Monday, May 30, 2016

A New Development

People consistently think that Blossom is the oldest sister now. She's more out-going socially and is more aware of what is going on around her.

Apple is often perceived as being younger than she is because she's still pretty short compared to her American peers and her expressive language still behind for her age, and she walks with a bit of waddle because of her feet and hips, but once people get to know her, they soon realize she's actually quite mature for her age, out-going and charming. She's very healthy socially and makes little friends easily. She can be a leader and a follower and tends to make appropriate decisions about which is appropriate for the situation.

Blossom and Apple do butt heads constantly now. Blossom pits herself against her little sister all the time. Apple usually comes out on top in verbal sparring. Blossom tries to treat Apple like I treat the three big girls and can't understand that I need to teach an intellectually healthy 4 yr. old in a different way than I teach three much, much older girls with I.D. All three older girls are often stunned when Apple can figure things out that they cannot. Our geneticist warned me about this and wished me luck. By the time she's 6, I'm sure Apple will be developmentally and intellectually ahead of her sisters.

Keeping the two little daycare kids that I still have has been good for Apple. Even though they are younger that she is, the little girl is very advanced verbally so they are on the same level in this area, though my daycare child will pass Apple up verbally in the next 3-6 months. Of course, Apple is much more mature over all.

Balancing everyone's strengths and weaknesses, abilities and disabilities, and allowing the younger ones to exceed the older ones requires very delicate parenting.

The Hardest Thing About It All

The amount of repetition.

The amount I have to repeat to them.

The amount they repeat to me.

And how absolute LITTLE they are able to retain and truly learn. So little progress is made for an absolutely tremendous amount of effort spent. It is so discouraging. By the time they finally do seem to reach a new level, the relief out-weighs the joy.

My oldest child has only about 6 different conversations. They vary a little now and then, but it's the same, day in, day out.

My second oldest child has about 12 different conversations.

My second to youngest tries to converse, but with expressive and receptive issues that are HUGE, she often can't complete what she starts verbally or an invented word pops out that makes it impossible to understand what she's getting at.

None of my three older girls can relate an experience back to me in a logical way. "How was your activity?" I asked after picking them up from youth night at church. "What did you do?" Thus begins a comedy routine (only it's not funny) of them trying to tell what happened. The other night it went just like this...

"I liked it."

me: "What did you like?"

"The movie."

me: "What was it about?"

"Those Indian things."

me: "What?"

"You know, those things you showed us before."

me: "Can you describe it?"

"Indian people things. Those things they live."

me: "Native Americans or people from India?"

"Not from India, from old times."

me: "Teepee?"

"Yes, tee hee."

me: "Teepee."

"Tee Hee."

me: "Tee Pee, with a p."

"Tee PEE."

me: "What about the teepee?"

"The other one knocked the door."

me: "What other one?"

"The other one."

me: "There were two teepees?"

"Yes. No, the Noah thing."

me: "The ark?"

"Yes, the art."

me: "arK"

"ART."

me: "arK, with a K."

"ArK."


What it seems happened after listening to two of the girls describe the video this way but each describing a different scene, and from what I saw at the end of the video, is this...

The video took place at church girls' camp. The girls set up teepees to sleep in. Some girls followed the instructions and some didn't. It began to rain and the teepees that weren't set up right began to leak, sag and collapse. Some girls ran to other teepees and asked to share and some girls (the other ones) ran to alert the leaders whose cabin looked like Noah's Ark, hence they had to "knock the door" or, in proper grammar, knock on the door.

Saturday, May 28, 2016

Autism

For quite some time now I've suspected that Sissy was autistic. I even mentioned it in a blog post last November. However, I didn't know much about autism and assumed that because she liked going to church and attending the youth group activities that she must not be autistic because I mistakenly thought that people with autism didn't like to be around people, even though she didn't function normally in the group. Then, after being at one of our specialist's appointments, he asked her to return to the waiting room, turned to me and said, "She's not made any progress at all in 6 months, I'm going to consult with our autism specialist."

