Moms on Monday #9 / Meredith from IN

Good morning fellow moms and dads of delightful children who happen to have CVI,

Today’s MOM is Lola’s mom, Meredith from Indianapolis, Indiana.

Meredith has become a super advocate for her daughter and for young children with visual impairments in Indiana and Kentucky.  She is one of the driving forces behind Visually Impaired Preschool Services Indiana (VIPS Indiana), a non-profit agency that provides ongoing, best practice early intervention for infants and toddlers with severe vision loss.  She is also one fierce rooftop hockey player.

I got to meet Meredith and Lola through VIPS Indiana when Lola was a baby.  It is hard to believe that she will be 7 in January.

What does Lola like to do? What makes her laugh? What are her favorite activities, foods, etc?
Lola loves to do most anything that involves being outside. She loves parks, playgrounds, swimming pools and she especially likes to help walk the dogs around the neighborhood.

Lola adores her brother although sometimes she doesn’t understand what it means to give him space so she easily annoys him. Their relationship is much like any other sibling connection; they love each other one minute and are fighting the next. Lola especially likes clothes and shoes. We never really knew if Lola could identify colors since she can’t articulate it, but it has become very clear that yes she can absolutely differentiate colors as she hates pink and purple! She wants to wear blues and greens much like her brother. I’m so proud that she can now take off and put on her own clothes—I just wish she’d stop doing it 18 times a day!

Lola’s father makes her laugh like no one else. Now that she is paying attention more to her surroundings, she’ll start laughing when she sees or hears us laughing and the next thing we know—we are all laughing hysterically and we don’t really know why! It’s very sweet!

Lola loves almost all food but her favorites are cookies, pizza, chips, grapes, spaghetti and cereal bars. She doesn’t care for raspberries or watermelon. I wish her weight reflected her love of food—we’ll keep trying to get some meat on her bones though!

What do you like to do as a family?
As a family, we like to find playgrounds that are visually accessible for Lola. It’s sort of become a weekend hobby which is fun because we have learned where to take her and where to stay away from. She really needs high contrast in order to keep from getting bumps and bruises. We try to not keep her in a bubble since the world itself is not Lola-safe, but when she is on a playground that is all brown—for instance—she really struggles.

We also like to go to places like Monkey Joe’s or sensory-friendly gyms. Lola’s ability to sit and partake in an activity with us has increased dramatically over the last year so we’ll play her favorite game which is Hungry Hippo and she likes to color as well as play with Play-Doh. She also loves going to her grandparent’s house so many weekends are spent with them as well.

When did you first learn about CVI?
You know, I had a feeling something was wrong with Lola’s vision from the very second I laid eyes on her after she was born. I was always told that we would immediately lock eyes which indicated, “I am yours and you are mine” but Lola never looked at me. I gave birth to Lola in Costa Rica as my husband and I were living there at the time.  My nurses didn’t speak any English so I wasn’t entirely sure what to ask.

Lola’s Apgar  scores were perfect and the OB-GYN assured us that Lola was a healthy baby girl. We took her home and waited for the eye contact to kick in, but it never did. She sort of looked over our heads as if she was looking at a ghost standing behind us. She also wasn’t reaching for toys and she wasn’t tracking. My mother’s instinct kept telling me something was wrong and I was right.

Lola started to have infantile spasms when she was four months old and treatment to get the seizures under control began immediately. I started researching other symptoms associated with infantile spasms and I came across cortical visual impairment (CVI). When I read the characteristics, I knew right away that Lola had CVI.

How were you given the diagnosis?
As I mentioned Lola was diagnosed with infantile spasms by a neurologist in Costa Rica who was incredibly knowledgeable and supportive. When Lola was about seven months old, Dr. Luna gave Lola the CVI diagnosis yet we were less than shocked as we already suspected she had CVI.

Does your child have other diagnoses you’d like to mention?
Lola has an extremely rare genetic condition called Bosch Boonstra Schaaf optic atrophy syndrome. There are only about 40 in the world with the condition although as genetic testing becomes more available, researchers believe several hundred will be identified. So I thought Lola just had these two conditions, infantile spasms and CVI, I did not realize they were actually “symptoms or characteristics” of something bigger. As it turns out—they are. Lola’s seizures are under control, but she still has CVI, hypotonia, global developmental delay, nystagmus, autism, and more. She sounds complex and I suppose she is, but to us—she’s just Lola.

How was your child’s Early Intervention experience with regard to CVI? 
Are you ready for a shocker? After Lola completed her steroids for the infantile spasms, she was immediately referred to a therapy clinic. When we first walked up to the house (which looked like any other Costa Rican house), I immediately wondered 1) if we were in the right place and 2) how on earth would anyone in this place be able to help my baby? I was grossly mistaken as we met Lola’s very first physical therapist, Moises.

lola-pt-costa-rica

At Lola’s very first appointment, Moises stood at a whiteboard and explained exactly what CVI was to us—graphics and all! It was so comforting to have this information even as upsetting as it was. I learned right then and there something that has stuck with me at every turning point in this journey and that is; knowledge equals empowerment. When you give me information, I feel confident that I can do something with it. And so Lola began to see Moises once a week for PT, but working on her brain “learning to see” was always an integral part of her therapy sessions. She also began to see the occupational therapist, Melissa, who again, challenged Lola’s visual pathway during every single session. We couldn’t have asked for better providers during those early months and we are forever grateful.

