New series: My toddler…

The other night, we went to a barbeque with D’s coworkers.  One of his colleagues has two kids, and they were there, too.  One is roughly 13 months and the other is roughly 3.  (I didn’t ask for specific ages but the mom was talking about potty training, and how they would be probably trained at the same time, at 4 and 2…so it isn’t a bad guess for the ages.)

I will say that I *used to* evaluate kids ALL. THE. TIME.  Because for my job, I was evaluating kids ALL. THE. TIME., and giving these kids diagnoses that they would potentially carry with them for the rest of their lives, and *my* role in the evaluation was to ask their parents a bunch of questions and observe the kids in their home environments.  But?  The kids were all pretty much scoped out for me.  This was for a research project, and the kids were referred by their EI (early intervention) providers for some concerning symptoms, and we had done the M-CHAT (Modified Checklist for Autism in Toddlers) on the phone with the mom, and *sometimes* we had even done the ADOS (Autism Diagnostic Observation Schedule) with the child in our lab, so I had a good sense of what the kid was doing EVEN BEFORE I was in the family’s home.

So I spent a lot of my time with “typical” toddlers (or those who did not carry a diagnosis of an ASD) observing them, too.  Because I can describe what “initiating joint attention” is – in layperson’s terms – with the best of them, but to see it?  Is something entirely different.

And I am slightly embarrassed to say that I would sometimes diagnose our friend’s child with an ASD, and those children appear (now, a few years later) to be completely normal.

OK, that happened once.  Just once.  And there were many more kids that we met that I decided were normal and, lo! – they were.

(For the record, I *NEVER* shared my opinions with other parents unless I was specifically and directly asked.)

So ANYhow, I stopped this practice probably 2 years ago, mostly because I got a decent sense of typical toddler behavior all on my own, PLUS I started evaluating teenagers and adults, and the bulk of my clinical experience to that point had been with teenagers…so it became less necessary.

I say all of that because it kind of explains my new post series, called, “My toddler…”

This weekend, we met these two kids, and the three-year old (a boy) was just kind of hanging out by himself, being cute, whatever.  I honestly didn’t pay much attention to him at first.  D and I got some food, put it on plates, and walked out to the balcony where other people were hanging out.  Little Guy came out, plopped himself next to me, and, without LOOKING up at me or saying a word, reached over to my plate, dragged it over in front of himself, and proceeded to eat my grilled corn on the cob.

Which was, frankly, hilarious.  I just got up and got another piece of corn.

Then there was a cordless phone in the middle of the table.  He reached out to the phone and started messing with the buttons.  I decided that was probably not the best idea (his parents were inside, and the rest of the table was totally not paying attention to him), and redirected him by asking him if *I* could see the phone.  I reached out my hands.  Again without making any eye contact, he handed the phone over, and then proceeded to take his (my?) corn, go over to the grill on the balcony, and try to stick his corn in the grill by saying, “Hot.”  “Hot.”

Which we interpreted to mean, “I would like this corn hot”.

(The grill was off by that point, for those of you wondering about child abuse and neglect here…)

So one thing, that I am not going to ask about because I *KNOW* without asking, is that this child’s expressive language is delayed.  VERY delayed.  Two-word phrases, all prompted (some less prompted than others, but the unprompted, spontaneous language was all comprised of single words), and very few of the phrases included a subject, like, “Corn hot”, or “I go in”, etc.  So let’s leave the language alone, because it is clearly an issue.

However, here are the things that I would normally pick up as a concern:

1)  The taking food without looking up at me and making eye contact.  Yes, it was funny.  But do three-year-olds typically make eye contact when taking something?  The food was certainly far enough from him that he PROBABLY did not think it was his, but the way he grabbed it…well, he probably did know it wasn’t his.  In fact, later in the evening, he proceeded to grab food off my plate again (I really don’t care about that), and his mom was sitting next to him, scolded him, and he looked up at me again, as if to ask if he could take the raspberry…which says to me that he knows how to ask permission.

(Nonverbal kids can still “ask permission” to take things, by using joint attention and eye contact.)

So…does your kid make eye contact when grabbing something from someone else?  A stranger?  A familiar face?  A parent?

2)  Eye contact, round two:  if someone asks your child to hand them something, does s/he make eye contact with the individual asking for the object?

3)  Tantrums:  if your child likes an object, and is playing with the object, and a stranger asks him to hand it over (in a happy, fun voice), how would he respond?

4)  Playing with the grill:  this is a two-part question:

a)  Does your three-year old know that something is “hot”, and should not be touched?

b)  Does your three-year old try to mimic you, by putting things in the grill (or on the stove)?

5)  When saying goodbye, does your three-year old:

a)  wave upon mom/dad saying, “Say bye-bye”, or in response to others waving to him/her

b)  Wave on his own, because he knows he’s leaving, and that’s what you do when you’re leaving

c) not wave.

I will post the description of what *I* might be looking for in an evaluation of a toddler (either typical or with suspected ASD) in my next post.  I’m really curious to know whether I am too harsh in my interviews (maybe?  Although I follow the algorithm of the interview VERY tightly) and whether my image of a “typical” toddler is, in fact, “typical”.

So…what does your (2-4 year old) kid do?  (**Don’t worry, these questions comprise only a *TINY* proportion of what I ask about, so even if your answers are, “never looks at anyone, doesn’t wave, and plays with fire”, I will not think any differently of your child.)

Thanks for your responses!

On this week’s episode of Private Practice

Or, “On Vaccines and Autism”.

I am going to jump off into the great divide.  With my previously-withheld, but now-spewing-forth, opinion.  

