Friday, January 23, 2015
Apple turned 3 on Dec. 1, 2014. She doesn't speak. At all. At least, not until quite recently. She has speech therapy 2-3 times per week at two different places, and we work on things here at home every single day. Along with PT and OT. If she could talk, she'd tell you that PT and OT should really be called torture because that's how she acts when she has to do certain things, like crawl. Yes, just crawling on the floor like a baby brings on huge hysterical sobbing crying jags.
Speech? Well.... She can say about 5 words, but only says 4 of them spontaneously - sometimes. "I - am - duh - n," is what she says the most. "Xie xie," is what she's starting to say more regularly. That's all. She can say, "mama," but only when prompted.
She is diagnosed with apraxia. It's not that she won't speak, it's that she can't speak. Her mouth moves all sorts of ways, but not the way it needs to in order to form words. She can, at least, make sounds, but most of them are made using the mouth a bit differently that you and I do. She can make the consonant sounds B, D, F, G, H, K, M, N, P, S, T, W, Z and the short vowel sounds A, I, O, U and the long vowel sounds E, I, O (sometimes), U. Once in awhile she comes close to making a long A sound, but it's very hard for her.
The sounds on her speech cards that she can approximate, many with segmenting, are baa, whoa, boo, hi, bye (buh eye), peep (p ee p), up (uh p), pea (p ee), moo (m oo), bee (ee buh ee), and a couple more. She cannot say "baby" or even "beebee" or anything even close.
Thing of it is that she often thinks she's getting it right. When working on a particular sound, she gets frustrated and/or embarrassed, and/or tired of it all, so she avoids. Rolls her eyes, ignores, looks away, becomes restless, becomes obstinate, starts deliberately doing the opposite of what she's asked to do, like grabs the card instead of putting her hands down.
This impacts all kinds of things, like going potty. She can't tell us when she has to go, so she's still in diapers, though if we're home and in the same room, she's starting to point to the potty. We do have to be looking, of course, to see her do it and she is just now in the last two days starting to whimper to get our attention if we aren't looking. Of course, she still can't pull her pants down, though we're working on it like crazy. Try getting your pants down without bending your fingers. For that matter, try getting them back up!
PT - the crawling - is the worse because she's so weak. She's made a lot of progress, but she still has a lifelong battle ahead of her in many ways because of how she's physically put together. Therapy is necessary. I know it's good for her. But she doesn't. And she hates it.
All the hate, anger, frustration... it all comes down on my head. She blames me. Of course, right? I'm the mom and the moms always get the blame. Always! So I'm in the delicate position of keeping her attached, while, in her eyes, torturing her. Never mind that I'm on my hands and knees crawling with her, often with something on my back, like a real cat because Henry just can't resist a free ride, or Apple's piggy toy. I'm also crawling beside her with my arm under her trying to reassure her that I won't let her fall on her face and that I'll support her weight when she gets tired. This has never worked, but I gave it a great try for several sessions.
Our day comes down to this: Do we start the day with therapy and cry to start our day, or do we do it at the end of the day and end our day with crying? Or, can we cram it in the middle somewhere and hope that we can start and end our day with smiles and do the crying in between? Now that Apple is getting stronger, she has actually had two sessions without crying! Of course, as she gets stronger, we have to up the therapy, too, because she's no where near as strong as she needs to be yet.
Moms doing hardcore therapy with their kids and/or painful daily medical procedures know where I'm at. Who wants to make their kid cry every day? Not me. Yet it must be done. The therapist say to make it fun. Yah, right. My girl doesn't buy that any more. Probably because I was turning screws in her head and moving the back of her skull off the rest of her skull just 14 months ago! Not fun. Crawling when your little arms are sore and aching and your little hands have to stretch and bend in ways they don't want to? Not fun. Learn to climb when her fingers can't bend and she can't grip? Not fun, in fact, very scary, but it has to be done. Take socks off? Try it without bending your fingers and pretend you only have half a thumb. Try taking your shirt off with a great big head and extra short arms that can't raise up past shoulder height.
Gosh sakes, let's not forget the eye patch. Yes, Apple gets patched every day too. Fun with allergies because that poor lazy eye tears up and swells up in no time and then her eye lashes turn in and float in her eye. That's cannot feel good. Yet, if we don't, it means surgery for sure, but we can't have that surgery without the second skull surgery first, and we're trying to put that off to give the poor kid a break for awhile, because after that, it's time to do feet and more work on her hands, which means casts. At least she's stopped crying when I get the patch out. That's been a relief for about 5 days now. But how much is acceptance, how much is resignation? Is all of this damaging her spirit? I certainly hope not!
