Boring stuff

Seriously, boring stuff coming ahead. I have been reading and researching and have found some things out that I did not know. So I am going to share what I found because I thought it was significant to my daughters' circumstances-- Genea that is, not The One I Gave Up Caffeine For.

Start throwing your eggs.....now.....! I have always found neurology interesting. When I was in the 7th grade, about 100 years ago, I did a report on Autism. It was facinating to me that a child could start out with no problems and develop, for no evident reason, a disorder so severe it could cut off speech, interactions and interest in the world, after he turned 2. When I worked in a group home, there was a middle aged man who was "non-verbal". He had seizures a lot, wore a helmet and did very little other than sit in a daze. As far as I know, his whole life had been that way. Anyway, like I said, he did not talk at all. Made very little noise even, no grunting, moaning, laughing, none of it. But when this man had a seizure, he could speak in clearly articulated, grammatically correct, full sentences. "I would like a hot dog now, please" things like that. Then you have the stroke. Our wonderful child psychiatrist who had a stroke a few months back has recovered greatly (in another state-- booooo)but has not regained everything. Example, he can count as well as anyone when it comes to numbers on just about anything. But he cannot count change. Coins. He cannot add them up. Okay, so like I said, throw eggs at me if this makes me an egghead because I do think it is so interesting!

So I ordered this book, "Clinical Neuroanatomy Made Ridiculously Simple"- - HA, that is really the title so you can see where I might be drawn to it! By Stephan Goldberg, M.D. Since I think most of Genea's problems are in her brain, it seemed like a good idea to understand more about it. I have read so much research and so many books about attachment, bipolar in children, adoption etc and the thousand different problems that can come fully equipped on the child of your choice, and I have a good understanding of the "what" of what goes wrong, and the "why", but nothing on the "where".

Moving right along here, I came across a section about nerve pathways in the spine to the brain and here is what I found that was interesting- there are different paths for different nerves. There are 3 nerves that travel and cross over into the brain at a specific spot together. Those 3 pathways handle the specific information that Genea struggles mightily with every day, and there they are, climbing the jungle gym together! They are the main sensory systems here:

Pain- temperature. Feeling too much pain, or not enough. Feeling too hot, too cold, or disproportionate to the actual climate. Like sweating when it is 60 degrees out. Genea doesn't feel it when she gets overheated from too much activity, she just keeps burning and burning until she is physically stopped (well not that much anymore but for sure used to be that way) Genea only gets cold in extreme temperatures. She does not feel pain unless she really knocks herself into something, hard.

Proprioceptive- stereogenesis. Feeling where your body is in space, such as you know where your wrist is without looking for it. Stereogenesis is being able to tell what something is only by touching it. Genea is extremely awkward, clumsy and clutzy and I have often thought she looks like she does not know where her body is compared to where the furniture is. I don't know about her stereogenesis, I keep forgetting to check on it.

Light touch. Obvious what that is, but I never knew it was routed to the brain separately from medium or strong touch, or that it is connected to the other two pathways above. Genea will flip inside out if you lightly pat her arm or gently tousle her hair. But she will melt in front of you if you rub lotion on her or firmly massage her legs for example. I guess people who are paralyzed can sometimes still feel light touch but not strong touch for this reason.

Okay, so these three all party together (trying to make it interesting) and then twist around right before they shoot into the brain from the thalamus to the cerebral cortex with each other on board. This is what struck me, that the 3 are connected, a team, at this crossover point. That Genea has significant issues in all 3 areas.

SO WHAT DOES THAT MEAN???
I have no idea. But it jumped out at me and screamed.
It fits.

Does anyone have any idea's? If you can see that I misunderstood or got it wrong, let me know that too puuuuh- lease. Maybe everyone already knew this but didn't tell me?

Do other kids have the same combined problems in this area? Can you have a problem with one of these pathways and not the others? It is like having a key without having a locked door. I don't know what I don't know and that is a lot. It just struck me when I was reading- these things are connected. This is a piece. I think.

Questions, incessant unending questions....

