Happy News of the Day

I almost cried on my way to work today because of a story I heard on the radio.  Not about something terrible going on in the world, although there’s plenty of that. No, the story that brought tears to my eyes was about Sesame Street.  Yes, that Sesame Street.

Sesame Street has added a new muppet to the permanent cast, something that doesn’t happen all that often.  The new character is a girl muppet with autism named Julia, who is portrayed as about 4 years old.  She has many of the same characteristics my daughter has, including hand-flapping, echolalia, and other characters have some difficulty getting her attention (for example, they say her name multiple times).  And they made her a GIRL! Most people with autism are male, and while they might not be as happy as I am about this, the idea of having a girl character with autism is just great for my daughter.

More important than the fact that my daughter will now have a muppet on sesame street just like her is the fact that the other kids in her class will see it too.  The show is going to model how to treat children with autism using the new muppet, modeling inclusion and acceptance of typical autism differences.  So I hope this will encourage other children not to make fun of my daughter and children like her, and demystify autism a bit for everyone.

New episodes of Sesame Street featuring Julia will be out in April, and of course my daughter will watch them.  For more info, see the print version of the radio story I heard here: http://www.npr.org/2017/03/20/520577117/julia-a-muppet-with-autism-joins-the-cast-of-sesame-street.

Dear Autism Intervention Providers: Women work now

As I’ve mentioned before, the big Three-Oh (3.0 years old, that is) is approaching quickly for my kiddo with autism.  She’s aging out of the state early intervention program.  We recently discovered something about every program for 3-5 year olds with autism in our area: they are designed for stay-at-home parents.  Has the autism community not gotten the memo that women have joined the workforce now?  Working parents need quality all day care for their children, autistic or not.  We’d be happy to pay a bit more for such a program if that were an option.  I’d love comments from anyone about whether things are similar where they live for care for children with autism in the 3-5 age bracket.  I really wonder whether this is because I live in a mid-size Midwestern town, and if things would be better in a major urban area by one of the coasts.

We thought we had a plan for the age 3 transition, but this week, we’ve realized our plan is untenable.  The original plan was: she’s eligible for early childhood special ed, essentially a part-time preschool run by the school district for special needs kids to get therapies and interventions.  This is typically 8:30-11:30 AM, Monday – Thursday (although not always, and we won’t know her specific placement for a few more days, about 2 weeks before her birthday).  This preschool program is run out a building on the far edge of town, nowhere near either of our commutes.  There is also a program run by the local Easter Seals chapter that does ABA with kids with autism, that is 12:30-3:30 PM, 5 days/week.  As you have probably already noticed, this means 1) someone needs to pick her up at 11:30, feed her lunch, and drive her to another location by 12:30.  Also, 2) someone needs to get her at 3:30 and care for her until her parents get home, and 3) Friday mornings have nothing.  Not great we thought, but hey, my mom is semi-retired (works part-time) and lives in town and is willing to help, so maybe this will work!

This week though we found out from Easter Seals that actually they can only do 2:30-4:30 MWF, and 12:30-3:30 on Thursday, and nothing on Tuesday (!!!!!).  Oh and the morning program from the school district doesn’t run at all over the summer.  This information made our plan go from merely very difficult to impossible.  Looking into other programs in our area, we found that there’s only one all-day preschool program geared towards kids with disabilities, which is not specifically for ASD kids and does not incorporate ABA.  And we’ve been on their waitlist since last November.  We hope to get in with them in August.  I also found 3 other programs that are similar the the two I described, 2-3 hours per day of ABA and/or speech therapy, 3-4 days/week.

So, new plan.  She’s currently in a “regular” all-day preschool environment, with therapists that come work with her there every day under the state early intervention program she is about to age out of.  But, we have lots of “make-up time” on the books, meaning every time someone cancelled because of illness or whatnot, we can have them “make-up” those sessions even after she turns 3.  So the floor won’t fall out for a few weeks yet.  But once her make-up time runs out, it’s the end of formal ABA, speech, and occupational therapies for her, and it means greatly reduced help at preschool, unless we come up with another plan.  Also, the preschool will need to “hold her back” because the 3-year-old room requires potty training, which she doesn’t yet have.  We’ve already privately hired one of her ABA implementers for part-time care, and we are partially reimbursed through a county program.  We can use this to keep this particular implementer on indefinitely, with some manageable cost to us, but without the BCBA who designs the ABA program.

