Important of Advocacy and Self-Care - Retta Beery (Meeting November 5, 2016)

Meeting Notes

1. Importance of Self-Care - Parents of a special needs child are especially challenged.  Try to make time to exercise, carve out time with your unaffected child(ren), and spend time alone with your spouse to ensure your family foundation stays strong.  Find something bigger than yourself in to believe in like faith and community.
2. Be patient with yourself – Don’t beat yourself up when things aren’t going right all the time.  Not all stories are success stories, but many are stories of hope.  None of us are perfect; just move on when things don’t go your way.  Keep moving forward.
3. Respite and rest – Have trusted family and friends take care of your child(ren) so that you can have some time for you and your spouse. Even a short time for a break or even just to rest and sleep. You cannot run on empty. It is a necessity to refresh and refuel.
4. Be thankful – This may seem incredibly challenging at times but try to be thankful for what you have – your family, your life, your children.  Write these things down and the list will keep building, which will change your mood and your predisposition.  Being thankful can help your mood and balance, and in turn helps you move forward.
5. Use your voice – Do not feel that when you are in the room with a specialist that you don’t have a voice.  You are your child’s voice and you must speak up.  Sometimes it is difficult communicating with a specialist – perhaps the specialist is dismissive or you are speaking with anger and frustration – this leads to a situation that’s not helpful for anyone. 
6. Prepare your list – Go to the doctor appointment with your list of biggest concerns, key needs, your goals, etc. so that you can make the meeting productive.  Consider emailing your specialist ahead of time.  Keep it short and focused.  Highlight top two to three things in each category, try to get the priorities down to one to two paragraphs.  Brevity and focus makes you email/list much more likely to get read and responded to.
7. Leverage all resources – Access all the resources you have available and continue to search for new ones with confidence and empowerment.  Make networks and connections.  Build and be ready to lead your team of specialists.  Try to build a team – clinical or personal networks - that will connect.  It will take time.  You don’t know who might be a resource unless you engage them.
8. Don't give up - No matter how tough the road, don’t give up searching for answers or making connections. Keep moving ahead, one step at time.

Resources

"Mother's Determination, Next Generation Sequencing, art of medicine provide solution for twins"
https://www.bcm.edu/news/genome-sequencing/next-gen-sequencing-solutions-for-twins
 
"The Beery's Dystonia Support" website
http://dystonia.thebeerys.com/
 
Finding Hope in Whole Genome Sequencing: Retta Beery at TEDxYouth San Diego 2013
http://www.hopeknowsnoboundaries.org/2015/04/19/finding-hope-in-whole-genome-sequencing-retta-beery-at-tedxyouthsandiego-2013/