Before I give my little spiel, I will say this:  I am not going to try to give you a comprehensive literature review on this subject.  There is a TON of evidence out there.  I just checked back very quickly with Dr. Google prior to starting this entry, and was bowled over by the sheer number of web pages devoted to spewing out the research, dissecting the research, and interpreting the research for you, the concerned parent/interested party.  

If I were the parent of a 17-month old, about to be 18-month old, I think I’d want to crawl into a corner.

So I am not going to delve into the research, although I would be happy to help anyone who has questions or would like full-text articles for a citation.   You can find a link here that summarizes  the majority of the MMR-autism studies, although you will need to trust that they summarized the findings correctly.  And if you are doing research, you should DEFINITELY check out CHOP’s website on the topic, which is my absolute favorite.  They update it regularly. 

With that disclaimer, here is where I stand, as someone who has been working in autism research for the last several years.  I’ve interviewed hundreds of families with kids on the spectrum, from 12 months old to 55 years old.  

More than that, however, you should also know that I speak as someone who is not only at risk of having a biological child with a 1 in 150 chance of having a spectrum disorder (that is the population incidence rate) – my husband and I have a fairly significant family history of it.  So instead of 1 in 150, our biological child has roughly a 1 in 30 chance of having autism.  

Yes, it’s genetic.  

Genetics play a significant role in autism genesis.  It’s not genetic like hemophilia, or color blindness, or celiac disease is – it’s not even genetic like an autoimmune disease is.  It’s genetic in ways we don’t fully understand yet.  However, there are lots of studies occurring now to try to unearth the genetic underpinnings of the spectrum:  some rely on family phenotyping.  Some rely on biomarkers, like blood samples and DNA swabs (usually from cheek cells).  But we’re still working on what predisposes kids to developing a spectrum disorder and what causes them to actually evidence the symptoms that contribute to a diagnosis.

If you are curious about phenotyping, Simon Baron-Cohen has a great questionnaire online that will give you a sense of whether you might be more spectrum-y than not:  The Autism Quotient.

So anyway… vaccines?

Honestly, I wish it was so easy as to know it’s a vaccine that causes autism.  Do you know how much easier it would be?  We could just say to parents, “Screw the vaccine,” and we would have no more autism.  My husband and I could have a baby and just not vaccinate him/her, and we would be confident that he would be as neuro-typical as the next kid.

But, see, it’s not that easy.

I am vehemently against indicting the vaccines for the “rise” (and rise is in quotes:  there are a lot of reasons we have a higher number of recognized cases of autism, and while there is a moderate rise in cases today, it is not nearly the spike that it would appear to be) of autism spectrum disorders.  For one, vaccines do prevent the illnesses they are designed to prevent.  Those illnesses can kill kids or those with weakened immune systems.  Historically, we’ve allowed parents and families to make individual decisions about vaccinations because the rate of immunization remained high enough to protect the population (called herd immunity).  When the immunity (or vaccination rate) of the population falls below a critical mass, the entire population is at risk of an outbreak (and we’ve seen recent outbreaks of vaccine-preventable diseases in Utah, San Diego, Colorado, and other places).  It is in the public interest to vaccinate.  Telling a parent that her child has autism because she vaccinated – a civic duty, in my honest opinion – is an abdication of the truth, and it does the kids with autism a disservice.  If we truly believe that autism is caused by the MMR vaccine, kids who were not exposed to the vaccine would not get autism – but they do.  Many, many, do.  

Here’s the kicker, though:  we give the MMR vaccine at 18 months, right?   Guess what age is the most typical onset of a regression in a child with autism?  Yes, you would be correct:  18 months.  

It actually turns out that kids who reportedly regress are often not actually typical to begin with.  That sounds very harsh, and I mean no disrespect – and for sure, some children *do* regress.  But it is not the norm for children on the spectrum.  In general (with many exceptions), kids on the spectrum *never* really look typical in early childhood.  They may echo, they may lay on the floor staring at the wheels of a toy car, they may spin around in circles and look up at the ceiling or out the sides of their eyes at the edge of the counter.  They may give you a high five in response to you throwing up a hand, but they’d never ever initiate it.  

At 15-20 months, when a regression typically occurs, they are regressing from atypical, not typical, toddler behavior.  Which is tragic in its own right, but it is *not* due to a vaccine.  

And in those children who do not regress, as time passes and they emerge into toddlerhood, it is simply that those differences become more marked as speech and gestures fail to come online, play behaviors are distinctively lacking, and social skills are significantly different from toddler peers.  

It is convenient to blame these differences on a vaccine, but it is not accurate. 

However, obviously something is causing autism, right?  What is it?

Well, that is the million dollar question that I cannot answer outside of a sincere belief in role of genetics and a curiosity (on my part) in things like the food supply and other environmental exposures.  It appears that genetics plus an environmental exposure triggers autism, and it appears that is a first-trimester exposure (which is freaky, right?  Because that’s halfway over before some women even know they are pregnant), versus an exposure later in pregnancy or after birth. 

(Which, again, just to hammer it home, is an exposure way, way, way before a parent might even debate vaccinating their child.)

So what are we (my husband and I) doing?

My husband and I plan to vaccinate our child, EVEN THOUGH we know that we have an increased genetic risk of having a child on the spectrum.

Let that sink in a little.

Yes, we will be vaccinating our child.

Are we insane?

