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Friday, January 18, 2013

Sharing is Caring

“WOW, I see that Finbar is still fascinated with spinning things…My God he’s been staring at that spinning toy (a handheld light up toy that spins like a pinwheel) almost the entire time we’ve been talking.  It’s been a long time since Jason played with spinning toys, we’re over THAT phase.  Huh.  Glad we don’t have to deal with THAT anymore.”  In an instant, as these judgmental words carried by Mary’s annoying high pitched voice pierced my ears like nails on a chalkboard, my stomach tightened into a knot of agony, disbelief, insecurity and mostly, mother bear fury. As words on the tip of my tongue, two words that started with “f” and “b”, sprang forth, my yoga training kicked in and,  swallowing those words, I uttered in my best it’s-no-big-deal voice,  “well he just got that toy today, so he’s still interested in it.” A curt and disbelieving “oh  I thought he would be OVER that by now” was her reply and then, “well we gotta get going.”  Off Mary went on her bike with her two sons.  “Fucking bitch.” I let the cathartic words finally come out, wishing she were out of my life once and for all.
When I first started on this journey with Finbar when he was two, I befriended Mary who lived in my neighborhood.  She had a son the exact same age as Finney (Jason) and a younger infant son, Lucas, just a few months older than my infant son Declan.  I was relieved and excited to find Mary. I thought that we had a lot in common and I was eager for a mom friend that I could trust and confide in.  We had just received Finbar’s diagnosis a couple of months before so I was on an emotional roller coaster and needed a good friend.  After a few park meet-ups Mary suggested that we take our boys to the zoo together.  Uhoh.  I knew that bringing Finbar to the zoo and making him behave normally around another child would be virtually impossible.  I knew that it would be obvious that there was something “off” about Finney (for starters he walked around the zoo covering his ears with his hands and took little interest in the animals).  But I desperately needed a friend, so it was a risk I decided to take. Besides, what did I have to hide? I could always just honestly tell her that my son was autistic. I would have to start telling people at some point.  Mary insisted (I later learned that she was very much the insisting type) that she bring her wagon to the zoo so that we could pull our two boys around in it.  Nightmare. Knowing that Finbar would never sit next to another child, and God forbid if the wagon wheels squeaked he would cover his ears the entire time, I told her that was not necessary. She brought it anyway and insisted the boys sit together in it.  When it became obvious that Finbar, ears covered, would have nothing to do with her son and the wagon, I felt compelled to tell her that Finbar had recently been diagnosed with autism, adding that he was high functioning, but that he would not be willing to share a wagon with her son.  I told her quite matter of fact, like it was no big deal.  I was proud of myself for being so brave with my new friend.
Silence fell upon us. It lasted through the elephant exhibit, into the aquatic cave, back up to the sea lion exhibit and finally, on our way up to the playground, some 20 minutes later, Mary spoke again. Up to then, I was thinking Dear God, she wants nothing to do with my son and myself. I guess I freaked her out and she must be wishing that she did not have to hang out with an autistic child and his needy mother. She must be dying to get this playdate over with. Darn, I should have never said anything.  The incredibly awkward silence was broken by words that I could never have fathomed she would use to break that silence.   In a tone that implied no empathy whatsoever she blurted out, “Can you keep a secret?  If I tell you something you HAVE to swear to never EVER tell anyone, not even your husband, NO-ONE. Because my husband and I SWORE that we would never tell anyone, not even our parents because we don’t believe it to be true.... Jason too was recently diagnosed with what they think is autism. But Ted and I do not really believe that. I mean, yes, he has a fascination with spinning things, but he hasn’t stared at a ceiling fan in weeks, and…does Finbar do that?"  On and on she went with the explanations for her son’s behavior. This, as I watched Jason running away from her constantly without so much as flinching when she called his name. Unresponsive, in his own world, spinning his body and seemingly out of control at times.  I was so busy worrying about Finbar I had not paid attention to Jason’s behavior.  But there it was obvious to me that he had issues too. Mary would not let herself see that even if it became obvious to me that she needed that wagon to keep Jason under control. The conversation became a one-sided declaration of all the reasons her son was not autistic as she threw questions at me that, when I answered, only seemed to prove to her more that my son WAS autistic and hers WASN’T.  Listening to her go on and on I felt depressed at the thought that this could be my new world of friends – mothers with autistic sons who don’t want them to be autistic and don’t want my friendship.  Mothers who want to hide what their children are, ashamed and making excuses. Bummer.
