Saturday, December 26, 2015

Christmas Dinner

After unwrapping the gifts, I was pretty tired, I even contemplated taking the girls out to a restaurant for Christmas dinner. I changed my mind after a good breakfast, one that was a gift, actually. Last night our neighbor brought over a frozen breakfast casserole and I let it defrost during the night. All I had to do was warm it up in the microwave. It revived me enough to start cooking and keep cooking. Granted, I did cheat this year quite a bit. I had a store-bought frozen apple pie and the pie crusts I used for my pumpkin pies were frozen, too. But I did do the 16+ pound turkey (in an oven bag) myself and stuffing, carrots, mashed potatoes (from flakes), green bean casserole and homemade cranberry sauce.

This is my old cat, Rose. She's 15. She's not food motivated, she'd rather be on my lap than eating off my plate, so when she went for the turkey, I went for my camera and I love this picture. Her table manners are impeccable, no hands (feet) on the table!

Now, I'm tired. Too tired to sleep. I'll try reading and undoubtedly fall asleep with the light on and find the book under the sheets and my glasses on the floor in the morning. I'm going on strike next year unless I have another pair of hands to help - at least someone to supervise the kids while I cook. On top of doing all the Christmas Eve stuff and Christmas Day stuff, and all the cooking, I even managed two loads of laundry, cleaned the kitchen (with the help of the girls) and deboned the bird.

Friday, December 25, 2015

Merry Christmas

Does anyone remember this doll from June 24, 2007 when I first bought it? HERE'S the post. Back then it symbolized all my hopes and dreams for motherhood and a little girl that would come from China. Back then I never imagined I'd end up with four daughters from China or that it'd take so long to get them and that the road would be so incredibly difficult once they came home.

This year is winding down and coming to a close and so is a phase of our lives. I have new hopes and dreams as I rebuild our life after learning that our future is going to be much different than I thought it would be. There is a new direction and adventure just waiting for us. I know there is an incredible community of special families waiting to welcome us.

Silent Night

One year ago, Apple could only say 4 words.  Now, she's talking in 4-7 word sentences and starting to sing.  Best Christmas present ever.

Monday, December 21, 2015

Holiday Treats

Cooking is such a huge part of any holiday. Everyone loves sweets and treats so tonight, while My Firefighter was making his traditional cakes to give to his friends, I made non-baked treats for the girls. Apple 'helped' while the bigger girls watched a movie on TV.


Jie Jie felt pretty today and that made her happy. She liked that she "matched" her mama's outfit and that made her happy, too. There's not much that makes a mother more happy than to see her child happy. She also liked that she's fitting her older sister's hand-me-downs, which gives her proof that she's growing.

Saturday, December 19, 2015

The Force is with Us

My Firefighter and I saw the new Star Wars movie tonight. Great movie! Our nerd certification has been renewed for at least a couple years.

Holiday Fun

Jie Jie's church youth group made gingerbread houses out of graham crackers last night. We had plans to eat out at our favorite restaurant's Family Night then found out that the church activity was something that Jie Jie really wanted to do so we went to the restaurant and arranged for My Firefighter to come pick her up there and take her to her activity while the rest of us ate at a more leisurely pace. We picked her up when we were finished and topped the night off at My Firefighter's house by watching How the Grinch Stole Christmas.

As the remaining three girls and I left the restaurant, we discovered that Santa was there visiting with all the kids.

Friday, December 18, 2015

Oh, Christmas Tree

We got our Christmas tree yesterday. It's now an established family tradition, our third year in a row getting our tree at the same place then getting free hot chocolate, fruit and tokens to the shooting gallery. This year they had a little carousel, the kind that used to be outside Woolworth's and is still sometimes seen outside of stores. Apple sat on it with great trepidation for the picture, but wanted nothing to do with it after that, knowing it was going to move and make noise.

Apple has My Firefighter wrapped around her little finger and he loves it!

