Friday, December 7, 2012

reflections from today's drive home

Another week, another birthday.

I had my birthday this week.  Thinking it would pass quietly, as many do now that I am almost "growed up," I  focused on the tasks of the day - Janneke's preschool program, Rachel's third serial casting of her feet, and groceries, etc.  Yet, that night when I went to the computer, I was overwhelmed with countless virtual messages of love and congrats, thanks to Facebook and Ralph's bold request to ask for such messages.

Considering what feels like a fight these days for stubborn joy, the notes on our FB wall were beautiful reminders of being surrounded by community.

Feelin' the love.  Thanks.

Today, I took the girls to Mac to visit with our paediatrician.  Em and Soph jumped at the chance to hang with their little cousin Aleah, and my sister Rhoda willingly hitched a ride somewhere along Dundurn St. in Hamilton and helped me out at the appointment.  Actually, Rhoda has come along so often that she and the paediatrician exchanged pleasantries first (how are you? good to see you again).

I am very thankful for a doctor who demonstrates family-centred practice.  Someday, when I can carve more time and energy, I want to devote it to working with med. students on cultivating a strong family-centred practice in all disciplines.

Our paediatrician sits down and gives direct eye-contact.  No checking the pager, phone, or watch - or reading the chart while listening to me prattle on.  No repetitive questions or me regurgitating the same info over and over. He asks questions about how the family is functioning, what support systems are in place. His definition of good health and care for Rachel and Janneke includes a whole family check-up.  Our appointment is at least one hour of his time.

I call that proactive and progressive.  We need more of that.

Today's appointment included some concerns that I have with the girls' development, so we will have a few investigative tests in the future.  Yet, overall, the girls continue to shine - with so few expectations placed on them at birth, they continue to amaze all of us in their abilities.

* * *

Part of the appointment included a conversation about soothing and stimming behaviours. For parents, this can be a challenging topic, yet the reality is, we all have our methods and vices.  How do you deal with sensory overload?

Related to sensory processing issues, examples of soothing or stimming behaviours for many children include banging ears, banging head on floor or wall, spinning in circles, finger flapping or finger flicking, fixation, obsession with order, and teeth grinding.

It is a tough topic because many stimming/soothing behaviours highlight the difference between what society says is normal and abnormal.  In fact, there are behaviours not listed which are part of the private challenges parents and caregivers deal with - ones not easy to blog or talk about.

Rachel and Janneke's stimming and soothing behaviours are fairly mild.  Yet, some of their behaviours drive me a bit nutty, and I wrestle with my desire -yet inability- to control their actions.  It's complicated: we have these daughters who come with many questions and issues beyond our understanding - and then they develop behaviours that are also hard to understand or tolerate.

Funny how we celebrate such accomplishments of standing in the pool or giving "five" with the hand, but we are not so keen on these other abilities.  But, when I step back and really think about it, I have give some allowance.  We do control so much of Rachel and Janneke day-to-day routine; they must want something to claim as their own - their own way and their own space.

I was reminded of Rachel's desire to control her space when I put her on Sinter Klaas's lap last week for a photo op.  She tried her darnedest to get away by rearing her back.

Not so abnormal.

As I was driving home from Mac this afternoon, I felt reflective; birthdays inspire contemplation. I am amazed at what we've learned these six short years - and I wonder what the coming year will bring.

I hope for open eyes, open ears, and an accepting heart - even when I feel bewildered over the changes or overwhelmed with what is the "right" way to do this or that.

Setting aside the deeper reflections, for the rest of December, we will focus on Rachel's feet, concluding the serial casting and forming new splints that may enable her to bear weight consistently. Time will tell.

I'll sign off now, ready to be soothed by the music of Sarah McLachlan's Wintersong album.

peace for your week,


Karin said...

I am sitting by the fire, had my devotions, waiting to go on with my day. I am very moved my your blog today. It is a good reflection of the Big picture and the telephoto picture of life.

It also helped me think thru things regarding our 5 yr old autistic granddaughter.

Thanks Sara
Blessed Advent! Karin

Jacquie said...

Happy belated birthday, Sara. Glad you felt surrounded. Was moved by this post - and will reread it as I think of others in my life who would benefit from your words and wisdom. Blessings in this Advent season - that Stubborn Joy will follow you to the manger and beyond.


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