Push Me, Pull You

I took a nap yesterday, and I dreamt that Alex and I were walking through town.  Along the way, we stopped at a lemonade stand.  The girl selling lemonade was about Alex's age.  I didn't know her, but they knew each other.  He looked at her, and spoke.  A complete sentence.  Clear as could be.  I could hear his voice in my dream.  It shocked me so much I immediately woke up, and as soon as I was awake I wished I was asleep again so I could hear what his voice sounded like.

There isn't a day that goes by that I don't wish I could hear Alex's voice.  I want to know what he's thinking.  What he's feeling.  I want to know if I'm guessing right.  I'd even be happy to know that I've been guessing wrong, if I could hear it from him.  "Mom, what were you thinking?"

I've learned to listen differently.  I've learned to watch and read signals.  Sometimes, when people interpret his sounds and actions as happy, we believe we know differently.  It may even begin as happy, but it slides into anxiety and overstimulation.  John, Jessica, and I have learned to read him.  There are others who can read him, too, but it takes practice and a real commitment to paying attention.

We've learned, I hope, to pay attention.  We've learned a lot in the past 25 years.  Parenting for anyone is a journey and there are mistakes and milestones.  Parenting more than one child requires a lot of juggling and balancing for all families and we all have our own unique sets of challenges.  In our case, parenting Alex and Jessica makes me think of the "Push Me, Pull You" from Dr. Doolittle.  Often what they each needed was in direct contrast to each other.  The challenge to give each one what they needed, when they needed it, was always a goal but sometimes it was harder to achieve than others.  Each one pushing, pulling against the other like the fictional creature.

It wasn't just that Alex needed a lot, or that Alex couldn't do the things that Jessica could.  Alex needed therapy and intensive intervention and, in those days, the outside help we received was minimal.  From his diagnosis until he started school at age 3, we got about an hour of therapy a week.  He started early childhood at age 3, which was half days, four days a week.  The rest was up to us.  Jessica started music lessons at age four, and performing in theatre at age seven.  Alex wasn't the kind of kid you could drag along to a music lesson or play practice.  You could take him in the car to drop her off, but even waiting for a pick up was often problematic.  John and I learned early to divide and conquer.  We were also able to rely on some family members to help with transportation, and we started hiring caregivers who would be able to watch one when we needed to be involved with the other.

And we learned what we could do as a family, and what we needed to do separately for each one.

Now that I'm older, with a "few more trips around the sun" as John likes to say, I would cut my younger self a lot more slack.  What's the big deal if the younger sibling doesn't want to go to the recital, I would say now.  But back then, it was difficult.  For many years, as I sat in the audience watching Jessica perform, I felt guilty about leaving Alex behind.  It hurt that he couldn't be there with us.  Maybe my angst was needless.  If he could have spoken, maybe he would have said, "Geez, mom, why would I want to go?"

We learned what we loved to do together - baking cookies, coloring Easter eggs, watching movies, going for rides, swimming, roller coasters and museums.  We travelled together.  We went through museums at Alex's pace.  We visited Disney and rode roller coasters.  We've been to Mount Rushmore, Washington DC and Boston.  We made memories as a family.

When we went to Disney when Alex was seven, he had finally learned to say "no."  He pronounced it "whoa" and would shake his own head back and forth, but he would also grab the face of the person he was talking to and she their head.  We'd inadvertently built that in as part of the response through years of trying to teach him how to say no by adults touching his chin and shaking his head back and forth.  He thought that was part of the response.  We drove to Disney, and any time Alex heard someone (whether he knew them or not) say the word "car" he would grab my face, or his dad's or his sister's, and emphatically say "whoa."  He did not want to go home!  We were thrilled with his communication, and he gave us a good chuckle.

