“Some kind of help is the kind of help that helping’s all about…”

CVI Momifesto7 Comments

Hello fellow CVI Moms and the wonderful people who teach and care for our children,

There are some days when my heart breaks and is put back together again by gratitude at the kindness of another human being.

You know those days when you try so hard and you think no one notices?

When you are the only one you know researching CVI providers in your spare moments while other moms are scheduling playdates.  When you add articles in neuroscience to your Favorites page for a little light reading, and create experience books (while mentally planning more family “experiences” that you can document and print out to make more experience books).  When you cram every possible detail into your brain about this neurologically based visual impairment that makes the world a confusing, overwhelming place for your child.

You become a confused, overwhelmed parent in the process.  And, you think no one notices.

Or, when they do, it is definitely not what you need.  I remember when E was a baby and no one was sleeping.   I was just at the beginning of understanding the list of diagnoses we had just gotten.   I was in over my head and trying to keep our lives somewhat functional.  A lot of that time is a grey blur when I look back.

Many days I felt as though I was drowning in plain sight.

Often, people I’d have conversations with would just keep on having their conversations. And, all the while I would be thinking, “I am drowning here. Can’t you see that?”  For the folks who did notice, many times their response was something similar to saying to a drowning person, “Hey, I see you’re drowning.  Here’s a book on building a boat.  You should really read it, assemble all of the necessary supplies, and build this boat  – you know – to keep yourself from drowning.”

Drowning folks do not have the time, energy or resources to build themselves a boat. Parents of children with complicated medical issues, including CVI, get through some days by taking it minute by minute, or second by second.   Surviving these moments in spite of the “help” offered by some becomes the only trophy you award yourself at the end of day.

Okay, so we can all agree, “some kind of help is the kind of help we all can do without.”  (Read Shel Silverstein’s poem, Helping, if you do not recognize this reference. I’ll wait.)

Before I tell you how my heart got broken and put back together again, I need to make sure we are all on the same page here.

Cortical Visual Impairment…

(Cerebral Visual Impairment, Neurological Visual Impairment, or “Rumplestiltskin” – when I’m feeling cranky about the ongoing debate what to name this complicated condition)

…is a condition affecting children of many varied abilities.  CVI is the result of many possible causes.

CVI is a term used to describe a variety of visual characteristics and the severity of these characteristics in a variety of children – some who are verbal, some who are not, some who are mobile, some who are not.  Every child is unique.  What every child needs is unique to her or him.  It’s a challenge to find common ground when discussing such a variety of children, abilities, and behaviors.

CVI is a spectrum.  This is one fact we can hang our pith helmets on.  It’s our spectrum.

As I share where my daughter falls on this spectrum, I hope that other parents whose children are at different places on the spectrum can relate.  Our children are complicated.   I celebrate the children who got to Phase III with relative ease.  I celebrate the infants in Phase I and their D-I-Y moms who are creating accessible universes for their little ones with PVC pipe and craft supplies.  I celebrate the children who can speak and read just as I celebrate the classmate on E’s bus who shows me the toy he brings to school on the bus every day.  CVI affects all of them.  I think they are all magnificent human beings, period.

CVI is a spectrum.   Where my daughter falls within this spectrum is that at 11, she is non-verbal (yet, loud as the dickens when she wants to be).  She is mobile.  After learning to walk with a walker at the age of 3, she eventually learned to walk independently within a year after that.

We went from Phase I to Phase II with me doing CVI accommodations at home.  By the time she was 3 years old and in Phase II, it was time to find the right school environment for her.  (See the post on Lego Trees to find out how much fun that was.)

We were seeing Dr. Roman-Lantzy every year.  When we went back just after E turned 4, her CVI Range score had actually gone down from the prior year.  Dr. Roman-Lantzy warned us that if we didn’t figure out how to communicate with her and help her use her vision, then she would develop behavior issues quickly.

That was a tough ride home.

Her visual impairment made attempts to learn communication systems very challenging.  She did not see well enough to understand signs and lacked the fine motor ability to do them.  I began to doubt whether or not she was able to understand and communicate.  Despite my attempts to educate myself on how CVI affects a child’s education, I found myself doubting her abilities.  (Doing the same thing I do not want her teachers to do.)

“Assume competence” is a popular phrase among therapists.  Boy, I have tried. Some days I was not successful.  Those were dark days.

This past year, after much trial and error (including much research to find the right speech therapist, a CVI consultant and thumb wrestling matches with school administrators in 3 different states), she has started to use a couple of signs and she is using some very basic communication devices. Finding a CVI consultant and working with an ABA team to use specific signs and pictures of actual objects in E’s life have opened up new possibilities for her.  We’ve turned a corner this year;  I finally see progress.  As she learns to communicate, I can also see that she has things to tell me and that it is very frustrating not to be able to do so.

I know in my heart that if we had been able to get her in a program and with a teacher and staff who understood CVI, she would be at a higher level of communication than she is now. I did the very best I could to learn as quickly as possible.  I did the best I could to bring CVI awareness and experts to the public schools we were in.   I have to forgive myself because I know I have done the best I could with the time and resources I have had.  I am still trying.

Okay, so now I need to tell you about the 5th graders who reminded me of the “help that helping’s all about.”

Over the past few years at E’s current school, I have been pushing for her to have more day-to-day involvement with her “typical” (sigh) peers.  She is in an ID class (Intellectual Disabilities, to the uninitiated) with other children who are non-verbal.  My point, for 3 years – at this school, has been, “How can we expect to learn any language if she spends the entire day with children who do not talk?  How can she learn to interact – verbally or non-verbally – with other children if she never gets to spend any time with them?” 

The responses I’ve received for the lack on inclusion have ranged from the uninspired “6th grade doesn’t do morning meeting.”  Huh.  Well, what about the other grades?

to the incorrect – “It’s a safety issue.” Huh.  For whom?  Isn’t that why we have aides?  And, have you heard about IDEA, by chance?

to the mind boggling -“We do have inclusion opportunities.  You just haven’t been here to see them.” Huh?  And, I’m just hearing about them now after asking for almost 3 years?  Do tell.  I’m all ears.

But, this year – this year!

I picked up the inclusion fight right where we left off last year.  I wanted her included in a class’ morning meeting time to interact with them everyday.  I pushed for them to come up with different times for her to be with other children as well.  She now attends music and recess with this class and others at different times during the week.  It is so much better than what it was when we got here.

After all of the struggle and excuses from administrators, finally, she has a chance to get to know other students.  For her to see them.  For them to see her.

