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.

...the blind will see...the lame will walk

Life has a funny way of coming at you--especially when you least expect it. One of the great promises in life is that 'you'll never be given more than you can handle.' I love this promise, because when I'm gasping for air, and the life-ring is too far to reach and the waves are crashing over my head, threatening to pull me under for good, something comes along and buoys me up just long enough to grab that ring, and I make it to safety.



Autism is often that sea that I find myself sputtering in and desperately trying to tread water in order to stay afloat. Peanut has a form of Autism, PDD-NOS (there is debate as to whether or not PDD-NOS is under the 'Autism umbrella' or if Autism is under the umbrealla of PDD-NOS...but, for what is is worth, if you've got either label you're seeing and experiencing the world in a different way.). And, one of the characteristics of PDD that she has is speech and language development delay (communication disorder). She wants to talk to us, tell us things, but the way she can communicate is not always the conventional way that we can and do communicate--leaving both she and us frustrated and incommunicado.



I, just this very hour, read a wonderful article about a 13 year old girl with Autism who was unable to speak (she has apraxia--as in NO language at all) whom, for the first time in her life, has found a way to communicate with her family, and , consequently, the world. Before, the family and 'specialists' thought her to be possibly low functioning cognitively and unable to communicate--other than in non-standard ways (screaming, hittng herself, banging on furniture). She found a way to talk. To commuicate; and, she does so very effectively.



You can read all about her miraculous story of hope here.



Please read it, and file it away in your memory for the next time you're out in public and you see a person having a 'melt-down' or a 'fit' --self-injurous behaviors, screaming, yelling, and the like. Maybe, like the little girl in the article, they just haven't found a way that we understand to communicate with us.



God works in mysterious ways. This article was one of those ways He worked for me: I've grabbed hold of the life-ring, and am being pulled into safety.

A (un)Healthy Heaping of Guilt

I received a link to a wonderful article today. It deals with the guilt that parents of children on the Autism Spectrum feel.

Boy. That surely was a big mouthful.

Yes, it deals with guilt. I think becoming a parent (period!) lends you a heaping helping of guilt to an often previously guilt-free (to a certain extent, of course) life. Having a child with any form of disability gives you that same helping of guilt, just multiplied a few dozen times. As the parent of a disabled child and a 'typical' child I feel like I can speak on behalf of both camps. Between the two opposing sides, I'll take the guilt involved with 'typical' parenting, thank-you very much.

Sigh. I've often wrote of my struggles with parenting my little girl, Peanut, here. In fact, I find that I write about it often enough that one of my 'tags' or post-labels is 'parental struggle'. Isn't that fun? No. I didn't think so either.

I really appreciated this article because it addresses so many facets of the guilt that parents of Autistic children feel. The feeling of 'not doing enough' or guilt that you 'should be doing more' is what really struck a chord within me. I find that I am constantly 'should-ing' myself to death: I should do this...I should contact this specialist....I should be doing MORE to help her out; this form of self flagellation, the act of 'should-ing' myself is a non-productive habit, yet I still engage in it.

According to the article's author, Jene Aviram, I am not alone. I'm normal. All parents in this subset of life, Autism, feel like they're not doing enough. Each of us looks at one another, and we do, and compare ourselves to what the 'other' parent is doing: we always reach the same guilt slathered conclusion--they're doing so much more for their child; I should be doing more to help my Peanut out. Aviram tells us to stop. She seeks to give us that unattainable absolution; she wants to give us permission to take a break, and just be.

It doesn't sound like a novel idea to the parent in the 'typical' camp of parenthood "take a break," but really, it is. Just like those who work in education, public health, or social services know, there is always more that you could or should be doing. You fall into that trap of 'well, if I skip this break, I'll be that much further ahead.' Just the only thing is, there really is no getting ahead. There's always something else to be done, someone else who needs help. It never ends.

Thank you to D.C. for sending me the link. I highly recommend reading this article: THE GUILT FACTOR by Jene Aviram, found on the National Learning Concepts Website.

Perhaps you don't have a child with Autism, but I imagine you know someone who does, or someone who has a child with another form of disability--I think this article can be applied to any other disabled child, as well. It is all about perspective. Enjoy.

Click to help Autism Speaks

I received this today:

Please everyone click on the site, you will be touched forever then forward it on.

Watch THIS video clip...click HERE

The band, Five for Fighting, is generously donating $0.49 to AutismSpeaks for *each time* the video is viewed. The funding goes toward research studies to help find a cure. When you have a moment, please visit the link to watch the video and feel free to link to me, or copy/paste and pass it along to your friends and family. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal.

1 in 150 children have Autism. If you think it doesn't touch your life, you're wrong. By reading this blog, and knowing me, you know someone who loves a beautiful little girl with Autism. By knowing me, you're separated from knowing someone who has Autism by 'one degree'.

This is something that affects all of us. Please, if nothing else, watch the video and learn some new facts.

Thanks, and warmest regards.

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.

I'm trying to link to someone else's blog...

My friend, Melody, sent me a link to her sister's blog with something she and her family wrote. They were guest bloggers on her sister's blog and chose to talk about the unintended insensitivities that people have when dealing with families of developmentally delayed children:

Things you should never say to parents of children with special needs:

http://aprilhenry.livejournal.com/142086.html

I really appreciate what she wrote. #6 is especially true for me.

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.