Moms on Monday #8 / Rebecca from VA

Good morning fellow CVI families,

Time is a precious commodity in the lives of parents of children with special needs.

The never-ending loop of Christmas songs in every public place and the constant parade of UPS trucks in your neighborhood means holidays are just around the corner.

During the holidays, the disruption of our routines and schedules makes life more stressful and time even more precious.

Dr. Roman-Lantzy says, “CVI moms are the busiest people I know.”  Now is not the best time to be writing up your story for a blog for other parents. You are in the throes of making holiday magic happen for your family.  That is what we do.

Since I have posted all of the Moms on Monday stories sent to me thus far, I will be today’s MOM.  And, because, I am today’s MOM, this post is late because that is how I roll (or write, or whatever, you know what I mean).

Maybe, after the holiday festivities are over, in the calm of the new year, you will consider sharing some of your stories with us.

Introduction:  I am Rebecca, Eliza’s mom.  She is 11 years old.  We live in Virginia.

(Fun fact:  Over the past 11 years, we have lived in 4 states.  Eliza was born in California.  She received early intervention in California and Indiana.  She has attended schools in Indiana, Kentucky, Florida, and Virginia.  Out of necessity, I have learned a lot about the differences between states in early intervention, early education and public school services. And, BOY, are there differences.) 

Here she is at about 11 months old.

 

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

Eliza is a social, curious and loving kid. She loves to be near other people, especially other children. Listening to other children playing makes her very happy. Her older sister is her favorite person on the planet. Eliza’s dad can make a noise that makes Eliza giggle like crazy every time. Her favorite activities include going for a walk, swinging, listening to music,  swimming, and jumping on a trampoline.  As a family, we go to the park and take long walks outside when weather permits.  We also take her to the pool as often as we can.

She LOVES music.  We spend a ridiculous amount of time changing the songs on her IPad or her CD player.  If I never hear Waterloo by ABBA again, it would be too dang soon.  I have Ziggy Marley’s Family Time album playing in my head right now. Also, I think we paid for Laurie Berkner’s car by incessantly playing her YouTube videos.  You’re welcome, Laurie Berkner.  My older daughter and I can sing a Laurie Berkner medley at any given moment.  Not everyone can say THAT, now can they?  Silver linings and such.

When did you first learn about CVI?  How were you given the diagnosis?

We knew before Eliza was born that she would have some challenges ahead.  We just didn’t know exactly what those challenges would be.  We were given the grimmest prognosis during the third trimester of my pregnancy before we even got to meet her.  That’s another story entirely.

At 4 months old, Eliza wasn’t tracking anything.  We took her to a pediatric ophthalmologist who called it  Delayed Visual Maturation and told us her vision would eventually develop normally.

“Don’t buy trouble,”  he told me. (Hmmm, well,  Dr. Expert Guy Mansplainer, maybe I’ll just rent trouble and take it for a test drive.

CAN I JUST SAY HOW ANNOYING and CONDESCENDING THAT PHRASE – Don’t buy trouble – IS? 

How many times are mothers of children with special needs or medical issues dismissed by a doctor who “knows better?” )

Which leads me to the truest thing I have ever seen on the Internet.

A neuro-ophthalmologist assessed Eliza’s poor vision at 9 months old.  He diagnosed Cortical Visual Impairment and Optic Nerve Atrophy.

We received a diagnosis, but, we also got the expert opinion from the neuro-ophthalmologist.

His expert opinion:  CVI may improve.  It may not.  There is nothing you can do about it.  Wait and see. Take her home, treat her like a blind child, and come back to see me in a year.  

And, what do we know now – 10 years later?

He was so very wrong.

I did not know how wrong he was, but, I could not accept that I would just go home and do nothing.  Just wait and see?  Moms do not work that way.  My heart could not accept his “expert” opinion.

I began researching CVI.  I bought Dr. Roman-Lantzy’s book.  I emailed her.  We met her in a hotel room in California where she was attending a conference with her husband, George Clooney.  (He loves it when I say that.)

Slowly but surely, we learned as much as we could about CVI and made accommodations to Eliza’s home environment.

AND, a year later, after we had worked on developing Eliza’s vision at home, when we followed up with the same neuro-ophthalmologist, he had this to say:

“I do not understand how her vision has improved so much.  I would not have believed it if I hadn’t seen it myself.  I don’t know what you are doing at home, but keep doing it.”  

This was when I handed him the copy of Dr. Roman-Lantzy’s book I bought for him.