And, darn it all, if that isn’t when a group of 5th graders broke my heart wide open.

Apparently, some of the children in the 5th grade class took an interest in how E communicates.  They watched her come in with her Step by Step button, and her personal story books (Pictello is the app.  Check it out!) on her Ipad.

They started thinking.

Their thinking led to a powerpoint called E and The Issue On How To Communicate.

I can say (with only a little bias) that THIS IS THE BEST POWERPOINT of ALL TIME.

The 5th graders made a plan to create a device to help E communicate.  The 5th graders made a presentation, people.  They sent it to her teacher.  She sent it to me.  I needed to wring out my laptop after reading it.

I am going to share some of this presentation with you because it is THE BEST.

THE ISSUE

“We have been meeting with E for a few weeks now, so we know she has cerebral palsy, CVI, and mild autism.  We all know she is happy, but wouldn’t it be nice for her to come home and to be able to say ‘I love you’ to her parents?  After reading the book, Out of My Mind, about a girl with CP, we were determined to help E.  We got together and came up with a device to help her communicate.  We’d like her to be the first student we help.  We know E has a special disorder called Cortical Visual Impairment that causes her brain not to be able to process what she sees.  So, she uses her hearing to tell the difference between various people.  Because of that, we focused on hearing and touch, rather than sight in the device. “

THE PLAN

“Don’t worry, we have a plan to make this work. (For once, I’m speechless.) We need to be able to teach E after we get to learn more about her, her abilities, and her struggles.  We want to design the device based on E’s strengths and weaknesses, so once we have gotten the total price, we will have a fundraiser to create this life changing device.  So, don’t worry about the cost we got it covered.” (Again, no words.) 

One section of the presentation is images of devices and materials they are going to create or buy to make a contraption my daughter can use to communicate. Then, they want to teach her how to use it.

Yesterday, I went to pick up E for an afternoon therapy session.  This 5th grade class happened to be lining up in the hall on the way to lunch.

A couple of the girls said, “Hi, E’s mom.”

I had the urge to hug the stuffing out of the whole group, but I didn’t want to scare them. So, I went with nonchalance.  “Hi guys, I read your PowerPoint.  It’s really impressive.”

A little girl with plastic Harry Potter glasses was passing by me.  She stopped and said matter-of-factly, “Yeah, we thought it would be nice if E could come home and say, ‘Hi, Mama.'”  

The simplicity of this statement took my breath away.  I needed to give some kind of response. Sobbing clearly wasn’t an option.  I clenched my jaw, tried to smile, and nodded.

She nodded politely and walked on to the cafeteria, swinging her lunchbox.

Whether or not, this device eventually works, the ideas behind it and the effort they have put in already have worked on me.

Some days people notice!

Some days I am floored by the grace and kindness that comes from unexpected places.

Some days I am reminded of the fact that children are my favorite people, period.

Their kind of help is the kind of help that helping’s all about.

Their open hearts and minds will be our saving grace.

 

 

 

 

Moms on Monday #2 / Mary from Ohio

CVI Momifesto3 Comments

This week we have the privilege of hearing from a tenacious mother and advocate from Cleveland, Ohio.  There are so many parts of this story that are familiar to me and are important for other moms to hear. She has a lot to teach us.

Take it away, Mary!

Dear CVI Family,

My name is Mary and I am a mother of an eighteen year old daughter.  That’s right, eighteen YEARS I’ve been at this.  I am tired and I am worn, but I haven’t given up.  

You see when my daughter was born we knew she had a very rare chromosome disorder that we couldn’t do anything to change.  We knew she had a very serious heart muscle issue that we couldn’t do anything to change.  She had feeding issues and couldn’t nurse. She threw up and was later labeled a failure to thrive.  She had this vision issue that we weren’t sure about.  She couldn’t hold her head up.  She couldn’t latch on or drink from a normal nipple.  Her delivery was an emergency C-section.  She was born not breathing. The cardiologist sent her home from the doctor saying they didn’t know what her prognosis was because her heart function was so poor.  

So, can you see that our focus was on her surviving?   And, way down the list was her vision.  

Eighteen years ago, CVI was such a new diagnosis that her vision issues flew under the radar of importance.  And, you don’t know what you don’t know.  

Finally, at 9 months we were told to go see an ophthalmologist who explained that my daughter had a visual processing issue that was brain based and that time might help.

(Does that sound familiar? And, I can’t believe parents are still hearing the same thing today. )

So, in the blur of everything else we were dealing with we accepted the “expert’s” opinion and continued on with helping our daughter to make developmental gains.  By this time, her heart muscle function had greatly improved and we were moving out of “survival” mode into helping her become all that she could become.

For years my daughter did so much therapy.  And, the puzzling question for so many of us was that she didn’t seem to have any intrinsic motivation to do or learn.  Why was that? Therapist after therapist were puzzled by it.  

By this time, we had seen another ophthalmologist who told us the same thing about her vision. “It’s a visual processing disorder.  Her eyes are physically just fine.  There’s nothing that can be done. Don’t waste your money on vision therapy.” Again, I took the “expert’s” word for it.

She learned to walk by age 4.  By this time, it was clear that she would have developmental challenges her whole life. Trying to help her was frustrating and puzzling.

But, like all of you, I have that “mom gut.” I knew what worked for her.  Plus, I took an awesome autism course that helped me understand that there is almost always a reason for every behavior.  I learned through this course that lots of children with sensory issues have trouble picking out what should be salient.  Yep, that’s the word that was used.  

So, still not knowing about the CVI, I began narrating to her to help her focus on specific things that might be salient.  She struggled in complex environments.  She didn’t make eye contact.  She looked above our heads.  She didn’t look right at things.  She looked and then looked away before reaching for things.  She avoided toys that had too much going on. (As I type this, it is painful because if I had only known back then what I know now, I could have helped her so much more.)  

But, you don’t know what you don’t know.  

I knew that when I talked her through things she was calmer.  She loved Elmo.  So, I would use Elmo as a way to get her to motor plan getting to things. (I put Elmo everywhere.)  There were so many things that I did because I knew they worked for her but I didn’t understand why they worked.

My daughter was in and out of public school.  She started in an inclusive preschool when she was 5.  It was overwhelming for her.  She would often “freeze”.  She didn’t engage. The words, “learned passivity” were used.  So, I blamed myself for causing her to freeze and not initiate.

The public school approach with my daughter was not right for her but it was all they knew to do.  There wasn’t even a vision specialist on her IEP team.  I didn’t know to ask for it.   My daughter was not making progress in the public schools.  Often she would make great progress at home over the summer and then go to school and the progress would stop.

