The Truth about Stephen and Henry

I haven’t written a blog post in forever because I’ve been crazy busy and there hasn’t been anything juicy to complain about.  Maybe I’ve turned a corner?  Instead, I’m inspired to write about some very special boys named Henry.

When my sister in law, Karen, was pregnant with her first baby, I was over the moon.  I freaking love babies.  We had a baby shower at my house, and in an effort to one-up myself, I also offered to take care of the new baby when Karen returned to work.  I’d been fired from my corporate job, I was home drawing full time and my mother was with me almost every day.  I would be great at it!  I am the Cesar Millan of soothing crabby babies at parties.  I happily ignored the alarm on my mother’s face when I announced that we were now a pencil portrait/daycare biz. 

 

I am not a morning person, but I was excited to hold baby Henry in my arms at 6:30 am when my brother in law, Alan, dropped him off for the first time.  At the end of the day, I made dinner while snuggling my nephew at the same time like an old pro.  When I handed him back, I put dinner on the table and excused myself to go upstairs so I could dramatically throw myself on my bed and sob uncontrollably for five solid minutes.  Over the following weeks I heard the same thing from all my friends… “What in the hell were you thinking?”



My sainted mother holding Henry
while I am weeping somewhere.

I had completely forgotten how hard new babies are.  God bless you if you’ve got one, it’s a nonstop job.  I had a business to run, a messy house to sort of clean, my own kids who needed me.  I had bitten off way more than I could chew.  My mother was a godsend, helping with Henry like he was her own.  I made it a month before Karen looked at me with concern and asked, “How are you?”  I burst into tears when I admitted I couldn’t handle it.  Karen cried with me as we agreed that babies were harder than either of us expected.  I had wanted to show Karen and Alan how much I loved them, to forge a close family bond that I crave so much.  Instead I disrupted things and stressed them out.  They were hesitant at first about my recommendation of our amazing sitter, Raquel, who cared for my boys when I worked out of the home.  I breathed a huge sigh of relief when they fell in love with her, too. 

Babies are hard work, but toddlers can be even more demanding.  And when Henry didn’t reach expected milestones, his attentive, intelligent parents worried and researched and faced the diagnosis they had feared.  Henry is autistic.  Their immediate and constant call to arms for every possible resource and piece of information to help their son has been nothing short of stellar.  No matter how often I tell them how impressed I am, how lucky Henry is, there’s always doubt in their voices.  Is it enough?  Will he go to public school?  Will he be okay?

There is no more room in here.

As if there wasn’t enough on their plates, my highly educated, overworked in-laws unexpectedly added another baby boy to the family almost exactly a year later.  Surprise!!!  Here you go again. Now at 5 and 4 years old, Henry and Mitchell are adorable together and I bet it has helped Henry immensely to have a ready friend, even if Mitchell is usually running the show.

When I was recently asked by a wonderful repeat client to draw a portrait for her son’s high school graduation, she attached a story to the email she sent with his photo, called “The Truth about Stephen Henry.”  As I settled in to read about my new subject, I discovered that Stephen had more in common with my nephew than a name.

Stephen’s mother Maureen chalked up some of his unusual baby behavior to quirkiness.  But other worries she shared with their pediatrician, hoping for guidance.  “Stephen doesn’t want me to rock him to sleep.  He’d rather lie on the floor and rock himself.  He cries uncontrollably when he hears sounds, or when he has to wear certain clothing.  And the babble talk he had before age 2 has disappeared.”  The doctor listened to Stephen's chest and checked his ears and pronounced him healthy.  He told Maureen, “So, he’s independent, so what?  Nothing wrong with that. He doesn’t like to wear clothes?  I don’t like to wear a tie.  Stop comparing him to other children, he’ll catch up.”

But Maureen knew something was wrong.  At a preschool parent-teacher conference, she sat in a preschool chair with her husband, rocked by a wave of denial and relief when they heard the word “autism”.  Relief that someone had taken Stephen’s struggles seriously.  Denial that it had to be something else.  Evaluation after evaluation, they heard the same curse, the same condemnation. 

So they went to work.

They made three decisions early on; to learn as much as they could, to never remain silent, and to lean on other parents of autistic children in support groups.  They read every book, searched every internet site, attended every conference.  They told everyone, “Stephen Henry has autism.  We’re not sure what that means exactly, but we know it is serious and we are telling you now because we know we will need your understanding and support.”  Not a single person ever turned them down, or turned away.  Not family, friends, bosses, or co-workers who helped pick up the slack so they could take Stephen to his twice weekly therapy sessions.

They learned that autism is a developmental disability which inhibits social behavior and affects a child’s language and ability to learn.  There is no known cause and there is no cure.  The rise of autism in California by 200% in the last five years has been described as “alarming”, “explosive” and “epidemic”.  It seems everyone is touched by autism, by children we love and who are loved by people we know.

Maureen and her family stayed positive and refused to be discouraged. Wonderful teachers fought for Stephen every step of the way, while others shook their heads in doubt.  As I read Maureen’s story, I felt triumphant that Stephen is graduating from public high school next month.  I drew his graduation portrait with pride, honored to help celebrate his success. 

 

I shared Stephen Henry’s story with Karen and Alan, thinking it was so inspirational that they’d be wowed by my awesomeness (which is my admittedly ridiculous hope about every move I make).  Recently, I asked Alan at lunch if I could write about his Henry in my blog about Stephen Henry.  He said it was fine and that people without an autistic child find stories like theirs inspirational. 

 

“For me,” Alan said quietly, “it’s a glimpse of the very hard road that we have ahead of us.” 

I want to believe it will get easier and easier for Karen and Alan and Henry; he’s made such terrific progress.  Mitchell is more of a handful these days than his easy-going, sweet, big brother.  They work so hard to do all the right things and to give their boys everything they need to thrive.  It’s the not knowing what’s coming next that is the hardest. Life with young kids is an alternating climb through grueling and wonderful terrain in the easiest circumstances.  They post smiling pictures of their happy boys and links to stories about autism that are both hopeful and heart-wrenching, listing feelings of parents with special needs children.  Fear, loneliness, inadequacy.

I am tempted to try and pretend that Max was enough of a stinker as a little kid that I have some idea of what it might be like to face a real parenting challenge.  Those who saw a three year old Max in action might even agree.  But it’s almost embarrassing to have had it so easy when others have such a different, frightening road.  It's not fair.

I hope Karen and Alan and Henry and Mitchell know that we are always here for them, even if I don’t reach out as often as I should.  And while the hard road Stephen Henry travelled may be daunting, I know our Henry will achieve amazing things, too, because he has wonderful parents and professionals fighting for him. 

He’s off to kindergarten this year, if Mitchell can bear to let him go.



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