Dillon is a happy thirteen year old young man with significant behavioral challenges who recently moved to a group home. His mom Sara shares their story with us today.
Lynn: What led to your decision to seek out of home placement?
Sara: I felt that out of home placement was something that would happen around age 18, but for us it came five years earlier than I had expected. My son Dillon is non-verbal, and a joy all the time, except for when he was screaming and biting himself, and later screaming and biting himself while attacking me. It was hard to determine the precise point at which my own lack of sleep and lack of ability to care for him got to be so profound as to be dangerous for him, for me, for our mother-son relationship, for my other kids. When ordinary life is hard, and it continually gets more difficult in small increments, it is impossible to remember that there might be a line, let alone know when you have crossed it. And when other people tell you that you can’t handle this, it is easy to defend all your choices, defend your child, and dig in. How does one decide that the only familiar mode of living, as a single family household, is no longer a useful mode to be working with? How does one decide to try something foreign, unknown, and without any guarantees of improvement?
I knew that we needed services for our child as an adult, I knew we needed services for him now despite not receiving any, and I knew that I’d have to apply over and over again just in case some funding came down the pike. When he was 12, at our third time applying for the state funding generally known as “a waiver”, we decided to ask for the “Voluntary Out-of-Home Placement”. I was at my wits end, I was devastated by spending an hour or more a day restraining my son from biting himself and me, and I was getting worse at it as he got stronger and more coordinated. His hands were getting infected from him repeatedly breaking the skin with his teeth. I was bruised, had bite marks and scratches, and was not sleeping nearly enough. Even when he was happy he did not sleep well (waking at 2-5am most days, without napping) and was a constant risk for running away, turning on faucets, emptying drawers, hiding my credit cards, etc. Does any of this sound familiar? All of it? Screaming for popsicles at 3am? Tantrums about riding on elevators?
I do not have any wisdom other than “advocate for your family”. Advocate for your affected child, yes, but advocate for the whole family while you are at it. Our path to out-of-home placement was full of opposites: thinking that I would never have out of home placement while our son was still a child, yet knowing that I couldn’t safely handle our son at all times; asking for and not receiving financial support from the state; calling meetings and filling out forms despite no real hope of assistance; knowing I was a great parent and fearing that I was not enough of a parent. After 14 months, I am still surprised every day that our son lives at a group home.
Lynn: How is your child doing since he moved? How did the adjustment go? Was it easier or harder for him than you’d thought?
Sara: Dillon had three difficult days at the new house. That’s it, and it was the first three days after the move. Other than that, for the last 14 months, he has been calmer than the he was for the previous four years. It is wonderful to have his hands healed, to have his tantrums reduced to few and far between. I have thought a lot about why this is, and while I can’t speak for him, I will try. His new life has two major advantages for him that did not occur at home. First, his visual world is much reduced. Before the move, he was with me nearly all the time he wasn’t at school. On a daily basis we visited multiple locations in the community, at least four or five a day. We drove to his brothers’ schools, shopped for groceries, did kid activities, went to his own numerous therapies, family gatherings, outings at parks, beaches, community centers, playgrounds, and coffee shops. His new life consisted of simply his home and school. For the first several months he didn’t even go outside to the back yard. Now he has the back yard, his room, the common rooms of the house, and school. He has one OT appointment per week, and I take him to a restaurant and a playground or park once a weekend. That’s it. His visual world is much simplified. He is not tortured by driving around the city, seeing all the places that he remembers and would like to stop at, without being able to stop at them and walk his routine. He doesn’t get to a particular intersection, remember that the zoo is one way, and have a tantrum once we turn the other direction because he realizes we aren’t going to the zoo.
The second difference is the limited task demands and expectations of him socially (and his expectations of the caregivers). At home I was quite persistent in engaging him in communication. At the group home, he is left to his own devices much more of the time. He is not neglected or ignored. But he is not sought out constantly, either. For instance, at the group home, one of the staff boasted that they were so impressed with how social he was. He would run out of his room once in a while, run to the group watching TV, and say hi, and run back to his room. This was met with joyful appreciation at the group home. At my house, I would have been insisting that he interact, insisting that he come out of his room or I stay in his room with him. I didn’t let him rest as much as he likes. On the one hand that is great – because my coaxing and insistent behaviors helped him become more social – but it was also taxing on him. Also, he expects me to understand him, whether I do or not. He does not have that same expectation of anyone else. He accepts that most people don’t understand his communicative intent. With me, since I know lots of his subtle communication clues, he expected me to understand all of them, and was upset when I didn’t understand.
