Nothing is Written in Stone: Looking at the AER 2018 Resolution with Dr. Sandra Newcomb

Hello fellow families of magnificent children who have been identified with Cortical Visual Impairment!

Long time, no blog post!

So, after the success of the American Conference on Pediatric Cortical Visual Impairment, I decided to dial it down a bit and spend some time with my family.  And, learn to play the ukelele, and run 3 miles every other day, and binge watch Fargo.

In July, a CVI mom friend of mine reminded me that Eliza’s older sister, AC, needs as much time and attention as I devote to E and her special needs.

AC’s life looks a lot like this a fair amount of the time.
IMG_0861

 

Or this….
sister squish
Upper:  Two girls in a rope door swing.  One girl is asleep on top of the other.  The girl on the bottom is smiling and holding a book.  Lower:  Two girls smiling and wrestling.  The younger girl is laying on top of the older girl who is grinning good naturedly at being squished.

 

AC is as kind as she is clever and funny.  Sometimes I need to be reminded that this kid needs her time too and I have to extract her from Eliza’s bear hug.

And, she starts high school in a couple of weeks.

WHEN DID SHE

AC baby

 

 

GET OLD ENOUGH TO GO HIGH SCHOOL?

Who is responsible for this?  I want to lodge a complaint.

Excuse me, I have to go hug the stuffing out of her….

Okay, I’m back.

So, I adjusted my to-do list.  I spent as much time with the teenager for as she would allow and I watched Fargo.  Success!

I hope you had some fun this summer.  I hope you had the chance to spend time with your favorite people.

Did anything interesting happen while I was gone or rather lurking in the background reading stuff and taking mental notes for the future?

Well, yes, yes it did.

Something interesting and rather unusual DID happen this summer as an attempt to affect the education of children with vision loss, and specifically Cortical Visual Impairment.

This summer, during the International Conference for the Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER) in Reno, Nevada, a resolution which included very specific language about the CVI Range was put forth, voted on, and passed by the attending members.

You need to be aware of this resolution.

AER and the authors of this resolution are making a statement about the work of Dr. Christine Roman-Lantzy, the CVI Range, and the recent attempts of parents to advocate for the appropriate education of children with Cortical Visual Impairment.

I have a few comments on this resolution, however, I thought it best to first ask for comment from Dr. Sandra Newcomb, from Connections Beyond Sight and Sound at the University of Maryland.  Dr. Newcomb’s research, published in the Journal of Visual Impairment and Blindness in 2010, validated the CVI Range.

Dr. Sandy read the resolution and added comments.  She very graciously allowed me to post her comments with the resolutions.  Most of her comments are in blue.  Emphasis is mine. When I got really emphatic I posted her comments in BOLD RED.


 

Proposed Resolution of the Association for Education and Rehabilitation of the Blind and Visually Impaired: July 2018
Assessment, Services, and Personnel Preparation to Support Students with CVI and their Families
Resolution Number 2018-001
Authors: Yvette Blitzer, Kathryn Botsford, Olaya Landa-Vialard, Sandra Lewis, Mark Richert, and Ye-Ting Siu
Whereas to receive a truly free and appropriate public education under the Individuals with Disabilities Education Act (IDEA), all children and youth with visual impairment, including those who may have additional disabilities, should be properly evaluated by teachers of students with visual impairments (TVIs) who are equipped with and use multiple assessment tools to determine such students’ individual sensory channels, functional vision, and learning media needs;
Whereas these types of evaluations are especially critical for the large and growing population of students who experience neurological visual impairment (frequently otherwise known as cortical or cerebral visual impairment; hereinafter, children with CVI);
Whereas TVIs must also have access to resources and participate in professional development opportunities in order to keep up with the changes in the diagnosis and assessment of CVI and appropriate interventions to minimize its effect;
Whereas whenever possible, assessments conducted by TVIs should include (as called for in IDEA) a variety of research-based, data-driven, and validated tools and strategies to gather relevant functional, developmental, and academic information;

 
Whereas there are currently no assessments available to TVIs that adequately address all the possible effects of CVI and/or meet the exacting scientific standards for research-base, and validated evidence; No assessments of what? Functional vision? Academic achievement? There is an assessment that meets scientific standards for reliability and validity for assessment of functional vision. Newcomb 2010, JVIB

 
Whereas frameworks for functional vision and learning media assessments commonly used by TVIs today are nevertheless based upon recommended practices in the field; But “practices in field” is not defined here.  There is evidence that current practices are from TVIs who have been trained using an ocular model of VI and of functional vision. There is valid research that describes the differences in ocular and cortical visual impairment.  This research reveals the frameworks for ocular are not appropriate for cortical.

