Sunday, April 14, 2013

Autism Awareness Month 4/14 - Gina - Friend

Gina is one of my oldest friends. We went to 1st grade together. We graduated High School together... and the 12 years in between. We lost touch after high school, saw each other at the 10 year reunion, found each other through Facebook. "Liked" pictures of each other's kids. Exchanged an occasional "How's it going?".

Then, on August 13th, 2012, after a vague comment on one of my blog posts, I received this message:

Hi, Jordan,
Unfortunately, yes, our 18 month old boy, Julian has just been diagnosed as mildly autistic. He has had 4 evaluations over the past couple months, and we have our family meeting with the city to discuss his treatment plan on the 29th. The blessing is that we are in NYC, and having this diagnosis now entitles him to 20 hours of therapy and teaching per week plus OT and speech therapy. I've been at my wit's end for quite sometime- he screams at the top of his lungs to communicate and I literally think I'm going deaf from the loudness of it everyday. Luckily for us, he is very smiley and can be quite personable, so it s not all bad, all the time. But I am definitely looking forward to getting some help. 
What age was Jack when diagnosed? Do you think pretty intensive treatments now will help, in your opinion? Everyone keeps saying how young he is, but as a parent I think you know when something is wrong.
Thanks for your moral support. We should definitely talk sometime.

And talk we did.

Gina was quick to respond to my "call for submissions" for the Autism Awareness Month project. Her story brings a new perspective to raising Autism... her husband.

There were a little over 400 students from my High School class. Statistically, there should be 4 or 5 of my class with a child on the spectrum... And now I have published the four of us (that I know of). Me, Heather, and Andy and, now, Gina. BHS class of 92... Go Knights!

Ladies and Gentlemen, a fantastic, revealing, and humbling submission... I present Gina.

This past year has been a whirlwind.  My youngest boy, who has beautiful big blue eyes and wispy blond hair, has been diagnosed as ASD, or “on the spectrum”.  When evaluated at 16 months, he was too little to say that he was or is definitely autistic.  My son had some of the usual red flags, but I didn’t think he was autistic because he was so smiley and sometimes very personable.  He was not clapping, waving, or pointing; had little to no eye contact, delayed speech, and yelled ALL the time.  It had gotten to the point where I thought I was going deaf in my left ear.  He spent his whole day traipsing the house with toys in his arms, dropping them in other rooms, never playing with them.  His real obsession was pressing buttons, which we now know is a stimming activity for him.  No item of technology was safe, but particularly the remotes were constantly abused. The list of behaviors that concerned us went on and on.  Even though he has an older brother, I felt like I was completely out of ideas as to how to take care of my child, and quite possibly was going out of my mind.  I decided it was time to get some help.    Four separate evaluations over the course of a couple months led to the shocking revelation that he was not just having trouble communicating, but was mildly autistic.
Enter Early Intervention, a program which has basically saved me from insanity.  I feel very lucky to be living in New York state right now, because the services they’ve given to my little guy have been excellent, easily acquired and at no cost to my family.  I can’t say what the future holds, but he has, thus far, had what I would consider an almost miraculous response to therapy.   We happen to be in the right place, at the right time.  As someone who tends to believe “everything happens for a reason”, I can’t help but think even though this is never something I’d wish for, this was all meant to be.  But there’s more, and I’d like to go back a tiny bit, before the diagnosis crashed down, changing everything.
My second son, Julian, was born during a tumultuous time.  My husband got an offer for a job that took us to New York City from Madison, Wisconsin.  The change couldn’t have been more different, or more welcome.  As native Californians, we were so done with the long, terrible winters of the Midwest, and the short, buggy summers.  We looked forward to our wild change in location and hoped it would bring a renewal of sort to my husband who has significant issues with depression and who had recently lost his father to cancer.  We needed to do something exciting and totally off the wall.  We moved halfway across the country (to the “other coast”) when I was a mere 10 days from my due date.  I traveled carefully by ridiculously overloaded car with my paperwork from my obstetrician, just in case.
Julian was always different from his brother.  As a newborn infant, he had the loudest baby wail I’d ever heard, but he also had the most expressive voice a baby could have.  He cooed and sighed adorably when he was happy or being fed, and wailed angrily when he needed something.  Even strangers noticed and commented on how well he expressed himself for an infant.   Julian gravitated towards textures in a different way than my first son.  The silky, soft things that my eldest craved to touch were ignored, even pushed away.  He preferred nubby, coarser textures.  To this day, he will only allow one of his 3 favorite blankets (all the same) to cover him.  The crib that was now ready for #2 would not ever be properly slept in.  He seemed to hate the pattern or the feel of the wooden slats, whether or not he had to touch them.   He much preferred the softer mesh of his pack and play crib, and would sleep hours more at night if I didn’t try to rock or read to him to sleep and left him alone in his room.   A bedtime story could keep him up for hours.  Only a bottle and complete silence would woo him to sleep.  Basically everything I’d learned about babies from my older son was useless in the case of Julian.

