Saturday, May 24, 2014

Time for an Update on the Girls

This is a very hard post to type because it's none too pretty. Life around here has been HARD! Now that my girls have learned English and we're more settled into our new home with our new little one, certain things have become glaringly apparent. My girls have learning disabilities. To what extent is yet unknown since the testing has only just begun, but I have a feeling they are going to turn out to be extensive. On top of this, I'm fighting Kaiser every step of the way to get local care for my children. We have been sent to two different locations for care, each three hours a away (6 hours round trip) when there is a state-of-the-art children's hospital only 20 minutes up the road from us here. There have been mistakes with typing my baby's blood wrong, typos on my phone number so specialists couldn't reach us, a specialist referral to cardiology meant for another child that was in my child's name and many, many more. Most pressing is the fact that Apple doesn't have skin where she should due to that MRSA infection that I'm sure started out as just a little bumped head that got infected and then inoculated with MRSA during her hand surgery hospital stay. Here's the reality:

Now you all know I handled turning those screws and for those who know me personally, you know what I can do medically, but seeing the distractors where there should be skin leaves me feeling sick because her skull is right there, too. Undoubtedly, they need to come out, but where and how is another issue. One doctor says she can do it, the local surgeon, but she wants to assume all care, meaning do the anterior cranial remodel this fall, but she's not as qualified or experienced as the Kaiser surgeon, so I don't want her to assume all care, just get those things out of Apple's head. But, she also shaves "everything." I can't allow Apple's head to be shaved. She cannot wear hats because she overheats tremendously and her head is too big to get a child's size so the adult brims are WAY to huge on her. We live where it's regularly over 100 degrees every day of summer and Aperts Syndrome causes Apple to sweat PROFUSELY. Dehydration is always an issue for her. Imagine a nice freshly healing incision covered in buckets of sweat. Yes, I can keep her in the house, but her hair grows so slowly that she'll never see sun all summer long and she still has to ride in the car, and we all know that babies in carseats sweat no matter how high we turn on the AC.

She is going to begin speech therapy. She only says three or four words and not very clearly: done and down, which sound the same, nite-nite, hi, up-of and yay. She doesn't even say mama, though I've heard her, but it was babbling in her crib early on and while crying. At 2.5 yrs. it's time to get some help. Of course, Kaiser gave us the referral for speech back in Jan. but it never got processed, so I had to mention that in my formal complaint, too.

Apple learned to walk in Feb. and has progressed well ever since, despite having fused toes and foot bones and being in full length casts on both arms for a month. She learned to go up the stairs on her play slide properly today and slide down on her own. She can hold on to something and step into her pants. She's delightful and imitates me and the girls, learning very quickly just as a healthy toddler should.

Jie Jie just had an extensive speech evaluation and the results are vindicating for me since I've been saying for over two years that something is very wrong with her receptive and expressive language skills. To qualify for Kaiser to pay for speech therapy, the cumulative score on the evaluation must be 7% or less. Jie Jie's score was -0.1% Yes, she got a negative score. Some of the areas tested at the level of a 4.5 yr. old. I did cry. At least it explains why Jie Jie's English hasn't progressed in over a year and why she's struggling with her school work (K and 1st grade still) and why she's having some serious behavioral issues at home pertaining to her daily health care, why she doesn't know any songs and why she can't remember what she's learned in Sunday School.

On the positive side, she's wonderful with her baby sister and truly enjoys playing with Apple and helping take care of her.

I've requested formal evaluations for all three older girls by the school district, but I've been told that with their backgrounds, there is no way to get an accurate result of a real learning disability (being behind isn't a learning disability) and since they've never seen kids "like mine," meaning with their backgrounds, none of the three school psychologists I spoke with have much of an idea what will happen regardless of the test results, but they all recommend I take the girls for testing at the Regional Center.

Blossom has been very difficult lately. She refuses to try, skimps and cheats on anything she can get away with, from PT to chores to school work, wants all the rewards and privileges her sisters earn through hard work and good behavior, but she also struggles academically. She loves to read, but she can't seem to use the knowledge she gains and she stills counts on her fingers doing 1st grade math. She can't sound out words (she memorizes them) and can't spell or even come close to spelling phonically. Jie Jie has the same problem. Most of all, Blossom doesn't seem to be able to understand cause and effect or know what's going on socially. She's very social and chats with anyone, finds a "friend" easily, but doesn't see what the social group is doing and often moves through it doing her own thing.

Blossom's most obvious talent is that she likes to sing and can really carry a tune. Her English isn't good enough yet to really show how talented she is, but I'm hoping she'll always like to sing and be interested in choir and performing. She would love to perform and be applauded and get to bow and receive flowers, etc...

Today I asked the girls to write a simple story - about anything at all. Jie Jie wrote instructions on how to take care of a baby, instead of a story. Here's some of what she wrote, which was all lined out and unorganized with arrows pointing where some sentences should go, a sentence on each line rather than in a paragraph, etc...:

"How we teccare the baby. We nede to feed the baby food. We nede to tege the baby how to woke. We to put the baby for a nep. Do you like baby? yes. The ed."

