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) 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.

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.]

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.