Sunday, February 7, 2010

The next slice

I said I was going to talk about my children, but first (forgive this repeat, my Facebook friends) I just wanted to share this moment of levity from my Mom, who has otherwise been crying all week:  A bedside commode chair for my Dad arrived the other day w/ a tag that said: “Checked and working properly, and ready for use.” Mom read it, paused, then said “Let’s hang that on Jim’s penis.” With everything that’s going on, I’m very glad she still has her sense of humor.

OK, on to the kids.  Actually, this exemplifies what’s been going on at my house for some time: my kids getting the short end of the stick because my parents are just so damn needy right now.   For many people, when their parents hit this stage, their kids are older - teenagers or in college, maybe even young adults who can actually themselves be helpful and involved in their grandparents’ care.  Not so much over here, in the land of s t r e t c h e d out generations.  My husband and I each have significantly older siblings and between us 6 nieces and nephews who range in age from 27 to 35.  So our kids’ first cousins are all old enough to be their parents.  Hmmm.

I sometimes feel a little sad about this, remembering the amazing cousin conventions of my childhood. My Mother’s brother’s family was the one we spent the most time with, and I was incredibly close with his two daughters: my cousin Jessie, exactly my age, and Annette, 2 years younger. They were the closest thing to sisters for me, and I cherished the time we spent together.

But I digress.  Get comfortable with that phrase. If you’re going to follow this blog, you’re going to hear it a lot.  Straightforward, I am not.  But I do get there eventually, and isn’t the journey supposed to be half the fun?  My son, Ethan, told me I was crazy when I quoted this aphorism to him in an attempt to instill some serenity into a fraught moment.  He is a child of pointed passions and limited patience. If he had the vocabulary (and thank god he doesn’t, yet) his motto would be “screw the journey, let’s get there!” 

Jacob, on the other hand, is deliriously happy to be distracted by the myriad bright and shiny objects along his path; especially if they’re spinning. The journey is the whole point for him … was there a destination?  Unless, of course, we are going to the movies, then: let’s get the hell there and start eating some popcorn, please!

My boys are in 2nd grade, and I will be turning 50 this summer.  I am not the oldest mother in the world, but sometimes I feel like it.  And yes, they are IVF twins, and yes, it was my own eggs (for those of you who need to know).  Anyone who has seen baby pictures of me and of Ethan would know to never question that last part.  Jacob, on the other hand is the frighteningly spitting image of my husband at 7.  Danny (the husband) has told me of passing by the living room and thinking “what is my childhood self doing, sitting on that sofa watching TV” before his brain fully processes that Jacob is in the house.

And now for the thing that makes my life especially juicy and complicated, the kicker that I dropped at the end of my first blog: Jacob is on the Autism Spectrum.  I hate to micro-label, to classify, to reduce him to his DSM IV category, but in the interests of providing a snapshot of him and our life together I will clarify where “on the spectrum” he falls: high functioning PDD-NOS.  When I tell people that, they often ask “Aspergers?”  But, no - he is, in reality, the anti-Aspergers boy. 

His big big big issue is language processing, and he is actually very related, very interested in socializing, talks ALL the time (like his brother Ethan -- we are NOT a quiet family) and would much rather be with people than not.  He just has no clue as to social rules: in the “guess what is normal vs. what is not” competition he would come in dead last.  He has long conversations with the cat and is stumped as to why she won’t answer him, when we do. 

He is also one of the happiest children I know.  Watching the Temple Grandin Movie on HBO tonight brought up so many intense feelings, I’m not ready to write about it yet, still need to process it all, but one thing really struck me: when asked how she was cured, she answered that she was still, and always will be, Autistic.  She had just learned how to get along in the world, and how to use the wonderfully unique aspects of her brain to build a life, a career.  She is who she is; to quote her mother “different, not less.”  

It reminded me of how I answer Ethan when he asks me if I wish that I could change Jacob and make him not Autistc anymore.  I always answer carefully, that I love and value Jacob as he is, and if I could simply make it easier for him to communicate with us and for us to communicate with him, then I would do it in a heartbeat.  But if it meant also substantially changing him, taking away his spark, his magic happiness, the ‘who’ of him, then no, I would not change him for all the world.

There is so much more to say about Jacob, but there is more time for that down the road. Ethan will want his day, and that will be tomorrow.

Family 1967 - My Father with all his kids: Bernice (sister in law), Bruce, me, Lois

Preparing to post, reading over this blog, I realize I need to clarify something, for those confused about my sibling status.  I will refer to myself as an only child, and then I’ll mention my brother or sister, and people will get that “um, did I miss something” look on their faces.  So here it is: 

I am the only child of my parents’ marriage.  My father had had another wife, another life, and two children previously: my (half) brother, Bruce, and my (half) sister, Lois.  By the time I was born, Bruce was 18 and heading off to college, and Lois at 15, living with her mother and stepfather, really had no use for a baby sister. 

So during my childhood, while I technically had half-siblings, I saw them infrequently, once or twice a year, and they functioned more like a young Aunt or Uncle to me than a brother and sister.  We never lived together, and I was raised, for all intents and purposes, an only child.  

Engagement remained sporadic, fading in and out through my (self-finding, family-distancing) 20’s.  Then my 30’s and early 40’s we connected for all the things that gather scattered families: graduations, weddings, births, milestone birthdays, and occasionally just hanging out.

I remember the first time I came to stay with my brother and sister-in-law for a solo visit: I was out with my brother and he introduced me to someone as “my sister, Varda” and I got this strange, quivering feeling inside, because I was so unused to hearing myself called anyone’s sister. I liked it.

And then in the last few years with our father’s failing health and increasing dependence, Bruce and Lois and I have really come together as a team to care for him and my mother.  However, as neither of them live here in New York, and my mother is not their mother, I am out alone on the front line, doing all the physical care, the medical management, the one who gets called next after 911, who heads out at 3 AM to the Mt. Sinai ER and comes home 36 hours later to clingy children.

Bruce lives in a Washington, DC suburb and Lois lives in North Carolina.  When they came up last March for Dad’s 92nd birthday / Mom & Dad’s 50th anniversary celebration, we had a rare late blizzard.  When they came up in mid-December to spend some (possibly last) time with him after his disastrous hospitalization, we had the one big snowstorm of winter.  

My kids are dying to sled, having anticipated 6 inches of snow today and gotten bupkis.  DC is buried under 2 feet plus and North Carolina got a foot last week.  I think I need to make Bruce and Lois come back up North, just so my kids can get a little toboggan time in.

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