Friday, October 3, 2014

Your Questions: How We Handle Accessibility Issues

 I've had some great questions about Spina Bifida as it impacts our family!

Q: How does he (and you) deal with inaccessible places?

A:  This has a range.  Some places are not accessible to get into.  For example our local nature center is in the basement level of a building.  There are no elevators.  It is two flights of stairs to get down there.  It ends up being one of the easier accessibility problems.  We went on Monday as a family.  Daddy carried the wheelchair down the stairs while Mommy carried Mason down the stairs.  Then he went into the wheelchair to explore the rooms, and eventually onto the floor too, playing with some of the toys. 

Other places are not accessible for a wheelchair throughout most of the area.  We have an upcoming trip to the pumpkin patch/farm.  They have an enormous play area outside spanning the fields and barns. First obstacle?  Huge hill down (with steps cut into the hill).  Second obstacle - maneuvering a wheelchair on grass/ uneven ground/smaller hills.  Third obstacle - corn maze (they simply roller over the corn plants when forming the maze, so the ground is nearly impossible for even an adult to push Mason's wheelchair through.)  Fourth obstacle - Mason can't climb onto ANY of the play equipment, unless they've changed some things. 

How will we handle it?  Some areas we'll carry Mason, lift him up out of the wheelchair onto play equipment, etc.  Other areas we'll help push him (ex: in the grass) when he wants us to.  The corn maze?  I'll be wearing him in the Ergo carrier.  Some activities he'll need held high enough to participate, like rubber ducky races in troughs.

 It's a very physically demanding day when we visit inaccessible places.  Going on the trails at the arboretum is like this.  We can sometimes push the wheelchair over trails, while other times we're deep in the woods going over roots and up hills so someone carries Mason.  We take things as the come and try to stay flexible. 

Mason is not yet 3 years old.  There will be many more encounters like this to navigate as he grows up.  I have already started noticing them.  For example:
  •  When I went to Cub Scout Day Camp one day this summer with Joseph I saw the many places I'll need to be able to lift and carry Mason to get him into or out of the area for an activity when he's 8-11 years old.
  • Going to visit someone's house and realizing their doors are accessed only by stairs so we need to carry Mason in the house AND carry his wheelchair. 
  • Then once we are inside I realize the house doesn't have wide enough spaces for him to use his wheelchair, or is a split level with steps up and down in many places inside.  He'll have to crawl, which at age 2 isn't so unusual, but when he's and 8, 12, or 16 year old crawling around it will be unusual. 
  • Watching young men pass the sacrament trays and wondering how Mason will do that and wheel around at the same time.  (I'm sure he will figure it out, it's just another thing).  Of course, our young men are sitting up on the stand for the beginning of the meeting, which is up several steps and has no ramp, so Mason can't get up or down anyway. 
  • When the youth group plans an activity away from the church (my oldest attends now, you have to be at least 12) and not only is the place their going semi-inaccessible (outdoors at a farm) but the leaders don't have room for a wheelchair in their vehicles, aren't used to lifting a teen in and out of a vehicle or wheelchair, and the activities are things like mechanical bull riding which Mason wouldn't be able to do because he can't climb onto OR grip the bull with his legs.  Falling off would be certain and he would be likely to break a bone or two in his legs because he couldn't control his limbs in the fall.  (I could list a lot more youth activities I've cringed at already, thinking about the accessibility...sigh.)
Accessibility is just one of the things you deal with when a wheelchair is part of the equation.  Like most things, we'll figure it out as we go along.  Our goal is to not let accessibility determine what places Mason can go.  If we need to do some lifting and carrying we will.  If Mason wants to participate and wheelchairs are not an option and that means he needs to crawl in the dirt we'll grab the knee pads and ignore the ruined clothing.  It's going to be an interesting adventure!

I'll be sharing answers to YOUR Spina Bifida questions all month long so if you have any be sure to leave them in a comment!

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