Different Worlds

Both of my children perch precariously on the higher functioning end of the autism spectrum (often, of course, not-so-higher-functioning). And that's as close as they may ever get, because in reality they occupy completely different worlds.

On the way home from work this evening, I call the abode just to see if there's anything they need me to stop and get before dinner. 

Me: Hi FF. How are things? 

FF: Hi Mom. When's DD coming home?

Me: Um, I don't know. Isn't she there with you? Have you seen her at all today?

FF: Uh, I don't think so.

Me: You don't think so, but you don't know?

FF: I don't remember seeing her. Maybe she came down earlier. I don't know. 

Sigh. This isn't unusual. Some days the first time they interact with one another is when I call them both down for dinner.  

They occupy such different worlds it amazes me that they have the same parents, grew up in the same house, lived in the same town, and ate the same foods. Their dissimilarities, in fact, are why I was so surprised when DD was also diagnosed on the spectrum. 

FF is all about sports. DD can't tolerate them. DD is a voracious fantasy reader. IF son o'mine opens a book, it's more likely an action suspense novel. FF is into food, likes cooking shows and restaurants, makes his own simple concoctions in the kitchen. If I'm not there to make food for her, DD assembles the same peanut butter sandwich she's been eating for 23 years. Or she orders pizza online and has it delivered. DD loathes the cold. FF prefers it. 

FF is in many ways more social. If he could, he would spend most of his time hanging out with other guys, talking trash, the latest film releases, and trading crude humor references. He can't, of course, because he doesn't have any friends other than those we pay weekly. But that's beside the point. If he had the opportunity, the money, the transportation, and the bros, he'd be there.

DD has more chances to be more social and in some ways may be more socially capable (or maybe "acceptable" is a better word there). She drives a car and can actually get herself to places where there are people. But that happens rarely. In the past six months she went out four times--to dinner with a friend twice, lunch once, and to a dance once (yeah, I about fell over when that happened!). And that was a tremendous improvement for her. She spends the majority of her time in her room, alone. She has a Facebook account she hasn't been on in years. She lurks on mine, so she can read the funny or geeky posts. 

DD wants a science career that pays modestly, comes with good benefits, helps her save the planet, and allows her to immerse herself in a world of acceptable nerdiness. FF wants a job that pays a million dollars and lets him live in his own house, and go to movies whenever he wants. Other than that he really hasn't roughed in the career details. He just knows he does not want a job that "matches his interests," something I mentioned awhile back, here. 

Are there similarities? I'm literally sitting here having to think about that one. Neither likes talking on the phone. Both take terrible notes when answering the phone. Both have brown eyes. It's a short list. 

Remarkably, they do now talk to one another at the dinner table occasionally, usually about a movie they've both seen or chapters of the Percy & the Olympians books, which they've both read. For the most part, we've graduated from the door-slamming, can't-stand-you, how-are-you-my-sibling? years. For the most part. 

I think they now appreciate one another's interests and understand their differing challenges and how it affects moods and level of function in varying circumstances. I think they love one another in their own ways. 

But will they support one another when we're no longer around? I honestly don't know. And by "support" I mean both emotionally and with life's have-to-dos. Will she talk him through the tough times and disappointments? Will he help shovel her driveway in the winter? WIll they laugh with one another, remembering Mom's annual battle with the ants or Dad's outlandish dreams of a trek to the Hudson Bay? 

It's one of my biggest Mom Worries for the future. 

Have You Talked with Your Parents About When They Die?

Last semester FF was dutifully (not a word I often apply to him) doing his homework for his Intro to Sociology course at the local community college. And this question came up. Yes, that one up there in the title. Oh boy.

Sociology was an interesting but sometimes challenging course for him. In addition to examining the sociological perspectives on how we humans interact, oppress, manipulate, nurture, and mate with one another, for an assignment he had to observe a crowd of people and then break a social norm. (He walked around Kroger wearing a clown nose.) And, of course, write a 4-page paper about it. As you can imagine, it was just a thrill ride for a young person with autism whose only goal in life is to fit in. The final paper was a scintillating 6-page introspective look at a day-in-the-life-of FF.

