The Not Gettings and The Givens

Last night Maya asked me if she was going to get a Hanukkah present.  I asked her if she remembered what Leo and I told her the night before, that last night was the last night of Hanukkah which meant that Hanukkah was over and we would not light the Menorah again until next year when it was again Hanukkah which meant also that she would not get anymore Hanukkah presents.

When you have a kid on the autism spectrum, it is important to prepare them for these things.

Maya answered that yes, she remembered it was the last night of Hanukkah and then she asked again, would she get a Hanukkah present?  And I again gently explained to her that Hanukkah lasts for 8 nights and when it is over, we have to wait again for next year in order for it to be Hanukkah again.

"But mommy, I am a good girl, don't I get a Hanukkah present?"

Thud.

Now I could just write the whole incident off that my daughter is materialistic and is using Hanukkah in order to finagle gifts out of me.  I mean, seriously, what 8 year old doesn't want to have more gifts?  And I am sure there is a little bit of that in there.

But this is a perfect example of how difficult it can be for an autistic child to get a concept like this.

When I was a kid, I got it immediately.  It was a holiday, we got presents for 8 nights, actually we usually only got presents a on couple nights. My parents preferred the big bang over evolution when it came to Hanukkah, give all the presents on one night, and another night we got presents at our grandparents' house and other nights we got whatever presents trickled in from relatives which consisted of loads of $5 bills (don't snark, $5 was a cool amount of money back then).  But I can remember at the age of 5 knowing it lasted for 8 nights and when the menorah was full, the jig was up.

With Maya though, it is not always so clear, even if you prepare her.

Why?

Well I do think it has something to do with autism and the way her brain is wired.

The autistic mind is quite an empirical mind from what I can gather.  It believes what it can see and observe (if my Philosophy 101 definition of empirical serves me correctly, which is a big if).  It has a hard time with things which are conceptual and not visible, which is why things like sarcasm or irony are often confusing for autistic people.  I have a tough time with this sometimes with Maya, as I am often sarcastic and use irony a lot in conversation.  My go-to example of this is an exchange between Maya and I which used to happen often between us, which used to make me laugh myself silly.

Horsing around with Maya I would say, "Get off me man." and without missing a beat Maya would answer "I am not a man, I am a girl."

My point is that Maya accepts as fact what she can see and she takes things uber-literally

So when we go 8 nights giving presents she accepts that is the way it is and even though we have explained to her that Hanukkah is over she just got a present for the last 8 nights, her instinct tells her that she should get a present because for 8 nights she got one, it has become part of her routine and changing routines is something which is hard for Maya to grasp.  Her world makes sense if routines happen and it confuses her if they don't.  In many ways routines are how she defines her life and when they change, it throws her for a loop, it confuses her and it takes a while for her to catch up.

For instance, on Saturdays ever since Maya was 3, Leo takes Maya grocery shopping on Saturdays together with his mom and then they spend the afternoon over at my MIL's house.  It is their routine, she knows it backwards and forwards.  Actually anytime Leo is home during the day (as he is this week) Maya assumes they are going to get up, eat breakfast, get dressed and go shopping.

Leo's home = shopping = Saturday

Get it?

I mean for a long time Maya didn't really know the days of the week.  It was a concept that was hard to grasp.  At school they use a color system to teach this.  They start out that every day is a color and on the day chart at school they show what day it is through color.  The kids associate the color with the day and learn the order of it and eventually the names of the days replace the colors. Maya does know the days of the week now and she really doesn't need the colors anymore, but I can see it is the colors and not the actual names of the days which she relies on.  If she asks me what day we are going to do something and I say Thursday, she always retorts:  the blue day?  She uses the colors to confirm what I have said,  the visual always supporting the language.  

Last night when Maya was taking her bath I told her that we had to get up a little earlier tomorrow morning because I had to work, which meant that we would get up, get dressed and get in the car so Leo could drive me to my office.  And the first thing out of her mouth was, "but I have to go shopping with daddy."  Even though Maya now knows her days of the week and that tomorrow is not Saturday, daddy being home with her, automatically kicks Saturday's routine into place.

As a non-autistic person the best way I can explain it is that autistic people have a hard time relying on what they cannot see or visualize and that is also why when they learn something happens a certain way, that it is tough for them to let go of the notion.  It was this way, so it should always be this way.

I have learned over time to be very careful about what I say to Maya.  If I tell her we are going to do something and then we don't, that is very hard on her.  She just doesn't understand, I said we were going to do it, I said it, therefore it's fact.  I always have to manage her expectations very carefully, even in terms of silly things, like washing hair.  We wash Maya's hair every other day and she has come to depend on that, she knows which days we will wash and which days she will just horse around in the bathtub.  When I tell her it is time for her bath, she automatically asks "washing hair" even though she knows the answer and if I change it up on her, like for instance want to wash her hair tonight instead of tomorrow night, because I have something to do tomorrow night and it is just easier to do it tonight,  I get chapter and verse about how tonight is not the night to wash hair.  She will roll with the change, but I still get the sermon.

Oh, the sermons!

I don't say we are going to do something if there is a chance we are not, it's better to say maybe or we'll see.  If it is something she wants she will try to get you to say yes just so she can hold you to it later but if you say maybe and then we don't, she may not like it, but it doesn't confuse her, she understands what maybe means.  But yes, yes means yes.  It's a fact, a given, going to happen.  When yes, turns into no that is very hard for her to understand.

I am making it sound like Maya is merely stubborn but I am not talking about stubbornness here.  I know stubborn, I am stubborn, I invented stubborn. It's not that.  Maya relies on routines and part of her routines are grounded in what people tell her will or will not happen.  If it goes differently than what you have told her, it just becomes very difficult for her to understand what information she can rely on and what information she can't.