Outside of this, Apple is a clever and busy girl. She started going to Sunbeams, her little Sunday school/primary class this month and likes it a lot. She is beginning to point and gesture, it would be nice if she could sign, but again, her hands are missing a finger each and the ones she has don't bend and are very short, and her arms are just a little too short and don't come all the way up, so any signs she'd try would be hard to recognize.
I gird myself up, start each day with prayer, and hope that one day Apple will understand what all this is about and forgive me.
Recently, a mom with several bio kids as well as several adopted kids asked me if I was a "lifer," meaning, did I plan to keep my children home with me for their entire lives. My answer is no. My plan is to teach my children to become responsible, contributing, independent adults who will one day strike out on their own and build a life for themselves, come by and visit, gather on holidays, perhaps marry and have kids, etc...
But what if a child never reaches that point of independence and self-care ability? There are group home options through many special needs programs. But what if your child doesn't qualify for intellectual impairment? Say there is one category where they come up below average in (below average is still in the average range) and it blows all qualification. Then what?
Today, I'm writing from a dark place. It's the place where, when I look at my kids, I see the profound damage that is the result of being neglected babies, left lying in cribs, never cuddled, never loved, poor nutrition, abuse, inappropriate exposures, lack of medical care, lack of education, and more, more things than I can ever even imagine. The adoption books, every single one I read, failed to convey, probably because the authors truly didn't experience or know, the extent and fullness of what it's like to live with children like these. These aren't children setting fires and torturing pets. These aren't bad children. Not at all. They are good children. Innocent children. Children deserving love and family. But these are profoundly damaged children and the results of that damage are staggering, never-ending, compounding, a bottomless pit of diagnosis waiting to be diagnosed.
For every accomplishment, every step of progress, another can of worms is opened because the progress should lead to one thing, yet it leads to another and what comes up is often harder than what we just went through. For example, it's not enough that a child can read if the child can't comprehend. Comprehension of words isn't enough if the child can't understand the meaning of the words when they are put together into sentences and paragraphs. This is beyond knowing a language, I'm talking about logic and reasoning. If you do this, this will happen, right? For these kids, it's not right. It's not even consistent. Do the same thing day in and day out and they still expect a different outcome each time, not even the same different outcome each time, but different ones each time. That, by Einstein's definition, is even beyond insanity.
Change one thing in the day, just one, like do PT after breakfast instead of before, and my kids are thrown into a tailspin of confusion that lasts all day. But they appear to function very well because they are polite in public and appear engaged. Appear. Give them multiple choice questions and they already have a percentage of success built in by the nature of multiple choice. Ask them to come up with an answer on their own and they can't - even when the answer is directly in front of them in white letters on a chalkboard and I keep pointing to it using very large gestures. They don't see body language. At all. After all this time home. I have a witness to this - finally!
Where is hope? Do I see it in the faces of my children? No. I did an experiment over this last month. Every time I saw a child out in public or at church, I engaged them with either a look or by talking to them. In every single case, I got more out of that child, a stranger, than my own children give. They understood a look and a communication exchange took place, there was engagement. They conversed, answered and asked questions, even 2-3 year-olds! Toward the end of the experiment, I asked my children to observe what I was doing. They were amazed, or at least appeared to be. We also watched online videos of children receiving bicycles under the Christmas tree so they could see what a normal reaction should be. Again, they appeared to be surprised.
So, where is the hope? Is there any? Of course there is. I believe in Christ, therefore there is always hope. It is not my place to give up. I don't know what I'm going to do. Yet. But I'm not going to give up. Meanwhile, I'm nixing everything that isn't helping, from any type of therapy that doesn't show results or isn't more than what I'm already doing at home to useless check-ups and tests that won't change the course of treatment regardless of results. To quote a title of a book, "You're either in or you're in my way."
And if anyone wants to tell me this is what I "signed up for" when I adopted, or that this is "normal," save it, stuff it, choke on it. I don't want to hear it. It's definitely not what I signed up for. It's definitely not normal. But it is now my life and I am mother to these girls and that's not going to change. This is parenting in the trenches and I've recently discovered that I'm not the only one using that term. In fact, I'm in good company with a large majority of moms raising children just like mine. HERE is a link to the best article I've read so far on this subject. Unless you've lived it, you just DON'T KNOW and CAN'T EVEN COME CLOSE TO IMAGINING what it's like. You don't have a right to judge me, but your support of me in my efforts to be the best mom I can for my girls would be very welcome.
Thursday, January 22, 2015
I really feel for the commenter who would like 18" boy dolls for her sons to play with so they can play with some of their girl friends. I'm surprised American Girls Dolls hasn't added at least one or two boys to their line.
