Up and Moved, Part 2ish

Good morning fellow families of perplexing yet adorable children who happen to have Cortical Visual Impairment among their list of diagnoses…

If you have been following this blog for any length of time (a super-sized cup of gratitude to you), you may have noticed that there hasn’t been much activity over here at CVI Momifesto over the past few months.  You may know from the post Up and Moved, Part 1 of ? that this is largely due to the fact that moving is like throwing your life into a blender.  This is also due to the fact that immediately after moving I started a new job and any remaining time left in the week has been spent filling out forms to secure medical and educational support for my complicated kid, and occasionally – if absent mindedly – patting her older sister on the head.

Sometimes, for fun, I do laundry.

Sometimes I think, “Oh!  That would be a great blog post!”

Then I go home where we are still living out of boxes and think, “Oh! My house looks like a particularly tragic episode of Hoarders!”

And everything just sort of spirals downward from there.

From a vision standpoint, being surrounded by clutter I haven’t been able to sort through yet really drains and distracts me.  I am a typically sighted person.  My experiences in this move have heightened my awareness of CVI and the amount of energy it takes to process visual information.  Bonus: the extra helping of guilt that I can’t get a handle all of the piles of stuff fast enough to create a more accessible living arrangement for Eliza.

We haven’t been able to find the services we need to make our lives work here so it’s ALL ELIZA ALL THE TIME!  And, it’s a new home, new routines (or lack thereof), new school, new doctors, new transportation and so on.

This is not a kid who thrives on change. So, moving, introducing new – well – everything AND having her first (severe) exposure to poison ivy wasn’t the best way to introduce her to Smassachusetts.  It was, as they say in the South, a hot mess.  Heck, it wasn’t even a hot mess.  It was a lukewarm, stale mess.

At a 3 1/2 hour IEP in December, one of the school staff commented that it was as though Eliza was “shell shocked” for the first month or so when she started school.  The stricken look on my face made her scramble to come up with a new description, but I understood.  I felt that way too.  I feel that way most days even when we haven’t just moved.

Proud parenting moment though.  Who among us doesn’t want to have their child described as “shell shocked?”!  #Winningatthismomthing  

(Random Mom side note: I have been informed by my teenager that no one uses hashtags anymore.  My last desperate attempt to relate to you whippersnappers has failed.  #cronelife )

Speaking of school – I’ve used the phrase Death by IEP to describe my feelings about the marathon meetings we have had with educators and administrators in – oh, how many is it now? – 5 states in 12 years?  Argh.  I do not recommend trying this at home by the way.  Leave it to the professionals.  

The phrase still applies.

IEPs.  Boy, have we had ’em.

I had hoped that an appropriate school placement would be easier to find here.  The school district we moved into had other plans.  Oh, they could accommodate her alright.  But, she couldn’t start school with everyone else.  She sat at home with me for the first week of school, in the sad episode of Hoarders, clinging to me as though she was about to fall off a cliff.  This meant I had to delay starting a new job.  Bills?  Who needs to pay bills? 

And, the school administrator wasn’t sure about transportation but he would get back to me in a few weeks or so.  Because who really needs specifics about when and where your non-verbal child is being driven in a vehicle with people you’ve never met? 

And, in those weeks when he’s getting information, she’ll just get up and walk the 3.7 miles while I go to work.  Right?  Oh, the confidence we felt in this new situation. 

And, we had a surprise visit to the emergency room on Halloween after the tubing in her g-button broke during a g-tube feeding at school. (On the plus side, I now know a lot more about what kind of nurse/student ratio our kids need AND I’ll share.) 

FAPE:  Free and Appropriate Public Education at it’s best.   (If you thought you heard a soul shattering primal scream during the first weeks of September and again on Halloween, you did.)

And, there is so much more, but we have had hours of meetings, hired an advocate and are using the proper channels and so forth….

Let’s just say that this photo borrowed from the interwebs accurately mirrors my feelings about so many things regarding this move, but especially, our school experience thus far.

top09-kellyclarkson.

Photo:  Steve Carell in the film, The 40 Year Old Virgin, screaming after his chest hair has been waxed.  My apologies to Steve Carell and Kelly Clarkson

Never fear, gentle readers and fellow families, I am bent but not broken. I am overwhelmed but not smothered.   I know that Eliza has untapped potential.  I am determined to get her where she needs to be.  I am determined to find the people who can teach us both how we fit in this world.

Some days I don’t feel as though I am up to the task. Especially when Eliza’s sleep patterns revert to what they were when she was a toddler who never slept.  Never. Slept.  When every muscle aches to the core and I can’t keep my eyes open but the laundry never takes a day off.  When I want to write something but there are dozens of pages of applications to fill out.  When I’ve spent the last 3 days sleeping on the floor outside her bedroom to curb her nighttime roaming.  When all of this happens I have learned that it is okay to sit and feel what I am feeling without judgement.

Then, I take a nap in my car.

Also, I find that a little primal screaming and dark humor can help me find my way. Sorry, Kelly Clarkson.

I  have faith that I will find a team of folks to help us.  I have done it before.  I also realize that it can take up to 2 years to find the right therapists, caregivers, doctors, and – yes – school placements.  It is the perpetual jigsaw puzzle that is our life.

If you are the parent of a child with special needs, I’ll bet you can’t relate to this.  AT ALL.

 

 

 

 

 

A School District Tackles CVI – Fairfax County Public Schools

Hello fellow families of lovable children who happen to have cortical visual impairment,

In a previous post, I mentioned that, across the United States, more parents are educating themselves about their child’s diagnosis of CVI.  They are taking their research into their IFSP and IEP meetings. They are asking their school districts how a child with CVI will be accommodated in the classroom.

Parents receive a wide spectrum of responses to their questions.

(And, I hammered this home with a tortured analogy from West Side Story.   Sometimes I have to make sense of things through musical theater.  Everyone has their thing.  Don’t judge. 

west side story pairImage:  Tony and Maria from West Side Story singing Somewhere (technically she’s lip-synching) 

There’s a place for us….children with CVI to be educated in the manner in which they can learn because they can learn…..SOMEWHERE a place for ….children with CVI.  Aren’t you glad I didn’t dredge that up again?)

As a direct result of the advocacy of parents in their individual IEP meetings, some school districts in America are recognizing CVI as a common diagnosis (#1 pediatric visual impairment –  Can’t miss an opportunity to throw that in.)  and as an obstacle to a child’s access (our favorite word) to a Free and Appropriate Public Education.  In fighting for their own children, these parents are improving education for all of our children.  It does not happen overnight, but there has been significant progress since I began looking for like-minded parents a decade ago.

It’s important for families to know that there are school and district administrators who are open to listening and to learning.

