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A Mom’s personal experience with her Deaf-Blind son’s Transition to College

By Debra Pickens 4756155697_a85f3fb6db_m.jpg

“If you don’t ASK, they won’t TELL!”

Have you ever had a feeling in your gut that something wasn’t right? When the Director of Disability Services told me that they didn’t know the Braille special math code, and that my son should drop College Algebra, I knew immediately why I had that feeling in my gut. “Here we go again, I thought. Another battle to fight!”
My son Billy was born on February 13, 1997 with Norrie’s Disease. He is totally blind with progressive hearing loss. Billy received early intervention services in the home and daycare. We established his IEP when he turned three and most of his one-on-one Specialists transitioned with him to public school, where they had a Visually Impaired (VI) resource room with a full-time Teacher of Visually Impaired (TVI).
Billy learned how to read and write Braille early. With the help of the TVI, Braillewriter and Braille Note taker, Billy was on the A/B Honor roll throughout his 12 years of public school. He graduated with a 3.5 GPA and a strong desire to attend a four-year college. He knew that there would be obstacles, and he had learned how to advocate for himself. What he didn’t know is that he would not have ACCESS to his academic materials in a timely manner when school started.

We met with The University’s Disability Services in late June and Billy’s counselor emailed his accommodation letter out to all of his professors early July. The letter told them “What” to do but not “How” to do it. When school started at the end of August, we found that his College Algebra class would be conducted mostly online, which was not in the course description when he registered. If you don’t ASK if it is an online course, then they want TELL you. We immediately reached out to the Director of Disability Services for guidance. Her advice was to drop the course until they could figure out how to get him ACCESS to the material. We knew that was not an option. He only had registered to take 12 hours and if he dropped the course, then his financial aid would not be granted.

The second suggestion was to audit the course or take an incomplete until he could obtain ACCESS to the material. Billy decided that he wanted to try using a one-on-one personal assistant to read to him and assist him in navigating the online system. This did not work because his one-on-one personal assistant did not know how to teach him College Algebra. We are still working with the Director of Disability Services to receive his quizzes and tests in Braille, which is his preferred method of communication.

The next battle was with his Theater class. The “Plays” were emailed to him as photo copies or in a pdf document. The documents would not translate to Braille on his Braille Note taker. We didn’t know to Ask them to convert to a format, which could be saved on a digital card and transferred to his Braille Note taker for him to read it in Braille, and they didn’t Tell us. He sat in class one day while the rest of the students were taking a quiz and he didn’t have ACCESS to the quiz in Braille. The inexperienced professor told Billy that she had reached out to Disability Services to ask “What” and “How” to get him ACCESS to the material and no one had responded.

By this point, Billy was overwhelmed and finally reached out to Mom for help. I communicated with the Director of Disability Services via email, telephone and face-to-face. I found out that all of the information submitted to be brailled a month ago had not been brailled yet, including the syllabuses for his classes. All of his professors were willing to make accommodations for Billy, but didn’t know “How” to do it. The Director of Disability Services had to reach out to them individually and explain the process of getting Billy ACCESS to his course materials.

The technology battle is still ongoing. Billy met with the AT Specialist at the University several times, but the AT Specialist did not know how to use this specialized equipment and Billy had a hard time understanding his accent. We had to request training through Division of Services for the Blind (DSB) and we are still waiting on a response. In the meantime, we paid for an AT Specialist who knows Billy’s specialized equipment to travel to Charlotte and train Billy on how to use some new technology. I regret that I did not include more detailed technology goals within his IEP starting in middle school.

The Orientation and Mobility (O&M) battle was by far the worst transition experience we both encountered. I sent Billy’s class schedule to DSB in early July. He was referred for O&M services in late July. He did not start receiving services until late August. She worked with him only 3 hours per day for about 3 days and she was not available during Billy’s first week of school. I had to pay for him to have a one-on-one personal assistant to help him get around the campus during that first week. The O&M Specialist was also not trained to teach someone who was born Blind and needed sensory orientation as well as mobility directions. Once again I had to pay for someone to come from out of town to train Billy on how to use the GPS Trekker.

Along the way I began to question whether or not college was for Billy? Now I know that, regardless of the obstacles we face,  with or without a disability, it is okay to REST but you should never QUIT!  Therefore, when I wake up in the morning, I will continue to ASK and FOLLOW UP until I find someone who can TELL us not only “What” to do but “How” to do it!