 
Whereas there are multiple assessment tools, frameworks and strategies available for use by TVIs when conducting a comprehensive assessment of the visual functioning and sensory channels of children with CVI, the use of which serve to support of IDEA’s mandate for the use of multiple assessment tools; IDEA mandates assessment of functional vision, or how the vision impairment has an educational impact. Multiple tools are used for assessment of multiple constructs (medical tools for diagnosis, curriculum specific tools for achievement, speech/language tools for communication, etc.) These are the multiple tools for getting a comprehensive picture of a child with multiple challenges.

 
Whereas the CVI Range by Christine Roman-Lantzy is but one assessment designed to provide information on the visual and sensory functioning of children with CVI; It is only one assessment, however, in my review of the literature (both for dissertation and ongoing review) there is no other assessment developed for assessment of functional vision for children with CVI.

 
Whereas a package of continuing education opportunities bundled under the Perkins-Roman CVI Range Endorsement brand, and any other continuing education opportunity, are valuable resources to teachers and others who wish to hone and test their skills in the administration of the CVI Range; To date, Perkins has the most continuing education opportunities relative to CVI and to children with multiple disabilities.

 
Whereas some proponents of the CVI Range and the related endorsement are seeking to have policymakers and state and local education agencies require the use of the CVI Range and to require TVIs to obtain the endorsement as a condition on such TVIs’ provision of special education to children with CVI; Who are the proponents? And why should a local system NOT require the use of the only tool that is appropriate to assess the functional vision of children with CVI?

 
Whereas a TVI’s failure to obtain specifically branded continuing education opportunities, even if such opportunities are marketed as an endorsement, and completion of professional training in an assessment tool alone is no indicator of a provider’s preparedness to conduct appropriate comprehensive assessment or provide appropriate special education programming to children with CVI or any other students with visual impairment; Branded? Marketed? Why is it not appropriate for a professional to demonstrate proficiency in an assessment tool that they need to use? There are no other assessments (in any domain) that teachers do not need to be trained on to administer. This is especially critical when the tool relies on the teacher’s observation skills as the primary means of gathering information. When an assessment tool relies on teacher observation, it is critical that the teacher demonstrate he/she is reliable in their observations, otherwise the scores on the assessment are not meaningful.

No assessment in any domain can guarantee that a teacher is able to adequately provide meaningful interventions; however, lack of appropriate assessment data on which to base intervention strategies will guarantee inappropriate or inconsistent interventions.

Only when you start with an appropriate assessment can you hope to design appropriate, individualized, and targeted interventions.

 
Whereas university teacher preparation programs are addressing the needs of children with CVI and their graduates have beginning-level competencies and skills, which can be honed through experience, mentoring, and additional professional development; I have not seen any data, no published data nor anecdotal data, that indicates that university programs are addressing the needs of children with CVI, even at a beginning level. My experience on the MD/DC deaf-blind project, my private work in VA, NJ, WV, KS, and PA, and CVI mentoring in MS and GA have shown just the opposite. Parents and teachers are not prepared to meet the needs of children with CVI. They lack information and training, even some recent graduates of vision programs.

 
Whereas some states allow for individuals to circumvent university preparation teacher training and permit licensure of TVIs via (a) minimal coursework or a (b) test-only credential and functionally allowing individuals without adequate training in assessment of children with ocular and/or neurological-based visual impairment, or program development to assess, plan, and deliver services to children with visual impairments including those with CVI; This should never happen, no matter what state, for any TVI. States should not allow individuals to circumvent proper training.

 
Whereas individuals gaining TVI licensure via a test-only modality are not prepared to assess, plan, and deliver services to students with visual impairment, including those youngsters with complex disorders, such as CVI; Agreed!