Our regional center case worker nominated my family to United Way this year for Christmas and a local corporate sponsor "adopted" us and two other families. They came out and interviewed me and asked what we needed or wanted: clothes? food? toys? We didn't need any of those things. I didn't know what their budget was so I gave them a list from small to large and got one of the large items, a WeeHoo bike trailer for Apple. They presented it to us tonight and Apple just LOVED it! She's secure in a seat she can't fall out of, with handles she can actually use, and she can pedal to help or not. The pedals have straps to help keep her feet on and the seat is completely adjustable so she can reach then. I can't wait to try it out!

Knock Me Over With a Feather

Another diagnosis just came in - Jie Jie is intellectually disabled, much more so than I suspected.

Sissy's MRI showed a normal brain structure; no obvious reason for her disability.

Our specialist is wonderful. He's encouraging, yet realistic without putting any limits on any of the girls.

Where do we go from here? Well, we still have a long ways to go as far as getting Sissy and Jie Jie into our regional center. The ball is rolling but it's a slow ball. We will definitely be getting more and more involved in our special needs community. Our focus educationally will remain the same - heavy on English and reading comprehension, daily skills level math (or higher if they can do it), and functional life skills. I hope to identify each girls' interests and strengths more precisely and provide them with more time to explore them.

Monday, December 14, 2015

Just Breathe

Last Friday we trekked to Shriner's Hospital, a three hour drive away from home. It's very well-run and everyone is so kind and knowledgeable. They all treat the children and parents so well and with such respect. It's my favorite hospital for attending clinics.

I'm a pro at these medical trips. I've got a system. First, make sure the folding wagon is in the car. Second, pack generous lunches. Third, bring a ton of music to listen to in the car. Usually I also bring a couple movies and the portable DVD player, but I didn't do that this time since we planned to visit friends afterward which means the girls will sleep on the way home afterward. A bit of school work in case we have a long delay (didn't get to it this time) and a book and a few toys for everyone. Lastly, a change of clothes for a couple of the girls and sometimes I bring one for me if there is potential for me to get thrown up on or casting material splattered on me, etc...

We arrived on time, but check-in took a long time because three of my children are patients at Shriner's. We were put into a room and that becomes our new home for the day. One by one, the specialists come in. This time, x-rays were ordered. When the films came back and the specialist returned and showed them to me, I ceased breathing, an icy hand gripped my heart, a throbbing pounding sound filled my ears. I'm sure I turned red then white. He didn't have to say a word. Not one word. I could plainly see for myself all there was to see. Not good news. Not at all. Slam! I knew more could go wrong with my girls, but after our previous exam, this wasn't supposed to happen.

Major surgery needed.

Also surgery that's sort of medium.

Also surgery that's a bit more minor.

Another issue put on hold, completely eclipsed by the diagnosis requiring the major surgery.

I've been doing some research tonight. I'm learning more and more about Jie Jie's special need. You'd think I'd have already learned all I need to know, but as she grows, more and more things show up. They are showing up late because of her tiny size. But guess what? Tonight I learned that her tiny size is part of her condition, not just due to the severe malnutrition she suffered in China (NOT due to neglect, but her condition).

Good news for Blossom! Good-bye SMOs, hello in-shoe orthotics. We hope to pick the up in January when we return to Shriner's.

Jie Jie didn't get off lucky at all. She's the unfortunate one. Her scoliosis got severely worse this past year. It's not straight-forward. Her spine is incredibly different from top to bottom. Many aspects of Jie Jie's special need complicate the surgery and recovery even more. People diagnosed with this special need typically have two to three of seven characteristic features. Jei Jie has five. Affected individuals may have additional abnormalities that are not among the characteristic features of this association and Jie Jie has several, some severe and some not. Thing is, things that didn't seem like an abnormality really are and as she grows it becomes more and more apparent. As I sat with my friend later, we started talking about words surgeons use when things are bad. We made a list:

Veeerrrrry interesting
Very complex
I'll need to do some research
Let me give this some thought
Let's focus on this issue and put aside the other one
This is unusual
I've never seen this before

Then there is the complete loss of words:

Well now, this, uh, hmmm, well, uh, let me see again, yes, very complex.

