First haircut; g'bye Rapunzel

We did the first haircut today. Couldn't take another grudge match trying to comb out that tangled mop after bath. It was long enough to donate (10 inches) but that would have put the length at a short bob--and short bobs are hard enough to cut well even on an adult who can sit still. So forget cutting a perfect bob on a moving target. We just did a shoulder length basic cut. Bye bye white blond baby ringlets... but her hair retained the curl after the cut, so they will probably grow back.

The hairdresser was relieved when I said, "Just do your best." She said most moms get petty, even though their kids won't hold still.

And mine can't hold still if her life depended on it! Good grief.

We went to a place that's just for kids. They get to sit in a little toy car and watch a movie during the cut. Luckily we were the only ones there. However, because we were the only ones there, the other two hairdressers decided to vacuum their stations...so vacuums were going in stereo, next to a kid who has sensory issues with most any noises! She was turning her head to glare at the vacuums going on either side, all while a lady sprayed her with a water bottle, touching her head and face, pulling on her hair and calling her honey/sweetie. Oh, and the entire event got off to a rocky start when the hairdresser placed a Toy Story smock on her. She is terrified of Toy Story characters. I saw her horrified reaction and asked for a different smock. Just in time, we got penguins instead.

By some miracle we averted complete meltdown. I think she was too surprised that such terrible things were happening all at once that she couldn't react fast enough.

Or maybe, the days of Rapunzel are over--without the hair, her power is broken!!!

Overall, the cut went okay. She took issue with being called her name, of course. Honey and sweetie did not fly either. She went by the name, "worm," unfortunately. And when we were offered a free blow dry I quickly and firmly answered, "Oh, NO thank you!"

That would have been a really bad end!

No thank you Washington State Medicaid

Apparently a categorically needy child can get great healthcare, but look out if that child becomes disabled! Then all  medical coverage is stripped away and replaced with 'imaginary' coverage known as 'open card.' This means that in the eyes of Medicaid you have all the coverage you want--except for the small problem that no clinic or doctor in the state accepts 'open card' on a new patient.

Excuse my language, but--

WHAT THE FUCK!

This is how we in the USA treat our disabled and poverty-stricken kids???

I'm a single parent of an autistic child who needs a regular doctor and therapies. I can't just run out and grab any old job due to the basic logistics: that I am only one person; I can only earn one income; how can I earn an income at a full time job while ferrying my child around to therapies?; and, how would my child get those therapies if she was stored in a daycare center full time because I have to be at a job full time so that I can get health insurance so that she can see drs and get therapies?

Any way I look at it, there is no way for a single parent of a disabled child to get the child the medical help that the child needs.

I think the best thing for my disabled child is to GET OFF OF SSI, which is ironic. SSI has been the worst thing that could have happened, besides the autism. If I would have known, I NEVER would have applied.

UPDATE: I found out how the "open card" thing works. Can't use it at the door anywhere, but gotta find a back door. A doctor can decide to take it or not. So have to get past the bitch at the front desk who will just flatly tell everyone "NO" and act like it's their policy. It's not a "CAN'T," it's a "WON'T." See, they "CAN," if you can find a way to get another doctor to make a call, or a friend/family to ask their own doctor on your behalf, etc. It's all about who you know. Luckily, I have some good connections to work with and good communication skills. But what about those who don't? What about the single moms out there with disabled kids who don't have family help or education or communication skills? For sure they are the most vulnerable in our society. But for my college degree and writing skills and absence of drug/alcohol addiction and having all my teeth, I'm nearly there, and can tell you it's a scary place to be.

If my life were a country music song

You know that joke about listening to a country music song backwards, and the sad singer would then get all his shit back (wife, truck, gun, dog, etc)? Well, if my life were a country music song....it would be way too complicated to make into a song! So never mind.

Let me just name the things we have lost this year:

1. Our dog died

2. Daddy was moved to a prison where we can't visit him (and that was supposed to be because of his GOOD behavior--what would they do if he was behaving badly?)

3. Lost our autism drs and all the therapy appts I had set up to cover us for summer break (apparently you can get Kaiser Permanente if you're poor, but not poor AND disabled), and SSI has given no info on how to even get a primary care dr

4. And now....our school is being shut down. Budget cuts. They are closing the district's only early childhood center and think they are going to move the entire program into existing elementary schools. 3-5 year old special needs kids mixed in with big typical kids? Don't think so.

