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!

Relucant brusher in your life?

Quinn does not hate to brush his teeth like many kids with sensory issues, but he certainly doesn't love it. And he won't do it himself.

But that changed instantly when my husband downloaded the Disney Magic Timer app, which is miraculously free at the App Store. Kiddos choose a Disney or Marvel character (or scan an Oral B product from one of those companies), then they get to watch that character slowly appear on the screen over two minutes while they brush.

Quinn literally runs into the bathroom after breakfast and dinner shrieking, "I've gotta brush!" Amazing. Especially if you have a reluctant brusher in the house, I can't recommend it highly enough.

Just-right space

The awesome news is that Quinn is actively trying to make friends. The not-so-awesome news is that his friend-making skills are not as sharp as they could be. He has some real challenges staying in his own space, and has taken to following kids around with about an inch between him and the other kid. Shockingly, this doesn't go over well.

After his kindergarten teacher asked us for some ideas to help deal with this, his fantastic social-skills teacher taught me about just-right space and suggested I make him a social story book since he's such a visual kid. So I grabbed some photo time with Quinn and his good buddy Andrew (also a sensory seeker who is just fine with Quinn invading his personal space) and created my very first social story book!

Read it here.

 

My worst fear for Quinn at school

A Tucson teacher resigned after Duct-taping a student to her chair because she kept getting out of her seat (hmmm - ADHD? autism? sensory processing disorder?) prompting this retired teacher to write a letter to the editor of my hometown newspaper sympathizing WITH THE TEACHER and proclaiming that such troublemakers should get the hell out of the classroom. No acknowledgment that this could be anything other than a disciplinary issue. I live in absolute terror that Quinn will end up with a teacher like this.

Read the letter here.

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.

No, this didn't happen in 1950. It was today. In my home school district.

Special-needs kids were left outside an elementary school in the heat for two hours after their bus broke down. Why weren't they allowed inside? School officials feared the SN kids would disturb the NSN kids enjoying an air-conditioned after-school program inside.

Read it here. Unbelievable.

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.

Happy New Year from our family to yours!

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???

Happy Halloween!

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.

Swimmin' Quinny

He may still get his pronouns mixed up, but at summer's end this kiddo can now go hold his breath and go underwater. Just enough knowledge to be a danger to himself, his swim teacher says. So one last cute video before the pool goes away for the season:

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!

Has anyone tried 23andMe?

I've seen some posts on Quinn's orphanage listserv recently about families that have done DNA testing on their kids through this company. The results sound incredibly detailed, and have been hugely informative and comforting to the teens who have gotten them. One girl from his orphanage turned out to be Thai and Vietnamese, only slightly Chinese, and another turned out to be of mixed heritage as well.

Quinn has brownish-black hair and some kinda westernized features, so I've always wondered if he is fully Chinese or of a mixed heritage. I think I'll take a swab and find out.

The report also includes some medical information, although I'm not clear on exactly what that means, and the company can connect you with blood relatives who have signed up.

Has anyone tried this? If so, what did you think of the results? Did you sign up for the monthly service or pay all at once?

Two-year post surgical checkup

We're in Boston for our annual visit with Dr. Peter Waters, who did a truly masterful job on the tendon transfer surgery that corrected Quinn's brachial plexus injury two years ago. Last year's visit was a nightmare, with Quinn uncharacteristically crying, hiding behind the curtain, spinning wildly (well, that one wasn't so uncharacteristic...) and refusing to be touched. Only the following day did his clueless parents realize that we had not prepared him for the visit, and the poor boy was terrified we were in town for another surgery. Duh.

So this year, LOTS of preparation. And a much better result, hallelujah. He raised his arms when he was supposed to, reached for the toy monkey when he was supposed to and generally did what they wanted him to do. And this was through three different visits - one with the OT, one with a fellow of Dr. Waters and one with Dr. Waters himself. We were very proud of our brave little patient. Despite all our preparation, through, he was quiet and solemn all day. Some fears are just hard to shake, I guess.

As for the doctor's report, he said Quinn's surgery was about as successful as it could have been. His range of motion and use of his arm (which was almost not useable pre-surgery) is at the top of what's possible. His only real deficit is strength, so the OT gave us some good ideas, like lifting balls overhead, having him hand heavy things up to me when we're emptying the dishwasher, etc.

Unfortunately, Dr. Waters said Quinn is doing so well he was lifting any limitations he had placed on him, meaning the ban on football evaporated before my eyes. But when he was the horror on my face, he said he would reinstate the ban just for me and would happily let me blame him for it. Whew!

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!