Wednesday, January 1, 2014


Are you following along with Lily's Facebook Page?? That's the best place for updates these days!

I'll do a brief recap of the rest of our year:

In June, Lily started going to summer camp at the Blue Ridge Autism & Achievement Center (BRAAC). This is a private school that provides intensive ABA therapy. Lily LOVES school!
Lily's work station at BRAAC
Lily started going to school there full time in the fall. She is doing SO, SO well there! Her progress with ABA therapy has been absolutely amazing.
Chillin' with Ruby
Lily continues to tolerate little sister Ruby fairly well :). Ruby adores her big sister.
We managed to get a family photo for the first time since Ruby was born, hooray!
Ruby is VERY attached to mommy! She's also crawling and pulling to a stand. It won't be long before I have two walkers on my hands, yikes!
We had a nice, quiet Christmas. We don't travel, haha! We did put a tree up for the first time EVER and kept it up for 4 days. Maybe next year we'll try for a full week :)

Lily also just started taking gymnastics lessons, and she loves it.
We are all ready for Christmas break to be over and school to resume! Lily is getting bored at home, haha! Happy New Year to you all!

Wednesday, June 26, 2013

A New Way To Stay Connected!

Ok guys, it's no secret that I STINK at keeping up with this blog!! So, I'm trying something new. If you're on Facebook, you can "like" Lily's new page:

I will probably update this page daily! I'll still try to do bigger updates on here, but if you want more than you can check us out on Facebook :)

Thursday, April 18, 2013

My Poor, Neglected Blog Readers...

...if any of you still exist, ha! I owe you a big update. As I type this with one hand and hold six-week-old Ruby in the other hand:

Yes, miss Ruby Elaina was born on 3-3-13. So far Lily and Ruby merely coexist, although Lily will sign 'baby' when prompted.

Ruby is a pretty good baby overall. The big challenge is the two of them together.

As for Lily, she is making lots of progress. Our insurance approved her ABA therapy and we've been doing it for about two months. I have to admit, it has been rocking my world. I see almost every behavior differently now. We are constantly redirecting behaviors which has been incredibly exhausting and means someone must be physically by Lily's side at ALL times...but we are seeing progress. Her signing vocabulary has increased to 25 signs. Some maladaptive behaviors have decreased. Her fine motor skills are improving. Today she fed herself a bowl of applesauce without throwing the spoon ONCE and that is HUGE!

Here are two clips from our ABA sessions...the first is Lily signing 'bubbles':

This one is Lily matching colors:

Please keep on praying for us. To be completely honest with you, autism is kicking my butt. It's incredibly exhausting and frustrating and I feel like I have failed most days. Plus add having a newborn on top of that and, well, yeah. Let's just say we are in survival mode around here and will likely remain there for a while. Thanks :)

Wednesday, December 26, 2012

Dual Diagnosis

A new diagnosis is hard, but that's what we've got for Lily: She has been diagnosed with autism, often called a "dual diagnosis" of autism and Down syndrome. For short: DS-ASD.

Autism often presents a bit differently in individuals with Down syndrome than in individuals without DS. Here are some things that we notice in Lily that indicate autism (note that one or some of these things don't necessarily indicate autism, it is the combination of all of them together):

~Sensory issues: Lily is a sensory-seeker. She doesn't respond appropriately to pain. If she falls and bangs her head, she often laughs. She loves tight hugs and being thrown around in the air. She is fearless, and that can be scary at times. She is still very oral and obsessively mouths objects all day long.

~She is picky about food textures. She doesn't like mushy food, such as oatmeal or ice cream. She needs to feel something in her mouth in order to try to swallow it.

~Self-stimulating behaviors ("stimming"): Lily has lots of stimming behaviors. Mouthing objects is a stim for her. She flaps her hands when she is excited, which is a classic autism behavior. She rocks when she is tired or upset and is trying to calm herself. She puts her head down on flat surfaces and rubs her hand on the surface to feel the vibrations. She will put her head down on the floor and bang a toy right next to it to feel the vibrations.

~She will stare at her hands (another classic autism behavior), as this picture illustrates:

~Lack of imitation skills: Lily has not learned to imitate. The ability to imitate is essential to learning.

~Lack of joint attention skills: This is the ability to follow another person as they point out and discuss an object of interest. Again, this skill is essential to learning.

~Apparent lack of receptive language: This just means that it does not appear that Lily understands most of what is said to her. After almost 18 months home, there should be no language barrier. She will occasionally respond to her name, but that is a relatively new skill and she does not do it consistently. I would say she almost never responds to it unless we are at home.

~Lack of expressive language: Although recently Lily has learned to sign 'more' to indicate when she wants something, overall she has very limited attempts at communication. Her language abilities are one of her weakest areas.

~Lily does not point to indicate when she wants something, nor can she follow a point from someone else.

~Zero imaginitive play. All of her play is sensory-seeking.

~Strange obsessions: For example, Lily is obsessed with turning over chairs and small tables. Once she gets something into her head, it is very difficult to redirect her or get her attention on something more appropriate.

~She all but completely ignores other children, except to try to hug them :)

Some things about Lily that are NOT generally associated with autism, and might be attributed to her Down syndrome:

~She is very snuggly and gives great hugs. She seeks out physical affection from adults, but is indiscriminate between us and strangers.

~She recently learned to enjoy peek-a-boo and that is now a sure way to get her to smile and giggle :)

~She does not have a problem with transitions. If another child takes away a toy she is playing with, she just moves on to the next one. She very rarely has meltdowns. In many ways she is very easy-going.

~While she does best with a routine, she is not thrown off by changes in routine.

So what now?? Well, Lily is already getting speech therapy, occupational therapy and physical therapy. We are now pursuing adding ABA (Applied Behavioral Analysis) therapy, which is the 'gold standard' therapy used for children with autism. It teaches imitation and joint attention skills, which are crucial for Lily to learn. Unfortunately it is often a fight to get insurance companies to pay for ABA therapy, so you could please pray for that to go smoothly.

In the meantime, we are just enjoying our sweet, giggly, cuddly wild-child... Lily Anna :)

Sunday, December 2, 2012

Monday, November 12, 2012

Time For An Update!

First things first....

It's A Girl!!!!

Lily is going to have a baby sister :)

The last few weeks Lily has had a communication explosion. She has mastered signing "more" (FINALLY!) and uses it for everything. She will come to me when she wants something and sign "more"...sometimes I have no idea what she wants!! But still, this is a HUGE breakthrough for her: she knows that if she wants something, she can come to me (or Rob) and tell us. 

Last weekend we went to visit the Suttles family. They adopted Alanna from the same orphanage just a few months before we adopted Lily! We joke that Lily and Lanna are former roommates :)  While we were visiting, Cara (Lanna's mom) got a few great pics of Lily:

Love these!

Lily giving Lanna a hug :)

We took Lily to her ENT doctor last week and she is scheduled to have a full sedation on Dec. 7 so they can clean out wax, drain fluid, possibly place tubes if the fluid is really thick, and do an ABR (auditory brainstem response) hearing test. Her behavior-based hearing test in September indicated some mild hearing loss (which we suspected), so we are hoping it's just fluid/wax. I'm also hoping that this will help her speech/language development when she can hear properly.

Wednesday, October 3, 2012

My Friends Are Adopting!

I'm so excited to share this with all you Lily-fans out there...another family from our church is adopting internationally!!! We were the first family from our church to do this, so we are excited to maybe have started a trend :)

Please check out their blog:  They are adopting a girl from Ethiopia and have a *lot* of funds to raise. If you can help them in any way, it would be SOOO appreciated.