's autism is that I am totally comfortable around kids whose behavior would have made the pre-mom me very, very uncomfortable.

But on another, the whole experience was more than a little terrifying. Quinn is very high-functioning and is growing and advancing day by day. But will it last? Will he hit a peak? Will his habit of flailing his body around when he's bored turn into the kind of full-on stimming that was so evident today? Will he grow up to be someone who happens to have autism or someone who is defined by it?

Some days I am full of optimism about this little boy who I love so very deeply. And some days I am gripped by an unrelenting chorus of "what if..." playing in my head.

Most days, it's a little of both.

Check out this post-adoption support group on Facebook

I'm very glad to see this new Facebook group. If you're a new or experienced adoptive parent, consider joining to ask questions or share your wisdom!

The full alphabet soup

ASD. ADHD. SPD. PDD.

He's got them all.

We knew from Day 1 that Quinn had some characteristics of autism. But his therapists felt like the behaviors were brought on by a lack of stimulation in his early months and that they likely would pass with time. Plus, we were doing all the therapies he would receive if he had autism, so an actual diagnosis didn't seem necessary.

Then our insurance company decided it didn't want to keep paying for therapy for a kid who wasn't on the autism spectrum. So, diagnosis here we come.

Getting the testing was no easy feat. It costs about $1,000 and is not covered by insurance. And the only developmental pediatrician in our city of 1 million people who does it has a wait of 19 months.  So we headed up to Phoenix - only a six-month wait - for two days of testing.

The process was actually pretty interesting. We filled out reams of questionnaires and literally discussed or disagreed over every answer. Does Quinn initiate play with other kids? I'd start to mark "rarely, if ever" and Tom would say, "That's not true. He does it at the park all the time." Argue, argue, argue. Then we'd compromise on an answer.

While we were doing that, the developmental psychologist gave Quinn and IQ test and then about six different tests. In some he solved puzzles, in some she watched him play with toys, in some she asked him questions.

Then the next day, I went back for two hours of answering questions, mostly about the paperwork we had filled out the previous day.

A week later we went back for the results. High-normal to high IQ, ADHD (another test will determine the severity) and autism. Not really surprising, nothing really changes except now his therapy will be covered. But I was surprised that hearing the diagnosis set me to thinking, and worry, about Quinn's future. Will he be able to make it in school? Will he be able to go to college? Will he be able to live on his own?

Now we begin the long and difficult road of trying to point all those answers to yes.

The long and somewhat desperate search for the right kindergarten fit

Holy cow, what an ordeal it has been. But we finally chose a kindergarten for Quinn. We visited public schools, private schools, charter schools, a Chinese immersion school, and ultimately we decided to keep him in the same school he attended last year, which goes through kindergarten.

It is not as academically rigorous as others, but the teacher has taught kinder at that school for 29 years. She is unflappable and a strong believer in structure in the classroom, both of which are ideal for Quinn. And best of all, at the parents' meeting last spring she said her goal was not for kids to leave her class reading or writing above grade level, but that by the end of the year they all love to learn. Sold.

We're a week in now, and so far, so good. Ms. Kathy seems unfazed by the whirlwind that is Quinn. And her rigid classroom structure has kept him from spinning out of control as has been the case so many times in the past. We're hopeful, but also a bit nervous - in his last two schools, it was in Week 3 that it all went south.

Please join us in holding your breath and hoping for the best.

Up next, the search for the ideal first-grade classroom...

No, you're not alone

I keep connecting with adoptive parents who are struggling with their kids' delays, trauma symptoms attachment issues — and they think they're the only one. So much of the adoption literature, listservs and blogosphere acknowledge that there may be issues early on, but indicate they'll be short-lived and easy to deal with. And so many agencies help would-be parents choose minor, correctable special needs without making sure they understand that lack of stimulation, neglect or abuse in those first few months or years can cause pervasive and lasting challenges for kids.

In the last week two parents I've connected with have asked me to return to blogging, and to sharing the truth about adopting a kiddo who does not catch up as we're led to expect.

So I've decided to give it a try. I hope you'll come along with me.

Books about boys - help me build my list!

A mom in one of my Yahoos groups asked about adoption books for boys. They are hard to find, but not impossible. And there are plenty of gender-neutral choices out there.

Here are my favorites:

A Mother for Choco, by Keiko Kasza
My all-time favorite adoption book. It's the story of a bird - a BOY bird! - who is lonely because he has no mom but everyone he asks says they can't be his mom because they don't look alike. Finally a bear asks him to be her son and says their looks don't matter because she can give him hugs and dance with him and feed him pie. Lovely, lovely story with funny illustrations that always make kids laugh.

