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.

“There is room for change along the way. I might choose a different option along the way.” June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, shares that every parent has to make the decision that is right for them regarding out-of-home placement.

June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, talks about the range of options available for out-of-home placement and encourages parents to explore all of it.  She addresses general concerns about neglect and how she thinks about it — for her, the number of caregivers in the home is an important factor. “I feel more comfortable knowing that there are two or three caregivers in the home and they can tradeoff if they need to.”

June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, tells parents to be picky about finding just the right group home for their medically complex child. Go for visits and see if the other kids are the right mix for your child. What’s the schedule? How accommodating is the staff?  Be picky and trust your gut.

June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, describes the transition of Katie to a group home and how it gave them respite and more time for their other daughter Alissa.

June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, describes the awakening that eventually Katie’s care would too much for them alone at home, exploring all the options, eventually finding the right place, and transitioning to the new home. It was like respite.

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.”