With so many elementary school children learning at home these days, my Seeing Eye dog and I haven’t made a school visit in months. I miss being with the kids, but time off gives me a chance to reminisce about visits we’d done in the past. Learning that today, October 15, is National White Cane Safety Day made me think back on a day I especially enjoyed at Eastview Elementary School in Algonquin, IL long before the pandemic hit.

When I found out that three students at Eastview were blind, I arranged to have Braille copies of my children’s book, Safe & Sound sent there before our visit. I’d use one myself to show the kids at different grade levels what Braille looks like and how it works, and the other three copies would be given to Miguel, age 10, and Seth and Ethan, both age 8. I didn’t expect that these three little blind kids would be able to read the Braille books on their own, I just thought that if the other kids at Eastview might be getting books, these three should get a copy they’d be able to read someday, too.

The Braille version of Safe & Sound was produced in contracted Braille, a form of Braille I’ve never been able to master. Contracted Braille has a bunch of shorthand symbols (contractions) for commonly used words and parts of words: there’s a cell for the word “and,” another for the word “the,” and so on. Most of the letters of the alphabet are also used as shorthand for common words, such as “c” for “can” and “l” for “like.” Kind of like texting, only you can’t make as many mistakes!

When I met the vision teacher at Eastview, I apologized that my book was only available in contracted Braille. “No problem,” she said. “That’s the only Braille these guys read!” Sure enough, the little buggers were Braille experts.

Really, all the Eastview kids seemed to have a strong interest in reading. The school’s principal, Jim Zursin, emphasized reading with all the students, and with the help of his staff and the PTO, they were making sure reading wouldn’t end when summer began. Every child who participated in Eastview’s summer reading program and reached their goal would be marching in the Founders Day Parade that summer, each star reader wearing a sandwich board with a drawing of the cover of his or her favorite book on the front. “There’ll be hundreds of books marching down the street,” Mr. Zursin exclaimed. You didn’t have to be able to see to know there were stars in his eyes, just thinking about it. Kids who read that summer would be invited to a community pool party, too, where Mr. Zursin promised to jump off the high dive – with his clothes on!

That’s Miguel on the left and one of the twins in the center. Photo by Andi Butler, www.mrsbillustrations.com.

I’m pretty confident Seth, Ethan and Miguel marched in the parade that year. They’d be swimming at that pool party, too. They love to read, and turns out they can write in contracted Braille, too. Seth, Ethan and Miguel each wrote a poem for me, and they had to work hard to hold back their laughter as I stumbled through some of the contractions when I tried reading their work out loud. They were happy to help me through, and in the half hour the four of us were able to spend together in their vision resource room we became fast friends. Miguel showed me how his talking watch worked, and Ethan and Seth, twin brothers, counted off their favorite rides at Disney World. We all laughed at how other kids find Space Mountain so scary. It’s in the dark” we said. Big deal.

The boys had lots of questions about my Seeing Eye dog, and I told them that in order to train with a Seeing Eye dog you have to learn good orientation and mobility (white cane) skills first. “Knowing where you are by what you hear, how the ground feels, which way the wind is blowing – you’ll need those skills when you get a Seeing Eye dog, too,” I told them. You can’t train with a Seeing Eye dog until you’re 16 years old, so they had a lot of time to perfect their white cane skills before then. “The Seeing Eye wants you to get good with your white cane before you train with a dog. People who know orientation and mobility and can get around with a white cane are the ones who do best with Seeing Eye dogs.”

Later on one of their teachers expressed how glad she was that I’d said that. Apparently the boys hadn’t been using their white canes as much as they should. “Now they’ll have an incentive.”

Before I left their room, each boy proudly presented me with a special collar he had made for my Seeing Eye dog. “We strung the beads ourselves,” Seth said, proud of their work. The collars were made of ribbon, and in addition to the beads, each ribbon had a big bell on it, too. “That’s so you’ll always know where your dog is,” Miguel explained.

The three of them came up after the all-school assembly at the end of the day to say goodbye. When I reached out to shake Seth’s – or was it Ethan’s? – hand, I felt a rubber handle. He was using his white cane!

Some of you might remember a 3-part series I wrote in January about flying to Houston to visit a friend. That friend is now my boyfriend.

Juan and I go way back. We met in September 2005. I was in sixth grade, and he was 19 and a fifth-year senior (that’s what they called it in the vision department at school). Fifth year seniors graduated like everybody else in their school but then stayed an extra year to focus on vocational goals. One of Juan’s goals at the time was teaching Spanish to blind and visually impaired students. I happened to be taking a mainstream Spanish class and could use all the help I could get, so he was assigned to tutor me. And when our middle and high schools realized they didn’t have enough people to field individual Goalball teams, they combined them and we did goalball together.

