Friday, October 30, 2015

Fair is Fair but It Bites

Before I got a diagnosis for Blossom, it was hard to know what to expect of her. She ranges from 4 yr. old behaviors to about 8 yr. old behaviors. For nearly a year, Blossom was on dish washing duty. It was my attempt for her to learn to properly wash dishes. I finally gave up after many dishes never were thoroughly cleaned and we went through numerous sponges since she'd cut them all, by accident, with the knives she was washing. I gave her multiple lessons and examples, but I finally gave up.

I forgot about the sponges in the last several months that she's been on drying duty.

Yesterday, she forgot to help Sissy with the breakfast dishes. Sissy washes and loads the dishwasher and Blossom dries and puts the rest away. Sissy was definitely doing a lot more chores and Blossom definitely doing a lot fewer, so I told Blossom that she had to do the lunch dishes by herself.

We ate out last night so there weren't any dishes to do.

This morning, I grab the sponge and it's in two pieces only held together by the scrubby side.

It's a small thing, right? Just a sponge. But each one costs money and they add up. Imagine going through 3 sponges a week when your budget is screaming for mercy.

I wish I'd remembered about the sponges.

Friday, October 23, 2015

Conversation Today With Sissy

Me: I notice that the sun still bothers you. Why haven't you used your Christmas money to buy sunglasses?

Sissy: I already have sun glasses.

Me: Why don't you use them?

Sissy: Because....... (about a 20 second pause) ........I don't have a reason.

Speech Therapy

I'm getting to be a pro at speech therapy, but I certainly didn't start out that way. All three older girls got into a free program at the Scottish Rites center our first year here and I eagerly drove them downtown each week and sat in the waiting room and waited and waited and waited to see some kind of progress. I waited nearly a year before pulling them out of the program. The key to speech therapy is to see progress. If there isn't any progress, the program isn't working, so do something else! I learned this the hard way.

Fast forward to what we have now. It's EXCELLENT! Apple and Jie Jie go to the same place and while the progress is slower at time and faster at other times, there is always progress. I also don't allow the therapist to play with my girls unless the game is directly related to speech and the girls are actually speaking. At the Scottish Rite place, the girls rarely spoke - duh! They played Brain Games on the computer instead.

Sissy had her first speech therapy session today. She's going to a place much closer to our home, which is great. It also looks like it's going to be a great place, too. The therapist did everything I'd have done, meaning, she caught all of Sissy's bluffs and struggles and made Sissy work through them. First, the therapist showed Sissy pictures and she had to tell what, why or where. For example, one picture was a little boy with a big band aid on his head and the back of the card said, "Why does the boy have a band aid on his head?" This wasn't too hard for Sissy and she did pretty well.

The next exercise was new to me. The therapist showed Sissy a very short and simple video clip and she had to make up the story that went with the picture and record herself. Then, the next part of the story video clip was shown and Sissy had to do the same thing again. This was very difficult for Sissy. She cried. Not only does she not notice details, but she doesn't comprehend inferences, so she missed a lot of what was going on with the characters expressions and body language. Then add the language part and it was even more difficult. As long as the therapist cued and guided her, Sissy could manage something, but when Sissy had to do it by herself, it was really, really tough. Afterward, out of Sissy's hearing, I asked what age level the therapist thought Sissy performed this exercise at and she said that Sissy was just like the 6 year olds she works with.

I can't wait to see the progress that Sissy is going to make!

Monday, October 19, 2015

Friends?

Thank you all for your ideas. Most I've tried. I'm at the bottom of the barrel of tricks which is why it's time to push for all the evaluations. The two big girls have been home more than three years now. Blossom has an accurate diagnosis. Lately, she's been doing her best! It's great! Now, it's time to focus on Sissy.

