So I brought Xan home from camp early yesterday. He was banging his head and acting like he felt bad, and I felt kinda cruddy, so I figured he might he getting something like I might be getting something. It wasn't a smooth day when I got him home, either. He whipsawed from happy to angry to whiny to complainly - puberty in 15/16 time. I guessed he was more tired than anything, and we tried to get to him sleep early.
Didn't work AND he woke up at midnight after maybe two hours sleep. So I got up too, and stayed with him in the living room. After two more hours, he was sorta drowsy, so we tried sleep again. That lasted an hour, and then the whining and complaining came up again. It was a long night. I saw the sun up and wasn't to doggone pleased about that.
When Tracy got up, she asked what kind of night we had. I listed the litany of complaints, and then added in desperate optimism, "But at least I got to catch up on some of my magazine reading!"
That's a familiar thing to us - we search for infinitesimal silver linings in clouds so big they would cover Jupiter. I do it to remind me that no matter how bad it seems to be, we have a lot of good things. Yes, Xan is autistic, but by all accounts and opinions of his teachers, therapists and doctors, he's a genius. (And of course we think so too, but that's kinda expected, isn't it?) True, he doesn't talk much, but he's smart enough to get his points enough and we can sorta kinda figure out some of his signs, so at least it's not a complete mystery. He does have issues with things like echoes, but he can function outside the house, so we don't have to schedule everything second by second.
Of course, it may also be whistling past the graveyard, because the simple fact is any autistic person has a hard time of it. In my last post I mentioned the policeman stopping to talk to me - what if he had separated us on suspicion of kidnapping? What would have happened? What if I'm in public with him and something happens - he wouldn't know to go get help or go to safety. That's one of the reasons I started taking Tae Kwon Do, so I could defend myself and him if I had to.
More general things affecting families in general people may not know - many doctors and dentists won't see autistic kids. We met some people who had to drive to Birmingham to get their kids checkups. (By the way, in Anniston, we've used Dr. Cabellero and Dr. Norby for doctor and dentist, respectively, and they have been wonderful in working with us. In fact, they have often helped me over the phone when Xan was acting sick, giving me things to try before I had to take him in to one of them, because that can be a struggle.) How do you get childcare? It's a challenge for the parents, how can you expect your average babysitter to handle it? We're lucky and careful enough that I stay at home with him - many families can't. How do you handle a meltdown in public? As you've seen by my adventures, it can look very bad. And these are just the current problems - the future is a whole other set.
But I bet most families would choose to see the positives, listing what their child can do and how they're lucky in many ways. It could be worse. We probably know people who have it worse and still manage to find those tiny silver linings in their storm clouds. It helps.
But still. It's often nothing more than desperate optimism.