A Good Day!

Nik's teacher made my day by writing in his daily planner that he had a GREAT day and worked VERY hard. Wow! She also said he wanted to talk to me regarding a playdate. Wow again! Maybe he's settled into the routine of the new school or they've learned what makes him tick and how to handle him. Or just as likely, he's just having a good day and I should leave it at that and just enjoy the feeling. Is it possible all that fish oil is actually doing something for his nervous system?Whatever the reason, I'm one happy mama right now. 

living perpetually in the present

I've been doing some thinking lately about the processing problems that are becoming so much more evident and decipherable in N. as he grows older. It occurred to me, probably because of something I read (maybe on Keri's blog, see link under the links heading), that he seems to live--most of the time--in the present moment, and not in a good way. Most of us experience time as a continuous thing, with our present actions linked with what happened yesterday and the day before, and we also bring our ideas and predictions about the future (consequences) into our daily actions and thoughts. We do all this without being conscious of it, of course. It just happens, thanks to normal processing. With N., though, each time he does something, like sneaking and eating all A's Valentine's candies from her little classmates this morning, it's as if it's a discrete, separate situation that is not influenced by the past or consideration of the future. We used to drive ourselves nuts wondering why the normal consequences didn't seem to stop problem behaviors, why he did the same thing over and over and over and OVER regardless of what had happened the day before, or even the hour before. The only exception would be if there was some sort of immediate cueing or reminder (and even then, he might choose to ignore it). He experiences his daily life, and each problematic situation that he encounters as if it's happening for the first time and is not linked to anything outside itself, certainly not to any learning about the situation.

This link explains why typical behavioral-based strategies don't work, because they rely on the individual having the capacity to bring the memory of that past experience and the prediction of a future experience into the present moment and apply that memory to what's happening at the moment:

http://216.109.125.130/search/cache?ei=UTF-8&p=fasd+memory+generalizations&fr=yfp-t-501&u=www.boysandgirlsaid.org/adoption/family_matters/pdfs/FM_Feature_Aug.pdf&w=fasd+memory+memories+generalizations+generalization+generalized&d=dkqoiXDuP_BS&icp=1&.intl=us

We're all so accustomed to the behaviorist methods of raising children--reward or punish. What on earth do you do with a child who responds unpredictably, at best, to either reward or punishment? And if he does respond to it, it has to be so tangible and immediate. It requires near-constant reminders, management, cueing, and it has to be done in just the right way to avoid meltdown or explosion.

The experts say change the environment, because you will not be able to change the child. I'm beginning to think there's some truth to this advice. On the other hand, we can't completely give up on trying to teach him "life skills" and functionality; we can't resign ourselves to the fact (at age nine) that he will never be able to live independently. I know it's a possibility. I'm not that naive. And therein lies the challenge! We have to balance these two competing realities: the knowledge that most of his problems can be traced back to neurological deficits rather than willfulness, and the equally important knowledge that he must improve his functionality over time if he ever hopes to live any sort of independent and successful life and think of himself as a capable and successful person.

Think I'm finally getting it

After years of therapy, counseling, testing, meds, special education, special parenting, reading, obsessing, diagnosing, experimenting, I think I'm finally getting it through my head that there is nothing new out there. There is no magical technique, approach, therapy, diagnosis, or parenting strategy that is going to fix N's functioning. For three years or thereabouts, we've been seeing the experts. We've collected diagnoses. Yet he's still just as volatile, unpredictable, and poorly regulated as he was three years ago when we started down this road. Talk therapy just doesn't work, period. Oh, I'm sure it's probably worth something for his long-term personality development, for helping him to figure out how he fits into the world. It's probably helpful in some way, eventually. But for changing the behaviors? Worthless. Money down the drain. The fact is, traditional mental health approaches really haven't done a damn thing for him, or for us. The problem is, they're all built on the assumption that what happens in the therapist's office can actually be applied outside that office. And for N., that just isn't possible, or it's rarely possible, at least. He can promise the sun, moon, and stars in therapy or even during a heart-to-heart with one or both of us or some other adult. And he means it sincerely. He can articulate what he did that was wrong, and sometimes he can even articulate WHY it was wrong. He can talk about other ways to handle the situation next time. Then he can walk out the door and thirty seconds later, do the same thing all over again. 

