Came back from Nashville this weekend after graduating from Tennessee Partners in Policymaking!
If you are a parent, sibling, or person with a disability, I encourage you to apply for this program by emailing Ned Solomon @ ned.solomon@state.tn.us
This was a 7 month commitment of time traveling to Nashville 2 days per month learning about housing, policies, rights, changes, employment, inclusion, etc regarding persons with disabilities.
Corporately,
Today, I am working on sponsor letters, grants research, and the Tennessee Titan's presentation. Also working on parent training plans for informational meeting during one of our evening oases.
Personally,
Today, I am trying to juggle laundry for 6 people, car pool, and picking up fundraiser stuff for our soccer team. I also have homework for a Tuesday night class that I must finish today.
Hmmm, I wonder what's for dinner tonight and who's cooking it?? I just noticed some petrified poop on one of our ceilings. I wonder how long THAT'S been there?!?
signing out for now
C
Monday, April 28, 2008
Saturday, April 19, 2008
House of Poocaso
Thanks to a friend of mine, I began this blog as a means to able to be real with other moms out there who struggle with the same issues as me and to also reveal the drama behind running a non profit ministry.
Today was different than most days, Ryan only smeared poo once! Dealing with the pica is the most difficult challenge with him. I can handle his Cerebral Palsy, Autism, Mental Retardation, him being non verbal, seizures, etc...but pica tests my patience BIG time!! Especially in the middle of the night when shit happens!
This afternoon, we visited Ryan's Place universal playground located at WC Johnson Park in Collierville Tennessee. I interviewed a Dad about what we could add to our next playground that we did. He was a great resource for answers. Because I am a member of our Parks Advisory Board, he made other suggestions to me to take back to the Parks and Rec team.
Yesterday was an interesting day. We won the Innovator Award for helping special needs children from the United Way of the Mid South! Then at the Board meeting our Board President and I discovered how little our Board members value the services our organization does to help people. Many services that we provide are intangible but they are real. Advocacy, research, parent training, raising awareness, researching resources and legislation are all a means to an end "community inclusion" However, they aren't comfortable with that. They want stuff they can see and touch. They want concrete. Universal playgrounds and horseback riding are tangible and they are comfortable raising funds for something people can see. (what about St. Jude?) So yesterday, basically I was told that my helping families doesn't count unless it's something that is concrete. We also discovered how little they understand about non profit policies and fundraising. Our newer Board members get what it is that we're about. We need some fresh blood.
So I left angry. But by the time I got to the Evening Oasis which is a respite program where we care for special ones and their siblings so parents can have a break, I talked with volunteers and parents. I felt better and reassured. I guess there will always be people who do not understand and who are not visionaries and will never understand.
This morning I spoke with our Board President today and 2 other Board members about yesterday. They admitted that some of the comments made yesterday were tacky and tasteless. They apologized to me, but they too, saw that some of our Board members don't see value in some of the services we provide not understanding that they are the most valuable. My question is if we can't get the Board to understand why community inclusion is important to our families, then how do we expect the general community to understand how important it is?
With me living Ryan's Hope 24.7 it's a struggle some days to roll out of bed at 5:30 in the am and then fall into bed around 11:00pm after finishing up unfinished business from the week. I love helping people, it's my passion to see that each person I come in contact with lives up to their full potential and their life's purpose. It's something God instilled in me. When I realized that the same spirit that raised Christ from the dead lives within me, I knew I had to help others and that I could help others through the grace of God.
My book Raising Ryan can be found on the web www.bbotw.com or on amazon or at any bookstore. Get it. It's inspiring, funny, sad, and makes you appreciate life.
Signing out for now,
Mother-of-5
Today was different than most days, Ryan only smeared poo once! Dealing with the pica is the most difficult challenge with him. I can handle his Cerebral Palsy, Autism, Mental Retardation, him being non verbal, seizures, etc...but pica tests my patience BIG time!! Especially in the middle of the night when shit happens!
This afternoon, we visited Ryan's Place universal playground located at WC Johnson Park in Collierville Tennessee. I interviewed a Dad about what we could add to our next playground that we did. He was a great resource for answers. Because I am a member of our Parks Advisory Board, he made other suggestions to me to take back to the Parks and Rec team.
Yesterday was an interesting day. We won the Innovator Award for helping special needs children from the United Way of the Mid South! Then at the Board meeting our Board President and I discovered how little our Board members value the services our organization does to help people. Many services that we provide are intangible but they are real. Advocacy, research, parent training, raising awareness, researching resources and legislation are all a means to an end "community inclusion" However, they aren't comfortable with that. They want stuff they can see and touch. They want concrete. Universal playgrounds and horseback riding are tangible and they are comfortable raising funds for something people can see. (what about St. Jude?) So yesterday, basically I was told that my helping families doesn't count unless it's something that is concrete. We also discovered how little they understand about non profit policies and fundraising. Our newer Board members get what it is that we're about. We need some fresh blood.
So I left angry. But by the time I got to the Evening Oasis which is a respite program where we care for special ones and their siblings so parents can have a break, I talked with volunteers and parents. I felt better and reassured. I guess there will always be people who do not understand and who are not visionaries and will never understand.
This morning I spoke with our Board President today and 2 other Board members about yesterday. They admitted that some of the comments made yesterday were tacky and tasteless. They apologized to me, but they too, saw that some of our Board members don't see value in some of the services we provide not understanding that they are the most valuable. My question is if we can't get the Board to understand why community inclusion is important to our families, then how do we expect the general community to understand how important it is?
With me living Ryan's Hope 24.7 it's a struggle some days to roll out of bed at 5:30 in the am and then fall into bed around 11:00pm after finishing up unfinished business from the week. I love helping people, it's my passion to see that each person I come in contact with lives up to their full potential and their life's purpose. It's something God instilled in me. When I realized that the same spirit that raised Christ from the dead lives within me, I knew I had to help others and that I could help others through the grace of God.
My book Raising Ryan can be found on the web www.bbotw.com or on amazon or at any bookstore. Get it. It's inspiring, funny, sad, and makes you appreciate life.
Signing out for now,
Mother-of-5
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