This is a story of two caregivers and the service they provide for two young men seeking independence in two very different sets of circumstance.
Nate and Max
Let’s look at Nate and his charge Max, a 22-year old with Down’s Syndrome. Since Nate’s arrival on the scene significant progress has been noted. Before Nate, Max was overly attached to his father who lives in one side of a duplex while Max occupies the other side in a group home format with one other man, each with their own care plan and caregiver.
On his good days, Max was an excitable and enthusiastic young man, fond of super heroes and music. On his bad days, his mood could cycle to combative and argumentative – a real handful for care providers. Max struggled with impulse control which expressed itself in behavior problems and poor diet, leaving Max extremely overweight and often unhappy. The group home environment had devolved to a chaotic, messy and even dirty space.
Several months ago, another care provider had intervened to engage Max and his housemates in a deep-cleaning and organizational mission. This mission turned into a reset of sorts for the house, the housemates, and Max in particular. As Nate arrived on the scene, armed with a care plan for Max and an intuition that some significant behavior changes could be made using the cleaner more organized environment as a way to attach incentives and awareness of healthy behaviors which would foster more independence and stability for Max.
In addition to a more orderly home environment Nate encouraged Max to make better food choices and to get moving by rewarding with favorite music to dance to. The results? Significant weight loss for Max, a heightened sense of responsibility, independence and a much better environment. Max is still enthusiastic and excitable but that energy is channeled towards articulating and achieving his goals. Max is known to loudly chant his mantra: Do it good! Make it better!
In many cases care providers are engaged to “do-for” what the client cannot do themselves. Nate’s wisdom and insight to know that Max’s journey towards independence is more about enabling Max to “do-for” himself. We give kudos to Nate for his dedication and commitment to Max. Recently, we had another caregiving engagement where we thought Nate would be a good fit. Nate declined because he felt Max’s gains in independence were too new to sustain the loss of the connection he had established as a trusted caregiver. That’s dedication.
Sieta and Thomas
By contrast the relationship between Sieta and her charge, Thomas, are very different from Nate and Max but no less critical. Thomas is 20 years old. His disability comes from the physical challenges of Cerebral Palsy which means he must rely on a wheelchair to navigate his world. Thomas has big dreams. He is attending Lansing Community College and someday would like to be a “stand-up” comedian – minus the stand-up part which is physically impossible.
Thomas’ needs from a care provider are very narrowly drawn. His self-determination is clear as are his goals, and his conviction to accomplish them. For example, even though his care-provider could drive him to and from school, Thomas prefers to take public transportation. Throughout his daily routine there are some speed-bumps he can’t get over without some help. Here is a list of duties Sieta carries out to assist Thomas:
- Sit with Thomas and catch up on the week or watch ESPN while waiting for the bus
- Travel with Thomas on the bus, driver operates the lift which gets Thomas on the bus
- Open the doors at the entrance of the Gannon building and the classroom
- Move the chair away from the desk so Thomas can fit in with his wheelchair
- Sit next to Thomas during class and assist with reading or writing as needed during the presentation
- After class wait in cafeteria for bus to arrive, help with doors
- Back at home review class material or study, offer assistance if needed
To outside observers Sieta and Thomas would appear to be friends on a similar path. However, the small services Sieta provides make a huge difference in his school life. Being able to get to class on time, having a little help with physical obstacles, and then having the help to open a book to the right place during a lecture, or make notes for later are an enormous help. Sieta appreciates the fact that Thomas participates in class and is a contributing member in group projects for class credit.
These services, although not the normal supports you would expect, are critically important to Thomas for him to fully participate in class, which gets him closer to his life goals.