Scientific Travel

This week I’ve been attending a scientific meeting.  It’s been a very good meeting both in terms of the things shown and discussed, and in terms of the networking opportunities and collaborative conversations I have had.  But it’s brought to the forefront of my mind the issue of travel when I have an autistic toddler.

I try to reduce how many meetings I go to every year, because it’s always hard on my daughter and husband.  This year, it’ll end up being 3 meetings, all of which will be 1 week or less.  At least in my field, this is fairly low.  An informal survey of colleagues gave numbers in the range of 3-6 trips/year, with some of those being multi-week long workshops or scientific expeditions.

Meeting travel is fundamental to my job in a few ways.  It’s key to keeping up with the current research, to getting my own research out there, and to building and maintaining collaborative relationships.  Reputation really matters in science, especially as I contemplate going up for tenure in a few years.  And reputation is largely built at meetings.  Meetings are also the place where I get to concentrate on just science for a few intense days.  95% or more of my original scientific ideas come to me during meetings as I absorb other people’s results and have in-depth scientific conversations.  I always come home re-invigorated and excited to do new research.

On the personal front though, it’s difficult.  People sometimes to say to me “just bring your husband and daughter along with you!”  Some people do this, and in fact, we did try it once.  But as anyone with a kid knows, travel with your kid is hard.  Travel with an autistic kid is really really hard.  She can’t sleep in strange spaces.  She melts down in loud, crowded environments.  She stops eating pretty much entirely when she travels.  It’s bad enough that we’ve contemplated refusing to travel with her at all, even to visit relatives.  So bringing the kiddo is not an option.  At home, she and daddy get along OK without me for a few days.  But of course it’s much harder on daddy doing it all by himself.  And for the first day or two, there are usually more meltdowns and more defiance as she realizes mommy isn’t around.

So there is a clear personal-professional tension that comes up every time there’s a meeting in my field.  Like all things, it’s about priorities and balance.  I do wonder if meeting travel will get easier (ha) or harder (probably) as my kiddo gets older.  If any readers out there have any advice or personal experiences balancing these issues, I would love to hear it.

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Letting the diagnosis sink in

Even though my daughter was diagnosed with autism almost 8 months ago, I find that I am still processing the news.  Despite creating this blog, and despite the post I wrote for Break the Parenting Mold in which I complained about others trying to convince me my daughter doesn’t have autism, I sometimes doubt the diagnosis myself.  Sometimes I think maybe she really isn’t autistic, that she’s just a late bloomer, and it’s all a mistake.  Or that she’ll be one of those kids with “optimal outcomes” who lose the autism diagnosis.   After all, she has made huge strides since beginning intensive ABA, and her therapists say she is the fastest learner they have ever seen.  I’ve had doctors comment that she is “clearly very intelligent.”

But inevitably, just as I’m thinking that maybe my child doesn’t have autism but is really just a smart late bloomer, something reminds me that she is in fact autistic.  She might start rocking back and forth or flapping her hands in excitement, or refuse to respond to her name, or refuse to get out of the car in the driveway when we usually do that in the garage, or insist her milk is served correctly or there will be a major meltdown.  (It’s often unclear to me what’s incorrect about the milk being served, leading to a frustrated, super mad toddler screaming at me and throwing the milk, and a confused mommy knowing that she in fact really does want it, and trying different ways of serving it until one works.  Most recently, the thing that worked was putting the milk in the lowest part of the fridge door and leaving the fridge open so she could get it.)

So my daughter has autism, and probably always will.  Therapy has certainly been a huge help, but her stimming behaviors are still prominent, she still has problems with social interaction, she still melts down when routines are changed.