I am praying for a miracle. She really needs one. As it turns out, we did get a small miracle with a chance encounter with a stranger at IKEA after our appointments. That's for another post, though. I've started doing more research and I have come up with an idea to present to the surgeon. It's still major surgery and I don't know if it's done, especially for this condition, but it might be less risky in the short and long run.

Meanwhile, something was finally absolutely confirmed that I knew all along. Kaiser failed my child in the treatment, actually the lack of treatment, of her feet. The specialist at Shriner's said she would have been treated aggressively and will good success and Kaiser said there was nothing to be done. They did more that has caused my child not to get the treatment she needed, despite me fighting like crazy, but I need to put the past away and work on what's in front of me now.

The last time we were at Shriner's a defect in each of Jie Jie's hands were also identified for the first time. For all the appointments we've had at Kaiser, every single specialist missed this one. There is a surgery to help and it's highly recommended, but it is optional. It bears serious thought and might be a good preliminary surgery to see how Jie Jie reacts to anesthesia and pain medications before going for the huge surgery. I don't know yet. More serious prayer and research are needed so that I can make an informed decision.

Lastly, there is little Apple. Her hands are doing great! The surgeon was particularly pleased not only with her hands, but her intellect and cuteness. She was very complimentary to me for all the OT-type stuff I've done at home on my own with Apple. The result is that Apple doesn't need any occupational therapy at this time and, if I keep doing what I'm doing with her, she probably doesn't need any until she gets into school and we find things she can't do that she would like to do.

Surgery is recommended for Apple's feet. We have time to wait, though. The specialist thinks it's inevitable if she's to wear shoes comfortably in the future, but for now, Apple's feet are so narrow that she's not experiencing any issues at all.

Apple still needs another major huge cranial surgery. I'm confused though. I'm told it's cosmetic, but it's routinely done as part of the standard treatment for Apert syndrome. Perhaps because Apple's so mildly affected I'm hoping to avoid it. It's so hard to know what she'd want as an adult. Would she mind not have a brow ridge or nose bridge if it means not suffering through another horrendous surgery with all its inherent risks? At four years-old she'd certainly opt to avoid surgery. I certainly would opt to avoid it. But down the road, what would she want?

Apple will see another specialist in January about another issue, along with Jie Jie, who will see the same specialist, another new one, and the surgeon who needs to do more research. I feel so much more confident and safe with this surgeon than the one we saw at Kaiser 3 years age, the one who said there was nothing to be done with her feet. Turns out he also probably misdiagnosed them since he never took a plantar flexion x-ray.

Meanwhile, I'm still awaiting the results of Sissy's MRI from last Thursday and tomorrow morning the trend of back-to-back appointments continues as Sissy will see another specialist, then have speech therapy on Tuesday, there's speech therapy for Apple and Jie Jie on Wednesday, then Jie Jie sees another specialist locally on Thursday!

Our lives are completely disrupted. School is barely happening. Meals are at odd times. We are TIRED! The house is a mess, but the laundry is done. Through this all, Blossom has had only one tiny meltdown and it was today. She is being a trouper! She has come so far this year! I'm very proud of her!

Thursday, December 10, 2015

A Family Record

I remember the month I did Jie Jie's first set of serious diagnostic appointments and the total for the month came to 11. We have surpassed that. Even though we aren't all the way to Dec. 24, if I count those appointments, those from Nov. 27 to Dec. 24 will have been at 18 or 19 medical and/or therapy appointments, often when two or more kids are being seen at the same time, and 6 more visits just to sign and/or deliver medically related paperwork or pick up prescriptions. Out of all these days, there were 7 straight-in-a-row business days of appointments - another record for me.

Today alone was Sissy's MRI and she did very well keeping still, then, then on the way to Sissy's speech therapy, we dropped off a medical form for Blossom's care somewhere else. When we finally got home, there was a message from Kaiser saying that they forgot to get my signature on a very important form for Sissy's genetic testing, so we went to yet another Kaiser location while I took care of that!

