Dear future caregiver of my son with autism

This is a post by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum. Kim also has a blog about her family.

Dear caregiver to Justin,

If you’re reading this letter (and I so hope you are) it means I’ve never met you and never will, as I’ve gone kicking and screaming to the Great Beyond (wherever that may be). If you’re perusing this after I’ve just passed I’m sure your co-workers can tell you about me, as I was a staple at your group home, hopefully a help with my homemade chocolate chip cookies and my jambalaya (the only two things I make well) and my frequent visits to check up on my boy.

If you’re reading this thirty years after I’ve gone, I’ll have to believe my legend died with me.

I left explicit instructions to your predecessors about Justin’s lifetime care, hoped with all my heart they’d be honored, and at the very least that all those who care for him will read this missive from me.

It’s good to have hope.

You see, whether Justin’s fifty now or ninety-nine (it’s possible, his relatives have lived ridiculously long lives) I know you see before you a severely autistic man, predominantly non-verbal, with either OCD or just a really strong penchant for perseveration on the side (I gave up caring which it was during the Obama administration). He is fairly tall as was his father, and although now his hair is streaked with gray during his younger days it was a dark blond, like his mother’s before she got to the salon. The last time I saw him he still had a dimple on his left cheek, and his smile is transcendent, no matter what his age.

I know. It only took me four paragraphs to brag.

I want you to know although I love my son passionately I don’t have blinders on where he is concerned. Just so you know a little bit about me I used to teach before I had my kids, and nothing renders you more objective where children are concerned than a stint in the classroom. Justin is kind, and sometimes playful, and generally happy with his life. He is also stubborn, hyperfocused on getting his wants (not necessarily his needs) met, and his OCD (or whatever the hell it is) can drive a person to drink the good stuff.

See, I can be objective.

I want you to know that I am confident at times his care will drive you crazy. It may be that sixtieth pretzel he wants, or a DVD that just doesn’t work anymore that he insists on playing. He may want to leave after half an hour from the extremely fun place all his co-habitors are loving (which got you out of the group home for the day), and there may be no convincing him that a water park in August is more fun than his own living room.

Hell, you may be struggling just to get him out of the house.

Please know whatever manifestations of difficult you see, it wasn’t that his father, myself, and a thousand professionals didn’t try to ameliorate them. Back in the good old days of his toddlerhood (not really so great even with a half century of perspective) I girded my loins and took that kid places, with the half moons of his little teeth marks bearing witness to my pilgrimages. Sometimes I could barely get him in his car seat, but stubbornness like autism is hereditary (yes it is!) and I persisted so someone who weighed less than my right thigh (it’s the bigger one) wouldn’t keep me prisoner in my own house.

I have my limits.

I want you to know we tried. We finally got him to crave sleep (that one took a few years, yes you can thank me now), to eat things that weren’t carbs including two veggies (that one’s going on my tombstone, I am still so proud), to learn how to dial back some of the innate aggression that occurred when he didn’t get his way. We taught him to use a fork (okay, sometimes) and to understand that leaving the house is often fun, and should last more than thirty-seven minutes. I encouraged him to go on errands with me and not try to purchase everything he saw (just a heads-up, that will not work at Walmart or Toys R’ Us, be warned).

My boy has his limits too.

I want you to know I hope he’s good for you, and I wish you patience when he’s not. I want you to know that his primary emotion is joy, and if he’s having a meltdown or a crabby day (who doesn’t) he will eventually return to his happy place.

Yup, I promise.

I also want you to know how many people loved him - family members, our friends, his teachers and therapists. I scrapbooked his entire childhood (almost as therapeutic as wine) and if you have a few minutes, please peruse his life. You will see pictures (and I’m being objective again) of a beautiful baby, a sweet toddler, a handsome teen. You will see photos of an increasingly aging and tired-looking blond chick (who was cute once too) who in most photos is holding him or his hand, and smiling.

I want you to know that smile was genuine, no matter what had just transpired or what challenges we were about to face. I loved him, with all his difficulties, his perseverations, his intransigence. He loved me back, with his daily kisses for no reason, the ten minutes we cuddled each morning before I could get him out of bed, his hugs as I read him his Eric Carle stories nightly even at age twenty-one.

I want to thank you for whatever period of time your paths cross, for your perserverance, and I let myself hope, your kindness toward my boy.

So please, when you’re frustrated with him and thinking you’re just not paid enough for this (and you’re not), please know this. Take it to heart. Remember this, for him and for me.

We “got” each other.

He was my greatest challenge, my soul, my aching heart, my joy.

I loved him.