The start of the academic year can signal a new phase of life for parents as well as 18 year olds; over the last few years I have watched my fifty-something friends learn to cope as their sons and daughters depart for university. Empty nest syndrome, I claimed, was one thing I would be spared.
Although I try to offer Dylan age-appropriate opportunities, the nature of his disability affects the timing of key milestones. For many years I was determined that Dylan would experience being away from home in the same way his non-autistic peers leave for university. I discovered, however, that it is virtually impossible to access funding for this; residential places tend to be associated with crisis rather than choice. Dylan therefore continued to live at home after he left school and I avoided the challenge of an empty nest.
As it happened, by the time Dylan left school I was glad he wasn’t going away. Although Dylan’s chronological age was 19, developmentally he was around five years old (I reflect a little more on the gap between chronological and developmental age here). Very few children are sent away from home at such an age and those who are often report painful memories of their early separation from family. My instinct was that Dylan needed longer at home.
I was aware, however, that I couldn’t look after Dylan forever; we are on reverse physical trajectories and caring for Dylan alone was becoming increasingly difficult. I have always believed that 26 is the age we tip from child to adult, leaving behind the experimental years for something more settled; as Dylan reaching this age would coincide with my retirement it seemed an appropriate year for me to set as a watershed for Dylan leaving home. I knew this could only be aspirational – some autistic adults continue to live with their parents for much longer – but it would give us something to prepare for, practically and emotionally. There wouldn’t, I told myself, be any sudden emptying of the nest.
It is natural for parents of disabled children to feel protective but I have perhaps been more inclined to this because of my experience with my daughter. While I might not have had to face an empty nest I have had to cope with sudden absence. When my daughter was 14 she failed to return after a routine access visit to her father; for the next year I didn’t have any contact with my daughter or know anything about her life or how she was. The only information I received was through my solicitor’s communication with my ex-husband’s solicitor; the details are a case study in how not to co-parent a child following divorce. That story is not for here; this week, however, I made a link between my expectations about Dylan’s future and my daughter’s departure. To draw this connection I need to reflect a little more on my daughter’s sudden absence.
My daughter would be 16 before I saw her again. By the time her father and I had slugged things out through the courts she was settled in a new school and country. Although I hadn’t wanted her to leave, in time I adjusted to her being elsewhere. Nothing would ever make Dylan or I as happy as having her home but eventually we embraced the gains as well as the losses of living on our own. Dylan and I drew closer and he benefitted from having more of my time, attention and support than he would otherwise have received. When my daughter decided to resume her schooling in England and returned to live with us, we all struggled; she had got used to a different way of life and in the years she had been gone Dylan and I had got used to our own way.
When my daughter decided to return to Scotland for the final year of schooling I thought it wouldn’t feel as bad as before; this time it was my daughter’s decision rather than one that had been made for her and she was a young adult now, not a child. Still, I suffered; the prodigal had returned only to leave again. How could I have been so careless as to lose a daughter twice? One day, hopefully, I will make better sense of it; for the moment I tell myself that life is complicated and decisions often multi-factorial. As Pascal reminds us: la coeur à ses raisons que la raison ne connaît pas.
Written on the body
If the heart can direct us with its reason then so can other parts of the body. The first time my daughter left, my back broke down catastrophically. After the initial shock at my physical collapse I wasn’t surprised; my back had behaved this way before when I was in deep grief. I have heard it said that the spine represents esteem and that back problems arise when our sense of self is under threat; my daughter’s disappearance certainly undermined my identity as a mother.
I was immobile with pain so decided to see an osteopath. The one who was recommended and who I have seen since is a Hakomi practitioner who, as well as working miracles on my body, offers me alternative ways of thinking. Once my back improved the pain moved into my left jaw; it was so bad I could barely open my mouth. I had extensive medical investigations which revealed nothing. Have you considered that the difficulty with your jaw might be about the blocked communication with your daughter? the osteopath ventured one day. It may be coincidence but after my daughter made contact my jaw healed. When she left the second time my right arm developed a problem which didn’t resolve until I’d learned to live alone again (without my right hand daughter).