If anyone is interested in commissioning me to make doll clothes for them, please email me and I'd be happy to discuss it. My skill is realism vs. costume items, though, and I need to have the same kind of doll so I can make sure to get a good fit. I'm not cheap, but I'm not expensive either. Costumes are too time-consuming and require specialty fabrics, but if you need some Ken doll pants and a shirt, I'm up for that, or if your child's Barbie baby is woefully naked, I can take care of that for you. I'd accept Paypal payments only and it'd be the same as eBay, pay first, then I'll ship. I'm definitely up to making some modest Barbie clothes, too. I'd prefer my daughter's dolls to be dressed in something I'd wear or that they'd wear. They like that, too, since they like to play "real family." The shirts on these 18" dolls are more styled. I can easily do pretty t-shirts, which I think little girls would prefer.
Here are some pictures of other doll clothes I've made:
I'm sorry I didn't include the pattern sources in my last post, I'd meant to do so.
The little girl and baby crochet patterns are found HERE. I just love these patterns!
A simple, free tutorial of basic Barbie wardrobe pieces can be found HERE. Here are some sites with crochet patterns for Barbie and Ken clothing (the first link they are in French, but easy to translate):
Striped Sherbet Sundress
Tons for Barbie and Ken HERE.
Wednesday, January 21, 2015
I've been doing more unpacking lately, clearing any New Conceptions stuff out of the last daycare room to be worked on, which means I started unpacking again, about time after moving 19 months ago. I found the hardware for my bookcase doors - a huge YAY! And, my own personal treasure, my sewing stuff! I really wondered if I'd lost my skills, but the second I started pulling my tools out of boxes, my fingers started to itch and my brain revved up. You know that part of your brain that doesn't have anything to do with the kids or the housework, but the really smart part of yourself that you forgot you had? That's the part that revved up. The first night I sewed I made a marketable pattern - pleated Ken doll pants. Then I started crocheting. Each time I sewed, it was like a rush of endorphins and I felt better and better. I'd emerge from my sewing studio with a huge sigh of contentment.
I discovered some super neat free videos on how to make Barbie stuff, such as this one on How to Make a Deluxe Cat Condo and that really got my brain going because, even though I'm all grown up, I still love Barbies. I've discovered that most famous apparel designers do and many actually design specialty Barbie clothes to this day as well as having done so as their first design interest early in their lives, which is how I got started in pattern design and drafting. I also discovered patterns to crochet itty bitty outfits for Barbie-sized babies. They are very fun to make and very quick, which I love since I like the satisfaction of finishing a project sooner rather than later.
I've discovered several new niches in the art world from those who strip the factory paint off Barbies and repaint them in an extremely realistic way, to those who design fashion doll clothing so real they look like real men's apparel and all sorts of other things, like miniature sculpted dolls so realistic that I can't stand to look at them because they look like miscarried real babies to me. In my market research, I discovered that adult collectors are going for realistic or way out there. I like realistic, so after watching the above video on making the deluxe cat condo, I designed my own more realistic one, using similar materials, cardboard, toilet paper rolls, felt, hot glue and yarn. I also designed and made the Moses baskets. Mine again are going toward the realistic look whereas the one I saw in a video was Barbie-pink and not so professional, but mine are still made out of cardboard, hot glue, fabric, ribbon, yarn, and my own idea, using burlap of the natural cardboard color to simulated a woven basket.
Ken doll also got some underpants! Finally! Researching that was hilarious. If you want a good laugh sometime, just look under images for "men's underpants" and see what comes up. No pun intended. Really! Truly!
As I make prototypes of patterns or just sew someone else's pattern for fun and relaxation, I create a pile of things my girls can earn with good behavior. A special ed teach gave me a great idea today to actually pay them with our fake, but realistic, money, and have them buy things from me with it, like these items for their dolls. Then they begin to understand better how money works. They also get to do some crafts. Sissy is particularly interested and has been invited into my inner sanctum several times to observe me at work. I've also signed all three big girls up for sewing classes at our local fabric store starting next month. They'll be with other girls their ages and learning a new skill!!!
When do I have time for all this? When I'm supposed to be sleeping!
