I am pleased to introduce speech-language pathologist Marsha Boyer as today’s “Education and Parenting” guest blogger. The owner of Speech Connections, Inc in Indianapolis, Marsha has 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,’” she says, describing in this guest post how she, the children she serves and their parents are managing the switch from face-to-face therapy to tele-therapy.

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

After Governor Eric Holcomb directed Indiana schools to close back in March, I got to work structuring online sessions that would be as close to the face-to-face appointment structure as possible. The number of children in my private practice caseload pales compared to my counter parts in the school setting, but I do encounter young children with hearing loss and hearing aids, children with genetic syndromes, Apraxia, stuttering, and Autism, to name a few.

These children typically have an Individualized Education Plan (IEP) identifying deficits their speech language pathologist have determined are impacting the child’s education. Things were changing so quickly in March that I only had one short weekend to plan for the switch from face-to-face therapy style to online. Granted,one weekend is not enough time to wrap your head around providing quality services under a completely new structure, but I felt compelled to do what I could. School therapy was non-existent while school systems drew up policies and procedures for tele-therapy, and my clients needed to keep momentum going with their speech and language goals.

Many face to face therapy routines I’ve used for years vanished into thin air when we switched to tele-therapy. Without being able to work together physically and manipulate objects together, what would we talk about? How would I help clients who need tactile guidance to show them how to make a sound or to explore a toy? I needed high-interest lessons and activities. Educational videos and songs, too.

Where to find these? Go to the experts: fellow speech-language pathologists!

While searching for online therapy materials and creative lessons, I came across a Facebook group of speech-language pathologists who had been tele-therapists even before the pandemic. To be successful in this field, you must learn to come up with creative, adaptive ways to teach a skill or engage a child. Their tips and resources were extremely helpful when I was trying to hit the ground running. Thanks in large part to them –and to the children I serve and their parents — I’ve been leading tele-therapy sessions for months now.

Stay tuned for part two of this post, where speech language-pathologist Marsha Boyer shares tips to help parents make the most of their child’s tele-therapy sessions.

In his introduction to a story on NPR a few weeks back, Morning Edition host David Greene pointed out that here in the United States, more than 7 million school children receive special education services. “But this spring, many of those vital services, like physical therapy, simply stopped,” he said. “So what happens now with some districts planning to continue remote learning in the fall?” To answer that question, NPR took an approach like we’ve been taking with our Education and Parenting blogs lately. Just like us, they went to experts: the parents of the children with disabilities.

The story features a Minnesota mom with a third grader who struggles with auditory processing, and a mom in Rhode Island whose son has cerebral palsy and a cluster of other conditions.

The mom with the third-grader said her daughter had a hard time keeping up with teacher’s using an iPad. “They’d tell her, you know, look at this problem, look at that problem, no, show me your worksheet…” she said. “I mean, the teachers were doing the best they could, but all those rapid verbal directions just overwhelmed her.” The result? Her daughter has gone from loving school to dreading it.

The boy in Rhode Island who has cerebral palsy loves school but got little of the therapy he needed last spring while school was online only. His mother, a single parent, needs him to be in school this fall so she can work. But how can she send him to school if it’s going to be a health risk? “One more mistake could land him in the hospital,” she says, worrying that a hospital stay like that could be fatal.

Like so many other COVID-related stories these days, this one offered few solutions. That said, I was pleased that NPR found the issue important enough to give it air time. The reporter ended the story by explaining that a handful of lawsuits have been filed by parents and advocates around the country arguing that schools broke federal disability law by providing insufficient services in the spring. “Disability rights experts say this fall, schools have to do better for the parents who are angry or ready to give up, for the schools that know they could face legal consequences if they don’t, and, most importantly, for the kids for whom remote learning wasn’t just inconvenient or boring, but a painful absence of vital care for months that could set them back for years.”

Stay tuned to the Easterseals National blog for a two-part Education and Parenting post by a speech-language pathologist doing all she can to treat the young children in her practice remotely.