5. Oh, and don't forget my mind. I have definitely lost my mind.

Information Clearinghouses

That's the word for it: information clearinghouses. In my quest for services, whether it's a government or nonprofit agency, that is what I have encountered with each call: I am given a list of more phone numbers to call of other information clearinghouses. But rarely any actual help. There is someone at a desk working from a directory of numbers that they give to the caller, and at the other end of all those numbers, are other people sitting at a desk with the same directory of numbers. And the bottom line is always: we can't help you, but try these numbers. 

All of the so-called autism/disability orgs in my area are like that. I envision a closet-sized empty room with a dusty desk, one phone number directory, and one zombie worker taking calls and reading off phone numbers. In modernized orgs, there is a computer where the zombie worker also routinely copies/pastes links into reply emails. Redirecting. Redirecting. Redirecting. 

This has happened to me with small local nonprofits, school district services, and even celebrity nonprofits like Autism Speaks. All I ever receive as replies are more phone numbers and web links. Redirecting. Redirecting. Redirecting. 

Information clearinghouses work toward creating an illusion of presence, offer nothing tangible, and soak up valuable resources that could be allocated to something "real."

Round and round we go...

Just when I got the two biggest burdens of my daily life lifted--turns out they were really just up there to gain velocity before squishing me like bug.

After two years of doing a 3-4 hour round trip trek to visit my daughter's dad in prison--and then 2 months of Meltdown City when he was temporarily moved to a place that can't accommodate special needs kids--I finally raised enough hell to get him moved 10 minutes away, to a prison with a nice playroom for kids.

Well, that lasted 2 weeks before all that luxury--and my daughter's happiness--was yanked away and he was arbitrarily moved someplace even farther than the first one, and up in the mountains, and no playroom there...

As if that weren't set back enough....we just got approved for SSI benefits. Good news you think, right? Wrong. I just found out it means my daughter's medical is ending, and she's being moved to some sort of crack clinic insurance. So these great doctors we've had, whom I've been on a great email basis with (can email them anytime with any crazy question and they respond right away!) are all going bye bye for us. And all the speech, OT, and psych appts we had coming up, and all the therapies we had lined up to cover us during summer vacation--all gone. If I would have known this would happen I never would have applied for SSI! Good doctors are so hard to find! And we have been on waiting lists to get services going for summer!

This would be VERY upsetting, if I hadn't already just now finally clawed us back into this same medical network after getting bumped out already once this year after a previous change in benefits thanks to the guv'. After hours on the phone between the guv' and Kaiser membership services, pacing and pulling out my hair, I had finally just gotten it all ironed out and we had just settled in once again. So this makes it EXTRA VERY upsetting!

I have said before that dealing with social services really is like an MC Escher painting: I went in this morning to find out more about these weird conflicting letters I've been getting. (One says we are no longer eligible for medical, and the next says we are getting medical, and both came in the same envelope! Even though we're already getting medical and I just wanted to make sure it wouldn't change!) And was promptly told that no one there can talk to me about medical. Okay...so how do I speak with anyone, since there is no way to get through to the welfare office on the phone? I was given a "special" number to call the state capitol Medicaid office. I called a few times, and the number was only a busy tone. Either an old number or decoy number to send me on my way. I also asked for information about "Division of Developmental Disabilities" and was given directions similar to: down the hall, take 3 lefts, then 4 rights, go up the stairs, go down the stairs, can't miss it." I did all that. Scoured the whole stinky welfare building, holding my nose (the best parts of it smell like a Motel 6--it's the smell of despair), and never found it. Went back. Reported faulty directions. The worker actually came out to walk me to it, and turns out the office where she thought it was has been acquired by some other sprawling bureaucratic entity now, and a worker there got out a directory and informed us the DDD is actually located across town. Okay... take 6 lefts, 8 rights, 3 diagonals, 8 interdimensionals, put on your 3D glasses, and it's right there, in the 4th dimension. Can't miss it.

Below: the demented labyrinth of social services.

Autism Movie Picks

Home on a Friday night with nothing to do? Well, nothing makes a party like Preschool Prep Co.'s Meet the Shapes! Yeah, that's what I used to think, until we met...Meet the Numbers!!!

