I’m Thankful For…
I often feel that I am in fight mode. Advocating for my son is one of my most important jobs. I feel that I am constantly working to put out some sort of fire, straighten out a complication, or trying to prevent something from going off course. It is often so easy to focus on things we need to accomplish or improve that the things we are grateful for can be easily overlooked. For the month of November, many of my friends on social media have taken time to post something that they are thankful for each day.
Here are a few things that I am very thankful for:
My son is on a program called MA-TEFRA. For those that are unfamiliar with this program, it is a way for Isaac to be on medical assistance based on his disability regardless of household income and assets. This program covers his medical appointments, therapies, adaptive equipment, and incontinence products. We do pay a parental fee (based on household income) but that fee is nothing compared to what we would have to pay for services without this program.
2. Peer Support
Along this journey of raising a child with special healthcare needs, I have been fortunate enough to connect with some super savvy parents who have provided me with a wealth of information, resources, and support. I have found that the best information and tips I have received have been from someone who has been through something similar and can share their experience. Peer support has helped me become a better advocate for my son. I have strengthened my understanding of county services and system processes and feel more confident in my ability to navigate healthcare systems that impact my son and our family. If you would like to connect with another parent for peer support, please contact us at Connected@familyvoicesmn.org.
3. Our Healthcare Team
In addition to my son’s primary care provider he sees 7 specialty providers that all play an important role in his overall health and well- being. I am so grateful that we have built a team that understands patient and family centered care and my role as his parent and advocate. As an important member of this team, I feel that my concerns are always addressed and my voice is heard. This team understands that I know my son best and is open to new ideas and approaches that may improve things for our entire family.
4. School Staff
Sending my non-verbal child to school has been one of the most terrifying and challenging things that I have done on this journey. I am so thankful that we have a school team that genuinely cares about the well-being of my son. His case manager and 1:1 para are absolutely fantastic! I feel that there are always things that can improve in regards to his education, but I know that he is safe and cared for when he is at school.
5. Family Voices of Minnesota
My work as a Parent Support Navigator with Family Voices of Minnesota and the CONNECTED program has allowed me the opportunity to connect with other parents and help them navigate through this journey that is often very isolating. I often get to help parents through something I have personally experienced, or help them find information and resources that will be beneficial to their families and situations. It gives me great peace and happiness to know that I can be there in the moment with another parent to help them through another chapter.
Written By: Jessica Randall, Parent Support Navigator