A Land Flowing with Milk and Honey

I've been dreaming about the job market, about shopping myself around and finally landing that tenure-track job at the PERFECT place. In the shower, daydreaming about it. At my desk, daydreaming about it. At the park with the boys, daydreaming about it.

But my daydreams aren't rooted in comps doldrums, as you might think. No, they're rooted in the Promised Lands I've been hearing so much about, these magical places that actually have manna from heaven everywhere you step. STs and OTs and SI therapists and developmental specialists everywhere you go.

Autism Heaven on Earth.

Lately the Holy Land that has most caught my attention is Dallas/Ft. Worth. There are maybe three SI therapists in all of southern Arizona. But just one office in the Dallas area has double that. Wow . . . can you imagine making an appointment without sitting on a waiting list for 6-9 months? I can almost taste the manna!

And so while my mind should be focused on other things, I find it drifting to all the professional contacts I have in DFW, all the job opportunities there . . .

Don't worry. Next week I'll hear about all the amazing specialists in Atlanta or some other place and be daydreaming anew.

Dx soup

Here's the funny thing about ASDs--no matter how much you know, there's always, always so much more to know.

June has been "drag Noah to the doctor" month. Oh yes, he loves me for this. OT evals and speech groups and developmental ped appointments. Yay fun.

Today we went back for a follow up with the developmental ped and she gave Noah four dx's.

Sensory Integration Disorder, which I already knew.

Inhalant Allergies, which I could have told you any of the millions of times he's played with his cat and then turned into an allergy ball.

The other two were new, though.

She diagnosed him with Autism Spectrum Disorder. Yes, of course I knew he was on the spectrum, but the interesting twist here is that she DIDN'T want to give him an Asperger's diagnosis (the label he's had for two years). While he does have some of the defining characteristics of Asperger's, there's other stuff that is beyond Asperger's. This distinction she's made is super cool: it means Noah can potentially get services now that he's classified with autism. Phew.

Last but not least, Developmental Dyspraxia. This is the one I had to Google. Basically, it relates to both his motor planning issues and his language difficulties. He has difficulty planning a sequence of coordinated movements and executing plans.

The ped gave me pages of new homework assignments. I need to schedule appointments with speech specialists and allergy specialists and endocrinologists. I need to get computer-based math programs. I need to buy chewlery. I need to record descriptions of Noah's bowel movements in a stool log. I need to start him on a bunch of new suppliments. The list goes on and on. Good thing I don't have a new job starting or comps to prepare for or a fall course to plan or anything like that.

I may have a bunch of new things to learn and do, but I am excited for Noah. Answers, even partial ones, are wonderful things.

Apparently, I have a dangerous pelvis

On Thursday I was finally able to take Noah in for an OT/SI evaluation with the Super Amazing SI Therapist who's been working with Nick for a few weeks now. Before running Noah through all her tests, she asked me some premilinary questions about my concerns regarding Noah. I told her about how he can't moderate himself, getting overly amped up in sensory-stimulating environments, told her about how his sense of hearing and sight and touch are hyper-sensitive, but how he can't smell at all.

When she heard that, she stopped me. "What was his birth like?" she asked.

Noah was born nearly two weeks late. I was having contractions all that time, enough to keep me from sleeping but not enough to get the child born. The OB decided we needed to induce. And so we got to the hospital at an ungodly early hour (I think we were supposed to be there at 5 AM) and waited. And waited. And waited. Labor and Delivery didn't have any beds so they eventually sent us home. By afternoon they called to say they had a bed and we went back. Pitocin was started. Contractions increased in intensity, but I was too scared of the needle to get an epidural (stupidity, as I later learned). I still wasn't progressing enough so they broke my water for me. Late into the night it was finally time to push. I pushed and pushed and pushed for two hours. I was so exhausted that I kept falling asleep--W or a nurse would wake me up to push every time contractions showed up on the monitoring screen so that I could push again.

I may be small, but I'm TOUGH. I pushed the heck out of that child.

Midnight approached and my OB wandered in and slumped into a tired pile on a chair in the corner. He told me my baby was transverse; he'd hoped that pushing would straighten the baby out, make it go the right direction, but it hadn't worked yet. I could keep pushing, which would likely lead to vacuum extraction or the use of forecepts, or I could have a c-section.

