More resourses

[Linda Collins]

Is there anyway to have resourses satelite to rural areas for educational purposes of families who cannot get to the bigger centers? Has anyone thought of us? We are educated, but we live sometimes 5 or 6 hours from the centers who offer the classes. Between gas prices, room prices, and child care the average parent cannot attend those classes. I for one would love to know more about the Asperger's that has my twins life in it's control. I read everything I can find, but networking with people one on one gives a whole different outlook on things. I cannot afford to pay the expenses of travel, room, fees for the class, and etc. to go to a class. Does that mean my children are not as worthy as the other children of the parents who can afford to go? I don't think so. I just need help. It would just take connecting with a doctor in the area and setting up a satelite meeting place. Has no one thought of that but me? If anyone has the ear of powers that be please pass this on. Thanks. Linda

[Sharyne]

We should talk to KET about doing something like that. They do education classes for GED, why not for parents of autistic children? Would an official representative of the center or person doing the class have to set it up or could one of us do it? I agree that we should work to provide access to this information remotely. Perhaps we could upload a recording of the classes to this site for people like Linda to see. Something to try.

[Linda Collins]

This sounds like a good idea. I wouldn't know to go about that. If anyone does I would appreciate a heads up on how to do it. I would look into it. This would be good if we could access it at our own timing---without children to interrupt us.
As to it being on a at certain times only when the children are about and demanding of our time. I must admit that the concentration level for me really drops when the guys are home. That was why attending a conference is so appealing--kids are somewhere else and you can listen to what is being said. Thanks.

[norma.thomas]

Actually, your question couldn't have been asked at a better time. Did you hear the latest announcement made on August 25th, 2008 by Lisa Y. Gross [Office [phone]]. Kentucky has been selected by the National Professional Development Center on Autism Spectrum Disorders to be one of only three states to receive technical assistance related to autism, which affects more than 2,300 school-aged children statewide. The purposes of the two-year project, which will begin in Kentucky in January 2009, are to:

* increase the number of highly qualified personnel (particularly teachers and practitioners) serving children and youth with ASD in Kentucky
* establish a sustainable system of professional development in evidence-based practices in ASD
* provide technical assistance support for early childhood practitioners, educational leaders, teachers and school-based personnel.

Among the proposed initiatives is to create online training on evidence-based practices, which could address the need that you have presented. Are there other ways that you believe that the state of KY could help you or someone you know with ASD? If so, please let's brainstorm and come up with other ideas of how KY can help us help our children so that, when this state-wide initiative gets off the ground in January 2009, it can effectively address our needs using our input.

[Donna Reid]

Where bouts was this gonna be taking place? For me and my family living in southeast Ky, we dont even have Respite care, much less anything else of need here for our kids. What services my son gets is at school and what I do with him here at home.

Some of Marcus' teachers went to some of the autism classes that were offered up there in Louisville and what was told to them much of it was outdated and missleading. One of his teachers was in my autism support group on msn and came in there everyday reading the biomedical news I had posted up, all the therapy info and the alternative therapy info and such that she could use in class.. and when she went to one of the workshops and classes up in Louisville everything that was told to her sounded outdated compared to the recent articles that I was posting up in my group.

I can tell ya honestly.. while the idea of conferences are great, but the best experts that you can talk to really is other parents.. not all doctors are educated in Autism nor with autism behaviors. My personal feelings on these so called experts in the field of autism, who by the way most dont even have children with autism themselves, are nothing compared to those of us who are autistic or have children with autism.

Dr. Temple Grandin is one I personally would love to talk to. She is an aspie herself and the insight she can give us parents are invaluable. She is a motivational speaker and she writes papers on autism from a point of view that is much different than from a doctor who writes on from reading up on what is already written and from what is currently in process of study. This is just my personal opinions.
Donna

[norma.thomas]

Well, Kentucky was awarded a grant as one of only three states to receive technical assistance related to autism to increase the number of highly qualified personnel serving children and youth with ASD in Kentucky, establish a sustainable system of professional development in evidence-based practices in ASD, and provide technical assistance support for early childhood practitioners, educational leaders, teachers and school-based personnel. The project has not started yet, as it requires much upfront work before rollout. This project, as it is being defined now, will begin with a model center in Louisville and, thereafter, lessons learned and training are to be shared and conducted gradually throughout the state of KY. This project is different from the conferences that are periodically held in the state.

With respect to the conferences, I would have to disagree that the experts are solely parents or solely doctors or other professionals, as each is an "expert" in one piece of the puzzle. It is the sharing of ideas and experimentation that generates new knowledge, and so conference, expos, and communities of practice are important to enable this to occur. In conferences, one will always find that some speakers are stronger than others, and some have great ideas but their presentation skills aren’t as sharp. However, they all generally have something to contribute. For example, I have attended conferences in which the plenary sessions cover recent brain research findings, which might not have direct applicability to my work with my child as it doesn't provide me with concrete "how-to" techniques and strategies. On the other hand, the work that some of the researchers are conducting can and does influence the work of other professionals who might see the applicability of brain research to their work on: how they advise parents, how they engage with autistic children in their sessions, and how they participate in the political process to change public policy. One problem is that a few in our communities get the opportunity to attend, not every stakeholder that should, does. Furthermore, just having a select few people attend a conference without follow-up [e.g., additional supports and conversations] will not lead to changes.

Exposure to knowledge is a great thing but exposure alone doesn’t effect substantive, lasting changes in the lives of autistic individuals. Nevertheless, it is through conversations between stakeholders in various fields [i.e., parents, professionals, government officials, etc.] that we can have the greatest hope in enabling our children to lead fulfilling, productive lives.

[Linda Collins]

Since I started this discussion, I have started an Autism support group in Letcher County. We are working real hard to learn from each other. But we are starved for ideas suggestions from others with knowledge. I would love to have someone like Jerry and Mary Newport or John Edler Robison come to the area and talk to us about how they have come through life and made it. I think a long talk with them would help me a lot, or at least let my twins have a long talk with them. I also want to learn want anyone has tried and found that it worked.
My guys are older now, I am now facing the adolescent stages and not looking forward to it! I now face a whole new set of challenges. When the guys were little I would have grabbed any straw or life jacket any "supposed" expert threw out.. I know how some of you feel, been there. I read every book I could find because we didn't have classes in our area. I have touched base with Ky Autism Training Center and they are coming to my group for a class. So you can bring the class to you. It took me starting a group to do that, but it so needed here I went ahead and did it.