Crap

She's at it again.

I'm heaving the sigh of a leaden hearted mother. Again.

I thought we were FINALLY past the eating the hair stuff. But, after a year plus hiatus, she's back to chowing down on it.

How utterly revolting. We'd finally decided that she could grow out her hair 'long and pretty' the way she wanted to (just like a princess), and things had been going so swell, until tonight. Yup.

I'd caught her every so often with her hair in her mouth, but only for seconds at a time. In fact, when she thought I wasn't aware of her actions, many times I saw her hair fall toward her mouth and watched her impatiently brush it away; out of her mouth.

Not so anymore. Whether she's eating her own hair, or off of the floor again remains to be identified. What has been certified is that she had hair in her fecal matter.

Eeew, gross.

And, the saddest part of it all? As I flushed the toilet, perplexed at the revolting pica rearing its putrid head again, it dawned on me to save said offense, to submit to the laboratory and finally, finally get her the 1:1 aide at school she so desperately needs. And, that 1/1,000 of a second my synapses fired too slow, away went the evidence that would grant her access to what she needs on her IEP.

Crap.

Apparently, my life still revolves around it.

5 years old...

Dear Peanut,

I can hardly believe it, you're 5 years old today. Five, as of 2:53pm.

We've already had quite a few adventures. I've learned so much from you, about you, and even more about me. I had no idea all those years ago just how drastically my life would change. The cliche is that once you have a baby 'normal' ceases to be. It is also said that it takes about a year to 'recover' from having a baby. Well, baby, I'm still recovering, and I know that my life will certainly never be the same.

On that glorious April day so long ago, you were forced into this big old world earlier than any of us imagined, nearly a month premature. The doctors watched my pregnancy with you as carefully as any other mommy-to-be's. Everything went just about as you would expect. I felt sick and miserable the first few months after you made your presence known. Then, life started to 'normalize' again, and I felt better. In fact, we were cruising along at quite a good clip. I got a new job, and your daddy and I moved to a strange new city, all alone, and looking forward to the adventure that was to be you.

Then, about 7 months into my pregnancy, the doctors spotted some abnormalities: you weren't growing. You were so tiny. I had to go on bed rest, and the doctor considered putting me into the hospital to rest, in order to keep you safe. It turned out you had a condition called 'intra-uterine growth restriction (retardation)'. It meant that for reasons unknown you just stopped growing the way you should. Because of this, the doctors decided that you could 'cook' inside of me no more: it was time for your eviction. Should you stay inside of me any longer, the chances of you surviving got smaller and smaller, and we'd hoped and prayed for you and wanted you so badly, that just couldn't be. So, your introduction to the world was scheduled: you would be born on April 28, 2003.

And so you were.

I labored to give birth to you for exactly 5 hours and 23 minutes. I pushed for a total of 10 minutes, and two pushes until you came out. You see, the doctor was worried about your little heart and all the stress that being born would put on you, so she told me that we were going to have to have you via cesarean delivery. I would have done anything to protect you, and the doctor knew it. I think she saw the silent tears slide down my cheeks, she saw I was so worried and scared for you, that she said to me, "you're going to have this baby right now. Now push!" And so I did, and so you were born.

You were such a tiny little thing! Only 5 pounds 12 ounces, but so long--19.5". You breathed right away and I heard your tiny little mewling cries, and I knew we'd be OK.

Your first days in this world were tough: You wouldn't eat, and you had jaundice so badly you were as yellow as a squash. You had to sleep under bilirubin lights (like a tanning bed!) to help your little body break down the excess iron in your system, and we had to measure what you ate in cc's (that was to be the way of it for the next few months, you so disliked eating!).

Your daddy and I drove you home, all by ourselves, and walked into our tiny little home thinking to ourselves, "oh my. What do we do now?" Life was pretty hard. We were all alone in a new city with nobody to help us and nobody to call to ask advice. Our introduction to being your new parents was a real trial by fire. It is by the grace of God alone that we made it.

Both your daddy and I were out of work by the time you were 2 months old, and so your daddy went to school to learn to drive commercial trucks. Soon, he was done with school, and headed out on his new career. It was hard for us, because your daddy was gone for as much as a month at a time, and it was just you and I; no family and few friends. It is a wonder to me, as I look back, how we ever made it at all. I suppose it was due to how stubborn you and your mommy are.

Time has gone at such an erratic pace over these years. We struggled with you every day. Your little body was so weak, and you were so tired all the time, you didn't make your 'milestones' when you should. I took you to a big city, an hour's drive away, to the physical therapist's office, to help you learn to roll over, sit, crawl, and eventually at 17 months of age, to walk. It was a long and emotional journey.

As a baby, you hardly made a sound, and you didn't much care to be held. I always thought it was because I did something wrong, or that you were rejecting me on some level. It left me with many 'hard' feelings. But, we learned why you acted this way much later on.

You didn't talk when you were 'supposed' to talk, so we took you to doctors and specialists to try and help you out. You didn't talk until you were about 3.5 years old! And, when you did talk it was only your mommy who could understand you.

It turned out the reason why you didn't talk, and why you didn't like to snuggle was because of a disorder you have. It is called PDD, and it is on the Autism Spectrum. Your doctors said because of this, you learned from the world in a different way, and you would interact in a different way. It doesn't mean your way is wrong or better than my way, it is what it is: just different. We work each and every day to make your world more understandable to you, and to understand you better, ourselves. It is a journey of a thousand steps, and we're only 5 steps into it.

