I’ve said a lot of nasty things about most of the books written about special needs parenting, but I’m happy to report I just finished a fantastic story about Owen, a boy with autism, and his family’s journey:  Life Animated.  It was so real, cut so close to home, and unlike most of the accounts I’ve read it was brutally honest.  No talk of a cure, no “Oh autism is the best thing in the world if you just learn to look at it that way!” It was just a family doing the best they could to navigate a life very few people can understand.  I loved every single word.  The ones that touched me most came from Owen’s brother Walt.   As a counselor on the opening day of camp, he delivered a speech to connect with a new camper who had 2 younger siblings with autism.  In the speech Walt said, “Growing up with Owen was very hard and I think it would have been a little easier if there was someone who really understood.”  That’s how I feel sometimes.  

I am an incredibly fortunate woman.  Kevin is in a wonderful program in a great school surrounded by love and acceptance.  The girls spoil him shamelessly and  the boys don’t take any of his shit.  Camp is my favorite time of year for just this reason.  He is such a different child when the harem is not around.  The ringleader (I call her Leela) actually walked Kevin over to the boys on the first day of upper camp to instruct them on how to care for him properly.  “He needs this, don’t forget that, if he does this make sure you do that, one of you will need to open his salad, he likes extra dressing, etc. etc.” Then she turned to Kevin and said,  “You’re going to be with the boys all day today Kevin but it’s alright you’ll be fine, be good!”  Then she walked away, but not before giving the boys a rather menacing I have my eye on you glare.  For a long time I was afraid the boys in Kevin’s grade would resent him for all the female attention he gets but thankfully it seems to have only instilled in them a deeper disgust of women altogether and a feverish desire to “toughen him up.”  One day I was biking to the township office and realized his camp group was biking straight toward me.  I pulled over and hid in the bushes so he wouldn’t see me and his counselors wouldn’t think I was a camp stalker.  Anyway, right in front of my bush Kevin wiped out and started crying.  My first instinct was to jump out of the bush but then I’d not only look like a camp stalker I’d look like deranged so I stayed hidden and prayed a counselor would come to Kevin’s rescue.  But instead, Kevin got Eli.  Now let me tell you something about Eli: he’s a very manly guy.  He was a manly guy in pre-school. Eli once told me  the best way to make sure no one EVER touches your glue stick is to kick them in the shins.  Anyway fast forward 5 years, Kevin is lying in the middle of the road like sobbing and Eli is the first man on the scene.  He picks up Kevin’s bike, stands directly over him and tells him to “man-up” which Kevin does immediately.  Eli then instructs him to stop crying, walk it off, and get on his bike.  And just as I started to think Eli was being too harsh he said, “Good job Kev.  You’re tough, right?  You don’t need those stupid girls and their extra salad dressing. let’s go!”   As I watched them ride away through the pine needles I thought “Rachel you are so lucky.  These boys are so good to Kevin.   Now get the hell out of this bush before someone sees you, you already have a reputation for being unhinged.”

I’m lucky.  But just lately I’ve been feeling quite lonely because I’m dealing with a situation I fear no one could possibly understand.  I can’t help but wonder how my life might have been different if someone had walked into it and said…………

 “My son screamed all day too.  He hit me,  my daughters, and our animals.   The cost of behavior therapy ate up my entire teacher’s salary for the better part of 3 years.  I had to leave a job and people I loved in order to afford the medication that kept him from harming himself and us.  The school called me at work every day, sometimes twice a day because he became self injurious and the staff had to physically restrain him.  I endured the humiliation of a school in lockdown because my son threw a tantrum in the hallway and urinated on the walls.  3 years ago we went through a lovely period where Kevin decided he wasn’t potty trained anymore.  He smeared his feces all over the walls of my home and the school bathroom.  I re-trained him, we went 2 months incident free, and just when I thought it was safe to go back in the water he painted the wall of a “friend’s” bathroom with his feces.  I apologized profusely and scrubbed that bathroom top to bottom as best  I could then offered to pay to have it professionally cleaned but the “friend” sweetly refused insisting it was no big deal.  She then took it upon herself to tell the entire town. Perhaps because she felt I wasn’t humiliated enough?  Who knows.  Needless to say, we aren’t friends anymore.  I’ve lost many friends over the years.  The point is Rachel,  I understand what you’re going through and I know exactly how you feel.”

But alas, as you all know, I never did find that special person which is why I’ve decided to BE that special person to whomever is feeling as lonely as I sometimes do.

If you are a “club member”  and this pandemic has knocked you down so hard you’re afraid you might never get up, I want you to know I feel the same way.  Kevin (like all our children) thrives on routine.   When it is lost he becomes confused, when he becomes confused he gets angry, and when he gets angry he becomes aggressive.   I have run out of my home to escape his rages on several occasions to keep myself and the dog safe.  We’ve lost everything that keeps him feeling secure and engaged:  camp, Special Olympics, fitness class, theatre, and now school. Kevin’s entire class was quarantined this past week and it has been nothing short of a nightmare for us.  My poor son has no idea what’s going on, only that he’s lost everything he loves, and he’s taking it out on us in the most awful way imaginable.  Yes, I’m having a very hard time.  Just yesterday he chased me around the house throwing tampons at me, which is hysterically funny now that it’s over.  That’s how I get through my life:  laughing at things most people do not find funny.  Also, I write this blog for you because no one was ever there to write it for me.  I don’t know who you are but I know your life is similar to mine and you feel like no one understands but you’re wrong,  I do. I know you’re having a very hard time right now and you’re terrified things will never get better but you’re wrong, they will.  I know because I’ve weathered some pretty horrific shitstorms with my son over the years and they all ended eventually.  Sometimes they ended with me covered in urine or knocked to the ground with a broken tooth, and sometimes they ended with me standing on my own two feet.  Some of the storms lifted me up and swept me miles away from where and who I wanted to be but eventually I learned that when the dust settled I could always find my way back. 

This has been a hard year:  it’s almost over.  This has been a very hard week:  Kevin goes back to school Wednesday.  I’m going to get through this just like I’ve gotten through everything else. So if you’re out there weathering your own shitstorm I pray it gets a little easier knowing there is someone out there who really understands.  Hang in there.