 
Whereas it is imperative that parents and guardians of such students with CVI have accurate, complete, and unbiased information about the professional training and qualifications possessed by TVIs today who are evaluating and developing individualized education programs (IEPs) to meet such students’ unique needs; Agreed!

 
Whereas knowledge about neurological visual impairment and children with CVI is evolving rapidly, and a rich body of research and related developments from around the world promises to further enlighten and change educational practice over time;

and
Whereas requiring the use of a single specific assessment today, such as the CVI Range, or the express or implied imposition of brand-specific endorsement requirements on TVIs beyond state licensure and adherence to nationally recognized TVI standards puts students at risk of being denied the most up-to-date assessments and services and needlessly locks state and local educational agencies into practices and purported credentials with a limited shelf life that do not align with federal and state law and policy; For children with CVI, who must have (IDEA) a functional vision assessment, we must insure that the assessment is appropriate for children with CVI.

The CVI Range is, at this time, the only assessment developed to accomplish this task. While it is clear AER objects to “brand-specific” endorsement, there is nothing else that can insure that our children with CVI have an appropriate functional vision assessment.

This is the only the first step in appropriate intervention, but it is a step that cannot be missed or mishandled.

What are the “nationally recognized TVI standards” that include adequate information on CVI? What is more up-to-date? The phrase “purported credentials with limited shelf life” is very inappropriate and inflammatory, and a direct attack on the extensive work done at and through Perkins. The CVI Range endorsement aligns directly with the federal and state law and policy in that a child with CVI needs an appropriate functional vision assessment.
Now therefore be it resolved, that the Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER):
1. encourages personnel preparation programs training new and pre-service TVIs and O&M specialists to include coursework in assessment tools, learning needs, and instructional methodologies to support the diverse needs inherent in the heterogeneous population of students with visual impairment, including those students with neurological-based vision impairment and those with additional disabilities;
2. encourages parents and teachers in all states to educate lawmakers and call for the abolition of “test-only” pathways to TVI licensure and require rigorous university preparation as the only option to gain licensure as a TVI;
3. encourages current and new TVIs to pursue continuing education and/or professional development opportunities and training to keep abreast of the ever-changing practices related to students with neurological visual impairment in order to effectively meet the unique needs of children with CVI;

 
4. encourages state chapters and divisions of AER to advocate for and promote the appropriate use of multiple comprehensive assessments, as mandated by IDEA, thereby honoring all students’ unique needs for appropriate and reasonable accommodations that recognize the diversity of functional vision, learning media, and literacy characteristics inherent in the heterogeneous population of students with visual impairment, including those students with neurological-based vision impairment and those with additional disabilities; while “multiple comprehensive assessments” are indeed necessary to address needs in a comprehensive way (communication, mobility, achievement, etc.), there are not, at this time multiple assessments to measure the functional vision of children with CVI.

 
5. urges the U.S. Congress, state legislatures, and state and local educational agencies to protect the integrity of comprehensive assessments conducted by TVIs both by rejecting calls that expressly or implicitly require the use of any single specific assessment tool or technique with specific populations of students with visual impairment and by refusing to impose specifically-branded in-service training requirements on state-licensed TVIs (prepared in accordance with nationally recognized TVI standards; Council for Exceptional Children (CEC) and Association for the Education and Rehabilitation of the Blind and Visually Impaired (AERBVI) as a precondition for providing special education to children with CVI or any other students with visual impairment; See comments above. The “integrity of comprehensive assessments” means that a TVI can use whatever measure or observation they decide.

 

This insures a continuation of TVIs providing inappropriate assessments for children with CVI and then basing interventions and accommodations on those inappropriate assessments. The cycle of inappropriate interventions and frustrated parents continues!

 
6. calls upon the U.S. Congress to promptly enact the Alice Cogswell and Anne Sullivan Macy Act, which, among other critical policy objectives, would significantly increase investment in quantitative and qualitative research, allowing our field to identify evidence-based practices in assessment and instruction for children with CVI and all other students who are blind, have low vision, are deafblind, or may have these conditions and additional disabilities;

and
7. shall disseminate this resolution online and using any other appropriate means to make it widely available to parents, TVIs, and all other stakeholders to ensure national, state and local communication of these matters.