I think a lot of the difficulty in processing the diagnosis is confusion over what it really means to begin with.  I’ve read the DSM-V definition, and my daughter certainly fits.  But what really is autism, other than just some checklist?  Autism is different for everyone so generalized descriptions are hard.  Because of that it’s easy to wonder if there really even is a definition, if it’s even really a “thing.”  It’s difficult to wrap my mind around what this diagnosis actually means in terms of what my child experiences, how to best parent her, and what her long-term outlook looks like.  The parenting one is especially hard, because we are first time parents and there’s no book for autistic parenting.  Or rather, there are plenty of books, but as every case of autism is different, they aren’t necessarily applicable to us.  I wonder if my guesses about what the best parenting methods are might make the difference between a child prodigy and someone who needs round the clock care as an adult.  I am at once grateful to live in a time when autism is recognized and some effective treatments are available, but also disappointed that there isn’t more progress in explaining autism, wider variety of treatments available, and more knowledge about how to tailor treatments to specific children.

I suspect I’ll still be processing the diagnosis and figuring out what autism really means for my family for a while to come.

Maternity Leave

As I mentioned in a previous post, my husband and I are thinking of having a second child.  It’s been coming up in conversation between us more and more lately, and we’ve both caught ourselves aww-ing over stranger’s babies a lot.  We even have an extra bedroom in our home that we refer to as the nursery or the “baby’s room” in anticipation of baby #2.  For various personal and professional reasons we aren’t planning to get pregnant until early 2017, but clearly we are thinking about it a lot.

On Friday I was discussing this a bit with a colleague and friend, who is also currently the only other female professor in my department.  I realized that since she doesn’t have kids, there was a good chance this department has never had a faculty member be pregnant and take maternity leave.  There have been other female faculty members in the past, but none was here more than a few years.  So I asked and yup, if I become pregnant it will be a department first.  There have been female grad students who had babies, but not faculty.

I don’t expect any issues surrounding this however.  The university has a good maternity leave policy for faculty, and our current department head is very supportive of work-family balance issues.  I am entitled to 12 weeks paid leave, and knowing my colleagues I don’t think anyone would really complain about it.  But it’s strange to think I would be something of a trailblazer just for having a baby.  Newsflash to science departments: young women can be science professors AND have babies too.

I already went through this with my first baby. I was a postdoc, one of very few women in that department.  They had never had a pregnant postdoc before.  I had a prestigious postdoctoral fellowship paid from an endowed fund.  I caused some headaches for the department and many meetings of committee that was in charge of the fund, which included the department head, just to discuss how to handle my case.  It apparently had never occurred to anyone that a postdoc brought in under this fund might become, gasppregnant!  In the end they decided to give me up to 4 months unpaid leave, since by university policy they had to.  Then they suggested I use my short-term disability insurance in order to get 55% pay for 6 weeks, and suggested I could take my 4 weeks of combined vacation and sick leave (paid at 100%) as well.  So no real maternity leave, but it was something anyway.  Luckily my postdoc advisor was also very understanding and supportive, and really didn’t mind if I needed to take a little bit of extra time off here and there.

All-in-all, my experiences haven’t been that bad.  Certainly it could have been much worse and likely is for many academic women.  But it’s just a bit mind-boggling that just having children causes me to set a bunch of new precedents within my departments.  Being a trailblazer in this area was never my intention, but if I’m the first, so be it.  Hopefully my forcing these departments to deal with this issue will help others who come along after me.

 

Probabilities

This post is going to be more philosophical.  I’ve been thinking a lot lately about probabilities and how it seems like a lot of events with a probability of roughly 1-3% keep happening.  For example, my daughter was born early due to PPROM (preterm premature rupture of membranes; my water broke at 33.5 weeks).  I had no risk factors or warning signs for this, making my risk for sudden PPROM roughly 2%.

My daughter has autism.  We have absolutely no family history of autism, and she is a girl (autism is much more common in boys).  The probability that she would have autism given this profile is roughly 1%.

A few other things I don’t want to write about have also happened recently with similar nominal odds attached to them.  It’s made me think that it isn’t so crazy to worry about things that have a 1% chance of occurring, since in my experience plenty of them occur.  A 99% chance no longer seems like a sure thing.

