Alphabet Soup, Without a Spoon

I really want this blog to be about my daughter primarily. I want others to understand her better. Well, what I really want is others' complete unconditional acceptance and love for her, but that's not likely to happen in this lifetime. So, instead, I'll settle for at least opening up some minds to maybe making room for her, not being so quick to judge. For myself, I'd love for other grown-ups to stop thinking they know better than me when it comes to my daughter. Because they don't. I know this will be a lifelong struggle for me, but I'm willing to struggle with daily it if it means enlightening even one person.

So, on to the soup. I thought I'd start by telling you about Anastasia's alphabet soup. Well, that's what it looks like when you lump all her diagnosis together. And, don't get me wrong, I do not post these to garner sympathy. I simply want others to get a better picture of my daughter's unique challenges. Educating others about these things is important to me. As overwhelming as they seem when put down on paper, in the end they are just labels that help to explain my daughter, but they do not define her.

Let's see, there is, of course RAD (Reactive Attachment Disorder, for any newcomers), and then the PTSD ( Post Traumatic Stress Disorder), and then the SID (Sensory Integration Disorder), and now her doctor is suggesting some OCD. That's alot of letters for one little girl! There are also the non-alphabet ones like her Nystagmus, which is an involuntary eye movement which usually results in some degree of visual loss. This also affects her reading ability. Then there is the Rumination Disorder. Rumination disorder is an eating disorder in which a person brings back up and re-chews partially digested food that has already been swallowed. In most cases, the re-chewed food is then swallowed again; but occasionally, the person will spit it out. This disorder is caused by early neglect, which causes the child to engage in self-comfort. This is causing her remaining teeth to rot and also causes alot of discomfort in her throat. So far, there is not much that can be done for this.

There are many other minor concerns, but the above are the ones that make her life most difficult. Even the most educated people in our sphere sometimes underestimate the power of these issues over my daughter. Case in point: I heard my daughter's school would be conducting a fire drill last week. From experience, I know that these drills elicit a very intense trauma response from my daughter. She cannot even think when they happen-- she works completely from a place of fear. Well, I tried to let the school social worker know that, but she was quick to acknowledge she had a handle on the situation, and I trusted her. I assumed that she would take Anastasia out of the building before the drill. I was wrong. When I came to pick her up later that day, the social worker wanted to speak to me at length about Anastasia's 'inappropriate behavior' during the fire drill. What did my daughter do? She refused to listen (she couldn't listen), she 'talked back' (she was terrified) she kept chattering (common RAD symptom when dysregulated), and once outside, she barreled into the parking lot away from the masses, instead of 'following proper protocol' and staying with the group (of course she did!)

Now, this woman is a clinical social worker. I respect her. I have a close working relationship with her, and I informed her to the best of my ability, even giving her books on RAD and trauma response. I don't think she read them. So now, she has informed me she is putting Anastasia on a behavioral contract. Why does she not understand that my daughter cannot contract to behave through a traumatic experience, such as this fire drill? It is not humanly possible for her. Think for a moment of being in the midst of a crisis. Your life is in danger. Do you do your best thinking then? No. For Anastasia it is far worse.

I thank God for Heather Forbes and her books for teaching me the science behind my mother's intuition. Science proves my daughter cannot think during these episodes. (I'll post more on this later, don't you worry...)

Anyway, I am becoming preachy, which I do not want to do. I need to go pick her up from school shortly. (She is on a modified program). I'm meeting with the social worker next week, and am bringing Anastasia's therapist along. I'm hoping she can help bridge the gap. Please let me know what you think. Any good ideas of how to get the social worker to see things from my daughter's perspective?

Chipmunk #7

There is a chipmunk living in our kitchen, behind the refridgerator.

Puck, our cat, brought him in about three days ago. Yes, we've tried to catch him and put him back out into 'the wild', but it's just not working. He's simply way too fast for us. Funny thing is, this is chipmunk #7 this week Yes, I said week. The first three were brought in dead, on three successive days. Well, at least they were dead when I found them in the morning. The fourth one was brought in 'live'. I came home from work and Anastasia met me at the door with a giant fishnet in her hand, "Mom, we have a visitor..."