Tomorrow we drive three hours to Shriner's Hospital where Apple, Jie Jie and Blossom will see various specialists. And then, we'll return there in January to see two more specialists.

On the non-medical side, Apple began asking, "Why?" for the very first time yesterday and hasn't stopped. Moments later, she also expressed her very first wish by saying, "I wish had tree our house," meaning, as we passed a Christmas tree lot, that she wished we had a Christmas tree at home. She's making huge strides of progress right now across the board.

Sunday, December 6, 2015

Diagnosing Auditory Processing Disorder

Auditory processing disorder is difficult to diagnose because so many of the symptoms are the same for other disorders. I've been told that it takes until a child is about 8 yrs. old to be able to properly diagnose them. I know that younger children have been diagnosed, so I don't believe this is entirely accurate.

The first step that we took was a speech evaluation. That showed a significant developmental language delay so we began speech therapy. At the first appointment, they asked if we had any specific difficulties and after I listed them, the therapist said it sounded like APD, which I'd suspected all along, and tested her for it.

The test of auditory processing disorder was done with headphones. Part was that noise was in the background at a certain decibel level in a certain tone range and then a word was said. She had to repeat the word, thereby differentiating it from the background noise. Another part of the test was that she heard a different word in each ear and had to say which word she heard in her right ear or her left ear only. She had to follow one, two and three step directions, for example, "Say your name, clap your hands, and stand up." Another part was being able to repeat a certain number of words in a row that she heard and/or a sentence. There was more, too, but I can't remember it all.

There are many websites that list symptoms of APD, here's a list taken from one site:

Does your child frequently demonstrate any of the following problems with expressive language?
•Doesn't speak fluently or articulate clearly
•Has poor vocabulary, sentence structure and grammar usage
•Displays illogical flow of stories or ideas
•Uses vague words such as 'thing', 'stuff', 'whatever'
•Problems with receptive language?
•Needs to hear instructions/directions more than once
•Appears overwhelmed when there is a lot of auditory activity
•Misinterprets verbal messages
•Confuses similar words or sounds
•Seems distracted or unable to sustain attention when receiving verbal messages

Problems with other language tasks?
•Cannot associate sounds with their written symbols
•Tends to spell words phonetically (eg. spelling 'fire' as 'fier')
•Reads slowly and has poor reading comprehension

Problems with auditory sensitivity?
•Finds neutral sounds unpleasant or painful
•Puts volume of music or television unusually high or unusually low

Demonstrate any of the following physical coordination problems?
•Poor fine motor skills (using scissors, writing neatly, holding a pencil, etc)
•Poor gross motor skills (catching a ball, skipping, swimming, etc)
•Inability to perform many simple physical activities that others of the same age are able to do
•Falls over and loses balance easily or handles objects clumsily

Demonstrate any of these additional problems?
•Has poor personal organisation (operating within time limits, approaching tasks in a logical order, etc)
•Becomes frustrated, overwhelmed or irritated more easily than most children
•Experiences difficulty with concepts that involve time, direction or sequence

Saturday, December 5, 2015

Update on Sissy

Thank you for your comment, Sarah. You are right about meeting a person where they are, rewarding them for their effort and about Sissy's delayed development.

There have been a lot of trolls reading my blog lately. There are websites devoted to bashing moms like me who are doing terrific jobs with children in difficult positions. People who don't have a clue what is truly going on. How could they, when even the professionals are only beginning to realize what's up with these kids?

There are so many families out there reading my blog now or who will find it later who will benefit from my experiences. Families who will not give up on their kids, just like I'm not giving up on mine. Families who don't know what their next step should be, who may learn what to do next after reading my blog. Families who just need to know that they are not alone, that someone else is living with the same difficulties and completely understands what they are going through, and sometimes that's enough to give someone comfort, encouragement, reassurance and strength to keep going one more day.