Through Moon and Stars and Night Skies, By Ann TurnerAn oldie but goodie. And it's about A BOY!! It follows his journey to his new family and features him telling his own story, which is super sweet. Don't miss the illustration of him being driven home - basically sitting on a basket on the front seat!! My son noticed that one right away. :-)

Sesame Street's We're Different, We're the Same AND I Don't Have Your Eyes by Carrie Kitze
Both feature boys and girls and have the same great thread - we may look different on the outside, but we share traits and we share love.

I Am a T. Rex from the Dinosaur Train TV show
Buddy the T. Rex is adopted into a family of Pterandons. From the PBS Kids show of the same name, this is Buddy's birth story.

Let's Talk About It: Adoption by Fred Rogers.Yes, a Mister Rogers book. And other than the fashions and hairstyles, it's shockingly current. It features all sorts of families and talks about why kids are adopted. Deals very sensitively with some thorny issues surrounding adoption.

The Family Book by Todd ParrVery simple and geared toward little kids, but it's so fun and colorful that kids much older still enjoy it. It just simply shows ALL kinds of families., from adoptive to single-parent to gay parents to inter-racial. Also some funny stuff mixed in like families that all have the same hairstyle - even the pets.

Disney's TarzanThe classic tale of the by raised by gorillas. Just make sure you read the copy before you choose one. Some of them have some not so great wording, like 'real mother.'

The Red Thread: An Adoption Fairy Tale by Grace LinA king and queen go in search of the red thread pulling at their hearts and end up finding a baby in China. The last page shows the baby to be a girl, but until then it's pretty gender-neutral.

Tell Me Again About the Night I Was Born by Jamie Lee CurtisMy second-favorite adoption book. A little girl tells the story of her adoption - but there is nothing "girly" about it. Only the cover and the last page shows a girl. And all the text could be about a boy or a girl. Sample page: "Tell me again abut the first night you were my daddy and you told my about baseball being the perfect game, like your daddy told you." At first I thought this book didn't apply to us because it's about a domestic adoption at birth, but now this is exactly how my son tells his own adoption story. "Mama, were you so excited to meet me that you wore the wrong color socks?" "Did I poop for the first time at the Temple of Heaven?" I LOVE this book.

Letter of Love from China by Bonnie CuzzolinoAgain, there's a girl on the cover and the last page, but that's it. This book is really wonderful as it's written by a birth mother in China. It's very sensitively done and assuring to a child, at least in my opinion. And as an added bonus, there's something so soothing about the word choice and syntax that - just like Goodnight Moon used to do - it puts my son straight to sleep.

Do you have any to add to my list???

At long last, a connection

Until now, guys like this have been Quinn's favorite friends

Even at five years and four months, Quinn has still been stuck in the parallel play phase. He doesn't mind kids, but he shows no real interest in them, either.

This summer we had him in two social skills groups, and they seemed to make a bit of difference. We also tried some play dates, which mostly involved him playing with other kids' toys - or talking to their moms.

But lately he's been showing some interest in other kids. Unfortunately, he's showing it by stealing their toys and screaming at them to chase him as he runs away. But hey, we moms of special-needs kids take progress where we find it. And to me, this is progress. Even so, Quinn and I have talked quite a bit in the last week about other ways to get kids to play. He can say, "Can I play with that when you're done with it?" or "Can I play with you?" or "Would you like to play tag?"

And then... a massive leap forward.

After school one day last week, Quinn walked up to a little girl sitting on a wall and asked her, "What are you doing?" When she didn't answer he asked again. She still didn't answer, so he got on the wall too and started sliding away from her - and she followed him! I told him to tell her his name, which he did, and they started little-kid chatting away. I was just about crying I was so happy.

Then yesterday after Chinese school, he walked up to a little girl he knows (he's gone to her house to play with her toys!) and said, "Let's play tag!" She was too shy to respond, but her little brother wasn't, and pretty soon there was a rowdy game of three-way tag going on around us.

So many times I've watched Quinn play on his own as friendships form all around him and wondered if he'd ever connect. And now, at last, I see signs that he's doing just that.

It's a good day.

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.

What to Expect When You're... Comparing Your Kid to Others

Quinn will turn 5 next week (!!). In anticipation, I got an email from Fisher-Price suggesting some things my 5-year-old might like based on 11 ways that they're sure he plays now.

I chucked the "What to Expect in the Toddler Years" book long ago, about the time I forced myself to stop watching other kids at the playground and noticing all the things they were doing that Quinn wasn't.

But it's been a while. So I read the 11 things he's obviously doing, according to Fisher-Price. And you know what? He is doing five of them. All things considered, I see that as a triumph -- both for Quinn, who for so long was not meeting practically any milestones no matter how basic, and for me, who used to worry myself silly with silly comparisons.

I tell people all the time that I've come to believe Quinn is on HIS schedule, and no one else's. I'm glad to prove to myself that I actually believe it!