So, after an hour of chasing this one about the house, I managed to corner him under a bookcase, and grasped him with two hands (screaming the whole time, mind you) and put him in a giant empty fishbowl, and slapped a book on top before he could scramble out again. Anastasia was delighted. "CAN WE KEEP HIM MOM???" The caps might give you some idea of the decibel level at which this was delivered at me. "No, honey. He needs to go outside. I'm sure he has a family."

I use the family line often, because it has, thus far, been the only thing that meets with her approval. If I say we can't keep him for any other reason, she finds a loophole. The idea of a little chipmunk family waiting for him is too much for her. She has to give in.

So, we take Lucky ( she has named him already) outside to the far edge of the woods near our house and let him go. This chipmunk should win an oscar; he stopped just outside said fishbowl, turned to look at us, and hopped up to a nearby rock, where he just sat there for a moment, considering us. I kid you not.

" MOM! HE'S SAYING THANK YOU!!!" (Same decibel level being used here. My ears hurt.) "Yes, honey, I think he is." And after a few moments, Lucky rushes off into a pile of autumn leaves, and is gone. Then I have to listen to four hours of " Mom, I think we made a mistake. We should have kept him." Later it's " Mom, I miss Lucky.." said with the mournful tone of a grieving widow. Finally, the next day, all is well. Then the next day comes , and I hear..

" MOM!!!!!!!!!!!" A screech emanates from the kitchen that is so desperate and bone-chilling it can only mean my daughter must be under attack by a bevy of spiders. Nope. Worse. There is a severed chipmunk head resting in the middle of the kitchen floor, with tiny bloody footprints leading away from it to the cellar. This was Chipmunk #5, may he rest in peace. A day of revenge ensued, with my daughter chasing the cat with a broom, calling her a murderer. "Honey, you cannot scare kitty like that. It's her instinct to go after the chipmunks. She can't help it." My daughter looks at me with disgust. "Mom, it's your fault. You baby her. She's not a baby. She is ten years old, and she could stop murdering if she really wanted to. You just don't punish her and now she thinks it's ok."

So, I played referee between my poor cat and my ruthless daughter for the day. The next morning there is a large dead chipmunk in the same location as the head of the previous day.

" I hate that kitty. She is going to hell..." My daughter announces as she hands me a roll of papertowels to clean up Chipmunk #6. " Honey, please do not use that word."

Fast forward two days. We have closed off all possible entries into the house so Kitty cannot turn the kitchen into yet another crime scene. We block the dog-door, we close the window she uses as her own personal entrance, and we keep her under close watch.

Well, not close enough.

At 7:30am Friday, we go together to let the dogs into the yard for their morning pee. In an instant, Puck is racing into the house with - you guessed it -- chipmunk #7. Bedlam ensues. Somehow my daughter manages to bat the chipmunk out of Kitty's mouth, and it runs around the house like nothing you've ever seen.

" MOM! He's in the bathroom! Wait! Now he's in the kitchen! He's in YOUR room! He's in the closet!" My daughter races room to room, with the two dogs in hot pursuit. Finally the poor thing races behind the fridge, and the race is over.

I just tossed a handful of sunflower seeds to him before I started this post. I can't bear the thought of the poor little thing starving. I know, I'm weird. We're going to do our best to catch him and release him tomorrow, but I honestly needed a break. I've been doing chipmunk rescue
for ten days, and I'm plain exhausted.

The Dreaded Question...(if you've adopted)

Ok. I was hit with one of the dreaded questions today. No need to panic. I was heavily armed. I had planned for this over the years, just after the first time I was asked a 'dreaded question'. I vowed then and there to be ready the next time. No need to flip out, I told myself. Just educate the person.