I know I've mentioned it before, but my girls don't have any friends. Oh, everyone at church is friendly enough. Blossom can always find a little girl to hang out with at a park or ice skating and she believes they are friends even though she'll never see them again. Jie Jie still doesn't have any need or desire for a friend. Sissy doesn't seem to either and the one best friend she has, who was her "sister" and roommate all through her life in China, she ignores (more on this later). When I observe Sissy from afar with her peer group, she is nearby with a goofy grin on her face or staring off into space like she often does. Sometimes the girls will draw her in, but the only time she begins to talk with any of the girls on her own is when she sees me watching her. Then, she goes up to them but still doesn't say anything.

At youth group activities, Sissy runs in with eagerness. She participates, but only in the actual activity. She doesn't have any by-play with any of the other girls, no side-line chit chat. She doesn't even think about the girls when she's not at the activity. She doesn't ask them anything, doesn't ask what what they are doing, and she doesn't ask me anything about them and what they are doing when we're alone. No curiosity. She doesn't even seem to realize that she should be trying to find out what she's missing.

Sissy's best friend from China underwent a bone marrow transplant over the summer - 6 months away from home (her mom was with her) and much of that time spent in the hospital suffering. I explained to Sissy what was going on. I counted down the days to the actual transplant with much excitement, hope, and prayer with all my girls. In the ENTIRE 6 months, even when her friend was suffering the most and at most risk, Sissy NEVER, not ever even once, asked how her friend was doing. I got her to send one letter with a gift. I was devastated. This friend has sent Sissy numerous letters and packages. She's even come for a visit. I reached a point where I told Sissy that I wasn't going to keep her updated any more and that if she wanted to know how her friend was doing she can always ask me. I kept to that until her friend was in the most rough time of it and then let Sissy know that her friend was hurting and was very sick. Still, no concern and no asking how she was doing.

She doesn't have any interests. Well, that's not quite accurate either. Here's the reality. If it was left up to her, she'd sit and do nothing all day long, or play on QQ all day, not understanding half of it.

I taught her to sew. She can make her hands do very well, but it was VERY hard to teach her what to do with them. I showed her numerous times (the same project). I had her write down the steps in her own words and pictures. She did a TERRIBLE job and didn't follow them. I wrote them down. She still couldn't follow them. She couldn't follow by looking at the sample either. Eventually, though, honestly, after about 20+ dedicated lessons on the EXACT same simple project, she memorized how to do it and could do it on her own. I gave her books and videos and Youtube sites to look at along with a pile of fabric. She had the machine and a room to herself for an entire day to make anything she wanted to or could. She made another of the SAME thing, but with poor dimensions so it didn't turn out at all. She didn't even realize it didn't turn out. She says she likes to sew and wants to sew, but she never sews. She never asks to sew. It like it never happened that she ever did sew.

She was helping in my daycare with one baby, under close supervision. Her hands can change a diaper - when I tell her to. I thought she'd learned on her baby sister WHEN to change a baby, but she didn't. What she'd done was memorize that I told her to change her sister's diaper when she got her out of the crib after her nap. I had to keep telling her to change the daycare baby. Finally, I did it, then let her keep an eye on the baby. I came in a moment later and Sissy proudly announced that she'd changed the baby's diaper. I asked if the baby had pooped. Sissy said no. I asked if the baby had wet. Sissy looked confused. I told her that I'd just finished changing the baby and asked her to get the diaper she'd removed. The diaper was dry. I asked Sissy why she changed the baby. She answered, "Because you told me I had to change the baby." She couldn't put it together that the reason I told her to change the baby was because the baby was wet. So, I explained about wasting diapers and that we didn't change a baby unless it was wet or stinky.