Now, I need to go forward again, to the time of my littlest guy’s evaluation period.  The general sensory evaluator was watching Julian roam around, making notes, chatting with us about her experience and about her own family which was quite touched by autism.  My husband of 7 years was working from home and was sitting with us as we were discussing the issues of concern about Julian.  The conversation came up that many of the things that Julian doesn’t do, like wave, say “bye-bye”, look people in the eye, etc, were things that my husband doesn’t do either. Over the course of the discussion, the evaluator helped us to realize my husband is pretty clearly on the spectrum, too.    He comes home from work, and despite my suggestion that he come and greet me and tell me he’s home, he nearly always forgets because it doesn’t occur to him and he doesn’t understand why that even bothers me.   He gets completely obsessed with protrusions, like noses, or dents, like belly buttons.  He’s brilliant, and he rocks back and forth like Bill Gates when he’s concentrating, but practically incapable of self-care. His favorite companion is a computer, because he doesn’t have to stress over interactions and try to figure out what it’s thinking.   He has siblings he’ll barely talk to, “friends” he never, ever calls or wants to do things with.  He’ll go to parties, but sits in a darkened room by himself, reading magazines. He totally misreads facial expressions. And most disturbing is having entire, important and intimate conversations with him with his eyes closed, because eye contact can be so uncomfortable to him.   We had sort of jokingly thought he might have Asperger’s, but he had never been diagnosed.  Understanding the range of the autistic spectrum and dispelling the myths about autism helped to explain so much about him, and why he rubs many people the wrong way and doesn’t seem to care very much what other people think of him.  In many, many ways, my son Julian is a little version of my husband.  We are so grateful that Julian has to opportunity to nip some of the more problematic behaviors in the bud while he’s still little, but still has time to grow and flourish in the gift that comes with the way his brain works.

So what does autism mean to me?  The meaning to me is much more than I could possibly have ever guessed a year ago.  It’s the pair of glasses through which two of my dearest ones see the world.  It’s genius.  It’s being misunderstood.  It’s a struggle, a hurdle, an obstacle.  It’s the phone call that doesn’t get made.  It’s the gray hairs on my head.  It’s heartbreak, but also, most definitely, hope.  
My hope for my son is that he can find another person in the world who will love him and understand him and see him for the light and beauty and intellect that he is, not just despite his autism, but also because of it, as I do with his father. 


  1. OMG thank you for sharing your wonderful story!! I have a similar one I have 2 boys w/autism, & I believe a husband who is undiagnosed. Alot of the behaviors my husband does used to make me very upset & offended. However knowing what I know now about autism, it helps me to understand these behaviors & not take them so personally. Again thank you for sharing your story.

  2. Gina, welcome to the club. Your last statement is something that I think about all the time. What happens to B when I am gone? Just means I need to focus and prepare for when that certainty comes.

    Jordan, I think I know the 5th member of the class of '92 to be a member of our club. It is through hints on his Facebook page and I have not asked about it.