Remember, she reads well at nearly 2nd grade level, yet this is her writing and spelling. Here's a translation: We take care of the baby. We need to feed the baby food. We need to teach the baby how to walk. We need to put the baby down for a nap. Do you like babies? Yes. The End.

A same from Blossom, who, of the three, did write something most like a story:

..."and I say. can I play with you gus, they said yes I can play with They, and we playhitg and see and we aslso play monok brak, and we go to fried hoses sweing..."

She meant: "and I asked, "Can I play with you guys?" They said, yes, I can play with them. We played hide and seek and we also played on the monkey bars, then we went to our friend's house to swing."

This is from Sissy's work:

"Iast (Last isn't spelled with an L, but with a capital I) year we went to China audop. My liltt sister, she was 1 years oldd. also she had shosis need. nexsday we went to office do pepr, we wait at office. nexsday we ride airplan 18 hur I in airpanl watching move and sleep eat. and be reding go home."

Translation: "Last year we went to China to adopt my little sister. She was one year old and also has a special need. The next day we went to the office to do paperwork. We had to wait at the office. The next day we rode in an airplane for 18 hours. In the airplane, I watched a movie, slept and ate, then got ready to go home."

Most concerning to me isn't the bad spelling, it's the fact that she spelled the same words differently each time, such as airplan and airpanl and went and wen and enph and enpht for elephant. Other animals included tige for tiger and garamol which I can't figure out. She should have been able to spell paper with an A since we've covered long and short vowel sounds many, many, many times.

One of the things Blossom did recently really blew my mind. She didn't kiss me good night so I went into her room to find out why. She asked, "How did you know?" I didn't say anything, wondering if she was joking. "Who told you, mommy?" I asked, "Who told me what?" "Who told you I didn't kiss you good night?"

My mind was reeling, but I controlled my impulse to fall on the floor and cry and said, "My eyes didn't see you come into the room and my cheek didn't feel your lips kiss me."

Blossom said, "You're so smart, Mommy!" Then I went into the other room and cried. Surely, surely, she can't be that unable at 13.5 yrs. old?

Then, last night I said to Sissy, "Go take your pill and tell Jie Jie to take her pill, too." These are the same words I say every single night. Every night, the girls get out their pills and swallow them. Last night we were going out to dinner. I get into the car and what do I see, two bottles of pills sticking out of the diaper bag. What's this, I ask. Sissy replied, "You said take my pill." I asked, "When I say take your pill, what do you do?" She said, "Put it in my mouth." I asked, "Then why didn't you do that tonight when I said take your pill, when that's what you always do?" She answered, "I think, TAKE it." Meaning, take it with her to the restaurant.

Sissy does her chores well and without being asked. She has learned to express her anger clearly and in a positive way when she needs to, such as when Blossom is being a pesky little sister and teasing in a mean way. She still doesn't know how to take advantage of everything I've provided for her to contribute to her personal growth. She's amazed at all one of her friends can do, who was adopted after she was. When I pointed out that I offered her the very same things and she wouldn't have anything to do with it, she suddenly had that "ah hah" moment and teared up. Sissy is very good with Apple, too. She is truly trying to make a success of her life.

I think the biggest intellectual disadvantage Sissy and Blossom have had is that they were not taught or allowed to think in China. I have to tell them what to do and how to do it every day. If they've done their chores and all the things they need to do, they don't do anything. Well, Blossom as least will start to play, but Sissy doesn't do much at all. I did buy her a kit to make bracelets out of rubber bands and she really like it, but she doesn't do much else, despite all manner of things at her fingertips that would add to her personal growth in a large variety of ways. We have toys, crafts, physical fitness stuff, a piano, cd players with tons of music, basketball hoop, badminton, jump ropes, trampolines, skates, bikes and the list goes on and on and on... I had to teach them how to explore the yard and play in our mini "forest." I still have to remind them to stay out of the street.

One can look at these things with humor and say, "All kids are like that. They all do things like this sometimes." Yes, I know they do, but my girls do things like this all the time and I'm very, very concerned. At first, I chalked it up to not knowing the language. Now I know that it's far more serious. Please pray for us as we navigate what lies ahead!


Almond Tea said...

K, I applaud your efforts to keep digging and searching to get the help your girls need. I know you to be a researcher by nature and you'll find the answers and solutions you are looking for. Unbundling the typical kid stuff from the adoptive kid stuff from the learning challenged stuff is a huge task. Know that I pray for your strength, wisdom, and particularly Blossom's healing every day. You are both so special to us.

Anonymous said...

I completely understand how you feel. Two of my four internationally adopted daughters have similar struggles. They were adopted at 10 and 11 years old and have been home several years. They were in institutions that did not offer intellectual stimulation of any kind. They have almost no independent thinking skills and cannot play for more than a few minutes without direction and encouragement. They are both eager to please so I do feel that they would perform better if they could. It almost seems that the window of opportunity for language growth and learning a new way of living closed on them several years ago. They made a few strides when they first came home, but then the growth slowed to a crawl and in some cases came to a stop. It is very frustrating because it seems like they should be able to learn more given all the opportunities, supplies, great teachers, older sisters, etc. that they have. But it just doesn't happen. I have had to face the reality that they will always have to live in a supervised environment. Good judgment and independent thought just don't seem to be on the horizon for them. I haven't given up, but I have adjusted my expectations and my original "plans" for how I thought things might unfold for them. I am praying for your little family. I am also a single mom so please pray for me too. I've been so glad to know that other parents are walking a similar path to mine. God bless you!

