The day with my daughter is over. She has been fed for the last time, bathed, and tucked into bed. Well, it’s mostly over. She is sleeping in my bed, so we may yet interact throughout the night. And, well, I guess with my *one* child-free hour of the day I am choosing to write about her. (Am I truly insane or just a glutton for punishment?) So… I suppose it’s hard to say it’s actually over. Sigh.
But it doesn’t much matter. Because it’s never really over when you have a special needs child. It’s not like raising other children whose childhoods’ race by at a dizzying speed. “She’ll be grown and gone before you know it!” says the well-meaning checkout lady when I say I’ve got to hurry home to get my little girl off the bus. I smile and nod at the kindness intended. I don’t bother to mention that my “little girl” is solidly into her teen years, but still has the reasoning skills of a preschooler. I definitely don’t mention the temper tantrums of a toddler. And I’m certainly not going to go into the fact that those tantrums are now fueled with the hormones of a teenager!
No, I don’t go into it with the cashier, but I do find a wry smile making its way to my lips as I juggle my private thoughts. I am not having my own personal pity party, either then at the store or tonight at the keyboard. This is just how I process best. When I am exhausted and irritable and seem to have an edge about me that I can’t quite identify, sometimes I just need to talk it out. Or in this case, type it out. Once it’s out there, pinned down, and NAMED, then I can find the right box for the issue and put it to rest for the day.
The cashier comment was actually a few days ago during one of the last days of school. We are now into summer break and each day is its own marathon. She doesn’t have hobbies. She doesn’t have friends. She reads a little, but not independently, and certainly not for pleasure. She watches a few movies, but not with the zeal of the average American kid. Not understanding the plot, she grows bored and wanders off. She wanders off to find, “Mommy! Mommy, how soft is a Cercropia moth? Would a raccoon eat our chickens at night? What color was my vomit when I threw up blood?”
Interesting questions, you say? No. They are not questions. They are scripts with scripted responses. When my girl asks about the Cercropia moth, I am duty-bound to say, “It’s sooooo soft.” In regards to the raccoon and the chickens, my required reply is, “If they have the opportunity.” And don’t worry; I’m not going to go into the puke question. But please know, that it’s one of her all-time favorites! And if I fail to provide the appropriate reply within an acceptable amount of time, she will happily get louder and closer to my face, until I do, thereby completing the circuit, and putting the anxiety of autism to rest … for now.
This child could ask her questions to infinity and beyond, but I have my limits. Somewhere in this day we must complete something with a point to it. To that end, we spend some time this afternoon putting together a 100-piece puzzle. I assemble the boarder and then spoon-feed her pieces that will fit, suggesting innocuously, “Why don’t you try it right there, honey?” She is moderately pleased with herself for completing the fairy’s wing. But the next piece she chooses on her own and it does not work where she is sure that it SHOULD work. She becomes angry and tries to force the fit. When the cardboard shape bends underneath the pressure, she throws it and starts to yell about how, “This stupid puzzle doesn’t work!”
The cries of frustration quickly morph into genuine rage because she is now convinced that someone is laughing at her for her mishap with the puzzle piece. No. One. Is. Laughing. It’s only the two of us here, and BELIEVE ME, I am NOT laughing. But the facts don’t matter much to this tormented soul. She isn’t really talking about today, anyway. She’s thinking about some point in her life when someone has laughed at her for making a mistake and now each new gaffe pokes at the old wound. “How would you feel if someone laughed at you?” she asks in an odd sing-song voice. She repeats the question, rising in inflection and pitch on the second round. She tailspins into a full-fledged meltdown, accusing No-One-In-Particular of laughing.
I do not laugh. But I do groan. It’s time for me to get dinner started and I don’t feel like dealing with another of these fits. But then, who asked me? She spits on the puzzle and winds up in “time out” on the couch. She knocks over a chair on her stormy path to the sofa and accuses it of hitting her. She spends the next 35 minutes or so screaming and crying and threatening to do everything within her power to punish that chair. It doesn’t make sense. It doesn’t have to. It’s Attachment Trauma. It’s Intellectual Disability. It’s Autism. It’s our life.
As I type out a sampling of the frustrations of my day, however, it occurs to me that no matter how tired I am at the moment, I am actually grateful for this opportunity to love as I have been loved. The truth is, I tantrum and obsess and blame and re-live old wounds, ad nauseum, too. But none of that changes how God loves me. He promises to never leave me, yet gives me distance when I demand it, and somehow even manages to draw me on to the next stage of life whenever I am willing to go. God is good to me when I am totally undeserving and obnoxiously stuck in my own insanities! Hmmm. This sounds familiar!
With His goodness in mind, I am acutely aware that it is actually a privilege to be good to this person in my charge. Moreover, she is even more His child than she is mine. And it is certainly a privilege to be good to His child! This line of thinking brings peace to my clamor and restoration to my weary soul.
Well, I’ve stayed up longer than I intended, and now it’s late. But I do feel better, so it was worth it. I’ve painted a picture of a day that doesn’t make much sense, in a life that doesn’t make much sense. But somehow, in the painting, I’ve managed to make some sense of it, if not in my mind, at least in my heart.
But as I say, it’s late, and mornin’ it’s a comin’. And with it will be the voice of my dear daughter, right up close in my face, asking about the softness of a Cercropia moth. I’d better get some sleep so I have the patience to kindly say, “It’s soooo soft!”
Thank you for sharing, your words will bless many
Thanks, Jess. I hope so!
I adore your daughter. She makes me smile, but more than that, she has taught me so much in the short few months I have had the privilege to know her. You are amazing, as a mom and as a person.
Thanks so much Stephanie. We are so grateful to have you in our lives!
Thank you for sharing a bit of the day in your life with that precious girl. I laughed and cried soaking in the scene. Love that girl of yours and her mama!
You love us both so well, Kendra.
I miss you more than you could ever know. I miss hearing about moths, butterflies, storms and tornados. you are a beautiful soul. You exude strength and wisdom like no one else I’ve ever known. God will use you here just like he uses you on everywhere! I will be reading and cheering you on!
Profound, somewhere between heart breaking and fulfilling.
Your earthly father with limited abilities but unlimited love…
Thanks so much, Dad. Your support is amazing.
What a beautiful writer you are! I’ll look forward to MORE!!
I’m never more aware of my own selfishness than when I read accounts of life with a special needs child. Tiffany told me about your blog and I find you to be such an expressive writer. I have concluded long ago that you are just a wonder of grace, and your superpower is finding beauty in every single awful thing. Sending you hugs!
Thanks so much, Larissa. And now I’m sending hugs right back your way!
You nailed her spirit!