It's all about the processing. It just doesn't transfer, all the talk and the resolutions. When he's under any kind of stress, or when he's stuck in a mental rut, or confronted with something he misunderstands, or overwhelmed (which happens easily), it's as if he's never learned anything about "self-control" or "using your words" or blah blah blah. He reverts to the level of an angry, sometimes violent, toddler, and all that talk and work and therapy and counseling? It's inaccessible. 

We haven't called his therapist in the past couple of months, just can't justify throwing any more money her way. She's great at her job, but his brain is just not able to make use of anything they do. She makes him feel great, and he likes her, likes the games they play together, but he can come home and be just as outrageous as he was before the appointment. What good is all the self-realization in the world, and all the self-esteem and all the rest, if he ends up sending someone to the hospital or getting taken into custody? 

His brain doesn't process things in a way that the conventional mental health treatments can benefit, apparently. The meds work for a while, some of them, or seem to, anyway. Then he hits a side effect he can't handle, or it stops working. It's so discouraging that all this time and effort, and we're seemingly back where we started with him. Granted, we understand better how to manage him, his triggers, why he's doing what he does. But we can't stop it. 

So the realization has come. We don't need more therapy, more medicines, more parenting books or classes or advice. What we need is human resources--help. The only thing that helps reliably with him is direct adult supervision, preferably one-on-one. He needs this, and we are going to have to rely increasingly on other adults to manage him. Beyond that, I don't want to speculate on the future. 

It's not a knowledge problem anymore, or even a psychiatric problem, per se. It's a brain processing problem, and the only thing that is going to help in a big way, help enough to really matter, is more adult management. I think it really is just about that simple. 

My Valentine

It was eight years ago, on Valentine's Day, that we met our son in a "baby house" in Samara, Russia. I remember being overwhelmed with emotion while sitting in the "music room" with small laquer-painted chairs, piano, and toys held behind high, glass cases on the walls, waiting for them to bring our Kolya to us. When they brought him in, he was swaddled in a blanket, and they called his name, then put him in my arms, stiff as a board. And that was that. I have a photo of Matt and N looking into each others' eyes, face-to-face, for the first time. And that's how I became someone' s mother.

I remember so many things from the trip, but especially the afternoon we first had him completely to ourselves, staying in a fancy hotel in Moscow (the Savoy), and venturing out in the cold to a grocery store that sold wonderful chocolates and about fifty different kinds of yogurt and kefir, it seemed. It was magic, pure magic, euphoria. I remember it as one of the happiest moments of my life. I remember him lying on the bed in the hotel room, mimicking Matt putting on deodorant with a sly, silly, joyous little grin on his face. We couldn't have been happier with him. He was our golden boy.

I look at him these days and sometimes wonder, where did he go? What the hell happened? This morning, he refused to get on the bus and Matt ended up finally having to take off work to take him to school and meet with the teacher. Typically, he was excited the first hour or so, to be home from school, and with that focus, he offered to help me with chores. Of course, it didn't last long. The initial excitement of it all wore off rather quickly, and we were right back to the no! and shut up! I told him he needed to change his shirt before going to school because the one he was wearing had large, crusty food stains all over the front of it.

"No!" and not even in an angry way, just a dismissive, obnoxious, clueless way, stomping through the house, laughing too loud, talking too loud, talking too much, and all the rest. I admit it, I felt disgusted. It was normal, everyday behavior for him, but every once in a while, I just stop and look at him, and I can't even reply, because after all, what the hell can I say? We're screwed here, Son, and there's no future in this. I don't know what we're going to do with you. How much longer can I take this until I snap? Then I remember what I know for certain: If he could choose to be any other way, he would. Ten minutes later, he's asking if I love him and why he has to die today, and no, it doesn't make any kind of rational sense, but I know what he's saying to me: I hate it, Mom. Why am I this way? I don't like the things I do. I'm bad. And he says all these things explicitly pretty often. If I started crying over him now, I don't think I'd ever be able to stop.

Happy Valentine's Day, Son. I don't know where we're going, and I don't know whether we're going to be able to save you. I don't know where life is going to take you and how much more pain awaits us all. Happy Valentine's Day, anyway. I'll try to keep looking for that golden boy that's still there somewhere, deep down.