The other day after Apple got back into her stroller after using the restroom, I noticed that Sissy never gave her back her doll. I asked Sissy why. Sissy looked confused. I asked her again why she didn't give Apple her doll. Sissy said, "Because I decided that." So I asked, "You thought about giving Apple back her doll then decided not to?" She said, "No, I didn't think that." I asked, "Did you think about giving back the doll at all?" Sissy's answer, "No." Then I asked, "Did you think about the doll at all?" Her answer, "No." Me, "Did you notice that Apple got into the stroller?" Sissy, "No." What I noticed was that Sissy hadn't moved any part of her body from head to toe during the time I was in the restroom with Apple, even when I sent Apple out ahead of me. Apple could have walked out of the restroom and walked away and Sissy, who was standing right there, would not have noticed. She isn't present much of the time.

Silvia, your question is a good one. Have I had any training to help talk with Sissy. Yes. Our speech therapists have been great at giving me ideas and I hope to get more with Sissy's new speech therapist. Any conversations I have with Sissy include VERY, VERY, VERY long periods of silence where she's either lost or trying to figure out what she should say or what I'm saying. Sometimes she'll admit she doesn't understand what I'm talking about. Other times, she feels she does understand because she can parrot it back to me. Recently, I pointed out to her that being able to repeat something back to me doesn't mean she's understanding it. She was quite surprised and didn't seem to believe me. I have had the exact conversation with her about living outside that you've suggested. What will you eat? Where will you sleep? How will you buy clothes? Bathe? Take care of your period? Stay warm? Etc.... She can't answer any of these questions. She goes silent and blank, not with sullenness, but with lack of understanding.

Goodiego, I've tried your suggestions too, from the very beginning. We watched The Brady Bunch, Little House on the Prairie, American Girl movies, tons of movies about girls dealing with adversity and winning through faith or with a horse or best friend, etc... I still can't get my three older girls to understand that movies are played by actors and actresses and it's not real life. I confounded them today when I told them that the girls in the latest American Girls movie aren't sisters in real life and that the smaller girl is actually a year older than the taller girl. We have two different emotion posters, done the mirror thing and so much more.

Peggy, you are very right about them being scared of the future. Blossom copes by wanting to be prepared and talking too much about it. That's quite easy to handle, though, because she is, at least, acknowledging that she has a future. I think Sissy is scared, too, and she finally admitted that she doesn't want to do any work, that she wishes people didn't need money to get things. Yay! At last, some truth! But, as Sara mentioned, one reaches an age where they have to join the world and contribute and that time is fast approaching. Sissy is making little to no progress in areas where it matters the most. At this rate, SHE won't ever be ready, but that's too bad. She has to do something - anything - and stop doing nothing.

Sara, you echoed my own thoughts from last year. Sissy just doesn't take any initiative unless it's a memorized action, such as taking out the garbage every week without being told. She knows she has to do it so it looks like she's really with it. Really, what American mom can brag that their kid remembers trash day every week? I can. But I'd gladly trade that for a kid who can THINK. To get Sissy to explore ANYTHING requires it be fun or that I force her. She doesn't seem to have a need to feel complete or to achieve. She's so empty inside. She's like an android that does the required program then shuts down until another program is given. It's the weirdest, most unnatural thing I've ever seen. It's like she's just existing, taking up space, breathing, much of the time. I've never seen such a blank person in my life. Even children with autism or other disorder who "go away" are moving. Sissy doesn't even move very much. And when she does move, she moves with extreme slowness. When I urge her on, it's like flipping a switch, almost startling her.

Here's a list I've compiled about her after careful, diligent observation while reading the book Hold Onto Your Kids in the section on maturity. Sissy has:

No creative solitude
No desire to figure things out for herself
No pride in being self-sufficient
No ability to reflect, ponder or question inner experiences
No initiative
Not self-motivated
No aspirations AT ALL
and, Does not respect or even notice the needs of others

Her eyes are open but she doesn't see is a good description of her most of the time.

I realize as I type all of this that I am still not conveying what Sissy is really like. Maybe if I could, I'd understand her better, which is my deepest desire as her mother. Maybe there's a lot going on inside her that she can't express. I can't tell. She has very little affect most of the time. I am hoping and praying that the evaluations reveal something we can use to help her.