Monday, January 19, 2015
China is a culture that doesn't value individualism, but the good of the many. In an orphanage, there isn't any such thing as individualism to an even further extreme. None of my girls have made a best friend. If any would, it would be Blossom. Jie Jie was surprised I even thought it was an issue and doesn't see the need of a friend. Sissy wants a friend, but does nothing to make friends. The comments about Sissy improving her speech by being around her peers seems to make sense, but, she just doesn't care, and after 1.5 years of attending church with the same group of very nice girls, she has yet to do anything one-on-one with any of them regardless of how many times I've tried to set her up. In fact, when I asked if she speaks to anyone spontaneously, she said yes. When I ask her what she says, it's, "How are you?" When pressed, she admitted that she doesn't say anything else unless she's asked a question. AFTER 1.5 YEARS in the same class with the same girls - and they are VERY nice girls who really reach out to her - and 2.5 years home!
In a group of same age peers doing a specific activity, all my girls can fit in an enjoy themselves. However, any side conversations other girls are having, are beyond them. If I put any one of my girls together with one other girl, they don't know what to do, though Blossom comes close. Just the other day, we got two neighbors to come over. My girls brought K and P in and displayed them proudly in front of me. They were even excited. But they didn't know what to do next. I told them to show K and P their rooms and toys. They did and then were done. No playing ensued. Jie Jie actually left and went back outside. I rounded her back up and told her she had to stay with our guests, especially since P would be a great match as a friend, at only 8, but they are on a more similar developmental level with similar interests.
Since getting the girls, there has been improvement, but it's not as much as I expected or hoped for and it's concerning, but, as I'm finding out, a sad norm.
I have been observing something that I'll throw out there: Kids who have been adopted older (way older), who spent all their lives in an orphanage, don't really know how to be kids. I mean, the books all say it, but even with other kids to learn from, they still don't learn it. I don't mean that they don't know how to play (which was true at first and my girls had to learn that, too), but it's the whole child-adult thing that mine just don't get. They don't know the role of adults at home. My kids still struggle with this. Because I don't have bio kids, they didn't see regular kid behavior modeled at home. It was shocking to them to discover that I didn't go to bed when they did, or that I ate food after they were in bed, or watched DVDs that they didn't get to watch. Sissy still struggles with the fact that I want to go out occasionally to a movie without any kids with me or that I want to spend time alone with other adults. This struggle is compounded by the fact that she's a teenager, a time kids start asserting independence and breaking away from parental authority. Thing is, though, she's still VERY unskilled and behind where a "regular" 16 yr. old should be.
I have been in contact with other moms of kids who were older at the time of adoption. They struggle with the same issues. One moms also hears from a ton of families who are really struggling, many who are disrupting and struggling to find new placements for their kids, such as a teen boy addicted to porn. Her words were, "These kids just aren't making it."
Another adult child whose parents adopted several children said, "I had an ideal childhood. My parents were great, just amazing. I don't even recognize them now." This person went on to explain that the adopted children didn't respond to any "normal" parenting methods and/or strategies so the parents had to come up with other methods that were, in a nutshell, less joyful and more rigid.
I'm living this. I have a teen who still rages like a 2 yr. old on occasion. Exactly the same. Laying in the ground, kicking, screaming, throwing things, etc... for a long time at a time. Used to be almost daily, at first. Now it's about once a month. Normal for an institutionally raised adopted child, but waaaay outside normal for a teen her age.
We forego so many of the joyous aspects of childhood and parenting because my kids simply can't do it, can't understand it, won't enjoy it, or won't do it, or someone gets hurt trying it (such as normal rough-housing-tickling, one of my kids gets way too rough during this sort of play and can cause injury or it brings up anxiety that leads to nervous-driven roughness).
Then we add in the special needs. I'm discovering that auditory processing disorder is the hardest special need I've encountered from my kids so far (and, believe me, our special needs are on the high side of challenging) - because one can't understand what I'm trying to say to her, therefore, she can't reason, and she's forgetful. It's like the movie of the man who had a ton of first dates because his girlfriend had short-term memory loss. Every time he took her out was like the very first time doing so. My spd daughter will recite the house rules, then turn around and break them because she doesn't understand that they apply to her! It's not that she's being naughty either. She truly has no reasoning or application ability. I ask, "Why do you choose the wrong each time?" Her answer, "Because I decided that." My reply, "Why did you decide that?" I told you, she says, "I decided that."
I'm also learning that there are more processing disorders than sensory or auditory and we've got several of them, yet to be specifically diagnosed. As we go into further rounds of testing, it's all really coming out. Every time I go through this I brace myself because I know another diagnosis is coming our way. Like many who have adopted internationally, my girls are extremely challenged and parenting them is extremely challenging. All parenting is, I understand, but this kind of parenting is done from the trenches.
Saturday, January 17, 2015
Sissy still won't put the "d" at the end of food. It's an issue of laziness. This is at the dinner table last night...
Me: What is foo?
