Tuesday, January 18, 2011


I had a somewhat sad epiphany this past Sunday, when I took a trip with Ethan alone that I have always taken with both boys before.  And it was a real eye opener for me.  One of those moments when you peel back the veil and catch a glimpse of how the other half lives.

Because packing for a day trip with Jacob is like packing for an expedition: multiple changes of clothing (due to his complete intolerance of his clothes getting the least bit wet), lots and lots of food for his special GF/CF diet, vitamin/supplement/medicine packs for a full 2 days (because what if something happens and we need to stay overnight?) 

Also?  A ton of car food, because Jake can get extremely hungry at the drop of a hat (and frantically unhappy when hungry or thirsty).  And a collection of his currently favorite toys to entertain and engage him if he needs to be distracted, soothed.

It takes at least an hour.  We always run late.

Packing for just me and Ethan?  Took five minutes.  I couldn't believe it.  I kept turning around in circles, thinking there must be something else I must do, must pack.  But no, that was it.  Really.

Snow pants for sledding, a single change of clothes for Ethan (we're talking 8 year old boy here, after all, disaster is always possible), an extra pair of socks for me, present for the birthday boy, bottle of wine for the hosts, water bottles for the car, one snack item for the car.  Five minutes.  Done.

And then I nearly wept.

Because most of the time I keep those thoughts at bay, the evil "what ifs," but this just smacks it all up in my face: what life might be like if Jacob didn't have Autism.

Now, I love my son, Jacob to pieces, love who he is, would not change him.  He is full of love, overflowing with joy, enthusiastic in his embrace of the world.

But life with him is certainly 10 times harder than life with Ethan.  And 99.95% of the time I don't think about it, it just is.  I parent him the way he needs to be parented, the work-load is just what it is.

I am not a member of the "oh my life is so hard because I have a child with special needs" moanings and groanings crowd, really want to slap people upside the head that define themselves that way.

(Which is not to say it's not OK to complain, to say "this is fucking hard."  Because you know?  It is fucking hard.  And we are human, we are allowed to complain, should not have to slap on the happy face all the time just to make others more comfortable.  It's just when people constantly throw themselves a pity party and expect everyone else to join in, that truly annoys me.)

But every now and then?  I allow myself to think about it.  To picture that other, "what if" life, with the attendant freedoms therein.  And then I sigh.  And then I set it aside, and get on with it.

(I also daydream about winning the lottery from time to time.)

Also?  I know that there are many whose work-load (if you want to avoid a head smack, do not EVER use the word "burden" around me, either) is so much more intense than mine, who might fantasize about MY life:  Those with severely autistic kids who are self injuring and cannot communicate even their most basic needs; parents of kids who have medical issues that require life maintaining equipment, who need round the clock nursing care, whose mobility issues are extreme.

I look at those parents and while I don't think "How do they do it?" (another big no-no, we SN parents HATE those thoughts and comments; you just do it; because it's your kid, duh!) I do think "thank goodness I don't have to do that right now."  Because it's what I already do, times another 10, or 20, and well, that would be tougher, yet more work.

When the boys were still tiny, maybe a year and a half old, and any outing required military expedition level packing, an out of town friend came to visit with her family, and she was happy as a clam.  She had somewhat older children and, she was explaining, as her youngest was now four, she had her exit pass in hand from the "age of schlepping equipment" forever.  She could pack light for the trip and then traipse about the city unencumbered, procuring any necessary items on the fly, as needed.

I began to look forward to this time in our lives, this passage into relative parenting ease.  And now, with the boys at eight and a half?  I'm clearly still waiting.

But the other day I got a glimpse, a sliver of vision into what it would be like to live that way.  And I liked it, I realy liked it.  And who knows what time and development and maturity will bring to Jacob.  Someday, hopefully, maybe someday soon, we will get there. 

And until then?  There is a large, always packed backpack, waiting for me by the door.  And a deep groove in my shoulder, eight and a half years in the making.