I realized though that we all take many, many 1% or less gambles every day and usually we win, meaning usually we are in the 99% (about, say, 99% of the time!).  Once I started thinking about all the thing that could have happened but didn’t, I realized that maybe it’s not that strange that I “lost” two 1-3% chances.  After all, there is probably at least a 1% chance that I would get in a car accident sometime in the last year.  Didn’t happen.  Many other pregnancy complications that didn’t happen to me had 1% or higher chances of occurring.  There’s probably a roughly 1-3% chance that my husband or I would have developed cancer by this time in our lives, and that hasn’t happened.

For every real-life gamble lost, every disaster or bad diagnosis, there are many more gambles won and disasters averted.  When something bad happens, it’s easy to ask “why me?” but maybe it’s better to remember the things that didn’t happen instead.  For every 100 1% chances you take, you should expect to lose one.  Most of the 1% chances we take we don’t even realize we’re taking, so it always seems like a shock when that 1% thing happens to us.  But we all have to lose sometime.  Really, these things should come as a shock, because if we spent all our time anticipating all the 1% gambles we could lose we’d all go crazy.  I guess we just have to expect the occasional shock in life.

When I look at things this way, having PPROM and a chid with high-functioning autism seems pretty good, compared to all the other disasters that could have happened.

Stimming

Stimming is autism terminology for self-stimulatory behavior, or anything that autistic people do to stimulate the senses that they find soothing or enjoyable.

My daughter has a number of stimming behaviors that we see on a daily basis.  For example, she often spins in circles reciting the alphabet, or bounces up and down on her heels while counting.  When excited, she rocks back and forth rapidly.  When sitting down, it looks like she is energetically rowing an invisible boat.

My husband and I very much subscribe to the idea that stimming is not to be discouraged, but rather accepted as part of who our daughter is and even celebrated.  Stimming helps her calm down when she is bombarded with too much sensory input.  A common misconception about ABA therapy is that the therapists will punish or prevent stimming, but our experience has been that the therapists accept and wait out stimming behaviors.  Her therapy team is completely on board with our attitude.

The exception to the rule is when stimming becomes self-harming, which is unfortunately common.  In my daughter’s case, she used to bang her head against the wall when she was tired.  We did discourage that behavior and it has since naturally stopped.  In the past few weeks, a new behavior has emerged.  She now smacks herself in the face, usually in the forehead area.  She even leans into the hits.  I am torn about this, because she doesn’t seem to be causing any viable damage (skin looks normal) and I doubt she is hitting herself hard enough to cause any internal injury.  But if I allow this to continue, who knows what it might turn into, plus it’s just disturbing to see your child repeatedly hit themselves.  She also has a very high pain tolerance, seeming to not even notice falls and scrapes that would have other toddlers bawling, so I worry she may hurt herself and not notice.  I’m going to ask her doctor about this at her next appointment, but it’s a month away.

Kiddo also enjoys makes lines out her toys, like many autistic children.  I’m not sure if this counts as stimming but I’m including it here because she made some nice lines this weekend and I thought it was cute.  Notice how the boats have been given their own line, and all the airplanes are sorted out in a pile at the back.

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Keeping it all going

No one expects that being a professor and a mom to an autistic toddler is easy.  It really isn’t, but not always in the ways people might expect.

Caring for the autistic kid is actually probably easier than most people think, at least in our case.  Our daughter is very high functioning, and other than some sensory related meltdowns, is a fairly happy kid.  She gets frustrated when she can’t communicate something she wants, but so does every toddler.  In fact, every weekday evening from 5:30-7:00 PM we have our ABA implementers around to help out.  Lately kiddo has wanted to do her ABA therapy in her basement playroom – which is wonderful.  She and the implementer stay down there and husband and I can make dinner and eat together in peace.  This is a recent development, it used to be that kiddo was constantly running away from therapy to me and demanding to be picked up.  So things on that front have gotten easier.

On the work front, it’s summer, so that means no teaching at the moment.  But stress levels are still very high.  As my mother keeps reminding me, I have a proposal deadline coming up. Seriously, when do parents stop nagging you about homework?  Apparently not when you become a professor, at least in my case.  Note to other profs: Do not tell your parents about impending proposal deadlines.  I don’t know why I ever did.