So here's how it went down. I won't give too many details about where, to protect the poor soul from retribution. I was 'out and about' shall we say, this afternoon, and met a new fellow parent. Nice enough woman, engaging in the expected chit-chat that happens in the location where we were. The topic came to kids, and I mentioned that I had adopted three years ago, and that my daughter was now 15.

"So, do you have any of your own kids?"

I let the question just hang there for a minute. I was hoping it was echoing in her head. I was hoping that, in the span of seconds I was using to retrieve all my ammunition she was wallowing in the blatant and, frankly, inexcuseable rudeness of her question.

"Umm, yes, that one I was just talking about? The adopted one? Well, she's kind of mine." I couldn't help the mild sarcasm. I was devastated. I wanted to educate her. I wanted to take her out for a long drive and explain to her how my daughter was as much mine as hers was hers. But I didn't. I kind of froze, and let the relative silence do the speaking. But afterwards? After she had driven away? Oh boy, then my mind was racing with facts and stories and wise quips. It was too late. She had driven away in her fancy BMW with her perfect child and her equally perfect, pure-bred dog in the back.

So, here I am in blogland telling her what I didn't get to say five hours ago. Honey, she is mine. She is more mine than you might ever feel for your own flesh and blood child. She

*Sorry everyone! blogger ate part of my blog last night and I'm trying to retrieve it!*

Writer's Block

I am having writer's block after only a few days of blogging. Go figure.

My dad was a writer. I remember how frustrating those times would be for him. But his never lasted for long. He was passionate about so many things, he could usually get himself writing about something after a few hours of stand-still. I sometimes tell myself, "Well, he didn't have all the distractions that I have." I mean, there's a cat sitting on my shoulder, for one thing. My dad never had a cat sitting on his shoulder. It makes it that much harder to hit the return key.

And then there are the two dogs staring at me with plaintive eyes, from under my desk. Walk? Walk??? I know that's what they're thinking. Our dog growing up wouldn't have dared hang out under my dad's desk. My Dad's office was his own private kingdom. No one ventured in unless invited, including the dog.

And then there is the internet. My Dad never had the internet lurking behind his manual typewriter, tempting him with all night scrabulous or google searches or ebay. I think that could've been his downfall had he grown up in the digital age.

And I've got my daughter's constant commentary wafting in from the next room. She's playing Animal Crossing on Game Cube, and I am the fortunate receiver of every bit of information on her character's comings and goings. Mom, I just caught a cricket! Hey, mom, I planted twenty peach trees just now! Mom, my character just paid off her whole mortgage and got a golden statue for it! Grrrrr. What I wouldn't give for a paid off mortgage in the space of a week, nevermind the golden statue. The house I grew up in was big enough that my Dad could write in relative quiet even if all six of us were home. I'm in a little fifties era bungalow, and a rented one at that. The walls are paper-thin, and all the rooms feed into one another. No hiding anything here.

So you see, there are reasons I cannot write. Good reasons. I mean, the garbage still has to go out tonight, and I'm three or four loads of laundry behind, and there are those twenty odd phone calls that need replying to - well, at least the three from the oil company do. And, um, wait - if you give me a few minutes I know I can find a few other choice reasons.

Well, look at that. I got a paragraph or two down without breaking a sweat. That's impressive.
But wouldn't you know, it's bedtime. School night, so I've got no choice. Plus, the dishwasher needs emptying and re-filling so I can run it while I'm asleep, and there are those bags of groceries I never finished putting away two days ago, and the there's a spider building a nice little home in the shower, and I left the hedge-trimmer outside and it's supposed to rain, and...and....

Lovesongs and Bedtime Rituals

I just finished our nightly two hour bedtime routine. I realized while I was lying there that I have never really shared this nightly ritual with anyone. In some ways it feels that sacred to me - as if speaking about it took some of the magic away. But, lying there, tracing my fingers across my daughter's little feet until they were numb (my fingers, that is), I thought about how much I wish all moms and daughters had this time together every night - what a difference it would make for all our waking hours.

