Monday, September 22, 2008

Is it a Monday thing?


Another successful drop off this morning! Last week we had a perfectly zen-like entrance into school on a Monday (and not another day of the week after that), and this week we had a calm entrance on a Monday. Hmmm...should I tell him it is Monday every day?

So while the rest of the world loathes a Monday, my child seems to love them.

Apparently that's just how we roll 'round here in Normal-ville.

In other news, we are about to venture onto a plane that will take us on a nearly four-hour flight halfway across the country. I am more than a little nervous about this trip because the last time I flew with B I swore I wouldn't do it again until he was an adult. I am in no way exaggerating just how awful that flight was for me. (I was alone) I had an incredible arsenal of distractions that would have worked for any kid...any kid but mine, that is. We sat in a window seat, he on my lap, in a fully-packed plane, just six rows behind first class. I guess I must have started the trip out on a shaky note because like a doofus I sat one row behind what was actually our assigned seat. The mistake worked out reasonably well in that I ended up next to a very patient businessman (I know...an oxymoron, right?) who had a severely disabled daughter. B was a delight for the first 1.5 hours and then all hell broke loose for about 20 minutes...straight. And no, it didn't just feel like 20 minutes. It actually was 20 minutes!
Imagine that scene in the exorcist where Linda Blair is tied down in her bed and the demon is fully possessing her. Well, aside from his head turning around in a 360 and vomit spewing forth (though I swear it almost did), this was what B looked and sounded like. I've got a touch of the claustrophobia, so I imagine my son may as well. The child does not like to be restrained in any fashion, be it a stroller, in your arms (except on his terms) or especially on your lap on an airplane. I sweated bullets as I leaned forward in the 6 inches of wiggle room we had between us and the seat in front of us to pull out Elmo dvds, books, snacks, my cell phone, my keys, ANYTHING that I thought would get him to shut up, I mean feel better. Nada. It was all fruitless. At one point I even looked up toward first class and saw a flight attendant saying to a lovely man 'She is trying, sir. I can see her from here.' I made a point to thank this woman on my way out. She must have had children. I appreciated her sticking up for us unlike some of the other horrid stories you hear about evil flight attendants and children who are having tantrums. I am not kidding when I say that if we'd started the flight like this, I have no doubt I'd have ended up on the news after getting kicked off the plane. It was that bad. I even felt embarrassed after the flight when we had to wait for what felt like forever to get our bags from the conveyer belt. I was certain all eyes were on us, cursing us and who knows, maybe even putting an evil hex on us.
I talked to our pediatrician about this last week asking what I could do. Benadryl was all he could offer me. I know we've all heard about it, but no one likes to admit that they've done it. Well, I am about to admit to you that I plan on liquoring the wee B up at the gate before we board that plane. And I just might even give him another 1/2 of a teaspoon if it wears off!

Wish us luck!

Thursday, September 18, 2008

The Set List

Here in the world of the blistless I am unable to come up with something extraordinarily witty to regale you lovely readers, so I am going to steal the idea one of you (hi, C back in A-town!) gave me. Well, stealing would be the wrong word since she actually called me one day with the idea.

I know you've been waiting on pins and needles for the results (not) so let's not waste anymore time, shall we?

*I'd like to preface this by saying that my one remaining brain cell does not currently have the power to compute the precise order in which I would perform the following tunes, so please don't go all psychology 101 on me and tell me that "x" should not follow "y" because it might depress the crowd, okay?

**I'd also like to preface this by saying that I am siting the singers of these songs and not necessarily the songwriters...for those nitpickers out there.

Here goes...

1. Angel from Montgomery - Bonnie Raitt
2. Me & Bobby McGee - Janis Joplin (Though I have to tell you...after way too many karaoke performances I'm getting kind of sick of this one)
3. Lonely Teardrops - Jackie Wilson
4. A Change Is Gonna Come - Sam Cooke
5. Life by the Drop - Stevie Ray Vaughan
6. If I Fell In Love With You - The Beatles
7. When I Think of You - Dolly Parton
8. Long Ride Home - Patty Griffin
9. Little Red Corvette - Prince
10. Ode to Billy Joe - Bobbie Gentry
11. Hurts So Bad - Susan Tedeschi
12. Morphine & Chocolate - 4 Non Blondes
13. Circle of Friends - Edie Brickell & The New Bohemians
14. Not a Drop of Rain - Robert Earl Keen
15. Seven Year Ache - Roseanne Cash
16. Fly - Patty Griffin

And there you have it, folks.