But tonight after dinner she came up to me and she said, "Hanukkah is over until next year, no more presents, right?"

I'll consider that a moral victory, thank you very much.

Beating Back the Shadows

I feel that with a title like this, this post should be accompanied by some pseudo-scary music, bum, bum, bum!

I have decided that December is really not my favorite month of the year.  When I was still a student, I loved it, because it was the month of Christmas vacation and winter break which meant parties, hanging out with friends and being harmoniously free from studies and obligations.  In university I loved winter break because it meant coming home and catching up with high school friends and trying to cram in 6 months of contact in one month.  Loads of fun, loads going on, lots of activities.

You can say that I am a true generation X'er.  Born after the baby boom, I had the textbook prolonged adolescence, due to my not having any direction at all in college the first time around and being a prisoner of my many insecurities.  I ended up dropping out in my junior year after about a year of blowing off more classes than I attended.  I left and decided to move to Florida and ended up going to Tampa, where a close friend of mine from summer camp lived, and she was going through a similar thing so I went in search of the sun and fun and a lifestyle which was basically Christmas break all the time.  Loads of fun and parties, the only obligation being earning enough money to pay for it.  It was a lot of fun but mostly a numb, empty life.  Plus it seemed that no matter how many parties I went to or how much I tried to block out my insecurities through a hedonistic lifestyle, they still creeped in.   I lived in Tampa for three years before I decided to go back to Pittsburgh and go back to school and had the courage to face growing up.  I finished my Bachelor's degree and decided to go on for a Master's and while I was a much more serious student the second time around, I still lived and embraced the life of a student.  My dad supported me financially and I worked part time although that was mostly for fun and  to have extra money for shopping and goofing off.   I was 31 by the time I had gotten my first real job, after finishing my studies, and making the move to Israel.  Most of my friends from high school were already working, married and starting families, the living from school break to school break lifestyle far behind them.    But for me, although I had a job and obligations in Israel, it was still just-me as a single professional woman and I was still another half a decade from marriage, family and the obligations that truly usher you into adulthood.  It was not quite the same as being a student, but still, it was a pretty charmed life.

Now though, as a full fledged adult, I have come to truly dislike December.

I know that many people love December as it is the culmination of the holiday season and full of family, fun, parties, Christmas, Hanukkah, what-have-you.  And while I do enjoy the holidays I really don't like December.  Maybe part of it is just the switch from childhood to adulthood, that your carefree youth is something of the past instead of the present.

In the Netherlands, December by far has the shortest days of the year.  That is of course true all over the northern hemisphere but you feel it in the Netherlands much more than I ever did in the US in Israel.  Sure, the days are also shorter there, but you still a good 9-10 hours of daylight.  In the Netherlands, you literally only get about 6-7 hours of daylight per day in December and most of that daylight is foggy, wet, cold.  It's kind of depressing.  I am a homebody at heart and can happily stay home without going someplace for days on end.  But I hate when there is no sun, where I can't go outside with Maya for a little bit each day or walk without getting sopping wet.  We are a week from winter solstice, marking the shortest day of the year, this morning it got light at 9.30 and will start getting dark around 3.  It's crappy.

I do love Hanukkah though, always did and we do celebrate it, we light the Menorah every night, give Maya small, meaningful gifts and usually have friends and family over for Latkes (potato pancakes) and Sufganiyot (donuts) which are traditional fare to mark Hanukkah.  I do love doing this but it is always with Leo's family and while we always have a good time, I miss my family a lot at Hanukkah.  Hanukkah as a kid was always a lot of fun in our family.  We always gathered at my grandparents who let us order gifts from the Sears catalog (I know it sounds lame now, but trust me in the 1970's that was freakin' cool) and we would get together at my grandparents house and open our completely-over-the-top gifts, stuff totally impractical which our parents would never waste money on.  I got soda fountain one year, cotton candy maker, my cousin had an ice rink and tons of other stuff which usually broke after one or two days and then were stored in the attic.  But it was loads of fun, everybody was happy and mostly we were all together.  As much as I enjoy celebrating Hanukkah with Maya, Leo and his family, part of me is always wistful for Hanukkah at our grandparents' house in Washington, PA which lives now only in mind's eye.


Also December has a lot of emotional milestones for me.  My mom died in December and my dad's birthday is in December as is my grandmother's.  They are just on my mind a lot and being the end of the year and all December is a taking stock kind of month so I just  miss them more in December.  Also this year we have had a lot of little things going on, some health issues in our family, none of them truly serious thankfully but each requiring time and zapping energy already in a month where the stores are low.

So, mostly, I'd like to just skip over December.  January is still cold and wet but by February the days already get a tad longer and even though the weather still sucks, by the end of the month usually the crocuses bloom which tell me that spring is coming and brighter days (both literally and figuratively) are ahead.

One thing I am grateful for is that I am the type of person that can go through a low period and not totally decompensate.  I can keep my perspective even when things get bleak.  I can look at a low period as exactly what it is, a period in time rather than paint my whole life and future with a black paintbrush, that if I sit and wait it out, I know it will pass.  I can lose myself in tv or movies and I try to focus on what is good in my life and when all else fails I grab onto my little girl and let her beautiful spirit envelop me and that always helps.  And mostly I just know that while my life is not perfect, it is good and it is what I make of it.  I can choose to let December completely engulf me or I can just wait until it passes.  Thankfully I am the kind of person that chooses the second option.

So this year, like always I am a little bit blue but next week is Hanukkah and I am hopeful that as we and Jews all over the world again commemorate that miracle from so long ago that the light and warmth emanating from our Menorah will be enough to light the way through dark December.