Connections: The Sauliner Family
Amanda and Jason are dedicated, busy parents of two young boys. Both of their sons (Marcus & Jase) have autism; their oldest also has other medical complexities. Parenting two young boys is exhausting as is; Amanda and Jason have the additional role of managing countless health team members, navigating frustrating systems, never-ending appointments, and of course the challenges that come with a diagnosis of autism. Times TWO.
Mom and Dad are a strong team, made even stronger by their perseverance to get the “right” supports in place that can support their family. (One partner that has been instrumental in supporting them in their journey has been NBACL ( New Brunswick Association For Community Living ).
The couple recently had the opportunity to enjoy some time away without the boys- something that never happens. We had the chance to speak with Amanda about self-care.
NAVICARE/SOINSNAVI: What does “self-care” mean to you?
AMANDA: It means being able to recharge. Have alone time or couple time. Doing something with friends. However, since we do not have supports for Jase (youngest son), this does not happen often.
NAVICARE/SOINSNAVI: How do you feel about prioritizing yourself?
AMANDA: That is a tough question for me. For years, Marcus came first. Before anyone or anything. Then I became pregnant for Jase. Splitting myself two ways is exhausting. Thankfully Jason and I are a good team.
NAVICARE/SOINSNAVI: I thought you could tell me a little about your trip. How hard was it for you to leave the boys?
AMANDA: Ahhh the trip… well, it was the fun of course! However, as soon as our plane landed and we boarded the bus for the ride to the resort, I got a message to call home. Long story short, Jase had been admitted to the hospital. Even after speaking to the doctor, I could not let go of the guilt of not being there. It was really hard to settle my mind after that. We had some great laughs and memories. I just wish it had gone differently. Now I have more guilt to live with. Moms are hard on themselves!
NAVICARE/SOINSNAVI: Do you have any advice to other families who have children with such high needs, around self-care or making time as a couple?
AMANDA: Yes, and no. People think it’s easy… It is so far from easy! By the time Marcus goes to relief and Nanny Lina may take Jase, we are worn out. There is housework to get caught up on. Errands to run. We are still working on that!
NAVICARE/SOINSNAVI: Do you have any tips for families who have circumstances similar to yours?
AMANDA: Gather as much support as you can. Find people you can depend on. It’s not easy! Use your community help! NBACL, social workers. Fight, fight, fight for help. And once you get it, put a plan in place and stick to it. And be aware it will fail. And you will have to start again. The fight NEVER ends.