(There is a troubling issue with special education administrators.  Did you know that special education administrators do not have to have a background in special education to hold their positions?  Special education is a term which covers a wide variety of diagnoses and educational approaches. One would think that an administrator in this field would need more expertise to represent the students in their district, definitely not less. When I learned this, I wondered if this isn’t one of the reasons so many families feel like they are hitting a brick wall when they ask for teachers and staff to be trained in educating children with CVI.  Something to consider.)

Kudos to the administrators who acknowledge the challenge of educating children with CVI and who take action to train their staff.  This is new territory. They are leading by example.

Speaking of examples, Fairfax County Public Schools, the largest public school system in Virginia, has made a significant commitment to training teachers about cortical visual impairment through the Perkins-Roman CVI Range Endorsement.  

Dr. Irene Meier is the Director of the Office of Special Education Instruction for FCPS.  Two years ago, when parents met with Dr. Meier to give her information about cortical visual impairment and its impact on student learning, she was curious to learn more.  She recognized the need for specialized training to work more effectively with children with CVI.  She and Dr. David Lojkovic, Educational Specialist for Adapted Curriculum, worked with Perkins to provide FCPS teachers training through the Endorsement program.

When recently asked about the training, Dr. Meier responded:

“Our collaboration with Perkins and the feedback from the teachers was a very positive experience. We plan to continue to offer access to these courses next school year.
Over the course of the past two years, FCPS has been fortunate to participate in training, provided by the Perkins School for the Blind, that has advanced the skills of our staff who are working with students with cortical visual impairment (CVI). 21 FCPS teachers have taken either graduate level or advanced level courses, with several in that cohort pursuing the specialized endorsement in cortical visual impairment.

The feedback from teachers has been extremely positive.
Participant quotes: “I like taking Perkins’ classes because they’re structured, but flexible.”
“The assignments are challenging, but not too challenging.”
“The work we do in the classes can be directly applied to practice.”
Survey results show that teachers appreciate the opportunity to learn more about assessment with the CVI range and have used skills learned from the coursework with students that they serve. Furthermore, teachers indicated via survey that they were engaged in the coursework and felt encouraged to try strategies learned.
85% of participants in the coursework indicated that they learned new information as a result of taking the course.”

french-pith-helmet-big-head-version

Image:  A pith helmet

For her willingness to address the challenges of educating children with cortical visual impairment, CVI Momifesto would like to offer Dr. Irene Meier our first honorary Pith Helmet of Gratitude for helping parents of children with CVI forge a new path, blaze a new trail, if you will, in special education.

So, fellow parents –

if your child has been identified with cortical visual impairment and you are getting a lot of pushback from your school district when you ask for accommodations, modifications, and educators trained in CVI,

if hours of IEP meetings have worn you down so that you start to doubt yourself,

if you start to wonder if your request for your child to have access to her education is even possible,

remember that there are school districts, there are administrators, there are teachers who get it.  They are working with parents.  They are learning how to work with our children.

A question you may ask your school district might be, if Fairfax County can do it, why can’t we?

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P.S. If you know of a school or a district that has risen to the challenge of working with children with CVI, let us know at Info@cvimomifesto.com so we can spread the word!

 

 

 

Somehow, Some day, SOMEWHERE!

IEP season is coming to a close in my neck of the woods.  It has been intense.  We hired an advocate for the first time in Eliza’s educational journey.  I am glad we did.  For the first time, I didn’t have to say much during the two meetings (4+ hours) we’ve had so far. It was a revelation.  And, I didn’t know what to do with myself.

Nothing has been finalized for us, but, the awareness that we have someone else on our team who speaks the school district’s language and understands how to articulate our goals for our girl is a gift.

We are going into overtime, people!  Summer sessions!  I still don’t really understand what that means, but I think our advocate does.

Aside from our personal experience, I have been curious about how other parents of childen with CVI fare during an IEP season.  I did some reading.

I found this timely quote from the book, Vision and the Brain:

“As professional understanding of CVI increases,

it will be incumbent upon medical and educational systems internationally to explore ways to best provide services to the full spectrum of affected children.

This collaboration may lead to

additional, mandatory training for specialists,

reconsideration of guidelines and regulations for entitlements to services related to visual impairment,

and

reconfiguration of educational environments to accommodate, as part of universal design, the learning needs of this population.”

Dutton and Lueck, Vision and the Brain – Understanding Cerebral Visual Impairment in Children, (Introduction xix)

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I wondered –

If professional understanding of CVI is increasing –

and we CVI savvy parents, therapists, educators, and ophthalmologists are doing everything we can to get professional understanding of CVI to increase-,

Then what is happening in terms of

additional mandatory training for specialists,”

reconsideration of guidelines and regulations for entitlements to services related to visual impairment,”

and

reconfiguration of educational environments to accommodate… the learning needs of this population“?

 

I asked a lot of questions to moms on FB pages. I called a few of them. Several of the moms were kind enough to write me back or take my calls. And, these are busy ladies. I emailed a couple of organizations to ask about how they are addressing the increase in referrals of children with CVI.

This is just one random mom’s curiosity about how other people and places address the challenges our family faces.

There was a wide variety of experiences.

Worse case scenario:  I was able to sit in on a due process hearing (about which I can say very little).  Due process hearings are where you end up if you come to an impasse with your school district.

Best case scenario:  There are some districts and areas of the country that are acknowledging CVI and, better yet, acknowledging the need to learn how to teach children with CVI.

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Worse case scenario:  This IEP season, I sat in on a due process hearing for a family who has fought for years  to have their daughter included in a classroom with proper accommodations for her diagnoses of CVI and hearing loss.

Four hours later, I had developed a tic under my right eye and drawn a binder full of unflattering renderings of the school district’s opposing council – a school district which has put this family through 7 levels of Hades over several years.  The hearing went on for three more days.

I was frustrated for my friend and her daughter.  I have spent time with this bright eyed girl and seen how she has learned to communicate.  As a matter of fact, it was meeting her that renewed my hope that Eliza could learn to communicate.  Because – in spite of odds that would curl your hair (my Appalachian grandma’s saying) her mother would NOT give up hope.  She educated herself about cortical visual impairment.  She sought out experts.  She created a learning environment and trained providers to serve her daughter at home while she fought the school system for appropriate placement.

In the conference room, I sat and listened to words.

 

Complicated children.  Medically fragile children.  Children with sensory processing disorder/sensory needs/sensory loss.

Words that sound frightening and complex.   Words that sound impossible to overcome.

Then, I started counting ceiling tiles because the words were too close to my own experience …. 1,2, 3…).

What about the common word in these phrases – children?

Children.

They are children first and foremost.

The word – the child – can get lost in the diagnoses, in the assessments and evaluations,  in the IEPs and the litigation.

(…68,69,70….It was easier to count tiles than to follow the legalese.)

This is a child.

This is a child who can learn.

This is a child who is motivated to learn.

