Hi everyone! I’m super excited to share a new segment on Navigating Blindness called Hindsight 20/20 which will feature parents of blind and visually impaired (B/VI) individuals who have agreed to answer 20 questions with hindsight. My hope is that their stories will encourage us parents who are still heads-down in the day-to-day thick of raising our children and advocating for their educational needs.
These interviews will each be very unique because blindness is a spectrum and each child, parent, and family has different situations, goals, and expectations. As parents, we need to educate ourselves and consider the foundations’ advice, the doctors’ advice, the teachers’ advice and so on (the list of people weighing in on our children’s lives seems endless) but, ultimately, we are our children’s strongest advocates. We are responsible for providing the tools and guidance necessary for them to grow into adults who advocate for themselves in this big diverse world.
Join me in welcoming Jill Richmond as she shares her journey with her oldest son Aaron. Let’s navigate blindness, together.
FB Messenger: “Jill White Richmond”
1. What was the first symptom you noticed and what was your child’s age? Immediately, a few minutes after birth, it was apparent Aaron was blind. The doctors noticed immediately in the delivery room. His corneas were “opaque” – white.
2. What was the official diagnosis and prognosis? He was diagnosed with Peter’s Plus Syndrome. This meant he had Peter’s Anomaly, which caused the blindness as well as other health issues. In my son’s case, he also had a congenital heart defect. The prognosis for his vision was that he would need many surgeries so that he could have some, limited vision, while still being legally blind. He had over 30 eye surgeries in the first 5 years of his life, including 7 corneal transplants (both eyes) and many trabeculectomy surgeries for glaucoma and cataracts.
3. Aside from vision loss, does your child have any additional disabilities? He no longer has any other health issues; they were resolved when he was a child. He is an adult now and has very mild Asperger’s Syndrome.
4. In the days immediately following diagnosis how did you cope and to whom did you turn for support? I had my husband for support.
5. In the first days following diagnosis, what specific fear(s) haunted you the most? Honestly, I was so overwhelmed with my son’s health problems after birth, his heart defect and the necessary hospitalization and open-heart surgery that he had at 3 months of age, I did not feel haunted by his blindness. I thought the blindness was certainly going to be a challenge but it could be dealt with.
6. How much information about the diagnosis and prognosis did you share with your child and how did they react or process the information? My son was a newborn, blind at birth, so he grew up blind and never really had to process the information. He doesn’t know any difference and didn’t realize until he was about 3 years old that other people could see more and see differently. It is a very different situation for the child who is born blind as compared to a child who loses their vision as an older child or when they are a teenager or an adult. Losing your vision later in life is much more difficult to adjust to, of course.
7. In which state(s) did your child receive service/attend school? For the infant and toddler program and as a preschooler, 5 years in Virginia. Then Maryland for all of elementary, middle and high school.
8. Describe your child’s K5-12 educational setting (public, private, home). Did your child have an IEP? If so, briefly describe the situation. For preschool, the first year he attended a self-contained special ed class in the public school. This special ed class was not a good fit for my son as he was already able to speak at an age-appropriate level in complete sentences and the other children in this class did not have language skills, making it difficult for a young blind child to socialize. His second year of preschool he attended a private school, regular classroom, no braille instruction or materials. My child’s educational setting, starting in Kindergarten, was always public school, mainstream, regular classroom with an IEP.