The purpose of this post is to explain where we're at with Sissy. She's really struggling right now. She didn't know she has a special need. She is devastated to find out that she does and it's causing many behavior issues that are making things much worse for herself. It's like finding out you've got cancer. There are stages for dealing with it: fear, denial, anger, acceptance, determination to fight it. There are also things that have come out about her chosen daily behaviors that she's been doing all along that I've had to put a stop to that are not related to her special need or to finding out about it, but are choices she's persisted in making from the very beginning of her life in a family.

This post is also to explain some of the things that are being done and/or will be done. We are, however in the early stages of diagnosis and, therefore, are still working on treatment options and plans.

There are many things that have made diagnosing Sissy difficult, mostly the lies in her China profile and the lies I was told in China when I adopted her. I asked point-blank questions and got lies for answers.

When I first met Sissy in China she presented as a child with severe mental disability. The pictures on my blog from that time were only the most flattering and posed pictures, of course. The reality was that Sissy's tongue protruded from her mouth, her fingers were always in her mouth, she had low core muscle tone, she slumped beyond what we call slouching, her vocalizations and speech were odd, her eating manners atrocious, and more. I specifically asked what was wrong with her (sick? injured? did she have a special need?) and was told she was fine and just looked that way. I asked the orphanage director and "teacher" who had brought her. I asked my guide. It was my guide who pulled her shoulders upright and made her stand up straight. He also reassured me that her speech was fine, but slow. Most of us who adopt in China have been through many classes, read books, and have been taught by our adoption agencies that how kids present on adoption day is not usually how they really are, that they are in shock, are scared, etc..... Everything Sissy was doing was consistent with what the books described. But these things also meant something else, something I was thinking and asking about, but was being assured was not the case. That this was more than fear or shock, that Sissy wasn't the healthy girl I was told she was.

Looking back with the knowledge and experience I have now, though, it's so obvious that I had been lied to - right to my face. Everyone saw it in the hotel, in public, even at the U.S. Consulate, where the worker's first words to me were, "I see you've adopted a child with mental impairment." I actually said to her, "No, they said she's fine, that she only looks that way." Later that afternoon, after an incident with Sissy while still at the Consulate, we got a call at our hotel. It was the consulate worker asking me if I was sure that I wanted to "parent this child." I assured her that while difficult, her behavior was still within the range or normal that the adoption books described and that we'd be fine once we got home. I'd asked all the right questions, I got lies in return. The consulate agent had suspicions about Sissy, but she wasn't a doctor, so she did what she could, too.

It's true that Sissy's behaviors were on the list of those in the books. However, the books didn't specify the degree of the behaviors, the frequency, or the number of behaviors presenting all at once. All of this was outside normal range. I just didn't know it and neither did many, many people helping me at the time.

Also complicating things was that Sissy could seem to behave "normal" and well when she chose to do so. She appeared highly capable in many ways and even is capable in many ways. She has developed many positive qualities and abilities. This is key to remember and I'll mention it further down: the difference between the highest level of functioning and the lowest.

Once home, Sissy did learn many things. I cannot convey in writing the amount of effort and hard work it's taken to get us to where we are today because it became our normal. I'm only now just beginning to realize how skilled I am, without a degree, at teaching children with special needs. It's why nearly everyone asks if I'm a therapist, nurse or other trained professional. It's a gift, but also a curse because it made my children present much more capably and well than they really are. It's the place most families arrive at AFTER getting a TON of professional help.

Yesterday was a huge aha moment. We have added another pediatrician to our list of professionals. This particular practice is outside of Kaiser. This practice specializes in treating children with special needs - all kinds of special needs. The doctor was very impressive! She just happened to be American born Chinese, have four kids herself, and have an excellent knowledge of what life in an orphanage does to kids. After our 2.5 hour appointment - YES, she did spend that long with us - she looked at me and said, "I don't have any other parents who are doing as much for their children as you do for yours. What you've done is amazing."