No matter that she's known her shapes, numbers, etc since she was 2, to someone who is addicted to anything repetitive, these videos are the equivalent of a Hollywood thriller, or a Hollywood cocaine habit. She stands right up against the tv, riveted, to see if the lady will say it again: "Octagon...OCTagon...OCTAGON...octagon..." They do the whole spiel with all the basic shapes. And now that we have Meet the Numbers, there are some wild times around here: "Seven...SEVen...SEVEN...seven..." But when we put it on looped play, look out, that's when the wheels really come off the wagon!

And this is what the prisons do....

We had been visiting her father in prison regularly for over two years at the same place. It wasn't great. It's prison. But it had a playroom for kids and she was used to it. Then his sentence hit the under 4 years mark which made him eligible for minimum security, and at that time, due to mindless, ruthless, robotic Corrections population management (and a very lazy counselor), her dad was moved to a min security place without a playroom and no accommodations for small children let alone an autistic child who can't sit still in a chair and who would be disturbed by the crowded, noisy room without a kids playroom to go hang out with daddy. So....mean mad mommy bear came out swinging with the emails, phone calls and letters, bugging them until the even lazier counselor there cried mercy and shipped him out to a place only 10 mins away from us (no more 4 hour round trip drive) that has an AWESOME play room. Well, I should have known it was too good to be true. We got to visit him two weekends in a row, and miraculously, her meltdowns subsided and I was almost wondering if we would need the psychological evaluations scheduled for later this month (the psych eval appts were from the 2 months we couldn't see him due to lack of accommodations for us). Well, turns out we will need them, because the Oregon Department of Corrections cares NOTHING for the needs of children of inmates. They just throw the whole family away with the inmate. They arbitrarily picked him up and moved him to a work camp up in the mountains, and not only is it UP IN THE MOUNTAINS, but there is NO PLAYROOM! So we are doubly screwed now. He has talked to his counselor there whom I understand is not nearly as much lazy as she is a complete and total heartless bitch and she says our predicament does not qualify as "legitimate hardship" in order to move him back close to home. How about if I call her during one of our daddy meltdown sessions around here? She can explain what "legitimate hardship" means to my 3 1/2 year old autistic child with receptive language disorder and emotional problems. I don't think my daughter will understand it any better coming from her than she will from me. But I'm the one who gets to handle the nonstop meltdowns now. So look out psych evals, here we come!

Oh, and the move up to the mountains to the work camp isn't a punishment. It's only for inmates with the best behavior scores. Nice way to reward good behavior, by tearing someone from their family and making a little girl cry. Oregon Department of Corrections claims to value family as part of rehabilitation, but their practices show the opposite. They are a despicable operation. No wonder recidivism rates remain high. Inmates are not able to maintain family ties due to being moved out of reach and it's too expensive to call home because of the ROBBER phone company the DOC contracts with - we're talking anywhere from $5 - 25 per 30 minute call depending on where you are in the state.

It's easy for outsiders to believe if they were in our situation that they would take the "tough love" approach and take the incarcerated father out of the child's life. Sure, yeah. The statistics for children growing up without a father are just....wonderful. That approach might make sense if the father was dangerous or violent or was never much a part of child's life anyway. In our case, my kid is a daddy's girl. He was her first parent while I was recovering from emergency c-section. Before the duii accident, he had a home business so he was a work at home dad, while I worked outside the home. I made the choice to keep him in her life even after he threw us away with his decisions, because our daughter doesn't understand that. What she understands is this, "I have a daddy. I have a mommy and a daddy" -- as she most recently says -- and I'm not going to take that away from her.

Meet "Stripe"; I love you, whoever you are

Okay, today her name was "Pickle" all day again, with intermittent appearances of "Curious George," and then she decided she likes the stripes on her pj pants, so in the obvious course of events, she went to bed as "Stripe." Definitely a new one!

Oh, and she's been saying, "I love you!" this past week, for the first time. It was really special, until she said it to a store clerk today...

"Context"; the inner world; social stories

Had a breakthrough moment of understanding, regarding a speech therapist's explanation of "context" and how it affects *Lightning McQueen's speech. I was describing how we drove by my old high school and I casually mentioned, "Hey look, there's where Mommy went to school when Mommy was little." As usual, I quickly regretted trying small talk with her. All she heard was "school." And yelled about school: "No, I don't want to go to school! I don't want to!" Again I tried to explain what I meant: "A long time ago, when Mommy was little, Mommy went to school just like you do." Again, total misunderstanding: "No! I'm not little! I'm not!"

sigh.....