9. Describe your child’s accessibility accommodations including Braille, Assistive Technology and Orientation & Mobility. My son always had an IEP that dictated that he was to do all his reading and writing in Braille. There was never a chance that he would be able to see large print. He also uses a white cane and received Orientation and Mobility instruction. My son’s IEP stated that he should receive all books, textbooks, materials, worksheets, maps and graphs in raised line, other materials in tactile format, etc. in Braille every day. His IEP also stated that he would receive O&M lessons once/twice a week. Starting in about 3rd grade, the IEP also dictated that he should receive assistive technology software, devices and instruction, including Jaws ProScreen Reader software, a Perkins Braillewriter, a BrailleNote, an embosser, and then, in high school, Duxbury software and Kurzweil software, etc. Most of the necessary and appropriate accommodations he needed were written on his IEPs. The problem was getting the school district to actually PROVIDE THE SERVICES, including instruction and all materials and devices. Very, very difficult. This school district, Calvert County Public Schools in the state of Maryland, tried hard to fight us and tried hard to not provide services whenever possible. They were really nasty and, as I became a more aggressive and better advocate, they continued to fight against me to not provide services my son was legally entitled to. The Teacher of the Visually Impaired (TVI) he had Kindergarten through 3rd grade was very nice, attentive and a good TVI for the little kids. However, she didn’t know Nemeth Code or how to use assistive technology. For example, she was unable to teach how to use a BrailleNote. She was also overloaded with too large of a caseload of students. At the end of my son’s 3rdgrade, she quit. About 6 months later, we sued the school district for not providing my son with a TVI and not providing Braille books and materials. We went through Due Process with an attorney appointed for us by the National Federation of the Blind. We prevailed; however, the school district continued to refuse to search for a TVI or offer interviews. I then called many graduate schools around the country and found candidates for the school district to interview and, with the help of articles in the local and national newspapers, I was able to put enough pressure on the superintendent of our school district so that, months later, he finally agreed to interview a candidate to hire a new TVI for our school district. She was hired in January of my son’s 5th grade school year. She was an excellent teacher and things started to improve for my son after she came on board. Without her, I don’t believe he would be the college graduate that he is today.
10. Looking back, what was the biggest sight-loss related challenge you had to overcome and how was it resolved? My son was born blind and didn’t really feel the same types of sight-loss challenges that others feel when they lose their vision as an older child or a teenager. The biggest challenges my son encountered being blind were being bullied by both children and adults at his school and by the school districts refusal to provide appropriate Braille materials and special education services.
11. Ultimately, what resources were the most beneficial to you and your child? (online, educational, state, community, books, media, etc.) We got support from the National Federation of the Blind.
For books: www.braillebookstore.com and www.seedlings.org. Now for audio products: www.learningally.org and www.audible.com.
12. Are you actively involved with any blindness advocacy groups or parent groups? If so, please tell us more. Yes, the National Federation of the Blind. I also participate in parent groups on FB, including NOPBC and other IEP parent groups on FB. I also volunteer as a special education advocate. I help parents through the IEP process, attend IEP meetings with them, help them learn to advocate and deal with the school system, and help them get the special education services that their blind children are legally entitled to under federal law. (Any parents reading this are free to contact me for support.)
13. Did your child have a mentor? If so, tell us about their relationship. No.
14. Did your child independently attend any blindness-specific camps or training centers? If so, please describe. Yes, my son attended the Space Camp for the Blind for 3 years. Space Camp for the Blind is a one-week, sleep-away camp in Huntsville, Alabama, run by the U.S. Space and Rocket Center. It is a wonderful camp for blind children and my son loved it. My son also attended a 1-week summer camp run by the Lion’s Club and several summer camps organized by the National Federation for the Blind. He had mostly good experiences at these summer camps.
15. Did your child graduate high school and go on to receive higher education? If so, what course of study? Yes, my son graduated high school and graduated from a four-year college: Goucher College in Baltimore, MD. He has a Bachelor of Arts degree in International Relations. He also has completed a certification course to teach English as a second language.
16. Is your child currently employed? If so, what is their job and/or career goal? My son currently works some weeks full-time and some weeks part-time. The amount of hours per week for his work is based on availability and is flexible. He teaches English as a foreign language online to students from around the world. He very much enjoys this type of work and is happy with this career choice — except for the salary. He only averages about $6.00/hour.
17. Describe your child’s current living situation. My son does not make enough money to fully support himself, so he lives with us, his mother and father in the family home. He works from home, online, which is an appropriate situation for him, because he cannot drive, of course.