Saturday, October 17, 2015

Deeper Relationships With Children

Something has been going through my mind lately as I continue to carefully study Sissy and make my own observations and evaluations to send to the developmental pediatrician. One of the things that I've become very aware of and truly miss, is having a deeper relationship with my older girls.

By the mid teens, most teens are having rather philosophical conversations with their parents as they try out their wings and consider new ideas and beliefs, gain more knowledge and maturity. There begins to be talk of a future as an adult and they share desires and hopes. I realize that this might sound more deep than many teens may get these days, but I do know many, many parents who are having these experiences with their teens at this stage.

I truly don't think Sissy imagines anything other than returning to her orphanage in China. She can't even begin to imagine getting older, much less being an adult. She still thinks living on the street holding a cardboard sign is a viable option. She's memorized our conversation about being an adult and just fills in her side of the conversation with things I've said. It goes something like this...

Me: So, what do you think will happen when you are an adult?

Sissy: I know I need to work.

Me: What would you like to do?

Sissy: I don't have any skills.

Me: What are you doing to learn skills?

Sissy: Obey mommy. Not lie.

Me: But you aren't doing those things. You aren't obeying and you are sneaking and lying a lot.

Sissy: (nothing)

Me: Do you have a plan?

Sissy: (starts looking confused)

Me: Have you been doing your speech exercises?

Sissy: Not every day.

Me: Have you been doing anything to help yourself learn and grow?

Sissy: You said I'm not growing any more. (she's thinks I'm talking about height)

Me: Do you understand what I'm talking about?

Sissy: I will live outside.

Me: I've already told you that you can't do that.

Sissy: (nothing - she can't go any further)

Communication is everything. How do we communicate with a newborn baby who isn't verbal or anyone for that matter who isn't verbal? We do it through looks, actions, touch, care, etc... What happens, though, when children don't respond to this?

A healthy newborn will grow up and learn to speak. It will develop and conversations will go from a mother's soothing words, to encouraging and imitating baby's sounds, to repeating real words, and, eventually, to having basic conversations that will include questions by the child. As the child's knowledge and experience grows, the conversations become more complex, the child's ideas gain depth and understanding of an ever expanding world. The parent can broach new subjects and the child can respond and vice versa.

This doesn't happen with Sissy and happens with tremendous delay with Jie Jie and Blossom. I wonder where we'll be three years from now?

Tuesday, October 13, 2015

Clarification of My Previous Post

It's not at all that poor kids who score low don't get services. It's that the school staff doing the evaluation decides if the reason for the low score is intellectual or socioeconomic. They figured that Sissy's delays were socioeconomic and that if she was mainstreamed, like an immigrant who had come from another country with their family and was an English language learner, that she'd catch up. The woman I was speaking with was very sorry since she was also one who helped make the decision. When she saw Sissy again this year as we got Blossom settled in school, it was plain to her that Sissy hadn't progressed and indeed seemed to have an obvious special need, yet she didn't say anything until I asked. She explained that Sissy appeared well-behaved (what that's got to do with intellectual disability I have no idea), cute and interested. She, of course, didn't realize she was looking at a child with RAD who attends to every stranger who gives her attention.

Special education does cost more money. The student/teacher ratios are lower and there is more staff and adaptive equipment, restrooms for special ed. classrooms for changing diapers and clothes, etc... A nurse comes to do feeding tube feedings and other medical treatments during the day, too. Some kids have personal aides all day. The system is designed to "weed out" rather than include any child possible. After all, if a child scored as low as Sissy did, wouldn't it be in the child's best interests to err on the side of getting her special education and then move her up if she made progress, rather than throw her into the mainstream and let her flounder before realizing a mistake was made? In our old school district, I was told that a child would have to fail for a YEAR before changes were made. I've since learned that the information I received from that district was incorrect. They'd even told me I couldn't have my kids evaluated without enrolling them. I was told this twice very firmly!