NOTE: It is my experience that parents are pushing for The CVI Range endorsement because of the lack of professionals who understand their child and who can provide the interventions they need.

Parents are advocating for professionals that demonstrate some level of knowledge, training, and competence in CVI.

At this time, the Perkins-Roman endorsement is the only avenue they have to be sure the teacher knows something about CVI. Too many families are offered services that are inappropriate or worse, no services at all. They are given TVIs that do not understand the characteristics of CVI.

The parents are looking for some way to insure that the people who design programs for their child have some working knowledge of CVI. At this time, they cannot count on pre-service programs to adequately prepare vision teachers to address the needs of their child. They are demanding, or strongly suggesting the endorsement because, for now, that is all they have.

When university programs and national standards catch up to the current population of children with CVI, parents will have done their job of advocating and systems change, not only for their child, but for all children who have CVI.


 

So, how’s that for a little morning reading?

Take your time with this.  Think about it.  Ask questions.   There is more to come.

And, remember…

nothing

 

American Conference of the Pediatric Cortical Visual Impairment Society 2018

They came!  They saw!  They chatted over mojitos and exchanged contact information. 

The Pediatric CVI Society hosted their 6th annual conference at the Children’s Hospital and Medical Center in Omaha, Nebraska.

This, fellow CVI parents, is the conference where you can hear the most recent research on the science surrounding Cortical Visual Impairment and the art of the education of children with this brain based vision loss.  The PCVI Conference is the place where you can meet fellow families, share your stories, ask your questions, and broaden your support network.

The goal of the American Conference on Pediatric Cortical Visual Impairment
(PVCI) is to bring together occupational therapists, ophthalmologists,
optometrists, teachers of the visually impaired, neurologists, pediatric
intensivists, physiatrists and parents to increase interdisciplinary
understanding of cortical visual impairment in children.

 

Introducing the PCVI Society!  

PcVI logo

 

From http://www.pediatriccvisociety.org

pcvi business

Image:  Three people standing at a podium at Children’s Hospital and Medical Center.  Sara Olsen, COO of the PCVI Society,  Lindsey Hiller, the new PCVI Society president and Dr. Skip Legge, outgoing PCVIS president.  These folks have championed our children for years. The conference has grown under their watch and under the watch of the PCVI Society Board.  Trailblazers they are!  Pith helmets for all!

We care about kids with CVI.

The mission of the Pediatric Cortical Visual Impairment Society (“the Society”) is to advocate for improvement in the quality of life of children with vision loss due to brain disorder, disease or injury. The mission is restricted to matters concerning the sense of vision.

Goals

The mission of the Society will be fulfilled through the pursuit of the following goals:

1. Advance interdisciplinary education and research.

2. Enhance dissemination of information and its communication among and between professionals, parents, government and educational institutions, and other groups whom impact children with cortical visual impairment.

3. Advocate for the appropriate allocation of resources to allow for improved vision services for children with cortical visual impairment.

4. Improve public and professional awareness of cortical visual impairment in children.

5. Advocate for governmental policy that improves quality and quantity of vision services available to children with cortical visual impairment.

6. Engage in fundraising activities that will allow for advancement of the Mission and the Goals of the Society.

On this note, I am happy to tell you that there is a lot of momentum around raising awareness about Cortical Visual Impairment and improving medical and educational outcomes for our children.  Top priorities for the next year are to create a new website with resources for doctors, providers, educators and families and to fund research.  

To continue building the PCVI Society and to strengthen the Society’s ability to be a champion for children with Cortical Visual Impairment and their families, we need members. 

The PCVI Society needs members to help us blaze a trail for our children.

———————————————–

BECAUSE

Children with CVI need to be identified as early as possible.

They need providers who understand the unique needs of children with CVI.

Families of children with CVI need support and education to help their children see the world.

———————————————-

So, I will make you the offer I made the folks at this year’s conference.

For the people who become members of the PCVI Society and who encourage two other people to become members of the Society, I – one random mom – will offer you your very own PITH HELMET OF GRATITUDE.

Just email me at Info@cvimomifesto.com with your name and the 2 (or more) other members you have recruited and I will have a pith helmet with your name on it at the 2019 PCVI Conference!

