Thursday, May 30, 2019

Early Language Deprivation and Adoption Trauma

Travis had very few communication skills when we first met him.  The adults caring for him communicated with him by poking, prodding, and pointing.  He communicated back with smiles, crying, laughter, and head-banging.  That was about it.  Our first few days with him, he would drool, kick his legs, and even slam his head on the floor, wall, or crib.  When he was happy, he would smile, be silly, and sometimes laugh to the point it was excessive.  These behaviors reduced rapidly and massively within the first few days we had him.  I credit most of this to Ken and to ASL.  When Travis would cry to the point of drooling, Ken would wipe Travis' mouth and sign, "No, you don't need to drool.  Just tell us what you want."  I actually told Ken I felt like it wasn't fair to correct Travis, telling him "no, no" about drooling since he didn't understand anything yet.  Ken rightly pointed out that we'd be speaking English to him if he was hearing.  <throat touch> Right.  Ken and Travis had an immediate "deaf mind" bond.  Ken just "got" Travis in a way I couldn't and Travis could feel it.  I'm so thankful to Ken, the fact that he's deaf, and to ASL for opening many doors to Travis' brain.  We saw rapid strides in language acquisition.  It was so fascinating, we began filming it and posting it on YouTube.

Kenzie and Travis
in our (hot) hotel room in Fuzhou
While the strides were exciting, Travis still had to deal with the effects of language deprivation on top of all the trauma that comes with adoption. (Being relinquished by one's biological family, experiencing abuse and neglect while in government care, being adopted by complete strangers of a new culture and ethnicity.)  Even though we could see Travis' cognitive functions were firmly in place, we also noticed plenty of gaps.  At the end of Kindergarten, we knew he wasn't quite ready to move to first grade, so he stayed in K one more year.  Best decision ever. That put him in class with his brother and a fantastic group of kids and families.  His math skills progressed on par with his peers and he made improvements in school each year.  While he was progressing personally, he was falling further behind his peers when it came to language.  It makes sense considering this:
"Even after decades of language use, later exposure to ASL meant less processing in language brain regions – highlighting that the sign language acquisition window is not longer than spoken language. Generally, delayed acquisition leads to less specialization of language in the brain." ()
This certainly shows up in the classroom.  And his perfectionist tendencies don't help.  He wants to understand everything perfectly the first time.  If he doesn't, he shuts down.  He will look away or just not pay attention at all, saying, "What?" and "I don't understand," or  "I don't know."  He can be socially awkward, as he doesn't always read subtle social cues.  (I'm glad for many of his peers being "deaf blunt," because he responds well to that! He struggles to read cues from kids who have been taught "beat-around-the-bush-politeness").

This year, we are starting a battery of tests.  One screening we completed was the GARS-2 (and 3), which tests to see if he's on the autism spectrum.  We are open to that being a possibility, but after filling out the screening, I highly doubt that will be diagnosed.  The above behavior of not picking up on subtle social cues is the one type of behavior that fits, but not otherwise.  The other screenings that look at his sensorineural differences all seem to fit.  He has grown out or is growing out of a lot of his behaviors, such as fit-throwing or being a horrible sport, which hung on for years, but we still see some behaviors we want to address before he hits middle school.  We feel confident that he will benefit from PT and/or OT next year, in addition to some extra tutoring and specific work on language comprehension and expression.

Always giving bunny ears!
He wanted a selfie with Mom.

There is so much more to share about Travis and how his language has developed over the years as well as how we plan to address the gaps we see as he finishes up fourth grade. We are fully confident that we can close some and nearly close others of these gaps.  When we get his results back from the testing being done, I'll share that here.  It can be a scary process, but also a necessary one.  Finding professional support for a deaf adopted kid is no easy task and we are in the heart of a Deaf Mecca, so imagine how difficult it is outside of cities like Austin or the DC area.  In future posts, I'll share about those challenges as well.

Travis turns 11 this week! I can barely believe it! He's a joy! We are often told how funny the boys are.  Tian is an obvious type of funny, but Travis has an understated humor that is hilarious.  He has deep capacity for love, which we weren't sure about in his early months and even years with us.  He would tell us he loves us often but didn't always show it in traditional ways.  He certainly does now.  Being an uncle and experiencing his nephew living with us from birth to almost one year has unlocked something in his mind, heart, and spirit.  He's shown us a new level of love and caring for all of us over the past year.

I could go on forever about this kid, but will leave it here for today. Thanks for reading and I have committed to do a better job for responding to comments!

Sunday, May 26, 2019

Microtia, Atresia, and Van Gogh

Tian has microtia and atresia of his right ear.  This just means that his right ear never developed fully in utero.

Just after adopting the boys, I wrote "Fixing Our Boys."   (That ASLized video is timeless! Still worth a watch, if you've not seen it.)