18. Does your child currently navigate with a cane or a guide dog? Please share your experiences. My son, who is now 27 years old, now navigates with a cane. He also has a retired guide dog living with us from Guiding Eyes for the Blind, Yorktown Heights, New York. As a child, he was a cane user. For children, I recommend making sure that the Orientation & Mobility instructor that your child is receiving instruction from is certified, licensed and knows what he/she is doing. Make sure that your child has O&M instruction and lessons that are in many different public places, not just at his/her school. When my son became a teenager, he became interested in having a guide dog. At the time, we already had a pet dog, so we were initially against him getting a guide dog. We didn’t want another dog. However, he researched about the responsibilities of having a guide dog, how to apply and which guide dog training center is the best and begged us until we relented! He applied to GEB when he was 16 years old and was accepted about 10 months later. During the month of August, before his junior year of high school, he attended a 1-month training program at Guiding Eyes for the Blind and got his sweet guide dog, Nonnie. They worked well together for many years. She is now 12 years old, retired and lives with us. My son is now back to using a cane. As a 27-year-old adult, he has discovered that he is interested in traveling internationally and using a cane has become more convenient for him at this point in his life.
Regarding experiences regarding my son using a cane:
He was in third grade. Another child grabbed the cane from my son’s hand and hit another child over the head with it. The school took my son’s cane away and refused to allow him to use a cane at school and blamed me, since I was the person who had insisted he have a cane and O&M instruction. I had to fight with the school to get them to allow him to use the cane. The school often complained that my son’s cane was a danger to other sighted children because the sighted children couldn’t pay attention enough to not get tripped by it. Using a cane as an adult was never a problem, but as a child in an elementary school (a school that didn’t want to educate a blind child,) it was sometimes difficult! Also, when my son was young, he didn’t have good instruction in how to swing the cane and use it properly. A good, certified O&M instructor who knows what they are doing is critical.
Regarding experiences regarding my son having a guide dog:
As an adult, my son did have some difficulties getting Uber rides with his guide dog. It was never a problem with a regular taxi company, but Uber drivers would often show up and refuse to take my son and his dog. He would try to hide his dog behind a bush and jump in the Uber car. He did this once and then, although his dog was clean and nothing happened in the car, he was automatically charged an extra $50 “cleaning fee” for the dog. Also, some Asian restaurants and occasionally some other places will be “disgruntled” about walking in with a guide dog, but this is the rare exception. In the USA, guide dogs are usually welcome everywhere and he had mostly all good experiences.
My son had an amazing experience during the 1 month time period he spent training at Guiding Eyes for the Blind. Every day was extremely challenging and the training program is rigorous, but it was a good challenge for him and he came home more confident. He also had fun in the evenings hanging out with the other trainees, and the food was good! Getting his guide dog was a very exciting part of his life and he loved the time he spent at Guiding Eyes for the Blind.
19. With hindsight being 20/20 what do you wish you could go back and tell your younger, less experienced self? I would definitely make changes in how I advocated for my son’s education at IEP meetings. I would be MUCH more aggressive and demanding that my son receive all appropriate and necessary special education services. I wish I would have been more knowledgeable about special education law when advocating for my son at his IEP meetings. Also, I wish I would have been more aggressive about fighting back with the school regarding the bullying he received and standing up for him and against the school regarding bullying.
20. Please describe your philosophy or motto for raising a child who is blind/VI. My motto for raising a blind child (without other disabilities) is that your blind child can do almost anything that any other child can do, with the appropriate and necessary accommodations. Your blind child should not be catered to hand and foot and given everything, they should have to work for it just as any other child should. Don’t allow your blind child to be afraid of trying new things and make sure that your blind child has many opportunities to try out different types of experiences in life.
More about the Hindsight 20/20 Segments: I, Kim Owens, am the mom of a high school student who has recently lost his vision to an aggressive form of Retinitis Pigmentosa (RP). I may not personally agree with everything that will be shared by each parent, but I don’t have to because: Parents need to trust their own intuition with regard to their children. These answers are in the parent’s own words and have been shared with the permission of their adult children. Most stories are from the US because that is where the majority of my network resides. As this segment’s content grows, I hope to receive responses from international parents as well.
If you are a parent who is interested in sharing your journey please contact me! Thank you.