The bottom line is that these people truly want to help, but they are so overwhelmed with the numbers of students needing that help that there aren't enough hours in the day, staff and resources to get everything done. Our school district was fined by the State Board of Education last year for failing to provide speech therapy to a child who qualified for it. The reason the child didn't get speech therapy was that there aren't enough speech therapist and despite efforts to hire more, there is a state-wide shortage of speech therapists so there isn't anyone to hire! The system is broken. Each school is responsible for the evaluating of all the students who live within the boundaries of that school. Our high school has over 3000 students! There is only one psychologist on staff. The school has 60 or 90 days to complete the evaluation. With that amount of students and limited time to try and schedule all the different evaluators, many of whom come from other schools, like the speech therapist, it gets near impossible. I requested Sissy's evaluation in May and it wasn't complete until November and I had to keep on them and even push for the speech evaluation.

Monday, October 12, 2015

Stunned

As part of getting Sissy evaluated, the developmental pediatrician wants to see her public school evaluation from last year. It's missing (she may have thrown it away to spite me), so I requested another copy from the school. The head of the special education office at the school is great and called today to tell me it's ready for me to pick up. I started asking her about it. I was so ignorant last year and probably in a coma since I was doing four evaluations and IEPs at the same time between four different schools, but when the evaluation said Sissy didn't qualify for special education, I thought it was because she tested too high even when she was below average and low in all categories.

Wrong, wrong, wrong. What it really meant was that she was low. Low enough to qualify for special education. But, and it's a huge but - The evaluators decided, based on their criteria, that she didn't have intellectual deficiency, but that her low scores were because of her poor socioeconomic situation in the orphanage prior to her adoption, therefore, making her ineligible for special education.

The woman today apologized to me. I can have her evaluated again since it's been a year and they would surely see lack of improvement and/or decline (since she's a year older the test would be different). At this point, I'm having my pediatrician refer us directly to the Regional Center and I'm still pursuing an evaluation from a developmental pediatrician.

An entire year has been wasted when I could have been getting my child help and services that would have made a difference to her and our family. I would have done so many things differently for her had I known. At least I started intuitively making some changes a few months ago as I began to suspect things weren't right and I did again pursue evaluating her - thank heavens!

One of my commenters suggested I get the IEP Book, and I did, but it looks like a rocket science manual from NASA. Another commenter suggested hiring an attorney, and that was great advice, but times four, it would have cost too much.

I don't see public school in our future at all, though I'm open to our Regional Center case manager looking into better options than we've experienced so far - a completely different campus for starters, she said. Sissy's special need seems as severe as Blossom's, but in a much different way. Their areas of function and dysfunction are opposite of each other.

I hope I'm wising up now. When one is ignorant, one may not realize it and wouldn't know what questions to ask. That's the scary part.

Saturday, October 10, 2015

The List Goes On...

The results for Sissy's speech evaluation have come in. It's worse than I expected, but explains a lot. Remember, this isn't a test of how well she speaks English, but her over all language level. I was already told by two Chinese language professionals that her Mandarin was at the level of a 6-8 yr. old. Her English is at the same level because of how her brain is processing language, not because it's a new language. She'll be 17 years old in one month.

Things to remember when looking at these results:

1. Her vocabulary in English far exceeds her vocabulary in Mandarin and Cantonese.

2. Her grammar in either Chinese dialect is well below normal, as is her ability to read and comprehend in her native language.

3. She's had 3 years of intense attention and multiple approaches to learning English.

4. Despite Blossom's intellectual deficiency, Blossom's English has always surpassed Sissy's and Jie Jie's.

The reason I am sharing these results is two-fold. First, it's an excellent example of how long it can take to diagnose a language disorder in an older adopted child and of how the child's profile information can be so wrong prior to adoption. Second, I'd love to hear from parents who have had a child at this age in this situation. Did your child catch up? Did your child have an intellectual disability, too? How did you deal with this?

