Saturday, November 28, 2015

Li Xiaoshuang Gymnastic School

I didn't know that there is a pervasive cultural belief that if children are raised by their parents, they will turn out lazy and that they need to face hardship to develop fully. This is very hard to watch:

Li Xiaoshuang Gymnastic School

Victim of a Crime

There have been many things happening in my life lately, things that need to remain private and others that I'm going to share here for the sake of all the other families struggling with the older children that they've adopted, but who have decided to stick it out as their parents.

Sissy has an appointment with a specialist early this week who will put in motion a series of further evaluations with more specialists to see what is going on, if they can. I've been trying to get her evaluated by our regional center, too, but they keep asking me for more and more paperwork and it's swamping me.

She has ceased to function unless it serves HER. Her entire world revolves around her like a 3 or 4 yr. old, whose entire existence is self-centered.

During this process of what I call "taking the cane away from the blind girl," it has become increasingly obvious that Sissy has very low functioning ability. Oh, her body can function, her hands can do chores, but she doesn't know the reasons why we do the things we do beyond the most basic level. She's a complete copycat. But the tricky part is that she's a memorizer. She's memorized things that mask her deficiencies so she appears to know. Why do we clean the bathrooms? Because they are dirty. Yes, that's right. But if we don't clean the bathrooms on Saturday because of a family outing or other activity, she becomes fixated on it, and the minute she can, even if it's a few minutes before bed time, she'll grab the cleaning supplies and think we still have the clean the bathrooms because it's Saturday. She'll say, "We clean the bathrooms because they are dirty," but her brain is telling her, "We clean the bathrooms because it's Saturday and that's what we do on Saturday." Just like she'll say, "We change a diaper because the baby is pee," (her exact words), but her brain says, "Mommy said I need to change the diaper," so she changes it even if it's dry.

I have often wondered why she latched so readily onto Jie Jie, 5 years younger, and even now still follows her, like a puppy, and never assumes the lead in anything. Well, it's because Jie Jie has been Sissy's cane, her guide through life. Even Blossom has had a main role in keeping Sissy functioning. Part of what's added to Sissy's issues is that Blossom is doing very well right now and has passed Sissy up in reading and writing and reading comprehension and Sissy absolutely cannot stand this because she can no longer fake keeping up. She has not realized what she's been doing to get through life. It's a coping mechanism, highly developed, and she's completely unconscious of this adaptation. It's worked for her until now and it's all she knows. In China, her cane was her best friend and room mate who now lives in Montana.

Sissy is now under my eye completely. She steals, lies, snoops, destroys. She does this during the night. Many things have gone missing over the months, documents, my MP3 player, little things, big things. We've been here before. Our therapist helped me tremendously when this came to light the first time, 3 years go. I started spying on her at odd times and have caught her. She can't even stay on a chair while I use the bathroom. I sneak back into the room and she's up and across the room rummaging through my papers. She's becoming paranoid and trying to find anything pertaining to her since she's now completely lost and can't figure out what's going on. It doesn't help when she's praised at speech therapy for nothing other than to keep her from feeling bad since she's failed every single exercise they've tried until it's dumbed down and they've cued her to get something out of her. I can't dumb down our life to that extent and praise her for nothing. I am learning other techniques that will help her, but it's slow going until we have a definitive diagnosis and my primary goal at the moment is to keep us all safe.

So, what it boils down to is that Sissy must stay within my sight at ALL times. She cannot be trusted around the other girls. She has "divided and conquered" so they lie to me to cover for her, at least Jie Jie (who also has cognitive issues of her own). Blossom is starting to feel loyal to me the more successful she is - thank heavens!

Enter The Crime! Yesterday, I purchased a security camera and tablet so that I can monitor Sissy without dragging her around the house with me. At the second store we stopped into, someone swiped the tablet out of our shopping bag, which was hanging on Apple's stroller. For all I know, Sissy swiped it and hid it, but the store doesn't have access to their security video feed so I'll never know for sure. I realize that sounds mean of me, but she's done things like this before. It's part of her normal, unfortunately. The tablet was a Black Friday special deal at only $28. I went to 5 other similar stores and they were all sold out. The time, energy and money Sissy is now costing is becoming crippling to my family. Thankfully, help is coming soon as we meet with all the specialists I am lining up.

