Tuesday, June 2, 2009

In My World

Welcome to "my world".

Until recently I hadn't realized how much I have retreated to "my world",and how much I have come to resent the 'outside world'

A blogger friend of mine, Ellen from To The Max recently posted about the same thing.
She gets it. Other parents of children with special needs get it.
People who don't have special needs children do not understand. They just can't relate.
Sometimes, its even the people who are close that sometimes just can't relate.

My safe world equates to our house, therapy, and his preschool classroom. These places, I don't mind being at. Take us out of these areas and I am uncomfortable. I am ready for a fight. Sometimes I'm just looking for someone to stare, instead of going about my own business and enjoying my child and our time.

At home, there is no one there to judge Daniel because he can't sit up on his own, or he has a special seat to sit in. Or he screams in excitement, or talks in his jabber-walkie talk that we understand 99% of.

At home, only people who understand us are here. Not people who will look at him weird or ask "what is he doing?". And if there are people here like that...I am uncomfortable and I want to flee to an area that they aren't.

I don't like answering the questions, or getting the looks of pity, or the questioning looks, trying to figure out what is going on. Just go with the flow..
he's not going to bite you, there is nothing to feel uncomfortable about. He is a little boy, with an amazing smile.

Sometimes I don't mind being the recluse. Then there are other times when I get pissed off because I feel we cant experience the things that everyone else gets to. Why can't we go about our lives without the ogling eyes of the outsiders?
Why is it that because a person can't walk, that people just love to stare?
Or because a person isn't talking?



baby trevor's mommy said...

Wow...me too! Although when Trevy has a public cluster if it's noticed I'm pissed...if it's not I'm pissed... Maybe I have anger management issues?


blogzilly said...

This VERY eerily echoes some of the thoughts I'd been having lately related to even a family outing we went to on Memorial Day.

There are places I am comfortable with Bennett and places I am not. And right now my world doesn't even expand outside of the house and his grandparents house. Beyond that we haven't really ventured much and when we have, the Seizure Bunny takes a giant crap on the festivities.

MeghatronsMom said...

GIRL, I feel ya! You know how I feel about the stares too! Argh! We need to all move to an island where everyone gets all the therapy & equipment they need, nothing but the best therapists & everyone understands. {{{HUGS}}}

wherever HE leads we'll go said...

My daughter is still young so we don't venture to too many places. She is still in a stroller and looks like a typical kid for the most part (at first glance anyway). But I know the days are coming when strangers will stare and maybe even ask the dreaded questions. I am NOT looking forward to those days!

Amy said...

Oh gosh, I just had to post on this one, because you took the words right outta my mouth!!!! Hi, I am Emma's mother. I have checked out Daniel's blog from time to time since you shared it at the ABR support group. We just started ABR with Emma who is 5 with spastic quad CP. (I agre with you that it is time consuming and expensive. I hope it works for us.) So, let me tell you how I feel your agony! I feel the same way!! You know, even before Emma and CP and this life, I never would have stared at kids in wheelchairs!! Never!!! OR asked weird questions. ESPECIALLY!! BUT, the ridiculous pity look(s)is/are what I hate the most!! These kids are amazing. They have 10x the spirit of the rest of us and work so much harder than "neurotypical" kids!! I hate those crazy words too... NORMAL, TYPICAL, NEUROTYPICAL... what the hey!! Chin up!! Feeling the pain here too!! Surely this makes us stronger in some way!!!

Bird said...

I know how you feel. I HATE it when people try to talk to Charlie--I mean, just leave us alone. They don't know he's special needs and I dont' want to get into it. Why do peole feel that they can talk to any child they lay eyes on?

Rich said...

You talk from a disabled point of view, but the face it it's not just disabilities... If a person happened to be black, and walked in a white neighbor hood, or the kid with the $150 sneakers standing next to the kid with the $20 sneakers. - Every one gets judged some how.

Though I am disabled myself with bad eyesight, if I seen a boy with CP I'd probably stare, or maybe try to help when they didn't want it or need it... Just the same if you seen me on the corner with my white cane ready to cross... Some times I'm glad I can't see people staring at me, but I still can feel the looks.

Jacolyn said...

Oh boy...me too!!! Or I want to explain all the wonderful things about Grace that people can't see. I want so badly for them to understand my world...but they can't.

JoAnn said...

But remember Melanie...Daniel is a beautiful child! I think I'd be staring at him just because he's so stinking cute! :)

I do know what you mean though...when I see people staring at Emma's arms and whispering to each other I just want to say something rude! I have to bite my tongue frequently.