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!

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.

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.

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.

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.

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!

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!

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 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.

The coveted spot is Quinn's!

On our quest to find the right preschool fit for Quinn, we keep hearing people sing the praises of a magical teacher named Miss Leticia, who happens to work at a preschool about five minutes from our house. I went to see her in action last fall and agreed the hype was no exaggeration, so I took Quinn for a visit, and she seemed quite able to handle him. Visiting her class was also what convinced me to hold him back a year. We're hopeful that with a year of pre-K, he'll be better able to communicate with his peers and have more self-control so he can sit and follow directions when he needs to.

Today was the school's fall registration kickoff, so I got up before the sun and dashed over there. Ah, first in line! Mercifully, they started registration early so I handed over my forms and check and begged, begged, begged for a slot in Miss Leticia's class. The director opened the book to see if there were any slots left - current students get first dibs - and 16 of the 18 lines were already filled in.

So Quinn is IN! We're so excited and can't wait for August 6, for his next chapter to begin.

The OT speaks (but Quinn, not so much...)

Mary, Quinn's wonderful occupational therapist, visited him at preschool today to get some sense of why he is acting aggressively toward the other kids - we've had some reports of eye-poking and pushing. I figured it was tied to his sensory needs, which seem to be really great when he's around other kids. Mary had a totally different - and totally unexpected - observation: She thinks it ties to his communication challenges. Her theory is that he doesn't know how to tell kids what he wants, so he either shows them with physical force or just plain ignores them. Thinking that through, it makes a lot of sense. He interacts really well with adults, who are patient and help draw out of him what he's trying to say, but very, very little with other kids.

Her idea is to work more intensively on bringing up his verbal communication skills.

I wish we had done this sooner! Quinn does so well at Mary's office that she is seeing him less and less. But today she saw very clearly that he still needs a lot of intervention. That's good for all of us, I think!

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.

Plan C, D - and working on E

I haven't been  blogging of late because I've been driving. And driving. And driving. Like a long-haul trucker.

As of my last post, I had pretty much decided to skip the speech preschool with the principal who pretty clearly didn't want Quinn. Instead, we decided to give his special-ed preschool another shot, with new goals written into his IEP.

Well.

This year's class has a couple of very challenged kids. And Quinn tends to raise or lower himself to the level of whatever is happening around him. So we were looking at a very bad scene, with increasing behavior issues.

So.

I decided to keep my appointment to visit the speech preschool, and I had the same reaction as the first time I visited. I wanted to hate the place. But I loved it. The teacher is amazing, the assistant is fantastic, the kids are engaged. So I pretty much begged and got Quinn in on a trial basis. We'll find out soon whether he'll be able to stay, and at this point it's anybody's guess.

As the principal feared, he is a challenge to the teachers. He stands up during circle time, walks around during center time, doesn't want to sit and look at a book on his own. But... in three weeks, he has gone from speaking sentences only to himself to having actual conversations with us. He has gone from never, ever participating in his special-ed class group activities to taking part. And he has gone from never, ever singing with us at home to happily singing songs with multiple verses. So I'm working closely with the teacher (who is beyond wonderful), we're practicing school activities at home, we're volunteering at the school and we're praying, praying, praying.

In the meantime, I drive Quinn to "Miss Jocabed's school" for 2 1/2 hours in the morning, then pick him up and drive him across town for 2 hours of "Miss Schreiber's school" in the afternoon. Except on Wednesday afternoons, when we alternate between OT for sensory processing disorder and a therapeutic playgroup for speech and sensory issues. Then it's home to practice "centers."

How much do we practice? In the bath last night, Quinn said, "Mama! This is bath center!"