someone saw rainman

*

The very powerful and the very stupid have one thing in common. Instead of altering their views to fit the facts, they alter the facts to fit their views…which can be very uncomfortable if you happen to be one of the facts that needs altering.

~ Doctor Who

*

There’s simply too much to write this morning. There are too many stories. Too many moments – small ones, big ones, even really big small ones – to try to wedge into a single post.

I still haven’t even finished the story about our awful visit to the neurologist. I told you about the resident who didn’t bother to read the reams of information we’d provided, but I never got to the part where the 103 year-old doctor breezed into the room, asked absurd questions to which he’d already decided the answers and made it pretty clear in thirty seconds or less that the last thing he’d read about autism was Leo Kanner’s paper back in 1943.

Let’s spend some time on this one, shall we?

Playing the God complex for all it was worth, the good doctor decided to tell us that Brooke was ‘much closer to the Asperger’s side of it’ because ‘she has functional communication’ – as evidenced by the fact that when he asked her what she was doing on the iPad she’d answered, ‘Making a cookie.’ and well, that was enough for him.

He continued to rattle on about her savant-like splinter skills (which, in our preceding thirty-second question and answer session I’d made pretty clear that she doesn’t have or that we, at least have not yet discovered) and how they would compensate for her challenges.

If we spent another thirty seconds together, I’m fairly certain he would have dropped a box of toothpicks on the floor and then suggested that we head to Vegas to pull one over on the casinos.

There came a point where I very seriously contemplated asking Luau to take the girls out of the room so that I could tell Dr I Am Qualified To Tell You Everything You Need To Know About Your Daughter’s Developmental Trajectory Even Though I Know Nothing About Her where he could go with his desperately inappropriate assessment.

But I didn’t.

In the moment, it was (or felt) painfully obvious that nothing was going to change this man and his one-size-fits-all view of autism. And after a very, very long week, I wasn’t going to bang my head against the wall for nothing but a headache.

Our kids are as individual as – well, kids. They come in all shapes and sizes and color and flavors. They may share some common characteristics and they may often struggle with some common challenges, but they are not the same. Autism is an absurdly broad umbrella. I’ve said it time and again, Autism is one word, but there is no one autism. It is not an easy thing to grasp.

I spent last night with Geri Dawson, Autism Speaks Chief Science Officer (more on that another day, I promise), and I will tell you, the science of autism alone is overwhelming. When we ask doctors to educate themselves on the autism spectrum, we’re asking a lot. Dr I Am Qualified To Tell You Everything You Need To Know About Your Daughter’s Developmental Trajectory Even Though I Know Nothing About Her has been practicing medicine a long time. And suddenly here we are. An entirely new population with a disorder that even we can’t really explain.

So what do we do? We pick our spots. We find the doctors that we CAN educate. We talk to those who will be the ones in the lab coats in years to come. One by one, we tell them who our children are. We let our kids – as they always do – lead the way.

Just before leaving the room, Dr I Am Qualified To Tell You Everything You Need To Know About Your Daughter’s Developmental Trajectory Even Though I Know Nothing About Her made one final decree. With just as much authoritative bluster as he’d displayed throughout our brief visit, he said, “You’ve obviously done a LOT of work. You’re doing very well with her.”

And I had to admit it. Perhaps he was more perceptive than I’d thought.

šŸ™‚

23 thoughts on “someone saw rainman

  1. Last fall I brought my older son to see a psychiatrist to have his asd evaluation from the neuro-psychologist confirmed. The psychiatrist asked about siblings and I explained that I had a younger son who was seriously affected by autism. When I mentioned that I home schooled Wyatt, the psychiatrist graciously offered to medicate him for me if I ever decided to send Wyatt to school, stating that school would just be too hard for a kid like him.
    Here I was thinking he would have to evaluate or at least meet a child first before medicating.

  2. Oh, this sort of thing infuriates me to no end! Reminds me of the elderly ENT specialist we saw when Nik was about 3. He recommended removing Nik’s adenoids and tonsils without even examining him! When I had the audacity (ha!) to ask him to explain the function of the adenoids to me, he said (as he was walking out of the exam room)…and I quote, “You can Google it.” That was plain ol’ laziness!

    The doctor who made all the pronouncements about Brooke? Sounds so much like many of the “specialists” we have seen and dismissed over the years. We’ve finally found a wonderful neurologist who keeps current on as much of the research as he possibly can. More importantly, he takes as much time as is necessary to really listen when we talk about our son and he trusts our insights as much as his own training. A rare gem, indeed, but they are out there!

    • We’ve also been very fortunate to find a pediatrician who is nearly as versed as many of the “specialists” that we’ve seen over the years, and maybe more versed than some. He listens to me, never dismisses me, and has said more than once something to the effect of :”Pediatricians have to listen to the parents of their patients. Mothers, they just know so much. They know their kids and know when something is awry, even if they cannot put their finger on what it is. A mother’s instincts are nothing to mess with.” And he’s well, he’s old-er, but he’s current. I adore him, and not just because he was my pediatrician when I was a child. šŸ™‚ We’ve been so fortunate.

  3. Reminds me of when the dental hygienist (because, you know, they specialize in developmental disorders) told me that I must have “very very very high functioning Asperger’s.” Because sitting in a chair, almost crying, stimming to calm myself, no eye contact, and ignoring her questions says high functioning anything. (I’m not going back to that dentist).

  4. This makes me think about a psychiatrist we say years and years ago. When I described what was going on with my oldest who was 6 or 7 at the time. (he was not at the apt as she wanted to meet with parents first dx at 11 with ASD) she automatically came to the conclusion that he was ADHD and was wanting to write me a prescription right then and there without ever meeting him. I left the office and never went back.