The sparkle in her eyes, the way she claps her hands to say “yes” in response to a questions, the way she laughs when she chooses her favorite toy, the fact that after years of physical therapy, she is becoming strong enough to stand on her own, these are details which should be celebrated.  These are strengths we can build on.

Personal details get lost in testimony.  “Sparkle” doesn’t translate very well to the courtroom.  Nor do the hours of trial and error to teach a communication system, or to systematically teach a child to use her vision.

How can you get stern faces to understand the joy you felt when she answered a question for the first time?  When she learned to say “yes?”  What that means for her cognitive ability and her potential to learn?

And, if I felt that way in one afternoon, I cannot even imagine what her mother felt in 4 days of testimony.

She was so polished and poised.  She explained in measured tones about her daughter’s challenging medical history.  About her family’s tireless efforts to teach their daughter when school placements beginning with preschool failed over and over again.

(1001, 1002, 1003….)

This mother is looking for a place where her daughter can learn, where she can belong.

It’s just that simple.

Maybe not easy, I’ll grant you that.  I live it.  I get it.

But simple.  And, do-able.

And, the attorneys argue about dates and emails and who did this or didn’t do that.

I cannot talk about what they discussed or what was decided.

It is all so painful and absurd that I had to go to my happy musical theater place.

Boy, if there was ever a place that needed a musical number, it was that conference room.

Listening to the debates and the arguments, I began hearing the song “Somewhere” from the movie West Side Story.   The song is performed by the star-crossed lovers, Tony and Maria.  Maria’s part was sung  by someone who was not Natalie Wood but lip-synched by Natalie Wood (because, in 1961, actresses of actual Hispanic origin were cast only as chorus dancers or Rita Moreno – who nailed it!  Bear with me here. There is a point.)

 

Cue the orchestra: Sing – um-, lip synch it, Natalie!

west side story pair

“Theeeeeere’s aaaaaaaaa   plaaaaaace for us.  There’s a place for us. Somewhere a place for us.” 

That’s what we are looking for humorless suit people who wield too much power over a little girl’s education.  If you truly understood what this girl, what her family has been through -if you truly understood ACCESS–argh.  I can’t say anything… but no one said anything about SINGING….

SOMEWHERE

A PLACE FOR US
PEACE and QUIET (and no bickering attorneys and stern faced judges) and OPEN AIR
WAIT FOR US 

SOMEWHERE

Somewhere a place our children can be taught in the manner they can learn by educators who believe they can learn.

A place for us.

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This IEP season, I spoke to other mothers who took the time to comment on the challenges or successes they were facing in their attempts to get their children ACCESS to a Free and Appropriate Public Education.  Several of them wrote posts for CVI Momifesto.  They are teaching the rest of us as they fight for their children.

The following conversations are happening in conference rooms in schools all over the country as

more and more children are identified with cortical visual impairment

and as more and more parents ask school districts how they will accommodate their children:

 

“We aren’t mandated by law to learn about CVI.” – Educator in Florida
“But, you are required by law to teach my son” – CVI Mom in Florida

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“You want us to fix your child.” – Educator in Indiana

“She doesn’t need to be fixed. I want you to believe you can teach her. I want you to teach the way she can learn. ” – CVI Mom in Indiana

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“We are past tears here.” – CVI Mom in New York discussing the extensive list of accommodations she insists are in every draft of her son’s IEP

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What I see in the examples from a due process hearing and from conversations from IEP meetings is that

school by school, meeting by meeting, family by family, mom by mom –

momentum is building.

(Oh my gosh, it’s MOM-entum!   I just blew my own mind.)

Parents are educating themselves about CVI and demanding to know how the education system will accommodate their children.  

west side story

Image:  A dance scene from West Side Story.  Women and men in colorful dresses and suits with one arm raised.

I will post more on the places where school districts and organizations supporting the blind and visually impaired are taking the necessary steps to improve how they identify and how they accommodate children with CVI.

THIS IS REALLY HAPPENING IN SOME PLACES IN THE U.S.!  SOME PLACES IN THE U.S.  CVI PARENTS DON’T HAVE INDENTATIONS ON THEIR FOREHEADS FROM BANGING THEIR HEADS INTO A BRICK WALL OF IGNORANCE AND LOW EXPECTATIONS.

“SOME HOW, SOMEDAY, SOMEWHERE!”

Let’s dance!

For now though, I have to be at a 6th and 8th grade graduation in – oh dear – 4 hours.

 

Adventures in Advocacy / Get To Know Them Before You Need Them

Hello fellow families of children who have CVI and deserve a free and appropriate education (FAPE!),

As you blaze your child’s personal trail in your local school system, I hope it is an easy trail to blaze.

I hope your school has ample educators who have heard of Cortical Visual Impairment. I hope these educators (and support staff) understand how children with CVI are NOT incidental learners (See blog post on Incidental Learning if you are unfamiliar with this term. It’s important.)

I hope your child has access to a Teacher of the Visually Impaired who is a Perkins-Roman CVI Endorsee.

I hope that TVI has a small caseload and can devote the time it takes to train your child’s educational staff and to modify the materials your child needs to have ACCESS to her curriculum and her school environment.

While I’m hoping, let’s just add a Certified Orientation and Mobility Specialist (COMS) who is also a Perkins-Roman CVI Endorsee.  And, let’s hope that COMS also has a small caseload of students and ample time to help your child navigate and make sense of her physical environment.

I hope your child’s teacher and support staff have ample time to make and modify materials since your child needs to have ACCESS to learning on a daily basis… like any other child.

I’m going to go out on a limb and say that my hopes haven’t been realized yet.

For the sweeping changes in educational policy that need to occur for children with cortical visual impairment to finally have access to learning, parents will need to reach out to legislators at all levels of government.

Talking points:  

  • There is a national shortage of teachers of the visually impaired.
  • There is a national shortage of Certified Orientation & Mobility Specialists.  (You may have to explain what that is.) 
  • There is a national shortage of teachers trained to teach the children with the #1 pediatric visual impairment in America, Cortical Visual Impairment.  (You’ll definitely have to explain this one.)
  • For children with Cortical Visual Impairment, vision can improve.  It is absolutely critical that children get diagnosed early and receive early intervention services from providers who understand CVI.
  • Many states do not provide vision-specific early intervention for infants and toddlers with vision loss, including Cortical Visual Impairment.
  • Our children cannot wait any longer for our education system to catch up to CVI.

Visiting your local school board meeting and asking them about shortages of teachers of the visually impaired and a lack of educators trained to work with children with CVI can get the ball rolling.  It can start an uncomfortable conversation, but it’s a conversation that needs to be started.