And so I went off to the OR, got the spinal (a needle prick that I barely noticed), had a c-section and a healthy baby boy.

Noah's head was completely smooshed from all that pushing. It looked awful. The doctors and nurses laughed--it was FINE and would reshape itself. Noah's APGARS were good so there was nothing to worry about. He was FINE.

The Super Amazing SI Therapist said that the area where Noah's skull got smooshed by my pelvis is right where the sensory processing area of the brain is. She thinks that some nerve or neuropathway got pinched by the skull bone, leading to his sensory processing difficulties.

In short, my pelvis broke my baby's ability to smell.

I'm still sorting out how I feel about this. Part of me is angry at the doctors and nurses who reassured me that Noah was FINE; if I'd only known that my labor experience could have led to difficulties for Noah, I might have been able to watch for signs, get him help sooner. Part of me is sad that doing the most loving and natural thing for my child--trying to bring him into the world--wound up hurting him. Part of me is frustrated that it took eight years for a doctor to tell me any of this.

There was a lot more to the appointment, and I'll probably blog about it more later.

Mean Sarah McLachlan Makes a Boy Cry

Noah was playing with some PlayDo when a commercial nearly identical to this one (but for the US and not BC) came on.

Noah watched, transfixed. When the commercial ended, he came over to me. "Mom, I want to go to the pound to get a dog," he said as emotion threatened to overtake him. "There's a dog that needs a home."

I wrapped my arms around my boy, who was on the verge of sobbing. I wanted to run out right then and get him a dog. My sweet tender-hearted boy!

And if it weren't for the fact that Nick pulls animals' tails--and would surely get bitten by a dog for doing so--I'd be at the pound right now with Noah.

Maybe I really should get one of those autism dogs . . .

New under the heading of "you've got to be f-ing kidding me"

Mkay, apparently the Bible has prophesy about autism. Lots of it. Wait, you say you didn't see anything mentioned about autism the last time you read the Bible? Why, that's because you were looking at the words themselves, silly. You needed to take away the spaces between all the words, organize the letters into columns, and then run a computer program to find the Bible's hidden messages. Gosh, didn't you know that?

Since you're so silly to have not figured this code out yourselves, you can watch the enthralling video. Or you can visit this website. 

Now, see, the lovely part of this code is that you can find whatever you want to find with it. Like the matrix from Matthew 2:22-2 Peter 2:20. 

They found the word "autism" vertically. Then they found the word "pollution" horizonally. Therefore, of course, pollution must cause autism. But, wait, I saw the word "father" in the first line of the passage. So I say we throw out the pollution theory and just blame bad fathers for autism. Hey, Michael Savage said it, and now the Bible says it, so it must be true.

Lord, I need to go bang my head on a wall. 

Spidey Heart

The boys and I were on the way to Noah's social skills group on campus (only on the waiting list for a year--SOO excited for the first session finally). Noah noticed various things has he gazed out the car window. First it was a "lost cat" sign. Lost pet signs are rather disturbing to him; whenever he sees a cat or dog wandering around the city, he wants me to stop and get the strange animal in the car so that we can return the lost pet to its home. 

We continued along and then Noah noticed a cemetery. There were a couple of diggers--backhoe loaders? Noah would know the exact term--and he wanted to know what they were doing in the graveyard. I explained that they were digging a new grave.

We continued along and then Noah announced: "I'm only afraid of two things."

My interest piqued. Before he always said he was only afraid of one thing (the dark); I was curious to hear about thing two.

"I'm only afraid of two things: the dark and death."

Wow. Much weightier than I had expected. 

As I drove, we talked about death. He told me how it was something that he worried about all the time. I gently listened. I said some comforting things, but I also believe he deserves the respect of my honesty, so I didn't paint pie-in-the-sky visions of some heaven with candy-lined streets or anything like that. 

Then the conversation quieted, and we continued along, Noah quietly watching the world outside his window. 

I heard him sniffling. Once, twice, again. "Noah, do you have the sniffles?" I asked.

"No," he said as I turned onto Mountain Avenue, "I'm sad. I miss Nutmeg."

