Action Items – CVI Momifesto

Adventures in Advocacy / A CVI Mom Goes to Capitol Hill Advocacy Day 2018

March 8, 2018March 10, 2018 CVI Momifesto1 Comment

Last week, I had the chance to join the American Foundation for the Blind (AFB) and CEASD (The Conference of Educational Administrators of Schools and Programs for the Deaf) in their efforts to advocate for the Cogswell-Macy Act. Cogswell-Macy (H.R. 1120, S. 2087) is legislation named after Alice Cogswell, the deaf child who inspired Thomas Gallaudet to introduce deaf education to the United States and Anne Sullivan Macy, Helen Keller’s gifted teacher.

Why We Need the Cogswell-Macy Act

From the AFB Website: Today’s schools are not prepared to help children who are deafblind, deaf or hard of hearing, blind, or visually impaired develop to their full potential. (Magnify this statement times 10 for children with a brain based visual impairment such as Cortical Visual Impairment. See my earlier post titled Lego Trees and the posts under Death by IEP.)

The Cogswell-Macy Act is the most comprehensive special education legislation for students with sensory disabilities to date.

This act seeks to expand the resources available to these students, and their parents and educators, through the Individuals with Disabilities Education Act (IDEA).

The Cogswell-Macy Act would –

ensure specialized instruction specifically for students who are visually impaired, deafblind, or deaf or hard of hearing.
increase the availability of services and resources by ensuring all students who are deaf or hard of hearing, blind, visually impaired, or deafblind are accounted for.
enhance accountability at the state and federal levels.
increase research into best practices for teaching and evaluating students with visual impairments by establishing the Anne Sullivan Macy Center on Visual Disability and Educational Excellence—a collaborative consortium of nonprofits, higher education institutions, and other agencies to provide technical support, research assistance, and professional development.

To learn more: http://www.afb.org/info/get-connected/take-action/12

AFB and CEASD can offer you much more detailed information about this bill.

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What I can do is give you the play by play of the novice parent advocate who lives near D.C. and wants to help.

WEAR COMFORTABLE SHOES. Someone told me this last year. I thought I wanted to look professional so I’ll just wear my most comfortable heels.
THERE ARE NO COMFORTABLE HEELS.

Image: A pair of black shoes with heels and a binder with pictures of a child on the cover

I call this photo “Waiting for Senator Warner 2017.” By this time of day (early afternoon), I was already barefoot in a Senate building and sporting some impressive blisters.

3. DO NOT WEAR HEELS. Did you not hear me the first time? I know, I know. It’s the Capitol and the heart of our democracy, but seriously. Look around, everyone who works there wears tennis shoes or flats to run from building to building. They must keep their uncomfortable grown up shoes in their offices.

4. When you feel smug about how early you got up to drive to the Metro and catch a train to go into D.C., don’t. I got to our local Metro station in ample time to catch a train to be at the Advocacy Training by 8:30 a.m. And, the train was “delayed.” I waited. Annnnnd, after 20 minutes the status of the train was now “suspended.”
And, I ran back to the parking garage (Vienna Metro owes me $5) and drove to D.C. See where the shoes come in?

Image: My view of Northern Virginia traffic from the windshield of my car

Image: The dome of the Capitol building in the distance taken from a side street

5. When you see the Capitol, look for parking. And, keep looking, because the concept of public parking in D.C. is a city version of snipe hunting. Sure, you can drive to D.C. and find easily accessible parking! Sure, there are snipe in them there woods! (My family hails from Kentucky so I get to use phrases like “them there woods.” Although no one in my family has actually used the phrase “them there woods.”)

Image: A line of people standing outside the Rayburn building in DC

6. FYI – When you find parking (snipe!), you will not get even close to the government building you need to be in RIGHT NOW. When you hustle (SHOES!) to get to that building (by now only a half an hour late), there are dozens of people lined up outside the entrance waiting to get through security. What the heck? It was not this hard to get in the building last year.

At least, standing in line, you have time to catch your breath, dab your sweaty forehead with a Kleenex, and curse yourself for not leaving even earlier in the morning.

Then, you get a text from Rebecca Sheffield, Senior Policy Researcher, Ph.D. from the American Foundation of the Blind. (This is just a cool sentence to type.)