Jennie said...

Thank you for sharing so openly. The 3 older girls may be listening to their own drummer, so to speak. As "Anonymous" wrote, expectations may have to be modified appropriately. As to the Kaiser challenges, so very sorry to hear. Wondering if there is an objective health advocate that will also be able to assist your efforts? Is there such a person in your community or city - maybe someone in Social Services? Just a thought. I think of you and your precious girls, and Henry often. May our Lord provide the patience and encouragement. May He continue to work in your girls' hearts.

Maureen said...

As far as health insurance issues, keep fighting. Believe yourself. Believe your instincts. After a very long battle, with many appeals, I got approval for a medication that no one had ever been successful in getting this specific insurance company to pay for. (This information was withheld from me until after I won, for fear that I would give up if I knew the history and odds. It is an orphan drug, so I believe this stat is true). If all goes well, next week I will get a shipment. It will be 11 months since I started fighting.

The state that I live in requires a child that English is not the native language for the child to be tested in both their native tongue as well as English. I have love many (and strongly disliked a few) of the people that have given my children services through the school district. My experiences with the district itself and the testing to get those services has been a nightmare. With both of my children. So far, the fight has been worth it because when a mutually agreed upon plan has eventually been settled on, I've been happy with the benefits it brings my boys.

Good luck! Keep fighting! Keep loving! I pray for you to keep your own faith (in God, in yourself, in your decisions, and in your girls)

Anonymous said...

For your older girls, have you:

1) Had their hearing tested?
2) Had them tested for Central Auditory Processing Disorder? (Kid hears fine, but can't make sense of the words)
3) Had them tested using the Vineland Adaptive Behavior Scales? (Vineland is useful for assessing kids whose IQs on paper seem high but who just don't seem to be able to put it into practice. It's often used to test kids with FASD -- they're IQs are often average or even high, but who simply can't put what they know into practice on anything approaching a regular basis).

If you've had the girls tested and ruled those things out, you might want to try Integrated Listening Systems therapy (you can buy the earphones and videos on ebay very cheaply). There's next to no scientific evidence on it's efficacy, but it's inexpensive, does no harm (kid watches videos for an hour a day while wearing special headphones) and I know several kids (including one of mine!) for whom it worked wonders. Like, after six months (1 hour ILS, 3-4 times a week) she was a completely different kid -- maybe it was because those six months constituted months 18 to 24 that she was home, that she turned 16 (14-15 yr olds are awful; in hindsight my adopted kiddo wasn't that much more horrible than my 3 bios at that terrible, terrible age) or that the ILS actually worked. Or the placebo effect kicked in. Or K finally got her act together. It a miracle occurred. Who knows? It was $150 well spent.

After nearly two years as an awful/indifferent student, K decided to try. To take the initiative. She finished high school as an honors (!) student. She's now 20, has her beautician's license (9 months of community college) and a job she loves.

K said...

LOL! I have the Vineland test in my hand right now as I type this!

K said...

Hearing is perfect, still trying to get the rest evaluated. How wonderful to hear that your daughter is now doing so well!

Lynnea said...

I've appreciated this post so much. Looking into the vineland assessment test.
You rock K ;)
Strength and grace to you this week.

Anonymous said...

Anonymous, my son also has Central Processing Disorder. He can hear fine, but something wasn't connecting. Three tests were administered, 2 he did great on, 1 he failed miserably. It has helped me advocate for him so much better.

Anonymous said...

Another adoptive parent wrote this on her blog recently perhaps their are insights that might help you in your search:

In part below, more at link provided

TUESDAY, MAY 6, 2014

So you think you want to be a therapeutic parent?
I belong to several groups that are about trauma parenting. Over the past few years, there has been a shift from what most call "traditional parenting" - which (very simply put) is parenting you child with the goals of achieving your preferred behaviors while eliminating "unacceptable behaviors" , and therapeutic parenting - which is parenting your child with the goal of healing the hurts of their trauma to then effect changes in their behaviors which stem from their traumas.

For us - we had "traditionally parented" our first children with relative success. We tried it with our children from trauma background - and it was a dismal failure. The more we tried to control them, to manage their behaviors, the more out of control the children and the parents became.

We needed a change - and found therapeutic parenting.

It was life changing.

It was the hardest thing we have ever taken.

It worked.
My favorite book is "Beyond Consequences, Logic and Control" by Heather Forbes - and all .
Much more on website
I hope this helps and please keep reaching out. You need support and info, many places online from adoption community, perhaps a therapist to help you cope and find the resilience that is being drained little by littlĂȘ.

K said...

Thank you, Goldmine. I actually read the blog you recommended and started reading Therapeutic Parenting right when I read it. The book is a free PDF available online. It takes Parenting the Hurt Child a step further, which I really like.