No bio sib, Chinese adoption

First, the girl in the photo is from Guangdong province, also southern China (Guangzhou, formerly Canton), and almost certainly not A's biological sister. Also, the woman from the Hunan Sibling Find group seems to be looking for another He Xiao, from what I could gather, and trying to find girls who were in FTIA foster care. According to the SWI (Social Welfare Institute/Orphanage), she was never in foster care, although some of the babies in our group had been. Still, it's a good idea to have this group, and who knows? The efforts of these parents might end up reuniting biological sisters one day, which would be a truly wonderful thing. A good book to read for in-depth, detailed, statistical information about female infant abandonment in China (Hunan province, in particular) is "Wanting A Daughter, Needing A Son." It was written by an adoptive mom, but one who spent considerable time in the province, meeting with families and obtaining factual data on the problem. According to her research, most baby girls who are left in public places are second daughters. The rural families are allowed to have two children, so if the parents already have one girl, well . . . there's tremendous pressure to produce a son, so if you can only have one more child and the baby's a girl, they often feel they have no choice but to give the child up--either to a relative or someone they know who doesn't have children--or sometimes to flee with the child, going "underground," or as a last resort, leaving the child in a public place where she will be found and taken by the authorities. A's history is her own to share, not mine, but I can say that she was left in a place where she would be very quickly discovered and have immediate access to nurses, doctors, etc. Our guide, Ike, said the birth mothers often wait nearby, in eyesight of the baby, until someone comes along and discovers her. What a heartbreaking thing it must be. The best thing possible would be for things to change in China so that parents were able to keep their children.

I know a Chinese-American woman whose mother died when she was very young. Her father was left with three (I think) girls to raise, or maybe two already, and he didn't think he could manage to care for another. They were farmers, I believe. So they gave their youngest baby girl to a local childless couple, who adopted her (either formally or informally). Informal adoption in China is very common and well-established. This woman (my friend) was very bright and ended up attending special schools and ultimately coming to the US for high school and college education. She is a very together, determined, energetic, and hard-working woman who says she was cooking for her family at age five. I have admiration for her. It's obvious she grew up no stranger to hard work. She's also a very kind and giving person, who has been especially sweet and caring to A, bringing her Chinese treats for the Moon Festival, etc. We're lucky to live just down the street from them. Their son is actually the one friend N has managed to keep for an entire year now. He's a sweet kid, very laid-back, who rolls with the punches, the perfect friend for N.

Bio sister in China?

I received an e-mail today that made my heart skip a beat. A parent group called "Hunan Sibling Find" is looking for a He Xiao, adopted between 2002-2004 from Changsha #1 Orphanage in Hunan province. I e-mailed the person back immediately, of course, telling her we were the parents of He Xiao Ling, adopted 12/04 from Changsha #1. Is it possible they've actually located a bio sibling of A., and how could they possibly know to look for her? The only way I've ever heard of this happening is the parent noticing a strong resemblance between her child and the picture of another. And then there's the fact that "Xiao" combinations are pretty common, and she might not be the only He Xiao Ling adopted during that time period. So I'm not getting my hopes up, but still, I can't wait to hear back from the group.

So I guess my eyes are playing tricks on me, because I went to the yahoo adoptive parents of China group, and the little girl who's featured on the home page looked just like A did at her age, and I mean, the mouth and nose look identical to me. Eyes are a little different, but really, they seem to have an uncanny resemblance. The girl in the photo wasn't identified, so I posted, asking for more info. about her and also put up some photos of A at that page in the photo album section. Odds are about a billion to one that this child would be related to A, though the age would be about right, since she looks one or two-ish in the pic and A is four. When I browsed some of the other albums posted, however, I had to admit that several of the little girls had features resembling this child--the adorable little button nose and cupid's bow mouth. I still think the resemblance is striking, but I'm sure I'm just seeing things and have bio sibs on the brain. Wouldn't it be amazing, though? I heard of a couple of other families this happened to, but these girls were identical twins, I believe, so the parents knew the minute they saw the pictures.

Here are a couple of photos of A at that age, one in China and one after several months home, just for grins.

I'm not goin' to school!

Haven't had a school refusal morning for a while, so I guess we were due for one today. All was fine, actually better than fine, until I told N it was time to get off his computer and brush his teeth. The bus would be here in the next ten or fifteen minutes. I should have given him a little more warning, probably, knowing it can be really hard for him to switch agendas. As the author of The Explosive Child (a very useful book) describes, kids like N aren't able to switch agendas and activities the minute an authority figure snaps her fingers, and it isn't defiance, per se, or a lack of respect, or a lack of understanding. It's the PROCESSING. He doesn't process information as quickly as most of us, in general, and tends to get stuck. The author describes a car engine going into vapor lock, and that's a pretty apt description.

