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.

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!

I Was High

Yep, I was high. Flying. It was lovely. Lovely!


Genea has recently surpassed her own self in greatness. She has achieved the holy grail....... *trumpets blaring*..... of all seriously disordered children. Normal. I have seen flashes of normal here and there through these past couple years. Maybe a half a days worth of just regular, normal boring kid stuff. But it has always been like a "normal for Genea" type thing.


In the past few weeks she has hit her regular low period and it was the most mild low ever. Instead of cranking lower and lower into the constant state of panic, depression and fear that usually comes on, she kept the depths at bay and pulled back out. And that is when it happened.


Normal. Wow.


Last Friday was the last day of summer school. Coincidentally I had given Genea 2 capsules worth of flax seed oil, hidden in the bread of her peanut butter sandwich at lunch. I poked holes in the enormous capsule and dripped the oil out onto the bread. The Husband came home later that day and made this comment:

"What did you do to Genea? Did you give her a Valium or something?"


(please be mindful that is a joke, we do not dose our child with stray medications)
(our lives would be so much easier and I would have nothing to blog about, that is my statement)



I looked over and there she was, I had not even noticed. What I should have noticed was that I was not noticing anything! There was a regular, calm and content child sitting in Genea's body playing quietly with a game. Appropriately with the game I should note.



Well, you all had better believe I went off the deep end myself finding more places to sneak this flax oil in on her! She strongly resists anything of the sort. All the ways on the planet to get ahold of an Omega 3-6-9 fatty acid type thing. Olive oil. Eggs. Butter with it added. Eggs with it added. Flax seeds (found out those don't take later). Almonds. I have been trying on and off to use these foods for that purpose since I have heard from several sources that the Omega's could help smooth out the barbed wire in her brain (my interpretation and summary).



I decided to play to her strengths. Genea does not like things that are new. She only likes things she has met before, and of those she is still pretty finicky. So, we have been on an --all peanut butter and flax oil dripped into the bread for every lunch -- diet for a week. And I thought it was working. A real normal kid came out for 3 whole days straight. NOT "normal for Genea" normal, but normal for any kid normal. NORMAL! Regular! Goofy! BORING! She did normal dumb kid things. One night she thought the bathroom mirror looked dirty and sprayed water all over it and everything else and tried to go to bed without mentioning it. "OH!" she says, "I forgot" (head tilt to the right, pupils dilated, dead eye stare uh huh). A few nights later I found black stuff smeared on the sink. Again, Genea got into my make up and decided to see for herself how it works. If she could make the sink look decorated.



Okay, now as I am writing this I realize that kind of thing is normal for a 2 or 3 year old but take my word for it, it is the most normal mis-behavior I have ever seen out of Genea.



Unfortunately, with every high comes a low. This awesome mom mentioned recently that she feels the regressions harder now that there has been strong progress. The higher you fly the farther the fall and this most recent fall for us has been one of the worst. Genea came after me yesterday, for probably the 3rd time ever, the first 2 being when she first arrived (not to worry, I have taken down bigger and better many times). So what was working? Was it the flax seed? Was it the end of school and now the lack of definition is throwing her off? What caused it and how do I get it back. It's a process, okay, I know. I get it, one step forward, 2 steps back. Progress and regression.



BUT WHY?



Today, she is back on track. The bottom of the pit lasted just 3 days but ooooooh was it a whopper. I swear I am going to figure this shit out or die trying. I don't want to be one of those parents dragging a 12 year old to the Mayo Clinic because they are unable to accept the truth. But that does not mean I will rule out the trip.