Wednesday, June 15, 2016

All the Comforts of Home

Daughter Dearest opened her refrigerator to make herself some breakfast this week, only to discover a pan of chicken feet lying in wait on the bottom shelf. For someone with OCD and Aspergers, you can just imagine how that went. 

Actually, it went surprisingly well. 

As a new resident of one of the rapidly multiplying student apartment complexes in our area, DD is encountering more than just chicken feet. This summer she's exploring semi-independent living as a sublettee in a furnished 2-bedroom apartment. For a few months, we're (DD and parents too) are testing the living-away-from-home waters. 

Housing for young adults on the spectrum is, not at all surprisingly, an increasingly hot topic among families. While the number of adults on the spectrum who need safe, comfortable housing grows, the residential housing options are slim to none in many communities. Parents are cobbling together their own shared living arrangements or are scrambling to figure out how to find suitable housing and individualized supports for their sons and daughters so they can avoid group homes or larger institutional arrangements that would simply be torture to our children. 

Sure, they can continue to live at home. For awhile. DD would actually prefer that. We're the ones that gently nudged her out the door last month. FF, on the other hand, would like to get out of here as soon as we can make it happen. Unfortunately, that's apt to be later than sooner in his case. 

But there's always that nasty, niggling question in the mind of every parent of a child with special needs: What happens when we're no longer here to wash the laundry, make dinner, ensure the meds are taken, insist on an occasional shower, buy the size 16 shoes, drive them to class, schedule the tutors, listen to the heard-it-a-hundred-times-before discussion of what movies could earn Oscars, and pay the mortgage? (That's the longer version of "What happens when I die?")

It comes down to:
  • people in their lives willing to guide, encourage, and be there (whether paid or unpaid),
  • a residential model that fits, and
  • money.
For DD, who drives and is more independent, it's more about the model and the money. The supports will be important too, but, at the ripe old age of 25, one of the things DD increasingly recognizes is that she NEEDS certain types of supports. For FF, who doesn't think he needs anything or anyone, we'll need to carefully consider and construct a model that works for him and that incorporates both direct and behind-the-scenes supports so that he can function as independently as possible. 

Ironically, it seems the higher functioning you are, the more money becomes an issue. Son FF will likely need to receive Medicaid, which could help with the paid long-term supports, and Supplemental Security Income (SSI), which may help with housing. And an ABLE account will be a must. 

DD, however, is high functioning enough to hold a job and she may not need benefits for housing. So what WILL she be able to afford on her own?  That's the scary part. Also, she transitions to the Affordable Care Act next year, so we'll see how that goes for health care. Paid supports? Not sure how that will work either. And an ABLE account won't help if she's not on benefits. For now, we're footing the bill for the Summer Housing Experiment of 2016.

So far, we're just focusing on boosting her independent living skills. Writing the rent check on time (we gave her the funds to put in her account). Grocery shopping. Cooking (eew!). Keeping the bathroom clean. Getting herself up and out the door in the mornings. Knowing who to call (and making the call!) when the closet door comes off its hinges. 

I highly recommend joint meetings with a therapist to plan big transitions like these. The gentle nudging started there. DD is much more amenable to suggestions from her trusted therapist than she is from her parents. We talked about how it could work, the type of living situation we would look for, a part-time job search, summer classes, and how long the arrangement would last. 

After looking at apartment options all over town, DD responded to a college classified ad on her own, for discounted rent in a 2-bedroom apartment that would be vacant May 1. She and the sublettor met once and worked out the agreement. (Good for her!) The rental office took over from there. Since she's a sublettee, the complex would not clean the apartment, so we took on that job. BUT, since the complex rents the units by the room and not by the apartment (college rentals are big business--and a semi-shady one at that!), they have the right to place a roommate in the other empty room. That was a surprise. 

Move-in was gradual. We cleaned (yuck!) and loaded in some of her things. Then we left town for a 10-day vacation (more about that in a later post) and returned to move in the rest of her things only to find a woman cooking in the kitchen. Surprise! The apartment complex placed a roommate in the second room without notifying either one of them. 

Though her roommate seems nice enough, we were hoping DD could just chill out and acclimate to her new place. Not so much. She's doing okay, but I suspect her anxieties cause her to be on guard much of the time. I don't think she's able to completely relax. And I think she stays in her room when the roommate is there. The upside, I guess, is that it may force her to learn how to get along with another person in a shared space. (Separate bathrooms are a very good thing!)

The new apartment is just minutes from our house, so there's a lot of going back and forth, which we're okay with. Sometimes she just needs a break, and it's okay with me if she's coming here for dinner a few times a week. 