We've come so far, together, you and I. Despite all your challenges, from birth-on, you've come through far better than anyone could have predicted. You laugh, and smile. You sing and dance. You love to go to gymnastics and swing on the bars, and bounce around in the 'cheese pit'. You're learning how to swim! (and to think, you used to scream and cry if any water so much as touched your head) Just last week, I watched you do 40 'dunks' under water, with nary a tear! You have your bad days (and boy are they bad) but, the older you get, the more your days seem to be good, really, really, good.

You are an amazing little girl, and you amaze me each and every day. Just when I feel like your challenges are insurmountable, you do some sort of little, ordinary, every-day miracle, and in that instant the sun begins to shine, and all the little challenges and struggles we face, melt away for that glorious little instant.

Happy birthday, my precious little miracle. You are my bestest girl; always.

Love,

Mama

Friday, bloody, Friday (or the day from Hell)

Where do I even begin? Well, for starters, if you've got a squeamish stomach, skip this one; if you're not into listening to drama, skip this one; if you're just not willing to listen to me whine and rant and rave, just skip this one and check back another day, like on one of the days where I post goofy pictures (like the peeps) or photos of slumbering, fuzzy kittens in the sun.

Warning: Today was a bad day.

Things were going 'swimmingly' up until about 11am. That's when my dear friend, who was watching the kidlets, calls me at work to let me know there's been an 'incident' with Peanut, but that she was ok. Whenever someone says there's been _______ "but such-and-such is OK" you know it is bad. What they're really hoping is that they can be responsible and let you know what happened, all the while silently praying 'Oh dear God, please don't let them freak out. Please don't let them freak out'. You know that prayer. The one you say when you're certain all of it (and then some) is going to 'hit the fan.' Yup. That one.

Well, after the phone call, it is pointless to say, I immediately left work, and headed out to get the Peanut and do damage control. En route I phoned the pediatrician's office, silently thanking God for the invention of cell phones and the affluence of my family to be able to afford one. The receptionist clicks onto the line: "Dr. K's office. Can you hold for a moment?" Uh, lemme think about this for a nanosecond: 'No, not really." And then I explained my situation. Thank goodness the receptionist was having a good day or had taken her happy pills or taken a huge hit of meth or whatever--she was so pleasant, and was willing and able to put up with my mild hysteria.

By the time I finished talking with the pediatrician's office I arrive at my friend's house: there's peanut, sitting on the couch with my friend's sweet husband, ice pack on her little head. She doesn't look any worse for the wear, but the truth is: My little monkey had been jumping on the bed (no, really) and she fell off and hit her head (we think it was on the foot board of the bed), mama (me) had already called the doctor and the doctor said: "tell me just exactly what she did to her head!". Poor little peanut had managed to get quite a gash on the back of the crown of her head, about one inch in length and I'm guessing 1/2 a centimeter (???) in depth--deep at any rate. It had mostly stopped bleeding by the time I got there, and amazingly enough she wasn't in any pain and wasn't complaining.

Whew!

My poor dear friend, on the other hand, was a wreck. She was so upset, and worried over Peanut getting hurt, and worried about how I'd react (normal reaction, I'd be the same way). I felt so bad for her because she was so upset she was in tears, and even though I wasn't (and still am not) mad at her, nor do I find she did anything wrong, I couldn't reassure her that I understood, and that it was just a freak kid accident--it could have just as easily happened at my home as at hers, or with any other kid. I do hope that she feels better tomorrow.

At any rate, I decided yes, Peanut did need stitches, so off my friend, my Peanut, and I went to: The Emergency Room. (duh, duh, duh). There we sat. And sat. And we sat some more. We sat, with a bleeding four-year-old child in the waiting room for the upwards of almost 2 hours before they took us back.

I guess the old saying is true: you could, technically, bleed to death while waiting to be called back into the emergency room. Huh. Who knew?

After a short visit with the E.R. doctor and a nurse, they decided we needed to suture up her head, as my friend and I figured, and that they were going to use staples.

What?

We went to the E.R. for the purpose of letting my girl be sedated a bit for her stitches because we didn't think she'd be able to handle it 'the old fashioned way' (given that on the 7th of this month it took 3 adults to restrain her for a single blood draw--that is a story unto itself). Well, the sage doctor decided we'd try the staples first, and if that didn't' work, then we'd do sedation. At this point in time I was like "whatever will work. Let's just get this over and done with." All the while, Peanut has been an excellent patient--no whining, crying, or acting up (that was her mother who was doing that!!).

So, there we were, in the E.R., Peanut on my lap, my legs wrapped about her waist, holding her in a 'bear hug' while the gentleman nurse (a fantastic human being, I might add) held her head steady and the doctor stapled her scalp shut.

Ca-chunk, ca-chunk, ca-chunk, ca-chunk, and one final ca-chunk.

And it was done. Nearly 3 1/2 hours after we arrived, and $100 lighter in the wallet later, the girl was sutured up and we were on our way.

And to think, we could have had the same results, at the Pediatrician's office, and been in and out in less than 30 minutes. GARG!