With Sissy's language development delay, talking doesn't do a single bit of good. She doesn't understand. She knows what the individual words mean, to an extent, but can't comprehend the meaning when they are put together in to conversation.

We could use your prayers at this time. I'm dealing with all of this completely on my own. I will say this: Moving 2.5 years ago was the worse decision I ever made in my entire life. It turned out that everyone has lied to me about the most significant things I was basing my decisions on, from the conditions of my kids to the condition of my new house and ever so much more.

The is another mom who needs prayers, too. Please pray for THIS MOM since she is in the untenable position of having to decide whether or not to disrupt her brand new adoption in the face of unexpected things revealed about her new daughter while still in China.

Thursday, November 26, 2015

Happy Thanksgiving

I am thankful that I am still functioning and sane. Really. Truly. Not kidding. You cannot imagine what events have unfolded in my life recently.

In my church we are assigned Home Teachers. These are priesthood-holding men who visit once a month to make sure we are doing okay and that our needs are being met and, if not, to let those who can help know that it's needed. My Home Teacher gave me a prayer/poem by Helen Steiner Rice and I read it today at the Thanksgiving table, most grateful that the poem did NOT describe me. It basically mentions how we forget to give thanks to God for the small things and only mention the big things in life. Well, that's not me. I am so very, very, very grateful for the small things in life because those are what have kept me going. Here's a partial list of what I'm thankful for:

Last night, at a restaurant, a special kindness shown to me by B. You know who you are! I thanked God for that last night and again today at our Thanksgiving table when I prayed. And I asked His comforting blessing over you, too.

God's love for me and the ways He's manifested it lately, big and small. So miraculous!

I'm thankful for our regional center case worker whose help is bringing reason and sanity to my existence and who told me that I was trying to do the impossible. I really didn't know it. I'd have died trying.

I'm grateful for Blossom's public school experience because it showed me that I wasn't failing. And bringing Blossom back to homeschool after that experience brought her heart and trust fully to me for the very first time and forever.

I'm thankful for all the strangers I met last Thursday evening at a community holiday event, whose kind and caring words of encouragement, love and support touched my heart and gave me comfort at a moment in time when I most needed it.

I'm thankful for my oldest children who are showing me how strong I am - so much stronger than I ever imagined I could be.

I'm thankful for my littlest girl. I am her everything! Love flows out of her at me immeasurably and I'm drinking in every drop, thankful for such a precious, precious being in my life. When she looks up at me and slips her hand into mine just because she wants to, my heart explodes with love and joy. I love that she freely accepts my love for her without question, without trauma, without doubt.

I'm thankful for my cats, who love me and accept my love in return.

I'm thankful for all the rain we've had lately.

I'm thankful for all the other things I cannot list here right now.

Our brunch this morning, left-over birthday cake and veggies. Blossom saw me serving up the veggies and said, "I thought that was for Thanksgiving." I said, "Well, today IS Thanksgiving, isn't it?" I suppose it was a strange combo, though.

Low-key this year: ham, sweet potato pie, green bean casserole and dessert. This mama wasn't going to spend all day cooking. No way. But I did make the glaze on the ham from scratch and I did peel and cook the yams for the sweet potato pie - in the pressure cooker, all of 4 minutes.

The following dessert is super easy, but I strongly recommend cutting the butter by half. I'd do that next time and slice the butter and distribute it evenly on top. The original page this came from was called (30)Tasty. I'm afraid I'm a Facebook failure and can't figure out how to use it, so here are my own pictures instead of the quick video Tasty had.

2 cans apple pie filling, one box of spice cake mix, 2 cubes of butter and a crockpot

Pour in the apple pie filling.

Pour on the spice cake mix.

Plop the butter on top. (Remember, try it with half the butter, sliced and evenly distributed.)

Set the crockpot on high, cover and cook for 2 to2 1/2 hours.

