What Now?

Richard and I have both been worrying since we returned to New York City.  We worry Emma has flat lined or worse begun to regress.  She seems more irritable, for the past three nights she has gotten up at 3:45AM, 4:00AM and last night at 2:30AM.  She seems more easily frustrated, quicker to tantrum, less able to tolerate anything she is not able to directly control.

I must add; I am tired, which always affects my outlook, casting everything in a grey laden tone.  I do not know whether I can trust my perceptions.  Is Emma really regressing or am I just tired?  She woke us at 2:30AM last night and though I was not the one returning her to her own bed until she fell back asleep, I felt guilty.  Richard was with her and would be facing a full workday as well.  He had also covered for me, “flying solo” as he put it on both Sunday and Monday morning, as I was an attendee and exhibitor at the WIE Symposium with my jewelry.

I stayed up for over an hour tormenting myself.  Is she regressing?  Have the stem cells had any impact?  What will we do now?  What if none of this works?  What will happen to her?  How will we continue?  My thoughts devolved as the minutes ticked by.

The stem cell treatments have, until recently, provided me with such hope.  I hoped they would make a significant improvement cognitively, in her speech, in her ability to tolerate frustration.  I hoped they would allow us to have a conversation with her.  I hoped they might even help her attend at school, learn eventually to read and write.  Now I am not so sure.  I am feeling beaten down.  What will become of Emma?

I do not know.

We are in uncharted waters.  No one can predict what our autistic children will be like in five years, ten years.  No one can show us autistic children, now adults and say to us – if you do this, this and this, your child will be like this adult.  Functioning, living independently, able to hold a job, have relationships with people who genuinely love them for who they are and not because they are being paid to care for them.

I spent yesterday at the first annual WIE Symposium  (Women, Inspiration, Enterprise).  The day was sponsored by the White Ribbon Alliance, a non-profit, attempting to help pregnant women all over the world have a safe pregnancy and childbirth.  I listened to women who have traveled the world tell horrifying stories of the women and children they have met and are trying to help.

One of the speakers spoke of how all children are our children.  She said it is up to all of us to ensure all children are given opportunities, food, medicine etc.  And I thought about Emma.  Richard and I both hold jobs.   We were both born and raised in the United States.  I have a family who is involved.  We have been given opportunities which vast portions of the world’s population do not have available to them.  And yet, we both have felt the profound isolation which comes with having a child with special needs.  And it is profound.

Mellody Hobson, President of Ariel Investments on a panel – “Business as Usual” told a story of a moment when the market crashed, she called her boyfriend in despair.  He reminded her she was from Chicago.  Not sure where this was going, she said something like, “And?”

“What do you do when there’s a blizzard?” He asked.

She was exasperated, couldn’t figure out the point to his line of questioning and began getting impatient.

“You look at your feet, you don’t look up, because you’ll fall.  So you look at your feet and you keep walking,” he said.

Later, each panelist was asked what advice had proven most helpful to them over the years, Mellody said she’d been told to smile.  Mellody is an African-American woman who said she made the decision she did not want to be “an angry black woman.”  She spoke of how it was important to her to carry on her life with elegance.  She told another story about conducting a meeting at her office only to have the first gentleman who arrived hand her his coat.  She said nothing, hung it in the closet and proceeded to sit at the head of the conference table where she began the meeting.

The last panel was on Philanthropy and Advocacy.  A young African girl, Nthabiseng Tshabalala was on the panel and spoke last.  She looked to be about Emma’s age, perhaps a few years older.  She spoke beautifully about her experiences and ended with, “I am here because I am educated, you (gesturing to the moderator Sarah Brown) are here because you are educated, all of you are here because you are educated”, and again I thought of Emma and all the children in this country who are not “educated”.  Where does that leave us?  Where do we go from here?

For today I am going to look at my feet and keep walking.

“Do something for someone else,” Diane Von Furstenberg told a young audience member, seeking advice.  “And fake it ‘til you make it.”

I’ll try that as well.