 When I got home I felt overwhelmed with sadness for Mary, sadness that she treated her son’s diagnosis like a skeleton to be locked in a family closet.  In contrast, for the first time since Finbar’s diagnosis  I felt relief that I had not hidden his condition from someone. I was not ashamed. I was not in denial.  Hard as it was I was embracing who my child was. I vowed to help Mary do the same. I would still be her friend and I would help her.  Over the following two years I tried to share with Mary information, experiences and suggestions in a show of friendship and support. She reciprocated on a selective basis and never really seemed grateful for my help, always poopooing my ideas and suggestions.  But then she would often turn around and use them anyway.  Over time I realized that Mary also viewed me as her competitor in the race to recover our sons from autism. For her it was a sprint, for me it was a marathon and still is.  And she was MEAN.  Whenever she had the chance, she would point out what great progress Jason was making while silently and sometimes not silently dissing  Finbar (as in the example above). Still, I listened patiently when she called late at night to discuss her latest research and ideas (but her son did not have autism). I continued supporting her because I felt it was the right thing to do.
Eventually, when I had become involved in TACA, organizing speakers and support meetings to help parents with autistic children, I invited her to a support meeting.  Her reply drew a line in the sand for me with respect to parents like her.  She replied, whiny voice with a condescending tone, “Uh, the LAST thing I need right now Jen is a SUPPORT meeting. I don’t need to sit around with a bunch of parents and hear miserable stories. I am doing just fine on my own. Jake is doing FINE”  ‘Nuf said.  You’re on your own now laydeh.  And with that, I resolved to continue my quest helping other parents by sharing my experiences, but I would no longer put my emotional energy into her bottomless pit of selfishness.  I would carry on helping those who weren’t FINE.
In doing so I have met wonderful people (you know who you are) and learned a ton. I think about my former friend sometimes and her vow of silence. It was unsustainable.  She ended up moving away when it came time to put our boys in Kinderdgarten at our local school. Her move was under the guise of taking 6 months off to homeschool somewhere else, but she never came back to town with her family.   I later found out that she had tried to get her son into several private schools here (which seemed silly because we live across the street from a great public school with services), but Jason was rejected by them all.  She never told me that. No, when I had asked what her plans for Jason and Kindergarten were, suggesting that our community school had great support services, her reply was “Jason is FINE.”  I speculate that the thought of our circle of neighborhood friends finding out once and for all that her son had issues  was too much to bear. I am glad that she and her negative energy are out of my life as I wished.   But I hope that her life is more peaceful now and that Jason truly is FINE.
So why am I telling you this? Why is Mary on my mind?  Because last week when I started blogging again, I was touched and validated by friends and acquaintances who expressed actual enjoyment from my blogging.  Perhaps you are all blowing smoke up my butt because you feel sorry for me, and I thank you for doing that, but at any rate, I was very motivated by this.  Over the years, in sharing my story with other moms I am certain that I have helped children and their mothers in small and big ways. Whether it was turning them on to a treatment that truly helped, or turning them away from things that would be a waste of time and energy (such as applying to private schools).  It is truly gratifying to have your words taken to heart and see them help someone.  Today I received an email in my inbox that makes all this bleeding heart writing make sense to me. In a true twist of fate and faith, a mom that was so kind to me in the early days of Finbar’s autism, who ran a playgroup that he and I participated in when he was two, who made Finbar welcome when it was so needed, and who later was actually in a Church group with me and who helped me deepen my faith and draw closer to God when I was really troubled with all that Finbar’s autism meant,  this mom sent me an email out of the blue about her 4 year old son. I hope she will forgive my using an excerpt to drive home a point, but it so poignantly does:
Bobby has autism.

Yes. my boy. my precious son has autism. High functioning, with an incredibly high IQ. Wow.  But--  autism.  There is so much I know about autism. For years I worked with this population. For years I studied it.  Now it’s in my home.  In my life for a long time.  Bringing JOY and pain all in one.

Jen, Isn't that beautiful?  God is all mighty and He shows up in the darkest, truest moments of our hearts. I think back to the hardest of hard moments, and to the lack of bonding I felt with Bobby early on and my love for him now is overwhelming.  Thank you for praying for me and caring so much, it has carried me!!! Even without a lot of contact, you've been such a blessing. I can not say how precious it is to know you understand.  Really, really understand.

Your blog has been a sweet balm to our past few weeks.  Keep writing. Keep sharing.

 Take that Mary!



Liza O'Connor said...

A heartfelt blog. I wish you and Finbar the best of lives. With supportive parents he'll be fine.

Anonymous said...

Hi Jen-
Happy new year! Hope you guys are very well! On a lark I checked your blog--though I remembered you had stopped writing---"just in case"….and lo and behold!!!….there were your pearls of wisdom!! Hooray! Soooooooo glad you are sharing your thoughts on your blog again. You inspire me!!!!
Hope our paths cross one of these days-
Annie Torsiglieri