“Many things in life, at most times, are filled with both uncertainties and possibilities.” – Nigel, age 18
“Life is a holding pattern.” – Tanya, age 98
The phrase “back to the drawing board” supposedly originated from a cartoon featured in the New Yorker in 1941. The cartoon showed various military men and ground crew racing toward a crashed plane, and a designer, with a roll of plans under his arm, walking away saying, “Well, back to the old drawing board.” And as I found myself moving Nigel back to my apartment, with his big captain’s bed and many boxes of belongings (he would be a hoarder if left to his own devices), just two months after his much-prepared-for move-out, I couldn’t help but think of it.
With the situation I described in my last post about Nigel’s transition, things rapidly deteriorated. He had started pulling out his hair and eating it again, and refused to eat meals with the rest of the household, becoming extremely reactive whenever the other client walked into the room and thereby disturbing the entire household, although every effort was made to accommodate him (Nigel). This would occur even when the other client hadn’t said anything or even looked at him. Finally the house manager called me at work one day (he’s not even in school anymore and I still dread, and receive, those calls) and succinctly stated, “Nigel’s not functioning here. He needs to be moved.”
And the curse word that I reserve for situations such as this almost escaped my lips, but in an effort to maintain diplomacy, I said that I would contact his case manager right away. She then proceeded to describe Nigel’s reactive behavior, stating, “It’s obvious he hates the other client.” And diplomacy all but flew out the window as I said, “Whoa! Has Nigel actually used the word ‘hate’?” “Well, no.” “Then let’s not make assumptions about how a person who has difficulty expressing himself thinks or feels!!”
And it dawned on me that no matter how old he is or where he lives, I will always have to fight for him.
His very new (to him) case manager, who has more experience with older adults but is happy and willing to learn as she goes with Nigel, emailed me that she contacted four different agencies, and we had a meeting set up with one of them within days. However, it turns out that these agencies provide services other than housing. They do daily check-ins with those who have apartments, and they provide transportation and job coaching, etc., which will be great in a little while. But until his HUD goes into effect (we are on month two of a four-year waiting list), the only other housing option for him (besides being on a pad on my living room floor, since my younger son moved into the second bedroom two months ago), would be placement in another supported living home.
Why that won’t work:
a) Several of those homes in our area have babies in them (he can’t handle the crying)
b) What happened at this last house could easily happen in another home, including his reactive behaviors
c) If there are no openings in our area, he will be sent anywhere within the state that they have an opening, as far as 300 miles away
d) He wants to remain in this area, near family and friends, so he can have support while he works on his GED
And something else dawned on me, equally as significant: It’s not about the other client.
I think Nigel realized (and eventually I did too) that he doesn’t belong there. Not just that particular home, but any of them. He’s not ready for his own apartment yet, but someday – with daily check-ins, transportation, and other services that these disability-related agencies provide – he will be. And until then, I can’t stand by, able-bodied, and let him be miserable. Yes, I’m exhausted after 15 years of single parenting. Yes, I wanted more than anything to spend some one-on-one time, finally, with Aidan before he graduates from high school. Yes, I wanted Nigel to feel like he could be semi-independent.
But the supported living home didn’t work. And I know there might be others that might work for him. Unfortunately with the limited resources in our area, we can’t be choosy. Often there’s only one choice, one opening. If there’s something about it that won’t work for him, the only alternative is to stay in my living room. And of course no one here is enjoying that.
Instead of “back to the drawing board,” for me it’s more like “back to the diving board.” As I fill out applications for 3-bedroom apartments and get the money together for the deposit, bracing myself for another move, I feel like I’m diving into cold water, and I’m dreading it. Things were supposed to go much differently than this. But they didn’t, and now I’m right back in the situation I was trying to change. And as I dive off that board, back into it, I’ll try to keep in mind Nigel’s positive words from over three years ago, when we experienced a similar life-changing decision that didn’t work out in our favor: “Maybe some good will come of it.”
I’m sure it will. We just have to get there.