I received an evaluation in the mail to fill out about Sissy's behavior traits and she was positive for everything except two traits. We've now been referred to Kaiser's Autism Spectrum Disorder Clinic three hours away in San Jose so we can get a definite diagnosis. I also spoke with our pediatrician about autism since her son is severely autistic and she explained to me that autism is a developmental disorder, not a mental health disorder. I knew it wasn't a mental health disorder, but I didn't know it was considered a developmental disorder.

Here is a list I found online from the National Institute of Health that describes some of the characteristics of signs and symptoms of autism and an explanation of the two categories of behaviors, Sissy's behaviors involve the Social Communication/Interaction type:

Not all people with ASD will show all of these behaviors, but most will show several. There are two main types of behaviors: “restricted / repetitive behaviors” and “social communication / interaction behaviors.”

1. Getting upset by a slight change in a routine or being placed in a new or overly stimulating setting

2. Making little or inconsistent eye contact

3. Having a tendency to look at and listen to other people less often

4. Rarely sharing enjoyment of objects or activities by pointing or showing things to others

5. Responding in an unusual way when others show anger, distress, or affection

6. Failing to, or being slow to, respond to someone calling their name or other verbal attempts to gain attention

7. Having difficulties with the back and forth of conversations

8. Often talking at length about a favorite subject without noticing that others are not interested or without giving others a chance to respond

9. Repeating words or phrases that they hear, a behavior called echolalia

10. Using words that seem odd, out of place, or have a special meaning known only to those familiar with that person’s way of communicating

11. Having facial expressions, movements, and gestures that do not match what is being said

12. Having an unusual tone of voice that may sound sing-song or flat and robot-like

13. Having trouble understanding another person’s point of view or being unable to predict or understand other people’s actions.


Sissy strongly exhibits ALL except #8, which she exhibits, but just a little. What's not listed here, but is also very telling, is how Sissy DOES respond/behave.

Looking at this list, anyone in the adoption community who attended classes at their agency or read the adoption books will know that many of these symptoms are on the same list as that of children who have been raised in orphanages. The difference is that healthy kids start to catch up, or at least learn enough to be able to safely function, even if they never quite reach what we'd consider normal, and Sissy hasn't been able to do that.

I'm so relieved and glad that we are finally finding the right answers to help her.

Thursday, May 26, 2016

Miracle Cancelled, A New Diagnosis

It was too good to be true. Yes, Apple's skull surgery has been postponed, but a hip x-ray taken last week has revealed that Apple has bi-lateral hip dysplasia. It should have been caught by the doctors in China at her birth, by the medical exam in Guangzhou, by our Kaiser pediatrician and by the orthopedic specialist at Shriner's, but no, not one of them found it despite their years of medical school and experience. I did, but I thought it was something else, and even now, that something else could be part of the problem, but at least my concerns made the neurologist at last week's clinic visit order a hip x-ray.

I'm not taking the news well. I'd rather have the skull surgery because once it's done, it's over and the recovery is a few weeks and it's fixed. With hips, we're likely looking at spica casts and surgeries followed by more surgeries throughout her lifetime and pain and arthritis.

To make matters worse, Kaiser doesn't have a specialist in our area. We have to travel three hours - yet again - each way.

On top of this, Jie Jie has been having hygiene issues that are driving me nuts! She just doesn't see any value in keeping herself clean. Bathing, brushing teeth, washing hands and face. She'd never do it unless I stand over her. She even pretends to do it, lies about having done it, and says she doesn't know why she doesn't do it. It's maddening!

And on top of that, Sissy's issues are escalating. Today was seriously hard! Specialists are finally mentioning the possibility of autism. I suspected something like that from the beginning, but last November I actually began researching it more thoroughly and believe it would be an accurate diagnosis. Hopefully, I'll find out soon and be able to get the right services lined up.

