As my own child transitions to young adulthood, I look to those who have gone before me for guidance and support. In this week’s blogs, we discuss out of home placement from a parent’s perspective. Two veteran parents, Joy and Sara share their stories with us this week.
Audrey is a beautiful teenager with ASD who is also deaf and has a history of significant behavioral challenges. She recently moved out of her family’s home. Her mom tells us how the family is doing.
Lynn: How is Audrey doing since she moved to her group home. How did the adjustment go? Was it easier or harder than for her than you’d thought?
Joy: The transition for her has been remarkably smooth. I had lots of scenarios in my head before she moved – from complete disaster (she’d be upset and distraught all the time and unable to calm) to very easy, because she has always loved going to respite since we started doing that a few years earlier. But my mother’s instinct was that if we set it up right – describing to her as much as possible what to expect, and with schedules and calendars showing when she’d see her family and all the other people who are important to her – that she’d do well. Audrey likes new things as long as they don’t throw her off too much and there are people around who can understand her and meet her needs.
And that’s what happened, really. She moved a couple of weeks before summer break started, which I chose on purpose so she’d still have the familiar routine of going to school while coping with the home change. She was definitely a little on edge for a few months. The summer had the multiple whammy of the usual behavior difficulties because of no school, plus it was probably sinking in for her that this move was more permanent than respite, plus the house staff were still getting to know her and getting the right routines and supports in place for her to have the consistency she needs. So, with all that, I was amazed that her comfort level and behavior seemed about on a par with any summer, given that summers are never her favorite!
Now, seven months out, I would say this experience has actually matured her. She seems more confident in different situations, more able and willing to reach out to a variety of people to communicate and ask for help with things. She is affectionate and mostly pretty compliant with staff, and they truly seem to like and appreciate her, are excited when they find things she likes to do, and honestly keep more consistent rules and routines for her than I’ve been able to do for years – even though I knew they were important. I see her once or twice a week and she always loves our outings. But she’s also always perfectly happy to get home again, throw herself into her huge beanbag chair and watch Teletubbies or Elmo’s World that her housemate also appreciates.
Lynn: And how about you? How are you doing? How was your adjustment? Was it easier or harder for you than you’d thought?
Joy: The change for me was horribly, horribly painful and stressful heading in – making the decision, visiting the potential group homes, working through the red tape (although there is lots of help with this). Mostly it was an emotional quagmire. It felt like a decision that HAD to be made, and that I knew was the best (only!) one – but it tossed me back into a whole new phase of grieving her disability that felt just as fresh and painful as ever before.
BUT once she moved, and particularly when it quickly became clear that Audrey was doing well, not feeling abandoned (on the contrary – she now has tons more people to boss around), and was well cared for – then I could relax (collapse) and realize just how incredibly liberating it is to have her out of the house. In some ways I’m still discovering this all these months later. Having enough sleep for the first time in 15 years really makes me feel much younger, for starters. Everything feels easier. I no longer dread coming home after, say, a busy day of appointments that I had respite care for – now I come home and hardly know what to do with all this extra free time that’s appeared in my life.
Lynn: And for her sister? How did she handle the changes?
Joy: Margaux was not in favor of her sister’s move (“How will we be a family if she’s not living with us? What if they don’t take good care of her?”), although she understood why it was happening. So it’s been particularly rewarding for me to see how she’s also adjusted well to this change. I know she couldn’t imagine what it would really be like to have a home without Audrey’s disability skewing everything – neither could I, really. The freedom to spread out her art projects without fear of her sister messing things up, the ability to snack on a granola bar without guarding it carefully so Audrey wouldn’t snatch it – those are BIG even though they sound trivial. And now that she’s experiencing these freedoms – and sees how happy Audrey is too – she’s relaxed in ways I’ve never seen before.
Lynn: What do you think Audrey likes best about her new place?