It will require sitting through school board meetings, but, as a CVI parent, you have sat through far worse experiences.  (Just a guess. For me, it was Eliza’s “sleep” studies or, more accurately,  “cranky-all night-Mom-wrestling sessions.” ) 

Mark Richert, Director of Public Policy at AFB (American Foundation of the Blind) has a couple of suggestions for parent advocates. 

Find your representatives and reach out to them before you need them.

Some folks don’t know who their local, state, and federal officials are.

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https://openstates.org

This site can help you locate your state representatives.

https://www.govtrack.us

Govtrack will help you locate your federal representatives.

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Open a line of dialogue with the people who work for your local representatives.  They are moms and dads just like us.  They care about children.  They care about their constituents.

Before a big “ask,” it is a good idea to get to know your officials and the people in their offices.

You can can call their local or D.C. offices and ask to speak to the staffer who works on special education issues.  Then, introduce yourself and mention a few talking points, or read from the example below.

An example email:

Dear Sen. Washington, 

I am one of your constituents.  I appreciated ___________________________  (something positive about your representative’s work). 

I wanted to take a moment to reach out to you to tell you that I am the parent of a child with special needs and vision loss.  My daughter has cortical visual impairment, the #1 pediatric visual impairment in America.  

(You can share more of your personal story and include a picture.) 

I wanted you to know that issues surrounding the education of children with special needs and sensory loss are very important to me and my family.  

I hope we can count on your continued support of our children.  

Thank you for your service, 

Thomas Jefferson

Someone from the office will write you back.  Then, you have a contact.  You can direct future issues and questions to this person.  If you are going to be in town, you can request a visit with your representative.  By establishing a relationship, you are laying the foundation to effective future advocacy.

(Sidenote:  You may think it takes a lot of people emailing about a topic to get someone’s attention.  Not so.  When legislators get more than 3 emails or phone calls about one subject they take note.  Every call, every email counts.)

When you are emailing your child’s educational team, cc: your senator, representatives, etc…

Mark suggested cc’ing your elected officials on emails regarding your child’s educational experiences.  This can help our legislators understand the scope of what we are facing when our children with CVI enter the school system.  It will certainly get the attention of your educational team.  I haven’t done this yet.  If you do, let me know what happens.  I’m intrigued.

P.S. I’ve heard that it’s better to take taxis rather than Uber or Lyft when you are going to advocate on Capitol Hill.  Taxis are plentiful in D.C. and street addresses are tricky.  It can be hard for an Uber or Lyft to find you.

fight win!

Image: Edna Mode from The Incredibles stands with her arms above her head and yells “Go! Confront the problem! Fight! Win!”

Adventures in Advocacy / AFB’s Advocacy Call to Improve Special Education for Children with CVI

It happened!  History was made!

Yesterday evening, March 14th, at 8:30, the American Foundation for the Blind hosted a panel of parents, educators, TVI, administrators of teacher training programs, and advocates to engage in a “spirited” national conversation concerning Special Education of Children & Youth with CVI.  (I am deliberately using the initials CVI since AFB referred to the diagnosis as “Cortical Visual Impairment – what others refer to as cerebral visual impairment, and still others describe as neurological visual impairment.”)

Our moderator, Mark Richert, Esq., diplomatically came up with the following title for the call:

CVI = Consensus, Vision, and Initiative 

As a parent, I have said before and I will say it again. I do not care what you call this diagnosis.  You can call it, “Harold,” or “Pearl,” or “Jeff.”  This attitude may seem flippant to researchers and educators and it is.  CVI has lorded over our lives for over a decade and I’m not great with authority figures.

I care about finding the teaching methods that give my daughter (what?….Say it with me, folks!)  ACCESS to her environment.

climb-on-bus.pngImage:  A child wearing a backpack climbs on a school bus

My dream is that one day my daughter will get on a bus and go to a school where the teachers know more about CVI than I do.  My dream is that one day I won’t have to worry about what is happening at school all day.

Is this likely to happen anytime soon? No, it is not likely to happen anytime soon.

But, I have to try.  For Eliza.  For every other child.  For every other mom.  I believe I can say the same for the other parents who are advocating in their personal lives and the parents who participated in last night’s call whether as a panelist or a caller.

Mark Richert gave each panelist a chance to speak.  He made every effort to give callers a chance to comment or ask questions.   This turned out to be a bigger task than expected as AFB had nearly 200 people call in.  I don’t have the exact numbers but at last count we heard the AFB folks say 175 people wanted to participate in the call, both panelists and callers.


 

The panelists included:

Brenda Biernat – CVI Parent, Advocate, and Founder of StartSeeingCVI.com (and the mom who reached out to AFB to make this call happen.  Bravo!)

Rebecca Davis – CVI Parent, Advocate, Member of the Pediatric Cortical Visual Impairment Society & Blogger at CVI Momifesto

Sandra Lewis, Ed.D – Coordinator and Professor, Visual Disabilities Program, Florida State University

Amanda Lueck, Ph.D – Professor Emerita in Special Education, San Francisco State University

Rona Pogrund, Ph.D – Professor and Coordinator of Programs for Teachers of Students with Visual Impairments, Texas Tech University

Dorinda Rife, CLVT, COMS – Vice President, Educational Services and Product Development, American Printing House for the Blind

Christine Roman-Lantzy, Ph.D – Director, Pediatric View Program, Western Pennsylvania Hospital

Diane Sheline, TVI, CLVT – Independent Consultant for Students with Cerebral/Cortical Visual Impairment

Alisha Waugh, COMS – CVI Parent and Physical Therapist


 

It was a passionate conversation.  I, for one, appreciated the fact that the professionals in the field of educating children who are blind or visually impaired were willing to listen to us and to each other.

Listening is an important first step.

We parents do have a lot to say.  We have been waiting a long time for Cortical Visual Impairment to be taken seriously in the educational community.  Many of us have stories about the CVI Range.  We have stories about what we have learned by studying the work of Dr. Christine Roman-Lantzy and how it has changed our children’s lives for the better.  We have stories of daily struggles and challenges, confusion and tears, low expectations for our children’s cognitive abilities, and lack of access to visual information being interpreted as “behavior issues.”

It is still hard for me to believe that despite Cortical  Visual Impairment being the #1 pediatric visual impairment in first world countries, there remains so little consensus on how to educate these children.

It is time for things to change.

If, as Mark Richert and AFB have stated –

“Successful advocacy requires at least 3 key elements:

consensus about the problems and solutions,

a shared vision among stakeholders regarding the desired outcome,

and initiative on the part of committed change agents who are willing to play a long game while achieving milestones along the way” –

Then, yesterday’s conversation revealed a common concern for the education of children with CVI and parents revealed themselves as committed change agents extraordinaire.  

What a great t-shirt idea!  (AFB, I get 10% of net sales.) 

I’m in for the long game, just don’t tell  my daughter or she will make me play Monopoly.  No one deserves that.

Stay tuned!