Here are the things I began advocating for:

1)  Wait Time    

2)  Narrating for her to help explain situations  

3)  Quiet lunch with a few willing peers

 4)  A consistent one on one aide for her whole day  

5)  A study carrel for her to work.  

Don’t those things sound familiar?  But you don’t know what you don’t know.   I finally requested a TVI evaluate her as a part of her Evaluation Team Report.

I had heard about CVI by then.  I had Googled some of her unusual visual behaviors and CVI had popped up.  When I say popped up, it didn’t pop up like it does now.  There were a few, and I mean a few, sites and a few articles.

The TVI knew about CVI and even had a CVI evaluation kit.  He evaluated her and firmly explained that she did not have CVI.  There were too many things that she was able to do visually that were not consistent with CVI.  The expert had spoken and although I was doubtful, I didn’t question it.  After all, you don’t know what you don’t know.

After a few years of trying to make the school setting work for her,  I advocated for and got an outside placement for her at an autism center.  There was still no diagnosis of CVI but because the center was used to working with kids with sensory processing issues,  it was a better fit than the public school setting.  At this same time, I began taking her to a behavioral optometry place for vision therapy.  They recognized right away that she was using her peripheral vision and began working with her to use her central vision.  It was a vision therapy approach and it was a start.  She began to use her central vision in fleeting moments.  She also started to do very short tracking.

By this time, my daughter was about 14.  We had seen ophthalmologists, neurologists, a behavioral optometrist, and a TVI who had some knowledge of CVI and, still, no one had diagnosed her formally with CVI.   

I was beginning to up my research of CVI because there were too many things that my daughter did that were part of the characteristics.  After 14 years, I was tired of advocating for my daughter without any diagnosis or support.  So many times, I was told to let the “experts” know best.  I was tired.  And, I felt all alone.  

My daughter switched school placements at age 14.  Her school placement was at a mostly outpatient private therapy center.  They often brought in speakers to educate the therapists.  One of the speakers that visited was Dr. Roman.  One of my daughter’s school therapists was in attendance.  She called to tell me that she was sure my daughter had CVI.   

About 6 weeks later, at the age of 14, my daughter, myself and several of her therapists from her school placement went to Pittsburgh to see Dr. Roman.  My daughter was diagnosed on the CVI range as Phase II 5.25-6.  Thankfully, Dr. Roman said that it was remarkable how well my daughter had progressed even without the diagnosis.  

After all those years, the puzzle piece clicked.  I now knew what so many of you already know.  I knew why my daughter’s vision was so puzzling.  I knew that it was something that could be helped.  You see, I had always said that I knew that the chromosome disorder had caused an organic development issue that caused her body/brain to be formed differently.  But, I also kept saying that there was a part of her that seemed like it was being rehabbed.  There’s that “mom gut” again.  

So, at age 14, after years of advocating, fighting and so much frustration, there was finally a diagnosis. 

There was credibility for all the things that I had advocated for.  And, there was hope for the future because more than ever I knew how to help her.  I also had the hope that her visual processing would get better. 

Like you want for your children,  I  wanted her to become the best “her” she could become.  Plus, I wanted her to learn to enjoy her world, not be afraid and frustrated by it.   She seemed way smarter than she was able to show. 

We began the difficult process of teasing out which behaviors were because of cognitive challenges and which behaviors were because of her CVI issues or which were a combination of both.  You see, because everyone knew that she had cognitive issues, that is what would get blamed and so the supports given were for cognitive challenges.  

Now, I knew how to support her vision so she could continue to develop.   At the age of 15, after having a year of much more focused appropriate supports she had made great progress. She was still in  Phase II, but  had progressed to 6.25-7. Hurray for neuroplasticity! You see, you don’t know what you don’t know.  But, when you know, you can do better.  I was learning to do better!

At age 18, she is in Phase III 8-9.  She will always have cognitive limitations and global limitations.  I can’t do much to change those.  But, I can help her vision improve.  And, she is enjoying her world more.  I am still tired.  But, I’m not alone.  And, I’m grateful for this blog which brings us all together to share our stories and our experience.  

Thank you for your insight and your willingness to share what you’ve learned with us.   

 

 

 

Calling CVI Moms: The Conversation Continues

CVI Momifesto2 Comments

sorrows borne

Hello Fellows Moms, Dads, and Folks who love a child with CVI,

When reading sites about CVI, I see plenty of conversation about CVI among certain researchers, doctors, and teachers. It is happening more now than ever.  This is a good thing.

But, where are the stories of the families?  Of the children themselves?  Where are the stories of the people whose lives are affected by CVI 24 hours a day? 

I love the quote,

“All sorrows can be borne if you put them into a story or tell a story about them.”

It is attributed to the author, Karen Blixen, who wrote under the name Isak Dinesen.  (She knew a thing or two about sorrow.)

If you belong to this community of families, it is highly likely you and your family have withstood a significant amount of sorrow on this journey.

Children with Cortical Visual Impairment (Cerebral Visual Impairment) are children who have endured much at a young age.  Some were premature and suffered a brain bleed.  Some had a stroke in-utero or soon after birth.  Some had hypoxia (not enough oxygen in-utero or during birth).  Some have brains with atypical structures.   Some have seizures.  Some have metabolic issues.  Some have genetic syndromes.  Some children acquire CVI at a later time after a traumatic brain injury.

Some children have any combination of the above.

The conditions which cause CVI are complicated and vary widely from child to child.

As the parents of these children, we bear witness to what our children endure.  There is sorrow when you see your child suffer.  There is frustration, and certainly, sorrow in navigating what your child needs to learn and to thrive. It can be so isolating and confusing.

Stories can help us bear the sorrow.  Stories can help us navigate the unfamiliar territory of having children with a complicated neurological visual impairment.  Stories will encourage more medical and education professionals to recognize and understand CVI.

We need your stories.

Jessica Marquardt from North Carolina was the first Mom on Monday.  It is an honor to share her story.

We need to hear your story.  It’s easy.  It’s important!

Read the questions below.

Answer the ones you would like to answer.

Submit them to info@cvimomifesto.com.

Parent stories will be posted on Mondays.

Moms on Mondays

Introduction:  Your first name, your child’s first name and age, the state you live in

(If you would prefer to use an initial instead of your name, fine!  If you’d like to share a picture, great!)

About your child:  What does she like to do?  What makes him laugh?  What are her favorite activities?  What do you like to do as family?

When did you first learn about CVI?

How were you given the diagnosis?

