Daily Archives: 07/07/2017

We show up when needed always astonished we need to fight for what is being fought for…..


Welcome to Ds soapbox. It’s not abstract- it’s personal.  

We’ve been actively advocating for disability “rights” for 16 years. 

Ds nonverbal but do not mistake he is passive and attends whatever his “bleeding heart liberal” momma drags him to.  (Just for the record, I’m not actually a bleeding heart liberal but more a “conservative moderate” except for where it applies to d, his voice, and what most equate for fighting for his rights.).   He attends because he’s fighting, if this were just my cause, we would be swimming and drawing rainbows. 

Personally, I’ve never understood why we (and he) need to fight for the same basic rights  to choose where he lives as the rest of us take for granted and sometimes, because of our basic rights, to behave like a complete ass and piss away opportunity.  

Not long ago our d would have been destined to an institution.   Or “a home”

You know what?  Now, until the “caps that will allow states more freedom to choose for their budgets” go into place- Right now  d can choose where he lives and what he does.  Everything we as typical folks take for granted for d involves suppports either by us or folks he hires as no one over the age of 6  wants their momma involved in their independence.  

I will never convince those on the opposite of the political spectrum as we appear to be. But for a moment, pop yourself into Ds shoes and think  how flipping frustrating it would be to be reliant on anyone to go where you want to go when you want to go there……

D is about to be an adult. 

My job now is to allow you hear his voice expressing  his choice even if I’m the voice you hear….I’ve spent his life letting go to set up supports for his independent life even while expressing my hesitation for using the ginormous swing in glenwoood because I’m afraid of heights but also allowing him to tell me in his version of colorful explective off because you NEVER confuse nonverbal with non conmunitive.    

Our other kids, if you ask, I smother.  

D, I set up to soar.  And soar he will. Hopefully with the program that allows and encourages long term suppports.  

I know many of you dislike “political” in social media. It’s not “political” on marrs. It’s essential  for our d. Nothing “political” about it.