The Transition Checklist for Change

Quoting Gilbert and Sullivan, "I've got a little list. I've got a little list." (Works better if you sing it or at least hum along.)  

Check marks this past couple of weeks decorated the following transition to-do items:

• Met with Easter Seals Crossroads assistive tech department for an evaluation to assess fine motor skills and determine what software and hardware could be helpful for college classes requiring writing; for executive function support; and, possibly, for on-the-job supports. Awaiting their recommendations. (Paying out of pocket.)

• Met with new therapist to help son Fickle Fan deal with rigid, restrictive thinking;despair over lack of friends; frustration and extreme irritability and outrage; and obsessive thinking leading to anxiety. (Paid for through husband's health insurance.)

• Met with psychiatrist. See above. (Paid for through husband's health insurance.)

• Increased dosage of anti-anxiety med, resulting in much more relaxed boy and parents. (Paid for through husband's health insurance.)

• Daughter Dearest also met with her therapist. Definitely making progress. Yea! (Paid for through husband's health insurance.)

• Encouraged DD to seek out volunteer opportunities. She's working on it. Still need to follow up.

• Took FF to mock interview session. Kinda like speed dating--several local companies send human resource reps to spend 5-10 minutes talking with potential applicants so they can get some practice interviewing. (VR/employment provider support.)

• Took FF to his first actual interview, where he was again assisted by his employment consultant. (VR/employment provider support.)

• For the first time, 21-year-old DD went out to the bars with her friend and friends of friends. Worried but grateful parents waited up till 2:45 a.m. Thank you to the the tech engineers who invented texting for the ability to send and receive unobtrusive text assurances. We may be among the very few parents, btw, who are HAPPY to see their daughter go out bar hopping--social activity in a typical peer setting, yes! Also helps that one of the silver linings of the combo OCD and Asperger's is that she has no interest in alcohol, so that part we don't need to worry about. Like the parents of any other young adult daughter, though, we will continue to worry about the behavior of any inebriated idiots she may come into  contact with during these occasional outings. 

• Participated in bus training with FF and the local transit authority. Met with trainer, discussed shoulds and should nots of riding the buses, figured out how to read the system map and schedules. Then practiced riding the bus nearest our house, which, amazingly, runs right up to the door of the business he interviewed with! (No charge for training--a regular service of the transit system!!)

• Met with academic advisor at Ivy Tech. Though FF still has a good grade in his one class, the next class he takes should be a writing class. Big problemo given his dysgraphia. We're hoping that Crossroads training (see above) will help him with that. 

• DD also met with her academic advisor and signed up for two spring courses. After successful completion of those, she'll have enough credits to transfer to IU. (Neither FF or DD qualifies for financial aid.)

• DD met with her biology tutor. Going well. Still has an A. (Out-of-pocket.)

• FF went out with a 19-year-old son of a friend. We pay him out-of-pocket to take FF out to dinner, to the movies or wherever. 

• Covered more territory with FF in the Indiana BMV's Rules of the Road booklet. Wants to take the written test and see if he can take drivers training--though he knows he may not be able to drive and that Crossroads would probably need to do the training and eventually assess his readiness to drive. (That would also be out-of-pocket, I'm sure.)

All this took place in the last two weeks. Transition takes a pretty big investment of time (and, in our case, money.)

FF's biggest complaint in the past couple of months? Change is not happening fast enough. Hmmm. Really!??

Top Five Things My Son with High Functioning Autism Needs to Succeed in College

Before you read this post, please be aware that I do understand the differences between entitlement to services and supports in k-12 education for students with disabilities vs. eligibility for accommodations in college.  (For those of you who are parents of younger children or who don't dwell in our world on regular basis, here are the basics on that.) Basically, students in k-12--by law--are accorded a number of supports and services that help make school more accessible for them. In college, not so much. Postsecondary education requires that students be able to meet the requirements all other students must meet and that they advocate for themselves for accommodations (like extra time on tests or the use of assistive technology in the classroom that could help with essays or notetaking). 

Trouble is, "advocating for themselves" is one of the core challenges that many, if not most, students with autism (and their families) struggle with on a daily basis. Comes with the territory. So even if they've already passed the entrance exams, have a good grade point, and are capable of understanding college-level material, if they can't walk into the office of disability services and ask for the specific services that would help them, they're at a distinct disadvantage. 