Does your child have other diagnoses you’d like to mention?  (Totally up to you)

How is/was your child’s Early Intervention experience with regard to CVI? (Were your providers knowledgeable? Were they open to learning?)

How is CVI being addressed in your child’s school setting? (If applicable.)

What do you know now that you wish you had known at the beginning of your journey as your child’s mom? 

What would you tell a mother whose child has just been identified as having CVI?

What would you like for people who have never heard of CVI to know? 

Hopes and dreams?  Anything else you’d like to add?  

Looking forward to your stories and meeting your beautiful children!

 

 

 

 

 

 

 

 

 

 

 

Moms On Monday #1 / Jessica from NC

CVI Momifesto4 Comments

Good Morning Fellow CVI Families,

Part of starting a blog called CVI Momifesto was to build community between families facing similar challenges, but separated by distance and/or too busy to find each other.  We can learn from each other.   We can support each other.

I asked several CVI Moms I know if they would be interested in sharing their stories in a regular post we will call Moms On Monday.  If you are interested in sharing your story as well, please email Info@cvimomifesto.com, so we can begin the conversation!

Our first Mom on Monday is Jessica Marquardt from North Carolina.   Welcome, Jessica!  And, thank you. 

Summer was turning to fall in North Carolina, and our neighborhood was out in full force for the annual picnic – a time to catch up with neighbors we hadn’t seen for the season, or perhaps even a year. My daughter (we’ll call her G) is an enthusiastic kindergartner who is learning to write. She traveled from guest to guest asking if they needed a nametag and, if so, would they spell their name so she could be the one to write it?
On three separate occasions, neighbors approached my husband and me to tell us how much G had grown. Not in stature (well, that too), but specifically in maturity and independence. She was actively approaching people to engage in conversation and, as one neighbor put it, “seems happier in her own skin.”
Sounds like your typical, outgoing five-year-old. But there’s a catch. With cortical visual impairment (CVI), G doesn’t recognize faces. She walked up to my husband to ask him if he wanted a nametag. He mouthed, so as not to use his voice, to the neighbor next to him to ask G who she was talking to. She had no idea.
Yes, my daughter has CVI. She can’t interpret the illustrations in her favorite story book and can’t pick me or my husband out of a crowd until we open our mouths. But I’d say she’s fortunate. With a diagnosis of CVI, her vision can improve.
We have been told that of the 90 kids in our county’s school system with CVI, she’s the only one on a standard course of study.

She’s in her neighborhood school in a general education classroom and she receives services from a TVI, O&M specialist, OT and adapted PE. That she is so capable brings its own challenges. She wants to keep up; she wants to be with her peers. However, just like all kids with CVI, she needs specific interventions and supports to ensure that she can. And she needs a team that can stay a couple steps ahead of her to ensure it is prepared to meet her CVI needs.
How did we get here?

My daughter was diagnosed with CVI at eight months old. She has CVI due to a vascular event of unknown cause that occurred in utero or during early development. We have access to stellar medical care and early intervention services, yet no one told us that there was an opportunity to improve G’s functional vision. It took a trip to Omaha to the Conference on Pediatric Cortical Visual Impairment for us to begin to understand the opportunities and challenges. G was four by then – we’d lost four precious years of maximum neuroplasticity.
Armed with newfound knowledge, we traveled to Pittsburgh to see Dr. Christine Roman who conducted The CVI Range to assess G’s functional vision. We read textbooks and articles, watched webcasts and talked to other parents. We asked our school system about its roadmap for training teachers in CVI and related techniques. We asked specifically for a CVI Range Endorsed professional to be a part of G’s IEP team. There aren’t many out there, so our school system couldn’t promise to provide one. So we hired one privately. After meeting G, she began to work with us on a consultative basis, answering our many questions and making suggestions for how we could start to do the right things for G to make gains with her vision. We asked our private OT to join us in taking the Perkins e-Learning course on CVI with Dr. Roman. She agreed wholeheartedly, and our CVI Range Endorsed consultant is now her mentor on appropriate CVI interventions. They’ve made a wonderful team, even though the mentor lives many states away.

That’s the positive outlook. But it hasn’t all been rosy. We don’t live in an area that is ahead of the curve on CVI. We’ve had to educate ourselves and become a broken record for the cause. In less than a year, we’ve attended 30 hours of IEP meetings, plus hours preparing for them.

During one meeting, I felt compelled to text my sister. The exchange pretty much sums up my feelings on IEP meetings:
ME: Still in meeting and dying with stress. Please pray for me.
SISTER: Oh, I’m so sorry. Sending love and calm and prayers.
ME: I’m dying. I might be having a heart attack. Haha!
SISTER: ☹ I’m sorry!!
There have been sleepless nights (I’m a worrier). Tummy aches. Anger. Anger at doctors, the school system and myself for not knowing. For not jumping up and down and sending up a flare to say “Hey, her diagnosis is CVI. We can do something about that.” It’s a tough moment when you realize that no one will advocate for your child like you will, and if you don’t, your child won’t have all she needs to access the curriculum. Honestly, I could write a full post on IEPs, so we’ll save that for another time.
Here are my top three musts on your journey as a parent or guardian of a kid with CVI:
1. Get a CVI Range done by a CVI Range Endorsed professional. You need a score to know where to start intervening. This is non-negotiable.
2. Attend the Conference on Pediatric Cortical Visual Impairment. It changed my world to meet fellow parents and CVI knowledgeable providers (from both medical and education fields). I found “my people” there and learned a ton. You will too. You must get to Omaha.
3. Put together your advisory board. Some will be CVI experts, some will be your cheering section. My husband and I credit ours for molding us into CVI advocates over the past year and a half. We’d consider the following people to be members of our advisory board, and I highly suggest you start to think through who you can call for advice and support: Dr. Roman, our CVI Range Endorsed consultant, our private OT, our special education lawyer, various members of our family (you saw the dramatic texts my sister receives from me in the middle of the day) and other parents of kids with CVI who we’ve met along the way.
After a summer of intentional work on CVI-based interventions with our enthusiastic OT (who has taken some Perkins training and is being mentored by a CVI Range Endorsed professional), our daughter has improved by a quarter of a point on both Rating I and Rating II of The CVI Range. That’s on par with our expectations for a three-month period, and we believe in the hard work that it takes to get there (another topic that warrants a blog post). We expect more improvement as kindergarten continues and are heartened by what we see anecdotally.

G’s visual curiosity is growing and, as a result, so is her ability to access her world.