No, I do not think so.  I have combed through the research and I have read the IOM report (ok, some of it.  It is long).  I actually know the person who headed up a lot of the IOM research and I trust her research and methodology implicitly, particularly on this topic.  The research against vaccination is weak, and the studies are poorly conducted that cannot be replicated. (My public health degree was good enough for me to determine that, and perhaps a follow-up post to this would be critiquing the myriad studies on this topic.)

A few years ago, my colleague gave birth to an adorable baby boy.  Two weeks later, he fell very, very, very ill – with pertussis.  He survived, but not without ending up in the NICU once again for several weeks.  His parents were terrified.  Do we make individual decisions (at very little personal cost) that can cost other innocent citizens their lives?  No, I do not think so.  Given the research that is out there – that contraindicates vaccinations in very few populations – no, we don’t.

That being said, I do not think my husband and I will vaccinate on a traditional schedule.  The only person I’ve ever had sex with is my husband, and the same goes for him (I know, right?  Gasp!  We freakish prudish people DO exist!) and I don’t know why on Earth my child needs to be vaccinated for a sexually transmitted disease at birth.  Moreover, I have an autoimmune disease, and my child has a strong chance of being born with a mild autoimmune condition him/herself – I simply do not believe that his nascent immune system needs to be insulted as with the traditional vaccination schedule.  However, that being said, our child will be fully vaccinated by his/her fifth birthday, at the age that he will become more likely to be a vector of disease than any previous time in his life.  We may make more trips to the doctor, and we may split up the vaccines (giving an M/M/R series, rather than a single MMR jab), but we will fully vaccinate.

And in the absence of a religious or moral objection, you should, too.

Commence kind dissent below.

On TV. And vaccines.

I wrote this whole long post about vaccines and autism.  Not really about research, because anyone can check out Dr. Google, but about my thoughts (as a professional in autism research) and our position (as a couple with a significantly increased genetic risk of having a child on the spectrum).  

Then I didn’t publish it.

Which, to my credit, is a Big Deal.  I usually just impulsively hit “publish” and wonder if I’ve pissed anyone off.  I mean, I hope I don’t, but sometimes I do.  And then I feel guilty about it for days, weeks, months.  

I’m not even kidding.

So I am going to sit on that post, and if you are interested in it, I will publish it later.  Anyone?

You know, I’ve also totally failed on the Patriot Act post.  Sorry about that.  I’ll get to that after finals – or maybe on Inauguration Day.  :)  Yay, Inauguration Day!!

Speaking of Inauguration Day, I cannot wait for spring.

So anyone?  Vaccines?  What do you think, before I spout off my soapbox?  I was inspired to write it because of the Private Practice episode last night (did anyone see it?  Yes, sad, but not nearly as sad as some other episodes of late).

Speaking of sad, Grey’s Anatomy?!?  WTHeck?  Seriously?  Does Izzie have a brain tumor or something?  DB thinks that they just really regret ever killing off that dead guy.  I mean, didn’t he DIE already?!?

Back. to. cleaning.  

And studying.

And “forgetting” other various seemingly unimportant things.

Because now I’m on a roll

I guess I need to sign up for that thing where you write a post every day.  I haven’t missed a day yet, which is weird because I’m kind of waiting to run out of things to say.  It never ends, the constant drivel in my head!

Today was a busy day, actually.  I had a meeting at our church to discuss some of the missions work we’re involved with, and then I had to work.  Both were blog-worthy events.  The missions stuff I will post about in a protected post, because it’s a specific partnership with a major relief organization, working on a major health issue in Asia.  I’m excited because it’s a great way to use my interests and passions in ways that will directly improve people’s lives….well, Lord willing.  So when you see that post, let me know if you’re interested and I will shoot you the PW.

Then I had to drive out to someone’s house to interview them for a research project on autism spectrum disorders.  I work in a bunch of different studies; this one is on older adolescents and young adults in their transition from the service world in schools to the adult service world.  That’s not really relevant, though:  the relevant part is that although I’ve been doing this for three years, now, there are always interviews where I leave the person’s house and I think to myself, “YEAH!  I could do that!  What an amazing family!  Having a kid won the spectrum is challenging, but TOTALLY POSSIBLE”…and there are interviews where I leave the person’s house thinking that I really could never be in their position, that ohmygoshhowcouldIEVERthinkIcoulddothat and WOWITISSOHARD and PHEWTHANKHEAVENSIAMOUTOFTHATHOUSE.  Which, obviously, is not the best thing I could be thinking, but there are just some families with really, really, really limited resources, really, really, really limited kids, and lives in which everything is a major struggle.   And there are some families with really limited resources, really limited kids, and really rich lives.  And there is every iteration in between (on any dimension of that sentence:  unlimited resources, very capable-but-socially-challenged-kids…etc).

The mother I interviewed today was of the former ilk:  everything was a major struggle, the affected child was in her (!! yes, a girl*) mid-twenties (essentially nonverbal, living in a residential facility with some significant behavior issues), and the older daughter presented Mom with her own share of challenges, including two unintended pregnancies and an extended matriculation to attain a bachelors degree, hampered by finances and children.  Mom herself worked multiple full-time jobs and was not particularly enamoured with her husband.  Although she told me before I drove out to her house that she had very little time available for the interview (it normally takes 3 hours, and she told me she had no more than 2 available) she talked for about 45 minutes after the interview was over about her family, her stresses, and the challenges of her daughters’ limitations.

Normally, when I leave an interview like that, I breathe a sigh of relief that it’s not me.  I pray for the family – for their healing, for them to feel peace in the midst of all of the chaos – but I remind myself often that I have that luxury to be able to pray for peace and healing, to be able to walk away.  With our situation, I feel like anything short of that is awfully entitled on my part; we could be in those shoes, too.