Of course I also have to prep my fall class, get a paper out, advise a student, and a few other things.  Oh, and I’ve recently had my own health scare that is most likely nothing, but has resulted in me having a TON of doctor’s appointments and tests.  Last week I had a cardiologist appointment, a kidney ultrasound, and a cardiac MRI, all of which showed me to be perfectly healthy.  But it’s an extra drain on my time and stress levels, and the docs want me to do more tests, ugh.

So with all this, it shouldn’t come as much of a surprise that some things slip through the cracks occasionally.  This week, I managed to annoy the front office staff of my department because I was supposed to sign a form by a specific date and I went to sign it the day after the deadline.  The deadline was pretty much the same day we got the forms because of the end of the fiscal year.  Apparently they were looking for me on Tuesday to get this signature, but I had some other stuff to take care of on Tuesday and wasn’t around.  So when I talked to them on Wednesday I got comments like “No one ever knows where you are, you’re not around.”  And other annoyed comments.  At first I was embarrassed but then I realized a few things: 1) I’m a professor.  I don’t work for or report to the office staff.  and 2) It’s summer, which means the university isn’t paying me for my time.  Many people may not know this, but professors actually aren’t paid for the summer months unless we find our own money through grants.  So I feel like they can’t really fault me for not being around for a day, after all, I’m still working for the university over the summer without pay from them.  (I did have 1 month of pay from a grant, but 2 months are completely unpaid for me).

Perhaps part of the problem is imposter syndrome, and I certainly have some of that.  It probably doesn’t help that I am female and younger than both of our front office employees, by a decent margin.  In fact I’m younger than some of the graduate students, which can make it a bit awkward if I try to exercise my professorial authority.  Also, I am someone who is very easily embarrassed and I suffer from a high level of anxiety, for which I take medication but it’s still a problem for me.  So for now, as silly as it is, I’m avoiding the front office completely.

 

Milestones

Milestones are a funny thing, especially when you have a child with autism.  My daughter’s first two syllable word was “seven.”  She said that before she called me mama.  Her first three syllable word? “Eleven.”

It should come as no surprise that I’ve thrown most of the typical child development milestones out the window.  Or at least, I’ve tried to.  The advice parents of children with autism or other conditions often receive is to compare your child to themselves and not other children or lists of milestones.  This advice helps me see my own child’s progress, but of course, I can’t entirely ignore how her peers are developing.  It can be very difficult seeing her next to typically developing children, especially in the realm of language.

My daughter’s language abilities are her most severe delay.  About 7 months ago she had a developmental assessment as part of the process of enrolling her in the state early intervention program.  In our state, these assessments assign an equivalent age to each child’s skills in a few areas, and a child qualifies for services if their equivalent developmental age in at least one key area is less than half of their chronological age.  At the time of her assessment, she was 20 months old.  Her language skills were that of a 4 month old.  Our coordinator said it was possibly the most significant language delay she’d ever seen.  I still remember listing to the voicemail over the car speakers with my husband as we drove to visit relatives for Christmas.  We sat in silence at first, and then I voiced how scared I was for our daughter.  My husband tried to reassure me, but was plainly scared as well.

Today she is talking some.  It’s unclear how much credit goes to therapy and how much to just the passage of time, but I really believe the therapy has helped a lot.  Her speech is coming along at a faster rate than anyone expected, and she’s closing the gap but still has a fair amount of catching up to do.  Once she started talking, she absorbed new labels with hyper-speed.  For concrete concepts, like the names of objects, she only needs to be told once or maybe twice and she’s got it.  She learned the alphabet (not the song, but how to identify the symbols for every letter) in about an hour, and she quickly learned to count to 10 and then 20.  More abstract or social concepts, like requesting, or saying “hi” and “bye,” or communicating feelings are more difficult.  She has a few requests but we’re still working on the rest.