Last year I developed a left shoulder problem. At first I assumed this was an injury I had picked up in the gym (showing Dylan how to use kit I didn’t know how to use myself) but the osteopath offered an alternative reading: that shoulder might not improve until you can put down your shield. I had been fighting for provision for Dylan for so long I was battle-weary and bowing under the weight of my shield, she suggested.
In the weeks since I heard that Dylan’s funding has been approved the ache in my left shoulder has eased. This week, however, I complained to the osteopath: I’ve had a terrible acid stomach for days. I don’t understand why, I told her, I don’t usually have stomach problems. Perhaps there’s something in your life you’re finding hard to digest right now, she replied.
Empty or emptying?
During the last four years I’ve sometimes felt less than sympathetic towards parents with empty nest syndrome; they have had the satisfaction of supporting their sons and daughters to a planned departure at 18. What was there to mourn? With Dylan still around, and having already coped with my daughter’s absence, I would be spared the dazed emptiness I saw in the faces of friends and colleagues who had waved their children off, I told myself.
My stomach, however, may be telling me something else. Last week my daughter visited to say goodbye before she leaves for university in France. I was surprised by my sense of loss; although we had spent the last four years learning to live apart there was something different about our leave-taking this time. After I dropped her off at the railway station at the end of the visit I sat in the car park and cried; this, I thought to myself, must be the empty nest.
Perhaps when my daughter is safely settled in her new life I’ll start to relax. It’s possible, however, that the thing that’s hard to digest is not my daughter leaving but my son. Given changes to Dylan’s support needs, funding for residential care has now been approved. I know this makes sense; I am struggling to keep us both safe during ‘incidents’ (though there have been far fewer since the introduction of a low-sugar diet) and can’t offer the level of support Dylan needs to access the community. But when Dylan is his gentle self it is hard to accept the need for something I had thought wouldn’t happen until he was 26. My daughter had launched herself from the nest but Dylan would need a push; being left with an empty nest is one thing, emptying it myself quite another.
So I have been trying to digest the implications of this and figure out what is best for Dylan. I am well-supported; Dylan’s social worker, health care professionals, and his day and respite service are all in regular contact. The sense of community around us will make a difference to our capacity to manage the decision-making process I’m sure. Dylan and I have visited settings and drawn up a shortlist of providers. We are now at the point where a decision has to be made about whether or not to take one of these forward. I have been prevaricating; on good days I can see no reason why Dylan can’t continue to live at home but on difficult days I am resigned to him leaving, like his sister, suddenly and earlier than planned.
The blog community, I have discovered, can offer practical and emotional support to its members like any community. The other day I was reading the latest post from Juniper Hill Farms, a community setting in the US. The post reflects on communal living and some of the issues that can arise in relation to food choices and responsibility to others. As I was reading the post I was reminded of the benefits of communal living and of the opportunities for learning and development which such settings present. I could, I reflected, consider a residential place an opportunity for Dylan rather than a loss.
The Juniper Hill post also reminded me of the importance of finding ways to involve Dylan in decision-making; a paper cited in the post, on the right of people with developmental disabilities, argues:
The crux of the issue is that interdisciplinary teams (educational or residential) should not make decisions about the client’s future without client input (Bannerman, 1990, p.85)
This is going to be one of the key challenges for me in the days and weeks ahead. What makes the difference to how we feel about change, I think, is choice. When my daughter took control of her life and made her own choices about where to live and study it was easier to accept and support these. Choice may leave a parent crying in a car park but that is easier to stomach than the unease created by decisions made for a child or young person by someone else. The significance of Dylan’s disability makes it more difficult to involve him in decisions about his future but I have some ideas for ways I can try. An empty nest has to be better than emptying the nest and if I can think creatively about Dylan’s voice then, like his sister, he might fly.
Bannerman, D.J., Sheldon, J.B., Sherman, J.A. and Harchik, A.E. (1990) ‘Balancing The Right To Habilitation With The Right To Personal Liberties: The Rights Of People With Developmental Disabilities To Eat Too Many Doughnuts And Take A Nap’ in Journal of Applied Behavior Analysis, Vol. 23, Number 1, Spring 1990, pp 79-89
All photographs by Liz