Then, back home again. Peanut was feeling frisky and fine (the child was doing somersaults on the couch (getting blood everywhere-eew!) and had to be told to calm down and relax, so her sutures wouldn't be disturbed), and mommy's blood pressure was through the roof. Not the way I'd wanted to spend the afternoon.

At least my little girl was 'good as new' and feeling fine. That was the most important thing.

After both children were fed, and the boy put to bed, I headed out to run the last of the birthday errands I had left. Originally, I'd planned to do all of the errands and 'to-dos' this afternoon, but the trip to the E.R. disrupted that train of thinking, so it had to wait until after dinner.

I wound up taking care of all of my errands, with a little insult added at the gas pumps ($20 for 5.45gal. of gasoline! ***#$@@@$*$*$* insert expletive), only to walk back into the house, ready to frost the cupcakes for Peanut's party tomorrow, to discover my darling husband had only bought one can of chocolate frosting--to decorate 54 cupcakes in 'rainbow' colors. So much for being prepared the day before the party.

Needless to say, my evening ended on a truly aggravating note. But, the silver lining to this cloud is that the Peanut is OK, she's feeling good, she's going to be five, and has five staples in her head, someday this is going to make a great story to retell; and, hopefully my little monkey has learned her lesson: 'no more monkey jumping on the bed!'

Patsy Cline said it best: "Crazy"

Here I am, 2:31pm, home and already had my second cup 'o java for the afternoon (I had 2 this morning before leaving for work, and I cheated and had a small (6oz.) cup of BLACK coffee at work...). Apparently I'm working my addiction up to a full pot of coffee a day. And, to think, I'd been doing so well at only having one measly little cup (black!) in the morning before going to work. I've tried to quit coffee, go it the 'tea' way...but let's call a spade a spade: living among roosters as I do, working, having the PEANUT (note: the caps is on purpose)...facing the day without waking up to the smell of syrupy thick espresso strength coffee, to be guzzled by the 12 oz. mug, is like asking me if I'd like a visit from Jack Kevorkian (life without coffee? yes, pencil him in at 3...). So much for the reduction of caffeine. On to bigger things:

I love my Peanut. Peanutzilla; the Chubber calls her "peanut-butter", B.J. often calls her a pain in the _________ (fill in the blank: neck, butt, etc...). I do. I love her so much, I often go into the 'red' caring for her and all of her various needs. I do without, so does B.J. and the Chubb, though the latter doesn't yet realize it. Ask me how long it has been since I had a whole-hog, pull-out-the-stops-vacation. I'll tell you: I don't rightly remember. Far. Too. Long. Ago. After all, I'm the girl who buys (bought) airline tickets to Europe or Hawaii on a spur-of-the-moment 'this price is too good not to buy it' whim. Sigh. Those days are looonnng gone. I'd like to be able to go to the salon every 6 weeks and get my highlights done without my mental abacus going into guilt and worry about bills overdrive, and so I don't look like the bus driver from South Park; I'd like to be able to go shopping once in a while without feeling like I'm going over the precipice and landing us into debt. I'd like to stay in the black, but it just seems like it isn't gonna happen.

Already, this month alone, we're up to about $200 in medical co-pays for Peanut, and it isn't even the end of the month yet. Not to mention, the $2,000 invoice from OHSU that we received the other day that we may be 100% responsible for (maybe the insurance will pay it, maybe it won't. I think that BCBS uses a 'magic 8-ball' to decide on what it pays out on.).

Back to the Peanut, and, more specifically our current situation: Her psychiatrist has recommended we take her to a psychologist (main difference: the former is an M.D., the latter is a Ph.D.) for 'neuropsychological evaluation....[to] rule out other neuropsych dysfunction; to include IQ/LD'. Blah, bluh, bla? Yes. I know, it is partly Greek to me, as well. Basically, we want to find out a baseline for Peanut's cognitive performance. The psychiatrist doesn't do that kind of testing, the psychologist does. So, off I go with referral in hand.

Cha-ching.

The referral we've got in our hot little hands is for an out of network provider. Translation: mucho dinero. I, of course, don't have to have this testing done, but being the compulsive problem-solving mama that I am, I am going to. Because, after all, if this sheds more light on Peanut and how to deal with her 'quirks' I'm all for it. But! It all comes at a price.

The evaluation Peanut needs will run the gamut of $1,200-$2,000, quote that the psychologist gave me over the phone.

Choke-to-death. [insert gagging and vomiting noises here]

The insurance will pay up to 70% of what they deem 'usual and customary fees' (after I've paid my $300 deductible). In normal human being speech that means they will decide what a doctor should charge, and based on what the insurance deems to be the 'appropriate' charge, they will pay up to 70%. So, if they say this type of testing should cost, for simplicity, $10, then 70% of 'usual and customary' would mean they pay $7, leaving me to pay 30% of the balance, or $3. Sounds relatively simple, but when you're dealing with multiple zeroes after the numbers it gets a bit more...hmm...how shall I say it...distressing. Furthermore, if Peanut's psychologist doesn't charge $10 for the testing, but charges $17 for the testing, the insurance still only ponies-up $7, and I'm left with the balance of $10. So, basically I'm a bit on the screwed side.

