Thursday, June 24, 2010

Orville Redenbacher's Bonkersville Institute

Today we met with our pediatric developmental neurologist.  Remember our school psychologist, Qui Gon Jinn? The coolness factor has dropped considerably. Our neurologist is Orville Redenbacher.
I met with him for a one-on-one appointment last week, and I was impressed by both his extensive research in the field, and his awesome St. Patrick's Day bow tie.  Not every guy can rock that look in June.

But today was an appointment for Little Dude.  Of course, I had to cart in the whole crew with me, because my only Texan friend is out of town, mostly likely to escape my extreme neediness. 

So there we are in all our glory. The Pork Lo Maniac is doing a finger thing that looks like she's warming up to play the piano. The Peanut Butter Kid is telling her life story to the hapless receptionist. Little Dude is playing with two stacked Duplo blocks and making the loudest "sshhhhhhhhhhhhh" noise ever (this is sound that Anakin's Jedi Starfighter makes, apparently). Cookie is curled into an awkward ball, hands over her ears, trying to read. I'm so hopped up on a combination of coffee and city traffic that I'm literally shaking.  We're the picture of normalcy.

There is nothing quite like having all your children on display for a developmental neurologist to make you feel like a complete fraud as a mom.  I know we're all weird, and I could just read the doctor's thoughts: If this family isn't headed straight to Bonkersville Insitute, then my name isn't Orville Redenbacher. 

This normal weirdness of our family is why we didn't realize until recently that there was anything at all Aspergerish cooking.  When you live in Crazy Town, all kinds of things seem perfectly normal.  (Note: Also, normal things seem bonkers.  While Dr. Redenbacher was checking Little Dude's reflexes, Little Dude exclaimed, "well, this is just crazy!  He's hitting me with a hammer!")

I mention to Dr. Redenbacher that the more I read about Asperger's Syndrome, the more I notice quirks in the rest of us.  Is that what's meant by the "broader autistic phenotype?"  Dr. Redenbacher explained: "Sometimes, a kid can have Asperger's, and no one else in the family has any unusual behaviors.  We just don't know where it comes from.  In other cases, the Aspie kid is just the tallest mountain in a very large mountain range."  Then he smiled kindly and offered me some kettle corn.

Dr. Redenbacher ran through some more tests, and clearly indicated to me that Qui Gon Jinn's initial Asperger-ish diagnosis was wrong.  "Not ish.  Just is."  That's some awesome bedside manner you've got there, Orville.  Can I have some more popcorn?

The trip to the doctor's wrapped up with a lollipop and a surprise blood draw, which is not how it goes in any of the Berenstain Bears books, so obviously Little Dude became an enraged, hissing possum was somewhat displeased.  A child who experiences sunblock application as stressful is going to have a hard time with having several teaspoons of blood removed from his body.  I was so stressed by the situation that I forgot to ask what the blood draw was even looking for.  Lead? Autism antibodies?  Midichlorians*?  I have no idea.

The doctor also said that Little Dude will need an MRI, to check for a brain anomaly that some Aspies have.  An MRI machine is a brightly-lit, claustrophobia-inducing coffin that produces the tranquil sounds of metal banging against metal, right next to your clamped-in head.  After our experience with today's bloodwork, I'm going go out on a limb here and suggest that sliding my child into such a contraption might not go very well.  Going forward, I'm going to have to insist that both Little Dude and I be totally schnockered up on sedatives if we're going to even discuss an MRI.

* My apologies for yet another Star Wars reference.  On the other hand, if you're one of my readers that actually has Asperger's, you're welcome

19 comments:

  1. We are getting ready for that same type of appointment next week. If you are lucky enough to be able to go to Texas Children's for your MRI, they will knock your kid out. It's hard to watch, but way better than the alternative. Good luck on your appointments, and remember as mommies it's our job to put the fun in dysfunctional.
    Kathleen (from facebook, and mom of 3 nuts, 2 of which have autism)

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  2. Sounds just like my weird/normal family. Blood draws, invasive treatments etc and autism do not mix. But don't tell the know-it-all medical staff. They think they can get autism to do for them what i have been trying to get autism to do for 13 years...Never gonna happen

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  3. @Anonymous 1, the neurologist recommended a different hosptial because that's where he's affiliated. (The one he recommended can also do complete sedation.) However, with Little Dude's medical history, I'd prefer TX Children's. Calling our regular ped. today to ask about that.
    @Anonymous 2, I agree -- but I want the MD's diagnosis for our IEP.

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  4. The MRI is going to be difficult for a kid, I hope they can sedate Little Dude to make it easier.
    I remember my first encounter with an MRI 15 years ago (in a case entirely unrelated to AS). I had to lay still on a slab for 1 1/2 hour while a roaring truck-sized block slowly hovered over me. This was still in the MRI stone-age, the overall experience today is better but still difficult.

    I curious to know the reason for the blood draw, seems a bit odd...