He was crying for the cat I'd had for sixteen years, the cat that he'd known since birth, the cat that passed away in November.

I wanted to cry, too.

Instead I reached behind my seat and pet his leg as I drove, told him I missed her too and that I knew it hurt.

Soon we'd pulled into the parking lot at the speech clinic and took my son in my arms as he cried for his cat. I held him for as long as he needed.

When Noah tells people about his Asperger's, he says he has "Spidey Senses." It's true. He has a heightened sense of awareness when it comes to sensory details. Sounds are louder, colors are brighter. But I also think he has spidey senses of the heart, feeling things more deeply than the average person. It's a beautiful, sometimes sorrowful, thing.

Today, guest starring in the role of angry mom, is Denise

I ended the day sitting on the back porch, sipping a margarita, watching the wanna-be monsoon clouds drift across the sky as the trees danced in the wind. 

It was tranquil. So different from my day.

Last week Kristina Chew blogged about this article that shared a scientific study's findings that mothers of kids with autism produce much lower levels of the stress hormone cortisol than typical mothers. My unscientific take is that if our bodies responded to the sorts of things that would trigger stress in a typical person that we'd be such ginormous stress balls that we'd drop dead, so it's a self-preservation thing. 

Ya, well, pushed to the limit, those stress levels can be boosted again. Oh yeah.

Today it started with all the plans I had for Nick's schooling for next year crumbling before me. At his last IEP meeting, I arranged for him to attend a different school, one with a classroom designed specifically for kids with autism. I was so excited. We switched speech therapists to get Nick ready for using the PECS system more consistently so that he'd be well-prepared for the way the class functioned. It was going to be awesome.

But then someone from the district's transportation office called me; she was setting up Nick's transportation for next school year. She had the pick up and drop off locations right . . . she had the school wrong, though. I told her the name of the school that he was supposed to be attending.

And she told me that the preschool on that campus had been closed. 

What followed was me calling four different people at the district's special ed department, trying to get answers. I mean, how can you shut down a preschool program and not inform the parents of the children who are supposed to attend that program? If it hadn't been for that conversation with transportation, would I have showed up to drop Nick off at the first day of school just to find locked doors?

I was pissed.

By the end of the morning, this is what I had learned: thanks to the lovely legislators who think kids with disabilities are a wonderful thing to swing their budget cut ax at, the preschool program was shut down, and the classes have been redistributed to various elementary schools throughout the district. The autism class, gone. Completely. Fabulous.

But here's some good news. I was able to get Nick into a class a Noah's school. And the teacher from the now-dead autism class is the teacher for this class. For once Nick will have a teacher who actually knows a bit about autism, so that's a good thing.

But dude, really, how could they NOT tell the parents about all this? Really.

My adrenaline was certainly pumping from the experience; I was ready to punch anyone who even sneezed at my kids. Yeah, you gotta watch this petite thing when the adrenaline is pumping--I'm dangerous (some of you know this!).

Eventually I calmed down. Fortunately my obligation at campus for the day was reduced; I only had to be there from 3-5 instead of 1-5. I've been using respite to help me get through my June obligations. It's taken some finagling. Because I couldn't find one person who could cover all the time, I've had two people in overlapping shifts. 

Thank goodness I only had to be there from 3-5. Thank goodness, or Nick would've been stranded today.

You see, the first person stays until two, then leaves to pick up another child from school. The second person comes at two.

Yeah, she didn't come today. 

I was watching the clock, cortisol percolating. By 2:15 I was loading both boys into the car. Hey, I could give presentations to hundreds of incoming freshmen with a squirrelly autistic four-year-old with lots of verbal stims at my side . . . right? 

The adrenaline was pumping again. How could she leave my kid stranded like that? How would I manage to get to campus on time? What was I going to do with Nick? An undergrad was going to hang out with Noah and keep him entertained, but I couldn't imagine how she'd be able to manage Nick too. Especially when I didn't have time to go over the Autism 101 primer.

Dude, how do you just not show up when a kid is counting on you? 

I expressed this to her supervisor, who I spoke to from the car in the midst of all this.