The text says, “If you are still on the way can you go over to the Russell building for a meeting with Sen. Tim Kaine’s staff?” Some of the Virginia advocates had not yet checked in. I imagined them sitting on the same metro platform I had been waiting on.

This year, you are wearing good shoes so YES, Rebecca Sheffield!

You ask no less than 3 D.C. policefolk how to get to the Russell building. Normally you could have cut across in front of the Capitol but the Rev. Billy Graham was lying in honor there. There were barricades all around the building and another line of over a hundred people waiting to pay their respects.

You will pass the Supreme Court building. There is a line to get in there as well. D.C. is a just a buzz of activity! You will see Boy Scouts. You see high school students from Oakton, Virginia on a scavenger hunt. You see Americans and tourists of all sizes, ages, and colors. It is a beautiful power walk through D.C. in business attire.

Image: The Supreme Court building

You hoof it to the Russell building, one of several Senate office buildings and location of Sen. Tim Kaine’s office with roughly 8 minutes to spare. Success!

Image: Outside of the Russell building

You have just enough time to dab sweat again, look over the talking points on Cogswell Macy and find Sen. Kaine’s office. This building is a buzz of activity as well. There are groups of teenagers, flower growers from all over America dressed in suits with brightly colored corsages pinned to their lapels, other advocates and lobbyists moving in packs with their affiliations written on badges hanging around their necks. Everyone has folders of talking points and information to leave with staff.

For a brief moment, standing outside the office, you are nervous that you will flub something in your meeting. You walk past well dressed teens joking around in the hallways and wonder how long it took one young man to get his part that straight. You feel a pang of something – not regret – envy? – because you know your own little girl will not have a moment like this. These teenagers take in so much information about this busy place, about each other in a single second because they have normal vision. Because they can learn incidentally.

You think about all of the students throughout the U.S. who are blind, or deaf, or deafblind. You think about all of the children with sensory loss who are misunderstood in their classrooms. Children who lack ACCESS to their environment. You think about your own daughter and her diagnosis of Cortical Visual Impairment – information that inevitably produces the following response: “Huh?” – when you mention it for the first time.

You think about how many times you’ve tried to explain your daughter’s visual impairment. How it seems as though she is not paying attention or that she cannot understand because typically sighted folks do not know what to make of a child who does not look them in the eye and who takes longer to respond.

You think about the national shortage of Teachers of the Visually Impaired and Orientation and Mobility Specialists. You think about the lack of teachers and other providers who know what to do with a child with CVI. There is so much work to be done to give our children a better chance to connect with the world around them, to give us a chance to reach them. Frankly, you feel a tad overwhelmed.

You want to yell, “Oh, Senators, we need co-sponsors for Cogswell-Macy! We need champions for children with sensory loss. We need champions for children with CVI!”

You do not.

Image: Kirk Adams, a tall man with gray hair holding a cane, and Adrianna Montague, a woman in a black dress smile while standing next to a sign that reads Senator Tim Kaine of Virginia

7. You enter the senator’s office to jump into Advocacy Day (and decide to stop numbering your post that has gone on way too long and will be read by no one…).

With a flood of relief, you find Kirk Adams, the president of the American Foundation for the Blind, and Adrianna Montague, the Chief Communications and Marketing Officer for AFB, waiting for the meeting as well.

You meet with one of Sen. Kaine’s staffers, Karishma Merchant, who oversees education and other issues. Ms. Merchant is a willing audience and asks great questions.

AFB recently moved their main office from New York to Arlington, Virginia. Mr. Adams and Ms. Montague take this opportunity to introduce AFB as a resource for Sen. Kaine’s staff and to emphasize the need for legislation like Cogswell Macy. You get to tell her a little about the challenges children with sensory loss face in U.S. school systems.

Ms. Merchant asks your help to advocate against legislation that was introduced in the House to deregulate the Americans with Disabilities Act.

ACTION ITEM: H.R. 620 is what supporters in the House are euphemistically calling the ADA Education and Reform Act (H.R. 620). Don’t believe it for second.

Senator Tammy Duckworth of Illinois is leading the call to ask Senator Chuck Schumer and Senator Mitch McConnell not to bring forward H.R. 620 or any similar bill.