Blossom is doing well, thankfully. She seems to be coming out of the most hormonal time of puberty and calming down and actually maturing more emotionally.

Wednesday, May 25, 2016

Baby Toad Migration

Rain means toads and frogs and when they grow out of the tadpole stage, they leave the ponds. Thousands of tiny toads appeared everywhere in just one day, crossing roads, hanging out by my back door to eat all the bugs, filling my swimming pool. I had 200 or so in my pool the first day. I got them all out and released them in a safe place then built and exit ramp for them so they could get back out and continue on their way. The next day I removed about 50 and after that just a few per day. I'm happy to say none died in my pool. Each toad will eat tons of mosquitos and we need that, so the more toads the better.

Friday, May 20, 2016

April 2016 Round-up

I've been fostering two little kittens for a couple months. I got them when they were 2 weeks old and they just left three days ago to get spayed and neutered and to been on "display" at the program's adoption site, which is the biggest and best that I've ever seen. While they were being bottle-fed, they came everywhere with me, even to the girl's gymnastics place.


Sissy passed the first level of gymnastics and received a ribbon. The other two big girls began at a higher level and will pass the skills sheet soon and get their first ribbons, too.


This is the trailer I fell off of last month. I'm still in pain, but not all the time now. It sure doesn't look like it's far from the top to the ground. This picture was taken about 15 minutes after the fall when I started feeling strange but still didn't realize how badly I was hurt.


My Firefighter and I went to a wedding and had a good time. It was also fun going shopping with My Firefighter and picking out his new duds. If you've read my blog from the beginning you'll know I design children's clothing, but I also really love men's fashion, too.

March 2016 Round-up

March 28 was Jie Jie's Family Day. It's been five years now that she's been home. Seems like the blink of an eye and just yesterday I was on my way to China to adopt her.

We haven't been to the park much because Apple just wasn't able to safely get around for a long time and there wasn't much she could do because of her little hands that can't grip. Now, however, she's learned to compensate for her hands and she doesn't fall down very often any more so she's loving the park. She was very scared of the swing for a long time, but slowly got used to it and now loves it. She's proud that she can swing now, too, and not be scared.

At the beginning of March, we travelled up past Sacramento into the mountains to visit My Firefighter's family. It started to snow and after barely an hour of huge flakes falling, we scrambled like crazy to leave his sister's place up in the mountains and get back to our hotel at a lower elevation since I don't have snow chains for my van.

Easter was low-key. The girls enjoyed it and were happy.

Awesome Most Miraculous News!


We spent the day before yesterday in the Bay Area. Apple had her craniofacial clinic day. That's when we sit in a room and 11 specialists take turns coming in, one after another, then, at the end of the day after we leave, they meet and discuss each child and make a cohesive plan for their care.

Our great news is that Apple does NOT need frontal orbital advancement surgery at this time and probably not until she is 16 years old or so, if at all! This surgery would remove her skull from the top half of her eye sockets and her entire forehead, remodel it, then reattach it. There are risks. The entire frontal lobe of her brain would be exposed during the surgery, but still covered by the dura mater. Unless they nick it or tear it by accident. There's always the risk of infection, which we've experienced before with MRSA. And, the part I was really worried about, anesthesia emergence complications and allergy reactions, things we've also experienced.

I cried, I was so happy and relieved.

Afterward, we headed into San Francisco to the Academy of Science. When we lived in the Bay Area, we went to the Academy frequently. It was neat watching Apple see it for the first time. We saw the new planetarium show, narrated by George Takei, which was very well done. We made a super quick stop at Ocean Beach, an even quicker stop at IKEA to look at how they design their kitchen cabinets, ate dinner, then headed back home.




We left in the morning at 6am and arrived home just after midnight. It's a long haul, but with the good news about Apple not needing that surgery, I can't say I minded it this time.