A little side step here: Probably the very worst type of writing assignment you can give to my not-so-little non-writer is one that requires him to write about himself. There was many a time in elementary, middle, and high school when a well-intentioned teacher caught an earful of insolent, bellicose protest for handing FF the "Keep a Daily Journal" directive. I would imagine that to him it's like asking goldfish to not only jump out of his bowl but also to flip flop under the warm caresses of a blow drier set on high for a half hour or so. 

And yet he's making some progress. "The brain is a muscle," so says a meme that pops up now and then on the internet. I really do believe that the more he stretches and pokes and prods into the areas that are incredibly difficult for him, the more capable he becomes. He completes online modules independently. He checks his assignments and grades regularly.

Doesn't mean it's always easy. Doesn't mean he no longer experiences bumps in the road. He does. He still doesn't understand why it's important to be polite or tactful. He will tell you he's ready to live in an apartment, but he doesn't do laundry, clean anything, recharge his phone, or get himself from point A to point B. He can't articulate a life goal yet. He needs to be reminded to take his medicine (although he refills his med strips by himself). He has no friends. He does not communicate with anyone via phone or email other than his parents.

This is FF's version of high-functioning autism. 

That brings us to the Sociology 101 questions: "Have you ever discussed the issue of aging (your parents' aging) with your parents? Have you made decisions, together, on what do do in the future?"

Little does that Soc instructor know that these are the issues that pester and poke at every parent of a child with a developmental disability. 

His answer was, essentially, a little bit. They (the parental units) talk with each other a lot about it, but not as much with me. 

True. He knows that we plan for his future and for that of his sister. He knows that we have limited guardianship for him, though I really don't think he understands the full extent of what that means. We've told him that we have set up a special needs trust for him and though we haven't explained all the details, we've tried to let him know that we're saving for his future. He was thrilled when the ABLE Act passed, because he understands that it means he can now receive benefits (he's not on SSI or Medicaid) but still save money for himself. He won't need to promise to be poor for the rest of his life.

That's all good as far as it goes. But here's the problem: We haven't talked about or really dealt with the "what if" possibilities with FF or Daughter Dearest. Those range from the very drastic and most terrifying: We're both killed in some catastrophic accident next week, and the two of them are left to figure out life on their own. Who do they call first? What should they do? Could they stay here in our home with supports? Where would they find those supports? Should they move to another state to be closer to family? How would that work? 

And then there are the aging, getting sicker variations: One parent has increasing health challenges and the other dies of something unexpected. Or, both parents are failing fast--my husband has an existing heart problem; my family has a history of both heart disease and Alzheimers--and FF and DD need additional supports. Who do they call to advocate on their behalf if we're no longer able to do that for them? 

During our short conversation about the Sociology assignment, FF told me they'd watched a video in class about aging in America. Then he bluntly laid it on me that he would not be the person to care for me if I needed help or had to go into a nursing home. Uh, yep, I knew that. I really need to live to 120 with the vim and vigor of a 50-some-year-old and then say goodnight. 

That professor opened a can of worms with her question. Or rather, the can was already slightly open; she just cranked up the lid. 

We've already done the basic architecture--financial planning, guardianship and the special needs trust--we just need to put more detail into the blueprint. That will mean encouraging and even pushing them to practice independent living skills. It will mean painful discussions with them and with far away family.  And it will mean contingency instructions for DD and FF. We're nearing retirement age. 

The clock is ticking. Aaaaargh!

Talking the Talk

I've spent the holidays subjected to FF and my husband as they second guess the refs, coach from the couch, and discuss which quarterback has what stats and why. It's bowl season. The ridiculous number of corporate-sponsored, beyond boring, gridiron grind-ups around the country? So not my thing. But listening (from the relative safety of another room) to FF and the hubs do their thing, I have to say, I'm so impressed with FF's game insights and background knowledge.

The Husband: "Team Whatever is just getting slammed out there."

