You know how you'll be swimming along (metaphorically), going, well geez, things are going pretty well, knock on wood? And then, bamm! You say those words, even invoking superstitious protections, and you're hit with anecdotal evidence that you spoke too soon?
I'm just saying, it seemingly never fails to happen. Of course, that might be more to do with the reality that life is constantly on an up and down roller coaster ride of events and when we're in a high or in a low, it can be hard to see that it's been something else and will be again.
We're doing well here, but we've had the regular hiccups that you'd think I'd never forget are inevitable. We're working hard at expanding comfort zones and getting out in the community several times a week (a change from our preferences for staying home and hyperfocusing on our geek/garden obsessions). It's been mostly great, but we've had some bumps.
Bobby is continuing to grow and do well at his volunteering, so well that this next week will be his last time to attend the day center for the disabled; he's going to transition to volunteering five days a week as we work to build his skills and his ability to sustain 40 hours a week doing meaningful labor in the hopes and plans that this will, after a year or two, allow him to transition to a regular paying job.
It's scary and exciting at the same time, from my perspective, to let go of the center and to move him to five-days-a-week volunteering and ultimately to 40 hours a week volunteering. It's hard to tell how Bobby feels about it, although he seems to move towards this goal with less trepidation than I have. Maybe in some way, this change is not as difficult for him as it is for me? And to even state that it's difficult for me is to overstate it; it's electrifying, exciting, and, yes, scary, but that doesn't mean difficult, not really: it's inevitable. It is uncharted waters, though, and comes with risks, but with the chance for him to continue working towards independence. I want this for him and am thrilled that he's heading there. It's huge.
But there are hiccups. He maintains a focus at the places he volunteers and in our kitchen when he cooks that impresses me as it's new, but at the same time, when he is outside those duties and tasks requiring the attention to detail, he can be very unfocused. I don't think that is worse than it's been, but that in contrast with his improvements in functioning, it's all the more telling. The important thing to remember is that when we give our everything to rise above, to do more than comes easily, that it comes with tradeoffs, that there are prices to be paid. Much better to remember that he cannot sustain continual focus than to expect that he have consistency across all domains. It's all about baby steps and realistic expectations and assumptions.
And then there's this: we've had very few instances of aggression, but the other day Rick heard Bobby on the phone being hostile towards a friend (who had texted him, calling him a name, out of the blue); Bobby lit off like a firecracker, and surprised us with just how mad he was and how difficult it was to calm him down. So we face the hiccup of whether this is a new problem, if this is a friendship we'll have to limit (this friend's been texting and calling him dozens of times a day despite Bobby asking him to only do so at certain times). Hiccups or something more? Time will tell. Not overreacting on our parts and allowing Bobby as much autonomy as possible is, I think, key. He's got to learn how to navigate this kind of thing in the real world. Finding the balance between protection and instruction is not something that gets easier. In the short term, telling the friend that Bobby's grounded for two weeks and not allowed to visit or accept texts gives Bobby the break he needs from what he views (rightfully so) as overly demanding and intrusive contact on the part of this friend.
Onto other bumps and hiccups. The girls went to a fun day at a local church (where they met up with their friends). It's a large, well organized, friendly church, but walking away leaving them in a sea of strangers was hard for all three of us. We were nervous. I think the day, on balance, went very well for them. Their friends ended up getting into the same classrooms with them, which helped, but Lily, who is almost always grinning and happy (or the opposite) was unusually pensive when I got her. And both girls, when I asked what they'd learned that day, immediately offered, in tandem, that the punishment for sin is death, with Lily offering that it's a sin to disobey parents. I'm absolutely certain that this was not the takeaway message the church was trying to offer, and it took some prying to get the girls to admit that Jesus had been mentioned, but what they took away from the lessons was about sin, punishment, and death. Hyperliteral kids and Old Testament teachings are perhaps not a good mix. I suspect the pensiveness was Lily trying to work out what that all meant, and she managed to right herself after an extended talk with her grandma and me. But still. Hiccup. However, the bigger picture and takeaway should be that they entered a brand new place, teaming with hundreds and hundreds of kids, and they navigated it successfully with no special supports. Big deal, despite the hiccup. Plus, what a great way to ultimately learn that a hiccup does not have to mean a ruined day and that sometimes the message we take away was not the one intended.
Friday, I treated the three kids to lunch at Golden Corral, thinking, on the spot, that the buffet style eating, the busy atmosphere and the lunchtime crowds would be comfort zone-expanding at the least.
Rosie's got big-time issues with choice making and here we inundated her with countless choices. She chose on her own the lasagna. But that's pretty much all she chose. She didn't want anything else on her plate. She accepted the roll, though, and then was able to handle dessert choices. Yay, Rosie!
Lily, bless her heart, in taking her own plate back to our table so she could come back and help with Rosie's, managed to get hit by a service person with a bunch of trays, hurting her hand. She cried, but she accepted ice and the woman's sincere apologies. She recovered from that, managed to eat more than the rest of us and was back to smiling by the time we were done eating.
Bobby, well, he was a man on a mission, and helped himself to food with no assistance, no hesitation, and then helped his sisters get their desserts. And then helped finish eating them.
We had one other small hiccup when our service person, in cleaning up the table, managed to spill the glasses of ice left after we'd slurped our diet sodas down, all over the table and to varying degrees, us. Another lesson in how not to overreact for all of us. The girls immediately offered to her that this happened at home all the time. Hiccup escalating into major meltdowns averted.
Much of our parenting, whether we have special needs children or those with just the fair share of issues, is about teaching our children how to cope with hiccups, or hassles, as they're termed in psychology: those minor upsets that momentarily throw our day out of whack. It's our job to teach them that a zit doesn't mean the end of the world, or a bad hair day doesn't spell doom. And for our children with special needs, the demands are higher, as their hassles are rarely just zits or bad hair days. It's our job to arm our children with the tools to appraise those hassles as just that: momentary blips that do not have to ruin our day.
We've had our share of hassles and we've certainly had our share of major, life-altering events. Each of them is a learning opportunity and a chance for growth. Adaptive coping in the face of adversity is about weathering these events emotionally intact. We can't get through life unscathed, but we can make a conscious choice to learn from those events and grow. We can create our own self-fulfilling prophecies that we can handle it, that we are up to the challenges we face. The greatest gift we can give our kids is adaptive coping, but we can't offer them that gift if we don't have it ourselves.
Too many of our parents in our special needs communities need help, need information, need support that they too can cope adaptively, that they are up to the challenges, and that they can survive the hiccups and the bumps that life throws at us.
We need to do better as a community in offering the support, the tips, and the tools so that all families have the opportunity to weather the hassles and the upheavals and come out the other side intact.