What is a parent to do? What I always do: try to do the best I can by my peanut. I continue to mumble and grumble over medical costs--but I'm lucky: I at least have insurance. Some folks aren't so lucky, and once upon a time in the recent past I was one of those folks who didn't have insurance...and by God, did I pray I didn't get sick.

I continue to be more and more political; I follow the insurance legislation for my state. I send letters to my representatives and legislators. I've been scheduled to testify in front of the legislature before (though the meeting was cancelled). All in the name of providing my daughter with the necessary medical care she needs to live the fullest and most productive life she can live. So that my husband and I can have some semblance of normalcy in our family: we know and remember all to well what life was like before Peanut had the appropriate therapies and help; life with an untreated child like my girl is sheer hell.

So, the song that plays in my mind's Mp3 player, today, would have to be Patsy Cline's "Crazy," because I'm crazy in love with my girl.

...haven't dropped off the face of the planet (yet!)

Its been a long time since I've posted. A lot has been going on. I don't even know where to start. I guess, I can briefly mention that Peanut had a homicidal moment (not said tongue-in-cheek), and, understandably, I had a near nevous breakdown as a result of it. Safe to say, life is slightly closer to 1 standard deviation away from the mean (i.e. 'normal'), thanks to an emergency visit to her psychiatrist.

It is fast approaching the 6th anniversary of my mom's death, so I'm a bit melancholy, and have been mentally working on a post for the past month--though, haven't committed it to paper-yet.


My goal this week is to get some of my thoughts sorted out and on 'paper' out into the blogosphere for your consideration.

As for now, we're surviving. Day to day.

The Donut's Best Friend (no more)

Today, was a good day--of sorts.

To start out with, B.J. and I have been having some misunderstandings as to what creates a good marriage, a sound relationship, and what mutual respect looks, sounds, and behaves like. We were having one of our (rare) spats. I was trying to communicate with him (explicitly--since we all know expecting him to know implicitly is a pipe dream--really, for all men) what it is, exactly, that I need as a female to feel loved and appreciated. I really am not asking (in my opinion) for much: I need to hear 'I love you' more than just at bedtime before we both fall into unconsciousness, I need him to make some decisions on his own, as a man, without me telling him what to do (imagine that!), and I need him to be a partner in raising our children--as in every weekend day if I'm otherwise engaged between 9:30-10:00 am they need a snack and instead of telling them everything they can't do, please, please, please, take my one piece of parenting advice (to save us all some sanity): re-di-rect!!! I really don't think that is too awful much to ask for. Truly. I'm not asking for a Ferrari, or diamonds (though, I likely wouldn't object to them too much), or a bouquet of roses every night after I clean the house (hmm...again, wouldn't protest if it were to happen). I just want simple respect.

Anyhow, our 'discussion' of the aforementioned issues spilled into this morning. Yuck. I was so annoyed and agitated I just couldn't think. I couldn't say anything nice (and shutting up was excruciatingly painful) so I decided to listen to that little 'nudge' that the Spirit gives me every so often: It told me to leave the house and go for a walk. A walk? You mean exercise? Fresh air? Movement? GASP! Well, I did. I wound up lacing up my sneakers and stuffing my head into a winter cap to go for a walk. As I went about my preparations I went to grab my iPod for entertainment: dead. So, I thought I'd call my neighbor who I often talk with about personal issues and who, like myself, is trying to get into shape: still asleep. So, I stomped out my front door expecting to wilt of boredom on my walk. My walk was anything but boring.

For about the first 1/2 mile of my walk (uphill!!!) I grumbled and griped and complained in my head about what was vexing me. My mood was not improving. Then something happened: I remembered that I could take this time of quiet and solitude to talk with my Creator. And talk I did. I talked to the Boss for nearly a whole hour.

It was wonderful. I poured out my heart and my soul, begging forgiveness for my shortcoming and weaknesses as a mother, wife, friend, and human being. I let out my fears and anxieties. I prayed for B.J. and for myself. It was such a conversation, I nearly didn't want it to end.

By the time I returned to my front doorstep, my mood was improved, I felt a lot better (mostly from my time with my Maker, but also from a vigorous mostly-going-uphill walk in the South Hills), and I was ready to face the day.

With my amended attitude (though still somewhat annoyed--see 'what I need to be loved' regarding Snack) we left for church. We decided to try out a new feature of church: CORE. It was designed with married couples with small children in mind, to meet their spiritual and emotional needs at the point of time in life they are. It is a group of about 40 or so people. Often, I have issues going into established groups like this. I feel all sweaty and nervous and turn into a wallflower (I know, hard to believe, but true). I feel intimidated and I get a case of 7th grade ego: where I think they're all judging me, talking about me in a negative way, and generally finding me not member material. It is silly, but its true.

To my great pleasure they were very welcoming, friendly, and they approached us. They made us to feel a part of the group immediately. I would reckon that about 5 separate couples came up to us and introduced themselves, welcomed us, and inquired about who we are and our children. It was amazing. Truly. In my experience with churches in this town, we have not had a very warm or even friendly reception when we've visited or tried anything out. This was just what I think we needed. One of the topics that they address is marriage building. Visiting this group couldn't have come at a better time. It was also an answer to a small but honest prayer uttered this morning on my walk. Thank you, Lord, for small miracles, and for nudges in the right direction.