In order for him to be successful in college, though, our son FF needs more than simple accommodations. And he's not alone. That "one-in-88" diagnosis so many of us in the autism community are now shouting from whatever soapbox we can stand on, also means that there are a number of students now graduating from our nation's high schools who walk out the door their senior year with a diploma and who still have Asperger's or high functioning autism. Surprise! They weren't cured. (Yes, I'm joking.) 

Trouble is, we have a little perfect storm brewing on the horizon: increasing numbers of students with autism entering college--primarily community colleges--and faculty, staff and administrators, including those in offices of disability services, who are woefully unprepared for these students. I suspect many of those professionals don't necessarily feel the need to be prepared. After all, the onus is now on the student; it's the student's responsibility to acclimate to college life, perform well academically, and practice self-determination skills. While that's true in part, I think it's tremendously short-sighted and sets these students (and colleges) up for frustration and failure. It's a big loss, since so many of these students have so much to contribute. 

It's true, though, that just as in the neurotypical world, not all students with autism are savants and geniuses. Many of them, FF included, fall into that capable-but-not-excelling, middle-of-the-road category (at least right now). You can debate whether or not he deserves to be in college; he and thousands of other Indiana community college freshman are in the same boat, floating on a sea of okay grades and positive end-of-course assessment scores, but for a variety of reasons, still in the community college harbor and not out on the state college or other 4-year college ocean. The point is that he recognizes college can give him opportunities--better jobs and a possible career, certainly, but more importantly to him right now, a chance to be with "regular" kids his age. College, more than anything, will allow him to continue to be in the real world with his peers, at least for awhile longer. Look at that sans the autism diagnosis and isn't that really what community college is all about?  

So here's my top five list of what FF needs to be successful in college:

1. Awareness and Encouragement. Staff members who will welcome him, say hi in the hallways, recruit him into a club, ask for his input or help, laugh with him, etc. People who actually want him there and appreciate his interest in economics or his ability to tell you the Academy Award winners and nominees for 2007. His anxieties are pretty high and he feels like he doesn't fit in anywhere. If a staff member on campus can build a rapport with him, it'll help a great deal. Training for key staff in the characteristics of high functioning autism and Asperger's as well as effective supports would be extremely appreciated. 

2. Peer mentoring. Students who are willing to take a student with disabilities on a campus tour, have lunch, meet after classes to hang out, go to a movie, attend a meeting with a professor for moral support, send occasional "how's-it-going?" emails, etc. A friendly familiar face in the hallway can be so crucial, but in community colleges that are most often commuter schools, students come and go. They don't always stick around to socialize. It would go a long way if student retention and/or disability student offices could actively recruit students--males as well as females, please!--to help students with disabilities fit in to campus life. 

3. Tutoring. Most colleges have tutoring offices. In our case, however, it's a drop-in tutoring center. We need tutors who understand the executive function and fine motor challenges of students with autism, who often need help keeping track of due dates, assignments, meetings and who struggle mightily with any kind of writing. Ongoing tutor relationships are usually better in that situation--not just whoever's on duty in the center that day. Screening and recruiting good tutors is a real challenge for families. Recommendations from the disability student office would be very helpful. 

4.  Transportation. Very few students with autism drive. I've been taking him to classes these first few weeks, but it's not an ideal situation. My work schedule is disrupted and he'd be much happier if he were going with a peer instead of (disgusted sigh!) a parent. I so appreciate that our local community college offers free bus passes for students. But in our case, campus is across town, two bus rides away. I'm not sure he can actually navigate that, but in any case, FF will need bus training and/or someone to drive him back and forth. Again, assistance from the disability student office would be very helpful. 

5. Assistive technology--in the classroom and at home. FF has a laptop, an iPod and a tablet (though not an iPad). What he doesn't have is training on how to use those things to his advantage, particularly in college. He needs an assistive tech evaluation, recommendations on apps and software that will best support him, and training on how to use those things. And NOT training from parents who are hopelessly, notoriously uncool. For the sake of peace on the planet, this kind of assistance needs to come from a trained third party.  The folks staffing the office of disability services also need to be aware of what works and what campus, local and state resources are available for students. And just FYI, when you're handing a student a stack of lined carbonless paper for notetaking, I would suggest you need a tech update.

