I want to apologize for not posting this sooner to those that might be interested. I've been worried about how to approach it because I'm really passionate about my project and I've been worried about sounding like an idiot. I've been worried that no one would want to help me and through small conversations with a few women at Pathways and in my other communities, I'm realizing how wrong I really am.
Anyway, I'm currently in the Self Expression and Leadership Program at Landmark Education and what we're up to is transforming ourselves inside our communities so that we're related to as bigger than our circumstances. How we do that is through community projects that we create and using one of the communities that we're personally involved in. I chose the Women's Ministry at Pathways because of how much the church means to me. I've been a part of Pathways for 3 years now and I barely know anyone. I talk about how much Pathways means to myself and my life but I haven't involved myself and I'm looking to transform my participation in all areas of my life.
My whole life, I've felt like an outsider looking in and not like because it's hard but because I've always felt like I wasn't worth it... a decision I made about myself when I was 3. Through Landmark, I know myself to be far beyond my circumstances and decisions I make about myself and others. Pathways has worked perfectly into this. Landmark brought me to God, and Pathways sustains and grows my relationship with Him and with the people around me. I do want to thank each and every one of you for providing a space that women (and people in general) can be themselves, deal with whatever they need to deal with and be accepted as part of our larger family with God.
So, about my project...
Background: I have a severely austisic brother. As a family, we don't have a lot of support as far as other families go. The people that are involved in my brother's care (doctors, teachers, therapists, psychiatrists, etc) don't communicate with each other. Everyone has a professional opinion and advice but no one is communicating with each other.
For example, I'm heavily involved in my brother's care. I took him to a doctor's appointment when my mom couldn't (she was sick) and the doctor was surprised that my brother was off the two new drugs she had prescribed him. (Within hours of him taking them in conjunction with his current and on-going meds, his aggression and agitation skyrocketed resulting in him hitting classmates and teachers and getting suspended from school. My mom and school decided it was best to take him off both.) She told me I didn't know what I was talking about and that she had conversations with my mom AND school and they told her that the drugs were working.
Fast forward to a few weeks later, my mom was able to get my brother in to see a child psychiatrist at Children's Hospital. (We're trying to get him into this intensive day program to help with his autism and behavioral issues.) The psychiatrist told my mom that we need to stop medicating him because of his behavior. It's not going to solve the problem (everything I've been saying all along).
This is what's so frustrating. My brother is 13. For 13 years of his life, we've been trying to figure out what's best for him. How to get him the best care. If it wasn't for my mom finally getting the guts to get up and do something, finding the experts and going to the Department of Education because of the lack of help my mom's getting from the schools my brother has been in, my brother wouldn't be on the path to finally getting where he needs to be.
This is where my project comes in...
I want to create a network or some sort of non-profit, something where there is a place that families can go to (either physical or online) when they don't know where else to go. Maybe a liaison of some sort to make sure that all parties are communicating and are coordinated together to ensure the proper care of the child. I don't want to just narrow it down to children with autism. I want to bring it back to a time when your family doctor was involved with the lives of their patients. Growing up, my pediatrician was a family friend. He always made sure he knew what we were up to and that things outside of our healthcare were going well. To this day, he remembers me and my sister.
I want to bring it back to "it takes a village to raise a child."
As a kick off event, or even just an event to bring professionals and families together to mingle and get to know each other, I want to create a luncheon. Either formal or informal, where families are able to get to know professionals and ask questions and professionals are able to get to know the communities and families that they care for.
I know this is long, but this was the best way I could think about getting this out there. I appreciate you reading this if you've made it this far. If you have any questions or want to get involved, please let me know. I would LOVE your help in getting this thing together because I don't know how I'll be able to do this one my own.
Who I am is the possibility of love, communication, acceptance and empowerment.