I know there are at least a couple of you out there in cyberland who still have that seemingly-lost dream of singing again. What's your song list?

Tuesday, September 16, 2008

I'm out of private mode & I have a new name!


I did a little google account finagling (wow, spell check didn't correct that word for me...guess those spelling bees paid off!), and now I am no longer spewing my thoughts to the wee eyes of my nieces and nephews. I've had to change the title/url of my blog to make this change complete. You can now find me at: http://thisismynewnormal.blogspot.com

I am also happy to report that today, 17 days into the school year, we had our first, fuss-free, didn't-have-to-drag-him-in-by-the-wrist-or-carry-him-like-he-wasn't-45 lbs., nobody-stared-at-us, drop-off at school. I hope that by typing that I haven't totally jinxed us.

We have been treating yeast and bacteria in M's gut off and on for nearly six months. For those of you not familiar with the biology of kids on the autism spectrum, it is thought that most have what they refer to as autistic enterocolitis, or leaky gut. So while all of us have a variety of weird bacteria and yeast growing in our stomachs, it does so fairly harmoniously. But in kids with autism, the numbers get out of balance and leak out of perforations in the gut affecting their entire nervous systems. I'm probably not describing this totally correctly, but you get the gist. It's still a very controversial thought, but it does resonate with me as I know that pretty much every kid on the spectrum that I have heard of has some sort of tummy problem. And when we don't feel good inside, how can we show anything different on the outside? Anyhow, we did some pretty aggressive antibiotics and are now almost done with a 20-day course of an antifungal medicine. I was warned that M's hyperactivity and stimming would likely get worse before it got better. Boy, howdy, did they! But I am skeptically wondering if we have turned a corner. He's still chewing like mad, but he just seems a little calmer to me. He is also trying to string all of his words and phrases together, as though he is really, really trying to hold a conversation with me. When he does it, he holds his arms out like he is orating and gets a very serious look on his face, with his lips pursed just so. And he says things like, 'And so...anybody, another time, Playhouse Disney, one more time, read a story, sometimes...' And he has these great inflections like he is really trying to get you to think about what it is that he is saying. Because it is very important, and he is working really hard to say it to you. And I listen intently, nodding occasionally, and repeating some of it back to him in order to create some semblance of conversation. Bless his heart, it must be really frustrating to want to say what is on your mind, but to not be able to find the right words or even be able to form them. I am trying my very hardest to remember what this must feel like from his perspective. Sometimes it is hard to be selfless when you find you are also struggling. How can you help someone else if you can't even help yourself? I've heard that said over and over and until this past year hadn't realized how true it was.

Fall is right around the corner. You can feel it in the air, see it in the store windows. And of course with football season here, you know it's in reach. I always find myself sleepier this time of year. I recall days since I was probably around 12 years old where I could sleep and sleep and still be tired. Almost like a bear in hibernation. But this year; this Fall; I am finding that through the sleepiness I am trying to turn a corner for myself and for my family so that we can get through the cold months and find ourselves reborn and rejuvenated next Spring. I think that's about how much time we'll need to totally get ourselves on track. But it's happening...I can feel it. I just have to keep the forward momentum going.

I'll leave you with a photo of my two boys this past weekend enjoying a swim.

Monday, September 15, 2008

Practice


There's no doubt about it. He is my and the other half's son for sure!

Friday, September 12, 2008

Hurricane Party

Hope all of my Texas friends are safe and dry through the night. Those of you closest to the storm, be sure to check in and let us know you're okay.

I leave you with a lengthy recording of a once upon a time, not quite as fat, really great, live band; straight out of New Orleans performing one of their classics, "Hurricane Party." Ladies and gentleman...COWBOY MOUTH!

Thursday, September 11, 2008

Vicki Webber...can you please call your sister?

About two months ago we started receiving phone calls from a 'Stephen Dominion' in the 510 area code. My other half took the first call from a sad-sounding, older woman who thought that he was Vicki. He politely explained to her that she must have the wrong number to which she said, 'Oh, honey, I'm so sorry. I'm just trying to reach my sister to tell her my husband died.'
Well, shit. What do you say to that?
He naturally told her he was very sorry about her dead husband, but yes, once again, there's no Vicki here.