Next time, I'm going to try this with fresh apples, half the butter, and use some of the spice cake mix to make streusel topping.

Tuesday, November 24, 2015

15 Years Old

Wow, 15 years old! We're doing things low-key this year. The birthday person picks the meal they want and the kind of cake they want (or, in Sissy's case, root beer floats). Blossom wanted to help me make her cake, and the more we talked about it, the more elaborate it became (to her). I was able to guide her back to simplicity, so that her endeavor to help will be successful, and she was able to crack the eggs, pour in the ingredients and have a try at the electric mixer.

Since we have all the material things we need, we're keeping gifts to a minimum (also, clearing stuff out to simplify to help us all have less distractions and maintenance - crucial for those with special needs and their parents!). I spent two days repairing the quilt that Blossom cut on The Day She Had Scissors and she was very happy to have it back. I'd teased her all day, saying I was giving her something old and a bit worn. She said, "That's okay, Mommy, I will like it anyway." She is so sincere! As the trauma of her past diminishes, her true sweet self is emerging.

Friday, November 20, 2015

A Real 10 Minutes in My Life

Picture this: Everything under control in the house. My girls and two daycare children are at the table eating lunch. I think, yay, I can actually go to the bathroom now. Wrong!

I pass through the hallway and notice a ladder from my front porch to my roof. Ah, the solar guy is here. I take a detour and go outside, climb my magnolia tree to the roof and greet him. He did use the doorbell, he said, but, of course, I never heard it. He's doing fine taking sunlight/shade readings and predictions so I prepare to climb down when I see two men approaching my front door. Turns out they are Kirby vacuum salesmen, wanting $20 to shampoo one room for me. I try my best to convince them that I don't need their services, after all I have two Kirby vacuums with carpet shampooing attachments and I already know they work great, but these guys persist. Suddenly, one of my daughters pops her head out the door and announces that one of the daycare kids has wet her pants and made a huge puddle under the lunch table. Mind you, I'm still up on the roof! Before I can climb down, another daughter pops out to tell me that the other daycare child's mom has arrived to pick her up. Did they let her in? No. Has she rung the doorbell? Yes. How many times? Maybe four or 5, they tell me.

I swing down from the roof via my tree like a tropical monkey, ignoring the outstretched hands and worried looks of the vacuum guys, go inside and handle things. No sweat. This is, after all, my normal life.

Pink Fuzzy

Sissy is 17

Sissy chose root beer floats over cake this year, but I still made sure she had candles to blow out and she was very happy about that. She loved her gifts, a new alarm clock and a cuddle-soft fabric sweat suit. Of course, she got her favorite dinner: Chinese food!

Wednesday, November 18, 2015

Finally, Our Jack-o-lanterns

I found a picture of this online and My Firefighter drew it out on a piece of paper for me, getting the turn-out gear and proportions just right. I then drew it on the pumpkin and he carved it out.

Apple was content to share a pumpkin with me and play in the bowl of pumpkin guts while the rest of us carved. I'm really proud of the way I'm learning to handle my daughters and their various special needs, a balance between knowing what their present limits are and helping them succeed with a level of direction that doesn't take the fun out of it for them, so they end up with a result that is a true accomplishment, thus building their self-esteems.

Jie Jie's on the left and Blossom's on the right



It's funny how with just a little bit of information and seeing something from a different perspective, one can suddenly see with clarity things that were previously an enigma.

There have been very specific things that Sissy does that I've known were "off" and off enough that I'd even mentioned them to several professionals, such as the psychologist doing the IEP last year and her pediatrician. Some things that she did annoyed me to no end - constantly, and others have just become a way of life.

Some examples:

She's always last. Whether it's to come get her plate of food in the kitchen or try something new, or whatever - she's always last.

When she finally does get to the head of the line, she invariably hesitates and often even steps back, and needs a cue, usually something exasperating out of my mouth, directed at her, to get her moving again.

She never leads, has any ideas, directs play between her sisters in any way, is always in Jie Jie's shadow, following her around like a puppy dog.