But something struck me in the middle of that interview – a peaceful something – I’d call it God.  I looked at the 4-year old grandchild sitting, coloring pictures and asking for crayons in full, complete, and appropriate sentences with appropriate eye contact, hands held loosely at her side.  She looked about as typical as any other four-year old – even though her aunt is the individual affected by autism.  I thought, hey – that’s almost the same genetic risk we have – and it made me feel a little bit better.

And then it hit me, as we discussed finances and pregnancies and why my interviewee thought that marriage was the worst possible thing in the world, with children a close second (and knots forming in my stomach as she spoke):  it’s all about perspective.  Not my perspective.  Her perspective.  That’s the difference between the families with limited children and limited resources – not the differences in their abilities, although I’m quite certain they would say that; frankly, there is virtually no difference in the children’s abilities or the family’s resources.  It’s the differences in the outlooks, the expectations, the celebrations.

And on that note, I didn’t sigh with relief as I left the house.  Instead, I simply said my prayer for the family, thanked God for my ability to walk away from stress when she was unable to do so, and then prayed for the perspective to handle whatever He throws our way with grace, humility, and love.

DB often thinks this job is a nightmare for us, given our situation and my sometimes limited ability to implement appropriate boundaries in the process of this counter-transference.  However, it is days like today that I feel the job is a gift and a window into lives that I am blessed to try to understand.

(I will follow this post with some other thoughts on this topic later.  I understand that this is a hot-button topic on something that everyone feels very strongly about, and by no means am I trying to diminish the struggles of families raising children on the spectrum.)

*in the distribution of autism spectrum disorders, boys outnumber girls, 4:1, which makes it hard to recruit girls for studies (in fact, the other studies I work in do not enroll girls, with the exception of the little guys (toddler ages).  Given this girl’s very limited skills, I wondered about Rett’s syndrome, but it is not my question to ask.

Kids as political pawns

So I was going to write this whole entire post ranting about McCain and his unabashed use of his daughter and Palin’s son as political pawns, and then I saw these funny videos (previous post) and decided to scrap it with just a short comment, and THEN, because I have some issues, apparently, I wrote the post anyway. So here it is…prompted by McCain’s claim that Vice Presidential candidate Sarah Palin has a heart for families raising kids with special needs, specifically naming autism as a cause that she holds dear.

His direct quote:

“And, by the way, [Palin] also understands special-needs families. She understands that autism is on the rise, that we’ve got to find out what’s causing it, and we’ve got to reach out to these families, and help them, and give them the help they need as they raise these very special needs children.

She understands that better than almost any American that I know. I’m proud of her.”

For the record, Sarah Palin does not care one bit about kids with autism, and she does not know anything about autism, last I checked. In fact, last I checked, her kid has Down Syndrome, a condition about as different as one can get from the autism spectrum on oh-so-many levels, and it would appear that, frankly, she doesn’t have the first clue about what it means to raise a special-needs child or even a typically-developing baby, given that she has the luxury of bringing her child to work, having her husband stay at home with him, and being able to provide him with early intervention services on the road.

Notwithstanding, McCain made his (seemingly desperate and out-from-nowhere) claim that his presidency would support autism research, since Palin’s child has special needs and therefore she has this soft spot in her heart for kids with special needs (and, apparently, research on topics peripherally related-to-her-cause-but-very-popular-in-this-country).

Which, frankly, makes no sense.

And if you are actually someone considering McCain because of his campaign’s “heart” for special needs kids, please know that, actually, it is Obama’s plans, not McCain’s, that will help your child more. In many states, parents must pay for intervention services out of pocket; it is only the very BEST insurance that will cover such services as speech and language therapy, occupational therapy, and physical therapy (particularly after the child turns three). In fact, I can say this, because one of the best things about the FBI is that *we* have the same government insurance that Obama talks about regularly, and it *DOES* cover those much-coveted services.

Under the Obama health plan, many, many, many more Americans will be covered by health insurance. By treating the entire population as a risk pool, we will lower the cost of ALL health services, including those for kids with special needs.

In contrast, $5K will barely cover 6 months of special needs therapies, much less health insurance for a high-risk family.

And finally, regarding research on autism: there is a ton of it. I work on 6 different studies of autism, some with MRIs to determine functional and structural differences between the kids on the spectrum and typical kids; I also work with 3 longitudinal studies and help out with a phenotyping study, which is like a genetic study (only it works by looking at family phenotypes). These studies are only a tiny fraction of what is available in the greater metropolitan area of where we live. I am happy to give information on these studies to anyone who wants it. However, the point here is that the research is occurring, it is FINALLY moving away from the totally politically-motivated research on vaccinations, and there are huge breakthroughs. We don’t need McCain to do that.

That was a lot longer than I anticipated.

What is WITH these Republicans and their desire to use their kids for political gain? We have the infant with Down Syndrome, the pregnant 17-year old, the adopted daughter of the McCains (don’t get me started on that one – way to advocate for ethical adoption, huh? Take a child off a plane, hand her to her new father like a puppy, and say, “hey, can we keep her?”), and the sons of both campaigns serving in Iraq.

We don’t near nearly so much about the Obama/Biden camp, even though Biden’s kids are similarly deployed. Makes you wonder, huh?

Decided.

I know you’ve all been waiting with baited breath. All…three of you.

I have made a decision (that link is in case you want to refresh yourself on the oh-so-important topic in question. Although there really aren’t all that many of you, I keep opening my big mouth about this election all over the internet, so maybe there are new people reading out there. Hi!)