I described all this to one of our speech therapists and she mentioned something about context, and how with autism, there is an even greater difficulty in perceiving context. I was bent on finding out more about receptive language problems, so what she said seemed too simplistic--until the next day when I saw "context," or lack of it, in action.

My daughter was looking at a book across the room from me. She began pointing to something on a page and repeating, "What's that?" again and again. I was washing dishes and could not see the book. "Show me," I kept encouraging her to hold up the book and show me the page. I never left my spot or moved closer, just kept trying to get her to hold the book so I could see it. I got her to hold the book up all right, but she would not turn it around so the page was facing my direction. I said, "Turn it around." And all that made her do was turn it upside down, but still facing her! aagghh! She just could not for the life of her understand why I do not have x-ray vision in order to see THROUGH the book to the thing on the page she was pointing to. She finally got up and walked over to me, with the book, still holding it so only she could see it, and tapping her finger on the page where she wanted me to look, and looking at me expectantly like, "Well? What is it?"

Yeah...so absolutely no ability to imagine another person's perspective, at all. No context whatsoever. Her only context is her own. If she's not in it, it doesn't exist--or like the Mommy going to school conversation, she places herself in all contexts because in her mind, she IS her own universe. It's the "inner world" thing. To her, there is nothing else.

But I'm still not sure why social stories don't work on her. We have one about "the weekend." All she does is see a picture of herself and the school building and doesn't seem to comprehend the message of the story: that it's the weekend; there is no school. I think even a social story is still too abstract for her right now. She loves books and is either interested in the pictures or the words (like anything fun to say over and over again), but does not seem to put both together or understand the message or plot. For instance, with The Grouchy Ladybug by Eric Carle, she likes the pictures of the ladybug and other animals, and LOVES to go around asking everyone and anyone, "Hey, do you wanna fight?"--but she has no clue that the message of the book is that fighting does NOT make the ladybug happy and it is not a good way to make and keep friends. Great...thanks a lot Eric Carle.

[*that's the persona she wore to bed tonight, but was "Pickle" all day at school]

Is anybody out there?

Are there any autism researchers, developmental pediatricians, special educators, etc out there looking for an interesting case? What we've had going on here for about 6 months now seems to be an anomaly in terms of "typical" (whatever that means) autism traits.

Six months ago my 3 year old (4 in July) began using nicknames. It started as a cute quirky thing, but has spiraled out of control into a fixation that is keeping us locked in our home, and keeping me from being able to even speak to her. Now, she changes the nicknames randomly throughout the day, they are always a character from book/movie/tv and if she hears her real name she absolutely freaks out. She freaks out on me, her teachers, her classmates, our family, her Sunday school teachers, everyone. And apparently even the pronoun "you" means her name, so that can't be used either. Also, when her teachers have tried to humor her and write her current nickname on her papers, she flips out on them because she insists that all of her nicknames are spelled like her real name. This isn't just a fun game to her. Even in times of intense play and fun, and someone slips up and says her name, the activity abruptly stops so she can frantically correct the error. People everywhere--and I mean everywhere--are saying to me what an imagination she has and how "precocious." If it were just imagination she would not cling to it so rigidly--she would forget about the "name game" here and there. But she never forgets! And you'd think if it were just some fun imagination game that it would be more FUN, that it would more of a happy thing. But in fact, she is plagued by night terrors about this whole name thing. At night she yells and screams the same stuff about it as she does when she's awake. I try not to encourage it. I don't use her name and try to avoid saying "you" (which is pretty difficult--try it) but I don't call her by her nicknames either.

For example:

I said: "Good job!"
She said: "Good job, Lady in Pink!" And continues to repeat that, hoping that I'll say it back. I just say, "Yep, good job" and do not repeat the name.

Another example:

She says: "I'm Blues Clues, Mommy. I'm Blues Clues."
I say: "Okay" or "Sure" or "Uh huh" but don't linger on the issue

It's really embarrassing when she adopts names of kids at school, like "Eric" or "Domonick."