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  5. Texas children's also does this neato thing where they put this super awesome numbing stuff on your kid's arm before they have to draw blood. It's still hard for kids on the spectrum, but this does make it a little easier. The waiting list for TCH can be quite long, but well worth the wait. My youngest, who has PDD-NOS, had his tonsils out there, and the staff was completely able to deal with, not only his needs, but mine as well.
    We went through the process of needing a diagnosis for an IEP, and the wait for TCH was very long, so we went with The Dan L Duncan Learning Institute, and our lovely school psychologist rejected it. I hope your experience goes better than ours.

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  6. Our school psychologist (Qui Gon Jinn) already verbally said he's going to recommend PPCD for Little Dude. I just want the extra documentation of an MD's DX just in case. I'm a little spoiled -- I was used to Children's Hospital of Philadelphia, which is consistently ranked as the #1 children's hospital in the U.S. Anything else seems local-yokel to me. I was told I wouldn't get into this other (lesser) hospital until fall anyway, because "they only have one anesthesiolgoist on staff". WTH?

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  7. PPCD is an awesome program. My two little ones both went, and it made a world of difference. If you talk to the diagnostician with the school, you shouldn't need an official diagnosis to get in. However, getting one before kindergarten will probably be necessary.
    As for the hospital having one anesthesiologist, that would be like a red light of inadequacy flashing. Unless you live in a small town, like me, a hospital should be well staffed.

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  8. OMG! I love, love, love your blog! It's great! After my daughter was diagnosed with Asperger's, I did a lot of reading about it. As I was reading, I noticed a lot of things I can relate to--about ME! It didn't help when my husband started reading and said, "One thing is really clear about this...You've been kissed by it as well!" Well, gee thanks, hubby! LOL! My daughter is definitely the highest mountain peak in our family!

    You write with such humor! I'm thrilled that I found this blog.

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  9. While it's not like your Asperger-ish group experience, the whole "family on display" thing made me laugh because it rang so true. I have had those days when every single member of the family is either acting like they're on drugs or look like they've rolled in peanut butter. In fact, yesterday, when we were wearing questionable clothing because I can't stand looking at the laundry this week, the kids had chocolate popsicle stains I somehow missed, we were selling back cans and bottles for that extra poor look, and I was buying cheap wine at my husband's request, we made a trip to the bathroom so my 4 year old could pee all over her panties (was getting them down past her knees before she sat down THAT difficult?). I threw them away and drove through the supermarket with my 4 dirty angels, including a sock-less 9-month-old in pajamas, with her hollering: "Mommy! I'M NOT WEARING ANY PANTIES! NO PANTIES! I DON'T HAVE ON ANY PANTIES!" Awwwwwesome.

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  10. @Marijn, I'll let you know when I find out.

    @Anonymous, you're right -- we SHOULDN'T need the outside diagnosis, but I'm betting it's something I'll be glad we have.

    @Cheryl -- thanks!

    @Cathy, we had a similar no-panties announcement (and display) once while standing in line at Dairy Queen.

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  11. I love the hammer comment. Too funny!
    My son recently got diagnosed with cancer and at Medical City Childrens in Dallas they sedated him for his MRI. I was very thankful for the full sedation (he is 2.5) BUT it is a very hard thing to watch. Of course, everything was completely normal and fine with how he was reacting to the sedation, just not how I like to see/hear my baby.

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  12. @Marijn, I talked to the neurologist's office today about the bloodwork. They said it was actually genetic testing, looking for genetic abnormalities such as Fragile X syndrome. It is so unlike me to agree to testing without understanding exactly what they're looking for. I was just so stressed out. I need to be more on top of things in the future.

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  13. I just found you today because of Marymac-Pajamasandcoffee and must say I'm so glad I did. You remind me of my life about 12 years ago. We just had kidney failure, instead of AS. Having all your freaks on display in a doctor's office, been there, done that, have the tics to prove it. Hang tough lady & keep rockin it.

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  15. OK. I knew you were brilliant, insightful and wise... what, twenty? Twenty-ONE years ago... god help us all... but, damn, funny!! Funny!! Serious funny, about all the right things in all the right ways. Thanks for forwarding me your stuff. xo

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  16. "Little Dude exclaimed, "well, this is just crazy! He's hitting me with a hammer!" Too perfect.

    Sorry about the MRI. Maybe some Voxygen will come in handy then?

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  17. OMG, rolling on the floor! Having had many run ins and outs with the pediatric neurology dept at TX Children's, I can relate! And yes, full sedation required for MRI, and will be for several years - at least over here. I can't imagine going anywhere else though; they completely have their program DOWN. I'm driving more than an hour into town to continue getting services there, rather than the local-yokel. P.S. I'm laughing just as hard at/with the comments from the other readers!! :-) So glad to have found y'all!! Now to continue with my back-reading ... seems I've missed a lot. :-)

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  18. I'm crying cuz I'm laughing so hard. Have a kid with anxiety, sensory issues and add and I knew exactly where you were going with the MRI thing before you got there. I have the same t shir

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