The Third Shoe Drops

Some of you wondered about the third coincidence?

I wandered over to Kristen Spina's beautiful blog to wade around and soak up wisdom. She had written several blogs for me that I'd been thinking of but now I know they're done and she said it better than I could've... about sleep interruptions, about realizing that you expect your child to "grow out of it," about the realization that this is not a phase... wow, so much like what we're experiencing in my house, that would be enough of a coincidence. And I see she's from LA, and will be here this summer, and I think maybe I can find her the tutor she says she needs, and that would be coincidence enough. But then I find she wrote about Rooster Calls. I don't know what to even make of it. All I know is that I've had, my whole life, collections of writers I admire, and I've imagined their lives, imagined meeting them, but none of them ever knew it. Now I have a writer I admire who actually made me feel welcome in the community. So the third coincidence actually has three coincidences. What a coincidence!

Today's Bad Daze

He has good days, he has bad days.
The music teacher says, "He brought such energy to class today, your boy."
He walks on the play yard and a little girl, but big to him, calls out his name, runs to him with a welcome smile.
I peek through the one-way mirror and he's doing it -- whatever -- the same as everyone else.
He goes to the doctor and says, "Take out your otoscope! You need to look in my ears."
I give him two fig cookies, and he hands one to his sister.
"Good night mommy," he says, headed off to sleep, a soft kiss from a lizardy boy breathing deeply, cradled on daddy's shoulder.
He has bad days, he has good days.
The library teacher says, "Today I had no choice to send him back to class."
He walks onto the play yard and two girls from his class shriek, run, hide.
Within moments after I arrive at his classroom window, I must look away, I must walk away, I must.
The doctor says, "I don't know... there are tests we could run..."
Even desperate food bribes fail to keep our commute sane or safe, as he Houdinis out of his car seat to pinch, poke, spray his sister and I with spit.
We quickly stir the melatonin into some milk - diets be damned - and wonder when the nightmares will subside.

HELP! Request for Information

Everyone who leaves me comments seems much smarter than me. So forgive me, but I have some questions. Feel free to ignore me and go, "Yeah? Well, I have questions TOO, buddy. YOU go solve your own mess. I read blogs for inspiration, NOT QUIZZES." Or, better yet, tell me some answers:
- Anyone out there well versed in LAUSD? (ie, anyone out there want to help me decipher the choices they're giving me?)
- So is soy ON or OFF the DAN! diet? (not that I'm convinced we have the stamina to even try the DAN diet, but it's not off the table, so to speak)
- Does anyone else's kid make up huge, long, creative, dramatic NEW stories every day? ("Suddenly, the rocket ship flies up, up, up into the sky...Boom! It crashed down on daddy's head. But daddy did not cry.") I'd pay you good money to explain to me how these epic preschool tales fit into the whole picture of a boy with serious language delays and deficits. The school psychologist just keeps saying, "atypical, atypical, atypical..."
- Can you give melatonin at nap time AND bed time, or just bed time?
- How do you find a decent pediatrician? Our asked the rooster to hug his sister, and when he did, he said, "See, he's not autistic." Now that is what I call sophisticated analysis.
- Speaking of questions, we go to the developmental pediatrician next week. It's a fortune (to us) for the initial evaluation ($2500!!!!) and we only managed to get in through a favor... so I want to be sure I ask good questions and get my money's worth! If anyone wants to suggest the best questions to ask... I'm all ears.

PLEASE forgive the neediness of the list. I'm just amazed by how much I don't know, and I do believe knowledge is power.

Coincidences Come in Threes

You almost couldn't make this stuff up and get away with it, but because it's true I have to tell you.

First of all, I went to a conference for work yesterday. It was exactly two work days after our IEP, so I was behind with my responsibilities (the IEP and related travel took half a day) so I considered bailing out on the conference to catch up on the avalance that is my desk, but then I figured a day of immersive learning would take my mind off things, especially the dark insinuations of that district psychologist you're probably sick or reading about. Right? So I'm in a software seminar with a professional development focus, and I'm loving not just the content, which is right up my alley, but the presenter, whose Southern accent comes from the same place I do. Suddenly, she sits down and says she's sharing her seminar time with a group that wants to showcase new IEP sofware, and I have been selected (by a pink sticker on my computer) to come up for a ROLE PLAY. I am told to do the IEP of a child who is having trouble getting along with classmates and who has oppositional behavior. I have been assigned the role of the school psychologist. The woman pretending to be the parent acts defensive. The man assigned to be school principal makes jokes. Everyone groans about how much IEPs suck. I am the epitome of the "affective filter" I learned about in education -- sometimes students can't really hear the message of the lesson when the emotional stakes feel to high to them for personal reasons that might be unknown to the teacher.

I don't know about you, but the whole thing struck me as a weird coincidence. Not a good one.

