September – View from The Other Side: Lessons Learned the Hard Way
I know all of you are in the throes of a new school year, with all the excitement, craziness, and hassles that come with a whole new crop of students with disabilities (AND THEIR PARENTS!) on campus. I find myself feeling a bit nostalgic. Many have seen my “Open Letter to Parents of a Student With A Disability.” It was written in 2009, as my daughter graduated from high school and I, along with thousands of other parents of kids with disabilities, faced the prospect of sending her off to college in the Fall. I tried to provide a gentle push to parents (with a shove thrown in here and there) as to how to approach the transition from high school to college. Basically, I was saying, “here’s how things are going to be. Here’s what you can do to make the transition go more smoothly. Then you will have to take a deep breath and step back. It won’t be easy, but it is necessary.” In the years since then, I have sent that letter out on the listservs every Spring and encouraged DSS folks to share it with parents of incoming students. What all those parents who read my letter never learned is what I am about to share with you – “the rest of the story” (as Paul Harvey would have said).
For those of you who have not “met” my daughter (is there anyone out there who hasn’t heard me brag?), Cottie has CP and uses a motorized wheelchair. She has need for a personal care attendant for ADL, but she has surprisingly good fine motor coordination and can manage a fork, a keyboard, or a smart phone/tablet with no problem (and certainly better than her mother can). She has limited intelligible speech (I can usually understand her when she chooses to talk, but few others would without significant context). Cottie uses what someone once dubbed “sign-assisted speech” – she uses signs and finger spelling to communicate, but it isn’t a language to her, it is a substitute for speech. She signs/spells one word at a time and waits for you to voice it for her before she goes on. She is bright, and beautiful, has a wicked sense of humor and an infectious laugh.
Up until the time Cottie left for college, her attendant care had been provided almost exclusively by family. She hadn’t used the local public transportation (although she did ride the school bus throughout her Junior High years and for school outings), but she had traveled (with me) extensively (she’d been in 27 states by the time she was 12!). Cottie came through the local school system (graduated with a 3.66 GPA), primarily in the regular education track, although she did have some early experience (primary grades) with a resource room teacher because they couldn’t figure out how to teach reading to a kid who couldn’t read out loud with the others in the Bluebird group. I give you all this as background to my story about her first (and only) semester in college.
Ready for this? Cottie went to Cottey College (she says they spell it wrong). It is a small, private institution in southwestern Missouri. I preface the rest of this by saying that it was EXACTLY the right place for her. The college had never had a student in a wheelchair before, and the folks there were wonderful about working with her (and with me) and figuring out what to do and how to handle new situations as they arose. Cottie did spectacularly well at all the things that, as her mother, I worried most about. She made lots of friends and never seemed to have trouble fitting in, worked well with PCA’s arranged through the local independent living center, and she being 700 miles away from home without a qualm (that part was actually a little unsettling – I had more trouble with it than she did!). She did great at living away from me. The academics? Not so great.
Remember, too, that I have been in the field of DSS longer than my kid has been alive. For some time afterward, I kept kicking myself and saying, “I should have seen all this coming. I should have known better.” But over time, I have come to realize that (1) I was too close to be able to see clearly, and (2) even if I HADN’T been that close, the pieces I will share with you here are things I would never have anticipated. I’ve never heard other folks talk about them (although I can’t believe that Cottie is the only kid who has ever experienced this). That’s why I am sharing this with you now. Just a few things to watch for as you see a new crop of students walk/roll through your door this semester. Here are some unanticipated lessons learned…
LESSON 1 – DON’T FORGET ABOUT ACADEMIC INDEPENDENCE AS WELL AS PHYSICAL/SOCIAL INDEPENDENCE
Cottie had an aide with her in the classroom all the way through her K-12 program. It wasn’t that she needed the aide to assist with much in terms of her academic functioning, but the school district put an aide with her so that the teachers didn’t have to bother themselves with her in the classroom. That is NOT an indictment of the teachers, as Cottie had lots of teachers who were wonderful to and with her. But the school district ASSUMED that she would be a burden and assigned someone to her full time. As time went on (especially her Senior year) we made sure that the aide was less and less obtrusive in the environment. But there were things that the aide was doing, things that seemed very benign, that none of us recognized would be an issue later on. On several occasions, when Cottie got to college, she lost points on assignments because she didn’t turn them in on time. These were assignments that she had finished and ready when she got to class. But she was used to the aide going into her book bag and getting out whatever was needed for each class (including papers to be turned in), and taking care of those things for her. She was more than capable of asking someone for help and wouldn’t have had problems finding someone to assist. She just never thought to ask, because she had never NEEDED to ask before. It was just done for her.
