What are your advocacy needs? - Mothering Forums

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#1 of 3 Old 07-06-2012, 10:09 AM - Thread Starter
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Hi! (sorry this is long!!)


I am a mom of a typically developing child but am engaged to a man who has Aspergers Syndrome. He was only diagnosed about a year ago in his early/mid twenties and is very high functioning. We have spent the past two years obtaining our Masters degrees. My degree is in Child and Family Studies (undergrad was early childhood and elementary education) and his is in Plant Sciences. 


Ever since he was diagnosed he has been especially interested in Autism/Aspergers and has decided to change his career goal from obtaining a PhD in Plant Sciences to studying Autism in the field of psychology or neurology. We were living in Knoxville Tennessee and we reached out to people in the Special Education field and were invited to speak at two Special Education Conferences and one Transition Fair over the past 6 months. At the two conferences we spoke about his experiences and the need for more empathy training for our youth. Basically he began by talking about his experiences and the experiences of other people we found in media stories who were victims of bullying and discrimination due to their 'different behavior', or lower cognitive functioning.. basically just being 'different' in some way. We talk about how many people state that those with Autism lack empathy and point out how it is, just as with the typical population, really a case by case basis. We also point out that empathy can be 'trained' or that these skills can be strengthened like muscles. We ask our audience if, because of all these instances with bullying and discrimination, whether it is people on the spectrum who have the empathy problem or ALL OF US? We propose that all of our youth need more empathy skills training, including that which is focused on understanding various disorders so that we can understand the behaviors/REASONS why different people do different things to combat bullying (for example, if we teach general ed. students about sensory overload issues they may be able to empathize with child who is struggling with these issues better rather than ostracize them).


The transition fair we went to, we just sat on a panel and answered questions about his experiences. Basically, it has been a lot of self advocacy and it has helped his self-esteem and confidence, as well as helping to teach others. Parents and professionals alike seemed very touched by his experiences and messages and some, teary eyed, reach out to us for advice and guidance or just to say thank you and that more people need to hear such things. He came across a grant application for people with special needs to do a project for advocacy with special needs. He proposed an idea to get funding to set up a panel of young people with special needs to discuss their experiences in a public setting (schools, potential employers) in an effort to self-advocate because it has helped him so dramatically.


He did not receive this grant but he mentioned his idea at the transition fair and a man who is the Director of Partners in Policymaking for the Tennessee Council on Developmental Disabilities who was helping to run it told him he could likely get funding for his project through the council. This was very exciting because my fiancé decide he wanted to start a non-profit organization with the intent to help others self-advocate and perhaps set up some form of scholarship for the young people who participate in the program. With my degree and background it seemed lie a great way to use my knowledge and experience as well and we would love to work together on something. Unfortunately we planned on moving to Pennsylvania to be closer to family after we graduated (which I did in May and he is defending his Master's Thesis as I write this so hopefully will be finished today!!) so we could not take the Tennessee funding if we are in PA.


We don't have much in the way of connections in PA but would still like to try to form this organization or project. We are in the process of registering the organization and learning about how to build a board of advisors and looking into who we might ask. THere is a decent chance we may even be able to self-fund for a while if we get good news about another project he is working on.


In order to do this we need to have a very solid and clear organization "business" plan which is where I need your help!!!!We love the idea of a panel/scholarship but weren't sure how hard this would be in reality. We would obviously need relatively high functioning and willing youth/parents who could speak on a panel to self-advocate. My fiancé would like the youth with special needs themselves to be the only ones on the panel and give them a chance to speak for themselves as he thinks this is very important. I see his perspective and I would like to have those youth as well but also give parents/siblings/ anyone who feels they have something to share a chance to speak on these panels because I think it would represent more of the special need population as some just won't be able to speak on a panel. However, the youth with special needs who speak, say 5 times, are our advocates who would get  scholarship. Others might be classified as volunteers. These are  type of questions we run into-- what is the more appropriate way and effective way to set up our program plan. 


Also, we feel strongly that self-advocacy can help the advocate and the audience in many ways so that is our main purpose (basically to help build a community with greater empathy from and for all people)..but do you see any issues we are missing? Would parents be interested in something like this for their (likely older/high functioning) children? Is it exploitative? How do we include those not able to speak on a panel? Do you have any creative suggestions for how we would run the program? Do you think there is something more important that should be focused on/ a better way to meet our goals? Do you know of other programs that already meet this need or do you feel this is a worthwhile goal to work in this issue area? 



Thank you for any and all feedback or constructive criticism!! I would like parents perspective before I move forward with more formalizing of a project plan and reach out to board members. Also, we are located near Valley Forge/King of Prussia (suburb of Philly) in PA if anyone is nearby and wants to help!!!


Thanks again,








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#2 of 3 Old 07-06-2012, 04:14 PM
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 I have to say that this sounds very interesting!  My ds1 is on the spectrum, and pretty high functioning, but since his issues center on social skills, it would be very difficult for him to speak for himself.  That being said, he is a pretty good at writing and expressing himself that way.  So maybe including different ways for people to express themselves would be interesting. 

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#3 of 3 Old 07-31-2012, 11:34 PM
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I suggest that your husband google COPAA and possibly join their organization for advocates. There is a lot of information on their listserv for advocates.

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