For now, I'm going to side-step the question of who should pay for these services. (Encouragement, btw, isn't expensive.) I'd just like the services to be available to students with disabilities and their families making the leap from high school to college. As it is now, families are scrambling to cobble together their own supports. Yes, it's expensive, but it's also time consuming. In too many cases (and I'd like to see some real stats here) I'm guessing there are a number of adolescents with autism at home on the couch watching reruns of SpongeBob or bagging groceries at their local Kroger who could benefit from a college experience.

And, obviously, the list above isn't one-size-fits-all. It would be nice if transition teams could put together a list of needed supports and services and help families learn how to access them BEFORE their student walks into their first college course. A closer relationship between high school guidance counselors who staff those Transition IEP teams and the director of the office of disability services at the local community college could also pave the path from door to door. I'm sure they could learn from each other.

Families out there who've been down this road: How did you make it work?  Or, if your student wasn't successful in community college, why? What would have helped him or her?  Are there other things that should be added to the list above? I'd love to see Indiana start an online Ivy Tech "user group" for families of students with autism and other disabilities, so that families can learn from each other. Is there such a thing? 

Picking a Single Transition Path

Remember when I recommended the combo approach to transition?  In a previous post (toward the end of this one, if you need to refresh your memory) I noted that we tend to choose multiple paths in life--school, work, volunteering, hobbies, etc.--and I suggested that our children with special needs should have that same choice. Well, easier said than done. 


At our final Transition IEP case conference, I was introduced to a new participant in the process: Reality. Our Indiana Vocational Rehabilitation counselor invited him. He's kind of a downer, actually, but she sent him home with us and I suspect he's here to stay.

It always amazes me how clueless I still am about how transition really works. This despite the fact that I try to read the research, I attend conferences when I can, and I work in an office with transition experts. But I'm still in the dark. For the past two years, I've had a very hard time trying to envision what our son Fickle Fan's life will be like post high school, what supports will be available to him, who will provide them, and what he'll actually be doing with his time all day. FF graduated last week, and I still don't have answers to most of those questions. 


I do know now, though, that FF will need to pick a VR path. A single, either-or path. Employment or postsecondary education. VR will support him in one of those, but not both. I was hoping that FF could take a couple of classes at Ivy Tech and have a part-time job, supported in both by a local disability service provider. That way, FF continues to learn and get exposure to new fields while he also gets needed job experience, where he'll learn job skills and all of the things that come with that, like money management, social awareness, time management, etc. Both avenues accompany opportunities that could lead to permanent employment. And, yes, I know that we'd be beating the odds if that were to happen. 


VR, however, can only put its financial eggs in one basket at a time. FF CAN decide to pursue an associate's degree at Ivy Tech and see how that goes. Then, after a year or so, if that's not working out, he can go back to VR and ask for employment support. At that point VR would then pull the lever and switch the track over to employment services. So, as I understand it, FF isn't completely out of luck if he chooses a path that doesn't immediately work for him. He could reorient himself and try again.


But I'm loathe to limit his options when he's just 18 and still stretching and opening up to life's possibilities. And, given his high-functioning autism, I'm not sure the single focus approach is a good one. Many, many neurotypical teens hold a part-time job while taking classes at a community college. I think that makes sense for FF too. 


So is that our only option? No. FF could choose to attend Ivy Tech with VR support, and he could get a part-time job, but he'd be on his own, without help finding a job, without a job coach, and on the front lines in potentially stressful situations without an advocate or with co-workers who may not understand FF's particular version of autism. It's a little scary. 


We could also take the other route. FF chooses employment with VR support and takes a class or two at Ivy Tech, but again, without support.  We would need to recruit, screen and hire tutors and probably a notetaker/scribe, and we'd need to provide him with transportation. The Ivy Tech in our area provides very little support for students with disabilities. The office of disability services will provide letters that the student can then take to professors to ask for accommodations, but, as in many other universities, the student is expected to advocate for themselves on campus and in the classroom. Self-advocacy is one of those skills that the majority of students on the spectrum lack. Nothing makes my children cringe like the thought of asking a stranger for something they need.  So having him take classes without any support seems like setting him up for failure.  


We're hoping to put a plan in place with VR in the next week or so that would also get him some sort of support for the summer. I'll keep you posted. Meanwhile, Reality says he wants to move in, rent free, and begin calling the shots. Demanding little bugger! Sigh.