A few weeks ago a group of friends were out and somebody mentioned the 5-year plan. It brought back memories of a few years ago. During my days in nursing when we were newly trained graduates, we all had a five -year plan. Our aims included getting experience in our relevant fields, getting some finance together, travelling the world and, if we met a significant other in that time, that was all the better. Life went on and we went our separate ways, but we still stayed in contact.
The travel, job security, finance aspects all happened as did meeting the significant other. Then, the thoughts turned to the next generation. The end result was to be a healthy baby, with 2 energetic parents to support him/her. Like most new expectant parents, thoughts turned to what the baby would look like, what kind of personality they’d have, and of course we would be instrumental in the accommodation of all their health and educational needs to support this new imminent arrival. To this end the college fund was considered.
When the baby arrived, things did not go according to that plan. Our son was born with Down Syndrome and an abnormality of the bowel. Major surgery was necessary within the first three weeks of his life, with further surgery over the following 2 years. The plan of walking the baby and endless coffee mornings while on maternity leave turned into meetings with therapists, surgeons, public health nurses and hospital appointments. At that time, it is fair to say that we existed in a world surrounded by thick fog in a long tunnel with no way out—or so it felt. One could only think of a future of loneliness and isolation for our baby. When asked at that time what we wanted for our son we would have answered that we wanted him to be independent in all activities of daily living, to have literacy and numeracy skills, to be able to live independently and hold down a job, and to be a service contributor and opposed to a service receiver.
Over the next 3 years the fog began to lift and the future seemed to re-emerge in a different way. Instead of a life changing event it now began to feel like a life altering event. The realisation is that there is a plan which contains different expectation than my original one.
All the major milestones were achieved, albeit he reached the developmental milestones slightly later than the expected age range. Now we are looking at an 11 yr old boy who is in 4th class in mainstream school and has a full and energetic timetable. The future now focuses on the education element and weighing up of options, i.e. mainstream vs. special education. What I have learnt over the last 11 years is that I had not taken into consideration the life trajectory of the others in my 5-year plan. We needed an approach based on both parties working together who share a common goal. To advance my son’s plan he needs to be consulted in every part of it. He will have an education until the age of 18yrs. Up to then there is a plan. After that is the great unknown.
Research shows a fundamental change in how services are coordinated for adults. The buy-in from all stakeholders, especially the person themselves, their family and service providers, guides us towards a more person centred configuration. What we as parents may realise is that thinking outside the box is a crucial aspect of forward planning. The services were not so flexible in the past, with parents feeling very vulnerable and in ways forced to accept what was on the shelf and sometimes being defined by altruism. The process should be an open exercise and not be consigned to a single two-hour meeting to schedule somebody’s future.
There is too much at stake. We should bear in mind that service providers do not always get it right and in hindsight decisions may have been made which did not always centre on the individual, but on what suited the overall picture such as a vacancy that may have been available at the time.
This was then and now is now. There also is an onus on advocates for the individual to explore and discover what can be tailored to ensure the person is best placed to realise a satisfying life of contentment and contribution. Family support is paramount and the fundamentals must progress from a tangible plan of what, when and where to focus on questions like what will make the individual happy. Consultation with the individual is the key approach. Future planning should be based on capacity and ability, as opposed to one-size-fits-all. On-going education on up-to-date research is important for service providers and families. The challenges are around finding resources in places we are not used to looking. No longer can we expect that funding without limits will be available. What we should be looking at is the individual’s own natural circle of supports and using these as the first port of call.
The landscape is changing and whatever the future will hold, it needs to include connectedness for our son to his family and friends. He needs to be content in himself and be allowed to make choices for himself- We will reach for the stars, and we may get the moon. I will then be asking him to tell us what HIS 5-year plan is!