Name that Neurological Visual Impairment & Love the Hub

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Hello you good looking fellow parents of glorious children who happen to have CVI!

(Only one cup of coffee so far.  Why do you ask?)

I have been researching resources on Cortical Visual Impairment for the website of the up and coming non-profit organization, the Pediatric Cortical Visual Impairment Society (PCVI).

Often, when researching, information will come up about Cerebral Visual Impairment.   Generally speaking, Cerebral Visual Impairment is what we in the U.S. call Cortical Visual Impairment or, even, Cerebral/Cortical VI, aka C/CVI.  OK?  Confused yet?

For decades, researchers, teachers, and doctors on different continents have been debating what title to use to most accurately describe this neurologically based visual condition.

Here’s is one random mom’s perspective:  Whether you prefer “Cerebral” or “Cortical” should not hinder the progress that needs to be made in getting this condition recognized, diagnosed, and addressed in the classroom.

I would happily call CVI, “Shirley,” “Joe,” or “Rumpelstiltskin” if it meant that schools understood that they need to have endorsed teachers and a team approach to working with children with this unique visual impairment.

But I digress.  We were talking about resources.  There is so much good information out there in cyberspace.  There is also a great deal of outdated information.  Much more than when I began looking 10 years ago.

Sorting through it is time consuming.  And, we all know how much extra time we have, am I right?

Here’s a timesaver and an excellent resource:  the CVI Hub on the website for Perkins School for the Blind.

http://www.perkinselearning.org/cvi

Perkins “gets” CVI and understands that more progress in diagnosing and educating children with CVI needs to happen YESTERDAY.

I particularly appreciate Perkins’ eagerness to share parent experiences and parent/teacher experiences.

As we have mentioned before, there are fellow CVI parents who are moving mountains and raising awareness on behalf of their children.  Their stories are important for the rest of us.  Their successes and their challenges give us greater perspective about our own experiences.

Here are 3 resources on the Hub that have come directly from CVI parents (There are plenty more, as well as a wealth of information from teachers, doctors, and researchers).

1. Partners on the Journey:  A TVI and Family’s CVI Experience from Birth to Age 3. 

A dedicated and fierce CVI Mom, Gunjan Rastogi-Wilson, and her family’s CVI Endorsed TVI, the incomparable MaryAnne Roberto, recently did a webinar for the CVI Hub.  This webinar is a great resource for parents at the beginning of their CVI journey.  You will find it at http://www.perkinselearning.org/videos/webinar/journey-cvi-experience-birth.

2. Accessible Ipad Apps:  Eric Jerman 

Eric Jerman is a CVI Dad who received his master’s degree in Education for Orientation and Mobility from UMass. He has collected a list of over 200 iPad apps and has organized them into four categories.  1. Cause and Effect   2.  Digital Books for Interactive Stories  3. Music 4. Communication

“My son can’t see five feet beyond him, so I bring the world to him using the IPad.”

I, for one, am so glad he is sharing his knowledge to help me bring the world to my daughter.

http://www.perkinselearning.org/technology/posts/accessible-ipad

3.  Talking points for school districts

YES, school districts!

When you are debating with your local school system about the need for CVI Endorsed Teachers, refer to the CVI Hub site for information you can take to your next IEP meeting.

On the Hub site for School Districts, you will find the following quote:

“Perkins’ reputation in the field is unparalleled.  When my staff required professional development on working with students with CVI, I knew I could trust the experts at Perkins.”  — Irene M. Meier, Ph.D., Director of Special Education at Fairfax County Public Schools, Falls Church, Virginia

The Fairfax County Public School System has a national reputation for excellence.  FCPS has enrolled several teachers in the CVI Endorsement and is training teachers, therapists, and aides in Deaf-Blind Modules.

This training is happending because a parent (guess who?) kept bringing in research articles, reports from Dr. Roman and Dr. Sandy Newcomb, and statements on CVI from the American Printing House for the Blind and the American Foundation for the Blind.  It took the better part of 3 years to get momentum going, but there is momentum.

If other school systems are seeking out more training on Cortical Visual Impairment, why isn’t yours?

Fair question, don’t you think?

 

Trailblazing: How do I ask for/renegotiate a CVI Endorsed Teacher?Experts weigh in.

CVI Momifesto3 Comments

Hello fellow families of glorious children who happen to have CVI!

Remember this from the last blog post?

…At the meeting with the team you are putting together, you have every right to request a CVI Endorsed teacher.  
It will sound weird.
You may be the first person in your school, county, state to do so. 
There will be an awkward pause. 
They will look at you funny.  
When they do, you will wonder whether or not you are
1. crazy 
or
2. asking too much. 

You are neither.

All of this is true.  Challenging your schools and your school systems to recognize and accommodate for CVI is advocating for your child’s quality of life. We are trailblazers.  Pith helmets are optional.

There was a comment after the post, asking for help renegotiating at an IEP for a CVI Endorsed Teacher.  I read the comment a few times.  I was out of my league.  I couldn’t make a dumb joke and tell everyone to “keep on keeping on.”

I have been trying to find the “right” answers to questions like this for years.  I find that each state is different, their systems of government are different and their school systems are different; you get my drift.

Living in a state in which your child has access to

-a diagnosis of CVI

-teachers who are CVI endorsed

and

-schools that recognize the unique needs of children with CVI is RARE.   

Every time my family moves to a new state, the prospect of unraveling the knotty problem of educating a child with vision loss lands at the top of my to-do list.  Who to talk to?  How much experience does the classroom teacher/TVI/aides have?  Has anyone ever heard the letters C,V and I put together before?  How does this state accommodate students with vision loss?  Some states do it better than others.  The list goes on  and on.

I am a parent advocate, but, I am not an expert in the IEP process.  Not even for my own kid.  I hope to be someday.

I am a parent who thinks this CVI situation needs to improve on a national scale.  I am learning and asking a lot of questions.

With this understood, I asked the question “How can I renegotiate for a CVI Endorsed teacher after already having the annual meeting?” with some experts in the field of education.

It is an important question for many families.  Thank you, Christi, for asking it.

There isn’t one answer to this question at this point in our journey.  But, here are the responses I got.

Many thanks to Dr. Julie Durando, Ellen Mazel, Peggy Palmer, and Dr. Christine Roman-Lantzy for their time and willingness to help CVI families navigate this bumpy terrain.

Julie Durando, Ed.D., Project Director, Virginia Project for Children and Young Adults with Deaf-Blindness – “The challenge of asking for a CVI Endorsed teacher on an IEP is that Virginia doesn’t recognize the endorsement in any official capacity.

