Since Matthew’s move to a group home last week I have spent a fair bit of time thinking about the notion of “being ready”.
The truth is, I was not ready for Matthew’s move to a living arrangement outside of our home. We were perfectly happy with Matthew at home. At this point of our journey raising Matthew we were coping well. We had excellent nursing supports and generous access to respite. I was still young enough, and healthy enough, to manage his complex and physically demanding care. We had all the necessary equipment and supplies. Matthew had been medically stable for over two years. Things were good. Indeed, the last two years were probably some of the most stable, least stressful, years of our journey with Matthew.
So why on earth would we we place Matthew in a local group home when we weren’t ready and things were going so well? Because I know, through experience and observation, that this “coping” can vanish in a moment leaving families struggling and in crisis. Personal illness or the illness of a family member, a sudden shift in nursing or personal care workers, policy changes, funding changes, staff resignations, job loss – all of these can compromise the ability to care for a complex care child at home and/or spiral a family into crisis. And I was worried that if I was in crisis I wouldn’t be able to make the best decisions about Matthew’s care. It was inevitable that I was going to have to let go someday, and I wanted to make sure, if I had the opportunity to do so, I could work through Matthew’s transition when I had the time, energy, and optimism, to do it well. This likely meant that I had to do so when a good opportunity presented itself, regardless of my readiness.
So why now? Because a very wise mother of a complex child once told me that the best time to transition your child, if you have the opportunity, is when it is developmentally appropriate to do so. In other words, at roughly the age and stage of life when other young adults are transitioning to new living arrangements. For us, we figured that would be somewhere between 18-22.
It often seems that parents of complex kids need a crisis – need to reach a place they simply CANNOT CARE – before they are often able to let go. To complicate this scenario even further, the Ontario long-term care and housing situation is such that families often need to be not only “in crisis”, but “in extreme crisis”, before placement might be realistically explored. Our situation, where we can intentionally and gradually transition Matthew from home to group home, is rare, and I assure you we are grateful. And even when families are in crisis it doesn’t mean that their loved one will be offered an ideal, or even appropriate, placement. I could write a dozen blog posts about the housing crisis for young adults with complex disabilities in Ontario, and not even hit the tip of the iceberg.
Which is why we placed Matthew at a time when, honestly, it feels premature for me to let go, but is age appropriate for Matthew to move.
I was so not ready for this move. Truth be told, without a crisis I would likely never be truly ready. So rationally I knew the fact that I wasn’t ready was irrelevant. I knew I wanted to have the time and energy to invest in making Matthew’s transition as smooth and as healthy as possible, which meant that I had to do it when I wasn’t ready to let him go (ergo I wasn’t in crisis).
And really, what does being ready look like? When my eldest left for university three years ago I wasn’t ready to let him go. After all he was only 17, and had yet to develop all sorts of independent living skills in my maternal opinion. But HE was ready to go and was prepared to develop necessary life skills as he needed along the way. When any of us left home for university, college, or jobs, were any of us truly ready for the transition, or did we figure it out as we went along while our nervous parents watched in the wings? We are often asked to let go before we are ready. Indeed, it seems a fundamental part of parenting.
I often remind myself that Matthew is almost 19, and were he able-bodied I would have likely already moved him into a university dorm, whether I was ready to let him go or not. And similar to the situation with his older brother, whether I am ready to let him go or not, it is my job to let him go and to then figure out what this life of parenting adult children, regardless of ability, looks like.