Last Labor Day we went to Morro Bay. There is a huge rock in the bay. It's grey, but covered in white. Why? Seagulls and other birds live on it. It's a protected sanctuary. None of my girls could guess why the rock was white, even when given clues like, "Some animals live on the rock. Flying animals." And, they could simply look and see the birds. However, Sissy's guess was that deer live on the rock. Never mind that a deer could never even climb the rock, much less find any food there. Why did she say deer? I knew immediately. Whenever we are in the car in certain areas, I always tell the girls to look for deer, especially when we are in Yosemite. The only experience she could remember of being in the car and anything to do with an animal was that we sometimes see deer and she can only draw on what experiences she remembers.

Well, there's a reason.

It's now glaringly apparent after only 3 sessions of speech therapy, that Sissy cannot do the following beyond a toddler or preschool level:

1) look at a picture or real life scene and understand what is happening in it, much less describe what is happening

2) make inferences, to read between the lines figuratively and make predictions. Here are a few examples:

Let’s go swimming to cool off!
What season is it?
a. Summer
b. Winter

I'm hungry! What am I going to do? (She really did get this one wrong!)
a. drink something
b. eat something

A picture of a girl pointing to the sky, the caption reads, "There's something flying in the sky. It's not a bird or a bicycle."

Well, we all know that bicycles cannot fly. Birds do, but it's not a bird. What can it be? How about an airplane, butterfly, other insect, bat or balloon?

3) put herself in the place of another person, which goes beyond the lack of empathy kids raised in orphanages experience

4) cannot imagine - at all, which is why she and my other girls still don't grasp that movies are not real and that roles are played by actors who aren't related to each other, are sometimes older or younger than the characters they portray, etc...

She also rarely hears me call her name the first or second time I say it. By the third time, I'm yelling her name. Then she is angry at me for yelling at her and doesn't know why yelled.

Many of her symptoms match autism, but too many match other things as well.

So, what we have so far is severe developmental language delay, executive functioning disorder.

Because of this, Sissy is functionally illiterate, meaning: "Purely illiterate persons cannot read or write in any capacity, for all practical purposes. In contrast, functionally illiterate persons can read and possibly write simple sentences with a limited vocabulary, but cannot read or write well enough to deal with the everyday requirements of life in their own society.” Sissy is, of course, also functionally illiterate in her native Chinese dialects. I'm sure there's going to be more.

I've requested testing and, unfortunately, I'm having to fight for it. Go figure! The common belief is that the connections in the brain are still forming and that new neural pathways can still be laid down. Work with stroke victims and others who have suffer traumatic brain injuries proves this.

All of this explains why she appears to be able to learn and gets many questions in workbooks correct, but she can't apply any knowledge or any of her experiences to real life. None at all. It's like things never happened. Therefore, she's not able to make any developmental progress.

Sitting there watching the speech therapists work with her is excruciating. She can't do ANY of the exercises they give her so they then must give her assistance to make her feel like she was successful so she doesn't feel badly. I see the looks on their faces and glances the two therapists exchange between themselves and with me. I think their current goal is assessment and that once they find the level she's at, they can put together a treatment plan. They've admitted that Sissy is a completely unusual and difficult case and something they've never seen before. I hope they will admit if Sissy is beyond their scope of help so we can get the kind of treatment we really need.

Tuesday, November 17, 2015

Making the Switch

From This:

To This:

In just one night, I changed my main daycare playroom into a sewing classroom. The next morning, 7 students arrived and my first big class started. It was a success!

This mother-daughter pair didn't tell me it was their very first time sewing until nearly the end of class! Look what they went home with. They are eager to return.

I'm a little sad to have dismantled my beautiful playroom, but it wasn't working out very well. It's a very cold room and there are two doors and a laundry room between there and the kitchen. I put the toys in the exercise/therapy room, which is closer to the kitchen and family room and easier to heat and now I only have to heat the sewing room when I have a sewing class.