FYI: This is a really, really, really, REALLY LONG post. I should break it up, and maybe I will do that later, but I’m just going to publish it like this. Feel free to skip it if you want. I’m not going to be offended. I just wanted to document it here in one place so that when I re-think the decision, I will be able to return to my thinking here.

I actually made the decision last Wednesday, but I wanted to sleep on it. A lot. And then yesterday morning, I got majorly cold feet. I sweated. I almost puked. I basically had a panic attack, which I have pretty much never had, and maybe I will regret posting this on the internet when we want to adopt internationally but you know what? It is situation-specific, so not pathological. Moving on…

After months and months and months and months of talking about all of the reasons I did not like my program – months of coming up with very rational, solid reasons for moving away from the program – I suddenly couldn’t bring myself to go to the school to declare my plans. I sat, frozen on the couch, wracking my brain to think of one good reason to leave the program. I couldn’t. Considering that I have bitched my way to this point, I found that amazing (I could remember complaining. I just couldn’t remember why I complained).

I’m not sure what inspired this temporary period of amnesia. Maybe it was because I unintentionally declared my plans by failing to show up for a Very Critical Seminar where it was painfully apparent that I was absent. We arrived back home at 2:00 am, the cat had peed all over the floor (not because of you, L), I cleaned it up, collapsed into bed, and then when I checked the class schedule at 9:00 am, I realized that the class started on Tuesdays and Thursdays at 8:30am. And THAT, folks, was not how I was going to make my exit. I am not a passive-aggressive person, and that is about the most passive aggressive way to depart – by blowing off the course taught by the faculty in charge of the doctoral program.

So I sat.

And sat.

And sat.

(And watched CNN, because as I said, man, watching Palin news is like crack for me.)

After a few hours, I dragged myself out the door, drove to school, parked a ways away, and walked…slowly to the building, trying to think of what I would tell my (truly awesome and rock star of an) advisor. And then I went to the hospital next door to get some blood work done, because I just could not bring myself to walk into that building.

I went to class today, and then I talked to my (awesome) advisor. And when it was done, and I signed some forms and talked to some more people, I felt more excited and secure about my decision than at any point in the last 3 months. And that, my friends, is peace that can only come from God.

So here are the reasons that I am leaving the doctoral program:

1) It is NOT FUNDED. It is the only doctoral program that I know of that is NOT FUNDED. My school thinks it is so awesome that it does not need to fund students to have them come rushing through its doors. And, unfortunately, it is right. It makes me feel sick to my stomach to think that I have fueled their self-perceptions by paying them tuition myself, too.

My history with this program is long, and I will try to make this short.

I applied to this program straight out of my master’s degree. I worked with a faculty member at Michigan (there you go – a place name!) who really encouraged me to pursue a Ph.D., and I chose public health because I wanted to prevent things. I loved the notion of public health as a field designed to protect and promote population health, and so I applied to doctoral programs all over the country.

When I applied to these programs, DB and I were just friends.

When I got into these programs, DB was on his way to the Academy.

When I learned about the funding at these programs, DB and I were engaged.

And so it goes.

I was offered full funding plus a sizeable stipend at some very competitive schools across the nation. I am not bragging – I am very self-deprecating – but I was pleasantly surprised at the response I received from all of these different schools, save one (that I will call Majorly Sucky School, or MSS for short).

At the same time, DB found out that he would be assigned to the city that we currently live in, aka the location of MSS. So I accepted their offer with the prayer that they would at least ATTEMPT to match the other offers financially and went off to work in Vietnam for the summer. When I returned, the financial situation had no more changed than I had grown another foot, so I took one class (to secure health insurance, since I was also unemployed at that time and had health concerns that required group health insurance – I can’t just buy a health insurance plan on the internet). Then I took a few (sequential) leave of absences. Then I took another class. In the meantime, I worked full-time in various research positions, and when one of them lost its funding for a full-time position, and DB was making enough money that I could work part-time and we wouldn’t starve, I decided that maybe I could stomach the thought of the doctorate. I was getting older, I wanted to start a family, and the timing was pretty good.

There was a lot of drama that surrounded my return to the program, but the upshot of it was that I changed advisors to my awesome current advisor, and I started the program last fall with a fairly awesome cohort of people…but no funding. And I thought I was okay with the no funding, until I wasn’t…because seriously. What does it say about my program that everyone there is getting a degree because they are sitting on a trust fund or have a spouse that can pay their way for them? This is a RESEARCH DEGREE, not a law or medicine degree that has the potential to be profitable at the end.

And I realized: for the rest of my life, I will always be chasing money. That’s what research means. Chasing money.

And I also realized: I should not be chasing money to fund my doctoral coursework, before my qualifying exam. Students often chase money (apply for grants) to fund their research for their dissertations – that’s why so many grants stipulate that they are for “ABD students [all but dissertation]“, or “post-coursework” students. Basically: no grant program wants to pay for classes.

So my school thinks it can just charge tuition. No big deal.

Except it is a Very Big Deal.

And I also realized: this program – solely because of the funding – makes me feel very, very, very, very, very unintelligent.

Some students are (partially) funded, and some are not. Some students are rich because they married rich lawyers, and some are destitute and working three+ jobs (I have two, and I picked up the second mid-term when I realized we needed more money. But I make more than a research assistant because of the autism gig, which was a saving grace, because I need more than the 2-3 hours of sleep I’d be getting with multiple jobs that pay $10/hour). I don’t know anyone who hasn’t taken on at least SOME debt in this process.

Compare that to a program of similar caliber that offered me full tuition and a $25,000 stipend.