Then, too, Cottie got in trouble re: missing classes in her first class of the morning because she didn’t know how to go late to a class. She had never had that experience. The aide had always seen to it that she was in class on time, and if there was a delay and she came in a few minutes late, the aide helped her in, explained it to the teacher, and got her settled. At college, if she wasn’t ready (because of the PCA situation) to leave for class at the same time as others walking over from the dorm, she had to go to the far end of the classroom building to use the automatic door opener, then make her way to the classroom. If the door was already closed, she had no way of telling them she was out in the hall except banging her footplate against the door until someone figured it out, then making a grand entrance – something she didn’t want to do. So she skipped class. These are just two examples. The bottom line is that when it came to academic independence, it was less about the assignments than it was about the logistics!
LESSON 2 – DIRECT CONTACT WITH FACULTY CAN BE INVALUABLE
In an effort to give Cottie as much independence as possible, we all thought it would be a great idea for her to take one online class, along with her face-to-face classes. After all, she can do anything on a computer that anyone else can do, right? Error, error, error. The online class was a disaster (and she ended up dropping the class along the way because she was struggling so much). In retrospect, I realized the problem was (largely) that the instructor never met my kid. She never interacted directly with Cottie, never spent time in the same room with her. For those who HAVE met my daughter, you know that it only takes about 10 minutes to know how smart and capable she is. Kids like Cottie “sell themselves” very effectively when they come in contact with new people. That never happened here.
To the instructor of the online-only class, Cottie was a name and a student ID#. She knew that Cottie had a disability, and she was diligent in providing the accommodations that were requested. But she never got a feel for the person behind those brief message board responses to prompts – something that would allow her to know that Cottie used a few words to suggest much more. She never got to watch Cottie’s facial expressions and the light of understanding in her eyes as a class discussion progressed. She never got a feel for how capable Cottie was, so she responded only to what was offered through the screen in front of her. We exchanged the face-to-face class, in which Cottie would have trouble making verbal contributions that were equal to that of her colleagues, with an online class, in which all contributions would be through the computer. Seemed like a great idea at the time. But when you type at the rate of about 11 words a minute, you work very hard to say as much as possible with as few words as possible. That may work in the classroom, but not online.
LESSON 3 – KNOWING HOW TO USE ASSISTIVE TECHNOLOGY AND KNOWING HOW TO USE IT IN ACADEMICS ARE TWO DIFFERENT THINGS.
Part of the problem we had was that Cottie’s Vocational Rehab counselor was more than happy to provide a full complement of assistive technology for Cottie’s use, but there was no one available within the VR system to advise on what technology would be appropriate. The very nice gentleman they sent out to work with Cottie had never worked with anyone but blind students before. So he prescribed the same hardware and software for Cottie than he would have assigned to any other new college freshman who was blind. It included a computer, monitor, and printer (good start), a high class scanner, the current version of JAWS, and MathType software. Included in his contract with VR were two training sessions with Cottie, in which he came out to the house, made sure we knew how to hook everything up, and then trained Cottie on how everything worked.
Of course, she didn’t need any help knowing what to do with the computer/monitor/printer. We had those up and running before he got here for the first training session. And she had no trouble understanding how the screen reader and MathType were meant to work. But (1) she didn’t NEED a screen reader. Text-to-speech might have been helpful for long reading assignments. But a screen reader (with all the time spent in reading everything on the screen)? No way was she going to bother with that. And while she might have been able to use the MathType, I am not sure she ever understood how it should be employed in an academic class. She was used to doing most of her math homework in her own hand, with a scribe to help when needed (another one of those things that the aide just “did” that we never thought about as a problem).
Once Cottie got to school, I am pretty sure that she NEVER used either of the software programs, and the scanner had a layer of dust on it so thick that I almost choked on it when I got ready to pack the sucker in a box to take home.
The point is that having assistive technology, and knowing how the technology works is not the same as knowing how to use that technology appropriately. Cottie had no experience using this technology when she was in high school to fulfill academic requirements, so she had no idea how, when, or if she could use it when she got to college. Be sure you ask the right questions about assistive tech for incoming students. It isn’t enough to know what they have. Ask them how they have used it IN CLASSES in the past.
LESSON 4 – ACCOMMODATIONS AREN’T THE SAME AND DON’T WORK THE SAME IN COLLEGE AS THEY DID IN HIGH SCHOOL.
As DSS providers, you already know that. This is a conversation you have frequently with incoming students (and their parents!) when they show up for that initial conversation and you are discussing their accommodation needs. But I wonder how often DSS providers recognize that the implementation of accommodations may be different, too – a difference that is unsettling for the new student.