The part-time job? Working on it. So to speak. DD's submitted a couple of resumes, but it's slow going and she's becoming discouraged. She only wants a part-time job so WorkOne isn't an option. She doesn't receive financial aid (I wish!), so campus work study jobs are not available to her. But things are looking up. Tomorrow she has a phone interview with a big box retailer. (FF's phone interview with that same big box retailer was a learning experience for him!)

As you might have guessed, DD's new roommate is an international student, thus the poultry delicacies. And unlike DD, she knows her way around a kitchen. But that means lots of unfamiliar odors (a sensory issue) for DD, and cupboards that are stuffed with unusual wares. Very little room for DD's peanut butter and bread. Who knows? Maybe DD will learn Szechuan cooking during her short stay this summer.

The housing experiment ends August 1. Then what? I don't know. (What!? You thought I had all the answers?) Monthly rent in a college housing market is expensive. She'll move back here, and we'll reassess. But I'd like to figure out a longer term solution soon. If not, maybe we'll need to initiate the Summer Housing Experiment of 2017 next year. 


Want to learn more about available housing options in your area or want to explore innovative residential support ideas in other states?  I really like "The Journey to Community Housing with Supports: A Road Map for Individuals and Their Families in New Jersey," recently published by the Supported Housing Association of New Jersey.  And check out the Autism Housing Network, a website and project of the Madison House Autism Foundation.









Friday, April 15, 2016

Playing by the Rules: Self-Advocacy in College for Students on the Spectrum

You would think we would know how to play Adventures in Community College Land by now. Maybe not.

It's a tricky one, this game--a live action role-playing, Dungeons and Dragonish venture, seemingly without any rules. All the players--ever changing--are improvising. I feel for them (a little). They've had too little experience with a family like ours, with students like ours. But, one in 68, people! That means a fair number of those are going to end up on your doorsteps, Community Colleges! 

But, as much as I may empathize with their issues, I feel worse for my children. In the four years FF, now 22, has been at our local community college, there have been four different directors of disability services. That's a problem. We're fortunate in that the current director DOES understand the rules and has stepped up to the plate for FF. Several times. I wish she didn't need to do so. 

Case in point. This semester FF is taking two classes, an English class with fairly extensive (for him) reading and writing requirements. Six novels, two papers, weekly discussion posts, two oral presentations, essay exams, and attendance at out-of-class events. He's also taking a safety course, a more job-based course that's a pre-requisite for taking any other of the college's courses involving this particular career. It's an information-based two-credit course requiring two short research papers, in-class quizzes, and several multiple choice tests. 

Guess which one is giving him conniptions?  Yep, that what-should-have-been-easy-for-him, two-credit safety class. 

I've told you all before about his severe dysgraphia, a condition characterized by extremely poor fine motor skills and processing that impacts his writing. It's taken us years to help the game players understand what this means and to negotiate appropriate accommodations (not modifications) for him: extra time on tests, which are taken in the testing center; use of a calculator for math; and the use of Dragon dictation for papers and written essays tests. 

The first test in the safety course was 150 questions long and was adminstered, per usual, in the testing center where FF used a Scantron answer sheet. These aren't new to him. I think what was new was just the sheer length of the test. The instructor contacted me (he knows that FF has signed a FRPA release, and we've encouraged him to let us know if there are problems) about the fact that FF's test could not be scanned because his marks weren't contained in the itty bitty bubbles. 


Disability services director steps in. New accommodation needed. From now on, FF will circle his answers directly on the test itself and will not use the Scantron form. FF signs off on the the accommodation form, gives copy to instructor who also signs off. Armed with a bulleted list, FF then proceeds to testing center the following week (in person, mind you, because students needing accommodations can not make online reservations to take tests--although everyone else can. This involves yet another trip out to campus in the Mom Taxi) to set up an appointment to take the remaining five tests for the two-credit safety class. Testing center administrator informs FF (I'm waiting in the wings--this is his deal) that he will need a seat registration and will need to pay an additional $37 per test. I hear him say "What's a seat registration?" Five seconds later I get called in to help with another negotiation. 

Surely, that can't be right. Students with disabilities who need a non-Scantron testing accommodation will need to pay for that?? Yep. Once again the director of disability services steps back in and we all troop back up to the testing center to negotiate another arrangement. She works it out: FF will now circle the answers on the testing sheet; the director of disability services will transfer his answers to a Scantron form; the testing center administrator will proofread the transfer marks and will then submit the Scantron answer sheet. He will not need to pay for an additional "seat registration," whatever that is. 

But chutes and ladders continues. This week I get another email from the instructor. The next test is an association certification. We knew this. The association, however, has decided it cannot accept a Scantron accommodation of this type. Really?? He says they're working it out, but "they're in control" on this one. I say great; we'll wait to see what they say. But that's not what I'm thinking. You don't want to know what I'm thinking. I point out--very nicely so far--that there are indeed rules for this game. Then I quote chapter and verse from the U.S. Department of Justice's website on the American with Disabilities Act dealing with accommodations in testing. The part under the heading "What Are Testing Accommodations?" that lists as an acceptable accommodation: 
  • Scribes to transfer answers to Scantron bubble sheets or record dictated notes and essays;
Whaddaya know? There ARE rules to this game!