And then I was talking to a friend who is on faculty at a nearby university, and he was complaining because HIS doctoral students were bartending (bartending! How could they not be working in HIS lab 24/7?!?) and I said, “you mean most students DON’T rely on bartending?”

It’s only money, but it’s money. And it’s money we could be spending on adoption. It’s money I don’t want to pay in the future. It’s tuition money for a degree I’m not sure I want.

And if I want that degree in the future, we’ll be living somewhere else, and I will go to another university and obtain that degree and be perfectly happy because it will be funded. Because THAT is the way a research degree is supposed to be.

2) Career. This ties into money.

I have said many, many times on this blog that I am not interested in a life solely devoted to research. I appreciate research. I actually love reading research. I reserve the right to engage in research.

But in our classes, do you know who comes to talk to us about their research?

Do you know the qualifications of 4 out of my last 5 supervisors?

All MDs. Not Ph.Ds, who arguably are better-qualified to direct research, but MDs. Clinicians who have an interest in a particular topic.

Ph.Ds, with many exceptions, engage in research with no clinical work. MDs engage in clinical work that directs their research, and they do both.

And I am a strong, strong, staunch supporter of practice-directed research. What good is research if it is not practical and based in reality? What effect will it have on policy? It is great that we find out things like this or this, and it is totally fascinating, but there are other research findings that are incorporated into policy initiatives, and these are the kind of studies that we need to promote as practice-oriented and grounded in reality.

There are other degrees that offer more flexibility (and, I will submit, more pain and agony) than the path I am on, and they will offer very similar options when I am done. AND, more importantly, I believe I’ll be more effective at doing whatever I’m doing at the end of an alternative path.

3) Career. Where can I work?

My husband could be ordered to work anywhere in the country, including places that I might not choose to live (aka the Deep South, or the Middle of Nowhere, or…). While I do not have anything against these places, per se, I have to say that they are not places I look forward to potentially living.

We want to move overseas. In the FBI, if we move overseas, we must start with a place that is less desirable (think hazard pay and one of us – maybe even me – must learn how to actually cook from non-frozen foods. Actually, there are a lot of other things we’d be more concerned with thinking about, but those are the effects I’m comfortable sharing on this blog. Email me directly for more information) and work up the global ladder of desirable locations that way. No one starts out by moving to Paris.

I’m okay with that (actually, I am really psyched about it) but I want to have a job wherever we live. I want a career that is instantly useful wherever we go – not a career where the local expat community feels it has to create a job for me somewhere. A doctorate is not that kind of useful.

I cannot wait to grow my career in ways that will serve others and glorify God. And while I have no doubt that there are a TON OF RESEARCHERS out there that do EXACTLY that, and that my pursuit of a doctorate in no way precludes that from happening, I feel at this point in time that the best thing I can do is my current plan. That’s just the right decision for ME, right now.

4) Kids.

Our goals right now are to be the best potential parents we can be. We don’t have a kid yet, but we are working on it, and frankly, I have done more research on adoption, child development, attachment, and parenting than anyone I know in real life (and, from reading lots of adoption blogs, more than a lot of adoptive parents. I tend to only read the ones that candidly share their experiences and have clearly done a lot of research, but like anything, there are quite a range of parenting practices out there.)

I care deeply about our future children. I pray for them. I pray for the biological mother of our adopted children, should we be fortunate to have them. I pray for the health of our biological children, should we be fortunate to have them.

I have spent a really, really, really long time thinking about how I want to raise our kids and what my role will be in this process.

I think that’s why I’m so shocked by Sarah Palin (and in this I am talking about her parenting practices, not her policy platforms, which are laughable and scary and are beyond the scope of this post): I’ve always said that it doesn’t matter what kind of job I have or if I’m presented with the job of my dreams. If my kids or my husband need me, I will drop that job – that path – in a heartbeat. Jobs are jobs. Family, on the other hand: we are covenant-bound by God to care for each other. DB feels the same way. We do our best to manage concomittent family and career identities, but if life presents us with something we did not plan for, we alter our plans.

We have a significant risk, as I’ve stated umpteen times before, of having a child with special needs. That’s not complaining; that’s just fact. And I’ve said to DB several times in this process – way, way, way before Sarah Palin’s name ever became a household word – that the moment we learn that our child has a special need, I will quit my job or put my academic career on hold. I have the background to help our child at home, and I will never forgive myself if my child did not realize his true God-given potential because his mother was too busy working.

Of COURSE DB could play that role. But my background is in working with kids with special needs. His isn’t. And his job is a career without the option to take a leave of absence, and once he leaves, that’s it – no returning. So which one of us is going to be the primary caregiver? It sure isn’t going to be someone NOT us unless we decide that’s what’s best for our CHILD.

All of that to say that I haven’t decided fully about medical school. What I have decided, however, is that a research degree – THIS research degree – is not for me. I am taking one more class to fulfill the master’s degree requirements and leaving the program skipping and jumping. I am going to fulfill the prereq requirements for medical school and for a genetic counselor program, because really, my passions and heart are in that field, too. But right now, my efforts are going to be in doing well in school and pursuing the expansion of our family, cause WOW are we in need of a little human.

And bashing the GOP, which is a role I so very much love. (And I used to WORK FOR THE GOP, albeit in high school, but I was one of those little people wearing blue suits and I did it for a whole year, so I think that gives me a little bit more credibility. Does it?)

**My next post will be shorter and will be about scripture and my views on reproductive health. I am sure it will be foreign to 98% of you. However, I think it might help to understand Christianity a little bit, and I’m sorry it wasn’t what I wrote or published tonight. I’d encourage you to read it, if only to realize where you can critique the Christian Right using something other than science or emotion.