The pith helmet is for trail blazers!  Get it?  I forgot to say that at the conference.  Also, it’s easier to bring pith helmets to a conference than homemade pie.  Speaking of pie… 

IMG_0711

pith helmet
Images: Above:  Gunjan Rastogi-Wilson, CVI mom, advocate, and fundraiser with pie.
Below:  Random mother in blue jacket at the PCVI conference sporting a “pith helmet” from Oriental Trading Compnay.  Nothing but the best for our trail blazers!  This could be you!

 

.

http://www.pediatriccvisociety.org/membership/

 

alice

The future for our children and our families is currently under construction. The Pediatric Cortical Visual Impairment Society is leading the way

What I Would Want Someone To Say To Me / Early Connections Conference

Hello fellow families of magnificent children who happen to have a diagnosis of cortical visual impairment,

I had the opportunity to speak to a group of families with children (ages birth to 7) who have vision loss at the Early Connections Conference at Perkins School for the Blind.

A few months ago, Education Director, Teri Turgeon wrote me and asked if I was game to come to the conference and speak.  There may have been a moment of panic.

“What do you want me to say?”  I asked her.

“Just tell your story,” she said.

Huh.

This got me thinking.  And over-thinking.

I have nearly 12 years of Eliza stories.  Most often, I blurt them out at inopportune moments –

to E’s ABA therapists as they are collecting what they need before a session,

to GI nurses asking me for her health history,

to her school aide who just really wants to go to lunch. (And that is just this week.)

These are the people I see most frequently.

I realize as I get some perspective on this past decade or so, these stories have to be told.  If only so I can get out from under them.

Here was an actual invitation to speak instead of someone politely nodding until I trail off….  Bliss!

Here’s the first half.

I am the mother of a child who received early intervention services.  Which means that I am a mother who received early intervention services.  These supports are as much or more for us than for our children.  Even when your child “graduates” from EI, you’re always an early intervention mom.  It’s a world we never knew existed until we needed it.  I will always carry a debt of gratitude for the compassion and knowledge a team of women in two states brought into my house.  Women who saw me at my most desperate and disheveled.  Women who never once said, “Haven’t you been wearing those sweatpants for a week?”

I know firsthand how important early intervention is.  It is critical to have intensive support at the beginning of your journey of becoming the parent of a child with special needs.

And, it is a becoming.

Becoming a parent changes you.

Becoming a parent of a child with vision loss and special needs changes you.  814348If you had told me 10 years ago that I would have a chance to speak to a group of families like mine, I would have paid more attention, or tried to – as it was the sleep deprivation and worry nearly killed me – so, maybe not.

This is the 35th annual Early Connections Conference.  Being here to celebrate Perkins’ commitment to the education and support of families like ours is an absolute joy for me.

When I thought about coming to speak to you, I thought about my own conference experiences.  I’m usually sitting where you are trying write down every word.  Because Eliza is a puzzle.  She has multiple diagnoses but no definitive diagnosis as a cause for her issues, I’ve been to a lot of conferences trying to figure her out.  I went to anything I could find on cortical visual impairment.  I went to conferences on Cerebral Palsy, general special education and early childhood conferences.  I was a conference groupie.

As life with Eliza unfolded, more complications occurred.  We all got less sleep.  Life became more stressful and – yes – complicated.  (Complications make your life complicated.  Mind blown.)

She was a puzzle. I was trying to find THE expert who could explain what was happening to us.  Someone who could fix everything or SOMEthing.  In spite of my best efforts, it slowly became apparent that this was not a possibility.

It was just really hard.

At the time, I thought if I just try harder, if we add one more therapy, if I read one more book or find one more specialist or go to one more conference – then I can help her learn how to bear weight on her legs, or sit up independently, or eat, or speak.

My thought process went like this: I have seen the movies!  I can do this.  All it takes it a plucky mom who never gives up.  Right?

My experiences with conferences usually had one of the two following outcomes:

  1. Conferences where the speakers (either parents or self advocates or doctors) seemed to have everything together.  They overcame challenges with a single bound and sheer dint of will.  They held down full-time jobs as lawyers, saints, superheroes or supreme court justices, yet they still had time to do genetic research in their basements.  And, this research solved their child’s (or their own) mysterious condition.  THESE are the people Lifetime movies are made of.
  2. Conferences where a brilliant teacher or researcher knew what I needed to know – THE APPROACH I needed to learn.  THE information that would improve my daughter’s quality of life.  This teacher had all of 45 minutes to present, however, and I needed 3 to 5 years of mentoring/modeling in my home to understand it.