I have many lines from movies that are among my favorites; one of my favorite lines comes from the Sandra Bullock film HOPE FLOATS, it is one character addressing another about a formerly chunky high school classmate (who had gotten thin in the interim years):

...Oh, you know Dot: the donut's 'best friend.'

Normally, at gatherings like the one at church today that describes me: The donut's best friend. I always find a way to meander over to the donut and coffee table and find a sugary carb-cake to keep me company (or my mouth full, and unable to talk) when I'm nervous. Today, I went with B.J. over to the donut table where he loaded up a dessert plate full of cookies, brownie, and donut, whereas I, even after being offered said new and improved lifestyle offending consumables, politely declined. Yup. Another small answer to prayer: staying with my decision and not cheating or short-changing myself. I was not the donut's best friend. Amen!

As I've said before, thank God for small victories: I've added another to my list.

B.J. and I will be OK. We're fighters; we don't give up. And, despite all that has gone on this weekend, I'm OK, too.

I'm living with roosters!

I'm going utterly crackers, here. (As if it were something unusual-ha!)

My evil little children insist on being up at the pre-crack-of-dawn. I've said it many, many times before: Mommy don't do kids before 6:00 am.

I. Just. Don't.

There's just something very sick and wrong about children being awake and up (playing loudly) before 6:00am. I can't and don't want to handle it.

BUT!

My children have consistently been up and awake at 5:00am, 5:20am every. single. morning. I don't know what to do about it. I've tried to put them to bed later (10, 15, 30, 60 minutes (and more) past their bedtimes): still up in the 5:00am hour. I've tried to run them around and wear them out more in the afternoons: still up. I'm at my wits' end with what to do.

I am up early, early in the mornings. Part of my early waking is insomnia (ironically I could easily go back to sleep about 6:30am...too bad for me, that doesn't work), the other part is that from 5:30-about (ideally) 6:00am that is my private do-whatever-quiet-activity-I-want-to time. Just one problem: evil little monkeys who refuse to a) sleep until a reasonable hour, or, b) the same evil little monkeys who refuse to sleep until a reasonable hour also refuse to stay and play in their rooms.

So, dear reader, this is where you come in: I need your help! Desperately!

I'm looking for ideas of how to get my kids to sleep until at least until 6:00am or how to get them to play quietly in their rooms until 6:00am. Let's face it folks: I'm not picky. In my perfect world my kids would sleep until 6:30am weekdays and 8:00am weekends. But, at this point I'd settle for staying in their rooms until 6:00am.

Please, please write in. Help me find the 'magic bullet'. I'm open to just about anything--as long as it works.

I'm counting on you, dear friend, help me out!

Tear Drops in the Pool

I'm sitting here practicing my 'deep breathing' and trying not to absolutely fall apart.

One deep breath in through the nose, and slowly out of the mouth. And, again.

I am having this complete flood of negative emotions right now: sadness, anger, grief, frustration, annoyance, all gently folded in with some helplessness for good measure.

B.J. is sick with 'sinus' issues (whatever those happen to be), Chubber has a snotty nose that is perpetually dripping greenish goop, and he insists of flailing wildly while shaking his head back and forth yelling 'NO!' every time I attempt to wipe it. That combination, two 'sick' males in one household, is a powerful 1-2 punch that knocks me on my butt every time. Males, in my experience, don't do well with being 'sick.'

At any rate, tonight, B.J. had to go to the doctor, and he 'generously' took the Chub with him-- since mommy & me swim lessons were out of the question and Peanut still had her lesson to go to tonight (no way I could possibly take a 2 year old to the pool without expecting a MAJOR melt-down when he found out sister could swim but he couldn't...). That left the Peanut and myself to go to the pool for her swim lesson.

Normally, swim lessons are pretty even-keel and Peanut looks as normal as any other little girl. She splashes, slides along the edge of the pool, and obligingly kicks her legs in the water to play the splashing games that they do in her class. She looks, in a single word, typical. I cherish the moments in time where she is, for all intents and purposes, normal. Normal isn't, well, normal here. We have our share of Autistic moments, but that is 'normal' when your child is on The Spectrum. So, when swimming lessons come around, it is, for me, a joy to see my girl because I am able to catch a single little glimpse of who she really is on the inside: a beautiful, energetic, four-year-old girl. I see her as the daughter I always dreamed she would be. But, tonight wasn't to be one of those sparkling, glorious glimpses into 'typical.'

Tonight, in a nutshell was awful. Peanut was sullen, grumpy, and uncooperative. She was showing, in all its glaring, astrobright loudness her place on the Autism Spectrum. At first she wouldn't even get into the pool. After a time, and some talking, she agreed to sit on the steps and her teacher attempted to entice her further into the pool with a beautiful purple ball. It worked--temporarily. From there, the Peanut proceeded to rock back-and-forth in the water, while sitting on the steps. She receded into her own little universe further than I've seen her disappear into it in a long time (perhaps even a year or more). She shrieked and barked, dementedly in the horrible ear-drum piercingly high tone she so favors. She climbed out of the pool, and crawled around on the deck.

I tried to talk with her and tell her she could go home if she wanted to. She wouldn't have any of it. She was lost in her own oblivion. She refused to join her class, but also refused to leave. All I could do was humor her and hope that she would journey back toward earth. She eventually got into the water and started to participate in class. It was short lived. Soon after, she was back on the swim deck and began the howl and bark again while rocking back and forth, flapping her arms against her head. I have not seen her stim (self-stimulate) this badly--ever.

