June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, explains how she and her ex-husband share guardianship now that Katie has transitioned to adulthood. “I have to consult with him on all those major decisions.” They process things differently but they usually see eye to eye.

June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, describes the various sources of support — when it can come from family, when it can come from friends, from a support group, from medical providers. “You find the people you feel comfortable with who will listen while you process.”

June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, describes how she found support in the early years to cope and have hope, especially from fellow parents. “Other parents get it.”

June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, describes living in the not-quite-certain-what-it-is-space, not knowing the prognosis. “If you don’t know what it is, where do you go? Early on, I thought, if we knew what it was, we could do a better job of caring for her. .. And then I adapted to not having a label.” How do parents plan ahead? When to plan ahead? Living with the unpredictability.

June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, shares the peril that parents feel that every decision they make is a critical decision and that there is always more medical consults they could do. “I encourage families to think about who their most trusted providers are who they feel will help them make the best decisions.”

June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, discusses how hard they would work and hope in the early years for progress and a change, how overwhelming the To-Do list was from specialists, and the pressure she felt to be a good parent. And how she had to shift her expectations and give herself permission to set her own priorities.

June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, shares some of the positives and negatives of parenting Katie as a single parent. The decision making is easier but it can be tiring and exhausting.

June MSW, LICSW, ACHP-SW — mother of Katie (28), who is medically complex and likely has Rett Syndrome — and Alissa (23), talks about how she is introducing Alissa to some of Katie’s systems of care and legal documents because she is an integral part of Katie’s life.. “though I don’t want her to ever feel responsible for Katie’s care.”

June MSW, LICSW, ACHP-SW, mother of Katie (28) — who is medically complex and likely has Rett Syndrome — and Alissa (age 24), describes how her typical daughter evolved her understanding and questions about her sister, and how she parented her through that. “Around four, five, six, she started asking questions: How come Katie can’t talk? why does she have seizures and I don’t? … It presents different challenges at different times and I’m open and honest with her and reassuring.”

June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, describes the complicated and cumbersome process of getting guaradianship when her daughter transitioned to adulthood. So much paperwork, notifications, legal bits. Also — Guardianship doesn’t automatically cover critical decisions such as medical orders. “It was surprising and upsetting to learn that I wouldn’t have the authority to make all the decisions I had before. I was flabbergasted and angry. I know her best.”