Lynn: And how about you? How are you doing? How was your adjustment? Was it easier or harder for you than you’d thought?
Sara: My adjustment has taken much longer than my son’s adjustment. I was scared at first, and I was very, very sad. The unbearably painful part was that I was full of thoughts of how I hadn’t been a good enough mother to take care of him, and guilt for receiving funding when other families who needed funding were not being taken care of. I had to work very hard to turn around these two recurring and unhelpful ideas. At their core, I don’t believe either of them. But I had a case of the popular mother-as-martyr syndrome that infects our society.
A secondary type of guilt came as I realized how much better he was at the group home. My affected son is non-verbal, but even if he could speak I’m not sure that he would have been able to tell me what was the most difficult part of his day and why. Why had our family home been so stressful? Why had I not understood that driving around the city to the other kids’ schools was so difficult for him? The things that he loves also stress him out. We did lots of things that he loves, and that ended up giving him lots of stress. Other days, being stuck at home and bored stressed him out. It is hard to think of how I could have been a better mother to him. It is only with a lot of thought-work that I can say that I am being the best mother I can by giving him the chance to live outside our home, and by staying connected to him in the way that feels best to him (even when it is unfamiliar territory for me).
I have always done what I thought was best for Dillon. The journey to finding out what it is that he needs now, today and later this year, has been more painful for me than it need be, because of my own expectations in mothering. When people say that they’ll do anything for their child, they usually have a set of awesome difficult tasks in mind. They don’t usually mean “I will step back and let others help and deal with my grief alone.” Besides the obvious lack of contact and control during the time that I’m not with him, he does not even like me to take care of him while I visit him at his group home. He has his way of looking at the world, and for him it makes sense to have the group home staff in charge. When I take him on vacation, at a hotel or at a house, then I am the one doing the familiar activities of daily living, and he is fine with that, as he was when he was little. Since his move, when I am with him, I try to do any and every thing that he indicates to me within reason. When he tells me he wants to eat, we get food. When he wants to go to the playground, we go to the playground, rain or shine. When he tells me to go, I go. I’ve had a few truncated visits with him, but overall we’ve had amazing and loving and hilarious times together. It has been a slow transition for me to see him as a whole independent person who is in charge of things, instead of a dependent person that I am in charge of teaching. But it has been a very positive shift for both of us. And it fulfills the main reason that I asked for him to have out-of-home placement: I had seen our relationship deteriorating, and I wanted to rebuild our relationship so that I was the most loving, accepting, understanding, and adoring person that I could be for him.
Lynn: What do you think he likes best about his new place?
Sara: He is happy to be more independent. He is happy to have a more simple experience on a daily basis: his physical position in the world is less complicated, and additionally his task demands are fewer. He is happy (as I am) that our mother-son relationship has been restored to almost exclusively loving, adoring and celebrating, instead of mostly restraining and training. He has made incredible strides in his emotional development, his communication and his physical coordination. I am amazed every week at something new he does, or something he does more easily than the previous week. This type of growth may be because he is a new teenager and his developmental path is unfolding at a faster rate than before, or it may be because he is less stressed out, less anxious, and he has brain power left over to develop rather than to just barely make it through the day.
He has always loved music, and loves requesting me to sing snippets of songs. He has his own system of sign language, gestures, and word approximations to request different songs, to request whistling instead of singing lyrics. He feels powerful when I do what he requests, and I feel terrific helping him feel powerful. This is how I am uniquely useful to him, how I add value to his life. Being his adoring champion is the most loving and important gift I can give him. That is what was being lost as his home care got more and more difficult.
Lynn: Sometimes parents want to wait until their child’s behavior gets better before seeking out of home placement. Has your child’s behavior changed or improved much?
Sara: I didn’t want his behavior to get better for placement, I wanted his behavior to get better to stay at home. It wasn’t happening. I cannot say that my path was planned out, it was as reactive and unscripted as they come. But I was happily stunned at the improvements in his behaviors….. the changes showed me that his quality of life had improved greatly.
Lynn: Any new challenges?