About 2 weeks ago we hit what is for me her biggest milestone to date, and I didn’t even see it coming.  One day after speech therapy I was kissing her face, as I often do, and it seemed like she puckered up and kissed back.  Surprised, I asked her to kiss me again.  Unmistakably, she puckered her lips and planted a big kiss on my lips, complete with a “muah” sound.  Since then, she has given kisses upon request to daddy, grandparents, an uncle, and even some of her therapists.  She doesn’t always kiss when asked, just if she wants to, and she does sometimes give kisses unprompted.  I checked with all of her therapists, and no one taught this to her.  She just picked up on kissing as a form of showing affection all on her own.  I’ve honestly never been prouder of her.

Making friends as an autistic toddler

My daughter made a new friend!  Well, more accurately, my husband and I made new friends who also have a 2-year old daughter.  We went to their house over the weekend and by the end, their daughter declared our daughter her friend.  She also gave her hugs and comforted her when she cried.  It was adorable.

It made me quite a bit sad because my daughter doesn’t comfort people, or give hugs to other kids, or have the language or understanding to declare someone else her friend.  But, she did interact with the other girl so I guess I should take that as a good sign.  The awkward part for me was that the parents were also new friends.  The challenge is: at what point do I mention the ASD?  I fear that if I don’t mention it, people will notice that my kid is different and maybe think I’m a bad parent.  If I do, we may lose out on opportunities for play dates because other parents, consciously or subconsciously, don’t think our daughter will be a good playmate.  Also, the ASD diagnosis and therapies are a huge part of our lives as parents that we want to talk to other parents about.

In the end I mentioned it to explain my daughter’s behavior and lack of language when I felt it was noticeable to the other parents.  As it turned out, they had not noticed and would not have guessed.  They seemed a bit surprised that she has an official diagnosis at such a young age, probably in part because her symptoms aren’t that obvious, apart for the speech delay.  She stims, she has restricted interests and sensory issues, and gets mad if things aren’t in their proper places.  But none of that is particularly obvious at first glance.  Autism really is an invisible condition in many ways.

Thankfully, our new friends did not seem to care at all about the ASD label, and would like the girls to play together again.  Hooray for new friends!

First Summer as Faculty!

I’ve been making mostly Autism related posts at this blog, so it’s time for an academia oriented post.

The academic year ended officially about two week ago.  That’s when I turned in final grades for my class, and the summer finally began.  I took off a few days to decompress and switch gears.  My final exam was given at the end of finals week, leaving me not much time to grade all 47 exams by hand, including a few math problems and short answer questions.  It was brutal and I needed a break afterward!

Now I’m trying to pivot into “summer mode.”  The first thing on my summer docket was a proposal deadline, and now that’s done.  Next I have a paper draft from my postdoc work that I need to revise, add some figures to, and send to co-authors so we can hopefully submit it.  I also need to conduct some new research and prep for next fall, when I’ll be teaching a more advanced class I have never taught before.  So I have a lot to do, but so far, I’m having trouble being motivated to do it.  Partially the lack of a set schedule revolving around teaching is weird getting used to again, and also partially just being in my office all day alone is lonely!

Despite those complaints, I am happy summer is here.  Stress levels are lower, parking on campus is easier, the weather is warmer, and I can concentrate on more interesting science.  And, I am lucky in that I actually have a funded grant which will give me 1 month of summer pay.  That does mean that officially, I’m “unpaid” for two months this summer, although obviously I will still need to work during that time.  I have chosen to take my 9-month salary over 12 months, so getting that 1 month of summer pay feels like a “bonus.”  It also means that at least in theory, for the designated month I am supposed to work on nothing but that project.  In practice, I suspect I will need to work on other things a bit during that time, and I suspect I will work on the paid project during other summer months.

Having just submitted one grant proposal, I am now debating with myself whether to try to submit another for an early July deadline.  That isn’t a ton of time, and the program I am thinking of (NSF’s CAREER program) has a low probability of funding me on my first round, but a high payoff it I am funded (roughly $500,000 over 5 years).  Ordinarily I would tell myself to do it and not expect to get the money, on the argument that I could use the feedback to make my application better next time.  But as far as I know, this year is the last year for the CAREER program, meaning there won’t be a second shot.  So I’m debating whether the effort is worth it or not.  Any advice welcome.