Meanwhile, the very nice director of disability services contacts me to say that they're awaiting a decision from the association, but that even if the accommodation is disallowed, the office of disability student services will pay for a seat registration. The point is, however, THEY SHOULDN'T HAVE TO DO THIS.


And there's a point two (of course there is). It's the self-advocacy issue. I don't want this to scare off those parents of high school students on the spectrum who, like FF, want to participate in postsecondary education. I just want them to be prepared for the negotiations, continued involvement, and attitude jousting they may need to be engaged in throughout their own Adventures in Community College Land. 

There are people who will tell you that if a student doesn't have the self-advocacy skills, they shouldn't be attending college. I think they're wrong. And I think it gives short shrift to those students who may have many strengths and talents even though self-advocacy may not be among them. We don't need to be sending these kids back to square one just as they're beginning to take their turn in the game.

I've read all the recommendations, lists, and charts that will tell you that postsecondary students need to be able to self advocate. I agree: that would be ideal. But it's not the reality for many of our 18-year-old higher (highish?) functioning high school graduates. Lack of appropriate self-advocacy skills can be, in fact, a part of their disability. This is, after all, a developmental disability, and that's one of the skills yet-to-be-developed in our young adults. 

Community colleges can be extremely helpful for students like FF. Moreover, higher functioning ASD students often fall in that dreaded gap (in some cases a chasm). They may be leaving school with a general diploma but not a higher level diploma (Hoosier parents, for more on the current rules of the Diploma Game, check out Indiana Diploma Decisions.) That means these students are not eligible for a university program, but because of that general diploma, they're also not eligible for most existing community transition programs. Community college may be their only opportunity for continued contact with same-age peers, for academic enrichment, and for job skills development that just might get them a job with more than four hours a week earning $7.25 an hour, or worse, subminimum wage in a sheltered workshop where they truly do not belong. And community colleges can give our students a few more years to learn those all-important advocacy skills. 

But it only works if community colleges understand and can apply principles of universal design in their classrrooms. If they abide by ADA law. If they work to welcome and include students with disabilities. If they do the research and learn how other postsecondary programs around the country are providing supports to their students. If they train and guide their instructors in the importance and use of those supports (meaning it's not optional, dangnabit!) And if they begin working with state VR programs and local disability service providers to help students with career development, short-term work exposure, internships, and part-time jobs. 

If we, as parents, as elected officials, as administrators, as a society, really expect these young adults of ours to leave a community college program with more than just a piece of paper, more than just a ticket back to Mom and Dad's couch and an all-day video game/YouTube watching/internet searching day, we need to go to back to college and play by the rules. 

[Update: The association sent an email via secure mail (requiring FF to create a new account and a new password) notifying him that he will be "allowed" to use his accommodations, but that if the forms are not sent in appropriately by the testing proctor, he will need to retake the test at his or the proctor's expense.]

Tuesday, March 1, 2016

Telemarketers in Transition

I confess. I screen the telemarketers. Given that son FF's phone skills are less than sparkling, and his tolerance for people asking him questions is low, at best, I stop the always-at-dinnner telemarketers in their tracks. Either I don't answer at all, or I gleefully stay on the line--silently--as they repeatedly, almost desperately ask, "Hello?...Hello?...Hellooo?" until, baffled, they give up and go away.

I suppose I should let FF answer when they ask for him by name. After all, dealing with telemarketers is an independent life skill. It might not be on the top of the Transition Checklist,* but it's a life skill, nonetheless.

Tonight, though, I answered just as I saw the "U.S. Marine Corp" i.d. flash across the screen. Blast, I thought in that split second. 

Me: Hello?
Mr. Recruiter: Hi. May I speak to FF please?
Me: May I tell him who's calling?
Mr. Recruiter: I'm from the U.S. Marine Corp and I just have a couple of questions for him.
Me: Okay. FF has autism. Do you still want to talk to him?
Mr. Recruiter: Uh...uh...sure.

Good answer, Mr. Recruiter! Way to be inclusive and non-discriminatory. But then, I cut him off.

Me: [laughing] Good for you, but actually, FF is headed out the door right now for a class. 
Mr. Recruiter: Okay, well, thanks anyway.

When FF turned 18, we did the right thing and filled out and submitted his selective service paperwork (that IS one of the items on the Transition Checklist*). As a result, recruiters know his name and his age. They may also know that he is a college student and that he's unemployed. I don't really know how much Big Brother is watching and how much background knowledge they have on prosprective recruits. They don't know his diagnosis, though--and shouldn't.