What’s worse, these presenters rudely refused my attempts to kidnap or clone them.

(I mean, what is a little hair sample between conference attendees?  And, what if I had been able to kidnap or clone them?  Now there’s your Lifetime movie right there, folks.  We could even have been an HBO series. Maybe Dame Judy Dench or Tony Shalhoub would have played me.  I’ve been watching Monk again recently.  The man is a treasure.)

Either way, I would go into a conference bright eyed and hopeful.  I’d see a few presentations.  I would start to feel frustrated and overwhelmed.  I’d slink away to a quiet spot somewhere to call my husband.  I’d call (maybe crying a little bit) and tell him how much we don’t know, how much we aren’t doing, how I am failing as a parent and a human being, how everyone else gets it and I just don’t and what’s wrong with me, what’s wrong with you that you married me – you get the drift.

After listening as patiently as possible, Robb would inevitably threaten to change the locks on our front door if I continued to go to conferences as a form of self-punishment.

This is fair.  (Uncool, but fair.) 

It was just that – to me – it felt as though everyone else knew what they were doing.  If I could just learn what THAT was, our lives would run smoother, my daughter would make more progress faster and easier, maybe we’d sleep a little.  What was I doing wrong?

While the problem surely wasn’t with the events or presenters, it was with me, I still felt isolated and incompetent.

——————————————————-

The Early Connections Conference has a lot of support to offer.  I wanted my presentation to be a positive experience for any other conference groupies.

To be clear, I am no expert on anything. And, I don’t have time to be kidnapped.  We couldn’t afford the ransom; we have a kid with special needs.

——————————————————–

I may never again get the chance to address a crowd of parents who are just where I was a decade or so ago.

What would I want someone to say to me?

E and mom

Image:  A woman who hasn’t slept in 18 months smiles wearily at the camera. She is holding the hand of her  blond toddler in glasses.  The toddler leans up against her.

 

HEY YOU.  Yes, you – the tired woman leaning against the counter in a dark kitchen cramming Baked Lays into your mouth at 3 a.m. You are standing in the dark, staring straight ahead, seeing nothing.  You hope chewing will drown out the sound of your baby screaming upstairs.  You just came down to take a break.  You’ve been trying to console her for half an hour, 2 hours, 4 hours – depends on the night.  You are beyond exhausted. You are numb.  Wrung out.  The only thing that makes sense is chewing fistfuls of chips and remembering to breathe.

You aren’t thinking straight, so may I suggest taking a shower?  You haven’t had one in 3 days.  Believe me, she will still be screaming when you get out.

You are numb, but somewhere in a tiny corner in your mind where your emotions are stuffed, you are scared that this is what your life is going to be from now on.  That you will never have a solid night of sleep again.  You are worried and so scared.  There is so much you don’t understand. You want to scream.  Or, more accurately, if you had enough energy you would seriously consider it.  At times, you are stunned that you can produce that many tears.  But, you are past that right now. You are aching to find a quiet hole to crawl into but your worry and your love wouldn’t let you rest even if you did.

HEY YOU.  You will get through this.  You won’t be the same. That can be a good thing.  There are many of us who have gotten through this.  We have stories to tell. And so will you.

You will be a more vulnerable yet tougher (if that makes sense) version of yourself.  You will laugh louder and take yourself far less seriously.  Years of living outside your comfort zone will give you the gift of not caring what other people think. (You may even start a blog!  How crazy is that?)  Your kitchen floor will often be filthy.  You just won’t care.

You will find yourself filled with so much gratitude for the kindness and patience bestowed on you and your girl on a daily basis.

You will find yourself with far less patience for incompetence, below average medical staff, and uninspired teachers.

You will be startled by the haggard woman in the mirror from time to time, but you know she is doing the best that she can.

You will learn that people really do help when they can.  Sometimes they just can’t.  Even when you ask.  As a result, you will learn that you can hear the word “no” and – surprise – the world will not fall apart.  You will be broken down and broken open – by life circumstances, by other people’s perspectives, by the enormity of the love you never imagined until you became a parent, and by the responsibility that goes along with it.

