I woke up on the wrong side of the bed today. For reasons I couldn't put my finger on. Just annoyed, frustrated, and sickofitall. Dylan's helper comes at 10:30 and there are sticky countertops and a pile of laundry and I need a shower. And it all falls in on me. It was one of those days that should come with a dozen orange cones laid out around me, warning innocent bystanders to avoid. I briefly contemplated faking sick so Matt would have to stay home and I could stay in bed with the covers over my head. But my conscience got the better of me.
Stupid conscience.
We have come so far on this autism journey. Dylan is joy-filled and curious and talking up a storm, even if only repeating what others say most of the time. I love the words, and the occasional songs I hear streaming from his mouth because it wasn't so very long ago when it was only silence. But with all the triumphs, the autism is still there, rising up as stims and squeals and an occasional frustrated meltdown. It persists, pushing us to fight harder and try more, even though we would rather just find a soft chair and a quiet corner and perhaps a nice novel. The autism will not yield, and so the soft chair will have to wait.
Every so often I find myself on youtube watching videos of low functioning autistic adults. Matt says I should avoid this, but I can't help myself. I need to see. If for no other reason than to remind myself why the soft chair has to wait. I need to see why I need to fight, because sometimes I am just soft and mushy and wimpy and tired. Since I was already in a rare mood today, the videos tipped me over the edge. I cried the kind of cry that doesn't stop until it's done. The floodgates opened, and I realized why today was such a difficult day. Dylan turned six yesterday. It shouldn't be a cause for tears. He is such a blessing. But fear of the future rises up in me with every passing year.
How long can I guard his innocence against the cruelty of the world? How long will he retain his joy? How long will he be safe? With each passing year, the protection of his small-ness fades. As a young special needs child, he easily steals the hearts of his caretakers with his baby face and innocent smile. But will an older, taller Dylan still be able to win them over? Let's be real. It isn't fair or right, but cuteness gets him places. What happens when that tiny frame is replaced with long, skinny, gangly legs and the plump cheeks are replaced with pimples? My stomach turns and my heart beats fast at the thought of the long and scary road ahead.
I am suppose to do this whole one-day-at-a-time attitude. I know that. Live in the moment and enjoy his sweetness. And I do, most of the time. But today there was a crack in my confidence that grew into a dark chasm of fear and dread. In the deepest part of my heart I fear things that moms should never think of or ever dare to say out loud.
What if I can't manage him someday? He will continue to grow in size and strength, and I will continue to weaken as age takes it's toll. And what if the autism wins? He is sweet and kind and not at all aggressive and I believe he will always be that way. I believe he will continue to learn and eventually match his peers in intellect. But what if I am wrong and it all goes to hell? What if I am too weak and the autism is too strong?
As all of this floats around in my mind, I retreat into the words of
my favorite book, which teaches me to pursue eucharisteo.
Deliberate Thankfulness. I read the author's words afresh and try to soak it into my soul.
Gratitude comes
before Provision. Christ gave thanks before partaking of the bread,
before He broke His body. And I am asked, also, to give thanks not
after, but before. To be grateful for what I don’t yet understand, as
an act of trust. This is hard… this was not on my agenda for today. And it was hard enough for me to find gratitude for sunshine.
Now, I’m looking for it amongst death and rebellion and boogers...
... It is slight, but I feel it already. The choice. And I already begin
to understand this to be something more than simply counting my
blessings. It’s making a choice. A choice to change my perspective.
My reaction. My experience. Eucharisteo is the difference between
wretchedness and beauty. It’s what Christ did to prepare for His own
death. Gave thanks. Broke bread. Chose joy in the experience. Even
in the ugliness of that experience. And it feels, ever so slightly,
like growth. - Ann Voskamp
There are those for whom eucharisteo seems to flow from their very pores. They are peaceful and joyful in all occasions. This is me, except the exact opposite. Every scrap of peace is deliberate. Without a constant resteering of my attitude, it is entirely absent. Eucharisteo for me comes as naturally as words for Dylan. I want it. But I have to think hard and work at it. So I suppose if Dylan can fight for words, then I can certainly fight for gratitude. And for the rest of today, this is my goal.
I set my mind on good things to try and get out of this funk. The first one that comes to mind is a newfound interest in cooking Dylan has developed. Not to brag, but I am convinced he will be the first autistic Gorden Ramsey.
It could happen. And so I decide to slow myself, and allow him to participate in the preparations today. He gets the skillet from the cabinet and places it on the stove. He retrieves the eggs from their shelf in the refrigerator. He watches intently as I crack them, counting one, two, three, four. He takes the fork and whisks them together, then hands them over to be poured into the pan. He sprinkles salt. He helps with the twisting of the can opener for a side of fruit. He takes his full plate with both hands and gingerly walks across the room to his spot at the table. I am thrilled with his attentiveness, and a little pleased with myself for giving such a nice lesson in the art of the scrambled egg...
Later while I was distracted, he decided to take his culinary journey a little further than I anticipated. Using his new skills, he decided to crack 8 or so eggs onto the floor. I caught him in the act, carefully removing each one from the carton, cracking it on the edge of the counter, prying the shell open and depositing the contents onto the linoleum. Then neatly stacking the shells in a pile, just like he saw mom doing. It was pretty skillful, as far as messmaking goes. And I realize I'll need to put a bit more emphasis on the importance of a pan in future lessons. Note to self.
And even all of this this is reason to hope. He has interests, and when I engage him in them, he is enthralled. No stimming, no squealing. In these moments, the autism is silenced. So we will run with these moments. Instead of fearing the future, I can imagine a day when Dylan is grown and wearing a chef's
shirt with his name embroidered on the chest just like Gorden Ramsey. He is chopping and dicing
and salting and sauteeing.
And all of his eggs are landing in a pan.
And he is smiling.