FF: "Yeah, but that's because they lost Quarterback Quizzical when he broke his collarbone last year. Plus, they haven't had solid coaching for years, so they can't build up a team. No one stays very long because they can't stand the athletic administrator."

Where does he get this stuff!??

For once, I know the answer to that question. Sort of. 

Way back when, there were a couple of disastrous attempts to get FF involved in team sports. I'll spare you the painful details. If you're the parent of a child with autism, you probably already know. At the time, FF lacked the social skills and the coordination. For soccer he lacked the interest. For baseball he lacked the ability, and inclusion was not the name of the game for the coach or FF's fellow players. I remember holding a very frustrated, angry, crying little boy in the car after the third and final embarrassing baseball practice. 

Many local parks and rec departments will now work to include kids with autism or other developmental disabilities in sports or other activities. (Call them and ask!) At the time, though, our parks and rec department wasn't one of them. The thought was that kids like FF should be in Special Olympics. Not what FF had in mind. To him, Special Olympics meant exclusion not inclusion. Yes, it would've given him an opportunity to participate in something, but it wasn't what the kids in his general ed classes were doing. Why couldn't he do what they were doing? 

To be fair, Special Olympics is a wonderful organization and they've come a long way. In some communities, they now have more inclusive sports activities, wherein kids with disabilities can participate in games with their peers. At the time, though, we were stuck. 

The solution? We went digital. In the third grade (overall, just a horrible year), we got FF the PC game Backyard Football, an animated game featuring toon versions of real-life football players that the operator could choose for various teams. With the color commentary of an incredibly corny announcer (complete with really bad puns that I'm sure FF didn't get until much later) the teams battled it out on the field. It taught him the lingo, the various positions, and the rules of the game. Backyard Football, was quickly followed by Backyard Hockey, Backyard Soccer (still not very interested), Backyard Basketball, and Backyard Baseball. 

And no, I am not paid to promote any of the Backyard Sports collection and am in no way connected with Humongous Entertainment or Tommo (I think they bought HE). If you have a little one who might be interested, I think they now make versions for various devices. Or if they're not making new ones, you may be able to purchase used games.

The good news is that armed with his newfound sports knowledge, FF could talk (at least a little bit) to other kids in his classes about local and national sports. The bad news is that didn't satisfy him. Once he understood the game, especially football, he wanted to play with his peers. 

It took a long time, but eventually we solved that too by having him workout with the football team his freshman year of high school. They got to know him and his quirky sense of humor and they had his back in the hallways. He got to know them and the coach. Pretty quickly he realized that he was more comfortable watching the game from up in the stands. I think it's because on the field, he couldn't get the same perspective. The coach, a wonderful guy, would have let FF at least stand with the rest of the team on the sidelines, but FF always declined. (Just as well; that concussion thing scares the heck out of me.)

Today, FF, now 20, likes researching teams and players online, in magazines, and in the local papers. He's graduated to Madden football on the Wii. He looks forward every year to picking the winners of the bowl games and setting up his March Madness brackets. He gets his exercise at the gym (we've talked about that a little bit here) not on the field. And he loves talking the talk. I wish he could do some active exercise (not necessarily competitive) with a small group of friends, but that's tough to arrange. Non-gym activity, groups, and "friends"--all tough. I'm still hopeful, though. 

About a month ago, we were waiting in line at Starbucks, and FF was telling me about movies coming out soon. Suddenly, he looked over my head and behind the counter, where one of the Starbucks employees was saying, "Hey, FF, how's it going?" FF smiled broadly and said, "Great, how're you doing?" The employee disappeared into the back and I looked at FF who said, "Oh, that's Duane. He was a lineman on the high school football team. Good guy." 

As much as they made an impact on him, I think FF made an impact on a number of those players as well. So outside, I smile at FF and say, nonchalantly, "Oh, okay. Great."  Inside, I'm melting.

On those days when I'm being treated to a barrage of factoids about the Team du Jour, I silently curse Backyard Football, but I try to remind myself that talking the talk is very, very important.