I am pleased to introduce Deana Herrman as our featured Education and Parenting guest blogger today. The mother of two, Deana is a disability advocate and healthcare worker who is working on a PhD in disability studies at University of Illinois Chicago. Her daughter Anja uses a wheelchair and started her freshman year of high school last week. “In her bedroom,” Deana explains. “Her school is full remote.” In her guest post today, Deana welcomes parents of non-disabled children to a world of uncertainty when it comes to having their kids back in school.

Deana Herrman with her daughter Anja

An Open Letter to Parents of Non-Disabled Kids

by Deana Herrman

Dear parents of non-disabled kids frustrated about school reopening plans,

Welcome.

COVID-19 school re-opening plans are challenging for parents. Maybe school has always been a safe and fun space for your child before this. Light and productive interactions with teachers got students exactly what they needed, and relationships with fellow parents were easy.

Now, everything is different.

Fear that school is not going to do what’s best for student learning, not having a way to appropriately interact with students or not having the right equipment to promote learning are new worries.
School is this weird mess of tech that may or may not work, and quick ins-and-outs of the building for check-ins, supplies, and visits are not guaranteed. Enrolling a kid in school now is a new and unpaved path to form relationships between educators, administrators and communities.

Parents are left to manage it all. Parents don’t know what to tell kids to expect. Parents aren’t sure where and when to push on administrators, school boards and teachers and when to back off. Parents don’t get immediate answers from schools or get answers they don’t like; answers filled with uncertainty or a “we’re doing our best” assurances.

Welcome to our world.

For parents of kids with disabilities, this uncertainty isn’t so new. Navigating a school system with a kid with a disability, particularly if you are not disabled, means you cannot really tell your kid what school will be like for them. You can never tell them with all honesty that it’s going to be okay and that school is a safe space for them. How would we know? We have never experienced school as a disabled person. And parents of non-disabled children have never gone to school during a pandemic, either.

Those of us who have children with disabilities are likely to have dealt with conversations of loneliness and strained relationships as a result of school policies before. We’ve been working around limited access to technology long before COVID. Not knowing what is around the corner for your kid, feeling like the school may not be doing what’s best, wrestling with feelings of anger or distrust at the district while still trying to show support when the school gets it right — we have been there. Knowing when to let your child handle school challenges with teachers, policies or course work on their own and when to jump in is not easy.

COVID has made the environment impossible for a school to operate as it did previously, affecting the majority of students now, not just a minority of disabled students. The majority of our kids are now subject to an imperfect environment and policies that are confusing. No one can function optimally in it.

Students with disabilities have been operating in an imperfect school environment for years. Parents of children with disabilities have been making it up since our kids entered school. But… we don’t have to operate by the old rules anymore.

Reopen, hybrid, full remote? Who knows? Can we start over? Let’s throw out what didn’t work & put new guidelines and expectations in place. Let’s bring in all the voices and perspectives so we are not continuing to ignore those who don’t always have a seat at the table. As everything is restructured, let’s consider students with disabilities alongside their peers right from the start, not afterwards like was done before. Now, with everything in flux, this is an opportunity for parents of children with all abilities to work together, look at what we were doing before & re-imagine how we can do it better.

The new school year is starting, and this one is going to be a doozy. With that in mind, we’re centering our blog posts this month on education. You might recognize our first featured guest blogger: Patty O’Machel is a writer, special needs advocate and mom who has been writing guest posts for Easterseals for years now.

Our New Normal – E-Learning

by Patty O’Machel

Patty (right) and her daughter (left)

The new normal is a challenge for everyone, not just parents like myself who are raising children with disabilities. And in this disability parenting club, I have found our new normals do not look like everyone else’s.

I know mine doesn’t!

During this past spring of online learning from home, I discovered so, so much about this girl I am raising: things that, prior to this, were hidden in her relationships at school. Her relationships with her teachers and her aides are incredibly special and she had surrounded herself with people who see her potential and made her thrive with independence.

She and I never had this relationship. As much as I try, I am always her safe place. Her person to reach for for help, even when she doesn’t need it.

We started that new journey with me making her cry several times a day, as I didn’t know the rhythm yet or the dance we needed to do. She would look at me with her big, brown eyes silently pleading for me to help her and I would get frustrated because I knew she could do it herself.

