Happy Birthday to Me

We have a running joke in our family: when my husband and I have barely seen each other in a few days except to share task and schedule related information, and we finally have a moment to sit down together, both awake, no kids present, he’ll ask “So, how’s Varda doing” and I’ll answer “Who? Who are you talking about? That name rings a bell, but…”  It’s our way of acknowledging that I’ve been answering to and functioning as “Mommy” (or daughter) for days on end and have forgotten all about me, the person.  

So when I was invited to write for Hopeful Parents and read their welcome letter, I had to blink a few times. The letter said (to paraphrase): “Write about your experiences and feelings as a parent of a special needs kid, how it affects your feelings about yourself and your family. This is not all about your kid, this is about you.” And I had one of those moments: “Who?”  So I know this is why they chose that focus.  This happens to all parents, the subsuming of the self to serve the child, but add in special needs, and you increase that tenfold, a hundredfold, a bazillionfold (to use one of Ethan’s favorite words.)  See there it is, my kids sneak into everything I think, everything I write.  Can’t help it, I’m a parent.  But to be asked to write and therefore think about me for a change, it’s nice, it’s necessary… and it’s near unto impossible, but here goes:

Today, August 10th, the day of my first post for this Hopeful Parents site, is also (not coincidentally, since I asked for it) my 50th birthday.  My twins have just turned 8, born about 2 weeks before my 42nd birthday.  I knew I was signing up for a lot, becoming a parent so late in life when I was used to and comfortable with my life as a non-parent, full of career, friends, romance, art, culture, restaurants, movies, travel - you know, adult stuff.  I figured I’d be going back to work at some point, gliding back into the grown-up’s world and some of that stuff, some of the time.  But of course I never counted on landing on Planet Autism when one of my twins, Jacob, was diagnosed at 2, and being propelled into that intense all therapy-and-research all the time “Autism Mom” life. So here I am, 8 years later, still a full time Mom, still circling around the twin orbs of my boys.  It’s intensely rewarding, but also beyond exhausting.  Anytime my husband has had to take over for me (like this winter when my father was dying and I was greatly needed and much in demand elsewhere) he always states: “I don’t know how you do it, it’s harder than any job, go back to work, you need the break.”

And then there was the additional kicker as I slowly realized that my “neuro-typical” son, Ethan, is actually not quite, well, typical.  That his intensity and high-strung qualities actually had a name and diagnosis: ADD -- mild, but definitely present and accountable for much that was frustrating about him.  And you know what? Reading up about it -- because that’s what I do, how I calm the panic, attempt to control the chaos –  it became quite clear that I definitely have it, too. Figuring this out explained a lot in my life. It took a long time to recognize Ethan’s issues because he seemed “normal” to me, you know, like me. Oops.

It’s like when I was reading up on Autism and all the sensory issues that go along with it, and memories of my own childhood oddities came flooding back to me. Because while my son Jacob is mostly hypo-sensitive and a sensation seeker, I was painfully over sensitive to sound as a young child, and would surely have received a sensory integration disorder diagnosis if I were born now instead of 50 years ago in the know-nothing 1960’s (“Refrigerator Mother” theory anyone?)  Reading up on this stuff, I realized I had over-active “bone conduction” hearing awareness.  This meant that loud sounds -- say a jackhammer in the street below, or (God forbid) fireworks, or even just a banged cabinet door in the next room – reverberated throughout my body and caused acute physical pain.  I was a shy, cautious child for a reason: loud things hurt.

So along my path to understand and help my kids, I have learned a whole lot about myself, too. Like why I can be so scattered and not be able to finish anything. Why deadlines terrify me, but I can also hyper focus and insanely immerse myself in a topic – like, say Autism – and have to work hard when in social situations to not go into lecture mode about it all.  They say the apple doesn’t fall far from the tree, and in my case it has also been a journey of self-discovery as I figure out my kids.  Not necessarily a bad thing, but not what I thought I was signing up for. However, as all parents of SN kids know, even though the journey we’re on is not the one we thought we bought the tickets for, it’s ours.

I have just spent the last weekend of my 40’s at BlogHer10, the annual convention thrown by the same named women’s blogging organization. There was a large contingent of special needs parents present at the convention, that began to coalesce into a community immediately at the first panel of the first day: “Blogging Autism.” We were the largest flock at the “birds of a feather” special interest lunch, spilling over our three conjoined tables and creating a loop of lap eaters as well.  Throughout the event, as I met more and more mothers of SN children and we spoke about our own issues I realized how not alone I am in all this apple-tree stuff.  We even joked that we wanted to start a group for moms w/ ADD – but we’d never be able to meet up since we’d forget to write it in our date books so it would be impossible to get us all to show up at the same place and time. Being able to laugh as well as cry about our life’s challenges was the healing catharsis I had been looking for in attending this conference, and I have come back to my “real life” and my own special family with renewed energy and well, what passes for “focus” around here. 


Varda writes about the pressures of being caught between caring for both her special needs children and her elderly/dying parents on her blog: The Squashed Bologna: a slice of life in the sandwich generation.  Her post about her son Jacob, “From Autist to Artist” has been picked up and reproduced on a number of sites including Autisable and the Irish Autism Action site. You can also connect with Varda on Twitter, where she tweets as @Squashedmom. She is honored and thrilled to now be an official Hopeful Parent blogger.