But to balance out the scales, it just so happens that our neighbors directly across and one house down have a little boy, Sweet D, who has a spectrum diagnosis. We found this out not long after we moved in about six months ago, and that was coincidence enough at the time (though we were as yet undiagnosed), but just the other day we found out that Sweet D, who gets OT and speech at home, and who also happens to be just four weeks younger than the rooster, needs a partner for his floor time and speech therapies. His mom offered, since the district covers the price for them anyway, for the rooster to come try out a little free therapy! And, it just so happens that the rooster has no school this Friday (parent conference day), so my husband was planning to stay home with him anyway -- the very day that Sweet D has floor time with the therapist. A plan is hatched. I think even the rooster will be thrilled -- Sweet D has a double swing set and everything.

Weird stuff and gray hairs usually come to me in threes. So I am wondering: what coincidence does tomorrow have in store for me?

Good Night Gorilla

Last night, I read the rooster and Peaches a sweet little book before bed called Goodnight Gorilla. Really, there isn't much reading to it, since it's a book of very few words. The pictures tell the real story.

Since things were going well with them both on my lap happily turning pages, and since I'd been reading up about all the cognitive and inferential difficulties the rooster might have with his still murky issues, I decided to let the language arts teacher in me out of her cave and I doled out lots of reading comprehension questions to the preschool set. And you know what? They nailed them. Peaches got the points you might expect for a gal not yet two, and the rooster interpreted characters' feelings based on facial expression, made predictions, answered "why" questions, the whole nine yards. Last night, when we read together, we were in "It'll be okay land." It feels like it might as well have been a thousand years and a million miles ago now.

Tonight, no bedtime story from this mama, who lost her mind before we even finished the 35 minute commute, who, by the time her little tantrum throwing darling finished spitting in her face, was screaming profanity like a very, very, very bad mother - the kind who is IN Hansel and Gretel, not the kind who does the readaloud in the arm chair with milk and cookies.

How bad was today? Suffice it to say I just spent the last hour on Amazon loading my cart with books that are NOT fairy tales -- every title related to the spectrum that I could get my newly IEPed hands on. And the ones that seemed to focus on behavior? I considered next day Fed Ex for those.

I have to admit something that scares me as I read blogs about other kids on the spectrum: the absence of the anger, aggression, violence, dislikability that I see, but haven't described until now, in the rooster. I am left to wonder/ponder, does the rooster have a mental illness, something darker and more devastating than being on the spectrum? Or do I simply lack the strength, patience, and understanding of any good blogger, let alone any good mother? If I were half of who I want to be, I'd be able to manage his outbursts, protect Peaches from them, ease the pain I know they must cause him too, understand them, reduce them, keep them to myself. But I can barely endure them. Sometimes I rage too. And then after I feel the guilt. It's so ugly, this process, this side of me and us. I can get very dark here, very doomed, very The Lorax. This is all scary stuff to admit, and I'm dreading the comments I'll get, but I've got some kind of drive to tell this story right now, and I almost can't seem to stop even if I want to.

So badly had I wanted to blog about the triumph of last night's "reading" before the waves crashed upon it and washed it out to sea. Instead the context I have to offer is a contrast, a riches to rags failure. I let my husband tuck in the rooster tonight without so much as a kiss from me, and now that he's in bed I'm kicking myself, but yet I'm not about to risk waking him up and letting him take that job off my hands.

Here is to better nights. Here's hoping for more stories with happy endings. Here's hoping I can keep myself out of the oven. Good night, Gorilla.

DURST

So I want to help you appreciate "durst." You'll have to come with me into the moment, about 3 or 4 months ago.



Okay, we're in the surgical center where the rooster is about to have eye surgery less than a year after having surgery for tonsils, adenoids and tubes that basically traumatized all of us and did not provide him much (if any?) relief from his medical and sleep issues. We're worried. We're second guessing the decision to do this. We're exhausted. It's 6:30 in the morning. Peaches is a cranky toddler upset at the early wakeup call. Even though I can HEAR just fine, I find it somehow nearly impossible to listen to anything except the scratchy static of fear in my head.



I keep reminding ever nurse, doctor, hospital worker I can that our rooster has a lot of respiratory issues -- he needs special care while he's "under." I keep smiling at him and doing an impersonation of a calm, sure mommy. I am not breathing enough. Time is scrambled.



They give the rooster "happy juice" and oh how much I would like my own cup. (How very gladly would I have the whole shebang in his stead.) A beautiful doctor, Dr. R, with whom I've spoken on the phone several times comes to introduce himself. He is the anesthesiologist, and I've been told he's one of the three best in the country, but that seems like such an odd thing to calculate, and makes me question the whereabouts of the other two, and if maybe they could come along, too. The eye surgeon himself wrote the book on this procedure, and I'm thrilled to know it, but I believe that Dr. R holds the rooster's safety really in his hands. I wish I had baked something for him. I tell him we hear he's the best, that we are counting on this. He hears what I'm not saying as clearly as what I am, "You better take care of my baby. You must treat him as your own son." He finds ways to tell us that he will with his soulful smile and a voice like a grandma's quilt. In front of him, I weep just a bit, but not so much that the rooster sees it. I must guard the rooster and keep him confident. I must impress importance upon his doctors.



The juice kicks in! I am holding the rooster, because he is drunk and slurring now. When did he get so heavy? Dr. R says it's time to go, and he lifts the rooster from my arms. I am not in a good place.



