Category Archives: self-advocacy

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!

Make sure that your child understands his accommodations

For many students who have disabilities, the accommodations that are provided through their Individualized Educational Program (IEP) or Section 504 Accommodation Plan are extremely important to their school success. The accommodations are the things that are being done in a different way because of the impacts of the child’s disability.  Accommodations could involve changes in the physical environment, school assignments, how the student participates in school activities, instructional materials, how much time a student is given to complete a test or assignment, additional supports, etc.  The range of possible accommodations is mind-blowing, but they are selected based on the unique needs of each individual student.

young student looks at ipad

Children should be told about their accommodations as soon as they are old enough to understand what they are and why they were chosen for them.  Many parents are not comfortable talking to their child about his or her disability.  They worry that it might negatively impact the child’s self-esteem. This concern suggests that the child is unaware that they have a disability.  Even if the child does not know the name of a “condition” that they may have been diagnosed with, most kids are very aware of the things that they have trouble with.  They know that it’s harder for them to write neatly, read, do math, remember things, see the board, walk fast, speak clearly, and so on. If they do have a diagnosis, learning that there’s a reason for why they struggle with certain things can come as a big relief.  Even if there is no diagnosis or other explanation for why, it is generally helpful to have others at least acknowledge that things are difficult, and that it’s not their fault.

Talk to your child about how each accommodation is expected to help and how it should be implemented.  Explain that sometimes a teacher or other school staff member might not be aware of the accommodations. Talk to him about how to handle situations where an accommodation is not provided. Discuss or role play what your child can do or say to let the adult know that he is supposed to have extra time, be moved into a separate room for a test, etc.  Let your child know that it is also important for him to tell you when accommodations are not followed. You want to be able to address any problems as soon as possible.

Speaking with your child about her accommodations also gives her a chance to tell you about what is, and is not, working for her.  It could be time to take another look at different ways that your child’s needs can be met, and maybe see if another accommodation would be more appropriate at this point.  IEPs and 504 Plans are fluid documents and student input can sometimes make the difference between whether you have a document that looks good on paper, or one that actually works for your child.

Having these conversations, and preparing your child to handle “what if…” situations, can help your child learn how to effectively advocate for himself.  That is an important life skill that he needs to start learning as early as possible.

 

Safety Tips for Kids

During the summer months children are outside more and tend to spend more time in public spaces than when most of their day is spent in school.  Other children are home alone for longer periods of time and need to know how to keep themselves safe.  The Charlotte-Mecklenburg Police Department recently included Safety Tips for Children in its June Newsletter. Parents can use these simple rules to help their children stay safe without creating an unreasonable fear of the world that we live in.  Reviewing the safety rules every once in a while will help your child learn and remember them.

Safety Tips For Children

Who is a stranger?  A stranger is a person whom you have never met.  You might have seen the person before, but you don’t know anything about him or her.  Strangers do not look like monsters, aliens or bad guys you see on TV.  Strangers look like ordinary people.  “Safe Strangers” are people you do not know, but can trust to ask for help.  Police Officers, Fire Fighters, teachers, store clerks, etc. are examples of a Safe Stranger.

My Rules for Safety:

  • Before I go anywhere, I will always check with my parents/caregiver.  I will tell them where I am going, how I will get there, who will be going with me, and when I will be back.  I will let my parents know if the plans we talked about change.
  • It is safer to be with other people when going places or playing outside.
  • I will say “NO” if someone tries to touch me in ways that make me feel frightened, uncomfortable, or confused.  I will tell a grown-up what happened.
  • I will not go with a stranger and if he or she grabs me, I will yell for help, say no, kick, run away, and tell a grown-up what happened.
  • I know a stranger should not ask me for help and that it is all right to tell them “NO”.
  • I will not take candy, toys or money from a stranger.
  • I will not tell a stranger my name, address, or telephone number.
  • I will not tell anyone my “Secret Code Word”.  I will not go with anyone who does not use the “Code Word”.
  • I will not open my door or let anyone in the house without asking my parents first.
  • I will not tell anyone that I am home alone.
  • I will trust my feelings and talk to a grown-up about problems that are too big for me to handle on my own.  I know that many people care about me and will listen and believe me.  I know that it is never too late to ask for help.
  • I am a special person and I deserve to be safe.

Deeper conversations can, and should, be held when the time is right.  But sometimes, it’s good to keep things simple.