And if you’re part of the Christian Right, I’d also encourage you to read it, only because you can comment and tell me how I’m wrong! (Nicely, of course!)

Making decisions

(I just vomited a little in my mouth.)

D-day is rapidly approaching. Decision day. And I am really, really, really conflicted.

So I’m not sure how much I can share with the internet. Most of this will probably have to be password-protected, because a lot of my debate is location-specific, and I just. don’t. know. Aagh.

But on the first pass, sans password…

If you have been reading my blog a little bit, you will probably have noticed (because for 3 months, it was all I could write about) that I took a few hard-science classes this summer: gen chem 2 (which was, frankly, the most hellacious class ever) and organic chem (the whole year). I managed to fit them both in roughly sequentially by taking them at different universities.

In general, there are very few reasons for an old person (me, and yes, 29 is old in this arena) to take these classes: either s/he is crazy, or s/he wants to become a vet/dentist/physician. Hopefully, I’d fall into this last category (not crazy) who wants to become a physician.

However, last fall, I finally started – after a three-year hiatus doing various types of clinical research, including research on autism (as you will see from some of my opinions previously – really, my whole resume is in the categories on the left <—-) a doctorate. A research doctorate. At a fairly prestigious university, although if you ask me IRL, I will do anything in my power to avoid identifying the school that I attend because I feel as though it’s not only prestigious, it’s pretentious. I realize if I stay there I need to get over myself, because I’m there, I’m getting a degree there, and I am spending a whole lot of time there. But that’s another discussion.

So with that background, here are my three options:

1) Stay with my program and pretend that the undergrads were all a really, really, really long, bad, dream inspired by my husband’s foray into a war zone;

2) Ditch my program (get a master’s degree), cling to the hope that is medical school, and complete the rest of my prereq requirements (bio and physics – no, seriously, I did not take a single science class in undergrad, unless you could “physics for athletes” (not what it’s called, but I certainly got to know the entire football team that way) or oceanography, aka the world’s second worst class (behind this gen chem class this summer)). Have a baby (by “have”, I mean either birth or adopt. The world of international adoption gets increasingly concerning, international governments are increasingly less excited about adopting to parents with chronic illness – no matter how minor – and although we are warming up to domestic adoption, we just….do not…know. But attempting to conceive is a source of stress all unto its own). Pursue medical school admission next fall, and attempt to matriculate at the ripe old age of 31.

(ouch.)

3) Ditch all higher education and – gasp – get a job. Actually, I will get a job this fall with either routes 2 or 3. The grants that fund my other jobs are drying up, which is probably good for my decision-making.

OK, so here are all the things I think about:

1) Kids. We want kids. We want kids bad. We are old (DB – mid-30s, I’ve mentioned my own far too many times at this point). We went to a pet store the other day, just because I haven’t seen a pet store that actually SELLS ANIMALS in the longest time (and I was appalled!) and there was a little mini schnauzer in there. He was SO CUTE! And I have never seen DB so smitten by a living thing before.

This, to highlight that we really. want. another. dependent. Preferably one with two legs, versus four (it can have four temporarily).

(We didn’t get the puppy. We would never do that. Pet stores = SO BAD!)

2) Kids, but I wanted a new bullet point.

Trying to conceive and staying in my program would be a major challenge with the impending written exam in May…given my health issues and the potential for things that would preclude my ability to sit for that exam on THOSE DATES (and if I miss THOSE DATES, I need to wait another year!) Adopting – well, I guess with adopting the biggest concern is the finances. We want to be able to afford adoption and with DB’s current salary and option 1 (staying in my program), it will be really, really tough. Plus, we would probably adopt a child with some special needs, which would increase the expected cost of caring for the child (plus, let’s face it – kids are crazy expensive).

Kids, part 3: caring for them.

We run the significant chance (I won’t say risk) of having a special needs child, either a biological child on the autism spectrum or a child with other needs by adoption (and as someone who strongly believes in attachment parenting, we expect even a “typical” child who joins our family through adoption have some adjustment.  Adoption is a loss, and we understand that…so while that seems not relevant, actually, it is).  I want us to be able to provide for our children’s needs, both financially (in terms of services and care) and emotionally – and if that requires me to stay home with them, so be it. I’ll be honest: I’d rather work at this point than stay home with our children – I’d rather have that balance – but if we have a child with special needs, I do not know that I’d trust another caregiver to deal with meltdowns and picky eating.  I am a little bit of a control freak.

3) Money. Oh, money. So here are the facts with money:

a) Until I take that written exam, I cannot get more money for my degree. So delaying it by a year has incredible impact, beyond what it would be in any other doctoral degree program.
b) DB cannot take a second job because the FBI prohibits him from working a second job. I will not get started on this particular rant here, but let’s suffice it to say that the federal government does not pay that well BUT the burden of making enough to do things like adopt (which is admittedly expensive) lies with me, his intrepid and hardworking spouse with two part-time jobs and full-time school. (Just saying.)
c) Med school is a LOT CHEAPER than this degree.
d) Oh how nice it would be to have a salary for the next two years! (Option 2 and 3)
e) (In little font) I would make more money as a physician than a researcher. (Emphasize little font!)

4) Jobs:

a) I have been doing research for the last 5 years in three different topics and with 3 different functions. I have designed studies, created protocols, written assessments, administered assessments, and analyzed data. Oh, yeah, and I’ve written grants.

I would rather eat worms than commit to research for my entire life.