 

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

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.

  1.  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.
  2. THERE ARE NO COMFORTABLE HEELS. WAITING FOR WARNER 2017
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?

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

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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.”) 

 

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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.

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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!

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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.

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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!

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

 

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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.

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Pretty much sums it up.

 

Death by IEP / Assessments and Access

There are no tests of potential (different from achievement) that are free from inherent bias for individuals with CVI. The items are often based on content that is linked to visual learning and therefore, the scores will skew low

….and they certainly do.
Dr. Christine Roman-Lantzy

Cognitive assessment is typically based on how a child learns information including rate of learning, problem solving, and accuracy. For children with vision impairment, they have not had access to basic information.

How can you learn, let alone be judged on, information that either you cannot access or others have not given you access?

Dr. Sandra Newcomb

Hello fellow families of beautiful children with CVI,

Since it’s IEP season, I’ve been thinking about assessment tests recently.  As a parent of a child with special needs, I have watched my daughter go through a gauntlet of physical, developmental and cognitive testing from her earliest days.  It can be hard to watch.  It can be hard to hear the results.  Whatever the results, I want them to be accurate.

As the parent of child with CVI, I have learned that there is a lot to be aware of when someone says they want to assess your child.

When Eliza was about a year old, a new occupational therapist wanted to assess her.

We were still wrapping our minds around the diagnoses that had quickly followed our girl into the world:  microcephaly, cerebral palsy, global developmental delay, cortical visual impairment.  The learning curve was less a curve than a straight 90 degree angle to climb with no climbing gear,  and occasional boulders of unforeseen complications – seizures, asthma attacks, severe GI issues, little sleep – raining down at any given time.  We were trying to find our way.

This was soon after our Neuro-Ophthalmologist had told us there was nothing we could do about CVI. “Take her home, treat her like a blind child, come back and see me in a year.”

This was soon after I had ordered Dr. Roman-Lantzy’s book and sought her out for the first time.  I was just at the beginning of understanding what Cortical Visual Impairment was.  The message that Eliza’s vision could improve, however, was loud and clear.

Dr. Roman-Lantzy’s work offered me a glimpse of hope, especially because many of her 10 CVI characteristics explained Eliza’s puzzling behaviors for the first time..

Eliza was a light gazer.  She stared at light coming in through windows, lamps, or any strong light source.  She stared at fans.  She reluctantly used her peripheral vision and only if she had to. There was a long latency period between the time she would glance sideways at an object and then reach for it (usually with her head turned away from the object).  If you did not know to wait, you would miss her processing and getting organized enough to reach for something she had seen 15, 20, 30 seconds earlier.

She would not look into faces.  Her head often hung down, especially in new environments.  The novelty of new places was too much sensory input, and often, caused her to have screaming fits.   She was in Phase I.  I was still learning what that meant, but it was a place to start.  It was a foot hold in my 90 degree upward climb.

The new occupational therapist wanted to assess Eliza’s fine motor skills to establish a baseline to measure future progress.  Made sense to me.  I knew we had to get used to doing this.  We had to let the experts do their thing. Their keen eyes and knowledge would help me read my girl who was in many ways still a puzzle to me.  Their assessments would give us a fuller picture of Eliza and what she could do.  Or would they?

This is what I remember from the first assessment 10 years ago.

It was called the Hawaii Early Learning Profile.  I remember because the acronym for this assessment is HELP.  That was very comforting.  Boy, did I need HELP.  And, why Hawaii?    What did Hawaii know that the rest of the United States did not?  Maybe, there would be poi and hula dancing involved.  (Remember, I was not sleeping and it gets very busy in my head even when I’m well rested).  The HELP would help.

Standing in the OT’s office with one-year-old Eliza on my hip, I read over the developmental charts in the HELP.  I noticed that a lot of what was assessed required that the child had typical vision.   I mentioned this to the therapist.  She agreed that was an issue.  HELP, like most developmental assessments, did not account for vision loss.  But, she would write a note that Eliza had CVI.

I continued reading the chart of developmental milestones.

Looks at picture” – Nope.

“Plays with hands, feet” – Hasn’t found them yet, so no.

“Looks at place where ball falls down” – Uh Uh.

“Plays Peek-A-Boo”  – Well, doesn’t look at faces, so pass.

“Searches with eyes for sound” – Can we substitute stares at light bulbs?

“Places cylinder in similarly shaped hole” – Okay, I don’t even know where to begin with this one.  Just no.

“She is technically legally blind,” I told the OT.  “She doesn’t look at pictures.  She doesn’t look at faces. New sounds startle her. Do you have a different assessment?”  

The OT assured me she would mention Eliza’s diagnosis of CVI in the notes section of the test.

“Wait, what?  The central challenge to her ability to interact with the world will be a footnote?” (Okay, I didn’t say anything that articulate.  The “Wait, what?” is more like it.) 

To begin, she wanted to test Eliza’s ability to track a ball and to reach for it.  She put a light colored tennis ball on a school desk and rolled it to where I was standing with Eliza in my arms.

“Get the ball, Eliza!”  the therapist prompted.  The ball rolled off the desk.  Eliza was oblivious.    The OT looked apologetic, picked up the ball and tried it again.  Eliza stared at the fluorescent lights above us.  I stared at the therapist in disbelief.

She can’t see the ball,” I told the OT.  “It is too similar to the color of the desk.  Can I put a piece of black cloth on the desk to make it easier for her to see?”

“No. We have to maintain the protocol of the assessment.”

“If she could see it, she might reach for it.” 

“We can’t change how we do the assessment.”

So, the assessment will just be a series of zeroes then. It is going to look like she can’t do any of this if we don’t give her a chance to see what you expect her to do.  You’re not going to get an accurate idea of what she can do right now this way.  That’s like me asking you to run an obstacle course or do an algebra test in the dark. How would you score on that?”

“I’m sorry.  This is how we perform this assessment.”

“Well, it’s basically useless.  So, I think we are done here.” 

After watching the OT roll a ball my daughter could not see to her and then, scoring her as unable to track and complete the task, it dawned on me that the rules of this test were stacked against her.  Her development was going to chart a different path, a path this test did not accurately measure.

This was a new and strange idea.  I was slowly getting used to the fact that Eliza didn’t fit in anyone else’s boxes – not the pediatrician’s typical development questionnaires, not the stupid head circumference charts, and now, not even in the assessment for a child with developmental delays.

We were in unchartered territory.  We needed people who would think (and assess) outside of the box.  If the test did not apply to her, then the rules didn’t either.   I thanked the OT for her time, told her we would not be working with her, and took Eliza home.

I am not an expert in developmental assessments, but I have sat through many of them over the years both as an observer and an interviewee.  Eliza is far too capable and far too challenging to be relegated to “notes in the margin.”