We knew, and Jess learned at a young age, that traveling with Alex meant the trip had to work around his needs and what he was able to do.  Roller coasters - yes; lining up and waiting for parades - no.  Being together as a family was the most important thing.  Watching Alex enjoy new experiences was magical for all of us.  When he was overwhelmed or struggled, we all just wanted to make him feel better.

Within every trip, John and I would trade off with Jessica.  At some point, when Alex needed a break, one of us would stay back with him and the other would do something special with Jessica.  We would do something that she wanted to that Alex was unable to do.

Starting when Jess was about six, we began traveling alone with her.  At least one weekend a year, we would take her someplace that she wanted to go - a weekend in Milwaukee, or Chicago, or New York.  Most trips were pretty simple; some, a bit more involved.  We would visit museums more slowly, and go to shows and restaurants that Alex would not have enjoyed.

It wasn't easy to figure all this out, and we didn't always get it right.  Sometimes the compromises were easy, but sometimes they weren't.  We took Alex to visit Jess at MIT in Boston.  It was a great trip, and Alex did well.  But traveling takes a lot out of him.  In some ways, it's gotten harder as he's gotten older.  I think when he was younger he was more oblivious to the world around him.  He can't shut things out as easily now.  He was done with that trip before we were planning to leave.  We decided to leave a day early.  It was a difficult decision, and disappointing to all of us.

Without Alex having language, we don't have the ability to negotiate in these situations.  We can't ask him if he wants to leave, or if he wants to stay even though it's difficult for him.  We're always guessing.  We're always trying to decide if the "stretch" is worth it - what is he getting out of this, is it what he wants, is it good for him, or is it too much?  We don't want Alex's world to get to small, but we want to respect his needs and wishes.

Holidays and family events have always been tricky as well.  Alex was always easily overwhelmed by the excitement, energy, and change in routine.  Jess loved it all.  Lots of cousins?  Great!  Tons of people?  Fantastic.  We had to figure out a system for these as well.  John and I always had a plan - who would stay with Jess, and who would take Alex home early.  We often went places in two cars, so one of us could leave with Alex if we had to.  Every event had a back up plan.  If it was an event that we felt we both needed to stay for, then we had someone else on "stand by" for Alex.

When the wedding planning started, we knew we had to have a back-up plan.  We all wanted Alex to be a part of it, but knew that he had to have an "escape" whenever he needed.  So we made a plan with one of Alex's caregivers from his group home.  We had a plan we felt good about.  Then he got sick.  We didn't know how that would impact his ability to participate in and enjoy (tolerate?) the day.  Then we realized that the wedding fell on a chemo week.  We knew that there was a real possibility that Alex wouldn't feel well enough to attend.  We made a plan, and prepared ourselves for whatever he would be able to do.  Jess and Rusty came home from California for the wedding on Wednesday.  We all went to chemo with Alex on Thursday.  Alex should have spent the next two days in bed.  Instead, he went to a wedding pig roast.  He was anxious, but he stayed for over an hour.  (That may not sound like much to the casual observer but, trust me, that was a big deal; even for a healthy Alex much less one who had just had chemo 24 hours before).

The day of the wedding, he showed up looking handsome and healthy, and with a big smile on his face.  He walked me down the aisle.  He beamed at his sister when she took her place by Rusty's side.  (And he apparently stuck out his tongue at Rusty.)  Just like the rest of us, he didn't stop smiling all afternoon.  As he took his last bite of his dinner, it all caught up with him.  The color left his face, and he suddenly looked like he would fall asleep sitting up.  His caregivers quickly finished eating, and took him home.  Alex had exceeded all of our expectations and, by all indications, looked like he had a great time.  We couldn't have asked for more even if he hadn't been sick.  He always seems to know when it's time to step up, and he certainly did that day.

So now when I think of that fictional Push Me Pull You, I don't see that creature that is tugging at each other, unable to move.  I see that creature learning what the other half needs, and learning how to move together. Each one learns to give when the other needs it.  At the end of the day, I guess that's the lesson that every family needs to learn.