This article first appeared in ‘The Art of Letting Go’ in Like a sweet cup of tea, Community Resource Unit, Brisbane, pp66-74
Letting go of people who are important in our lives occurs in any number of ways, some of which we choose and some we do not. The process of letting go and of moving ahead, even into unknown areas of our lives, requires much internal, personal work as well as an external implementation of our decisions. Enabling a son or daughter with a disability to experience life in his or her own way occurs at various stages of life. Some examples would be commencing school; the introduction of new support people into their lives; commencing respite care; and the transition from childhood to young adulthood. These experiences will be challenging to a child, but as parents, we are often exposed to our own fears and challenges as we embark on the journey of letting go our child in whatever way that may be chosen. This chapter discusses my personal view of the letting-go process, and describes the experience of both my daughter and myself as we create new ways of living – in effect, letting go of each other.
The Art Of Listening
At some stage those of us with daughters and sons who have disabilities will be confronted with situations in which we may be forced to contemplate how best to assist them to move on with their own lives. When my daughter was nineteen she went on a six-week hunger strike which was an extremely significant way of saying, “Mum, you are not hurrying fast enough to get me into my own home. I want to do things other young people are doing. I want to go to nightclubs, have a boyfriend, and go to TAFE.” At this time, my daughter was also experiencing considerable frustration at my levels of intrusion into her personal space. I think there is a limit to how comfortable a person will feel about a parent managing all forms of personal hygiene, the administration of medication and so on.
My daughter was pushing me to let her go and loosen the apron strings. During her hunger strike it was evident that she was experiencing the grief of coping with the fact that her significant disabilities would limit her ability to participate fully in life. Her frustration levels were extremely high and there seemed to be no relief in sight.
Although my daughter is unable to speak she is a very powerful communicator in her own way and it was clear that she wanted to regain power and control over her own life. Her hunger strike was not a passive exercise: if she had been unable to achieve her goal of getting me to be more proactive in the letting-go process there is no doubt that she would have continued on to a swift death through starvation.
Facing Our Struggles
As I witnessed my daughter’s struggles I also faced my own. Questions arose for me about needs and dependency. I asked myself, were my concerns based on my daughter’s needs or my own: should I be focusing on the need to let her move on with her own life or should I focus on what she actually needed and should have (for example, should she have the same level of support that I would offer my other son and daughter as they made their own transitions into young adulthood)? It was difficult for me to consider that my daughter and I were dependent on one another and that perhaps this was not healthy.
Concerns also arose about my ability to sustain my own role as the primary carer of my daughter over the long term. I looked back on the years I had coped since my daughter acquired her disability. I thought a lot about how I might continue to cope over the next ten, twenty, or fifty years.
As I saw it, managing the transition that my daughter wanted would mean that she would have her own place and that there would be new people in her life who I would not know. This would mean that I would not know everything that went on in her life. I really had to grapple with these thoughts, and with the issue of operating one way with her, while operating in different ways with my other son and daughter. This struggle was a strong indicator to me that I would have to be fair and equitable with all my children – what I would do for one, I would do for each of them. I began to work from the belief that she has the same right as her brother and sister to live a life of her choosing.
The Need For A Vision
As with any process of letting go I had found that it is important to think about what is needed to make the process work. I have learnt that it is necessary to have a strong vision and in this case it meant having a clear idea about what my daughter needed in her life, and about what she would need me for in that life. In my vision I saw the need to ensure that my daughter would feel secure yet not restricted. Other safeguarding components included ensuring that her parents, and her support staff, would also feel secure about the overall arrangements.
Another important aspect of my vision was my very strong belief in the reasons that other people might have for being involved in my daughter’s life. This was not a light bulb moment but actually took me some time to work out. I came to see that it was imperative for me to really believe that support staff, and other professional people who would be working for my daughter, would be there for the right reasons; that they would give what they could (even if unknowingly) to enhance my daughter’s life in some way. This was directly opposed to opinions that I had heard, and continue to hear, that staff should not to be trusted – that they will rip off the person they are supporting, or that they only work in the disability field because there was nothing else available to them. In contrast, I have found that the people who have come into my daughter’s life are there to do the best that they can and that they always raise to the occasion when something is needed.
While my vision was strong, many challenges arose about how to implement my vision. When my daughter acquired her disability, I experienced many difficulties with obtaining information about independent lifestyles for people who had significant disabilities. Research was not easy and there seemed to be no models, in either Queensland or interstate, which demonstrated a successful implementation of independent lifestyles in a person’s own home. The only person who inspired me to continue was a visiting speaker from Canada. Her daughter had similar disabilities to my own daughter’s and she lived independently so I knew it could be done.
Years later as I sought solutions, my overall focus was on my daughter wanting her own home and lifestyle and on my need to ensure that this would be sustainable over the long term. This was not something to be randomly begun, only to fall apart; sustainability meant having other people come in to my daughter’s life who would hold a strong vision of what was possible. While there were not many such visionary people there were enough to actually see the plans through.