One of the first times I realized Genea might be having more than transitional issues, is when I read about RAD and the inclination to chatter incessantly. Nonsense question after nonsense question. AHA! Went my brain- we have that!
Of course, most children go through a stage where they appear physically unable to stop their lips from flapping like pancakes. It begins to feel like someone is slapping you up the side of your skull after a bit. *Smack* Smack* Smack* and your head is going *thud *thud* thud* and all you want to do is scream shuuuuuuuuuuuut uuuuuuuuuuuup! But, you can scream shut up all you want because it will not make a lick of difference. Yammer yammer.
I realized one day that there was an identifiable difference between Teena's unending senseless chatter and Genea's unending senseless chatter. Genea could stop. Without bribing and without threatening, if I told them to go sit on different couches and be quiet, Genea could do it, Teena could not. So I began to think, hmmmm, this appears to something she is far more in control of than I would have guessed.
Lately, Genea has been on a nonsense question streak. It always starts with Mama? Can I ask you a nonsense question? So it is a two for one. And the nonsense question is almost always a "no" answer. And I hate it. I feel like I am rejecting her 95 times a day because she asks these questions all day long and maybe 5 of them I can squeeze a yes into. I am being set up, 100 times a day and 95 of those times I am being directly led to a negative. It used to be that every. single. one. of the questions that was a "no" led immediately to the Wango Tango. That thankfully has lessened considerably. THANKfully.
I think this is Genea's way of connecting with me and her Daddy. If we are being forced into engaging with her, she is alive. She exists if we look at her and respond. She is not invisible or being ignored when she is hungry or needs a hug. She has someone who might take care of her if she can just force that person to acknowledge her in some way, any way. That is my opinion anyhow, I think it is an orphanage holdover.
A few months ago, I started answering a nonsense question with a nonsense question of my own. I have 2. I reply with "Is it dark outside?" when it is light, or vice versa or for some variety I might say "Is your hair purple?", both of which make her think, then say no, then she moves on. This has been moderately successful as it cuts waaaaaay down on the Wango Tango one can enjoy if one responds with "no" too many times.
So yesterday she came home and her friend had been absent from school. She asked if she could have some candy to make herself feel better (thanks you- know- who). Of course I said, no. We don't do snacks after school. I found last year that Genea would not eat her lunch (that costs 2 freaking dollars) if she had a snack to rely on, but absolutely would eat her lunch if she knew that was all she would get until dinner (rigid thinking ya' think?). A few minutes later she asked again. My phone rang, she asked could she get it for me (always no) and asked who it was before I even answered (again, not permitted and forcing my attention to her instead of the call). So I decided to try something I had been thinking about.
I pulled out a jar of these connecting blocks, as seen above, and counted out 14. Those 14 would be the number of nonsense questions she could ask for the rest of the day and when they were gone, no more questions. Regular necessary questions did not count, though only I would determine what was necessary and not. I thought, 14 nonsense question would leave her without any more questions right around 7:00, as it would be 5:00 when we started this, and she goes to bed around 8. See how I think these things through? So I could make my point and there would be a minimum of suffering. I just wanted her to get a sense of how often she really does this. How often she makes up a question just for attention. Just sheerly for the sake of making her Daddy or I stop what we are doing, shift our attention, engage and communicate and then create a negative atmosphere when we have to say "no" to something she did not want or need anyway. There would be no consequences and no rewards, nothing at all. Just to see.
She bawled. But she understood.
The picture on top is how many she started with yesterday. Yes, there are only 13 in the picture, I took it after she lost the first one.

It is now 3:00 on Saturday. We started yesterday.

She clearly has waaaay- haaay- ayyyyy more control over this than I EVER would have thought.

Hanging in....

I am hanging in there with fingertips grinding blood into the volcanic ash turned rock turned mesa. OOOOOH, my.

Shit has hit the fan. It splattered all over the walls and into the lighting fixtures. There have been blatant attempts to give my daughters an eating disorder. Obvious, in my face, using the phrase "I'll say what I want to say". Despite my husband and I asking my mother in law several times over the past year to stop trying to control, manipulate, guilt and shame our children into eating their food, our words have wafted into the wind. Deliberately and specifically making an issue out of the food they eat over and over.