We tried the "basics" and "priveleges: speech: "There are basics and priveleges in our house, N. Going to school is a basic. Like washing your hands before dinner. Like obeying your parents. Computer time is a privelege, as is TV, etc. If you want the priveleges, you have to do the basics. Besides, it's the law that kids have to go to school. I'll give you a couple of minutes to think about your decision, about whether you really want to give up all your priveleges." For about three minutes, I thought it was working. He sat and thought for a minute.

"I'm still not goin' to school! I'm tired!"

After five more minutes of crying, he really was tired. And to be fair, his days are long with the after-school program, and he probably was tired. He gets mentally fatigued by most afternoons, when it comes to school, anyway, and it shows in the way his behavior becomes much less controlled and much more chaotic.

Matt had to tell the bus driver he wasn't riding this morning. Even Matt's threat to carry him kicking and screaming onto the bus didn't work, not that the bus driver would allow a kicking, screaming ninety-pound boy to get on the bus in that condition, anyway. Offers to pick him up early from the after-school program didn't work, offers to call his teacher and tell her to let him rest a little this morning, or take it easy, anyway, didn't work. Nothing worked.

Finally, Matt and I decided we had no choice. By this time he had fallen apart. We let him lie down and rest for several minutes, then Matt took him to school. Which is going to make Matt late for work, and later coming home today. It makes me sad to see how he was so willing to let Matt take him to school, and how happy he is when Matt can pick him up, or pick him up early. He does love the attention, and he is very attached to us and needs us emotionally. I wish we could give him more time and attention, but the reality is our family is the one he belongs to and we have to work within the reality of our family. We have two other kids, and that's that. Besides, his daily management and . . . handling, takes so much effort and attention, that really, there's not much left over for daily "fun" attention and one-on-one. I like the idea of a PCA (Personal Care Assistant) that another mom uses for her son with FASD, whose behaviors resemble N's to a striking degree. She hires local college students, ones who are taking education coursework, and trains them in how to manage her son, and they're in the home to manage him one-on-one. I know that's what we will do in the future, but I wasn't sure what to call such a person and where to find such a person, but training an intelligent, responsible college girl sounds like a great way to do it.

On another note, I'm trying nutritional therapy in small ways to help his overall brain development over time. I'm giving him a hefty dose of fish oil, since the children's recommended amounts on the bottle are nowhere close to the amounts that have actually produced results in the studies. I don't worry too much, because it's just fish, pharmaceutical grade, tested for mercury and stuff. I'm also upping his multivitamin dose and trying to improve his diet in general. And of course, there's the fact that the meds have made him gain an obscene amount of weight, and unopposed by stimulant, he eats huge amounts of whatever is available--I'm talking entire boxes of crackers and tubs of cream cheese, and still ravenous. I'm also having his teacher give him as much exercise as possible. They have workout equipment at his school, and I'm going to see if he can get extra time on it, since he has gained an unhealthy amount of weight, and is probably clinically obsese by now.

And here's what we have in house: healthy crackers, applesauce, pretzels, fruit, cereal, lowfat milk, sliced turkey, whole wheat bread, lowfat cheese. No cream cheese, no sweets, period. Breakfast is supervised, lunch is sent to school, teacher has been told no candy, no food as reward, period. We'll see what develops.

Sweet baby S is asleep in the carrier, on my lap, and A is making Hello Kitty paper dolls on the couch, happily wearing her bifocals with the nifty new strap with pretty pink beads. I hope they straighten out her eye turn. The thought of my baby girl in surgery really freaks me out. Something about having a daughter makes me more protective, I think, of her. I hate to brag, but she's doing really well in just about every way, and she's come an awful long way since that severely underweight, bruised, neglected baby with no muscle tone, who at 13 months could barely roll over, much less sit or crawl. For the first day or so, she had this traumatized look on her face that reminded me of the picture of Jackie Kennedy on Air Force One with LBJ being sworn in. I'm so thankful for, and totally in love with, my daughter. Nothing has come easily with her, either, but thanks to positive parenting and lots of smiles and praise and closeness, I have a girl who actually wants to please me and is proud of being obedient and says "Yes, Mom!" all day long. (Not that she doesn't have four year-old moments, but not so many anymore.)