W. left work, met me in a parking lot, and took Nick. Then Noah and I rushed away. We pretended to be Speedy Gonzales because we were certainly speeding. We miraculously got to campus then ran to where his sitter was waiting. And then I ran to where a co-worker would be waiting for me to give our four presentations in a row to hundreds of freshmen.

I walked in the door with the freshmen. Sheesh. But at least I made it.

And now I'm hoping the cortisol will work itself out of my system so that I can sleep. Hopefully tomorrow will be a better day. 

My take on "curing" autism

Today one of Nick's habs gave me the best compliment. She said she loved that I had fun with my boys, loved that I accepted them and adored them for who they are. And I was like, "Well, duh, they ARE awesome" (except I used my grown-up mom words). 

It's true--those kids are awesome. I love how Noah not only memorizes the dialogue of movies, but that he also memorizes the characters' movements, too: he knows the choreography of an Indiana Jones fight scene down to every jump, kick, punch, and whip-crack. And Nick is a blast, too. We had the best party last night, thanks to his crazy autism-influenced sleep patterns. We played with his train, and he'd say "All aboard!" and wait for me to echo him; if I didn't he'd touch me to get me to say the phrase. Sure, being up in the middle of the night sucked when I had to wake up at 5:30 to proctor a writing placement exam, but it was so fun to hang out, just the two of us.

The hab agreed that my kids, like the others she works with, are awesome, but then a sad expression crept over her usually-happy face, "A lot of moms don't see it like you do . . . unfortunately."

As she said it, memory flashes of times I'd spent with other moms told me she was right. I've watched moms get angry at their sons for hand-flapping. I've watched moms freak out and forcefully intervene when their sons lined up toys. When I see my boys do those sorts of things, it doesn't bother me because I get it. I know they are over-stimulated or just simply in need of some way to organize the chaos. I get it. No big deal. In fact, it can be beautiful.

I adore the boys for exactly who they are, so it comes as a surprise to some that I use biomedical interventions with them. Why would I try to "fix" them if I really do accept them for who they are?

The rhetoric scholar in me is painfully aware that the language of the "cure" debate is a minefield. Words like cure and fix imply non-acceptance--my child is wrong and I need to change who he is. Ugh, I don't like that rhetoric. It reflects such narrow-minded absolute-ism. An absolute-ism very, very few of the parents who use biomedical interventions would ever espouse.

So if I do accept my boys for the brilliant, funny, unique little guys that they are, why am I pursuing biomed?

For me, it's that I can't stand seeing my boys in pain. No, I don't think that the traditional traits of autism are painful for my guys--the verbal stims and the spinning and the obsessive interests and the rocking. But there are other things that cause them pain. Like the chronic diarrhea Nick suffered for 3+ years. Like the pain Noah's extreme sensory sensitivity causes him, so bad at times it brings him to tears.

Because of the pain, I've been trying to treat their symptoms. With Nick, for instance, I tried to get all the information that I possibly could through lab tests, and then I worked to treat the things I found. Nick had extreme deficiencies in many of the basic nutrients and amino acids our bodies need, so I gave him supplements to give his body what it was missing. Nick had an on-going low-grade measles infection, so I treated that. Nick had dangerously high levels of lead, cadmium, and arsenic, so I began the process of getting those toxic metals out.

When I started doing these things, Nick started to change. His skin's ghostly-white hue changed to a healthy glow. He started to have long, peaceful nights of sleep. His sick stomach got better. And, yes, he started looking me in the eye and started focusing on the world around him in a way he hadn't before. 

He still has his kung-fu hand stims and he still obsesses on trains. He still loves numbers and letters. He still wrestles with his brother. He still laughs like mad when he watches Wipeout. He's still Nick, he's still awesome. He just has a healthier body.

Do I hope Nick's communication flowers someday? Of course. I want him to be able to tell me his needs the way his brother can. And do I want to teach my boys to interact with neurotypicals?Yes. But I happen to think that embracing neurodiversity is a two-way street, that neurotypicals share the responsibility of trying to understand different ways of thinking--it's absolutely unfair to place the burden of understanding on the autistic alone. 

I'll continue to do all I can to give my sons healthy, happy lives . . . and I'll continue to think that they are the most awesome dudes I've ever met, no matter what.