So, I get this a lot.  Especially since I run in unschooling circles (and please keep in mind that “unschooling” is, at it’s heart, about following the child).   Just to be sure we’re all on the same page here: “Neurotypical” refers to a child who develops in a way that is free of disabilities of any kind.

That is not my BigGuy.  My guy was thought to have profound deafness and cerebral palsy when he was 8mo old.  We have traveled through the years of therapies, nutritional interventions, countless types of testing for all kinds of issues (non-invasive, mind you) and have landed squarely at Asperger’s Syndrome… many steps up from where we started.  I will not. ever. forget my son not knowing I was in the room.  Not looking at me for the first full year of his life.  The first time he laid his head on my shoulder–at nearly  one year old.  The first time he realized we’d left a room when he was nearly 2.  So, so far from where he is today, but things that scar you deeply and make you happy for who he is today no matter what.

He’s an amazing, AMAZING kid.  He amazes me more every day.  He’s exceptionally bright.

But that doesn’t erase his history.

So often, people see my son and don’t see his history.  So many would think that was a great accomplishment.  It’s truly a double-edged sword: you don’t see his deficits and therefore assume he is neurotypical, so if he responds based on his challenges–people don’t really understand.  They think he’s misbehaving or he’s being inappropriate or (insert negative impression of someone’s socially inappropriate behavior or response to a situation).  That’s a problem.

Of course, when I get concerned about how to handle my BigGuy’s education or hobbies or whatever, I’m often met with a rather judgmental “Leave him alone–it will all work out if you give him the freedom to figure things out.”

But those statements are made based on neurotypical development.

Is it possible that–left to his own devices–my BigGuy would turn out perfectly fine?  Absolutely.  But given his history and the current challenges, I can’t bank on that the way parents of neurotypical kids can.  I can’t just let him spend a FULL day in front of a screen because he gets aggressive and it affects his blood sugar.  I’ve had parents get annoyed with me about this–certain that I’m making these things up to justify my restricting of my kids screen time.  I can’t just assume that he will, at some point, leave his obsessions and move on to something else… or that he will sometimes be so driven to do something that he will overcome whatever obstacles are in his way to succeed.  I have no idea if he NEEDS to be directed in order to achieve or if he CAN be left to his own devices.  But in my case, if I screw that decision up, I potentially have a child that will not be able to live independently.  And that’s nothing to screw with.

It’s a serious reality that parents of neurotypical kids absolutely cannot fathom.

Because they have never seen their child incapable of interacting with the world around them.  Debilitated by nothing more than neurology.  Sitting unflinching as a book is dropped beside them.  They have never had to question whether or not their child would ever do all of the things that came naturally to almost all children.  They count the snuggles and smiles as blessings–not miracles.

They look at how far my son has come and scold me for questioning whether he will be okay long-term when he has come so far.  But they have no clue what has gone into getting him here… HOURS upon HOURS of therapies and interventions and research… the complete dysfunction of our household, which operated as a therapeutic unit rather than a family for several years… the list goes on.  But we know what it took to get him here.  We know that it was anything but a “hands off and see what happens” affair.  We know what it took to overcome the odds that so many people laid out for his life.

On one hand, I just don’t want to impose on his life.  I want to give him the freedom to be whomever he is.  On the other hand, I need to know that he can live independently–because when my husband and I are gone, there is nobody to manage him as an adult if he needs it.

Please–don’t scoff my feelings.  Don’t scold my approach.  Don’t invalidate my concerns.  And don’t judge me or my child by your history or your research about neurotypical children or the singular case of some kid who seems similar to mine that made it.  Because I don’t need people like you tearing me down in my path to helping my children grow into responsible and independent people.