It creeps up on you and seeps into your fiber, as you rush about to therapies, meetings, schools, jobs. You hardly have time for the phone calls you need to make for doctors, appointments, counselors, more therapists, more schools, more meetings, there is little time for calling a friend.
When Joey was little, I worried about meltdowns, overload, and unexpected behavior. We went out, anyway, because I could always bring my Mary Poppins unending bag with us, prepare, and hey, I could always pick him up and take him to the car. I'll never forget the first time we used our handicap parking placard- we had been nervous about getting it- and discovered that it made our lives safer and easier. We could at least expose him to a variety of places and activities, even if we had to leave suddenly and quickly.
He's bigger now. He lasts longer, but when he's done, he's done. He's too big to pick up and save. If he melts down on the boardwalk, I'm in trouble, he's in trouble. When they are little, people shrug and smile and frown and whatever. When they are big, they can be perceived as a threat. I have to pick up on the warning signs before he gets to the screaming stage, or it can be dangerous for everyone. That means I have to pay even more attention than before. I can't make a mistake.
This means less going out- it takes a lot more planning to go, a lot more energy. Fewer people are tolerant, and far fewer accepting and helpful. Less going out means seeing less people. Going out with fewer friends. Less and less playdates. And when you do go out, less conversation. When you talk less, fewer people want to hang out with you and your family.
With special needs parenting, you find yourself more often in crisis mode. All those phone calls aren't being made for fun, you know. Hitting puberty means more danger of depression, anxiety, frustration, angst. Add the anxiety, depression, and frustration of autism on top of that, and you have emotional nitro glycerin. You work to keep your kid safe, engaged, moving forward; this can take an enormous amount of energy with a non-disabled teenager. As we run about trying to find a new school for Joey, the anxiety for his future mounts, adding to the stew.
When in crisis mode, very often the checking on friends falls to the wayside. You want to be a good friend, and if they fall into crisis, you would totally be there. But right now, unless they are in crisis, your energy has to be focused on your own page-turning chapter. You might have a time for a quick check- you thank the stars for Facebook- but unless they can say "hi!" in about three minutes, you have to make do with the info you have. Yes, I've heard that you make time for what's important to you, but in crisis mode, your kid is what is important to you. His future. His life.
You might think you know where this is going, but I'm going to turn right here at Albuquerque, and give a shout out to my friend, Sue.
You see, here in the middle of crisis mode isolation, I get reminded that you make time for what's important, and that's a reminder that my phone isn't exactly ringing off the hook with people looking for me, or wondering where I am, or what the heck is going on. I put up Facebook posts, and assume everybody else must be in crisis mode, too, and that will have to do. Quite a few people are- when you are in the special needs community, you know a lot more families stuck in that same crisis mode you are.
But there is only one who has actually called, and regularly pokes me with a "you OK over there, woman?"
That would be Sue.
We were roommates in college. I have no clue how she survived that. I am the WORST ROOMMATE EVER, especially when you are clean, organized, get-it-done woman like Sue. Even more astonishing, she has stuck to me through thick, thin, stormy weather, and all the colors of the rainbow. Holy Hannah, the effort that woman has put into staying friends with me! She calls. She shows up in DC and makes sure I know, so I can get together and see her. Even in the face of months of unreturned poking and prodding and calling and everything, she sticks with me. If I called her tonight and said, help! You know what?
A shout out to good friends, through years and ages, and hoping she knows if she finds herself in crisis mode, that's why they invented cell phones... so you can call at any time, day or night. And they invented planes, too, in case I need to get there. I know she'd do the same for me... because she does.
Thank you, Sue.