Calls to senators in Florida, Indiana, Maine, Michigan, Minnesota, Nevada, New Mexico, Oregon, Virginia, or Washington will have the most impact. (https://www.senate.gov/senators/contact)

You leave Sen. Kaine’s office hoping that you have earned another co-sponsor for Cogswell-Macy and prepared to help him advocate for all people with disabilities.

Then, you bid Mr. Adams and Ms. Montague adieu and wait for your next appointment with Sen. Mark Warner in the afternoon. You have time to jog back to your car and feed the meter.

Later, at the Hart Senate Office Building, for the meeting with Senator Warner, you will see this sculptural work Mountains and Clouds by Alexander Calder. The Hart building feels different from other senate buildings. Wikipedia tells me its architectural style is Modernist not Neoclassical like the Dirksen and Russell buildings.

Now you know for your next Adventure in Advocacy. If you see this sculpture, you are in the Hart Senate Office Building. Handy!

Image: Large black triangular sculpture that nearly touches the ceiling of the atrium of the Hart building

Image: Woman standing next to a sign that reads Senator Mark R. Warner / Virginia

At some point in the afternoon, you realize you’ve been taking pictures of places but very few pictures of people. You wish you had gotten a picture of the flower growers and their brightly decorated lapels, or the extremely straight part in that young man’s hair.

At Senator Warner’s office, you have a brief meeting with Lauren Marshall, the same staffer you met last year. She is attentive and kind. She promises to reread Cogswell-Macy and to bring it up with Sen. Warner.

That’s really all you can ask.

You walk away from the Hart Building hoping you have made some small connection within the Senate for children who are blind, or deaf, or deafblind. You know that these populations of children do not get a lot of press. You hope you can help spread a sense of urgency about the challenges facing children with sensory loss in the classroom.

You want senators, representatives, and anyone who affects legislation to understand two simple facts. These children matter. Their education matters.

At the end of the day, you hope you have made it easier for the next mom to reach out to her legislator to tell her story. That mom is going to make change happen for her child. She is a force of nature.

P.S. You make it back to your car in time to avoid a ticket. Success!

You see this poster at the Thai restaurant next to your car.

Pretty much sums it up.

Moms on Monday / Storytelling is dangerous

February 12, 2018February 16, 2018 CVI Momifesto1 Comment

“Storytelling is dangerous to those who profit from the way things are because it has the power to show that the way things are is not permanent. Not universal and sometimes, not even necessary.”

-Ursula Le Guin

Hello fellow families of delightful children who happen to be identified with Cortical Visual Impairment,

There are several mothers out there who have let me know that they are working on a post for Moms on Monday. Ladies, I thank you. I’m a mom and it’s Monday, so I’m going to invite you once again to share a part of your and your child’s story with us. When you have the time, of course.

As we all know, and as Dr. Roman-Lantzy frequently says, CVI Moms are the busiest people we know.

We are the busiest people she knows because we are working tirelessly to get our children acknowledged and accommodated in a system that is not built to acknowledge or accommodate them.

The way things are is exhausting and discouraging.

I hope to gather as many stories as possible as a resource of personal experiences for families. Every story is important. Please know that there are no wrong answers. You can write something original, or you can use the questions in the Calling All CVI Moms post as a starting point. You can help another parent just by allowing your voice to be heard and allowing your child to be seen.

There is another reason for collecting stories.

As the writer Ursula Le Guin reminds us, the way things are is not permanent.

Not universal and not even necessary.

Let that percolate for a minute.

The way things are is not permanent.

Not. Universal.

And

Not. Even. Necessary. (This is my favorite part.)

We have a unique ability to assess the shortcomings of the systems we are fighting. (Did you ever think you’d be an expert on neurology, ophthalmology, neuroscience, & methods of teaching children with sensory loss? Me neither.)

From our shared experiences, we have the ability to imagine a better way and to work towards a “Way things are” that recognizes and provides for children with CVI.

Our stories will become a spotlight on inefficient, outdated methods of data collection and a tone deaf educational system. Our children matter. They need to be counted. They need to be taught, actually taught. (ACCESS! They must have access! They are not incidental learners! Sorry, I just had to get that out.)