I have since seen gifted  interventionists and therapists work with Eliza’s sensory challenges – starting with a thorough reading of her scores on the CVI Range.  I have seen them observe her intently for long periods of time.  I have seen them use trial and error when necessary, but always respectfully.

The kid faces enough challenges as it is.  She at least deserves to be evaluated in a way that reflects her true ability and potential.

And, the HELP was no help at all.  (Sorry.  It was right there.  Someone HAD to say it.) 


Fast forward about 10 years to a week ago, when I was sitting in a meeting with our IEP team at Eliza’s school.

Our search for FAPE in our CVI saga is a long and complicated tale. There have been successes and setbacks.  In the CVI spectrum, Eliza is on the complicated side.  She is non-verbal and has had a series of lackluster school placements.

Yes, she has delays in her physical and cognitive development.  Yes, she can learn.  Yes, these two sentences can co-exist.  You would be surprised how many people you have to convince of this basic fact.

This year we have had slow, steady success with communication.  On the other hand, she has also developed some behaviors that get her out of doing things she doesn’t want to do.  (That kind of cleverness doesn’t show up on cognitive tests.  And, will give me more grey hair than I already have.)

In this recent IEP meeting, a school psychologist confidently presented her assessment of Eliza’s behaviors and introduced the Behavior Intervention Plan that would shape them right up.  There would be a token system of bright yellow stars that Eliza would learn to associate with immediate rewards.  Eliza will comply!  Eliza will be rewarded!

Eliza is currently in mid to upper Phase II now.  With private consultation and work at home, she has begun showing more visual curiosity.  We have worked on teaching actual objects in her environment first and then moving to 2D representations of these objects.  Recent research from CTVI Matt Tietjen has revealed that children with CVI struggle the most with symbolic representations of objects – cartoon drawings, illustrations, etc…   They need to learn the actual objects and then learn the pictures of the objects.  (Check out his class, “What’s the Complexity Framework” offered through Perkins elearning.  Seriously.)

This is what was going through my mind when the psychologist started explaining her token system to us.  They were proposing stars (symbols)  to represent a reward for a child who does not have a lot of external motivators. (I never said she was easy.)  I wondered if the psychologist had actually met my girl.

I wanted to clarify about needing to use actual objects and then move to 2D pictures.

I interjected, “You realize she has a visual impairment right?  She has Cortical Visual Impairment, so we have to —” 

I know, I know.  High contrast.  We have to make the stars high contrast.”  The psychologist cut me off mid-sentence and began explaining her token system again.

I was reminded of something CVI Teacher Ellen Mazel said at a recent conference.

Ellen says that the most dangerous people she has ever met are

1. Teachers who have never heard about CVI

and

2. Teachers who have been to one workshop or read one article and think they are experts in CVI.

I knew I was sitting in this IEP meeting with someone who had read an article and decided she knew CVI.

She was going to continue using the assessments and the strategies she knew (for children with – I can only assume – typical vision) without taking into account how Eliza has access to her environment.
By the way, not having access to your environment, not understanding what is going on around you will affect your behavior.

This situation is still a work in progress.

I am shopping for an advocate and hoping to win the lottery.  To be continued….


What have I learned from these experiences?  What do I continue to learn?

When dealing with children identified with CVI, the CVI Range (Roman 2007) is the assessment that is the foundation of all other assessments.

When you are the parent of a child with CVI, be wary of the assessments used by your intervention or educational teams.  There are not many developmental assessments that take visual impairment into account.  Ask a lot of questions.

Ask them if they know what incidental learning is.  Our children are NOT incidental learners.  This fact should guide how therapists and teachers interact with them.

If you don’t feel comfortable with the answers, ask more questions until you do.  Or, ask for new providers.  You have every right to work with therapists and interventionists who have your child’s best interest at heart and who understand how to work with a child  with CVI.

Regarding other assessments for young children with sensory loss, I found interesting information here:

http://www.wonderbaby.org/articles/development-charts

and

http://www.perkinselearning.org/scout/assessment-young-children-visual-impairments

I am also aware of The Oregon Project for Preschool Children who are Blind or Visually Impaired. It is a comprehensive assessment and curriculum designed for use with children birth to six who are blind or visually impaired. It can be used by parents, teachers, vision specialists, or counselors in the home or in the classroom setting.

 

I am not recommending one assessment over another.  Each child with CVI is unique and requires a multi-disciplinary team approach of therapists, interventionists, teachers, and doctors.  Some of these team members must have a thorough understanding of CVI.

We, the parents, are team captains.  If your team proposes to assess your child with developmental tests that do not give your child access, you may need to discuss what other methods of assessments are available.

If no one on your team says you need to get a CVI Range completed for your child by a Perkins-Roman Endorsee, then, you need to lead the way.

Inaccurate results are not going to help your child.  Inaccurate results are not going to help your child’s therapists or educational team.

Even when it comes to assessments:

It is not extra

And, to all of those folks who want to test our children with tests that do not accommodate them…

To all of the therapists and teachers who have read one article or attended one workshop on CVI and then try to fit these kids in the margins or the footnotes, Eliza and I would like to respectfully say,

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Death by IEP / A New Category (Not a previously unpublished Agatha Christie novel…although wouldn’t THAT be cool? …but I digress.)

Hello fellow families of glorious children who happen to have Cortical Visual Impairment,

It’s IEP season at our house! 

That festive time of year parents of students with special needs eagerly anticipate with the kind of glee small children save for Santa.

Deck the halls with articles about neuroplasticity and webinars on Orientation and Mobility….Fa La La La and the CVI Range….. Ho Ho, ah phooey.

I can’t fool you.  I am not jolly.

Technically, it’s always IEP season at our house because I continue learning what I have to ask for and how to advocate for my complicated girl with a brain based vision impairment not currently acknowledged by the vast majority of school systems in the U.S.  More importantly, it is not acknowledged by, or regulated in, the current laws of Special Education.

Ho Ho – Holy Crud, this is hard. 

(To get us all on the same page, here’s a very basic definition of an IEP.

“IEP stands for Individualized Education Program.  An IEP is a written statement for a child with a disability  that is developed, reviewed, and revised in a meeting in keeping with certain requirements of law and regulations.

The IEP has two general purposes:

(1) to establish measurable annual goals for the child;

(2) to state the special education and related services and supplementary aids and services that the public agency will provide to, or on behalf of, the child.

When constructing an appropriate educational program for a child with disability, the IEP team broadly considers the child’s involvement and participation in three main areas of school life:

  • the general education curriculum
  • extracurricular activities
  • nonacademic activities”)
Source:  http://www.parentcenterhub.org

By the way, we parents are a critical part of the IEP team.

Don’t let anyone tell you otherwise.  Especially when it comes to CVI.  We have a long, bumpy road ahead of us, but we are the ones getting educated about CVI.  We are the ones seeking out experts, reading journals and books.

