Wednesday, January 29, 2014

Snow Storm

For most families and most kids, including my own, the excitement of the coming snow storm brings giggles, and smiles, the energy surrounding the feeling of going outside to watch the flakes fall and the accumulation begin.
The excitement was building the day before, as the weather forecast predicted 5-9 inches of snow beginning in the early afternoon.  Parents and teachers anxiously await early dismissal, as children try to understand coming home early for highway safety.
As a parent of a child with an intellectual disability, but also, one of the most stubborn children, waiting for school to close and the idea that we are all about to be cooped up together for days in freezing cold weather, can be stressful.  To add to the stress of that, I am the parent that manages emergency closure pickups, which can be especially daunting with a child who weighs 63 pounds and will sometime refuse to walk.  In 25 degree temperature, bundled up so tight that you can barely move arms, just adds to the struggle of getting this child to the car and buckled in without resistance.  
Sadie wasn't interested in walking,
so she was pulled by her dad on a boogie board.
As most parents of young children know, it is utterly exhausting to get every child bundled up for the cold, especially for snow play.  Hats, mittens, gloves, scarves, ski bibs, ski pants, layers and layers and layers of socks and pants, boots and boots and boots, and finally coats.  I can be completely worn out before we even open the door to feel the arctic blast.
The best part of all this frustration, the smiles and excitement of first steps in 8 inch deep snow, running and watching the dog hop through depths as tall as she is.  But most of all seeing your street blanketed in beautiful untouched snow.   The feeling of the crisp air and feeling the crunch of snow and ice underfoot, watching your children pick up snow and touch it to their tongues, throwing it in the air, running through the surprise depths of snow, makes all those frustrating moments worth it all.  Their smiles and enjoying the moment make all of it worth while.
After she kept sliding off the boogie board,
we switched to the wagon.
The most important thing for me about today is that no matter about Sadie's disability and how it can sometimes be hard, we press on and create memories as a family for the sake of our happiness and her sister's happiness, to make the most of the day, but most of all to live in the moment.   
I do have to be honest and admit that while all of that snow and walk around the neighborhood for a few hours was wonderful, I am perfectly content in the warm house drinking hot Irish tea with Sadie and knowing that our other daughter is playing at the neighbors house with her friends.

Sunday, January 12, 2014


After participating in my state's Partners in Policymaking program 2010-2011, I learned that another PIP graduate brought SibShops to my area for her end of the year project.
"Sibshops are best described as opportunities for brothers and sisters of children with special health and developmental needs to obtain peer support and education within a recreational context. They reflect an agency's commitment to the well-being of the family member most likely to have the longest-lasting relationship with the person with special needs."
At that time in 2011, Sadie was nearly 6 and her younger sister was nearly 3; therefore, she would have to wait at least three years to attend a meeting.

Shelbi was able to attend her first meeting this past November.  Happily, she instantly connected with the people running the meeting and also the other children in her group.  She enjoyed the meeting so much that she was excited to attend the next one.  However, due to scheduling, she couldn't attend the next meeting until yesterday.

At the meeting yesterday, she was so excited to be there, so much so that she actually didn't want me to stay with her for the meeting.

When I arrived back two hours later to pick her up, she was modeling playdoh and chatting with another sibling. This also gave me the opportunity to drive around and explore the area, stop at a few shops and grab a coffee.  We both benefited from the morning.

I'm so thankful for programs in our area to support the lives and health of siblings of people with developmental/intellectual disabilities. 
Virtual Waterway on the floor with puddling water sounds too