Each night, after teeth brushing and face washing and dog hugging, my daughter comes to me and says something like 'Mama, come cuddle me.' Sometimes it's just 'cuddle time' and other nights I hear only 'Come...' as she grabs my hand and leads me into her room. It makes no difference that later I will be sleeping in the bed next to hers. She needs me now, to help to through this transition into sleep.

We turn on the music, and I lay toe-to-head with her so I can reach her feet. She cuddles up into her covers and quilts and starts rocking softly, but always remembering to stick her feet out to nuzzle next to my side.

I start running my fingers along the bottom of her feet and, later, her legs. She has a repertoire of movements that are meant to signal me if I am going too slow, too lightly, or am simply being too sloppy about it. Shaking her foot up and down means I'm doing it too light, hitting me gently with a foot means speed it up, and both feet rapidly drumming the bed means 'too sloppy, mom, wake up!' And while this ritual goes on, there is the music.

It is the same music every night, in the same order. It is our music. It tells the story of our life together and our friends and family, and God forbid if I ever change it or add a new song. I won't burden you with the whole playlist, but for a taste...

We start with Lullaby by Billy Joel. A piece he wrote for own his daughter. It speaks so beautifully about that sacred time shared before bedtime. Then it's Bless the Broken Road, that tells the story of our journey to find one another. Then it is our song, the one that was playing on my CD player as I rounded the corner to the orphanage to go and take her home: The Luckiest, by Ben Folds. Three years home with her, and I still cry each time I hear this song. The tears may be fewer now, but there nonetheless. It has become our prayer to one another, our exclamation of gratitude.

Then come five or six more such songs that speak of my love for her, and then it moves into our 'family' songs. There is If I loved You and Always sung by Frank Sinatra - two songs that we pretend my Dad (her grandfather) is singing to us from Heaven. Then there is Somewhere Out There by James Ingram, that we sing to her sister, far away in Russia. Finally, there is Everything to Me by Mark Schultz, which is for her birthmom. She doesn't like me to sing that one with her. It's hers alone - a moment each night to connect with the woman who gave birth to her. Of course I cry my way through that one often enough, too.

Later, the songs become mostly instrumental -- Enya, Loreena McKinnett, old and haunting Celtic tunes. The ritual bittersweetly ends with my favorite classical piece, Clair de Lune, by Debussy. By this time she is usually asleep, and I am left awash in this pool of deep gratitude, in the dark, with her feet in my hands.

The day behind us could have been fraught with tantrums, tears, frustrations, and even full-blown ragings, but at night...it all gets laid aside. The lights go off, the feet come out, and the music speaks to us of this incredible journey we have travelled. All seems right with the world.

Goodnight:)

The Spring Standards

I guess I'm on a roll. A laziness roll, that is. Well, I can rationalize that blogging is not a lazy endeavor, right? So, although I find myself hiding at home in my pjs again, hanging out with my daughter, even watching some mindless television...if I blog about it, it becomes something of value in a way.

Last night I had a rare night out. Rare because if you are mom to a child with RAD and PTSD you can never count on seeing through any plans you make. It is a minute by minute negotiating of life. I know many RAD moms know exactly what I mean. Well, last night a miracle occurred. I was invited to go and see some new friends of mine perform at Club939 in Boston, and, lo and behold, my daughter was ok with my going. In three years of being her mom, this has happened, well, never. My daughter is almost sixteen, but in many ways is far younger than that (which is fine with me!) but it does make grown-up time almost non-existent. Anyway, the Spring Standards were performing, and all my favorite people were going, and I made the effort despite exhaustion, and mild "going into the city" anxiety.

I drove my young friend Zoe in, and we took the T part of the way. There was an opening performer, Liz Longley who had the voice of a been-around-the-block angel. I even bought her CD. And then Heather and James and James took the stage, and it was like a visit to a better, brighter world. I don't even really know how to define their music. If I had to, I'd say combine folk, blue-grass, a pinch of pop, a dash of alternative, some Ben Fold-ish lyrics, Ween-like melodies, Peter,Paul & Mary harmonies..and you might have an idea of what they create. I was entranced. They were on Conan O'Brien recently. Good. More of the world needs to hear them. Truly.