(Speaking of BOOKS, Dr. Roman-Lantzy’s NEW book, Cortical Visual Impairment: An Approach to Assessment and Intervention, 2nd Edition is out!!!!

Go to the AFB Store to check it out! 

https://www.afb.org/store/Pages/ShoppingCart/HomePage.aspx 

Then Celebrate!!)

We moms and dads are critical members of our children’s IEP teams.  We stay up late researching articles on CVI and our children’s other needs and diagnoses.  We print them out the night before.  We highlight and staple the articles filing them in manila folders with our children’s names written neatly on the tab.  This is our attempt to have some control over a situation in which we have nearly no control whatsoever. (Or maybe it’s just me.)

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Image:  A haggard woman in sunglasses holding stacks of research in each hand prior to an IEP meeting.

I am a perpetual optimist, much to the annoyance of my husband and some of my friends. Yet, despite my tendency to be ridiculously optimistic in the face of dire circumstances, I am worn down by years of IEP meetings that seem to go nowhere.


I have not learned the skill of successful IEP planning.  I am embarrassed to admit this. My daughter is now 11-years-old and I still feel inept and ineffective.  I feel as though I should be smarter than this.  

Googling “IEP assistance” brings up  many, many resources for IEP writing and advocacy.  I suppose I am in good, if frustrated, company.


 

In spite of plenty of effort and research, I  haven’t been particularly successful in articulating how Eliza needs to learn and how the school needs to put it in place. I’m worn down by giving each new school and each new teacher the benefit of the doubt for a few months,  then discovering that the implementation of what we put in the IEP was not carried out.  I’m worn down by insisting that she can learn more than the school thinks she can (“The downward spiral of low expectations.”).  I am worn down by seeing stacks of articles I printed out, untouched on someone’s desk.  Or, never seeing them again.

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Image:  A dining room table covered in papers, low tech communication devices, pictures and binders in preparation for an IEP meeting

Every year I spend  hour after hour attempting to convince, cajole,  and then, demand that the school team learn about how CVI is an obstacle to my child’s ability to learn and WHAT TO DO ABOUT IT.  I have hired private consultants and therapists with money I do not have.  I have documented the progress we make at home to take to school to show what Eliza can accomplish with mutual goals, high expectations, and a common understanding of how to navigate Cortical Visual Impairment because it is an issue every waking second of her day – much like my typical vision is with me every waking second of my day.

Meetings are planned.  School staffs are polite and weary.  Meetings end.  Everyone needs to get back to their jobs.   We agree to disagree.  I refuse to sign the document, or sign in partial agreement with my handwritten list of concerns.

The NEXT IEP meeting is scheduled in a couple of weeks so we can all jump back into the ring and continue the match.

And, before I know it, another year has passed.  I have been humored and circumvented without even realizing it.

I drag myself home after another IEP  meeting to nowhere like the last contestant in a 24 hour dance marathon.  I’ll crawl into a quiet place to sit and stare vacantly for awhile.  (Sometimes I find myself mumbling, “The horror, the horror…”  Ok, that was a slight exaggeration.  Maybe, “the frustration, the lack of understanding…access…..it’s about access, dang it”  Yes, that’s more like it.)

One night as my husband was coolly observing what used to be the dining table (see above), but is now my Command Center For Changing Education As We Know It For Children with CVI  – (too much?) – he commented,

“It’s like Death by IEP.”

And, suddenly my world made a little more sense.

So, now CVI Momifesto has a new category for all of the fun, D-I-Y projects that are our children’s IEPs.   This category will be a place to tell the IEP stories and to share what works and what really doesn’t work.

Baloney

Image:  A post-it note with the words “This is baloney” written on it.  The post-it note is on a copy of an IEP.

To be continued…..

 

 

 

 

 

 

 

Adventures in Advocacy / MaryAnne Roberto

Movements do not form out of the actions of one or two people.

When you study history you begin to see the patterns of how change occurs.  The frustrations of a relative few become the conversations and the questions that seek out others.

I thought it was just me

gets thrown by the wayside for

What are WE going to do about this?

CVI Moms, collectively WE have spent thousands of days, months, years knocking our heads on the brick wall that is the challenge of finding an appropriate education for a child with CVI.

For a long time, it thought it was just me.  I found out I was so wrong.  I wrote a blog post about Kate Keller.

MaryAnne Roberto, a CVI endorsed TVI and mother to 2 boys who are blind wrote a powerhouse of a letter using examples from history and her own story.

Read this letter.    Get ready to write your own.

MaryAnne Roberto
Envision CVI Consulting, LLC
envisioncvi@gmail.com

Craig Meador, President
American Printing House for the Blind
January 10, 2018
Dear Mr. Meador

I read your letter on the APH Facebook page about all the exciting things APH is doing in 2018 to “Make Big Things Happen”. As the mother of two boys who are blind, the information about advances in technology that will be highlighted and promoted in the new year was exciting. One of my sons is totally blind and gifted. He will benefit from the innovative technology that brings the written and graphic world quite literally to his fingertips so that he can access the same information as his peers.

Both of my sons are adopted, and spent their early years in orphanages in China where they were left to exist with no interventions, no education, no access to the world around them. The nannies in their orphanages loved them, I am sure, but had no ability to ‘break down the barriers of accessibility’ for them. They lived in a country where children who are blind are not educated, and are thought to be ‘less than’ the typical population of children.

People did not understand them, and gave them less than adequate tools to prepare them for learning and thriving. They were left out of most of what went on around them. And then, they were adopted, came home to a family with a mother who is a Teacher of the Visually Impaired, and father who is a former Health and Phys Ed teacher at a school for the blind. Their lives changed, and they are now thriving, learning, and in have great potential for success in their lives. Sounds like a fairy tale with a happy ending, right?

For the children with Cortical Visual Impairment in our country, there is no “happy ending.” 

Like my sons’ experiences in China they are often left to exist in classrooms and programs where there is little to no appropriate education and have no visual access to the world around them.

They are taught by teachers who have had inadequate instruction in their diagnosis, and treated by medical professionals who often do not understand this complex condition.

Their true potential cannot be known when they are not given a chance to experience it themselves.

‘Band aid’ programming is thrown at them, IEPs and strategies are guessed at and implemented, and team members are satisfied that they are ‘doing the best they can’ to serve the needs of the largest population of children with visual impairments in our country.

And so, when I read your post as a mother of two blind sons, I was of course excited about all APH had to offer for the future. But, to be honest with you, my sons’ needs are well-known to their teachers. They are registered for the Federal Quota, receive all the adaptive equipment they need, and are given appropriate services. Their needs are handled by professionals who write accurate goals, collect specific data, and order necessary materials for them.