Sadly, I just cannot cope in a passive aggressive world. I am unable to make those sly nasty comments the older generation is so prolific with. That way of insulting the crap out of you while smiling and using nicey-nice voice. Unfortunately, I am a direct and to the point sort of person. So I have been. Direct. To the point. It seems my skill for clarity is just not appreciated. I don't know why.

Anyway, there will be no further attempts to give my daughters any type of eating disorder. So far, since 3 days ago, it has held.

In other news, it has been cold here in New Mexico but pretty. The girls are doing fabulously. Some kids like Genea freak out when on a trip away from home. If there is a background of trauma, especially trauma in primary caretaker, the kids can really flip out when going to another house. Other houses in the past have resulted in new parents. Genea is the opposite. She flipped her lid before we left. Oooooh my. She held a refresher course for us in every single gross and obnoxious behavior she ever invented. It was nice to be reminded how far she has come. So, once on the plane to leave for our trip, here comes Uber Genea! The best, most calm and pleasant and helpful, well mannered, thoughtful, kind, quiet child you have ever met. I believe this is to ensure we do not leave her anywhere. Look how great I can be! Make sure you keep me! In fact, I have a backpack puppy leash for Teena and Genea made me go get her monkey pack leash out for the airport. I am serious, it is so cute. She is 6 for crying out loud! She can take it on and off herself! She hands me the leash every time it leaves my hands for whatever reason. I had expected to get some rude comments from people since she is obviously so big so I had a response all ready: "Listen lady/mister, you have NO idea what you are judging here" etc. curse, etc, but no one was rude! Several people said, what a great idea, and a few even asked politely where they could get them. Unreal! I could have used to go off on someone. Why does the world conspire against me?

Teena is of course fine. You could drop that child into the rain forest without shoes and she would manage. She would talk with the parrots and take a nap with the iguanas. I have said this before, I know, deal with me a minute. I am so proud of her confidence and independence. I love that she has always been safe and secure and is so capable and adventurous. Then, when she stays overnight at her grandparents house and we go to get her the next day, she barely flicks an eyeball to us before going back to her fascinating activity, without even saying hi. Little shit.

I went yarn shopping in Taos at http://www.lalanawools.com/ . Get a bucket out first for your drool so you don't short out your keyboard. Their website is a little janky, but if you can find it, check out their Forever Random colors. Then, go rob a bank so you can buy some. I blew my whole yarn budget so cannot go yarn shopping in Sante Fe. However, I did not tap into my handbag budget at all, nor my Liz Claiborne budget. Wheeeeeee! Going tomorrow to the fancy outlet stores. Although last year, Liz had clothes surely beat by the ugly stick so I am not going to get my sorry little hopes up. Cut price, seconds and returned items at Coach will more than make up for the sad Liz clothes.

This has been my first chance to get to the computer for some time. I have been reading blogs in my minutes of free time and keeping up with everyone by reader but have not been able to get into comments as my time is being sucked into a vortex from hell (yeah, no I have no idea what that means but it sounds really bad which is my point).

I'll be home in a few days. I have a LOT of great stories, one that includes Genea being so brave she decided she never needs to be brave again. She has done it. LOL!

Ding ding ding

Genea found out when we are going on our trip to New Mexico.



All my own fault. She and Teena were watching tv for 5 minutes so I could talk to my mom on the phone and I told my mom when we were leaving and I heard Genea hollering "Yay, we are going on Wednesday Teena, YAY!!!". So for the past several days we have been dodging the Molotov cocktails hurled at us with a lot of different emotions. However, now that we are at a point where Genea has a half second of control, the half second to think before the action takes place, now we can get in there in that half second and get down and funky with it.



At dinner the other night, here comes Genea to the table sporting Look #3 all over her beautiful face. Not the dissociated look, and not the incessant crying look (numbers 1 and 2). Number 3 is the half awake dopey regressed sort of look. Where her tongue hangs out of her open mouth and she looks like she might have just woken up, if that were true. Her eyes are dull and mildly vacant. She climbs into her seat and starts off- loading Crazy immediately.



