Tuesday, April 9, 2013

Live Abilities with #FASD —Changing the meaning of success

From one of my readers -

Then tell me, how do we get funding for our kids who will need it. It’s all nice and sweet to wish for this, but you of all people should know better. 

Our kids need life long support. That is a disability. What we should be concentrating on is having the diagnosis be a death sentence. Change the meaning of what success looks like.


My Response:

Yep, that is exactly what we are doing... changing the meaning of success... finding abilities to build companies that these adults can work in...
            and you are right there IS no money
- this idea began because I went after an 18 month grant to build job opportunities for persons with FASD and I pulled six (semi functional adults in with me as information support) --- we did not get the grant, but I could not let them or the project down as we had been working on this in the building of the concept and they trusted me...

            and I listened to them.

They begged me to NOT stop and abandon them as everyone else had - they have all experiences in supported living - losing jobs - chemical issues and they are now sober and faith based adults 26-36 years old. So I said ok I will keep going and I developed and designed the website with them as my art directors and guides.... the site took me four months of my free labor for all the programming so it could work with their smart phones and Ipads if they have them.

So what is success—
it is feeling like your life has a
purpose and you matter.

One tried for college entrance - her scores needed to be 35-35-35 - she studied she did her best and she got 34-34-46 - her dream still exists but how can it be achieved - she is probably capable to work 3 hours a day, maybe 4 as long as the environment is manageable... and that is not college — so we moved on to another do-ABLE opportunity that everyone can participate in.... from the next idea we hope to build something for others to participate. We have to start somewhere...

Another two got jobs over the holidays—that lasted through the holidays and the fall out from having those jobs is incredible and something most people never ever think about until you are behind the scenes

Another moved from assisted living to independent living with his fiancé and is working.... yes a glorious job of dancing as the Liberty Lady and the Little Caesar Sign persons --- he does both jobs extremely well -- and handles the community hecklers quite well too... Purposeful? yes he is given extra money to get a few things like save for a small freezer so he can buy food cheaper.

Another has spent almost a year untangling from the justice system for an offense he did not do, walking the walk with cognitive translators to make a difference—what he also has accomplished without a job this year is— was Santa, spoke to the governor about his 100% preventable disability, explained Live Abilities to a Senator and what the difference in thinking is when you have hope, is mentoring a young man struggling with chemical use, gave his testimony to the mission for homeless... yes his life is now purposeful and not punitive!

And all those are successes....
Is there money - no - no money.
I am working two jobs at $10.00 an hour to help make a difference - and using every minute I have that I am not working for others to help make a difference for the adults with FASD - is it easy - no this is the hardest most difficult job I have ever tried to accomplish.

The diagnosis is not a death sentence—in state commitment under the care of professionals my daughter almost died - on her own in the streets she needed to be defibrillated two times.... yes it can be a death sentence - without the right supports—but you and I are going to die too and we will die sooner than later if we don't take care of ourselves... if we don't figure this out... Warehousing our kids in prisons or hospitals or on the streets is not a solution...

First we have to figure out what success is for them.... and that can't come from our minds and hearts it must come from their hearts and brains. All three adult couples I am working with are living with supports -- and with the right natural supports they are functioning as purposeful adults.

It is not easy. It is not pretty. But they mostly like their lives...

Please consider joining us on this journey. I am interested in your viewpoints.


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