Also, despite all discipline methods I've used (spanking, take away toys and privileges), she still spends 99.9% of her waking hours being absolutely contrary, oppositional and defiant. Also, she responds to most anything I say in one of two ways:

1. purposefully taking oppositional stance:

Example:

She said: "Snow's all gone."
I said: "But it might snow again tomorrow."
She said: "No, next time!"
I said: "Yeah, maybe tomorrow.
She said: "NO! No 'maro. NEXT TIME!!!"
(That one erupted into a massive meltdown because I didn't repeat "next time.")

 2.  angry outburst or meltdown because she misunderstood what I said or frustrated by the receptive language problems.

Example:

I said: "Go ahead."
She said: "No! NO go head. GO HAIR!"

And there are fits when we talk about anything to do with time. Like, we're going to do this and then that, afterward. She thinks the "that" replaces the "this." No understanding of "after."

So many parents online report their high functioning autistic child to be so delightful and wonderful. Mine is supposedly high functioning autistic also. But our experience is far from delightful or even bearable. I'm wondering if maybe we've been hit hard by the terrible 3s, and the autism has even further intensified it.  Has anyone experienced a high functioning autistic child like what I have described?

Now they know autism is not mental retardation

I saw an interesting explanation for the dramatic increase in autism diagnoses--it was that other diagnoses, like mental retardation, were mistakenly attributed to autistics. I can see how could have happened, back before expanding knowledge and research about autism. My daughter comes across as "slow" and maybe mentally handicapped at first glance, because of her wild behavior, poor social skills, and delayed expressive/receptive language. However, cognitively, she is advanced. She's got the whole pre-math checklist for Kindergarten in 2012 nailed already. She's known the alphabet since she was 2 and now beginning to try to read. She's crazy observant and brilliant with problem solving. But she can't do a back and forth conversation, and shows both joy and frustration by shrieks and screams and flails and all sorts of nonverbal extreme behavior. I can see how she would be mistaken for "slow" and then once she's labeled that way, there goes her chance for progress.

That's one thing that bugs me about her special ed preschool program. It's not designed for autism. They don't acknowledge anyone's medical diagnosis. Everyone is there because of one or more areas of the evaluation where they fell short of the benchmark. In our case it was speech and sensory/social. And that's what they are working on, and the academic curriculum seems to only be designed for those who tested below cognitive standards.

For instance, the speech therapist was showing off to me one day what my daughter can do. She held up a picture of a dinosaur and asked her what color it is.

"Green," my daughter said automatically--because she has known the dozen or so basic colors since she was 2! Besides barnyard animal sounds, colors were the first words she could really say with any coherence. So, the speech therapist was excited she knew the color green, at age 3 1/2...and it makes me wonder what else they are "teaching" her that she has already known forever, when she could be moving on to other things.

However, it's a great way for her to get private speech and OT; group speech and OT; and, classroom time, all at the same time, under the same roof. And for free. So, not really complaining here. Just concerned she's getting what she needs, as usual.

Advocating, advocating, and more advocating.

Happy Autism Awareness Month

What's more frustrating, exasperating and tiring than a willful, headstrong, intense, oppositional, contrary, defiant, easily frustrated 3 1/2 year old girl who wants Mommy's attention but also wants to be completely independent? Well, a generous touch of autism really brings the party. It's hard to separate her personality from the autism sometimes but from what I can tell, and knowing what I know about her genetics, this would have been a toughie anyway--without the autism.

She tends to do things to the extreme, which I think is part HER and part autism. For instance, her chronic, persistent, oppositional, contrary, defiance. When put on a typically developing child at this age, I doubt many of them would have the endurance to maintain such a nasty attitude during nearly every waking moment. I cannot say anything without a major issue over what I have said. And the issue usually relates to her communication disorders.

Examples:
I said: "Go ahead."
She said: "NO!!!!! No go head! Go HAIR!!!!!!!"

(That's the language disorder talking. She has a very difficult time understanding what I say. Sometimes she just hears the word wrong, like lobster/monster, or sometimes it's because the word or phrase is a homophone or a figure of speech. Communication with her has to be extremely concrete.)

I said: "It's going to snow tomorrow."
She said: "NO!!!! No 'marrow! NEXT TIME!!!!"