We didn’t keep in regular contact much after that, especially after I went to the Illinois School for the Visually Impaired, a residential school hours away from our homes in the Chicago suburbs. Juan and I texted on each other’s birthdays and would call every few months just to catch up. Then his father took a job in Houston, his family moved to Texas, and Juan joined them there in 2016.

Fast forward to 2019. Juan was back to visit family and friends, and I was invited to join some of them on a beautiful September day in Chicago. I found myself observing the way he interacted with me, with the people around us, with Uber drivers, and customer service. I observed his confidence, his outgoing personality, the way he spoke of his passions. The way he talked about what it was like to move from Illinois to Texas, the way he tackled all the research to find resources there…all of it. And I thought, “I think I kind of like him. This is someone I could see myself with.”

But I wasn’t sure.

A week later, I drummed up the courage to text him. “I want to make sure I actually like you,” I wrote. “That I’m not just single and like the idea of a person.” I told him I was still figuring out my feelings. When he wrote me back, he said he was doing that very same thing. He added that during the day in Chicago we’d both been observing each other without the other knowing it. Because he was just about to board his flight, the conversation stalled after that. A few days later, he called me to revisit the conversation, and that’s when he told me that his next visit would be in November for my birthday and asked if he could take me on a date.

Great minds think alike, I suppose.

That phone call about taking me on a date came just 11 days after our time together with other friends in Chicago. I was excited, but skeptical. I’d never known anyone to plan so far in advance. I waited for a cancelation that didn’t come.

We went on our first date on November 17, 2019. Then, since he had flown to Chicago to celebrate my birthday, I flew to Houston in January 2020 to visit and celebrate his — you already know about that from a blog post I wrote this past February, 2020. Sometimes I think I like someone and then I spend a lot of time with them and…realize I don’t actually like them.

That didn’t happen this time.

Stay tuned for part two of Ali’s four-part series on how long-distance relationships can work – and thrive — during a pandemic.

October is Disability Employment Awareness month, and last weekend’s feature on 60 Minutes about an architect who says losing his sight made him better at his job is a perfect example of how resourceful people with disabilities are at work.

Chris Downey had been a working architect in San Francisco for years before 2008, when surgery to treat a brain tumor left him blind at the age of 45. He said he was so familiar with the city that within six months he was back at work and using a white cane to commute to the office on his own. The 60 Minutes story didn’t answer all my questions about how he works as an architect without being able to see anymore, but I did find an interview at The Architect’s Newspaper where Downey explains how he uses wax tools called wikki stix to sketch embossed plans. Maybe they showed that in the 60 Minutes feature without describing it out loud? Anyway, in that same Architect’s Newspaper interview, Downey described one of the first projects he worked on after losing his sight: a Polytrauma and Blind Rehabilitation Center for the Department of Veterans Affairs in Palo Alto.

“The client and the team were becoming aware that they really didn’t understand how space and architecture would be experienced and managed by users who would not see the building,” he said. “When I showed up as a newly blinded architect with 20 years of experience, there seemed an opportunity to bridge that gap.” The fact that he was a rookie at being blind was a bonus. He said, “I was not that far removed from the experience of the veterans who were dealing with their new vision loss.”

Eight short years later, Downey has his own business consulting on design for people who are blind and visually impaired. In addition to the VA project in Pal Alto, he has worked on renovations of housing for people who are blind in New York City and consulted on the Transbay Transit Center in San Francisco. He teaches periodically for the University of California, Berkeley, Department of Architecture, serves on the California Commission on Disability Access and chairs the Board of Directors for the Lighthouse for the Blind in San Francisco. He also speaks internationally about disability and design.

I did hear the famous architect speak once — virtually. Chris Downey’s TED Talk includes one part where he says urban planners who think of people who are blind as prototypical city dwellers will come up with design elements that make life better for everyone, whether sighted or not:

• a rich walkable array of predictable sidewalks
• no cars
• many options and choices at the street level
• a robust, accessible, well-connected transit system

I lost my sight in 1985. Since then, my husband Mike and I have lived in a college town (Urbana, IL), a Chicago suburb (Geneva, IL), an ocean town (Nags Head, NC), and a big city (Chicago). We have loved each place for different reasons, and for me, our 15-plus years in Chicago have rewarded me with fantastic job opportunities (moderating this blog, leading memoir-writing classes for older adults, and giving presentations at schools and civic events) and an unequaled sense of independence. I have to agree with Chris Downey when he says keeping accessibility in mind when designing urban architecture really can make things better…for everyone.

Edited 10/5/2020: The Census was extended once again to October 31st. 

Edited 10/1/2020: The Census was extended to October 5th.

