Moms on Monday / Storytelling is dangerous

“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Our stories will become a spotlight on inefficient, outdated methods of data collection and a tone deaf educational system.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

 

 

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CVI Momifesto

CVIMomifesto is a blog dedicated to parent advocacy and community for families of children with Cortical Visual Impairment.

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