All of this is super frustrating.  Why are we only being given important information 2 weeks before the big change over, despite being in touch with the relevant people since last December?  More than that, why are all these programs only 2 or 3 hours here and there?!  It seems like the only way to actually use these things is to have a stay-at-home parent.  None of this is designed for someone who works even part-time.  I literally feel forced to choose between my academic career, which I have worked really hard for my entire life, and getting the best interventions for my child with autism.  Not only is it not fair to ask myself or my husband to give up our jobs, we wouldn’t be able to afford our home without both incomes.  We could potentially do something really drastic, like have one of us quit our jobs (with greatly reduced earning potential forever as a result, we’re both early in our careers) and moving to a much more modest home (not that our home is particularly extravagant).  But we’re not going to.  We’re going to do the best we can with what we have, and hope that she’ll do OK.  We may or may not also do the morning preschool program, with attendant driving across town twice a day, depending on what we think when we finally get to see it.

 

Terrible policies

This week has for me been a week of frustration with policies that clearly don’t make any sense, and that make my situation even more difficult than it already is.

First, I’ve been periodically getting in touch with the university parking office since I started my job to ask for parking reassignment.  I have been assigned a spot in a parking garage that is about a 7 minute walk from my office.  Like most university garages, it seems to have been competing for a “most inefficient” design award, and it can easily take 10 minutes or more to wind up or down the darn thing.  And, the location of the garage adds about 5 blocks of congested downtown driving to my commute each way.

About half of the faculty and staff in my department have permits for the lot just outside our building, which I will call the good parking lot.  The university charges less for these permits than for my garage permit.  This week I complained a bit more loudly to the parking office, including pointing out that because I have a toddler with autism, I sometimes have to leave midday for appointments or urgent issues.  This time I was escalated to the head of university parking – who told me there is nothing they can do.  University policy assigns good parking lot permits based on seniority, and once assigned, they are never revoked.  If a faculty member retires, they can choose to keep their permit – at a retiree price of $24 per year, or essentially free.  We have two retirees in our department who sit on these permits and only use them very rarely – but with pricing like that, why give it up?  I’m 8th in seniority order for a permit currently, in a lot with something like 10 spots.  So I’ll be stuck paying a lot more to park in a ridiculously inconvenient garage while the retired professors get to park right next to the building on the rare occasions they chose to grace us with their presence.  What a wonderful university policy that is.

Second, Husband and I have been preparing for a while for our daughter to turn the big Three-Oh (3.0, that is) because she ages out of the state early intervention program and ages into the public school early childhood program.  The transition is going to bring a lot of changes and stress for all involved.  This week I learned that, like all public schools, the early childhood program that serves toddlers with disabilities is out of session during the summer.  And their summer, for some reason, begins May 8.  So she’ll start this program, be in it for 1.5 months, and then for 3.5 months she’ll get nothing.  No supports, no services, nada, and we’re on our own to arrange care for her.  What preschool wants to take an autistic toddler just for the summer?!  The early intervention program for children under 3 is year-round for obvious reasons, so I was genuinely surprised to learn that the public school program isn’t.  Does my child somehow magically not need autism services over the summer?!  It just doesn’t make sense to me.

 

Playing the A-card

When Husband and I find ourselves in social situations with our daughter, we often wonder if and when we should “play the a-card” as I put it.  That is, when is it better to tell people she has autism as a way of explaining strange behavior vs. not singling her out as different.  In the past I think I have been to quick to blurt out “she has autism” because I often get denials like “oh, she’s so young, how could you know that” or “she seems normal to me” (see my post on Breaking the Parenting Mold called “Stop Trying to Convince Me My Daughter Doesn’t have Autism”).  So now I try to hold my tongue, because I recognize that while her stimming behaviors or language delay or lack of social interaction may be obvious to me, it’s not always as obvious to others, and it’s usually better for everyone if people treat her like every other kid.  Most people write off her odd behaviors as just being a toddler.  It’s only after spending a lot of time with her that the differences become more obvious.

There’s also that look that I get when I say “she has autism.”  A look of pity and confusion, followed by other parents keeping their distance.  I’m willing to bet every parent of a kid with “special needs” knows that look.  Or, less commonly, “oh, my sibling/cousin/friend’s sibling has autism!”  followed usually by a description of how they function as an adult, ranging from “she lives in a group home, but seems to like it there” to “he made it through college and has a good job now.”

Sometimes though playing the A-card is necessary and can illicit help and understanding we might not otherwise get.  For example, we took our daughter to an event with bouncy houses.  She’s obsessed with her shoes and screams at taking them off, but wanted to get in a bouncy house.  The employee supervising said that kids had to take their shoes off, but when we tried she screamed and it was clear that removing her shoes was traumatic for her.  We explained that she is autistic and the employee kindly made an exception and allowed her in with shoes.

So readers (all 10ish of you?) when do you play the A-card for your kids/relatives, or for yourself if you are on the spectrum?  What results have you gotten?

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.

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, gasp, pregnant!  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.

 

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!