So Matthew transitioned to group home living last week. Despite the official change in his address he still spends a lot of time at home. He was home for a few hours last night between his day program and choir activities. Every thursday he spends the evening at home hosting a music therapy group and hanging out with family. And as part of our transitional arrangement with the group home, Matthew will spend every other weekend at home – from thursday evening to monday morning.
During these “home” weekends I have organized a skeleton crew of support including night nursing and morning support on saturday and sunday. In particular this skeleton staff ensures I still sleep at night, and builds in time for me to continue with my Saturday morning breakfast date tradition with my husband. However from late morning to about 7pm on Saturday and Sunday time with Matthew is specifically reserved as family time, or “mom and Matthew” time.
In recent years, despite having a fair bit of in-home support, I still provided a fair bit of Matthew’s care. I covered missed PSW and nursing shifts. I provided care whenever Matthew was home sick, in the hospital, or was “grounded” because of equipment or van issues. I attended all organizational meetings and health professional appointments. I spent hours troubleshooting equipment and medical issues. In short, I did a lot of the “work” of Matthew’s care, but often missed out on the fun stuff. Our evening staff would take Matthew to his plethora of activities which included choir, colour guard, swimming, music therapy, and OHL hockey games. On weekends nurses would spend hours in the community taking Matthew shopping, attending community events, and viewing the latest (appropriate!) movie. I rarely participated in these activities because these windows of time were my respite time.
So the nice thing about our new arrangement is that I have a balance of time when Matthew’s care is totally the responsibility of others, but there are also windows of time specifically designated as “family” and “mom” time. These “Mom and Matthew” times have been intentionally structured to allow me to enjoy some of the fun outings with Matthew. In the next few weeks I am looking forward to taking Matthew to see My Little Pony -The Movie (well, looking forward to MLP might be a bit of a stretch, but you get the gist), as well as taking Matthew to an OHL Rangers game. Over the next few months we’ll spend Saturday afternoons visiting the butterfly garden, doing some Christmas shopping, attending Christmas parades, and exploring all the wheelchair accessible recreational opportunities KW and area might offer. I am hoping from time to time Matthew’s brothers might join in as well.
While the idea of Matthew living elsewhere still feels very uncomfortable, I am aware that there is much about this living arrangement that might better nurture my relationship with my son and foster family time. A big part of this new arrangement is that it not only provides time for me to enjoy Matthew, but also ensures that I have the energy to do so by sharing the demanding aspects of his care with others. Reflecting on this transition I am aware that group home living might ironically allow me to be less Matthew’s nurse and caregiver, and more Matthew’s mother. And weirdly enough, that by allowing my son to live elsewhere, we might have richer family times. Something I didn’t think would happen with his departure. And I think it is for this reason that I am not, at least not at this moment, devastated by this transition, but hopeful and optimistic.