Look beyond the school building for resources

We often have to remind parents of children who receive special education services that it is the school district as a whole that is responsible for providing a free appropriate public education (FAPE) for their child. They are not limited to the resources within their child’s specific school building. This would seem like a no-brainer, but it is surprising how often that detail is missed when an IEP team or other school staff are trying to address the needs of a student who has a disability.

School staff will sometimes only think about the personnel that is currently assigned to that school when they are considering instructional strategies, adult-to-child support, equipment and assistive technology, behavioral interventions and supports, etc. Sometimes good ideas are dismissed because “we don’t have the resources for that.” Lack of resources is not a legitimate reason to fail to meet a child’s educational needs, but it is also a reality that resources are not unlimited.

One of the qualifications to serve as the LEA Representative on an IEP team, is for that individual to have knowledge of the resources of the entire school district or Local Education Agency (LEA). The LEA Representaive should be able to tell the team about LEA staff with special expertise who can be brought in as consultants who can provide ideas, training or help create a plan of action. Behavior Specialists and Psychologists can lead the functional behavior assessment (FBA) process and help develop positive behavior support plans. Reading specialist can help identify which reading program might be a better fit for a particular student. Specialists can also help staff better understand a particular disability, how it may impact the child in question, and offer research-based interventions and strategies that have been proven to be effective. Many school systems have staff who can conduct assistive technology assessments and help identify devices or equipment that might be appropriate for a specific child. Other specialist have much to contribute as well.  Somebody just needs to invite them in!

There may also be specialized programs offered within a school system that not everyone knows about. In a worst-case example of that, there was child who received only very limited home bound services for months due to his behavior. The school had told the parent that they had tried “everything” before removing the child from the school.  After the parent sought help from the Parent Training and Information Center, an IEP meeting was held with several Exceptional Children’s Department central office staff members present.  It turned out that the school district had three different alternative education programs that could have provided this child with a full-time education in a less restrictive setting. These programs were not considered because the people in the school building were not aware of them.

Many state education agencies also offer consultants who can be called on for help, often at no cost to the school district. There may be centralized funds that can be used to meet a student’s disability-related needs. There may also be clinicians and programs available within the local community that can help either during or outside of school hours.

The bottom line is that school teams should keep looking and asking questions until they find something that will work for the child.  When they have tried everything in the school building tool box without success, they should go out and get more tools. Giving up or settling for anything less than true FAPE is not an option.

High interest books for lower reading levels

Have you heard about the Tar Heel Reader?  It’s a website that provides free access to books on a wide variety of topics for individuals of all ages who have a low reading level.  Tar Heel Reader was created through the collaboration between the Center for Literacy and Disability Studies and the Department of Computer Science at the University of North Carolina at Chapel Hill.

The collection currently contains over 24,500 titles, including some in 19 languages other than English.  Each book is easy to read with pictures or visuals on each page.  The amount of text on each page is limited and the language is generally simple and easy to understand.  The vocabulary may be specialized based on the topic.  For example, there is a version of  Lord of the Rings on the site that contains names of people and places that you don’t run into in the natural world!

Topics range literally from  soup to nuts.  There are books on foods, animals and nature, health, history, fairy and folk tales, poetry, people and places, sports, fiction, art and music, and so on.  Some of the material is appropriate for younger children, but a lot of it is targeted toward adolescents and adults who have a low reading level.  It’s a way to enjoy printed material on age-appropriate topics in spite of struggles with reading.  Students can even use Tar Heel Reader to do research on a subject or person as part of a school assignment.

Here’s the best part: each book can be speech enabled so that someone can listen to the text as it is read to them in a choice of voices!  The books can be read directly from the website or downloaded as slide shows in various formats.  There are interfaces available to make the books accessible through the use of touchscreens, IntelliKeys, switches, etc.

Tar Heel Reader even offers a way for people to create their own books, which can then be “published” on the site.  Parent supervision is recommended, especially for younger children and those for whom content control is advisable.  A “Favorites” page is available that can be used as a way to steer someone to a selection of approved options.

I’ve added Tar Heel Reader to the short list of things that I find myself describing as “the best thing since sliced bread.”  Check it out!  http://tarheelreader.org