Why do I ask how you deal with this? Because my child rarely understands what I'm saying to her, but fakes it so it's nearly impossible to know for sure what she understands or not. She THINKS she's understanding, but she's subconsciously taught herself to memorize what those around her say and then parrots that. Once you give her a question requiring her own opinion, she's completely speechless and lost. For example, "What do you plan to do when you grow up?" She'll say, "I can't work, I don't have any skills," which is something we've talked a lot about. Then I'll say, "Then what are you going to do?" She'll say, "Obey mommy." I'll ask her why and she'll start repeating things I've told her, "Because you love me and I need to learn and choose the right." Then I'll say, "Well, you've been making some very bad choices lately. What is your plan for making good choices?" Then she stops and can't figure out what to say next. I've learned to stop feeding her information she can parrot so I can see where her thinking and speaking ability ends.

Language:
Tests Administered: Clinical Evaluation of Language Fundamentals 4.

Recalling Sentences: Raw Score: 26; Scaled Score: 1; Test-age Equivalent:
4 yrs 9 months.

Formulated Sentences: Raw Score: 22; Scaled Score: 1; Test-age Equivalent:
<7 yrs.

Word Class-Total: Raw Score: 14; Scaled Score: 7; Test-age Equivalent: 8
yrs 9 months.

Word Definitions: Raw Score: 1; Scaled Score: 1; Test-age Equivalent: <9 yrs.

Sum of Subtest Scaled Scores: 10
Standard Score: 52
Percentile Rank: 0.1
Comments: Developmental Language Delay.

Saturday, October 3, 2015

Half Dome 2015

I climbed Half Dome at Yosemite yesterday. It was my second time doing it. My best friend came, My Firefighter, his daughter, her husband and their friend and we all made it to the top!

We made it a two-day camping trip this year. The original plan was to hike to Little Yosemite Valley, set up camp and leave our heavy stuff there then continue on to the top of Half Dome, come down and camp, then hike down the rest of the way in the morning. It would be about 17 miles round trip.

What happened in actuality is that it rained when we reached the camp site, so we built a large campfire in the designated place the second the rain stopped and played host to everyone else that had been caught in the rain as they came along the trail. It looked like a human clothesline as everyone held their wet things by the fire to dry. We stayed there for the rest of the day and went to bed around 8pm. The temperature dropped to 36F during the night. I was fine, but others, including My Firefighter, got extremely cold due to having inadequate sleeping bags. We got up before dawn and started up to the top of Half Dome. It was extremely cold and windy on the cables so I ended up passing everyone and getting the top first just to get out of the wind and cold. I laid like a lizard in a crevice, protected from the wind, but absorbing the morning sunlight until everyone else was up. We took a quick round of photos (none of which I have as they are on everyone else's cameras still) then came down. The wind was a little less and the sun higher in the sky so it was a tab bit easier on the cables weather-wise, but I find going down the cables harder than going up so I was very glad to reach the bottom.

The morning warmed up beautifully. We reached camp quickly, ate, cleaned up, packed, then headed down. I set the pace and we made it down in record time according to all the times My Firefighter has done it. We even passed the younger ones, without even knowing it. They had a 10 or 15 minute lead on us, but stopped to chat along the way and we didn't see them and kept going. We spent another 10 or 15 minutes at the car wondering where they were and then moved the car closer, hoping to meet them, but, again, they slipped by and we got a text saying, "The van is gone but it's impossible that you beat us down."

Guess we showed them! It was quite satisfying to know that the oldies beat the younger folks.

Accept for the cold night on some of their parts, everyone had a pretty good time and it was quite an accomplishment to climb that huge granite monolith again. I don't have a hankering to ever do it again, though. I'm not saying I'll never do it again, but I don't see why I would when there are so many other places to hike and visit that I've not seen yet. Oh, and I'm quite sore, but nothing as bad as last year.

The girls stayed home with my best friend's daughter, who came to babysit. They had a great time, they assured me, even the littlest one.