Since that call we have probably received 10 calls from Vicki's sister, perhaps more. I think I have had the good fortune of answering them each time since that first. And each time she acts as though she has zero recollection of the last call. I am pretty sure she is drunk, though I'd feel really bad if it was something as awful as Alzheimer's.
Every single call goes pretty much the same way:

Me: (recognizing the phone number on the caller id) "Are you calling for Vicki?"
Her: (sounding very surprised that I know who she is calling, as though I have ESP) "Yes. Yes. Vicki? I'm calling for my sister, Vicki?"
Me: "Yes, I know you are calling for your sister, Vicki. You call us a lot asking for your sister and we keep telling you that we apparently have her old number."
Her: "Oh, I'm so sorry, honey. I was trying to reach my sister."
Me: "YES. I KNOW THAT."
Her: "It's just that I need to tell her my husband died."

And then the continuation from this evening's latest conversation:

Me: "Listen. I am truly sorry about your husband dying. And I am sorry that you are unable to reach your sister to tell her. But you have been calling us for two months now, telling us about your dead husband, and I tell you every single time that you have the wrong number."
Her: "Oh, no, honey. I haven't called for two months."
Me: "Yes, you have."
Her: "No, I haven't talked to my sister in over a year."

Me: (banging my head against a wall)

Her: "I guess I will have to call my aunt to get her new number."
Me: "Yes, I think that would be a very good idea."
Her: "Okay. Thank you, honey."

And I have no doubt in my mind that this will all occur again by next Monday. In fact, I am willing to put money on it.

Damn. It's a bad time to have gone private on this here blog. I mean, Vicki could have been reading and she would have the known to call her crazy-ass sister.

Oi. Vey.

To add to this, Vicki apparently does not want to be found by family or creditors. We also went through a three-week stint where Citibank called us EVERY FREAKING DAY with an automated message that our bank card had been overdrawn. These kinds of calls freak a family who had EVERY SINGLE ONE of their social security cards stolen by their movers (yes, you read that correctly). Especially when you call the phone number and not one single person has a freaking clue what you are talking about or how to stop the annoying calls from coming to your home. After many phone calls, transfers, and promises to fix things, someone finally figured it out and those phone calls have stopped.

But we'll still have Vicki's drunk sister. Thank the stars for that!

Wednesday, September 10, 2008

I've decided...

...to go semi-private here. I've sent a bunch of invites out, so hopefully you received one! And if not, hopefully you'll realize that you can't view my site and you'll email me. But how would you know that I am hoping these things? You can't if you didn't get the friggin' email! Oi...I am over complicating yet another aspect of my life :)

Supposedly if you are a blog author you should be granted automatic access.

And now to see if anyone still reads this. I'm hoping that I'll have some hangers-on. I also am still very happy to grow the readership, so feel free to ask me to add someone. I really do want to be public, but I realized that in responding to some other blogs I was stupidly linking my nieces and nephews to my blog. And really, they don't need to read this crap, do they?!

Onward and upward!

Monday, September 8, 2008

What's Your Story?

No talk of autism, bureaucracy, schools or insurance companies today!! (For some reason I envisioned Kermit the Frog doing his 'yyyyeeeeeeaaaaa!' with his little frog hands going wild as he departed the stage after announcing a performer on the Muppet Show. You too?! No? Huh....)

Anyway, yesterday I saw Jesus on the side of Highway 1. And if it wasn't Jesus, then it was someone who a.)thought he was Jesus, or b.) was a distant relative of Jesus delivering His word.

You think I'm kidding, but I am not. Oh how I wish I'd had a camera.

As I drove M to horseback riding we passed by a man with a foot-long white beard, a turban on his head, a white, flowy robe with a dark green shawl over it, leather, Teva-like sandals, and what I am pretty sure were Rayban sunglasses. He was walking along carrying nothing but a simple bedroll. An hour and a half later as we returned home, he was sitting on the side of the road taking a rest. He didn't have his thumb out. He carried no signs indicating his desire to go to 'Santa Cruz' or elsewhere southbound. He was just a dude walking along the beautiful Pacific Coast Highway looking like a prophet.

It made me think how often I see random folks walking, cycling, thumbing their way down this highway. Way more than I have ever noticed anywhere else I have lived. I suppose the ocean calls many this way. It is a beautiful road to travel, to say the least. But what's the deal with some of these people? Where are they going? Do they even know? Do they have a permanent address? Is anyone looking for them? Do they have children who miss them?

