Monday, May 14, 2012
I am sitting on a nearly full plane that seats 37 people – not my favorite aviation type – but I have the bulkhead window seat with no one next to me.  The engine is so loud it is drowning out the two Frenchmen behind me chatting with the only flight attendant.  So I figured it is about the last and best chance to start my blog.  Nothing like waiting til the last minute.   (Maybe I could have started Saturday instead of scrubbing the gutters surrounding our patio so they would look nice at our Sunday Mother’s Day brunch.  Funny, no one even said, “Wow, your gutters look like new!”)

I did think of starting a blog several years ago, but have never found the time to concentrate on it.  Why now?  Because I promised I would as part of my grant award from Autism Science Foundation to attend the International Meeting For Autism Research (IMFAR) in Toronto, which is May 17-19.    This is the gathering of the world’s autism researchers who will share their findings and discuss their studies in progress.  I am the mother of a 16 year old girl who was diagnosed with PDD-NOS, an Autism Spectrum Disorder, when she was two and a half.  More about that later.

So this plane is not going to Toronto, but to Raleigh, NC, where I will spend two nights and one day in a meeting with work colleagues.    I actually almost never get to travel for work.  At my company, employees who work on the same team could be working from 6 different time zones.  Sometimes co-workers never meet each other in person.  Many of us work from home and rarely see another employee.   IBM use to stand for I’ve Been Moved, now it stands for I’m By Myself.  So when one of my managers asked if I wanted to join her team meeting, I jumped at the chance and quickly figured out how to get to get from White Plains, NY, to Raleigh, NC, for the Tuesday meeting and make it back to New York for my Wednesday morning flight to Toronto.    I really want to meet with these colleagues, a few of whom I have never met in person, and to learn from them.  I have always worked in an area where I knew as much if not more than most about what I do in marketing.  Or, I was working in an area where we were all learning together.  So this will be refreshing.

Being a mother of a child with autism is an all-consuming job and life.  (And, it is not what I ever expected, especially after reading “What to Expect When Expecting”.)  At the same time, being an employee of the leading company in a very competitive high tech industry is also all-consuming, especially since I need to keep my job in a climate where US jobs are being cut and sent to contractors, agencies, and other countries.

So combine the stresses of living with autism and the stress of managing a career, I often wonder how I can make two jobs into one, or at least one and a half.  All parents of kids with disabilities say they can’t die before their child.  Now I feel I can’t ever stop earning an income, since I suspect that my daughter will not be able to fully support herself.

I was offered a job at IBM the day I found out I was pregnant in the fall of 1995. Before that, IBM was my account at an agency.   One of the clients, Barbara, had told me a few years earlier that she had a gifted son and an autistic son.  I had never known anyone with autism.    By the time my daughter was a year old I was suspicious, and by the time she was 18 months old, I knew something was not right (my pediatrician did not).  I sat down in Barbara’s office and cried.  She became my first guide.

About two years later, back in the days when I thought “ oh, one more speech therapy session and she’ll be all better,” I was looking to find ways to intersect my paid work with my unpaid work.  I had three questions:  what can IBM do with technology to help children with autism learn and communicate (at that time I was thinking of my 3 year old using a PC and mouse); what can IBM do to help employees who are parents of children with autism, and what can IBM do to make the work place more “accessible” for people with autism.

When my daughter was in pre-school, I contacted a very senior executive who I knew had a young son on the spectrum.  While she never responded directly to me, her assistant sent me off to the research division that had a team who focused on accessibility.  I talked to a few researchers in that division over the years but there was never any business commitment to this audience.  There was no business justification to focus on needs of people with developmental and cognitive disabilities.  (They do focus on enabling access to IT for people with hearing, visual and mobility impairments)

While at a conference in Washington, DC where NAAR and Autism Speaks were merging, I met a woman, Colleen, who also worked for at IBM and we realized we each know others at work who had kids on the spectrum.  So, being the social organizer that I am, I set up a conference call on a Friday afternoon and a dozen people came.  They each knew another employee with a child on the spectrum and my contact list grew to over 40 employees, most in the US and some in Canada, India, Australia, and Bangladesh.  I organized calls every few months and people joined to share, to kvetch, to come up with ideas for my three questions – and a fourth: and what can we do as employees of kids with ASD to share our experiences with each other across the country and the world.

So for the past 7 years I continue to share information and help connect our “IBM Autism Interest” community.  Ruth set up a Lotus Connections space to share.  We have calls from time to time; the area we have most been able to address is the fourth mission – a sense that we working parents are not alone and we understand each others struggles to manage a career while doing everything we can for our children.

So part of my mission at the IMFAR conference is to share what I learn with my IBM community of interest and perhaps inspire some ideas of where IBM can contribute to the mission.