One of my own strongest needs was to continue to believe in the vision that I held. Every cell in my body had to believe that my daughter was entitled to live the way of her choosing and that it was possible. This meant that I had to keep the vision even when others, who were disbelieving, openly opposed me. I would sometimes have to bluff my way through so that they would be able to see the vision and buy into it. I was acutely aware that if anyone had asked, ‘How could this happen?’ it would have been very difficult to prove because I had nothing to substantiate the rationale for my plans on my daughter’s behalf, apart from the vision. It was very important, however, to say, ‘This is possible’. There were times when people did not really know what they were agreeing to, but it was important to support them as they came to terms with what this vision would really mean.
In particular, it was important for my daughter’s support staff to become involved in her life vision. This meant assisting them to know what the vision is; where she has come from to this point in her life; and the importance of their roles, skills, interests and abilities in building up her life. It was also important to help them to see that my daughter would be building up their lives as well. Some support staff have said that their own lives have been changed as a result of supporting my daughter.
My daughter’s staff members have become involved as a self-managed team. They are valued members of my daughter’s life and contribute to her life along with her parents, siblings, and a human resource facilitator. In effect, we are in partnership with one another. Our partnership is one in which we work closely together; establish and agree on explicit aims; acknowledge the complementary expertise of others; show mutual respect and trust; communicate successfully; negotiate all decisions and actions, act honestly; and are flexible.
This team has become one that is self-determining in many ways, with staff members making day-to-day decisions, as well as assisting Belinda with her longer-term goals. They manage Belinda’s household finances, and interact with personnel who have responsibility for Belinda’s funds.
Recruitment of Belinda’s workers now occurs via the workers themselves. For example, they place advertisements at the local university, where they have found the greatest success in finding new workers. They then do some initial screening, such as getting a good idea of what an applicant is like when that person phones for an application kit, before the interview stage in which Belinda is involved. Insights into which applicant is selected is gained from Belinda, through her body language, her responsiveness to an applicant during the interview, and from existing workers who are present in the interview. We have found this to be a very effective method.
People tend to come and go with the university year, and we usually work around that quite well.
Facing The Fears
All parents have fears about things not working out for their sons or daughters and I was no different as I worked to implement my vision. I asked myself many questions: what if this doesn’t work, what if it proves to be a stupid idea? One of my greatest fears was that, after getting things going, something would happen that would mean my daughter returning home to live with us. That would have been my daughter’s worst nightmare.
There was also the fear about what happens when I die. I did not want to be like a ninety-three-year- old woman I met who asked me (in my role as a consultant) to make sure that her sixty-year-old son would stay with a particular service organisation if she died. I did not want to be like that, having nothing in place when I reached ninety-three. I know that I am going to die, and I want to know that everything will be in place for my daughter so that nothing much will change in the overall arrangements when this happens. Such arrangements mean ensuring that my other children do not have the prime responsibility for their sister’s care, and that those people in my daughter’s life would have already embraced the vision will continue maintaining the structures associated with that vision.
While I struggled with my fears and concerns I realised that my alternative was to do nothing at all. How could I live with that, knowing that my daughter was desperately unhappy living at home with a level of intrusion into her personal space that she did not want?
It would have been tempting to take the easy way out; there were others who wanted me to return my daughter to an institution. I knew that I could not live with myself if I did that. She had already lived through that experience and I was not about to make her do so again. There were also other considerations at that time: the consequences for my daughter, my husband and my other children if I did nothing; and the consequences of what would happen if I did not have the conviction to say what was needed to be done. I became clear that I would need all my personal capacity and resources, as well as the back-up of others, if my daughter’s wishes were to be realised.
Without all these things, my daughter’s life would not have become the way it is now. When I look back on what I was like ten years ago when my daughter made her desperate bid for independence, and compare it to the present, I know that I am far more convinced that her lifestyle does work. We have made possible my daughter’s lifestyle and she knows that too. I also know that if anything happened now, my daughter would not let me rest until I had done something to fix the problem, whatever it was. She is a very determined woman and she continues to direct me, as well as the others on her team, about what need to happen in her life.
It is encouraging to realise that my daughter now lives a far better life as a result of my personal struggles and the subsequent actions that were taken ten years ago when my daughter was nineteen. Her life is far more than interesting and independent than any of us could ever have imagined. Throughout the years I have continued to question my role and the outcomes associated with my daughter’s arrangements, not only for her but also for other people. This is a good thing. At no point do I believe that I can really rest because things arise that need to be addressed or changed. I daresay this will be the case for the next ten years as well.
Kathy Rees is directly involved in many aspects of the disability sector. She has worked in various government departments, and in the non-government sector on numerous projects supporting improvements to the lifestyles of people with disabilities. She has had considerable involvement with supporting people who have needed direct assistance with advocacy. Kathy is well known in the Queensland community for the innovative lifestyle support that she has developed for her daughter, Belinda.