On reflection, Mr. Recruiter handled that phone call pretty well. Me? Not so much. A) I should have let FF answer. B) I should not have disclosed his disability. But cut me some slack; it was a telemarketer call, and we were headed out the door and in a hurry. 

I checked in with FF, though, a few minutes later and asked him what he would've said if he had answered the call. "Not interested," he said. He gets better marks for his answer than I do for mine. 

Transition is all about learning new skills. Next time I'll be better. I promise. 

The good news is FF got a call about a job! Just not the job for him. 


###

*If your male student between the ages of 18 and 25 still needs to register, find out more information or register online on the Selective Service website. Transition checklists can vary from state to state and may change as your child/student's post-school goals change. Google "transition toolkit" or "transition checklist for students with disabilities" for more info or to create your own. Here's an earlier post on our experiences with part of our checklist.

Friday, August 28, 2015

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?

apple and orangeMe: 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. 

Tuesday, January 20, 2015

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!

Sunday, January 4, 2015

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.




Wednesday, December 24, 2014

Some Passions Never Die, But I Really Wish This One Would




When I kick the bucket, I'll know instantly that I've gone to the wrong place if I hear the non-lilting falsetto strains of Pikachu assaulting me as I cross the threshold. I can't tell you how much I loathe that little yellow guy and his boy-controller, Ash. Not a Pokemon fan.  



Pikachu, Charizard and all their annoying anime friends have been with son Fickle Fan (and therefore with me) now for over 12 years. It started innocently enough with the television show. I'm not sure how he discovered it, but it quickly became an obsession. Pre-Game Boy, when he was six years old, he actually flew into a desperate rage one afternoon in speech therapy because speech occurred at the same time his beloved Pokemon were battling on TV. We were not allowed to tape it. Watching it at 7 p.m. was just not the same as watching at 4 p.m. How clueless could we be??  


Fortunately, we came to our senses and eventually gave in and got him a Game Boy and earplugs. That introduced him to the world of Pokemon Red, Pokemon Blue, Pokemon Gold, Pokemon Silver...and the rest of Pikachu's palette.  And initially it meant new crises, when FF would be "stuck" on a level, unable to progress or win battles. (And speaking of battles, have you been treated to the exciting background "music" and sound effects of a Pokemon-to-Pokemon death match? Please. That composer needs to roast in Pokemon hell with me!) At one point I actually went online to an all experts site with my "How do I advance from Level 5?" question. Some wonderful guy actually answered and patiently explained how to go back and collect whatever gizmo FF needed to be able to defeat whatever opponent was blocking his progress. 


Through the years we've learned that having a passion or obsession for something means carving out space, providing access, or finding solutions to obstacles. And of course, we've also learned that those same passions can be wonderful motivators and distractions and can provide hours of calm.  

Some adults with autism have even built passions into careers. I remember a Chicago Tribune article about a man who loved trains and maps. After memorizing the entire bus and el system and all of its stops and connections, he was hired by the transit authority to advise people on how best to get from point A to point B. And I love this video from the Arc of Indiana's "Pathways to Employment" series on Drew, a young man who never gave up on his love for animals. 

Sure, there are probably more destructive or more disgusting passions FF could've chosen to latch onto than Ash's anime army. I think Pokemon probably provides consistency combined with a "safe," mild challenge and a sense of self-satisfaction when he wins a battle or gets to a new level. I keep reminding myself of that whenever I think of the incredible amount of time wasted on button pushing his DS. 


Unfortunately, I don't think Pikachu is going to turn out to be a pathway to a lucrative profession. FF has had other passions through the years that showed career or job-possibility promise--reptiles and dinosaurs, filmmaking, theater, cooking, sports facts and stats, and everything you've ever wanted to know about U.S. presidents. But they've all gone by the wayside. His room is full of stacks of books on the presidents, lighting and camera equipment, theater programs, and cookbooks. (He finally made dinosaurs extinct.) 


The passion for Pokemon waned through the years but resurfaced again in high school. Ugh. Left to his own devices (which is all too often now that he only has one community college class and work has dwindled to four hours a week), FF will play Pokemon on his DS or old games on his Game Boy, search for Pokemon clips on YouTube, watch episodes on TV that he's figured out how to record with the DVR, or even research new Pokemon in a game guide he got for Christmas. (Okay, yes, I bought it; as much as I hate the little beasties, I can't deny him the thing that he loves.) 


Anyone need a Pokemon expert?  Anyone??  


"Pikachu, I choose you!" Gag me. 




Okay, for those of you who just need to be tortured, click on the links: "
Ash Meets Pikachu" and, oh help me!, there's a soundtrack!  
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