Food, she says.
Me: No, it's not. Food is food. Why won't you say food?
Because I want to be fast.
Me: It's just as fast to put the "d" on the end. Do we really need to have this conversation again?
Me: So, from now on you'll say food?
Monday, January 12, 2015
We came into the Christmas Season with a rush of birthdays and the festivities never ended. The group photos two posts down are from our church Christmas party early in December. We fit in some outdoor ice skating, getting our tree, and playing at the fun place where we got our tree, followed by Christmas morning and a day of fun.
After choosing our tree, we went inside The Big Red Barn and played in the mini village. The girls did much better at the shooting gallery this year than last, probably because we had the expertise of a good marksman helping us this year! Each time one hits a target, the objects move, lights go on and bells ring.
Once home, I thoroughly enjoyed letting my man take the tree off my van, feeling rather pampered that I didn't have to do it myself for the first time ever. It sure is nice to be loved!
Then, amidst making treats to give to friends and take to the firehouse across the street, came Christmas morning. What a special time for all of us. This year, we celebrated Christ's birth by drawing closer as a family unit. My Firefighter came over at 5am and helped me get the big things under the tree and finish a little bit of wrapping. Then he and I snuggled on the sofa, enjoying a quiet moment by the light of the tree before waking the girls at 6am. In they came, and I'd love to tell you that the bicycle was received with whoops of glee, but I must be honest and say it was virtually ignored. I'd often said to My Firefighter that much of the joy of parenting and "normal" childhood experiences is lost on children who were raised for many years in institutions and he finally experienced that in a major way when, expecting enthusiasm over getting a new bike, Blossom (and the other girls) pretty much ignored it - completely. She was much more enthusiastic later about receiving a "boy Barbie" so she could play "family" with her dolls. Later, when she tried the bike and saw that it was just her size and not scary, perhaps, she began to like it more.
In the interest of time, I did not take photos of opening gifts. Soon, the delicious aroma of baked French toast wafted into the living room, gifts all opened, we adjourned to the dining room and stuffed ourselves, then, armed with another French toast casserole, My Firefighter headed to a downtown station to work the Christmas shift. Later in the afternoon after trying the new bike and Christmas dinner alone with the girls, I packed up some treats and we went over to Station 4. It's one of the oldest stations in town, two stories, so it still has poles for the firemen to slide down and a racquetball court where we each got to take a turn playing. Sissy got a few lessons on how to fly her remote control flying sphere that she'd gotten as a gift, My Firefighter being quite the expert at flying model planes. The racquet ball court made the perfect test area for it.
It's always a little sad leaving My Firefighter at work on special occasions, especially on Christmas, but we all such great family time in the moments we had together that it made this Christmas one of the best ever.
Thursday, January 1, 2015
I can't find the charger for my camera battery, otherwise I'd have posted our Christmas day pictures already. When I find it, I'll post about it. We had a wonderful Christmas Day and several wonderful days this month. I'm looking forward to posting the pictures and getting it all down in writing.
Meanwhile, I wish everyone a Happy New Year! Today, well, yesterday Dec. 31, was my birthday. It was a low-key day with sleeping late and making pancakes at lunch time followed by ice skating and dinner out (so I didn't have to cook again). The girls didn't get why I didn't have a cake, but honestly, after four birthdays in 5 weeks, and two major holidays, I would have dumped the batter on my head if I'd had to make another cake already. My Fireman would have made me one and I'd have loved every crumb, but his father recently passed away and the memorial is this weekend and he's organizing it long-distance and leaving town to go there this morning, so I'm glad he didn't burden himself with baking me a cake. He did join us for breakfast and spent most of yesterday with us, though, which we all love! When he left today he said to the girls, "I'll see you next year!" They protested wildly and got rather concerned until I explained to them that next year was tomorrow and turned their worry into laughter.
Friday, December 12, 2014
Yesterday was My Firefighter's birthday. He was on duty, so I made a nice lasagna dinner and a cake, loaded it into my wagon, and we all went across the street to eat in the firehouse. It was our first time eating with the other firefighters at their table and it was pretty fun. They sure know how to do dishes and cover and put food away in a jiffy. The only alarm that went off were the station smoke alarms when My Firefighter was browning the garlic bread and it caught on fire in the oven! I know, too seriously funny, right? He liked the cake I made, my most ambitious by far and really fun.
Monday, December 1, 2014
After watching two sisters have birthdays these last 2 weeks, Apple knew exactly what to do, so she was already trying to blow the candles out before I even set the cake down.
This was a blurry photo so I used an artistic filter to change and preserve it since it's the only picture I got with all the girls.