At the same time, I read your post as a Teacher for the Visually Impaired, and a Perkins-Roman CVI Endorsed specialist, and I was quite disappointed. Nowhere in your post did you even mention the diagnosis that accounts for more than half of the children with visual impairments in our country. There was not a whisper of new advances in research and evaluations, no talk of new technology such as CVI Connect, no discussion of the growing need to reach the children who are learning to read in new and innovative ways.

Your post screamed of Braille access and instruction and was deafeningly silent on the children who are not taught to use their vision to learn, but are treated as if they have no vision at all.
I am privileged to work closely with many parents who are rallying to fight for appropriate services for their children with CVI. Much like Helen Keller’s parents, these parents are not willing to sit back and let the ‘powers that be’ provide inadequate services for their children. They fight long and hard and are met with resistance at every turn, and mostly from the world of educators of the visually impaired. Their voices are getting louder, and their cries are beginning to be heard. Unlike the Kellers, however, many of these families do not have the money or connections to affect real change, but slowly, surely, they are making changes in their children’s lives.
Yet, like Helen Keller and her family, who waited years to find an Annie Sullivan, these families are waiting as well. They are waiting for appropriate university programs that will educate future teachers on their children’s visual impairment, waiting for schools and programs to recognize the need for adequate services, and waiting for organizations like yours to put their children at the top of their priority list to ‘Make Big Things Happen’.
I write this letter to you as both an Annie Sullivan and a Kate Keller. As a mother of blind sons and a teacher of the visually impaired I know well the roads that both Annie and Kate walked, The road that Annie walked was paved with determination and fortitude. The road Kate walked was paved with tears and desperation for the little girl she loved so deeply. In our country today, there are far too many Kate Kellers whose roads are paved with tears and desperation, as they beg for appropriate services and materials for their children with CVI. The Annie Sullivans are ill-prepared to support those children or are not interested in learning new techniques.
And organizations like yours with national and international notability and resources have added to their frustrations and desperation by completely ignoring their children.

As Annie and Kate, I am writing to petition your organization to provide more comprehensive education and materials that will support children with CVI in our country. CVI Connect is one product that can be added to the Federal Quota program to give access to activities and much-needed data to support the students in programs to develop their visual potential. By promoting resources and education in CVI, you will quite literally ‘Make Big Things Happen’ for children, who like my own sons when they sat in orphanages half a world away, have little access to the world. We can do better for our CVI kids, and we can give hope to the thousands of Kate Kellers who cry in desperation for appropriate programming for their children.
Thank you for taking the time to read this letter. I would be more than happy to speak with you regarding your commitment to improve the lives of children with CVI through the American Printing House for the Blind’s resources and education.

Sincerely,
MaryAnne Roberto
Teacher of the Blind and Visually Impaired
Perkins-Roman CVI Endorsed Specialist

 

Thank you MaryAnne for this important lesson in advocacy!

Now, CVI Moms, what are we going to do about it?  

Stone Walls and New Starts

Thank you to Ian Christy, Illustrator Extraordinaire, Designer,  & Cool Rockin’ Dad for the fantastic illustration in this post!

Imagine you were walking down the hallway of an elementary school.  As you walked, you saw brief glimpses through the slender window in each classroom door.  In one class, a teacher stands writing at a whiteboard, her students taking notes.  In another classroom, children gather on a rug for story time.

In the last classroom on the left, you see a similar scene.  Students sitting at their desks, raising their hands, doing their classwork.  You notice that one little girl’s desk is surrounded by a single layer of limestone bricks.

The next day, you walk down the hallway again to see the usual business of learning.  Some children are walking around their room going from station to station.  One class watches the teacher do a science experiment at the front of the class.

In the last classroom, however, you see the little girl’s desk is now surrounded by bricks stacked about 2 feet high.  She is sitting quietly. No one seems to notice them. The teacher stands at the front of the class continuing the lesson.  The students continue raising their hands.

You become concerned.  You return every day.  Every day you look into the last classroom on the left. Every day, the wall of blocks  gets taller and taller.  Every day, the little girl sits quietly, growing more isolated than the day before.  Every day, the classroom moves on around her.  You begin to feel anxious for the little girl.

She is being walled in, cut off from her teacher, her peers, her classroom, but no one seems to notice.  You stand at the window day after day and watch as she disappears behind cold, hard stone.  ian access

You knock on the door and ask the teacher why the little girl is being walled in.  She looks at you as though you have lost your mind.  She cannot see the wall.

You run to the principal’s office to tell him that the little girl is being enclosed in a kid sized stone tower.  The principal goes to look for himself.  He doesn’t see the wall either.

Every day the wall gets higher.

You demand a meeting with the principal, the teacher, and anyone else who works with this little girl.

You show them pictures of stone walls.  You bring them research about limestone.  You find articles from education experts who have studied children behind stone walls for decades, and, who have concluded  (surprise!)  that stone walls make learning very difficult.

Children cannot learn when they are cut off from everyone else.  Stone walls = bad for learning.

The team considers your presentation.  They reluctantly admit that – maybe – they noticed the wall from time to time.  An aide admits she tripped over a brick once but didn’t want to make a fuss about it.

Someone suggests that the stone wall may not be the little’s girl’s only problem.

“Sure,” you reply, “ she may have other issues, BUT, that STONE WALL IS NOT HELPING.”

The educational team takes another couple of weeks to develop a learning plan for the little girl.

Every day, the wall gets higher.

At another meeting, the team tells you that a teacher who works with “stone wall children” will take the little girl out of the stone wall to another room for 30 minutes a week.

But, she’s sitting behind the wall for every other minute of the school day!”

Then, Rod Serling comes out of nowhere, pats you on the head, mumbles something about how even The Twilight Zone wasn’t this surreal and disappears.


This seems ridiculous, right?  Or, sadly, mind numblingly familiar?

I have spent sooooo much time trying to explain to people that my kid does not have easy access to the world with her visual system.

I have walked by “Library Time” (my personal pet peeve for children with vision loss in a traditional school setting) where I’ve seen children with CVI sitting passively at tables in the back of the library while the librarian reads a book the size of a magazine to the children grouped at the front.

I have found “art projects” in my daughter’s backpack that were clearly colored in by the well meaning aide who finished it while Eliza was self-stimming in the back of the room.  (I know this because I went to art time one day and found everyone – Eliza’s aide included- sitting at the table coloring, except my girl, who was laying on the floor, rocking. I cannot make this stuff up.)

How are these examples any more ridiculous than watching in panic as a child is enclosed in stone, a situation that no one else seems to find problematic?

They aren’t.


To my fellow CVI families,

2018 is a new start. 

There will be opportunities for us as a community to work together to raise awareness about Cortical Visual Impairment and to demand that our children be educated in a manner in which they can learn.

In this year and every year that follows, we must demand access and expertise.  

Stay tuned

and

Happy New Year!