Sara: There are lots of new challenges for me. Most of them can be grouped under the heading “loss of control.” Giving up control of the details of his life is a big deal for me. He had certain foods, certain songs, certain routines that we did that worked for us. I spent a large amount of time considering his moods and needs and planning the minutiae of our day. Giving that up is uncomfortable for me. I would like to say it is painful, but really it is a major discomfort that I tend to hide behind instead of thinking up new ways to live a full life.
Lynn: What have you learned from this experience? About your child? Yourself?
Sara: My biggest lesson came from my eldest son, Max, who is a year and a half older than his brother now living in a group home. One day, nine months after the move, we all visited and had an outing at a playground. The entire visit did not go quite as I had planned, and had bumps in the road at every transition. After returning his brother to the group home, I was with my eldest child and he noticed I was a bit sad. He asked me what was wrong. I know that our visit was successful today, I said, but I’m still having trouble accepting that this is what success looks like. It feels to me like it should be more fun and easier for everyone.
Max said to me, “Mom, look. I’ve been in lots of group projects at school. I’ve been with amazing classmates that I love. And each time I’ve been in a group project, it turned out differently than I thought it would. I had to be flexible, and realize that the group project was not going to look like what I had imagined. But I still love all the people, I still think they are great, and I can be flexible enough to like our project.”
He went on. “Our family is a group project. Every member is amazing on their own. We all have interesting and wonderful things about us. And right now, we are all better off than before. So maybe this group project doesn’t look like any of us thought at the beginning. But we are all part of it, we are all better off, and this is how it should be. You just have to be flexible.”
It still brings tears to my eyes to recount that profound conversation with my 15 year old. And he’s right. I’m the one that has to be flexible in considering what success looks like.
Lynn: Would you do anything differently?
Sara: That is exactly the question that I can’t ask myself. On one hand I wish I knew. On the other, I don’t have time to even consider it. There is too much work in front of me to do – to take care of all three of my kids, my husband and myself as best I can, today, with our current situation.
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?
Sara: I feel like a student of self-care. I can’t believe how long it takes for me to exercise, shower, and cook reasonably healthy food. I spent so long without doing those things that it feels crazy to devote precious hours to it. I have been in grief for nearly a year. I’ve been doing things that I thought would help – and for a year it all seemed very difficult, but I worked hard on my life and my family. This included thought work (working through guilt); grief work (crying, meditating); social connection work (reconnecting with friends, family); “other kids” work (talking to my two neurotypical kids, playing games with them, volunteering at their schools, helping them with homework, watching their athletic events, nurturing their relationships with each other, with me, with their brother no longer living in our house); reconnecting with my husband; sleeping; reading; reinitiating hobbies; volunteering at the Autism Center, being a larger presence in my Autism Moms Support group, travelling and visiting friends in other cities, spending time on improving my house, training for a half marathon. As I write this, I wonder why I feel like I haven’t “done anything” since my son moved. After a year of this type of effort, I joined a beginning quilt class, and within an hour I felt like my old self. My really old self, before kids, before marriage, before I remember thinking about myself at all. I thought I’m back!!!! with glee. I felt like a friend had returned, a friend with positive outlook and energy and creativity. I have thought I should get a job but I will not do that until my thought is I want THAT job. My new mantra is I have done enough. The extension of that is that anything else I do in this life will be because I want to, because it is important and in line with my priorities and values. How can I add value to the world, in a way that I might not be doing right now? Being healthy and having enough sleep are required for inspired activity.
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?
Sara: I would say that it is important to understand which of our thoughts are true and helpful to you, and which thoughts aren’t true and helpful but rather mire you in blame and defeat. For example, My kid has needs that cannot always be met by one or two parents sounds true and helpful to me, with a hopeful map for how to proceed at some point in my family’s life, whereas I’m not a good enough mother to safely take care of my kid is a painful, unhelpful thought for me that includes blame and despair. Another unhelpful thought is I would never give up my child. No one who knows me would say that I didn’t work hard enough to make a good home for my three kids. But I had never met a kid as exceptional as my middle son, never met someone whose brain works the way his does, whose sense of comfort and anxiety is so far off of my own.
I can’t feel your pain or know your limits or predict your kid’s trajectory. I can’t write the story of how you got to this point in true, helpful sentences. I know how scary that is. But last year I knew none of those things for my own family, yet we survived and grew through this experience. Every part of this journey has been unexpected and different than my preconceptions. Isn’t this the basic reality of parenting? I had no idea just how much I didn’t know.
We’d like to thank Sara for sharing her story with us and invite fellow parents to do the same.