She was particularly impressed by my the time, love and attention my children obviously receive, my homeschooling skill, the physical therapy regime we maintain at home (She said, "I don't think any of my other parents even know what a Bosu ball is!), how I handle the kids, what I've taught them as far as behaving appropriately goes and what our focus is for the future, our diet, lifestyle, and what I've given up personally for my children.

Back to Sissy. A common question: Why has it taken so long to realize she's so delayed and has a special need? There are many factors and I'll list the most obvious ones:

The lies I was told about her. Surely I wouldn't be lied to right to my face in China, right?

Sissy needed time to learn English, acclimate to family life and an entire new culture.

Once home, she did make huge amounts of progress: learned English, appropriate manners, made progress academically in some areas, appeared to be adjusting, appeared happy and content, we seemed to resolve our big issues with the help of our therapist, etc...

We had to get through the orphanage delays to see what were special need delays.

The next biggest disservice that occurred was that the first layer of professionals to help us attributed all her issues to being in an orphanage. When their efforts and suggestions failed to help us this past year, and as I began learning more and more and my efforts with Blossom led to Blossom becoming more and more successful and as Blossom began to pass Sissy in some areas, I began to realize that Sissy's issues were much more serious and it's at that point I started butting heads even harder with the professionals around me. Sissy's pediatrician finally referred us to the geneticist after I'd asked for referrals to a developmental pediatrician, neurologist, and psychologist. Sissy's speech therapist was key in being the first professional to demonstrate just how severely affected Sissy is in specific areas. They still have not determined her functional low in all areas, but in some areas we are down to toddler level.

The geneticist had seen Sissy before, about 2 years ago. He'd even done an array on her, but it didn't show anything. He said that I should have brought her back to him the minute I realized her issues were a special need. I just didn't know that. Who thinks about a geneticist being the key professional needed in our puzzle?

Turns out that he is our key. He took one look at the evaluation done for the IEP and said, "The great difference between her strengths and weaknesses is a huge red flag and should have been enough to have alerted everyone to the fact that this child has something severe." He also said that Sissy's condition is much more involved than just the frontal lobe of her brain. This wasn't caused by her life in the orphanage, she was born with this. He pointed out physical characteristics (they called these dysmorphic features) that indicate that this condition is congenital and not environmental.

He insisted that Sissy stay in the room while he and I discussed everything, something I'm thankful for since Sissy often thinks I'm making things up or making decisions arbitrarily. He made some very key points, which supported everything I've been thinking, feeling, saying and living...

1) Sissy was born with this and would still have the same difficulty she's having even if she had been born here. He said that there is no way people in China could NOT have known she had a disability. Looking back, especially at our early pictures, I can't miss it and wonder how I could have been so gullible to have believed everyone when, upon my asking if she's really okay, they all said, "Yes, she just looks like that."

2) Her behavior trouble is NOT as result of her condition and she is capable of choosing right from wrong.

3) Her difficulty learning and delays ARE a direct result of her condition.

4) One on one teaching is best for her. Let any naysayer of homeschool forever hold their peace.

5) The discrepancy between her strengths and weaknesses is enormous - a huge red flag that should have triggered the public school to set certain things in motion last year after her evaluation and IEP meeting.

6) This discrepancy makes teaching her all the more difficult, causing her confusion, because, she is capable of performing certain high functions, but can't apply doing them to the appropriate situation and can't often understand the most simple thing. This is why she appears so highly functioning but isn't.

7) Without learning, maturity doesn't develop.

8) As with anyone with a special need, getting enough of the right kind of help is easy if one is a millionaire and very difficult if one is not. Help is restricted to what our locale has to offer.

9) She is going to have a brain MRI as soon as it can be arranged to look at the structure of her brain. She is not going to have an EEG because of their variability in results (too many false positives and false negatives). We are also doing extensive genetic testing, which takes months for any results. While it's 98% certain we will NOT find the cause, it's worth it to try just in case we find something treatable, for example, a brain tumor (unlikely given the dysmorphic features). At the same time, if there are clearly parts of her brain underdeveloped, missing or otherwise damaged, certain therapies would be futile and, therefore, frustrating and a waste of time.