Schools don’t really have a way to require teachers to get something that isn’t recognized as a Virginia certification or endorsement.

Even in the field of VI and Blindness, there is disagreement about which strategies are most effective.  This can make it confusing for administrators when experts in the field don’t agree.

I like to hope that professionals take personal responsibility to learn the skills needed to effectively do their jobs and serve kids well.

The shortage of teachers with VI certification does not make anyone at the state level eager to add stipulations to who can serve in this role.

This is no way unique to Virginia.

It is a national problem.”

Ellen Mazel, CVI Program Manager, Perkins School for the Blind –  “I always say the CVI Range is the only assessment with reliability to look at functional vision for a child with CVI.  The creator of that assessment (Dr. Christine Roman-Lantzy) determined that people need to prove competence in its use.

The steps to prove that competence begin with the Endorsement she has created.

There is no one doing an assessment of the Wilson Reading Program who has not gone through extensive training in it’s use.

There is no one doing many kinds of educational testing assessments without going through training.

The CVI Range is no different.”

Peggy Palmer, TVI –  “It’s a bit dicey, of course, to ask for a CVI Endorsed teacher after (I assume) the child already has a TVI.  However, I would go with the argument that with this brain based eye condition, the correct kind of strategies can have a dramatic effect on a child’s brain development.

A person who is CVI endorsed is able to correctly assess the child’s vision, prescribe the best strategies for vision development and provide ongoing assessments as the child’s vision changes.

We are not advocating for our children to make new friends.”

Dr. Christine Roman-Lantzy – “My thought would be to reopen the IEP and/or use the content of the IEP to support whether or not the CVI Range was used properly and that present levels, objectives, and accommodations are all incorporated and match the CVI Range Scale.”

This is what I’ve got so far.  It is good to have the insight of experts.  They can provide us with language that can sway school administrators.  Also, this insight can help you with your own advocate, or, as you prepare your own case for advocacy.

We are setting precedents.  Creating change is – like any act of creation – messy, chaotic, and fraught with folks who liked it better before you stuck your nose in it.

But, for children with CVI, where is the fun – the Free and Appropriate Public Education in that?

 

 

 

Ok, CVI Moms, Where do we start? TEAMS and Trailblazing

CVI Momifesto2 Comments

It dawned on me recently that CVI is bigger than I am.

In most of my research to understand what needs to happen at my daughter’s school so she will have ACCESS to her learning environment and will be taught by people who understand the effect CVI has on a child’s development, I keep running across the same word.

TEAM 

There’s a lot to say around this.  So, let’s start with a great resource for moms who do not know where to start.

http://tech.aph.org/cvi   The American Printing House (APH) for the Blind has a great resource page on CVI for parents, teachers, and anyone who wants to learn more about the history of this condition and the ongoing efforts to improve services for children.  There is a link called TEAMING that can help you get an idea about what your child’s team should look like.

http://tech.aph.org/cvi/?page_id=352  This page is under TEAMING.  It describes a Daily Routines Matrix that give you a foundation to start from when working with your child’s team to make the activities of the day accessible.   My only comment on this page is that when it refers to your vision teacher or your TVI, I would replace this with CVI Endorsed Teacher (preferably CVI Endorsed TVI, but, there are plenty of OTs, PTs, and other professionals becoming endorsed).  

AND,

this is important,

at the meeting with the team you are putting together,

(because you are the mom and you are the quarterback of this team and they need to take you seriously because IDEA. 

IDEA. The Individuals with Disabilities Education Act, for the uninitiated.  If you are reading this, you are definitely initiated.

Welcome to our club!  Your membership includes a complementary glow-in-the-dark decoder ring, a box of tissues, a supersize box of chocolate, and a gallon jar of aspirin to be delivered by Ryan Gosling, a mid-70’s Paul Newman, Beyonce, or the fantasy delivery person of your choice.) 

Sorry, I got carried away – where was I?

Oh yes, at the meeting with the team you are putting together, you have every right to request a CVI Endorsed teacher.  

It will sound weird.

You may be the first person in your school, county, state to do so. 

There will be an awkward pause. 

They will look at you funny.  

When they do, you will wonder whether or not you are

1. crazy 

or

2. asking too much. 

You are neither.  

You are fighting for your child’s quality of life.  And, if that is not understood in your IEP, if you are not supported by the educational powers-that-be, then, hear it from me.

You are not asking too much.  You are not crazy.

You are blazing a trail for your child and for other children.

I was the first person to ask for a CVI Endorsed Teacher in my girl’s school.  We are still hammering out just what that means and what her team is supposed to look like, because we are learning this in real time.  We are setting the precedents. 

I was not the first person to ask for a CVI Endorsed Teacher in my county or state though.  There are some kickass moms here who started this fight before I got here.

There are moms asking the same questions and beginning to ask for CVI Endorsed teachers all over the country.  You can see it on the comments and questions on FB pages.

Remember: When you are thinking about your child in school, she will need a TEAM of people who understand CVI.  You are a critical part of this TEAM. The concept of a team and the amount of training, mentoring, planning, and preparing of materials necessary for many children with CVI is a brand new idea to schools.

They will NOT accept it after hearing it from you the first time.  They just will not.

We are asking them for more resources and more funding than they have budgeted.  They do not understand why these modifications are so important.

So, we learn what our children need.  We learn to be very specific.  We have to prepare ourselves.  All the while, we are educating our schools, our principals, our teachers of the visually impaired.  We are teaching them about preparation, determination, hard work and hope.

In addition to being a CVI Mom and all of the hats that job includes, add the Pith helmet of a trailblazer to the list.

Pith helmetAnd, if I do say so myself, it looks spectacular on you.

 

 

 

 

“CVI Moms are the busiest people I know”…and THIS IS WHY

CVI Momifesto5 Comments

I had quite the action plan this week and I learned stuff.

I learned that if you are up late typing a blog post,  you will fall asleep.  You will delete the nearly finished post when your head bobs, you jerk awake, and your hand slaps the keyboard. Then, groggy and irritated, I learned that when you spend five minutes clicking refresh in the hope that the words will reappear, they will not.

This was not part of my action plan.  Just thought you should know.

I haven’t given up on my action plan, but, the learning lesson with a blog post reminded me that CVI moms are often trying to cram more into a 24 hour day than will comfortably fit.  It’s like the day is a pair of Spanx and we have to fit the elephant in the room into those Spanx.

Every day.

It’s not pretty.  There is chafing.  But, it gets done.

Mostly.  There may be some unsightly bulges and an enraged pachyderm, but, hey, nothing’s perfect.