I have a clinical degree! It is not one that inspires a lot of confidence in my abilities, but I have one! And I never pictured myself doing research for my life’s work. Yet – somehow – I am getting a research degree. (Does that make you think? It makes me think to write that.

b) I COULD use my Ph.D. to do consulting or policy work. However, my policy professor told me that I should leave the program and pursue a degree that is more likely to make change in the world – law or medicine. I respect this professor immensely and I don’t think that she would want to know that this is how I’m interpreting her thoughts – but at the same time, it gives me pause for thought.

c) I love clinical work. If I had to commit to one or another – analysis or clinical work – it would be clinical work, hands down. But I could do clinical stuff now without another degree at all.

d) I would like a job that allows me to do clinical work AND research if I choose (that would be medicine, or option 3, and probably less so option 1, because once you have this degree you are pretty much pigeon-holed).

5) The Bureau: Yes, it gets its own bullet. Because it has its own effects on my (yes, my) career choices.

We are required to move anywhere they want us to. Which could really be an issue for, oh, say, RESIDENCY.

DB and I want to live together for our marriage.

I cannot pursue a tenure-track position because what’s the point? -if we move. Plus, um, I just vomited a little in my mouth again. So now we know what I think about that.

I need to make enough money to support our needs in conjunction with what they pay DB. This means I would like a career where I can move anywhere and become instantly useful. There aren’t many of those careers around. (FWIW, I always tell DB that the best job for me would be a preschool teacher or a nurse. If only I liked preschoolers more…but nursing has not been eliminated yet.)

We want to live overseas. We can do this with the Bureau but requires some strategic moves by us (now).

6) What I really want: A job that contributes to the greater good of society, pays well, allows me to take time off to parent, expects a lot of me (has high expectations of me), allows me to grow as a person, lets me continue to learn. A job that (ok, nonChristians, avert your eyes) glorifies God. (A few years ago Wheaten College – which is a fairly conservative Christian college – was looking for coaches for the sport I used to do, and stated, “looking for those who ______ for the glory of God.” I thought that was the most hokey thing I’d ever seen.)

That’s all. So now that I’ve written all of that out, I am not one bit closer to making a decision. I wish I had more time, but somehow I do not think that more time would help me much.

Thoughts? I know a lot of you have significant others in medicine, or are in medicine yourselves…or do research…anyone? Or want to recommend a really inspiring movie that will help me get motivated to make a decision?

The other thing is….I read my musings from oh, say, May, when I was finishing up the second semester of the doctorate, and realize what I need to do. I just need to have the stomach to do it. So hopefully this long, boring post will serve the same function when I flunk physics and start wondering, “what, oh what, did I DO?!?”

Blech, that vomit taste. Going to wash the dog now. Woot!

Other people’s thoughts…

…are more interesting than my own, especially these days (ok, pretty much all the time).

I read a smattering of random people’s blogs about the various things I’m interested in:  adoption from various places, pregnancy, raising a multicultural family, being a birthparent, being an adoptee, going to med school as an old(er) student, topics related to having a child on the autism spectrum, being a mid-term missionary in a foreign country (those are people I know personally, and they’re linked on the side of the page).  Honestly, most of those people do not even know that I read their blogs, but occasionally I surface and leave a comment.  Some of them do know who I am, though, because I’ve emailed them to tell them I’m reading about their lives.  It makes me feel less creepy, although I’ve kind of come to realize that having a blog means that random people read your thoughts, and other people who have a blog already know that, so they generally don’t care that there are random lurkers reading their thoughts.  ANYway.  So I lurk.

A few of the blogs I read recently posted items that fall under the category of “things I perseverate about for the bulk of my day”.  I wrote a post about my big news of the day already, but I will share that tomorrow after I edit it.  In the meantime, here are some interesting links:

1)  Laura’s post from last night questioned why adoption as the primary route of family building was so confusing for people – she has been fielding questions about why she and her husband choose to build their family though international adoption without first trying to conceive a biological child.  Given my constant vacillation between euphoria and guilt over pregnancy, and the strong tug toward adoption with the gnawing worry of the money required to complete it, I found her post fascinating.

2)  Can women have it all – career, kids?  How?  Laurie’s posts (there are two – the most recent two, at this moment) ask for feedback from her (many, many) readers and there are some really interesting comments (not mine – mine is really dumb) about women’s experiences.  Laurie graduated from medical school recently, adopted two adorable boys from Vietnam and gave birth to a beautiful daughter a few months ago, and she’s trying to make some decisions about residencies as her husband makes his way through med school, too.  (I find this blog fascinating for so many reasons, actually.)  Anyway, Laurie’s post is really interesting and it brings up a lot of my own insecurities and neuroses about how we will manage to raise our children given my personal beliefs about what kids need and my personal goals that apparently mean I will never be home.  (I have some more thinking to do about that.)

3)  This isn’t a blog, but the Washington Post’s article on the etiology of autism spectrum disorders is a must-read for everyone who is involved in a baby or toddler group (because those baby and toddler groups invariably has someone from the anti-vaccination league willing to spread false information about the connection between vaccines and autism.  And if you want slightly more information about that, you can email me for the password to my autism post).  At some point, I will compile the literature on this topic and post it in a blog post (check back in August when I have time) but suffice it to say in the meantime that vaccines do not cause autism.

**Note:  Washington Post article refers to children as “autistic”.  Please consider yourself warned about this phrasing.  I am not a stickler for terminology – except in this case.  Children have autism, or children are on the autism spectrum, or children have depression – children are not “autistic”, or “depressed” or “epileptic”.

Off of soapbox.  Have a good night!

Protected: On autism spectrum disorders, part I

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