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.

Equine Therapy for autism?

I just signed kiddo up for an equine therapy program.  Since she’s only 2, she’ll start with a 30 minute class specifically for children ages 2-5 with disabilities.  If she sticks with it she can eventually move to a 60 minute class.  The horseback riding location is 15 minutes from her preschool and 20 minutes from home, so she’ll spend at least at much time in the car as she spends actually there, and more than she spends on the horse.  Luckily, Grandma has agreed to do the driving for this!

Last October, we took her to a pumpkin patch where she did a pony ride.  The pony merely walked slowly in a circle, but she was terrified.  She screamed the entire time.  That was more than 6 months ago, and since then, she has successfully pet mules without any issue (but hasn’t ridden anything).  I discussed this concern with the director of the equine therapy program, who told me that children are often terrified on their first or second time out, especially those with ASD because it’s such a new experience.  But typically by the third time they are enjoying themselves and opening up.

The whole idea seems a bit silly to me.  It feels like one of the quackery therapies for autism of which there are so many.  But intellectually I know that multiple studies have found a benefit from equine therapy for those with ASD.  (Here are links to two such studies: Study 1 Study 2).  So we’re going to give it a try.  Additionally, in our county we are eligible to receive some funding from a local government program that will pay for our equine therapy fees, making it completely free for us.

Has anyone in the wordpress world tried equine therapy, also called therapeutic horseback riding or hippotherapy for autism?  I would love to hear your experiences.

Having a second kid after one with ASD?

Kiddo’s genetic test results are back.  A DNA microarray showed no copy number variation (CNV) abnormalities, meaning she does not have additions or deletions of large chunks of DNA in her genes.  The test for Fragile-X also came back negative.  However, there are other types of mutations, for example point mutations of a single nucleotide, that would be missed by these tests.  After all, the heritability of Autism Spectrum Disorder is known to be over 70%, whereas these genetic tests only show abnormalities in less than 20% of people with ASD.

These tests, along with the fact that kiddo is over 2 years old now, have me thinking about adding another child to our family.  We currently only have the one.  We always planned on at least two children, and with the ASD diagnosis, I think it’s particularly important that kiddo have a sibling for socialization reasons.  But, my concerns relating to having another child are twofold: (1) Will he/she have ASD? and (2) Where will we find the time?!

Regarding (1), it’s not that I particularly mind having another child with ASD.  I love our first kiddo to pieces, partly because she is different and has her own way of doing things.  But kids with ASD require extra support, and in particular extra time (so see discussion of (2) below).  Also, our first kiddo’s ASD is “high-functioning” and in fact it seems she may be really smart!  What if our second kid has low functioning ASD?  In that case the new sibling may not help in socializing the first kiddo, and may require even more support than she does.  Since the genetic tests kiddo #1 had turned up nothing, we have no information on what the odds of having another ASD kid are (except for the general statistic that says the sibling concordance rate for ASD is 20%).

Regarding (2), our lives are already packed full with very little free time (see my previous post about therapy at home).  And my professional life is only going to get more busy as I approach tenure.  It’s hard to imagine how a new baby would fit into the picture.  I find myself questioning whether a second kid is really a selfish thing to do, since the competing interests of both kids may mean both have some needs neglected.

Our vague plan is to wait another 2-3 years.  At that time kiddo #1 will be 4-5 years old and entering kindergarten.  Hopefully she will need less therapeutic supports by then, allowing us to focus more attention on a new baby.  The downsides of waiting are of course a larger age gap means they will socialize together less, and kiddo #1 may feel more jealous of the baby after being an only child for so long.

I would love some comments from other people about sibling dynamics in their families with ASD.  What worked?  What didn’t?  Were the parents spread too thin?