"Ewwwww, I don't like thisssssssss". Sigh. Yes you do, you have had it 100 times but that's okay just don't eat it then.
Genea 0
Mama 1

(for the record, she ate it)



Interrupts thru dinner, pouts when reminded. Chews with mouth open etc. Drinks out of her cup and dribbles an entire mouthful of milk down her chin and onto her clothes as if she were vomiting. Why?

"It tastes spicy and I don't like it". No.

"I always do that at school". No.

" I was trying to get the milk into my bowl". Nice try Genea. Are you trying to make us mad? (NO!) Are you feeling nervous inside and so you are trying to make things nervous on the outside too? (NO!) Well, it won't work. We are not going to get mad at you.

Genea 0
Mama 2



Here comes Look #2, also known as Cry Face. Precludes all crying but does not necessarily lead to crying or meltdowns anymore. Shoots out the elevated frustration sound with scrunched down eyebrows and cramped up mouth, ehhhEHHHuu WAAAAH uuhERR ehhhhh! Continues with dinner.



*COUGH* choke HOOwah *GAG* Genea chokes on her milk and spurts it all over. Sigh. Genea, are you still trying to make us mad at you? Do you want us to yell at you? Because we are not going to do it. Sometimes you act like this when you feel nervous but everything is okay and we are not mad at you.

Genea 0
Mama 3

Cries.

GENEA. Are you serious? You are going to sit there and cry because no one will get mad at you??? Here, hold my hand. Come on, give my hand a hug. You will feel better. Come on, don't just leave my hand laying here looking all silly alone on the table!

Genea 0
Mama 4

Genea. Why are you crying. Tell me why.

Because I want to sit on your lap and I cahaaahaaaaan't.

Okay, we can fix that. I can move my chair back. Done.



Now, it rarely works out like this. In fact it warrants its own blog post and a scorecard because I am pretty sure this is the first time I have ever really fought off The Crazy combined with an incoming Wango Tango and come out ahead. In our house, this was a massively successful but hard fought battle!!!!

Will it happen this way next time? I hope so. Is there a good chance Genea will expand on her repertoire and come up with new stuff? Oh yeah. Do I hope like hell that we will get the chance to divert it all? Oh YEAH! I know she was not crying because she wanted to sit on my lap the whole time. She is still a little girl and a lot of times she does not know why she is upset and will just think up something random to hang her feelings on. However, it is a huge sign of progress in my mind that she was able to express and ask for something that would help her to feel better!

In the past few days that she has known when our trip would be, she has also been back up on the toes. She has been sleeping a lot more. Last night she developed a rash on her back, neck to butt. And of all the dreaded, dreaded activities of stress, she pee'd on herself during the day. The first time that has happened in at least 5 months. Ever since Potty Boot Camp back in the spring, she has been dry as the desert on a hot windy summer day.

What's funny, funny odd, not funny haha, is that she has been otherwise delightful. Pleasant, nice, polite. Definitely fits of demanding and the usual incessant unending nonsense questions thrown in for reminders sake. (Mama? Is this the table you want me to clean? Mama? Should I use a towel to wipe this? Mama? Which towel? Mama? Do you want me to wipe up this pile of goo? Mama? Where should I put this garbage?). But generally cooperative and calm. Enjoyable and enjoying herself.

Less Crazy, more Genea. Woo Hoo!

The kid we fight for (and other news)

Genea is on the upswing. Every few months she goes through a period of stellar behavior. She is as close to a regular kid as I think is possible for her. She is playing with a full deck. The lights are on, someone is home. The 6 pack has 6 cans. The switch is flipped.

She relaxes. She can wait her turn. She is funny! She laughs at jokes with a regular, normal sounding laugh. She catches on. She can put 2 and 2 together and get 4 instead of "banana". Her eyes are clear and there are no bags. She cares. She asks the person who tripped or fell or whatever, "are you all-right"? She doesn't have to ask over and over what is for dinner because she is confident it is coming, whatever it is. She can wait. She can hear the word no, and keep going. She stays on the topic of the conversation she is having. She ate a small portion of food at dinner and did not compulsively ask for more.