"Durst!" Comic relief, courtesy of the rooster! He cracks himself up, leans toward Dr. R to practically nose kiss. "DURST!" The doctor laughs. "Durst?" he asks. The rooster cackles, "Dursty, dursty dursty, dursty durst!" Drunk. And they are gone, for one very long hour.



I didn't expect the rooster to remember surgery, but he had nightmares for a while afterward, and once said to me, "Dr. W sticks a needle in my eye mommy!" That was hard. Guilt is my nightmare. But clearly the rooster remembered the happy juice, too, and he uses "Durst" all the time. None of us know what it means to him, exactly, but his sister picked it up and uses it sometimes too.



Our rooster has a lot of mystery about him, and I recognize that I'm being told now that much of this mystery lies in a place of struggle, difference, dysfunction. Okay. And I know his language separates him from us in a way that makes me feel like's he's trapped where I can't always access. But whatever his struggles, I see durst as not such a bad coping mechanism, really.



Couldn't we all use some happy juice and a durst now and then?

Amelia Bedelia

AMENDED: BELOW, you'll read how I had an epiphany about Amelia Bedelia. I didn't by any means think it was an original thought -- I had a hunch that if I searched on Google, I'd find some funny but possibly obscure articles mentioning just the same thing I thought of, but it was nowhere near so subtle... practically ALL the kajillion hits diagnosed Amelia's ASD! So I'm late and learning as usual...patience, I beg of you...

I've had many people ask how yesterday's IEP meeting went, and it's all too big to process let alone describe just yet. Maybe I can compare it like being a soldier returning home, "So how did that war go?" Well, there were a lot of battles...

But here is the aha moment I had: I am thinking Amelia Bedelia must have been on the spectrum, and I never knew it. You remember Amelia Bedelia from your childhood; she was the little housekeeper who diligently followed your directions. You said dust the furniture, so she covered them with dust. I swear, I am going to put my Google skills to work when I finish this post to see if other parents realized that Amelia was on the spectrum after having their spectrum kid described to them by a speech language specialist.

So the speech person at our IEP seemed to adore and pity our rooster in a way that melted and terrified me. She gently told me that, because he was so charming, and she was rooting so hard for him to succeed, that she tried about nine ways to get him to successfully answer the receptive language part of her assessment. He wouldn't or couldn't but definitely didn't, and had no real interest in trying except for his desire to please the nice lady. But he was in an unfamiliar room filled with books and toys, and he had his own agenda, too. She asked him to keep his eye on the puzzle, and this is where he turned all Amelia, didn't you guess. Yep, he bent down, and he put his face -- no, his eye -- on the puzzle. For a minute. Then he was off on more tangents.

Oh, I know all about the tangents. I know about the made up words ("durst" is the most interesting, and I promise to post about durst later) and I know that despite having an age-appropriate vocabulary, it is an enormous struggle for the rooster to answer questions on topic, or have any kind of back and forth dialogue. But surely I should have noticed this literal aspect more. I guess it's true that when you are too close to something, you can lose your perspective.

This language person was trying to explain that our rooster has a significant -- in fact, I think she said huge -- gap between his expressive and receptive language scores, and that it's hard to tease all that apart from his distractability to know what is going on, but it definitely, clearly does not bode well for his auditory processing. Of course, they are not allowed to "diagnose" auditory processing. But this team really seemed skilled at diagnosing lots of things with the caveat that, "but we are not allowed to DIAGNOSE that, so we just use it as a DESCRIPTOR." Among things they liked to dangle at us, as they amitted having no clue exactly what to make of his unusual language, they threw in DESCRIPTORS such as aphasia-like, "sort of like a person with a brain lesion," and -- can you hear my fingers wince on the keyboard -- "schizophrenia-like." This last business was not from the language expert but from the school psychologist, who is no only not on my holiday card list, but looks like she and the grinch have the same hair dresser. Anyway, forget her. It was the speech person who seemed to best get the rooster and all his issues. She described him so well that there is no way her evaluation won't be useful as we schlep from -ist to -ist armed with the epic that is the rooster's file of documentation.

I felt a physical sensation of pain everytime she pityingly gushed, "He was clearly TRYING. Trying SO HARD. But his pragmatics just ARE NOT THERE."

Who would have thought I would have a child with, of all things, trouble expressing himself? (Self expression might be my only strength in life! And his dad writes for a living!) Most people see his BLONDE hair, take note of the THICKTHICK dark auburn tresses that make my husband and I look like we could be siblings if we weren't spouses, and say, "Where did you get this blonde boy?!" I don't know why he's blonde or why he has hundreds of vocabulary words that he struggles to put together in any meaningful way, but I am going to put every word in my dictionary to work for our family to seek out help for him. I will ask and listen and read and learn, and I will talk and explain and beg if I have to. And I don't mean I'll do this with just the experts or with the doctors and ists or with the blogosphere -- I'll do all this with my boy as well. He really truly does have a lot to tell me. I just have to keep my on him, so to speak. DURST!