This boy has had crooked haircuts for years because
he wants to keep his right ear mostly covered up.
(And because I'm a lousy barber.)
Tian is nearing age 10 and we've had many discussions about his ear.  When he was little, he could not have cared less about the appearance of his ear, but some time in 3rd grade, he started wanting to keep his ear covered because he was getting unwanted attention over it.

Selfishly, I adore his ear.  I've reminded him that his ear helped us identify him in photos and even a video we got of him before we met him in person.  I remember watching that video over 100 times, pausing it at 5 seconds when I could see his right ear.  That's when I knew for sure that it was him.  (It's difficult to identify someone in a video when you've ever only seen still photos of them. Now that he's been my son for 8 years, it's hard to remember not knowing for sure that was him!)

When we first let him know that after he turns 10, we would look into a prosthetic ear, his immediate question was, "Can we make it really big so I have one regular ear and one huge ear?"  <insert laughter>  Umm, the point is to make it so you have two nearly-identical ears, but I get how that would be fun at parties.

Tian is just funny.  Anyone we come across lets us know that.  When we were recently at Dell Children's after he injured his hand, as each new medical professional entered the room, Tian would ask, "Are you here to torture me?"  After the nurse explained how they would medicate him, then pop his joint back into place, she ended with, "Do you have any questions?"  He quickly asked, "What is 6,294 times 351?"

A dental hygienist said she tells a story about Tian everywhere she goes. When he was about 8 years old, she was cleaning his teeth and asked him how he was doing.  He answered, expressionless, "I'm dead inside."  She quipped back, "Ooh, I've never cleaned a zombie's teeth before!" to which he replied, "Yeah, but have you ever cleaned a Chinese boy's teeth?"  That's Tian.

Steve Jobs and Van Gogh
So it was no surprise when his class created a "living wax museum" for school, he chose to be Vincent Van Gogh.  Of course he did.  He wanted to capitalize on the gore, shock value, and humor of that choice.  He made a great Van Gogh!  He originally had a bloody-looking bandage around his head but decided instead to just push his hair back into the hat so his missing ear would be more obvious.  I loved that he didn't mind "showing off" his special ear for this event.  I was hoping his new boldness would stay with him, but after the wax museum, he went back to wanting to keep it covered up.

I love how the younger kids are watching his wax figure come to life!

Tian also loves all things science.  Rocks, bones, solar system, plants, human body. He loves it all.  He's watched multiple surgeries and even childbirth on YouTube.  So a couple of months ago, when we asked if he wanted to see what ear reconstruction surgery looked like, he absolutely did!  Just a couple of minutes into the video, (Warning! It's graphic.) he said, "Yep, I definitely DON'T ever want to do that!"  We are glad because when we looked into it, the risks seemed to far outweigh any potential benefit.  He does want a prosthetic ear.  He'd prefer to have one that slides on and stays on with glue if it will work with the bit of cartilage he has.  Just looking at this website of prosthetics people have gotten after failed reconstruction, I'm glad we ruled out surgery quickly.  

I hope someday he will just be comfortable with his ear the way it is, but I don't live in his body, so it's nice to know he has this option with the technology and materials for prosthetics getting better all the time. 

Friday, May 24, 2019

Almost 3 Years Later...

September '16, when I was blogging about the trip.
The online world has changed a lot since this blog began back in 2010.  With that, especially over the past 3 years, we've changed how our family "lives" online.  We used to be an open book, posting YouTube videos, blogging weekly, and posting a moment-by-moment on facebook.  That began to change a few years ago as the focus of this blog changed, we stopped posting so much on YouTube (ideally, we will start filming again, but editing is time-consuming!), and finally, over the past year, I've dwindled my facebook use by about 99%.  I purged my "friend" list from over 1000 to under 700, most all of those people being deaf community members.  There are reasons for these decisions that I'll get in to later.
November '17 family pics by Amelia K Hamilton
In considering resurrecting the blog, there are a few areas in life that I process better when I write about them.  A major topic the majority of people who still follow this blog are most likely interested in is the language development of the boys.  Over the past 8 years since we adopted them, we've seen a LOT of changes and still experience challenges.  We are in the middle of some testing and language studies that will result in some actionable tasks for our family. Blogging about the process could be fun and useful, hopefully.
December '18 - Actually what life usually looks like.
It's likely that you'll also see blogs about a couple of other topics that center around some major perspective changes I've been working through over the past number of years that, for now, I'll call "deconstruction."  Like a lot of you, I've found myself having to deconstruct so much about the way I think and perceive things.  It's to the point it feels like I need to write it out, even if it's ever just for me.  I'll make sure to tag each blog so you can easily filter out the types of posts you want and don't want to see.