As I watched my daughter in horror, unable to help her to 'come down' or to come back-- I realized I could only support her in the way she needed, and that was sit patiently by as she danced through her own universe in a ballet that I did not recognize. As she was doing this I felt the mortar in the wall of bricks around my heart slowly begin to disintegrate and the walls of self-denial, or protection, or whatever you want to call them--my self-protection mechanism--came crashing down, one painful brick at a time.





It was all I could do to 'hold it together' while I watched my girl. I wanted to weep, and rage, and disappear all at once. I felt so terrible for her. She was disturbed in some way that she could not communicate to me, and I was utterly helpless.

I wanted to cry for her, but more than that I wanted to cry for me. I feel and felt so alone. I'm back to being adrift on that desolate ice floe in the middle of nowhere. Surrounded by the void that I cannot cross. I think I manage to deny my disappointment (at not having a typical child) for a long period of time, so long that I can almost forget it exists. Then, there's an event like tonight. My girl stumbles backward, and continues stumbling, until she's undeniably NOT normal. Then all the bricks around my heart, my self defense, crumble, and the vulnerable, bleeding, soft pink parts of my soul become exposed, again, and I am reduced to tears.

As another blogger put it "it isn't PC to feel this way [that you wish your child was normal], but I do." And, I do. Some days I just wish she were normal. I wish I didn't feel such shame and guilt that I don't celebrate and rejoice in having a 'special needs child', but I don't. If I could do something, anything, to make it so that she was typical I would. I imagine any parent, even those who love the fact that their child is 'special', would wave that magic wand if it appeared in front of them.

I love my little girl as much as I love life itself. I can't imagine my life without her--I wouldn't have the same life without her, nor would I want a life without her--I just wish in moments like these things could be easier. That the pink parts weren't always so raw when they get exposed. That I didn't have to find the mortar to glue everything back into place.

...She did what?

From down the hallway I hear my loving husband, the father of my children call out:
"She crapped a banana."

"She did what?" I question, with a note of horror in my voice.

"You heard me. She crapped a big banana."

I go into the bathroom to see what the heck he is talking about. I peer into the white porcelain throne that my daughter is perched on; my little girl beams up at me with her dazzling white smile and says, "Look mama, I pooped a banana!" Indeed, there is a plantain shaped bolus of fecal matter floating just below the water's surface.

I am utterly mortified at this point, yet at the same time trying not to start laughing hysterically.

Yes. This is the actual conversation that took place this evening as B.J. and I got ready to put The Peanut to bed. And, no, this is not a totally out-of-the-ordinary getting-ready-for-bed conversation. I wish it weren't, but it is.

A brief history of poop:

The Peanut was born almost a full month early, tiny, angry, squalling, and completely against eating-anything. As a result, she was jaundiced, chronically dehydrated, and lost a lot of weight (which is saying something, as she was only 5lbs. 12oz. at birth). She hated eating, it was an hourly battle, we measured what she ate in CC's (until she was a few months old). It is a fact: When you don't eat, you don't poop. End of story.

Continue on to the recent past: She still hates eating. The child exists on air, I swear (why is it that I can't quit shoveling food into my face, and I can't get her to put anything in her mouth? God definitely has a good sense of humor, or irony, if nothing else).

As a result of her hatred of food, she eats a fairly limited diet--mainly white, starchy foods, cheese and dairy. Oh, yeah, and applesauce. All of these foods are highly binding, in a colon-plugged-up-like-the-hoover-damn kind of way. Needless to say, Peanut is chronically constipated. Always has been. This kid never crapped more than a few hard, dried out rabbit pellet sized turds at a time, and sometimes only once a week. It was horrible.

If it wasn't already obvious, our lives revolve around poop. (Now, I know you can die in peace, knowing that our household is so obsessed with bowel movements.) People who don't poop are extremely edgy, angry, and in a generally Genghis Khan type of mood all the time. I don't know about you, but we don't enjoy picnicking with Genghis Khan on PMS [Christian name: Peanut], so we strive toward getting Peanut to poop so she will be the lovely, adorable, girl I know she is (instead of the murderous rage-inducing mini-tyrant she likes to pretend she is).

For the longest time Peanut was on prescription laxatives. For a Loonnnng time. From the age of about 18-20 months (I forget, isn't that terrible?) until about age 4 she's been on the following high dosage (would make a brick have a b.m.) laxatives: Lactulose, Miralax, and various pre-G.I. surgery type laxatives.

Eew.

Anything and everything we tried to get our child to poop. Most folks could get their kids to eat some greens, or other high-fiber foods and get past the non-poopage issue. Not our little Peanut.

Now back to the present. We've been working with a special Chinese massage study called Quigong. It works to alleviate some Autistic symptoms in kids, and works to fix their bowels. In the case of Peanut, it was a total success in the B.M. department; our little pooper now drops the kiddos off at the pool daily--without any medication. This is like party time in our household. A la Kool and the Gang: Let's celebrate good times, come on! No more icky laxatives for our little girl. The only down-side to it is that Peanut still thinks pooping is going to be this horrendously traumatic event (--can you imagine not having a b.m. for a week or more, and then finally having one? The sheer diameter of the things that would exit her body make me shudder to think of them). I can't blame her for being anxious. So, we still have poop drama.