  5. “If we spent another thirty seconds together, Iā€™m fairly certain he would have dropped a box of toothpicks on the floor and then suggested that we head to Vegas to pull one over on the casinos.”

    Ha! I love your sarcasm.

    I also like the Dr. Who quote. That’s going in my quote file.

    Like everything in else in life, it’s all about picking your battles. It sucks because you have to find another neurologist, make another appointment, etc. Hopefully the next doctor will be less of a “donkey”.

  6. The very first line of the Hippocratic Oath is “First DO NO HARM”. How sad that so many of them fail the very oath they had sworn to uphold. There are far more quacks out there than true healers. As a Registered Nurse it infuriates me but as a mom… it sickens and shakes me to my core.
    But I do agree with Dr. Quack on his last sentence. He definitely got THAT point 100% correct. You ARE an incredible mother.

  7. On the very last visit to a pediatrician that I loved, I commented that my 6 year old daughter (confirmed ASD by neuropsych, psych, & neurology) spoke with the articulation of a <2 year old (recent speech eval), he said she didn't need any speech therapy. We needed to have her play with other kids and she would correct it when THEY MADE FUN OF HER.

    When I pointed out that getting her to play with other kids was a challenge, um, given the whole ASD thing, he said she wasn't autistic at all, we just needed to show her that other kids have toys she'd like and then she'd play with them. (Palm to forehead) Not sure why I hadn't thought of that in the previous 6 years of her life.

    I'm glad your neurologist was at least able to see that Brooke has 1 amazing family & team of people that work with her!

  8. Cymbie’s neurologist looked shocked when I told her the GF/CF diet was working. She fuddles through her papers and said “but we had her tested for celiac, and the levels of casein were normal”..Ummm, yeah. Sad that I know more about biomedical treatments and why they work for some children then a doctor with YEARS of schooling and experience does. I didn’t waste my breathe on her explaining it. She also looked shocked when told her in 6 months she had gained about 100 words. She said “Oh, but they are still mostly echolalic, huh?”. Yes, doctor, let’s just look past the fact that her language more than doubled in 6 months and focus on the fact that her speech is still repetitive. Then she examined her while in a strange room with a strange person and while she was already over stimulated at this point. She would not follow the doctors light with her eyes. nor would she push out with her hands when the doctor asked her to. Never mind that I’ve seen her track light and objects very well in OT. Or that she has just learned what “push” means and is grasping how to push a ball to some one else for the first time. Never mind. I didn’t bother telling her. Seems like it’s all black and white. She sees her for 10 minutes twice a year and writes up her little report. Honestly, it doesn’t mean much to me. Her family, teachers, and therapists know and understand more how hard we are all working, her most of all…and how amazingly far she’s come in a very short amount of time.

  9. When Jack was diagnosed, the dev ped said, “You are two college educated people, you’ll figure it out.” Seriously? My college degree is in journalism…connect the dots for me here. xo

  10. Can I just say, with no condescension, that I am SO very proud of you. In that situation, it is so easy to lose it. He was wrong, yes. But you understand why he’s the way he is and you didn’t waste any time on him. You showed tolerance, even if your Mommy-knee-jerk reaction was frustration. I am so thoroughly impressed with your ability to keep focus on what’s more important for Brooke. To change what you CAN change and not get bogged down in what you can’t. pure awesomeness.

    p.s. I’m stealing that quote. An absolutely perfect match for this post.

  11. As always, I’m both amazed at your restraint, and the way you paint a picture with words that makes me feel as if I was right there with you. That toothpick line almost had me on the floor. Here’s hoping that doctor reads this post…

  12. I know we are asking a lot to find the answers to help our kids, but I wish they would. They keep telling us that Mason is showing signs of being closer to the Aspergers side as well, but they can’t say much more other than I must be working really hard with him to get him where he is. I’m tired of not knowing, of not having anywhere to turn and I’m tired of all the guessing. I know it’s not fair to ask them for a proper diagnosis, I know they may never be able to pinpoint it exactly, but I want him to get the education he deserves. He’s miles ahead of his other classmates and according to the school he can’t be moved ahead due to his low social skills. The end result is that he’s bored and frusterated, hates school and every day is a fight to get him to go. When they do psyche exams he’s off the charts; apparently he has the IQ of a 4th grader with the reading ability of a 6th grader. These tests were confirmed when he was in kindergarten, he is now moving onto the second grade and we are no closer to helping him. He has already learned to dumb it down to get the teacher’s attention and had aced first grade by the end of the first semester. So forgive me, but I want answers and I want them soon even though I know it’s not possible…

  13. Amazing post about Dr. Quack. I read it aloud to Grandpa DD as we are in the car on our way to see you. I loved reading the part aloud that you wrote repeatedly describing the know it all doctor but we’re still shaking our heads in disbelief at his idiocy. You did take the high road!
    Love you,
    Mom

  14. Those doctors make me so mad; I have had a few in the past. I lucked out and found a great neurologist; very nice man and his brother has Autism so we spent a lot of time talking as well. Sorry about that visit. Glad he acknowledged your hard work!

  15. Oh geez, I hear ya. We once took E to a neuropsych at a major Chicago hospital that came highly recommended by another doctor I trust. He spent all of 15 minutes with us, barely looked at E and told me that if I expected my child to be perfect, I was seriously misguided. He then said that E might find things more difficult than the average kid but that difficulty was a fact of life for many people.

    He ended our meeting by giving me a list of books to read, which didn’t look familiar to me. So when I went home and looked them up online, I found that they were Christian self-help books. All I could think of was that was a few precious hours (including driving and parking) wasted that I’ll never get back. Sigh.

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