And then if I forget and call her by her real name, that's when we really have trouble. She FLIPS out if she hears her real name. She assumes names for herself throughout the day, usually based on something she has seen or played with or a person at school. It's really embarrassing when she insists to be called "Eric" or "Domonick," after boys at school. And even more embarrassing when she goes BERZERK on classmates and the parents of classmates when they greet her and use her name. The parents look at me like it's all my fault, and the poor little kids don't understand and are afraid of this shrieking, wild monster who they thought was their friend. She takes the name thing so seriously that she has night terrors--wakes up screaming about not wanting to be called by her name, and screaming out other names she wants to be called. I try to avoid using her name or aliases at all, so I don't encourage the behavior, yet I get in trouble when I speak to her as "you" in conversation. A perfectly pleasant (and rare) conversational exchange can be ruined in a split second once she decides that "you" means her name. Then it's just a torrent of "No!"s and screaming, and then I just walk away. That's all I can do. It's sad and awful that I cringe every time I speak to her, wondering if what I just said will set her off. I dread every day, honestly. But I just keep praying for patience and wisdom in dealing with her.

Strangely, a friend who also has a special needs child told me, "it's all about how you parent her." Though she herself should know each kid on the spectrum is different and I was surprised to hear such a thing from her. That is a parents' worst fear, to be judged on their parenting! And parents of autistic kids are especially sensitive to this. Some special needs children just can't be "parented" in the way she means. In our situation, however, what I CAN do is work very hard to make sure we find all the services and therapies and experiences she needs to progress and succeed. Parents of typically developing children need to focus on "parenting" but I'd say that parents of many types special needs children should focus on "advocating."

This being Autism Awareness month, I think of parents of children who are lower functioning and am grateful we have the skills that we do.

Those damn BoohBahs

Unfortunately for me, the library had a copy of a dvd about these frightful creatures called the BoohBahs, and I was sick so wasn't paying attention to what we were checking out, just trying to exit the library before my next coughing/gagging sinus nasal drip episode. Meet the BoohBahs.


They are colorful, and sparkly, and rainbow-y, and they dance techno, and they fly around to different places saying, "Boohbah" and encouraging children they meet to jump up and down and say, "Boohbah" with them. It is apparently a UK show for preschoolers, and I just have to wonder about the education quality in the UK now. But seriously, you know it's really a show for afterschool potheads, or old hippies living in a school bus type of potheads. I felt stoned just watching it. I'll be damned if my kid doesn't love it though, which totally figures, since she is hellbent to destroy me.

But no matter how disturbing these Boohbahs, I was interested to see how my kid is observant of details. She had only watched the dvd a couple times and we were "discussing" the BoohBahs when she was taking a bath. I asked her how many BoohBahs there are, and she said 5. I wasn't actually sure what the right answer was, because I hadn't noticed how many there were. Then I asked her what colors they are. She named 5 colors. I asked her if there was a green one. She laughed and said, "no green one" like I had just said the dumbest thing ever. How could I not know there are no green BoohBahs??? After bath I looked at the dvd case and sure enough, there are 5 Boohbahs and none of them are green.

The echolalia IS the eye contact

I've begun watching the video glossary on the Autism Speaks website--and I'm totally blown away at all the signs my daughter had even at 12 months. One video shows a typical baby at 12 months playing with something and often looking up to make happy eye contact with parent, smiling, as a way to share the activity. The contrasting video shows another child doing the same thing, but only engaging with toy, never seeking eye contact, and frustration when needing help with toy, but not seeking help from parent other than by vocal distress. That's my kid. Just seeing the baby in the video look up and smile at the parent/researcher struck me as so telling, since I have never seen my daughter do anything like this. Also, I have no other children, so no good comparisons. I knew from day two of her life that there was something different and more difficult about our experience, but I didn't know what it might be until much later.

As I was considering the issue of eye contact, something else struck me: the echolalia IS the eye contact. Her frantic insistence that I often repeat things she says IS the eye contact and sharing. That's how she maintains connection with me and reassurance that I am SEEING her.

Lightbulb moment.

Day in the Life--of a lazy, welfare mom

...if I could only figure out where to get the welfare, and where to find time to be lazy!

6:30am - "Want spaghetti, Mommy!"

6:35am - Watching water boil for spaghetti, because I would make her a steak at 6:30am if I thought she would eat it, no matter that I've never cooked steak before because I'm vegetarian

8:50am - "No! I do it!" Just as I thought we might be on time to school just one time...