So, today I am just revelling in the joy of last night's escape. And being a bit too lazy.

Lazy Saturdays

My to do list is well over a mile long, and I'm not getting any younger, but something happens on Saturdays that makes me forget both of those facts. I give in to the sleep gods and later to the nap gods, and not much happens in between.

As hard as I try, I just can't seem to make Saturdays a productive day. Now it's not that I don't want to. I dream of early-risen Saturdays with a sunrise walk of the dogs, a pre-opening trip to the local farmer's market, a quick dash to the bank to make deposits, a stop for coffee, a glamorous trip to the dump to unload all of my recyclables, maybe a stop at the carwash and jiffylube to get my car up to par. But where am I right now at 2:40pm? In my pajamas, eating stale coffee-cake, sitting in front of the computer after a magnificent nap.

When I'm feeling guilty, I remind myself that sleep apnea is likely to blame, or maybe the crazy week of little sleep, or the insomnia. But none of those rationalizations serve to relieve the guilt. I guess I'll just remain in a kind of limbo between activity and do-nothingness until I get a handle on the psychosis behind the action.

Right now Henry is lying at my feet, his paws splayed to the side, and his nose resting on the cold floor. Matilda is resting on her pink dog pillow. I hear my neighbor sawing wood in his driveway with some god-awful electric saw that sounds like some painfully old woman is dying a slow death. I'm trying to ignore it, but it just keeps getting louder. My desk is cluttered with papers, catalogs, clorox wipes, checkbooks, an empty oatmeal bowl, my wallet, glasses, crumbs from various snacks, a dirty paper plate, a calendar from the middle school, an old minolta camera lens, unused birthday cards, a stapler, two plugs, and three empty medication bottles. What gives? How did this mess manifest? And when?

Ok, time to hit the shower...

You Can Do It, You Can Do It...

OK, I'm going to do this. I'm going to start blogging again. Really. Truly. I think.

Anyway, I rediscovered this, my old blog, when I googled my grandmother's name. I had forgotten all about it (this blog, not my grandmother's name..) It was a happy little surprise to find it, and read what I had forgotten about, and see photos I lost track of. Anyway, I'm going to try to just free-write. Not think about it, just write. Because, well, that's how I used to journal, and I filled up twenty years worth of journals that way, and it served me well. Plus, I am a perfectionist when it comes to writing, so it will be a good, zen-like discipline for me to get in the habit of writing without editor-me hanging over my shoulder. Besides, I think it will also be the best way for me to get at the real me. No censorship, no re-do. Just me, as is.

So, to catch up, I'm still a mom and loving it despite the challenges of raising a child with RAD and PTSD (Reactive Attachment Disorder and Post Traumatic Stress Disorder for clarification...) My sweetheart has started therapy finally and is doing remarkably well with it, considering her aversion to:

#1 meeting strangers

#2 conversing with strangers

#3 talking about her past, and

#4 sitting still for more than 15 minutes.

She has also started school again, part-time, and that has been a slow win. She is repeating 8th grade, and my hope is she will make it there every day, though that is an unreal expectation.

It's so hard to try to do what's best for her without the support of my family and certain friends. If they could only spend a day in her shoes. I hate the fact that some people think she is lazy for not going to school. Even my mom has misgivings about it, as hard as she might try to hide them from me. Thank God for the therapist and psychiatrist, and school social worker. They all see what she's up against and offer great support and insight. I need to learn to disregard the disssenting voices and still always do what is best for my daughter. There is nothing I can do or say that will help these other people understand. God knows my sweetheart daughter has learned far more in her year of homeschooling than she would have had I tried to get her in the school door each day. At least now she is going part time at her request. She wants it to work. She wants to fit in. God bless those who understand, or even try to understand what a mountain she has to climb every day.