Joy: I get a definite sense that she knows it’s hers, – nothing in the house is off-limits (except her housemates’ rooms of course). There’s a TV where something she appreciates is usually on, she can drag her beanbag chair and put it wherever, she has people who are never tired of catering to her needs, keeping her safe, keeping a steady schedule with as few surprises or unplanned stretches of time as possible. They go on outings geared to the kids in the house, not outings that are what her “typical” family members want but don’t really interest her at all.
Lynn: Sometimes parents want to wait until their child’s behavior gets better before seeking out of home placement. Has Audrey’s behavior changed at all?
Joy: It was important to me that Audrey be able to communicate her needs with a certain degree of confidence and success before she moved out of our home, but it was becoming clear to me that her behavior could probably improve in the right setting compared with our house, because I just couldn’t maintain the boundaries she needed anymore. And that is what has happened. There’s been no major changes, and I know her meds still play a key role, but overall she is certainly steadier and better able to deal with disappointments and sudden shifts in her day than before – and also probably experiencing fewer of them.
Lynn: Any new challenges?
Joy: I think the challenges are more mine than hers. Working out a visiting schedule that feels right to me (which partly means pushing away any and all guilty-type thoughts involving what I think people might expect of me as her mother, as opposed to what she and I need), which is hard in some ways because her house is a good 45 minutes from ours, so visits involve a big chunk of driving. The other big one for me is figuring out what I want my role to be vs that of the staff – such as doctor appointments, therapies – where again I need to figure out what her needs and my wants are, rather than keep being driven by “shoulds” or fears of what will happen if I’m not there.
Lynn: What have you learned from this experience? About Audrey? Yourself?
Joy: I learned – and now I’m crying as I write this – that Audrey really loves and appreciates me. She is SO excited every time I visit, and asks for me and about my visits all the time. I get hugs, smiles, kisses, laughter from her in much huger doses than ever in our lives before. And I’ve learned how much I still enjoy her when I’m not wrecked by her constant needs. I’ve also started to see her as much more mature. I can see the teenager in her, I can see how confident she is in many ways, I can begin to picture what her life will look like moving forward and not panic about it, because I think that, while she will always need a very high level of care – she’ll be fine. And so will I. I know that we’ll figure it out.
Lynn: Would you do anything differently?
Joy: Well – yeah, I’d try to feel less heartbroken and frantic about the process. But I don’t know if that’s possible.
Lynn: Parents often express that they can’t even imagine having time – to do so many things that are a challenge to do with the 24-7 caregiving. What have you discovered about having time now?
Joy: I’ve discovered that weekends and evenings actually contain lots and lots of time. I’m typing this at 7pm, and when I’m done I will still have time to do whatever – watch TV, or read, or bake something, or do laundry, or just sit and stare with no need to do anything. Or even go out and run errands or see a movie or sit on the beach in the rain. There’s actually so much time now that it makes me feel a little panicky at times, and also just amazed that this is apparently the kind of time most people have, in their non-disabled families. I think I will always appreciate this spaciousness, even as I continue to single parent and run my own business and have all the demands associated with those things. I know what it means to just be able to read for a stretch of an hour or two, regularly, like every week! And not be in a tired fog all the time.
Lynn: What advice do you have for other parents who wrestle with trying to figure out “the right time” for the transition out of their family home?
Joy: I suspect – at least for me – that no time would have felt “right” because Audrey is vulnerable, and beloved, and would not ever develop naturally towards moving out on her own. It was going to be a decision I made for her, that felt to some degree like a failure on my part. I know intellectually that’s not true – but my point is, as long as your child is dependent, disabled, developmentally delayed, this move is going to feel like pushing them out of the nest when they’re not ready and cannot make that choice for themselves. And what parent wants to do that? None of us! So even though I had a kind of fictitious “when she’s older” scenario in my mind (18? 21? I never defined it of course) – nothing about her would be that different in those three or six extra years.
So my advice from this side of the fence is – the grass really can be greener over here. And, you know, we’re in this for the long haul.
We’d like to thank Joy for sharing her story with us. Stay tuned for Sara’s.