Dear Bobby and Grace…

A lot has happened in the past month and a half, and I’ve been -I admit- cocooning and trying to navigate the changes.  My father died on a Thursday in mid-February, and the world has been a whirlwind of unexpressed grief since then.  TGG moved out to start his life as an independent household elsewhere, and that hasn’t made matters less complicated.  We’ve managed, mind you.  We don’t think TGG’s absence is a bad thing for anyone, but helping J adjust has not been the easiest task to handle.  Absence, it seems, has been the operative word lately.  My father’s absence from this world (although expected,) and TGG’s absence from our household (although anticipated) have brought on change that requires emotional fine-tuning.

I’ll say that J has gone through several stages of grief.  He skipped Denial because there was no denying TGG had packed up and left without having a conversation with his brother; the Anger went fairly well.  Target (the last place where J had seen TGG working) became an Angry Place, and we suddenly (and, thankfully, briefly) relapsed into impatient tantrums when at the store.  Never mind that it was J who wanted to go there; grief doesn’t really make sense at times, and our reactions to it don’t have to make sense either.  The Bargaining came in the shape of a very strict flight plan when visiting Target (even at J’s request.)  Depression, like Denial, was skipped and we went straight into Acceptance.  After a month of not seeing TGG, J felt awkward and uncomfortable when we got home from an errand to find our oldest packing things up into his car.  The hug was similar to Michael Corleone kissing Fredo Corleone…the lines had been drawn, and TGG now knows that J felt betrayed, not so much by the “moving out” as by the not having a conversation about how things were going to change and why.

Let’s say that TGG doesn’t owe J explanations.  Explanations, however, would have been nice.  TGG made the classic mistake of thinking that J wouldn’t understand, and J -obviously- felt slighted and will take his time in finding a happy medium between the way things were, and the way things are now.  He is, however, finding a new “normal” here, and we live in a household of three quite contentedly.

Change looms over us.  It hasn’t been easy, but it’s getting done.  We are looking at the brighter side of absences.  My father, I tell everyone, is no longer suffering the overwhelming helplessness caused by a stroke.  The last few months of his life, within the framework of the last two years, were grueling for him and his wife, and there is a strange sense of peace that comes at the tail end of loss.  No, I’ve not yet reacted to it, thank you.  I’ve almost  caught myself about to crumble, but day-to-day life suddenly takes over, and I refocus.  It annoys me that I have to refocus, and I have promised myself that I will let go of the need for some control soon, but it keeps getting re-scheduled due to the impending end of the school year (the last school year ever,) and the re-structuring of our home life.  I have been trying to make sure that J understands that “being us three” is not a tragedy.  It’s just different…  This takes a lot more effort and energy than it would for a “regular” family.

I tend to introspect about that, as you well know.  I think about the whole “regular” family idea, and I try to make sense of how it would be “easier” for us to be one.  The conclusion I reach, again and again, is that I don’t know how it would be if we weren’t as we are.  We don’t know what life without Autism would be.  We’ve never really lived that way, but we’ve seen it done.  Take away the minivan full of kids being carted to and from extracurricular activities, the sleepovers, the vacations at Disneyland, the hopping on a plane to go on a family trip, the Christmas mornings, the once-a-year visits to the doctor, the tantrums at the store because a Lego isn’t being purchased, and you have our life…  Well, leave the tantrums at the store.  They don’t usually have a reason, but there are store tantrums…and they are judged like the tantrums of the neuro-typicals aren’t because, in our case, they are obvious reflections of a distinct inability to parent.  (It couldn’t possibly be a disorder that affects neurological development that causes them, could it?)

On Friday I read, with the same interest as anyone else who has a child in the Spectrum, that Robert De Niro and Grace Hightower have a child in the Spectrum.  I read this in the context of Mr. De Niro asking to include, for the first time in the history of the Tribeca Film Festival, a documentary called Vaxxed: From Cover-Up to Catastrophe.  The documentary was directed by Andrew Wakefield, and Mr. De Niro was hoping to start a conversation regarding what is a very personal matter to him and his family.

