AUCD | Project

Project Description:

The Purposeful Life: Family training series is a new community outreach project focused on increasing the capacity of self-advocates and family members to live a purposeful life. In collaboration with the Center on Disability and Development (CDD) at Texas A&M University, Down Syndrome Association of Brazos Valley (DSABV), Families of Autistic Children Engaged Together for Support (FACETS), Workforce Commission (TWC) Department of Vocational Rehabilitation (VR), Division of Blind Services (DBS), College Station Independent School District (ISD), Bryan ISD, Brazos Valley Rehabilitation Center (BVRC), and the Brazos Center for Independent Living (BVCIL), trainings are provided free of charge for family members and self-advocates ages 8 and up on every first Thursday of the month throughout the school year. Childcare is available for ages 3+ and dinner is provided for all participants. Professionals, family members, and parents have worked together to develop the trainings and materials as well as to deliver the monthly trainings. All on a volunteer basis. FY 2018 Sessions: September 7, 2017 Everyone has differences, mine just has a name-Talking to your child about his/her disability Hablando con su hijo sobre su discapacidad October 5, 2017 Why punishing your child may not be working Learn to change behavior with positive behavior supports Por Qu el Castigo No Funciona con Mi Hijo? Cambiando el Comportamiento con Apoyos Positivos November 2, 2017 You can get results (but they might not be for the best!) - Collaboration With Schools Puedes Obtener Resultados (Puede Qu No Sean Los Mejores) Colaboracin Con Las Escuelas December 7, 2017 Your unexpected journey- including the recurring grief of parenting a child with a disability. Su Viaje Inesperado- Discutiendo el recureente dolor que puede ocurrir al criar un nio con una discapadidad February 1, 2018 I'm not fine- Supporting the emotional needs of children with disabilities. Handout not available. For more info visit https://namibv.org/ March 1, 2018 Phones and computershow safe are your children? Telfonos y computadoras- Qu tan seguros estn sus hijos? April 5, 2018 "No means No"- teaching your child to accept your "no" "Como Ayudar a su Hijo Aceptar No" May 3, 2018 We're all in this family--Supporting siblings Apoyando los Hermanos Sin Discapacidades *** SURVEYS *** 168 Surveys received  160 Family members  7 others (TAMU students, professionals, support persons)  4 IWD I (or my family member) was treated with respect during this project activity.  168 Yes | 0 No I (or my family member) have more choice and control as a result of this project activity.  163 Yes  5 No Families, self-advocates, and professionals are asked to provide feedback after each training. The "Purposeful Life" Leadership team uses this data to inform the following trainings and to make changes in content and/or delivery to best meet the needs of the community. Feedback from the community has been positive and the trainings have been well-recieved. 1. What has been helpful about this activity?  This helped me with how to communicate with my sibling with a disability  What to do differently when I get frustrated with the repetition (from usually not remembering her cognitive delay) and she gets frustrated not understanding no.  Gave me many possibilities to protect my child from internet related issues.  Specific tools that I took away to help with my stress and interact positively with my family.  For me this was the best ever because it verified my feelings (chronic sorrow.)  Articulating what I have done for collaboration and some tips and what to do when it is difficult.  Sparked my interest in positive reinforcement.  It was good to hear about how it's good to talk to your child about their disability 2. What did you like?  I liked the panel and how the young adults embrace their disability  Her sense of humor as well as the practical, concrete examples that were readily applicable. Also really enjoyed the food.  Learning better ways to collaborate with my little brothers and his school.  Joan Clark presented material that helped me understand my and my husband's experiences with our son's autism. The talk was easy to relate to after a warming up period of "why" we are talking about grief.  The way it was explained, very organized  Internet safety as presented in general especially the risks  The presentation material and style. I loved her upbeat engagement and calm thoughtful answering of questions.  Loved the sibling panel! 3. What did you learn?  More info about how to effectively talk to my son about his autism  My son is a good kid who doesn't have a lot of good structure. Now I know how to deal with my anger when my son pushes my buttons.  How to keeps notes and communicate with teachers  Learned about constant sorrow being normal- will share with husband.  I learned how to use these tips to help my son- I will be able to help my family calm down quicker.  I will go over this info with my children. Very good idea to tell kids if they make a mistake or do something wrong to go ahead and tell you. Dont be afraid to tell you so the problem wont get worse.  How to effectively tell my son no- I will try to use it tonight, not give negative attention.  Many of the siblings enjoyed the relationship with their siblings- going to get the listed resources and use tools to talk to my son. 4. What would you change?  Nothing- 31 ** Sibling Session  the translator needs to know more Spanish  perhaps an activity or two would be helpful in sustaining attention  talk to other kids about expectations  mic did not work to well  more siblings in panel?  possibly going into more detail, having more Q&A  more specific examples/stories  the presentation was not at all that clear!  a broader array of reference points **Internet safety  for internet safety- few examples showing cyberbullying online and all other risks  more people attend  Super minor- but I would have liked to have seen the comics/images  not much- I would like to see a class for all teens  short demo with actual computer so we feel comfortable doing it at home or on our iphone  more time  this could be expanded  maybe breaking this into two sessions **Grief  add a bit about the grief of a child with a disability  not enough time  more interaction **Collaboration with Schools  maybe give examples of how it really looks in the ARD meeting  Could probably use a second session- role playing, etc.  room temperature! nose froze **Positive Behavior Supports  more time or break into two sessions  more time, maybe consider making this topic over several sessions  she needed more time **Talking to your child about their disability  There seemed to be a translator in the back. At first I resented what was going on and the extra noise. Maybe the translator can speak more quietly or the audience can be told what is going on.  My experience with my sons with DS is quite different that Brynn's or other high functioning students. My son doesn't see that his disability has significant challenges because he is accommodated so readily and expectations of accomplishments are so low. 1. No ramifications to not doing the work successfully. 2. Expectations lowered with his lack of performance- he never failed- leading to an attitude of "just turning something in" never had to re-do it. Attention to detail was not expected- nor accomplished. BIG ramifications now that he needs to be looking for a job.  Age limit for sibling class (resolved)  have more q&a time at the end

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2.3 Purposeful Life: Family Training Series (Sumbera/Day)