The United States has counted its population every ten years since 1790 — it’s mandated by the United States Constitution. A strong proponent of the census way back then, James Madison, figured the only way public officials could “rest their arguments on facts, instead of assertions and conjectures” was if the official count of the population was as accurate and complete as possible. Which means, hey: let’s make sure all of us with disabilities are counted, too! Here’s why:

• Transportation. Communities use census data when planning for public transit routes, upgrades and changes. Billions of dollars in federal funds are distributed for transportation projects, including public transit, accessible pedestrian signals, and truncated domes at intersections. We need all of those things to assure we can get around safely. The funding each state gets is based on census data. If we are not counted, that could mean less money for our cities and states for these projects. We need to be counted.
• Health and Social Services. States receive billions of federal dollars to support a wide variety of programs, including funding for services we use that are specifically for people with disabilities. We need to be counted.
• Representation. The number of people who respond in our communities and states will determine the number of electoral votes we get to help choose who becomes president, the number of seats our state gets in the U.S. House of Representatives, and how the congressional and state legislative districts are drawn. We need to be counted.

After previously stating the census would run through October 31, the bureau announced it was cutting the count short by a month, moving the deadline for responding to the 2020 Census up to October 5th, 2020. This year, while the world faces the impact of COVID-19, people with disabilities need to be counted. More than ever.

My husband can see and in the past he filled out the form for the two of us. This year I was able to fill our form out on my own. The 2020 Census Fact Sheet reports that the 2020 online questionnaire follows the latest Website Accessibility Content Guidelines for people with disabilities. If I could fill out our census form, you can do it, too! Visit https://my2020census.gov now, before it’s too late.

Here it is! Part Two of speech-language pathologist Marsha Boyer’s guest blog about teletherapy. The owner of Speech Connections, Inc in Indianapolis, Marsha says she’s seen countless changes in the Speech and Language therapy field over her 27-year career, ”but the year 2020 has brought a new meaning to the word ‘change!’” In Part one of her Education and Parenting guest post, she described how she, the children she serves and their parents made the switch from face-to-face therapy to tele-therapy while sheltering in place. Today she offers tips for speech-language pathologist and parents for the new school year.

by Marsha Boyer, M.A.,CCC-SLP

I believe I speak for most speech-language pathologists and parents when I say that in the early stages of the pandemic we were using what resources we had and trying our best to continue with services. Now that we have had some time to take a step back and assess what we’ve accomplished so far, we can look at making a few adjustments to improve the delivery of services. I’ve learned a lot in the last six months or so, and today I’m sharing my tips to help speech-language pathologists and parents get the most benefit out of your tele-therapy sessions.

Parents:

1. Try to use a large screen device or computer, and check for good internet connection. Tablets and phones are sometimes what are available when parents also have to be online for work, but I have found these devices often do not allow clients to interact with online activities. Also, find websites that help you check your internet speed and quality.
2. Keep nearby distractions to a minimum. Siblings and pets are great topics for us to talk about but sometimes they are doing things that draw attention away from the speech therapist.
3. Finish up those snacks and meals before meeting. Though I would rather have them happy than “hangry”, we lose some quality therapy time while they are eating, leaving me to stand by waiting.
4. Set up your child in front of the camera so that your speech therapist can see their entire face. Hearing their speech through a speaker often does not allow me to hear those subtle changes. If I also have the visual component, the two together help me make a better assessment of how they are doing.

At this point in the year, most speech-language pathologists have had some experience with tele-therapy and most likely have materials and routines all set. My advice to speech pathologists at this point is to stay true to your style of therapy as much as you can to maintain some normality. For instance, though green screen activities are engaging, if that was not part of your skill set before the pandemic you may not want to tackle that yet. Annotating PDFs and using interactive learning games can address goals just as well. Here are a few additional tips to take your online sessions up a notch.

Speech-Language Pathologists:

1. Have an external microphone and use headphones or earbuds while meeting with a child.
2. Plan ahead for creative ways to engage very young children. We all know preschoolers can be unpredictable, but if you have a general idea of how you want to address a particular goal, you reduce the need to scramble for a way to pull in their attention. Even a simple hide and seek game where you ask a parent to help them hide an object while they turn off video, then back on for you to look around and ask them “where did you hide it?” This type of simple activity is great for working on answering questions.
3. Consider a healthy mix of direct therapy from you and parent/child observation. Parents are happy to help facilitate and be a part of the session, but not all parents are at the same readiness level when it comes to being the leader. To a speech therapist, the parent/child interaction can be valuable information, but several parents I’ve spoken with have expressed feelings of stress and lack of confidence when asked to play with their child while the speech therapist watches and adds tips for drawing out specific skills.
4. Go the extra mile now and again. I use a specific program for stuttering which involves the child keeping a set of cards that explain their fluency “tools.” I don’t ask the parent to print out these cards at home. Instead, I laminate the cards and send them by mail to their home. I include some fun stickers as encouragement, too, and discovered that kids get really excited about receiving mail with their name on it. Now I make encouragement packages a part of my practice for all of the clients I see.

Whether you’re a parent or a speech therapist, I hope my tips help you get more out of your therapy sessions!