March 10, 2015

Snow Soup

When life gives you snow. . . 

Make Snow Soup!

That is not at all how the saying goes, but that is how our saying goes.

Snow days are different in life when you have a Side of Special.

How do you play in the snow when you can't move a wheelchair through it, when you don't have the strength to scoot through it, and when you can't touch the snow because doing so will make you instantly vomit from sensory overload?

You don't.

So, then, how do the siblings have the fun family snow days and hit the hills with their sleds like their friends are?

They don't.

It saddens me that it is another loss they have in this special journey.

Someone recently remarked to me that Bridger's siblings don't know a life that is any different, so therefore they aren't aware of the hardships, challenges and things they are missing out on - that only I was aware of such.  I nearly choked.  

Let me quickly dispel any myth of the sort.  

Bridger, perhaps, doesn't know all that he is missing out on because of his cognitive limitations, but his siblings know and feel every loss.  Every. Single. One.  They have eyes, they have ears, they have friends.  They see their friend's parents at their sports games and miss their own.  They see other families at restaurants that don't have to leave half way through the meal every time.  They know of the other playdates their friends are having that they aren't because their brother is always sick or that extra time is gone because their parents are cramming 15 hours of medical appointments in each week. They know that it is not normal to take 20 minutes to get in or out of the car in the pouring rain.  They hear of all of the vacations that other people take that we cannot because it is not possible with their brother.  They see parks and playgrounds as we drive by that other children are scampering about on and feel the hurt that they can't play there too.  They hear events advertised at the school and church they cannot attend because it is impossible to do so with their brother and their parents can only divide and conquer so much.  Their friends tell them about the fun times sledding they had in the recent snow and know that with their dad at work and their mom home with Bridger who can't go out in the snow, that sledding is only a dream to them.  To mention the losses to them might cause their eyes to well over instantly with tears that they are stoically holding back because they know they have no other choice.  They endure with grace - but don't ever diminish them by saying they don't feel this. I could go on and on. . . but I just promised to quickly end that myth.  So that is my quick response.

During the storm of this past week, Alan was able to stay home from work to take them sledding for the first time ever.  The expressions on their faces would be something similar to someone experiencing the ocean for the first time.  Alan didn't snap any pictures of the excursion, but he hasn't stopped talking about the looks on their faces all week.

While he was away sledding with them, I took another opportunity to try to get Bridger and the snow to be better friends.

We made our annual favorite - Snow Soup.  He uses his spoons (since he cannot touch the snow without gagging) and he transferred the snow from bucket to bucket (huge fine motor skills here!) He would laugh and feed an eager Ty his soup.  Occasionally I would push his sensory system by "accidentally" having the snow touch his cheek, then lips. . . then . . . he would retch. . . and I would promptly back away again.  We had a grand time making our snow soup for Ty to eat.

Some things never change.

This is Bridger in 2010.  

He is sitting in a homemade supportive seating device, since he could not maintain a sitting position on his own, and I am teaching him how to make Snow Soup.  Back then, just like today, the sight of snow would make him gag and the very touch of it, indeed, did make him vomit.  Snow Soup sounds like it may be a game - but it is really occupational therapy in disguise.

To overcome the sensory challenges and touch the posing threat, often times children with special needs will use an intermediate object to safely provide the interference for them.  Bridger will "touch" the snow through the protection of a long spoon.

And because making snow soup with Ty was just too much fun not to share - I can't hold back from sharing a still frame sequence of just how grand of a time those two had.

The grand success of our playtime was our last game.  My goal in our play was to get Bridger to overcome his sensory aversions and touch snow with his hands.  That takes some incredible motivation to achieve.  We found that motivation in a game of "hide and seek".  Bridger would excitedly bury one of Ty's toys deep in the bowl of snow with his bare hands and pack it down, then on command Ty would enthusiastically find it - repeated over and over. See that blur of the tail? Wagging so hard because it was just as motivating for Ty as it was for Bridger.  It was a sensory success!

It was a super souper snowy day!

My enthusiasm for the snow is now officially depleted. It was a balmy 60 degrees yesterday and I even put on flip flops for a very brief moment.

I try to convincingly tell myself that the snow is done for the season. But if not, I will have my soup pot and long handled spoons ready and try to convince the others that they don't know what they are missing . . . because they really do.