In high school, when there were tests to be taken, Cottie would take her laptop and go to the Learning Center and write her answers to the questions. It wasn’t so much that she was given “unlimited” time as it was that she was given as much time as she needed. That meant she had no idea how much more time it took her to finish a test than it did everyone else, because she was never in the classroom when the others were taking the test. And THAT meant that when she got to college, and was told that she would have double time, she didn’t know whether that was a lot or a little or enough. I was pretty sure it was enough (as it turned out to be for her face-to-face classes), but just feeling that she was under time pressure (a brand new experience for her) was a little uncomfortable for her at first (self-report!). The bigger problem was in her online class. It wasn’t the time allotment that was the problem, it was the time pressure. That little clock in the upper right corner, clicking off the minutes, was a HUGE distraction and, because of her wounded nervous system, actually elicited a negative effect on her physical performance (kind of “the hurrieder I go, the behinder I get!”).
Cottie was also used to taking all her tests on the computer, and producing her written work that way. College would be more of the same, right? Except that the VOLUME of written work needed in college quickly became overwhelming. In the three weeks between Thanksgiving and Christmas, she typed the equivalent of 27 pages of finished product in papers, tests, etc. Of course, that doesn’t speak to how many drafts and re-writes went into that. She types at 11-14 words per minute. I have never seen my kid as tired as she was when I came to pick her up for Winter Break. She stopped going down to meals for the last two days of finals, and was eating junk food in her room. Why? Because if she went down to meals, she would have to talk to people. In her case, that meant texting to them, and she couldn’t face writing one more word than she absolutely had to! I found her cell phone on the floor in the corner, where she had thrown it in frustration.
LESSON 5 – SOMETIMES MOTHER (or Father) REALLY DOES KNOW BEST!
I blame all of you for this one. You set me up! (Just kidding!). With all the joking that was done in the time before Cottie went off to college – teasing about how no one wanted to have to deal with ME as the Mom, and what a nightmare it would be for the DSS provider who got saddled with my kid (and, therefore, with me!), I was determined not to be “THAT mother.” I tried very hard to stay out of interactions between Cottie and the DSS provider, and certainly never intervened between Cottie and her instructors about her academics. I contented myself with being active in a lot of the decisions and actions needed because a kid in a wheelchair, with a PCA, was a new experience for the college, and they seemed to welcome my input and suggestions about the logistics. But I did my best to pretend that beyond those logistics, she was a full time college student just like every other full time student at the institution, and I should keep my mouth shut and my hands in my pockets and let her resolve things on her own.
Guess what? She WASN’T like every other student. Someone once told me that, “It is all well and good to adopt a philosophy of ‘sink or swim’, but it presumes everyone has had the same number of swimming lessons.” My kid had never even been in the pool. I should have recognized that she was going to need more help to make the adjustment to being treated just like everyone else – something she had no experience with during K-12, with the aide never more than 3 feet away! I should have sent an email or two to the disability service provider when I knew there were problems emerging (like the problem of going late to classes), rather than leave it up to Cottie to try and explain the situation when she had no experience in advocating for herself AND had significant problems with communication, as well.
I am sure the disability services provider at the college would have been willing to be more intrusive and reach out to Cottie to get her in and try to work out a solution, if she had only known that there was a problem to be solved. But I didn’t tell her, and Cottie didn’t know how to. I know you all deal with over-reaching and over-bearing parents all the time. But maybe it is important to remember that when all is said and done, it is likely that no one (not even the student) knows the student’s history or needs better than the parent. Instead of shutting them out, how about retraining them to understand when and how it is OK to get involved.
LESSON 6 – (MOST IMPORTANT) I SHOULD HAVE TAUGHT HER THAT FAILURE ISN’T FATAL.
In the end, I think all these other issues could have been dealt with over time. There was a learning curve, but given enough time I think Cottie would have worked it all out. She didn’t have that time. Why? Because she failed Algebra. She had never failed at anything in her life, because I never LET her fail at anything. I am not sure whether she was (is!) afraid of disappointing herself, or of disappointing me. But that one failure marked the end of her academic career. It completely demoralized her. If I had it to do over again, I would let her fail something when she was in high school, just so that she knew that it wasn’t the end of the world. Hindsight is a great thing, and I am not sure how you can use this lesson, other than to keep assuring students that lots of folks struggle with the higher demand of the academics in college, and the fact that they are struggling doesn’t mean they don’t belong there – only that it is time to seek out new resources to help.
I offer all this up to you under the heading of “for what it is worth.” But I hope it gives you a little food for thought, and that maybe you’ll recognize some of these things with/for your incoming students in the weeks to come. I hope so!
~Janie
There are only two things a parent can give a child. One is roots. The other is wings.
Jane Jarrow served as the Executive Director of AHEAD from 1982-1996, then became a private consultant in the area of disability services in higher education. Under the name of DAIS – Disability Access Information and Support — Jane has been providing technical assistance, professional development opportunities, and support to practitioners for 20 years. Jane received her BS and MS degrees from Purdue University, and her Ph.D. from Wichita State University. Her academic background is in Speech Pathology, and she began her career in higher education as a faculty member at Ohio State (and still lives in Columbus). You can reach Jane at JaneJarrow@aol.com.