Most evenings go like this: Peanut gets her jammies on, goes pee, and then we have her sit and relax so that she can 'go.' This is usually followed by screaming, protesting, and the ever present "I DON'T HAVE TO GO POOP!!!!!!!!" We still have her 'try.' (she used to scream "I can't!" but I couldn't stand hearing a 4 year old tell me "I can't" so we've retrained her to say "I tried")

It is usually 3-10 minutes of her complaining, whining, and/or screaming. Then it comes: "Moooomm, I went POOP!!!". And we see she has indeed gone poop, and gone A LOT.

So, you've already read tonight's conversation. I'm sure that someday, in retrospect, we're all going to laugh and laugh about this little 'poop' issue. But right now, with the exception of tonight's ultra-descriptive b.m. most nights it is an uphill battle.

Nobody ever told me that becoming a parent would involve a degree in poop. The things I talk about with my (mom) girlfriends; the things I publish in cyberspace. If someone had told me, before becoming a parent, I'd write a blog entry on crap (no pun intended) without hesitation or embarrassment I would have told them they were full of it. Oh, how things change.

Seeking Absolution...

I normally try to make my posts more up-beat and cheerful--we all have enough drama in our own lives without anyone elses', but today I'm in a bad space. So, here it goes:

My kids are acting terribly, I'm tired and cranky, and I'm feeling pretty useless as a human being right now (can you hear the violins playing yet?).

When I'm in this space I think about social movements in history. The women's liberation movement is something that I think about quite often. Strange, but true. I often think that what my grandmother and mother have done for my generation is both good and very, very bad. The Women's Movement created the possibility of independence, a voice, and choices for women; yet it also took away that which we already had. I am grateful for what it accomplished in that I can go into most businesses, doctors' offices, or any other public place and be treated (mostly) in a fair and upright manner. I can complain and have my complaints heard, addressed, and changes made as a result of them. I can drive a car, vote, have a career, a family; I can have it all, thanks to the Women's Liberation Movement.

Or can I?

Today, I feel the crushing pressure closing in on me from all directions. Dolce et decorum est...said Wilfred Owen (one of my favorite poets, whose works were not discovered for the gems they are until well after his death). It is an old lie. You cannot possibly have it all. I cannot have it all, though try I may.

I had the luxury of being a Stay At Home Mother (S.A.H.M) for a year, after my son was born. I about went crazy the first few months--what the heck do you actually do with a toddler and a newborn all day long, with no help? I had never had the experience of being a REAL mother; I went back to work before my daughter turned 4 months old. I have felt extreme guilt over going to work so soon after Peanut was born because of the relief that I felt to be 'free' again. See, I couldn't wait to return to work. Working was so much easier than being a MOM. I got to love on my girl for an hour or so in the morning, and then whisk her off to my daycare provider (whom I absolutely adore--she is a fabulous human being who truly loves what she does) go to work and then pick her up at about 3:30pm. That left me with about 3 hours of being a MOM before Peanut went to bed. Truly, I was only a parent for 4ish hours a day.

That is not parenting.

Then, along came my Chubbers and I flat out told B.J. I would stay home for the year and be a mom. It was hard, but by the time my year was up, I was loathe to go back to work. I wanted to stay home with my babies. I wanted to be a MOM. I loved seeing all their changes and watching Chub-chub make all his milestones (Chubbers is a Typical child, v.s. Peanut having multiple developmental delays, not the leas of which is ASD). It was such a pure joy. It nearly crushed me to drop my babies off at the daycare and head to work.

Well, here it is, summer, and I am 'off' work for a couple of months. My children and I have to get used to each other again. Learn each others rhythms and needs. We're getting there. Slowly. Peanut is having a tough time adjusting. Her attitude just keeps getting worse. She is mean and nasty to her brother; she screams at me and and her brother, and her behavior is just 'ugly' overall. This makes me feel like crap. No, it make me feel like dog crap. Peanut tells me she wants her teacher. I'm glad, because it means she's having a good time at school. I'm also distraught because, she behaves nicely for the teacher and plays well with the kiddos, but for me she is a terror. I feel so ineffectual. I feel like she would prefer to be at the daycare and at school rather than be home. She has told me she doesn't want to 'go home' after school or other outings. How should I take this? What does it mean? Does she hate me? Is being home so terrible? I take it as she would rather be anywhere than with me. It probably isn't true, but on a day like today, that is how it feels.

Which brings me back to the fact that I can't have it all and that the Women's Movement had a dark side to it.

In the past women were at home, to keep house and to tend the children. Men went to work, and made a decent living wage. The roles were sex-stereotyped, but likely worked in most families (yes, I am aware of abuse, limitations, etc.). Today, women are expected to do all of the same jobs that they did before, just they're also expected to pull in a substantial paycheck to go along with it. The Second Shift details the ins and outs of a modern 'liberated' woman. I fall into that category. Men today make less money than they did 30 years ago (adjusted for inflation) and finding a decent job for them is more and more difficult. Women have bridged the gap far enough to make $.70 to every $1.00 a man makes. Men cannot support their families today as they were able to in the 1950's working a single (non college-degree) job. It is so unfair. Are we really further ahead than our great-grandmothers? It seems, to me, men and women are more depressed, more angry, and their quality of life is much lower than it was in my grandmother's day. Is this supposed to be called progress?

