I wake up while it’s still dark, my autistic son asleep by my side. I quietly scoot out of bed, my knees and ankles making popping sounds as my feet hit the floor. I hope my creaky joints don’t awaken him.
I make some coffee, check my emails and notifications on my phone in peace. I practice some deep breathing in between scrolling and checking my calendar. I take note of my son’s endocrinologist appointment coming up, knowing I haven’t figured out how to get labs done yet. There’s a virtual psychiatrist appointment tomorrow, where I’ll let the doctor know we had yet another medication trial go astray. Oh, it’s October. That means the new Behaviour Consultant can begin putting together the Positive Behaviour Support Plan, too.
I hear footsteps, and I put my phone face down on the table. With my mind racing and my heart rate quickening, I consciously feel the inhale through my nose, feel my belly expanding, and exhale from my mouth.
I open my arms wide as I see my little one walking towards me. Morning time is one of the times he will snuggle, and it eases my heart. I am conscientious about not touching his hands, feet or hair, and giving some deep pressure around the rest of him. He looks at me with sleepy, brown eyes, and asks what day it is. I say, “it’s Monday. Would you like to look at the weather with me?” just like I do every morning. His anxiety eases, as he sees no rain in the forecast, which means no chance of thunder.
He’s ready to play, so I get his first medication prepared. I hear more footsteps. Time to get my ADHD daughter prepared for a bus ride to school. I wash her chewelry, and plant her lunchbox next to her backpack. After all, we’re working on her skill building too. She puts it in her backpack herself. I remind myself that her chewelry are getting worn out after only a month of school. I better look at the sensory budget. Not that it matters. She needs it.
Off to school she goes, and my son relaxes a bit. He likes a quiet house. Except the internet company is coming today to work on our wifi. He does not tolerate workers at our house, let alone their loud tools.
I ask if he’d like to go for a walk in town, and would he like his push chair. He says no, and requests his noise canceling headphones. Of course, they’re already packed, along with two drinks, multiple snacks, the iPad, hotspot, my boots he insists on wearing, and coffee that’s no longer hot. That’s ok, hopefully I’ll be able to make time for some espresso that costs money we don’t have. But so much of this lifestyle is about finding pockets of happy. I get him into his car seat, which is another reminder that disability and insurance won’t pay for the $5000 car seat he needs. Hopefully those Amazon harness clips continue to keep his chest clip in place. Holding onto hope. And breathing deep.
We go into town, lovely older ladies comment on how he’s wearing my garden boots, and they think he’s much younger than he is. I smile, and encourage him to communicate for himself. They look at me, coming to understand that he’s disabled. I smile again. And breathe deep.
We go to the playground, where he uses the adaptive swing. He loves the vestibular input, sometimes a peaceful smile across his face, sometimes a joyful giggle bubbling out of him. Both make my heart content.
We go home, he plays cars and trucks while I confirm doctor appointments on the phone. I eat some food, and prepare his meal too. He’s learning to use a spoon with his peaches, which is super exciting! We watch Numberblocks together while we eat, since it helps him get those extra calories he needs.
His sister and dad come home later, the house has a new dynamic. I dedicate time to his sister, making sure she’s getting the 1:1 care she needs. I ask about her day, did she use her headphones during the fire drill? Was she too overwhelmed at lunch to eat?
The kids get showers, and I’m so relieved that the shower head being lowered with an inexpensive gadget solved a problem. Anything that solves a problem deserves a trophy.
I get his nighttime meds ready, and prepare him for toothbrushing. I’ve bought every novelty toothbrush, every flavour of toothpaste, tried sensory work beforehand, tried letting him brush my teeth, tried timers. He just all around hates it. I reflect on the past dentist visits at the children's hospital where they’ve strapped him into the tumble form chair against his will. I don’t blame him for hating all this. I’ve abandoned so many of what the doctors have recommended, and am now in favour of gentle, patient approaches, where I respect his autonomy and self/advocacy.
I do some deep breathing prior to approaching him with the toothbrush. I want to be sure I’m calm and following his lead. If I’m anxious or impatient, this all comes crashing down. I wait until he’s ready, and stay positive about what he’s able to tolerate.
I say goodnight to my husband, who isn’t getting much attention through all this. I hope he understands. Hanging onto hope.
I tuck my daughter in, and give her all the extra time I possibly can. She’s such a delight, and I want her to know she’s worthy of love and good things.
I lay down next to my son, and we chat about the day. I think about how he didn’t start speaking until he was six years old, and all the professionals told me he’d never speak. Now I’m trying to get him to settle down for sleep. “I’m all done talking today. I love you, goodnight.” Such irony. But also, a reminder that my hope is not misplaced.
My eyelids are heavy. I don’t even make it to my own bed. I fall asleep, until 2 am when insomnia and anxiety strike. And when it does, I’ll breathe deep. And hold fast to my hope that anchors my soul.
Written by Natashia Kletter.
Natashia is the mum of a disabled and autistic son and daughter with ADHD. She designed an assistive communication system for nonspeaking children, inspired by her son. Her communication soundboard books are helping children all over the earth communicate efficiently and joyfully with their families. You can see all seven books in the series at www.iwanttotellyoubooks.com and watch her edutainment reels at www.Instagram.com/iwanttotellyoubooks