The backlash didn’t take long to start.  I admit I was not particularly impressed by Mr. De Niro’s willingness to give Wakefield yet another platform from which to spread his views.  Having Mr. De Niro, who is respected and admired in his field, give credence to a documentary of this nature would support the arguments used by the anti-vaxxer movement to justify skipping immunizations.  Pulling the documentary, after reviewing its content and finding fault with it, supports the conspiracy theories espoused by the anti-vaxx community.  It has become a damned if you do, and damned if you don’t quandary.

This is what I want to say to Mr. De Niro and Ms. Hightower…

Dear Bobby and Grace,

We know how you feel.  This unexpected bomb of inscrutability was dropped in the midst of your lives, and you’ve been trying to figure out why since then.  We’ve all been there.  We all wonder.  Some of us blame it on one thing; some of us blame it on another.  We are all being, whether we realize it or not, judged by people who don’t have this situation, and there is -even if it’s not called THAT- a pointing of fingers because we vaccinated our kids, fed them gluten and casein, had a glass of wine before we knew we were pregnant, lived near contaminated water, didn’t feel overjoyed when we realized it wasn’t the flu but rather a baby we were not yet ready for, and so on and so forth…

We all want to have the conversation.  We all have, in one way or another, tried to have the conversation.  I don’t know about you, but I have often been questioned as to why my son is in the Spectrum.  People often have offered explanations and reasons they have read/heard/surmised from other sources.  If you’ll notice, a lot of these people who have all these opinions don’t have children in the Spectrum.

It’s hard, I know.  Your child, whether people realize it or not, becomes a poster child for what you wouldn’t want your own child to be.  They don’t vaccinate “because of Autism.”  That totally sucks, you tell yourself.  You’re wondering why there can’t be a conversation and you realize that it’s because of the anger.  People who don’t have children in the Spectrum are angry that they might end up with one if they prevent communicable childhood diseases.  It’s a “conspiracy” because we, the “dissatisfied,” “burdened” parents of “damaged” kids, don’t want to be the only ones.  Big Pharma won’t rest until it makes ALL OUR KIDS damaged.

I don’t know you, or your son, but I know he’s not “damaged.”  He’s just the way he is, and it could be that there IS a link between a hereditary sensitivity to certain environmental factors, or that it’s just hereditary, but he’s your kid and that’s all that matters.  If he is, as the press has speculated, 18 years old, your work is about to change.  I’m sure your resources provide opportunities for him that are not par for the course with other individuals and families.  Still, the game is changing for you, too.  Your life, I know, hasn’t been the same since you were “told.”

We out here know.  You have resources we don’t have, but we are all the same when it comes to this “thing.”  We worry about the same exact crap, even if it is to different degrees.  Your heart, Mr. De Niro, was totally in the right place…because, like the rest of us, you want to know, and you want a conversation, and you feel like your hands are tied a lot of the time.

We know.  We hear you.  Our lives, just like yours, are full of constant route recalculations, fine-tuning, what-ifs, oh-nos, uh-ohs, unexpected alterations, quirky developments, head-scratching moments.  We live to the fullest, and some days it’s not in a way others -who don’t have “this” in their lives- can comprehend.

We are not less.  We are not bad parents.  We are not to blame.  We do our best to open a door that will help others understand, but…the world is designed for other things.  We have, in a way, adjusted our behavior, our worldview to that of our children, and we discover that we sometimes can’t quite communicate in a way that others understand.

You are getting flogged for one thing, and thanked for another.  You chose the give a quack a platform and you were slapped for it.  You are now being thanked for pulling that rug out from under Wakefield’s feet.

Yet, this morning, your day was just as it usually is with your son.  You have navigated, negotiated, tried to help, tried to encourage, tried to follow whatever goals you and your son’s team have decided to work on…

Life goes on…hobbling some days, and bouncing others.

We know, Bobby and Grace.  We know.  We are now listening to you.  Tell us what you think.  Help us say what we need to say about these young adults in the Spectrum…

You can totally do this, guys…