Picking up bricks

I'm at I have been privileged to spend three days in Austin surrounded by brilliant minds representing many content areas.  Having conversations with and listening to speakers who offer vast amounts of knowledge has been inspiring and always humbling.   In attendance at the National Conference I encountered people with many varying degrees of physical abilities.  I can see in other people that there is always a way. People of all degrees of ability are able to be accommodated and their gifts are able to be shared.  I want the same chances for my kids, pretty much a universal Mom thing, but we were never supposed to be in this position. Who really is?

This is the state capital building and this feels like our life.   The building is accessible, but the ramp is way off to the side and many more steps in hot, humid Austin.   Parking Libby there and realizing that we are spending everyday going over, around, under, and sometimes bulldozing our way through the systems. It's like my habit of picking up rocks from anywhere or bricks during our travels, I have to carry more.  More over, around, under and sometimes through brick walls.  Yea, I have a brick from 6th Street.

There are some amazing people who work to serve people with different abilities; Libby just generally doesn't fit into any of their service plans.   Here's what I've heard in the last six months: "she doesn't qualify", "she would have qualified if you applied before 18",  "why haven't you tried....", "call this number and start a case or make an appointment",  "but aren't you on...", and my favorite "what do you really think she'll be able to do..."!  More bricks.

Today we had our meeting with DARS to discuss Libby's test results for their vocational program.  These results will help us get her SSDI started and open other doors. I am glad we went through the testing, although now I have on paper what I don't want to know.   I don't want to know how much Liberty we have lost, how much of her cognitive and motor skills are gone, or her IQ.  I don't want to know and yet I have to in order to move forward.  

The caseworkers were very careful about how they gave us the needed information from Libby's tests.  I am most grateful. 

Libby was found to be unemployable/, not ready for any vocational training. A new label on new paperwork. Even though this is what we thought might be their verdict, it was still hard to hear.  My heart hurts and I think that's okay.   I am a realist and I am on the front lines for this kid; I know her limitations.  

I wish there was a way for Liberty to return to her pre-Lyme self.  Since that won't happen, we will keep moving 

one 

brick 

at a time. 

We went to the store on the way home and I had to cry through a few aisles. All the school supplies and so many little kids.  All I could see was the Libby from before. Before. Rachael took Libby and I maneuvered my sad way around.  (We were out of just about everything!) At the checkout the sweet lady in line behind me asked if Libby had CP.  I told her that she has Lyme which has wrecked her Neuro systems.  Her daughter had CP. She asked how old she is and after I said 18, she told me that they lost her daughter at 16.    My reality just got checked.   We had a beautiful conversation and I wanted to keep talking.   I thanked her and she just smiled.  She said to "just keep going".  Yes ma'am.  This has been hard, but we are still going. 

Libby is not a test score.  She is not a label.  No person is.  We will take these new labels and scores and use them to open a few doors.  Libby is beautiful and creative and truly gifted at wooing people. 

We don't know where this path of stolen bricks will lead is. I just know we will keep

going.  Monday we meet with the local college about the accommodations Liberty will need. I pray that this will be a positive step.  

Heartfelt thanks to our DARS people for trying to help and for being gentle on This Mommy.