(I just used the word “Spanx” in a post about vision loss.   I’m thinking this is a first.) 

Dr. Christine Roman-Lantzy often says that CVI Moms are the busiest people she knows. She says this when the need for more CVI endorsed teachers, policy changes, and basic awareness about CVI is inevitably brought up in a presentation.

CVI Moms are often the mothers of children with multiple diagnoses.  We are juggling medical and educational needs while attempting to maintain families, jobs, and, (oh, who am I kidding?) – an identity of our own.   I am mostly failing at all of the above.  And, I have forgotten my middle name.

This week, I have not been particularly successful.  My patience is worn thin.  I speak in short, rushed sentences.  I am behind on making the adapted experience books I promised I would make for E’s classroom.  My dining room table is the insurance/invoice/bill station.  I owe return calls to therapists, the genetic counselor, the insurance case manager, to name a few. I may have walked/fed the dog.  Maybe.  My couch is covered in pictures, more pictures, Velcro, (So. Much. Velcro.), glue sticks, bare books (www.barebooks.com – You need these to make simpler book versions of other books, or of pictures of objects that are meaningful and motivating.) 

This week I was able to correspond with some other CVI moms about some advocacy and fundraising items in the works.  They are getting it done.  They are managing their jobs, their families, and their children’s IEPs.  They are doing the legwork teaching their schools about what children with CVI need.  They are training the educational staff. They are demanding more educational staff.  They are adapting materials.  All of these activities are full time jobs on top of their full time jobs.

And, still, when asked to do something that will help other families like ours, they say “yes.”

They understand that change will come only when we work together.

There will be chafing, however, it gets done.

In the past, relatives have asked me as they coolly examine my never-ending stacks of paper and pictures, my bed head and permanently furrowed eyebrow, “Why do you try so hard?”  At first, I stumbled over my words because I was so surprised by the question.  It seemed so obvious to me.  And, then, in their presence, I felt so alone.

I thought, “No one should ever have to feel this alone.”  I’ve thought that a lot over the past decade.

This is why a community is so important.  The CVI Moms I know are fierce, loving, dedicated, and resolute.  They are some of the best people I will ever know.  Their determination and courage gives me heart when I lose it from time to time. They remind me that I am not alone.  They remind me why we try so hard.

THIS IS WHY.

 

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This post and life got the better of me this week because I spend a lot of time advocating for my daughter’s quality of life.

And, then, I don’t feel so unsuccessful.

“The bottom line is that child is not making sense of the visual world.” – A CVI Mom speaks

CVI Momifesto4 Comments

Hello Fellow CVI Families!

CVI Momifesto has been around a month today!  (I started it on Labor Day.  See what I did there?)

If you have read a post or two, I encourage you to go back and look at the first post in which the actual Momifesto is laid out.

There remains a need for advocacy for our children. Our children often have several diagnoses.  They are often called “complicated” (If I had a quarter for every time I’ve heard the word “complicated” in a doctor’s office or a classroom,  I’d have toll fare for the rest of my life.)  Some of our children aren’t that “complicated” and the extent of their vision loss goes unnoticed, and therefore, unaccommodated.

Before I published CVI Momifesto, I contacted a mother named Bernadette Jackel after I found her post on another blog. She graciously agreed to let me include her story here.

Bernadette has an important perspective to share with CVI parents.  She has been on this road longer than many of us.

Please read her story and share your thoughts.

The following was posted on 10/30/08.  (A Parent’s Voice blog by Susan LaVenture on http://www.familyconnect.org)

The first guest blogger, a mother from Connecticut, is Bernadette Jackel. Her son is seventeen years old, and has cortical visual impairment (CVI). Many families that have kids with CVI find that it can be complicated; often times the services providers themselves don’t fully understand the impact the visual impairment has on the child’s learning. A child with CVI often has so many complicated issues that frequently the vision impairment is ignored, and a parent needs to be the advocate to make sure that their child is receiving the treatments and rehabilitation services that will allow him to learn.

by Bernadette Jackel
Cortical/Cerebral Visual Impairment is the fastest growing diagnosis of visual impairment today, and yet there are still many medical and education professionals that don’t understand the implications CVI has on learning and functioning in a visual world.
When my son was born 17 years ago, there was not very much information available on CVI nor was it easy to access that information since the Internet had not yet been designed. We had to muddle through as best we could, taking his vision into consideration at every turn.

My son experienced difficulties with visually guided movement so he walked later than his peers. Once he was walking, he tripped over curbs, walked off stairs as though they were flat, hung on for dear life in crowded environments, was not able to see in noisy environments, had a difficult time orienting himself in space, and often confused other people for me. He also experienced his vision being there one moment and not being there the next. He needed everything he was looking at explained to him so he understood what he was seeing.
When my son began school, we found that the staff had no knowledge of CVI. They couldn’t understand that this cute, blond-haired, green-eyed, lovable, friendly, outgoing, funny, ambulatory, speaking 5-year-old who didn’t “look blind” and “seemed to see” could possibly have Cortical Visual Impairment. The TVI did not know how to teach the staff how to teach a child she didn’t know how to teach herself.
So, it was decided that his visual impairment would not be considered a “true” visual impairment but instead a learning disability and later an intellectual disability. After all, his acuity is measured at 20/80 and he could see the primer print. But it took him a really long time to focus on each word because he lacked saccades. He didn’t see the middle of each word because he had a central scotoma. He didn’t understand the pictures on the page because there wasn’t enough contrast. He couldn’t pick out one object on the page because the page was too crowded to see more than one thing at a time.

He had difficulty in math because he was unable to see all the objects he was supposed to count. For example, he would only see three items yet he was told there were five in front of him.

The playground became another area that was difficult for him. He couldn’t play ball because he didn’t see the ball coming at him. He couldn’t run around with his peers because he so often had to stop to feel surface changes with his foot for his own safety.
He also had difficulty identifying classmates by sight, sustaining visual attention for long periods of time, seeing in the distance, and difficulty with extraneous auditory stimuli.
Again, although these difficulties were well documented and he had a diagnosis of CVI, it was decided that he chose not to see, that his visual fluctuation was volitional and his difficulties learning were due to “other issues,” not to vision. I often liken his public school experience to refusing to teach a deaf child communication skills and then saying that child has a severe language disorder.
These same difficulties that he had at 1, 2, 3, 4, and 5 years old he still has today. Much of it he has learned to compensate for himself, however, not one of the above-mentioned issues have resolved, gone away, been cured. Because of our diligence and his own perseverance, he certainly understands the world better now than he did when his CVI was considered to be a learning disability rather than a visual impairment.
We had to go through a due process hearing in order to get him an appropriate education. Once he was given the proper modifications and accommodations from a wonderful staff that understands the learning implications of CVI, both academically and functionally, he began to thrive. Unfortunately he spent seven years not getting these modifications and accommodations.
It is disturbing that these same misunderstandings still exist today among many of our medical and educational professionals. Today there is plenty of information available, but every day I read how children are still experiencing the same difficulties getting the proper services that we did.