I think quite a few of these people are drifters. I used to find the thought of being by oneself horribly saddening and lonely. I have this weird recollection of sitting in a KFC in Bristol, Tennesse, on our family's yearly drive in the two-door Pontiac from New Jersey to Arkansas, to visit relatives. I was probably about seven years old. We were eating our chicken in a booth and there was this shabbily-dressed old man in the booth behind us. I vividly remember watching him eat and feeling that this man was very sad and lonely and that he had no one in his life to eat with or be loved by. I cried when we got back into the car, but couldn't tell anyone why for fear they would think I was silly.

Now when I see people who are alone I just wonder if this is their destiny and if they are happy and content where they are.

I think I'm going to write a song about this. Can't you just imagine it?

I saw Jesus walking down Highway one.
He didn't have a sign or a hitchhiker's thumb.
He had a white beard and a robe made of white.
He was walkin' along no destination in sight.
I think he was a drifter.
I think he was alone.
I think he was a-lookin' for a river to throw a stone.
I saw Jesus walking down Highway one.

Thank you very much, I'll put the pipe down now.
(I kid...really!)

Friday, September 5, 2008

I don't get it...

It's been a long, first two weeks of school here. M has not been adjusting well, and the other half and I are beside ourselves as to figure out what is going on with him. I literally have to drag or carry him down the sidewalk and steps that lead to his building each morning. It sucks. The aides are trying their hardest to help me work through it. They meet us at the base of the steps now and we do a quick hand-off so as to not prolong the tantrum. Supposedly he calms down pretty quickly after I leave. Did I mention this sucks?
This isn't my kid. My kid likes going to school. My kid only had the rare tantrum while walking into school, and in fact usually barely even looked back at me as he grabbed his teacher's hand. So what is going on here?
The news got even worse at last night's back to school night. I spoke afterward to his new teacher. She, like everyone at this school, is absolutely lovely and truly trying their hardest to figure out my little guy and how to help him to work to his potential. But the truth is, M, whose autism once presented as PDD-NOS, (For those lucky enough to not know what that means, it stands for pervasive developmental disorder-not otherwise specified; or someone who doesn't meet all the criteria for classic autism and is considered high functioning), now presents much more classically autistic; and the staff just doesn't have the kind of training necessary to deal with it, in my opinion. His little body cannot stop humming and moving. He flicks his fingers in front of his eyes quite frequently while making these guttural sounds, which for him, actually indicate pleasure. But for me, indicate autism. He has hundreds of words and can indicate simple needs, but he seems to choose not to be conversational at most times unless you are fortunate enough to have one of those 'moments' with him where he's really with you. Anyhow, I asked the teacher if he was floundering and she confirmed my fears. She said that he is 'content in his own little world,' and that 'he prefers to flick his fingers, talk gibberish to himself, and tick instead of engage in one on one teaching activities.' Even though I've witnessed this myself at home over the past five months, it hit me straight in the gut to hear it from the teacher.

So here's the real intent of this post and the thing I hope everyone will give some extra thought to after reading: At the beginning of the back to school program, a member of the parent-teacher organization spoke about the year's fundraisers and what past funds have been used for. Last year, the PTO raised $67,000. All of that money is already spent for this year's areas of need. I was so taken aback from one of these things that I failed to remember the other two. The parent said that unfortunately they just weren't able to cover music this year for the school like they had the past few years and that this year the school also presented them with the urgent need for some of this money to pay for physical education. You hear about p.e. and music being cut at schools all around the country, but in truth, I've never actually been at one of 'those schools' and apparently was living in quite the little suburban bubble.

I came home and watched part of the Republican Nat'l Convention and I apologize for spewing political venom here, but I was MAD! I had knots in my stomach as I watched these politicians, who if elected again are just going to continue spending money on invading other countries or drilling for oil and NOT where we need it: on our children. In our schools. Places that are really going to make a difference.

If there isn't money for music...and there was money for p.e. only because of the parents...there isn't going to be money for my child to get the fair education he has been promised by our government.

Vote for real change.

This has been brought to you by a pissed off Mom who wishes none of this bureaucratic b.s. that I have to deal with on a daily basis with schools and insurance companies on anyone else and hopes that before you think that Sarah Palin, the mother of a child with Downs Syndrome, is going to be a great advocate for parents of children with special needs, that you realize it is all just a sham. She actually cut 62% of the special education funding in her home state as governor.

Okay...somebody get this girl a glass of wine :)

Monday, September 1, 2008

Quick update

Just wanted to let you all know my Mom is going to be okay. She went home from the hospital today and is feeling much better.
Thanks for all the good thoughts!

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