As CVI families begin to advocate, they will find themselves in the offices of their elected officials and speaking in front of school boards. When CVI families begin to advocate, they may feel as though they are fighting an uphill battle (yep) and that they are alone (NOPE).

The methods of keeping track of our children on local, state, and even the federal level are woefully inadequate. States vary in their expectation of counting children with special needs, and CVI does not even make it on the list of many states. It is still called “Cortical Blindness” in many places. We need to change that.

If the children are not identified, and not accounted for, then the funding necessary to provide resources will not be included in your state budget or the federal budget.

There are plenty of state legislators who will not want to give you the time of day because you and your story represent more expenses in your state’s government. That is just too bad because it’s your budget too. You live in and pay taxes in your state. Heck, you vote! (Please vote.) Your friendly neighborhood legislator needs to meet with you, a friendly neighborhood constituent.

Here’s an example of the power of storytelling.

When we moved to Indiana, Eliza was 2 years old. She had one more year of early intervention. She was globally delayed. We qualified for several therapies, occupational, physical, speech and developmental therapy. I was so grateful to have access to these services. I knew, however, that her lack of usable vision was going to affect how useful all the other therapies were, so I asked about early intervention for vision loss.

I was directed to the Indiana First Steps matrix – the database for all of the providers in the state. When I entered “visual impairment,” the name of an Optometry professor at Indiana University came up.

One name.

For the entire state.

And, the description mentioned making an appointment to come to his office to have your child assessed for glasses. Not home visits. Not early intervention.

What about the children who were blind? Or, who, like Eliza, were legally blind due to Cortical Visual Impairment and who needed to be taught to see?

I asked around and was referred to the Indiana State School for the Blind and Visually Impaired. I was able to set up an appointment with the Outreach TVI who came to my house to meet Eliza and me a few weeks later. She was the most wonderful and experienced TVI. She knew about CVI. She understood the lack of access and calmed my fears. She gave me several articles and showed me some ways to interact with Eliza that had not occurred to me. She stayed for over 2 hours.

My prayers were answered.

I asked to schedule our next appointment.

And, I discovered that this wonderful TVI had a caseload of over 300 children.

One teacher was the entire early intervention team for infants and toddlers who were blind or had severe vision loss. She drove around the state staying as long as she could, providing everything she could in the very limited time and with the very limited resources available to her. She knew it was not nearly enough. What she provided was what the system would allow.

It was just how things were.

By the time she could see Eliza again, Eliza would have aged out of early intervention.

How was that okay?

To make a long story a tad shorter, I eventually found myself testifying before committees at the Indiana Statehouse about the lack of early intervention for infants and toddlers with vision loss. I poured my heart out about how hard it had been to have a baby I could not reach while some committee members chatted or got up and left. (Not all. Some were very receptive.) I had meetings with state representatives who did not crack a smile the entire time I sat across from them. It was easy to walk away from these experiences and think that nothing would change.

I also had meetings with state representatives to vowed to work with me and did.

statehouse

Image: Three women seated around a table. Annie Hughes and Rebecca Davis meeting with policy staff at Indiana Statehouse.

Over time and with the help of Indiana State Senator Mark Stoops, and his brilliant policy director, LeNee Carroll, Indiana made changes to its Birth Defects Registry (worst. name. ever.). We got CVI and visual impairments added. We were able to advocate for and to build a system of early intervention services specifically for children with vision loss.

We (that wonderful TVI, Annie Hughes, an agency called Visually Impaired Preschool Services, and a group of kickass families) changed the way things were.

It can be done.

After your interaction with the cranky legislator who does not want to fund more services for children with special needs, you can tell Rep. Cranky to go to CVI Momifesto to meet more parents of children with CVI and to learn more about what they have gone through. The stories here can provide back up.

There is more back up on the way. 2018 will indeed be a turning point in the awareness of CVI. Many CVI moms are working to make sure of this.

You have the power to change the way things are.

gals

Image: Three women standing with arms linked. Meredith Howell (CVI Mom) and Annie Hughes from VIPS Indiana, and Rebecca Davis

Adventures in Advocacy / Anger & Courage

January 21, 2018February 28, 2018 CVI Momifesto2 Comments

Hope has two beautiful daughters; their names are Anger and Courage.

Anger at the way things are, and Courage to see that they do not remain as they are.