10) There is no way to know at this time what Sissy's potential is but the specialist stressed that "she is who she is," meaning, we will keep trying as long as progress is made, but since very little progress has been made in the last year, she may be at her peak. Her "peak" needs to be clearly defined here as the highest level at which she is capable of using knowledge and information that she learns. She can gain new knowledge and information and memorize things and learn new skills and facts, but being able to integrate them into her life probably won't get any better. Memorization is her strength, but she's about at her capacity to memorize, which is why she's doing so poorly at this time.

Sissy's has been doing unacceptable things to her sisters from day one that I thought we'd addressed and mostly eradicated during treatment before we moved. I thought I'd addressed and solved the issues that have lingered and cropped up from time to time and even recently. This wasn't so. Sissy just took the issues underground to a deeper more hidden level. Because of these harmful actions toward her sisters, she may not be left unattended in a room with them. Because of Blossom's progress and developing self-esteem and self-confidence, she was finally able to tell me what has been going on and stand up to Sissy and tell her to her face, "I'm not afraid of you any more! You can't hurt me any more! If you try, I will tell Mommy." It was an amazing moment for Blossom, whose voice was so strong and confident and I was so proud of her. Yet, at the same time, my heart was breaking for Sissy.

Jie Jie has also been traumatized by Sissy. It will take longer for her to recover. We will probably need to enlist the help of others since Jie Jie also has a special need that makes communication and learning very difficult.

Now, at this point, readers might be thinking, "How could a mom not know all of this was going on?"

Many, many, many parents have asked themselves this question over the millennia. Parents are usually the last to know, to find out, because the children hide it from us the most. How many times have we seen violence in the media (shootings at schools, etc...) and the parents are stunned, yet looking back, all the symptoms are there. How many times have all the symptoms not been there and there are not answers or it's a bit mixed and a picture can only be put together after much research?

The truth is that I knew SOMETHING was going on and I'd been addressing it and working to uncover more of it, but, again, the behavior is insidious and the professionals telling me all the wrong things and making excuses and giving me completely wrong advice. Thankfully, I was taking many actions that did help and did prevent escalation, but without more information, there was no way I could know what I was fully dealing with. Until now!

And this is common! It's so unfortunate that parents of children with special needs fight all their lives to get their kids the right care. They fight for treatment and therapy, for nursing and other supportive care, for equipment, and even for adequate education for their children. It's a torturous, frustrating, time-consuming beyond all reason and belief, more than exhausting, often futile, and it destroys families and children every single day in our country.

I have been fighting for each of my children's quality of life and care from the very first moment I decided to adopt them and I've never stopped.

Tuesday, December 1, 2015

Happy Birthday, Apple!

Apple turned 4 today! It's the first birthday she's had that she'll probably remember and the first where she really knew what it was all about and anticipated it with amazing joy. After watching her sisters go through their birthday celebrations this month, she was ready when it came time to plan her party. She wanted pizza and "pupcakes" and that's what she got. She didn't stop smiling from the moment she went to bed last night until she fell asleep tonight. All of her favorite people were there and she reveled in the love we all have for her.

I LOVE this picture of my not-so-little family!

It's been "Movember" so most of the firefighters are sporting a 'stache right now.

She was the most adorable thing I've ever seen while making her wish. She covered her eyes with her hands, concentrated so seriously, then tried to blow out her candles. She got three out on her third or fourth blow but couldn't get the last one and, like last year, singed her bangs a little trying so I had to help her out. No one could smile any bigger or brighter than she did tonight.

After watching and helping her handy mama assemble furniture,
Apple knew exactly what to do and went right for the instructions.

This little girl will make an amazing mommy one day. She can diaper her baby like a pro, always checks the side of the diaper for poo before changing her, makes sure her baby likes her food, and keeps everything nice and clean and organized. When gives her baby a good-night kiss before tucking it in is when my heart melts. Experts say that children are our mirrors, especially when they play. If she's my mirror, I'm doing an excellent job.

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.