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.

DTD = Quinn

Wow. Someone posted this in the Yahoo group for Quinn's orphanage, and it just about knocked me out of my chair.

Scroll down to the stuff about Developmental Trauma Disorder. Quinn looks so much  like at ADHD kid in so many ways, but I've never believed that he is. I guess I'm not alone...

This article isn't exactly light reading, but if you adopted internationally, you might see some stuff you recognize!

Are special needs funny?

Today I saw an adoptive mom's advertisement for t-shirts she's selling. One said something about how it wouldn't be terrible to have a kid with special needs, it would be terrible to raise a kid who was cruel to people with special needs. I don't love the implication that it is inherently unwelcome to have a kid with special needs, but I certainly appreciate the sentiment behind the shirt.

But another shirt said, "Ask me about my attention deficit disorder" and then listed a bunch of random thoughts, ending with, "hi." Um, isn't making fun of a very challenging special need just a little bit cruel?

I sent an email to the mom saying the ADD shirt really made me cringe, and she responded that humor is what parents of SN kids need and that the shirt is her best seller among her clients, who are loving Christians with senses of humor. She also said the creator of the shirt was her 11-year-old son, who has ADD.

I'm not comforted. If her son wants to laugh at his own challenges, awesome. But do the people who see such a shirt recognize and admire a kid who is laughing at his own challenges? Or do they see such a message as sanctioning their own prejudices? I fear it's the latter.

Humor? Absolutely! At our kids' expense? Never.

That's my take. What do you think?

Good vibes for my little orator, please...

About six weeks ago, when Quinn's Chinese school teacher announced that all her students would participate in the school's annual speech competition, my stomach did a little lurch. Speech competition? As in, sentences? Spoken on demand? Quinn?

On top of the idea seeming a little far-fetched, the speech itself seemed crazy long:
I am Jianrong.
I am four years old.
I am a boy.
I know how to count.
(Then he counts to 10.)

This child is FOUR YEARS OLD! He spoke his first word at 26 month, strung together his first mangled sentence at 3, is so delayed in his speech that he qualifies for special education services, is still considerably short of what you could call conversational.

And yet.

Tomorrow is the speech competition.

Quinn knows his speech by heart and willingly recites it on command. His Mandarin is clear and beautiful.

Truly, I am in awe of this child.

I don't know what will happen when he gets up on that stage, looks into the crowded audience and has a microphone shoved in his face. But I know that, no matter what happens up there, one mama, one baba and one nana in the crowd will be fiercely trying to hold the cameras steady through the tears.

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.

He's a big boy now!

Quinn's brachial plexus injury has been successfully repaired, but because of the tendon transfer surgery he lost the ability to reach behind his back (that tendon was moved to give him the more critical motions of lifting and rotating his arm). He has very normal movement in most every way, but dressing has been an ongoing challenge. It's very hard for him to pull pants on and off, he's unable to navigate snaps and buttons and until very recently he wouldn't even try to pull a shirt on or off.

Through much encouragement and hard work, he has learned to use his left arm to reach around his body and straighten out his waist band. And although he always ask for help putting on his underpants and pants, I've noticed that at school he seems miraculously able to do it himself. Plus, in the last couple of weeks he has started pulling off his own shirt at night.

So this morning, I laid out his clothes on his bed and told him to get himself dressed and come out when he was ready for breakfast. Then Tom and I stood in the kitchen, waiting and listening. Crickets. But after a while, out came Quinn - fully dressed in rocket ship underpants, blue sweats and a striped blue shirt. ALL BY HIMSELF.

We were so proud and made a big, big fuss about what a big, big boy he was. The little negotiator, sensing an opportunity, made a suggestion: "You should get a prize!" Shrewd, that one.

An almost unsolicited "I love you"

I have no doubt that Quinn loves me like mad. But the darn kid just will not say it on his own. If I tell him I love him, he says the same back to me. But he's never said it without prompting.

Well, we're inching closer. Last night he was sitting on my lap after dinner and smiled at his Baba. I said, "Quinn, do you love your baba?" He said yes, and then snuggled into me and said, "You love your mama." Quinn still has some pronoun confusion and refers to himself as 'you.' So add up all those elements, and, hey, pretty good, kiddo! I'll take it!

The most awesome kid gift ever

I never would have believed it, but... it's... a ...

Chia Pet!

My aunt game Quinn one for Christmas and he loves this thing like he's never loved anything. He helped me mix up the seeds and stick them on the puppy, then he checked it every day until it started sprouting. And, oh my, what a day that was.


He keeps it watered, talks to it daily and gave it a very original name: Chia.

He also likes to look at it (and everything else, including his fingers) from veeeeeeeerrrrrry close up, thanks to a magnifying glass from his godfather.