I work. Part-time (really my hours total up to between 35-40 per week). My children go to daycare. Daycare dissolves the majority of my paycheck; once my student loan and some of the smaller household bills are taken care of I have virtually no money left. I see my children after work (between 3:30pm and bedtime) during the crabbiest time of day for them and for me. I am in charge of upkeep of the house, groceries, landscaping, laundry, and other miscellanea. I am not complaining about my husband. He does a good job of being a husband, father, and provider. He does share in the tasks of the household. I just wind up doing more, after all, I work part-time.

Why am I working? I keep rationalizing that my children won't necessarily remember me being home while they were infants/toddlers. They grow up so fast. I'll be able to be there for them after school during their school-age years--where it really counts (I can go to all their activities, be active in their lives and know who their friends are, and supervise them when many other people leave their kids to 'fend for themselves' after a certain age--opening the door to pre-marital sex, drugs, and all sort of other fun things). But, WHY? Why do I work? My paycheck is too small to really make much of a difference. I still do everything I did when I was home for that year. I'll tell you why: So I don't lose my license. I cannot afford to stay home with my kids and lose my license. I worked so hard for it (I got a master's degree after it!!). I can't afford to take the exorbitantly priced graduate school classes that would maintain my license (at $500+ per class/term). Someday my children will fly from the nest. If my licensure is kaput, where do I go? I went to school so I wouldn't have to wait tables the rest of my life. My mother insisted I get a degree so that I could take care of myself should the need arise. As one of my collegues has shown me the need arises all too often (her husband is no longer able to support their family). Had she not maintained her license, they would be homeless. What do I do?

I am stuck.

I feel like I can't go back, and I cannot move forward. The proverbial 'rock and a hard place.' What do I do? What do I do?

I need someone to give me their benediction and tell me that I'm doing o.k. That my kids will turn out just fine. That this season in my life won't go on forever. That I'm doing the right thing.

I need to know that it isn't all for nothing. I need to know that I'm not a bad mother.

Life is hard when you're teetering on the razor's edge in a pair of stilettos while trying to be everything to everyone. Again, I think of the Women's Liberation Movement. Was it all worth it? Am I a happier person because of all the work the mothers of yesterday did? Again, I don't know.

Post-it / Rant-it

The Peanut celebrated her 4th Birthday on the 28th of April. I cannot believe that she's already 4--that I have been in charge of the growth, development, love, and nurturing of another human being for 4 years. I. Have. Been. A. Parent. For. Four. Years.

Wow.

In a nutshell, her birthday party was great. She had a blast. [I'll post pictures. Later.] I can't ask for more than that.

Other than I was a schmuck and forgot to mail one (if not more than one) invitation and left someone special feeling left out. I feel crappy about it. It also made me annoyed at B.J. He has done absolutely 0 beyond the barest minimum to help me out with her party/health issues/etc. lately.

It is annoying.

Like I can reasonably organize:
The Chub-chub; the house (cleaning, shopping, groceries, laundry.....); my job, the three separate Grant proposals that I've been working on at the same time; Peanut's doctor appointments, her therapist, the research study she involved with, her medications(S!!! as in plural); a marriage; planning a party; and maintain sanity without help!?

Yeah. Right.

It could be worse. At least Peanut had a great B'day.

Oprah: On Autism

Oprah has Autism as her topic for today. I'm going to carve out that hour from my schedule to watch the show and see what she has to present.

See, I've been struggling with Autism, or rather I've been struggling with my daughter Peanut's (NB) Autism Spectrum Disorder (ASD) lately. I have been really doing well dealing with her diagnosis and being an advocate for her, but the day before yesterday I just lost it. I was sitting in the hot tub with my husband, B., trying to relax, but I wound up sitting there whining and blubbering about how I felt like I couldn't handle Peanut's ASD. See, we've only had a diagnosis of ASD for the Peanut since February 2007. And we're still in that blinding snowstorm that is trying to sort out our emotions, find the best treatment options for Peanut, and be good parents (all at the same moment in time). It is quite overwhelming.

For example, it is like dealing with your taxes and all the government forms that go along with them every day, just the tax laws change daily, and sometimes hourly, and you aren't privy to those changes. Dealing with the emotions you feel as a parent with a child diagnosed with ASD is like: "here, things aren't the same as you expected, they've changed, I'm not going to tell you the changes, and if you screw up, well....that's just tough. You'll get a melt-down for a reward and you'll have to start from square one. Oh, yeah, and your deadline for everything to be dealt with just got shortened by an undisclosed amount of time. You'll have virtually no support from anyone, and, just for good measure, you'll need to beg, whine, wheedle, threaten and shout to get any services covered by your insurance--that is once you've jumped through the proverbial hoops to get the services in the first place. Tootles! Have fun!!!!"

But, to return to my original train of thought: I'm thrilled that Oprah is going to feature Autism. I've already emailed my family and friends about the upcoming show. I hope that some of them will watch. Maybe they'll get a more open understanding of why Peanut is the way she is, and realize that she's not being a 'bad girl' or that we're not 'rotten parents.' Peanut is just hard-wired differently and has a unique perception of the world that no one else has.