She is a 6 year old. She went to her friends house with explicit directions to play only outside. I could not see her and found her inside their house. She sits where I sit every time I get up. She asks questions she knows the answers to for our attention. She interrupts. She tattles on her sister. She jabs her new Barbie dolls hair an inch from my face so I can "see" it. Normal. All normal 6 year old stuff.

She is still toe walking. She falls and knocks stuff over and runs into things that are not there. She has to be able to see me or she will jump up, indeed she will levitate, to find me. She will follow me so close I literally trip over her, often. She paces back and forth, unable to focus on one thing to do. She is clingy.

This is it. This is the real kid that is in there, under all The Crazy. This is who Genea can be, what we fight for. The constant pace of manic- panic and fear is what we usually have. Even when we are having a good stretch, we always have that stress, the nervousness, the strain of mania and impulsivity, just to a lesser degree. But every once in a while, for a week or 2 if we are lucky, the real kid comes out. A regular kid who has been through a whole lot.

So what does that all mean? Does a kid with Reactive Attachment Disorder have periods of typical behavior? Does a kid with Early Onset Bipolar Disorder show periods of lucidity? Could ADHD cause all of this and her problems are related to hyperactivity and impulse control and does that go away once in a while? She is not free and clear. This break is a significant lessening of symptoms but many still remain. They are manageable. They are what you would expect from a child who has been through her situation. I don't know if an accurate diagnosis would make all the difference or if it matters and maybe there is no one thing that would explain everything. Would it change what we do and how we approach Genea? WHAT THE HELL AM I SUPPOSED TO DO AND HOW DO I MAKE THIS STICK?

In other news, The Husband is really sick. Now, Teena is really sick. And The Husbands parents are coming for a visit on Saturday, until Tuesday. Genea was mildly sick over the weekend but seems to be better. I am the only one left standing and I have suspicions that will not last much longer. Coincidentally, every time The Inlaws come out here (they live out of state), The Husband is either: A. Really Sick or B. Really Busy. This results in me having to do all the damn work for their visit while he slops around making a wreck of everything complaining that he is: A. Really Sick or B. Really Busy. Girls, beware that if you marry a man for his mind, there is a good chance he will spend decades using it to get out of household responsibilities!

20/20 episode on Adoption

Last night, a TV news program, 20/20, did an episode on international adoptions that have "difficult" results when the child turns out to have mental- emotional- behavioral disabilities. Here is the link and you can watch most of the program on their website. http://abcnews.go.com/2020/story?id=6322100&page=1
I don't even know where to start.
The main focus of the program was the Mulligan family, who adopted 2 girls from Russia, then went back rather quickly and adopted a boy. They showed pictures of the parents at their wedding and they were quite striking as a pair, very attractive. 3 or 4 years later, they are both a wreck. Overweight, visibly saddened and with rigid expressionless faces, they seem to realize that what they have done out of altruism has taken them to a path few would choose, and it is permanent. The oldest girl and little boy were diagnosed with Reactive Attachment Disorder (RAD)as well as other mental health issues. One of the 3 children does well.
My problem with this show, is that they aired footage from the oldest girls first week home. They showed her pacing around the house, crying and sort of wailing, and at one point had to pull her out from under the bed. They showed another incident of her sitting on their couch crying as they filmed her during a 54 minute meltdown. THAT IS NOT A DISORDER THAT IS A CHILD WHO IS SCARED AND OVERWHELMED.
Then they showed the little boy having a tantrum of sorts. Having had immediate problems with their first adoption, I have no idea why they would go back for another child. And I really have no idea who would have let them do this. Anyway, he was about 4 or 5 and they showed him crying and sitting at a wall and giving the dad dirty looks while the dad was filming him. The boy turned to face the wall, and the dad insisted he turn around and started to count to 3 but the boy turned around on 2. Again, this is the action of a child who is probably angry, probably scared, and probably overwhelmed. This does not a disorder make. That is my most significant problem with this show that was otherwise ok. They made it look like parents who could not handle a child crying and not listening constituted an attachment disorder. Those kids may very well have had a long list of problems but that is not what they showed, those behaviors are not, repeat NOT what drives parents to disrupt an adoption.

