Ducky Diaries: Answers edition: Why do my friends with disabled children never leave the house?

Sunday, November 9, 2014

Answers edition: Why do my friends with disabled children never leave the house?

What a perfect title for today's blog, especially since I haven't written a single thing in over a month! 

Reclusive friends, relatives, who have children with disabilities. "Why do they never leave the house and or come to things I invite them to?" 

I know at times it can feel like an attack or an all out un-caring attitude, or that we just don't want to be around you. However, I can mostly assure you that this is not the case (I can't speak for everyone).....

There is a decision making process that comes along with every trip we plan and every outing we attend, and I'd like to break it down for you, in hopes that you, my friends know we really do love you.  And like the post date text, "It's not you, It's us.", it's really true.

So without further ado, here we go:

-"Is the amount of physical work I have to do to make this trip possible worth the amount of physical work I have to do to make this trip possible?" 

Basically the equation goes like this, ab x's yz squared / 13 = NO!

The mass of things you have to drag along for children is astounding when en route to an outing. Throw in wheel chairs, walkers, gait trainers, braces, adaptive equipment and or gear, adaptive eating utensils, tube feedings, oxygen tanks,  and any number of things needed to accommodate a special needs darling and well, it's just sometimes a whole lot easier to stay home.  That's just the truth.  Plain and simple.

-"Is this outing not only welcoming of special needs children, but accommodating? Will there be activities for my child?"

Basically speaking, is my kid going to be stuck in his wheel chair the entire time, staring as all the other children are running, dancing, climbing, jumping and or playing games that involve and require full body movement. 

-Will there be other special needs children and how many children in general are going to be present?"

This. This question has a more complicated answer.... 

Will there be other children, like my child? Someone he has the potential to relate to and bond with. Often times there aren't and we are brought to the next question.  How many other children are expected to be there, that we don't know. 

Because unfortunately , every child that doesn't know my child will have at least three moments of pointing, whispering, or just flat out asking me as many questions as they can, rather than asking my son.  Which yes, I understand, children are inquisitive. It is natural.  And it's embarrassing for you as the other mother, because, how do you answer?

Here's what you don't understand. My son is fully aware of your precious buttercup and the scene they are causing. He is fully aware of everything that is being said and asked about him. And quite frankly I can only explain, to your child that sometimes things happen and babies are born with boo boos in their head and that it hurts their legs, so many times. 

Roughly around the fourth time your precious buttercup circles around us like a hungry shark pointing and asking their millionth question while you chat up another mom, and when all I want to do is exert the physical energy needed to help my child play, I get dangerously close to yanking precious buttercup by the arm and furiously telling them to get lost. 

Sorry, that's just the truth.  It's not my place to teach your child. The first and second question are always welcome, anything after that my child starts getting upset as, do I.  Again, I'm sure it's not comfortable for you as the other mom, but it's not comfortable for me either.

And lastly, for us,

-"Will there be things, sounds, sights, feels, that will send my child into overdrive and result in a meltdown? If so is there a place I can take my child to calm them down?

Again this really falls into the accommodation zone. What accommodations are made for children like mine? Is this trip worth the possible physical anguish my child will endure if they accidentally touch play-doh?

And there you have it. Some of the many reasons why parents of special needs children opt more times than not to stay home. Home is where we have some semblance of control. Where the environment has been carefully tuned for our children. Where we don't have to answer questions or stare into the eyes of our sad confused child when other's won't or refuse to play with them. 

No one alienates our children in their own home. Home is safe. That's why we stay. 


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