I am making the switch from daycare as the means by which I earn a living to re-vitalizing my pattern business, New Conceptions, and teaching sewing classes in order to free up more time to get my daughters to their various therapy appointments and give them more time and attention. The tentative plan is to first focus on the sewing classes. I'll keep the 3 daycare children I currently have, who are all part-time and first focus on filling my sewing classes with after-school children, evening adult classes, and some morning classes. The eventual goal is to be teaching 5-6 hours per day rather than doing daycare 10 hours per day. Once I establish a routine, I'll see if there is time to work on my pattern line. I have a learning curve ahead of me. I need to transfer all my patterns from commercially printed PDF files, to easily tiled and downloadable PDF files and perhaps even update my website. Once that's done, I can finally draft the instructions and publish the patterns I finished several years ago. I am looking forward to this. My creative brain has been dormant far too long and is ready to burst forth and have free reign.

Wednesday, November 11, 2015

It's Happening

Apple is growing up. Way too fast. She is adding more and more vocabulary to her speech now, too, the more her muscles get trained to make the sounds. Tonight, she added a new phrase.

Tonight, we all went to an Italian restaurant for their family night special. They had cloth napkins, a first for Apple. As I unfolded it, I told her that it was the napkin and asked her, "Do you know where it goes?"

She said, "Of course!" and pointed to her lap. It was way too super cute! And so totally 4 year-oldish. She might have been sporting a size 12-18m sweater tonight, but she's definitely turning four soon.

I'm treasuring every single moment of this.

Another neat thing happened tonight. Two sisters of Cambodian decent sat next to us and immediately struck up conversation because my girls are Chinese. We were at one really long, long table, family style. Both taught school, one had a 2 yr. old daughter and taught 3-5 grades special education. Anyway, my girls and I always pray and thank the Lord for our food before we eat and when started holding hands, the two sisters and little girl joined right in. When we went to pay the tab, the waiter had to rewrite it because he thought we were all together when we'd really just met when we all sat down! We exchanged contact information and the sister who is the special ed. teacher is eager to send us some touch math materials.

Sunday, November 8, 2015

My Beautiful Girls - Fall 2015

I LOVE this Paris Kitty motif sweater/dress set!

A Real Haircut

Sure, I've cut her hair before, but it was to clean up what the surgeon had done. Her first haircut shave by the surgeon was exactly 2 yrs. and 3 days ago. That's how long it's taken for the shaved bits to grow out. And, finally, all the orange bits, finally at the end of her hair and not the middle, that had taken up the betadine solution they cleaned her scalp with, are gone!

Sunday, November 1, 2015

Happy Halloween 2015

We went to the Bay Area for Halloween this year, back to our old neighborhood - really to my grandmother's old neighborhood where trick o' treating is more than getting candy, it's a huge party with entertainment. Each participating house goes way out to be spectacular. One had a live band playing instead of passing out candy and they were really good! The decorations and costumes were amazing. One family, obviously in the fish business, had a neat display of fish guts and fish parts that the kids could feel, like a fish eye. Smelly and gross which is just perfect for the Halloween.

We also popped in at our former church ward's party and saw a few friends, had dinner, games and treats there.

Before all the festivities, I was even able to hit IKEA in Palo Alto, meet a colleague who showed me her business set-up and business model and gave me some tips, then I hit a second IKEA to pick up a few things this woman showed me that I could certainly use in my own business.

The previous day, we carved our jack-o-lanterns and everyone did a great job this year - even Blossom. Instead of giving her free design reign and watching her ruin it, I set the parameters (big shapes, straight lines only, and no curves), gave her paper to practice on, then gave her a marker and let her at the pumpkin. When she messed it up, which she ALWAYS does, I cleaned it off, re-did it according to the best of what she'd done, then let her start with the carving tool. Sweet success was hers to enjoy - finally! I'll get the jack-o-lantern pictures up in my next post.

And, yes, we are recycling our costumes, just as my mom did with us as kids! Sissy was happy to be the pumpkin this year and Blossom, the banana. Jie Jie loved being the cat and Apple still fit the lady bug, though she was also Raggedy Ann again earlier in the week for our church party because I just loved her in that costume.