When Genea first got here, she ran away from me in the store. She would not hold my hand, I had to drag her to the car and if she got free she would try to run through a parking lot in traffic. She pee'd on herself, on the couch, on the floor, wherever. She picked the paint off the wall and I suspect she ate it because I never found the chips. She took off her seat belt in the car, and took off Teena's too. I had to buy a special mirror for my car to be able to watch her in the back seat. At home, I walked away for 1 second and caught her hitting Teena. Just hitting her. No tantrum, no reason, just hitting her. Every great parenting idea I had was quickly stomped over and useless. Say 5 positives for every 1 negative. Tell the child what TO do, not what NOT to do. Ignore the bad praise the good. Please.
She woke up 2-3 times a night yelling NO NO NO over and over. Woke up in the morning around 5 am give or take an hour and would wail on and on, crying and screaming to make sure everyone was up with her. She looked like a kid with the most raging ADHD ever, she moved constantly. She would asked to be picked up and within 3 seconds would be squirming and kicking at me to be put down. She would reach to hug me and went rigid when I hugged back. She body slammed into me all day. She crawled on me or jumped on me or lurched at me with elbows and knees digging and jabbing painfully and had no response when I tried to tell her that hurt. .She did not stop talking and asking nonsense questions. Is that my lunch? Are you making my lunch? Are you using bread for my lunch? What are you putting on my bread? You are using a knife right? You need a plate right? Is that my lunch? Are you going to make me my lunch? Are you getting out the bread now? I want 2 pieces of bread, make sure I get 2 pieces ok? This went on with everything, not just food. If I did not give the answer she wanted, meltdown. And she binged on liquids. She would drink water and keep chugging it and chugging it until she started to choke and turn red and she would keep chugging it until she could not breathe anymore and was gagging and spraying water everywhere and still kept trying to get more. She stole things and broke them and hid them. She lied, and would tell a lie with the truth in front of her. It was maddening to ask her what is the truth. And I would spend 20 minutes assuring her I was not angry, I just need the truth. And you are not in trouble, nothing bad is going to happen, I promise. Just please tell me what really happened. And without flinching, without breaking eye contact, without a change in expression, she was adamant that she was telling the truth. She wasn't. I would catch her trying to hurt our cats, in minor ways. Her meltdowns went on every day. 5 or 10 or more, for 6 months there was not a day free of meltdowns. If she did not get what she wanted, meltdown. And she would ask for things she knew she could not have, like a glass vase, and when I said no, the wailing began. Meltdown. And there was no middle ground. She went from 0 to 120 in a second. There was no warning, she would perceive a trigger and then BAM you have a full blown meltdown. And I almost forget the dissociative episodes. Every once in a while, she left the building completely. Her eyes were open and she was sitting up but she had no reaction at all. I could pick up her arm and it would flop back down. Conscious, but unresponsive. And let me say this, Genea's behavior, as challenging as it was- is- can be, is probably moderate in severity. She probably meets the criteria for RAD. For some kids, it absolutely gets worse. She will not approach strangers and sit on strangers laps. She will not walk away with anybody who smiles at her. She does not poop on herself or smear it on walls. She does not use weapons. She has never actually used threats towards us. She is typically not aggressive to people or things. She doesn't hoard food or hide it. And I don't know if Genea has RAD, or Bipolar or Oppositional Defiant Disorder, or Conduct Disorder, or what. Doctors tell me, there is no precedence for her. Her physiology and neurology are so scrambled that there isn't a name for it. There is no one good answer for her. And that is why, while I think the concept of the program on 20/20 was great, it did not even touch the tip of the iceberg. If they wanted to do a show on this issue, they should have gone balls to the wall and done it right. The children that were shown, those are not the children that get disrupted from their adoptive families and that behavior is not what destroys their families. There IS help, and there IS hope. Sometimes it works. Not always. And the disorder is not limited to international adoptions either, in any adoption preceded by abuse and/ or neglect and the child is going to an unknown family, there WILL be challenges.
Phew.