-St. Augustine of Hippo

I heard this quote during a presentation a couple of weeks ago. I really needed it this week.

It was a week of preparation for the next round of IEP meetings for my daughter. As is the new (ab)normal at times like this, I feel overwhelmed, underprepared, and anxious about what comes next. Every time we go over a new report, we have to compare it to the old reports and I am reminded of what I didn’t know then and then I wonder how much I just don’t know now. It’s very busy in my head right now. Reading over past notes and goals I disagreed with leave me frustrated.

I feel like a clenched fist with hair.

(And, nothing else gets done. Laundry? Groceries? You mean we still have to wear clothes and eat? Haven’t you people done that enough already? There are reports to read, questions to ask, and schools to visit, dang it!)

Thankfully, it was also a week in which I was able to participate in a conversation with a group of mothers and a dynamic TVI. These ladies are determined to make 2018 the year we DO something about CVI on a grand scale here in the U.S. Listening to the passionate ideas coming from them made me smile and left me with more than a little more optimism than I had that morning.

Now, I feel like a clenched fist with hair and optimism.

This past week, while preparing for the uncertain transition facing my family, I also found myself impressed with the resolve of the CVI families’ growing efforts to raise awareness and to change the current systems of service for our children.

You could say I was living between Hope’s two beautiful daughters if you wanted to be particularly cheesy and need to find meaning in everything you read or hear. I am particularly cheesy. I do obsessively look for meaning in everything I read or hear (I wrote the St. Augustine quote on my hand so I wouldn’t forget it, for Pete’s sake. Now I’m wondering – shouldn’t it be that “Hope has two beautiful parents”? Wouldn’t that make more sense? That Hope is the result of Anger and Courage? Will I be struck by lightning for questioning a saint? Probably. I warned you it gets busy in my head. My apologies to St. Augustine.)

As the mother of child with multiple special needs and a vision processing disorder few people understand, I am familiar with anger.

The fundamentals we want for our children are that they are protected, capable, and educated to the best of their abilities. Easy enough, right? (Cue the hysterical laughter. I’ll wait while you catch your breath.)

For parents like us, this includes the extra full time job of raising awareness and educating everyone we come into contact with that – say it with me – CVI is the #1 pediatric visual impairment in First World Countries.

If you are familiar with anger as well, WELCOME. You are in good company.

Anger is an energy. (My apologies to Johnny Rotten.)

Anger is a building block for Hope.

There is plenty to be hopeful about.

Conversations are happening between families and agencies in the blindness community. These families are acting straight from the heart out of the all too common mixture of love and frustration we feel as we force the world to recognize Cortical Visual Impairment and our children.

Soon, there will be a need to ask for more families to reach out, to ask questions, to make themselves and their stories known.

This growing group of parent advocates and TVI will be asking you to join us. We will need you to reach out to agencies, legislators, and others to educate them about CVI, to let ourselves be counted, and to let them know that our children matter.

We will provide the information you need to feel well-equipped to share your stories.

I hope you will allow yourself to be included.

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This is where the courage part comes in.

You may not think that you want to be someone who will stand up and be counted.

I think that you already are.

Brene Brown, the author and research professor widely known for her work studying courage, vulnerability, empathy, and shame, describes courage this way:

“Courage is a heart word.

The root of the word courage is cor – the Latin word for heart.

In one of its earliest forms, the word courage meant “To speak one’s mind by telling all one’s heart.”

“Speaking from our hearts is what I think of as ‘ordinary courage.’”

As a CVI parent, you operate from the heart every. single. day.

Every time you make the attempt to educate a doctor or a teacher about CVI, you are speaking from your heart, You are being courageous.

And, you are making it easier for the mom who will come after you.

Reading this post, researching online, following FB conversations, making D-I-Y materials to accommodate your child’s level of vision – all of these activities come straight from your heart. Through love, you perform acts of courage every day.

Join us as we speak from our hearts, taking our ‘ordinary courage‘ to a wider audience.

ACT of COURAGE/ ACTION ITEM:

Send your contact info – Name, Email Address, and State to info@cvimomifesto.com.

Your information will go on a growing list of families facing the same challenges. The information will not be given to any other agencies. This is a mom fueled project. We will use the information to keep you updated on future opportunities to advocate.