She is so smart, and so competent. I struggled for a way to change our mom/daughter relationship into the new teacher/aide/student one. Even with her teachers explaining over and over that her current straight A’s as a Freshman could not go down in this corona home learning situation, she still wanted to be at the table by 9:00 and work diligently to get every piece of work done — sometimes turning in work early. Some things I realized from all of this:

• • She is incredibly smart
  • She can do the work — if she would just see herself through the lenses of everyone around her
  • She LOVES to learn
  • She NEEDS to feel she has a purpose and that things are expected of her
  • She wants to use her brain
  • She is great at algebra and physics which she did not get from me!

By far the most important lesson I learned? That before this past spring, I’d been holding her back. I am holding her back. I should have asked more of her at home. I should have given her responsibilities like her siblings. I should have expected her to be a contributing member of this family. She wants and craves being needed like everyone else does.

E-Learning is long, and I have to write for her and sometimes type for her if her voice to text technology doesn’t work. I have to watch the teachers algebra and physics videos to understand even a bit of what she is trying to do. I have to go back and be a freshman in high school, and believe me, I never wanted to do that again!

But I have also learned to see my capable, smart, inquisitive daughter in a whole new way. So another win for this tricky time we are now living in.

As this new school year begins, Patty O’Machel is gearing up to bring her company, Educating Outside The Lines, to more schools through eLearning. Educating Outside the Lines promotes the idea that children with all abilities need to be accepted and seen for their unique gifts, as varied as they are. To see Educating Outside The Lines in action, this link has a short video of programming.

After years of being overlooked and disregarded, we’re going in the right direction: Diversity has become a buzz word this past year. When people talk about “diversity,” though, the conversation is often limited to ethnicity, race, religion and sexuality.

Let’s use the census as an example. Early this year, the U.S. Census Bureau expanded its massive multimedia advertising campaign on television, radio, newspapers, online – even billboards and bus stops. A press release claims the Census Bureau is “committed to reaching those people who are historically undercounted,” but if that’s true, where are the ads reaching out to people with disabilities?

The U. S. Census Bureau press release says they tested their 2020 ad campaign in over 120 focus groups in their target audiences across the country “to ensure relatability, understanding, cultural relevance, and language interpretation.” Link here to view Examples of 2020 Census ads. I could only listen to the ads — blindness prevents me from taking them in completely,so I might be missing something. So you tell me: are any of them directed to people with disabilities? Does the U.S. Census care if we respond? Do we matter?

In 2010, the official census form every American received in the mail was not available in an accessible format. People who were blind or had visual impairments were told to ask someone we know to help us fill out a census questionnaire, visit a Questionnaire Assistance Center where a paid Census Bureau staff member could help us, or call a toll free number that was available between 8:00 a.m. and 9:00 p.m. 7 days a week.

My husband can see, and he filled out the form for us in 2010.

This year I was able to fill our form out on my own. You can do so too by visiting https://my2020census.gov. The 2020 Census Fact Sheet reports that the 2020 online questionnaire follows the latest Website Accessibility Content Guidelines (WACG) and that Braille and large print guides can also be provided for those who prefer responding by U.S. mail.

Why do I care about all this? Why is it so important for me, a person with a disability, to be counted? Why do I want the government to think we matter enough to come up with an ad encouraging us to make sure we’re counted, too? Here’s why:

• Transportation. My community uses 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. I need all of those things to get around the city safely. The funding our state gets is based on census data. If I am not counted, that could mean less money for my city and state for these projects. I need to be counted.
• Health and Social Services. My state receives billions of federal dollars to support a wide variety of programs, including funding for services I use that are specifically for people with blindness and vision loss. I need to be counted.
• Representation. The number of people who respond in my community and state 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. I need to be counted.

After previously stating the census would run through October 31, last week the bureau announced it was cutting the count short by a month, moving the deadline for responding to the 2020 Census up to September 30, 2020. We may not be included in the U.S. Census Bureau’s ad campaign, but This year, while the world faces the impact of COVID-19, people with disabilities need to be counted. More than ever.