Parents are still in search of good information because they are not being given any from their medical professionals. Some parents are having a hard time finding a doctor to give the proper diagnosis although the child clearly has CVI. Certainly children are entering schools where there is no knowledge of CVI, and often these children are experiencing the same difficulties my son did in trying to get an appropriate education.
Regardless of whether a child cannot see due to an ocular issue or a brain issue, the bottom line is that child is not making sense of the visual world. The lack of understanding this leads to many, many difficulties in the child’s life, difficulties that can easily be circumvented.
It appears that we are still lacking good strategies for students as they enter into school settings although we are not. Many, if not all, of the same strategies one would use to teach a child who is blind or low vision are very beneficial to the student with CVI. The child’s educational environment must also be taken into consideration.
CVI is a real visual impairment and it is a growing diagnosis. CVI needs to come to the forefront of the medical and educational collective mind so children can get the proper diagnosis and the education they deserve. Colleges and universities with TVI programs need to have good, comprehensive classes on CVI so the teachers understand and learn best practices. With all this in place, many of these children will reach their fullest potential and become contributing members of society; otherwise, I fear we will end up with a large population of undereducated, visually impaired people who will be dependent upon society for their livelihoods.

This was written 9 years ago.  Pretty sobering, huh?

WHAT YOU CAN DO:  Join the conversation.  If you are willing to share some of your story as a CVI parent, write us here at info@cvimomifesto.com.

We will follow up with you for an upcoming feature. 

“It is what it is.” I wonder.

CVI Momifesto1 Comment

“It is what it is.”  A dedicated TVI with many years of experience said this to me earlier this morning.

This is not the post I had planned for today.  I planned to follow up with more examples of incidental learning, the kind of effortless learning typically sighted people take for granted.  The kind of learning not available to children with vision loss.

It bears repeating:  Children with Cortical Visual Impairment are NOT incidental learners.  This phrase may become my first tattoo.

Take this critical piece of knowledge with you when you begin the ongoing conversation with schools about how to teach you children.  It has been a real challenge to get this point across in every school my daughter has attended.  I wish I had known how to explain incidental learning much sooner.

My secret goal is for everyone who knows me to get to the point that, when I begin to say (maybe a little self righteously),“Have you ever heard of incid…”

They will cut me off with an exasperated sigh.  “Incidental learning. Yes. Good grief. We know.  WE KNOW. Can we please, for once, finish a pizza without discussing how typically sighted people effortlessly process information?”

Then, with a satisfied smile and a mouth full of cheesy pepperoni, my work here will be done.

That was the plan for this post.

But, then this morning, I participated in a conference call between the educational team from my daughter’s school and the staff at our state’s DeafBlind Project.  (There are federally funded DeafBlind projects in every state.  The DeafBlind community has been very receptive to the CVI community.  They have the expertise in teaching children with sensory loss that is often missing in general Special Education programs.  If you are not satisfied with how your child is being taught, ask about the DeafBlind Project in your state.  You can find it here – https://nationaldb.org)  

The conference call was a way for the educators at the DeafBlind Project to offer training and coaching to my daughter’s classroom teacher and her aides (sometimes aides get overlooked, but they often spend more time with the child than the teacher). I will go into more detail about the National Center on Deaf-Blindness and State Projects in later posts.

After the call, our TVI wanted to catch up on my daughter’s progress this summer. She told me about the materials and accommodations she made at the end of last year and into ESY (Extended School Year) for my girl. She explained how she had lobbied for more time in the classroom and more training for everyone.  She was actually preparing to leave early for a family emergency, but, she made sure she came for this conference call.

She wanted me to know that she has been giving this school, this classroom, my daughter, everything she can.

“But, you know,” she smiled sadly at me, “it is what it is.”

I do know.

What it is  is  Teachers of the Visually Impaired working with caseloads so large, and in so many schools, that they struggle to meet the time allotments in each student’s IEP.  TVI who can only provide consultation, at best seeing students 15, 30, 45 minutes a week.  At worst 15, 30, 45 minutes a month. (For students whose vision loss affects their access to their environment every waking minute of their day.)  TVI who, in some states, are expected to provide Early Intervention as well as in-school consultation for students through high-school. (How effective would you be if you had to braille a high school senior’s Geometry homework, then, drive to the next county to show a new mother how to interact with her baby with low vision?  How would the average Kindergarten teacher feel about taking over for a Calculus teacher and visa versa?  Different, equally important, sets of skills.) 

This is what it is.  This is how it is. It is already not enough for children with ocular forms of vision loss.

AND, Cortical Visual Impairment is a new challenge for TVI. They did not get the training on CVI in their teacher training programs. Many of them are recognizing this challenge.  They are asking for more training.  When school districts are unwilling to provide it, they are seeking it out themselves.  They are paying to get themselves the skills to teach our children, to help the world make sense to our children.

I applaud the Teachers of the Visually Impaired who are taking the initiative to learn about CVI and to advocate for children with CVI in their classrooms, often to no avail.  (Don’t give up!  You aren’t alone! These kids matter! I will personally bake you a pie and hug the stuffing out of you if I ever get the chance.)

Today was, finally, a step in the right direction for making school a place where my daughter can learn.  I know it is just a beginning. I have learned to say that I am “cautiously optimistic” when things seem to be improving.

I cannot forget that it has taken me over two years, in this school alone, of arguing, pleading, explaining, attending conferences, and doing my own research to get to this point.

I have had the pleasure of meeting a very dedicated TVI who is going above and beyond for us and for all of her students.  I am so grateful for her time and her effort.  I will continue to learn from her and with her.

Yet, it is what it is.  It is still not enough time. She is still pulled in too many directions.

If it is what it is, I wonder what it can be if we put our minds to it.

I wonder how we, the parents, can help it become what it should be: consistent access to a learning environment, teachers who understand CVI and who can make appropriate modifications in a classroom, enough teachers and TVI to give every child with any vision loss, including CVI, ample direct instruction and consultation.

I wonder.  Do you?