It has been one year since this poor blog was updated. As the kids get older, life gets busier with extracurricular activities and such. Leanne has many medical appointments, but she never complains. With the help of a wonderful caregiver named Cindy, Leanne is also able to participate in many fun activities including Special Olympics bowling and cheerleading, participating on a special needs dance team, and volunteer work. Having the support of a paid caregiver means that everyone receives high-quality attention as well as maximum opportunity to participate in fun activities, as I still haven't figured out how to clone myself and be in multiple places at once. Even though I know now that hiring Cindy was the best move for everyone, accepting that I needed help in this domain was not easy for me.
It's all too easy for caregivers to fall into the trap of martyrdom. We want to believe that we can do it all; that we, alone, can be everything to everyone. But this mindset can give way to fatigue and burn out. Josie and Leanne share the same case manager, assigned by the state, to help make sure they can access the services they need including supported employment, transportation, respite, housing, and healthcare. We're fortunate to live in a state where many services are available to individuals with disabilities, and yet sometimes, it's still hard to embrace the suggestions the case manager offers. And sometimes the hoops one has to jump through to arrange services with paperwork, waiting lists, and staffing shortages serve as a deterrent.
Often, caregivers are so overwhelmed that the idea of slowing down enough to research, recruit, interview, hire, and train help feels like too much to take on. Josie recently went months without a respite provider and we managed. But as Merryn and Lydia continue to participate in competitive swimming and many other extracurricular activities, I realized that it would be helpful to have someone who could stay with Josie so I could shift focus to my other kids. I embarked upon the intimidating process of emailing local college professors in pursuit of a student who may want to work with Josie, and I found a wonderful young lady, whose own brother has autism. She brings over all sorts of therapeutic and educational activities for Josie and Josie absolutely loves the 1:1 attention she offers. Josie also appreciates not being dragged along to her sisters' activities. And mom appreciates being able to focus on the swim meet instead of entertaining Josie.
Caregivers, please know that I get it, but it's okay to seek help. It is absolutely worth the hassle. Everyone is better off. In fact, accepting help can enhance your relationship with the individual that you care for, and it can allow you to be a better version of yourself for everyone else in your life.