Additional Needs

Mid-day Gratitude’s and Challenges

Posted by Kara Melissa on 14th April 2020 Additional Needs, Advice & Support, Disabilities

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The kids and I have just finished our lunch on the back deck. The sun is shining and I know we are lucky to have a back garden and outdoor space to stretch our arms and legs and enjoy a little bit of nature during this period of self-isolation and social distancing.

We are lucky to have each other.

We haven’t done any online learning today. We haven’t been on any virtual museum tours, math or reading websites. We spent the better part of the morning with me making an attempt to place an online grocery order and the kids watching celebrities read to them from Storyline Online. The order didn’t go through. They had three books ‘read’ to them. Yesterday we spent way too much time with screens, so today we are taking a break. Mostly. It’s hard when visiting with friends means more screen time too.

My daughter, Tallula, has painted florescent rainbow stripes on the back-garden fence and it brightens everything. I put the vintage sheet with yellow roses over the dirty cushions on the patio couch and we choose music from Seb’s iPad to sing along to in the sun. I rake up leaves into big piles. We roll through the garden spotting purple, yellow, and white crocuses open in the sun.

Getting Sebastian, to the back garden in his wheelchair is a bit of an obstacle course. I fold up the ramp at the front of the house to navigate over the raised corner of the front garden without tipping his chair forward or bumping into the fire bush, more skeleton than bush. We manoeuvre past our neighbour’s large basketball and hockey nets, situated in the centre of the shared alley. Later the basketball net falls over in the wind, blocking our path completely.

Tallula points out both the blooming flowers scattered throughout the garden and Ewok’s dog poo. Sebastian is uncomfortable from his morning blend, but I try to clear up the garden anyway. Sebastian’s dog, Ewok, runs up to give him kisses and Seb settles for a moment.

A pair of chickadees swoop down just over Tallula’s head and she screams in horror, as if bats in a cave have been caught in her gnarled hair. This sets Sebastian off, and he is now inconsolable. I will have to enlist his dad, working from home, to help calm him completely. I feel lucky he can take that break to help me in that moment.

I wash my hands for the umpteenth time and take over with Sebastian. I take his growing almost twelve-year-old body out of his wheelchair and carry him up the stairs to the deck and into the house. I vent his tummy to get the air out and give him a toileting break. He wouldn’t want me to share this, but it’s an important part of the picture of our day. Due to the pandemic, we’ve canceled all caregiver support.

We need to ensure Seb stays healthy.

We return to the garden where Sebastian feels calmer now and I rake the leaves while he watches his sister paint. The sun is still shining. Sebastian and Tallula’s dad joins us on the deck after lunch, giving me a half hour break to do something for myself. I find a quiet place inside and take some deep breaths to centre and then do some writing. I feel good in his moment, refueled. Ready to take on the second half of the day.

I carry Sebastian down the back-deck stairs and we join Tallula at her painting station. We cuddle up on the patio couch and read The Fantastic Mr. Fox by Roald Dahl. Ewok comes over to give Sebastian kisses and lays at his feet. We read for nearly an hour.

Sometimes it’s one day at a time, and sometimes, it’s just hour by hour. Today we finished a book in the middle of the afternoon with the sun beating down on us. We do what we can with what we’ve got.

Today, it’s a seesaw that just might balance out.