9:00am - Zula (which is our longest running alias to date) finally has her shoes on correctly so we can get out the door for school, which starts at 9:00am

10:00am - In line at post office mailing customer order from my home business, as well as treats and letter to sponsored child in Ethiopia, and trying to decide whether to hit the bank (no, not like that) or grocery store or gas station next, and in what order to best conserve travel time and gas before 11:45 preschool pick up--and all these types of errands must be done during preschool hours because banks, stores, or anywhere with lines... or anywhere I may need to pause or think or speak are not suitable environments for Zula

10:02am - Receive voicemail from school regarding "gak" and "don't worry, it will probably come out of her hair okay"

10:10am - I return the call to teacher's cell, but no answer. Decide not to pursue: no blood reported, and she must be conscious since I could hear her in the background shrieking, "NOOOOOO!!! ZULA! My name is ZULA!!!" Because she heard the teacher use her real, given name over the phone in the message to me.

11:44am - Accomplished all the errands. Waiting outside classroom door, wondering what I'm in for, what will emerge, since almost no day goes by without incident (yesterday she came out shrieking because teacher was talking about how they will all attend St. Pat's parade next week, and Zula doesn't know what 1 minute or 1 day or 1 week means, and wanted to go NOW! The day before that she came out shrieking because she had just pooped her pants. And the day before that she ran out covered in blue paint and wearing a princess dress).

11:45am - The classroom door opens and Zula runs out with a big pile of green goo on her head. Not just a little streak or two, but a huge SPLAT. It appeared to be wet and slimy but was actually quite dry to the touch, nicely and firmly cemented to her head. She did not seem to mind at all.

12:00pm - Supposed to be home for lunch before 1pm music appreciation hour with Miss Mindi (a local music teacher I trade services with: I'm making her website, helping with marketing communications and such--in exchange for her taking my kid off my hands for one hour per week--I mean, enriching her development with music and dance ) but instead we are hunched over faucet, soaking head with warm water, and combing, combing, combing, etc.

12:30pm - Pleased with "gak" removal process. Not bad, except for a greasy residue. Now for some leftover breakfast spaghetti, and cheese puffs

12:45pm - After another painstaking shoe ordeal, then run--and I mean literally RUN, because Zula does not ever just walk; everything is full speed, with boundless, reckless energy--out to the car and slide as if to home plate right through the mud in the driveway...

12:50pm - Bound into car seat, and the wet wipes getting a work out cleaning mud from pants and shoes

1:00ish pm - Leave Zula with Miss Mindi, after explaining the latest name is Zula. Last week it was "Zula Cat in the Hat."

1:05pm - On the phone with health provider arguing over bill--another thing I can't do in Zula's presence: be on the phone!

1:15pm - Post office again to get garbage bill out

1:20pm - "What the hell do I do now???" 40 minutes to spare. No more errands. No money to shop.

1:30pm - At the library. Looking for something interesting in the dvd section. (I don't have patience or  humor for much tv. ) End up with film documenting lives of 4 families with autistic child. On the way out the door I remember I've been interested in learning more about the Reverend Billy Graham lately, so quick u-turn back to the catalog, bring up search results, locate book in record time, self-checkout, out the door..

2:00pm - Pick up Zula without incident.

2:05pm - Break the news to Zula that we have to "go see the doctor really quick."

"The doctor wants to play with you." Zula says, meaning "me" but she always mixes up the pronouns. She thinks the doctor wants to play with her. Unfortunately this is not the case. It will be a nurse. A mean ol' Nurse Ratched, stabbing her with a flu booster.

2:35pm - Check in at nurse treatment at the clinic

3:00pm - Still waiting. There are no toys or kid books in sight. There is a Smithsonian magazine on a kiddie table. Zula has reluctantly been perusing it, only to be completely fascinated by one pictorial. To my horror, it was a pictorial of the following: space shuttle Challenger explosion, assassination of JFK, and 9/11 towers burning. No matter what distraction I offered she kept insisting to know, "What's that?"

"Um, smoke and fire."

"Well, it looks like those people are riding in a car..."

"And that's, uh, more smoke and fire."

My efforts like, "What about this nice green lizard? Oh, look, he's a gecko. He wants to sell you car insurance," were all ignored.