I told him I knew he couldn’t “fix” CVI.  The prescription for CVI is educational modifications and strategies specific to each child’s unique learning needs.  It is education for parents, caregivers, and teachers about how the child has access to the world.

I told him I did not expect him to know how to address CVI, but I did expect him to stop telling parents to “Wait and see. There’s nothing you can do.”  I expected him to tell parents about educating themselves about CVI and to expect improvement.

He is still speaking to me, so I think it turned out okay.

Does you child have other diagnoses?  Yes, microcephaly and pachygyria of currently undiscovered cause, CP, epilepsy, global developmental delay, autism (age 4)

How is/was your early intervention experience?  How much time do you have?

A decade ago, there was very little consistent information about CVI on the internet.  Dr. Roman-Lantzy’s book was still new.  None of the early interventionists in vision loss in California had heard of CVI.

When we moved to Indiana when Eliza was 2 and still eligible for another year of early intervention, I discovered that Indiana did not have ongoing early intervention for infants and toddlers with vision loss.  Just didn’t have it.

Indiana offered families of young children with vision loss a yearly – roughly 2 hour- consultation from one teacher.  A fantastic teacher (Miss Annie from the Blue Bowl Story), but ONE teacher, nonetheless, for an entire state.  She had a caseload of over 300 families.

HOW IS THAT OK?  (It’s not,  but that is another story entirely.  That one has a happy ending, though, for another time.) 

Did I mention –

I did the best I could to inform the early interventionists and therapists we’ve had over the years about Cortical Visual Impairment and the importance of ACCESS for children with vision loss.

ACCESS is what it is all about – whether the child has low vision from another diagnosis or CVI.

No therapeutic or educational program is going to work for your child if your child cannot access it. Yes, I’ll keep saying ACCESS until I’m blue in the face or every child has actual ACCESS to learning whichever comes first.  (A bluish tinge is more likely I think.)

Imagine you are sitting in a room and the answers to all of life’s most important questions are written on the walls around you – glowing in golden paint.  But, when you open your eyes, you see squiggles, shapes, and lines.  It could be hieroglyphics for all you know.  It has no effect on you whatsoever.

It does not matter how much brilliant, life-enhancing, brain stimulating information is around you, if you can’t reach it.

This seems like common sense.  It is.  But, it is astounding at how many typically sighted folks struggle to learn this lesson.

How is CVI being addressed in your child’s school setting?  

I have been the person who has brought up CVI and the issue of access at every IEP meeting we’ve had in every state we’ve lived in.  In her current placement, it has taken me the better part of 3 years to get CVI acknowledged, and to get the school district to agree to getting training for teachers, TVI, and support staff.  It is an ongoing process.  There are ups and downs. I’m learning a lot.  That is all I’ve got right now.

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

Honestly, I wish that I had spent less time seeking out therapy after therapy.  I wish I had had regular access to an experienced TVI early on in Eliza’s life who could have told me to slow down.  I wish I could go back and tell myself that no one has all of the answers here and to trust myself more.

I wish I had known that the love and bonding time we had were as important as any hour spent in a clinic.  I wish we spent fewer hours in a clinic and more hours laying on a blanket watching the clouds float by.  Okay, technically, I’d be watching the clouds, but we’d be doing something together.

I also wish I knew as much about CVI as parents today know about it. There has been a lot of new, incredibly useful information to come out of Dr. Roman-Lantzy’s years of study and research, the work of Dr. Gordon Dutton, and Matt Tietjen’s What’s the Complexity framework.

I wish I had asked for more help.  I wish more help had been offered.

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

You are not alone.  There are resources available.  There is a community of parents who have faced similar challenges.

Be gentle with yourself.  Be gentle with your child.  The foundation of any child’s success is the love and trust that grows between a child and her parent or caregiver.  It starts and ends there.

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

This is a population of complicated children, many of whom have survived because of the miracle of modern medicine.  It is time to recognize them and to rise to the challenge of meeting their needs.  There are more children with CVI than you know.  We need your help.

Hopes and dreams? 

My hope for Eliza is to help her get so independent that she develops her own hopes and dreams and that she has a way to tell me what they are.

One of my dreams is that every child with vision loss (whether or not the diagnosis is CVI) gets the educational support she needs from an early age to become independent, productive, and joyful.  Here is my definition of JOY  by the way.

 

P.S.  It would also be great if  no pediatric ophthalmologist or neuro-ophthalmologist ever again tells a parent of child with CVI that there is nothing she can do.

Maybe we will work on that in 2018.  Hmm?