You will learn that you can take a hit.  You can take a hit, get back up and get on with it.  You are stronger than you ever imagined.  This  is not a meme someone posted to make you feel better for 10 seconds.  This is the reality of living through challenge after challenge and standing up to love and to try again the next day.  That is your truth.

Yes, she is really is a complicated kid.  When she was born, you moved right out of any comfort zone you had grown used to and into the perpetual discomfort of the unknown.  Unknown diagnoses, unknown potential, unknown ability, no support group for your puzzle kid.

So, no, you are not doing it wrong.  It is really hard.  It is a lot to learn.

You will learn over time that kids with vision loss, especially CVI, are complicated.  CVI does not stand alone.  The population of children with vision loss has changed over the years.  Thanks to advances in modern medicine, our premature babies, babies who have medical crises, and puzzle babies like Eliza, are surviving.  These babies often have multiple diagnoses. They are surviving and thriving!

This is a cause for celebration (after we’ve all had a 2 year nap and some early intervention services.  I am an optimist and a realist.)

Because of this, however, we are all running to catch up to their needs – to learn how they communicate, how they learn, how to help them see.

And, NO, she doesn’t sleep!  (Have I mentioned that before?)  And, yes, that stinks.  It is cruel and unusual.

It is overwhelming.

(A piece of advice:  You know how they say don’t make any major life decisions when you are in crisis? 

Don’t go to the hairdresser on a whim and ask for something completely different.  Just don’t.  You WILL end up with orange hair and it WILL NOT “compliment your complexion” no matter what anyone says.  They are just saying that because you’ve been wearing the same sweatpants for 4 days and they feel sorry for you. 

It had to be said.)

HEY YOU.  This girl.

E with bib

Image:  A blue eyed baby wearing a bib with pink flowers stares into the camera.

She will bring the BEST people into your life.  The. best. people.

There will be some crummy ones too, but they never stay long because she takes some work.  We don’t have time for them anyway.

Life with her is intense.  It is real.  It can be boring.  It can change on a dime.  You will get better at this.  It will still be difficult some days.  Being a parent is difficult some days, period.  It is not for sissies.

This girl.

E in bouncy seat

Image:  A chubby cheeked baby reclines in a blue bouncy chair

She finds joy in the places you forgot to look.

Be with her.  Learn from her.  The bond you establish with her now just by being present and loving her unconditionally is the foundation to every future success.

And, the best part is that this is the best part!  It is supposed to easy.  It is.

There is no doubt that therapy is important.  Doctor’s visits are important.  Second and third opinions are important,

HOWEVER,

Remember that day when the OT cancelled?  It was in the summer when Eliza wasn’t even a year old and Anna Cady was a curly haired toddler?  You were  relieved  when the appointment was cancelled. For a moment, THE schedule lifted.  The OT, PT, Development Therapy, the vision lady who came but didn’t understand CVI.  For a moment, it all just stopped.

SKY

Image:  Bright blue sky with white clouds

On that afternoon you took a blanket out in the backyard.  You and the girls stretched out on the blanket.  The grass was cool on your feet in the shade of the jacaranda tree in full fuschia bloom. You and Anna Cady looked up at the sky and watched the clouds drift by.  Eliza didn’t see the clouds, but she was lying between two of her favorite people.  She felt a warm breeze on her face.  She smelled the blossoms.  She heard your voices as you giggled and pointed out the shapes of animals shifting in the clouds above.  She was included.  It was simple and fun.  Just the three of you enjoying each other’s company.

Remember that?

DO THAT MORE.  Do not take any of this for granted.  Slow down, sister.  This time is so important.  Enjoy her.  Let her enjoy you.  There is more to see here if you take the time to look.  You don’t have to do all the time.  She is who she is.  Let her show you who she is.

Baby girls

Image:  Two little girls, a bald blue eyed grinning baby and a wide eyed toddler smiles for the camera.

She is not broken.

You are, a little bit.

She loves you in spite of your broken parts.

She and her sister will help you put them back together again in ways you never imagined.

That is what I would say to my 10 years ago self.

Thank you for indulging me.