She was fixated on the smoke, announcing, "Smoke's getting the people! Smoke's getting the people!" And making her stuffed kitty run from the magazine pictorial screaming, "AAAAAAAAA! Smoke's getting the people!"

I didn't even need to look around. It was a crowded waiting area. And I know what "the looks" look like by now.

3:10pm - Still not looking at "the looks" as Zula and her kitty have finally gotten bored play-acting with the pictorial of some of the most horrific events in modern times, and are now marching circles around everything in sight, spinning and falling down, and displaying downward dog yoga positions to the rest of the waiting room.

3:15pm - Thank God, it was our turn.

3:20pm - Without any regard to Zula's age, autism, or just general decency, nurse Ratched did a drive-by with that syringe. In and out. Over and done. Wham bam. Get out. OH, and without regard to Zula's freakish strength for such a slight little thing. I was supposed to hold her in the hog tie position, but even bound, her head is a weapon. Clocked me right in the cheek. Again. Same spot where she always seems to get me so that I look like a battered wife.

3:45pm - HOME.

3:45pm - 5:30pm - Snacks for dinner (since we already had dinner twice today, technically), jigsaw puzzles (her latest craze), play "gonna get you" (race around the house to burn off whatever's left), and then bathtime, bedtime rituals, etc.

7pm - Zula in bed. ASLEEP almost instantly.

7:15pm - Happy dance. I put away another day.

"Mommy, where's 'Aw-go'?"

Most other parents of a 3 1/2 year old are tortured by the 20 billion questions phase. "Cat in the hat" doesn't do that, which is apparently a result of her language disorder, which is part of the autism. "Cat in the hat" doesn't ask questions at all, just makes statements, observations, and narrates her experience in her immediate environment--that is, when she's not stuck like a broken record, repeating one word or phrase for days on end, ad nauseum. So it figures that when she finally asks a very clear and coherent question, it's not something simple like, "Why is the sky blue?" or "Where do babies come from?" No. It's, "Mommy, where'd 'Aw-go' go?" Over and over and over...

I try to explain about doggy heaven, and how 'Aw-go' got sick and had to go live with God, in doggy heaven, so she could feel better, because God made doggies, so God will take care of 'Aw-go' now. And no wonder that despite all of my feeble and confusing explanations, she doesn't understand, and wants me to "go find 'Aw-go.'" I don't blame her, because I don't really understand where 'Aw-go' went either. But I do believe that "the Lord is my shepherd, I shall not want," and that "the things of earth will grow strangely dim," so we won't want for anything in the new kingdom, even if our earthly pets aren't there...yet, I also believe that God would enjoy seeing us reunited with our faithful pets, in the same way that I'd love to watch "Cat in the hat" reunited with 'Aw-go,' if it was under my power to do so.

Breaking news, People!

Never been so happy to see poop in all my life: The Butterfly pooped in the training potty for the first time! Figures that she does it all backward, because she still won't pee in the potty and I have heard that #2 is always the toughy. Of course now I have to scour the stores tomorrow for a "dolphin" umbrella--and has to be a blue one! No matter that she's a butterfly at the moment, and happens to already have a lady bug rain coat and boots set...? Well, anyway, Kidorable seems to be the people to see about a dolphin umbrella.

Autism and vaccines

Some stellar intellects on news comment boards are hollering about the retracted autism study that linked autism to vaccines and caused a sharp decline in vaccinations. These stellar intellects think that without the vaccine link, that autism somehow doesn't exist. That it's a myth of the imagination. That we just need to discipline our kids and they will "get over it." A bunk study about autism and vaccines doesn't change the existence of autism, people. If you remove the probable cause of any disease or disorder, it doesn't make the disease or disorder go away. Removing the reason why a limb was amputated doesn't make the limb grow back. Removing the suspected cause of why the autistic brain pathways are circuited differently (which is why the autistic person perceives the world differently) doesn't make those pathways straight, or however they are supposed to be.

I am very interested in the 30 years of piecemeal research linking inflammation of the central nervous system and autism. This indicates that autism could be an autoimmune disorder, which I find interesting since my mother has MS and her mother had RA. Autoimmune disorders run in my family.

Bottom line, no one yet knows what causes autism. Finding the cause is instrumental in the treatment of autism. Without knowing the cause, finding the right therapy for each individual case is guesswork, since each case of autism is different.