Over the past year (well more really), our family has discussed and made plans for what we'll do when our youngest daughter reaches 18. While others plan a second honeymoon, or maybe take a fabulous trip when the kids have all moved into adulthood, we could not. Our youngest child, Rachel, is profoundly autistic and severely mentally impaired. We've cared for her for every one of those 18 years and feel that it's OK now to make plans to place her in a group home. The trouble is, there aren't any group home spaces to be had. Places like that are filled solely through attrition and someone has to die for our daughter to secure a spot. We also want a place that is for young women only and only for those who have similar problems. We didn't want someone violent sharing her living space. Alternatives to a group home aren't very attractive. We wouldn't be able to live with ourselves if she were to be institutionalized. That isn't how we want her to be able to live her young adult life.
After much reflection, our plan is to turn our own home into Rachel's lifelong home. It'll also be home to 3 or 4 other young women who are in the same predicament. We wouldn't operate or staff the home, but it'll be where she lives until she dies.
I have very mixed feelings over this. As I write this, I am tearful. I can't believe it's been 18 years. It's been the hardest 18 years of my life. Her disabilities have ruled this roost for every minute, of every day, for 18 very long years (plus 8 months-but who's counting?). We've had community mental health services in our home for 10 of those years. It's been like a perpetual revolving door of social workers, therapists and caregivers. We have no privacy and nothing is sacred. The last social worker who had to evaluate her was the biggest blowhard I've ever had the misfortune to meet. Thankfully, I only had to do so once. He is not her primary social worker and the one who does come monthly to our home, is wonderful.
Next week, a slew of people from our county will be visiting to look the house over. I know I should be taking this opportunity to scrub every crevice clean. I should have the Dyson doing overtime. Oddly, I'm paralyzed by fear. I don't know if this is the right thing to do. What will I do with the time I usually give to her? Who will be my excuse for staying in at night(after night, after night)? What will my life be like if it isn't defined by her needs? I came in the house this evening thinking she must be home alone. She was asleep in her bed with only Duke to watch her. Her caregiver was gone for the night and I panicked. She wasn't alone, her brother was in another room. He just didn't have his car here. The point is, it's her and her needs I always think of first. I don't know what it'll be like to put myself, my other children or even my marriage first.
It seems every time we come to a major crossroads, I'm more and more apathetic. I became resigned to my lot in life a long, long time ago and feel an underlying ripple of fear with change. I know this would be good for all of us and maybe even her. She can't speak to tell me what she feels about this plan. In the past, she's always gone with the flow and adapted much better than I and deep down, I think she'd like it.
The problem with our plan is that if I hate this for her, it won't be so easy to take it all back. Our home won't be our home anymore. It'll be home to her and several other young women. Revoking this decision would have ramifications for them all. This is a big deal and you'd think the least I could do is get off my ass and scrub something. I just can't. Please pass the tissues. I feel the waterworks are about to begin in earnest.