Then this . . .

Our priest, Kate, has taken N under her wing. A couple of months ago, she came up with the idea of letting him be a junior acolyte, in training. Anyone who doesn't get the whole ADHD thing might think, how could he possibly sustain the focus to do something like that and make it through the entire liturgy? Anyone who really does get ADHD knows this is perfect for him. Something about having that special job, getting to wear the robe and cross, helping Kate and the adult acolytes, and all the adult attention he gets while doing it, puts him in that hyperfocus mode that kids with ADHD, paradoxically, can slip into. In novel, special situations like this, he really shines. And I mean that. The first Sunday he served, I looked at him and thought, My God! He looks just like an angel. He was beaming with pride the entire service. I was holding back tears, so proud of him at that moment and more than that, so happy to see him so proud, so proud of being successful at this important "job." He doesn't serve every Sunday. If he did, the new would wear off and before long, it wouldn't work anymore, but once a month or so is just about perfect.

Will all of this end up meaning anything in his life? I have faith that it will. He doesn't know a darn thing about the Bible, has told me on several occasions he doesn't even believe this or that about God and creation, and certainly doesn't believe Jesus rose from the dead. The very idea is ridiculous to him. But on a deeper, nonverbal level, I have to think it all means something. When I would hold him at bedtime and talk about his baptism, when we lit his baptismal candle the night he was so depressed and just watched the flame, when he prays at mealtimes and mentions Jesus (though, again, I don't know how much of any of it he gets), it seems to matter. I hope it matters. I knew a long time ago that my kids, all of my kids, would need something much bigger than me, at some point in their lives. I hope all this churchoing and praying ends up comforting and encouraging them when they need it. I'm doing my best, anyway, the best I know to do.

Doesn't he look like an angel, though?

Stimulants: Catch 22

We seem to go through the routine every few months: N's ADHD symptoms are GREATLY reduced, amazingly so, by his stimulant med (Focalin, currently). For a while, it's a miracle drug. He can go from swinging from the chandeliers (just about literally), yelling nonsense, throwing things around, screaming "NO!" to every little request, unable to follow directions, tormeting his little sister and laughing hysterically about it, calling us the most awful names--to a calm, sane, orderly, normal-acting child within forty minutes of taking the pill. Remember the Gadarene Demoniac in the New Testament? The lunatic who was running around terrorizing the neighborhood until Jesus healed him, and the next time he shows up, he's clothed and sane, talking as if nothing ever happened? Well, the stimulant affects N like that. Yep, it's that dramatic. The down side is, well, the side effects. After a while, we notice that he gets REALLY paranoid about things, and the oppositionality gets worse and worse. One of the milder blow-ups the last time he was on the stim involved him screaming at Matt to "Go kiss a monkey!" Charming. Then there was the time recently when he was angry at Matt and told Matt he should really be grateful to him (N), because "I COULD have called you a jackass, but I didn't!" His new school has really helped his vocabulary development, obviously, but that's another story.

At any rate, we always end up taking him off the stim because the side effects become too horrendous. We'll never know for sure whether stimulant use or dropping his mood stabilizer (or some other cause) resulted in his deterioration at school this Fall, to the point that he was transferred to the special ed school, but it's possible. Supposedly, kids who are Bipolar (still not 100% convinced of that diagnosis, but he certainly has the symptoms) can't always take the stims, and neither can people with anxiety disorders.

But without the stim, he's nearly uneducable in any school setting--very difficult to get any work done, very "disruptive," etc., only pays attention for short periods of time if it's one of his pet interests. And the hyperactivity and general difficulty at home proves so difficult to manage, that we end up putting him back on the stim. He's now at a very low dose of Focalin, which means the rebound is back, when the meds wears off and he's high as a kite.

So the point of all this, I suppose, is that it still amazes and saddens me to see how he can change to "normal" the minute the stim kicks in, and often becomes very polite and considerate, not at all belligerent and obnoxious. It's crystal clear to me that this is how his brain is supposed to work. This is the arousal level his brain should naturally maintain, but it doesn't. It isn't a problem with behavior, or motivation, or character, or environment. The stimulant shows me, for a little while, what he could have been like, should have been. And he knows this, too. I remember the times, after we've taken him off the stim, when he's begged us to put him back on, so he can "be calm" and "not get in trouble." Sad, very sad.