Were your providers knowledgeable? Were they open to learning?
Moises and Melissa were more than knowledgeable when it came to CVI. They didn’t have to learn a single thing because they truly understood how CVI was impacting Lola’s development. It was rather impressive especially for being in a foreign country.

So as wonderful as the healthcare system was for Lola in Costa Rica, we knew that long-term it would be better for her to live in the U.S. We moved back to Indianapolis when Lola was just under a year-old. We immediately enrolled her in First Steps, Indiana’s early intervention system.

In First Steps, we had access to a PT, an OT and a speech therapist, but when I inquired about who would be helping us with Lola’s vision loss, I was told there wasn’t really anyone. I called around and found that information to be true and, ultimately, very shocking. How could we have better therapists for Lola’s vision in Costa Rica than the United States? It made no sense to me. But I wasn’t going to give up as I knew how important the first three years of Lola’s brain development was so I persisted until I found someone to help. I met Annie Hughes who was a Teacher of Blind/Low Vision and she worked for Visually Impaired Preschool Services (VIPS), a nonprofit that provides early intervention to young children with vision loss. Vision-specific home visits began and I finally felt as if we found exactly who we were looking for as Ms. Annie was more than knowledgeable!

How do you feel CVI is addressed in your child’s school setting?
Lola attends an Applied Behavior Analysis (ABA) center called Access Behavior Analysis in Indianapolis. While the therapists at Access had not worked with a child who had CVI prior to Lola, they were more than open to learning about it and how to set Lola’s environment up so she could thrive. After some lacking in the public school system, Lola will now have access to a Teacher of Blind/Low Vision who will consult with the center so that everyone understands Lola’s vision loss and how to make the proper modifications for her vision.

What do you know now that you wish you had known at the beginning of your journey as Lola’s mom?
This is a good question. I guess I wish I had let go more. That probably sounds ironic given that as a special needs parent, we may never truly let go, but I wish I didn’t worry myself sick so much. It was all so unknown and unexpected, but Lola was my baby so how could I not worry?

I just wish I would have spent less time immersing myself in the internet and more time enjoying Lola for exactly who she was. I wanted answers though. I wanted to know what her future looked liked. I always wanted someone to look in their crystal ball and tell me that Lola was going to be OK and, of course, nobody ever could. Sure I still worry, but I’m not debilitated by it. I acknowledge that some days will be tough, but they are few and far in between now and I’m very grateful for that.

I also acknowledge that CVI is not the only reason why Lola is delayed. Sure it is part of it, but I have now recognized that Lola is delayed because of her genetic condition. When she wasn’t walking at the age of three, I’d say, “She’s not walking because she’s visually impaired.” Now, I know that children who are completely blind can still walk even at an early age. I just wasn’t really willing to accept that she will always be delayed in some way, but that doesn’t mean she stops progressing. We celebrate the big, gigantic milestones as well as the tiny, most wouldn’t even notice inchstones! They all matter to us!
What would you tell a mother whose child has just been identified as having CVI?
You are not alone is the very first thing I would say. I think I would say please try your absolute hardest to not compare your child with others who have CVI (or even neuro-typical kids as well) as it’s just not healthy for you. I would also say that it does get easier over time. I remember when the ophthalmologist said Lola was legally blind and I about lost it, but what I realized is that Lola was still Lola. Those few extra words didn’t change a thing in that very moment. And honestly, having diagnoses will give your child access to MORE therapies and services. But I used to worry about CVI every day when she was little and now it’s not the first thing on my mind when I wake up. In fact, it’s the one of the last things I think about because CVI is just a part of our lives now.

What would you like for people who have never heard of CVI to know?
I would probably give them my normal CVI spiel about what CVI is, that many times CVI can improve over time (Lola can now see something as small as a raisin on the floor), that even though Lola’s vision has improved she still struggles greatly with her vision, and I’d like them to know that I have no idea how Lola sees the world. I’m willing to give just about anything to have a glimpse of how Lola interprets her surroundings, but I realize that may never happen.

Anything else? Hopes and dreams?
I think we are inundated with what society believes “success” of a child is. It means straight A’s, Honor Roll, graduating from high school, going on to college, finding a love to marry, having children, finding a career, and lots of other stuff in between. I’ll admit that I drank the Kool-Aid, too. When I was pregnant with Lola, my dreams for her were different than what has become her reality, but it’s OK.

View More: http://broadphotography.pass.us/howellfamily2016

Success for Lola means she’s happy, healthy, she loves, and she is loved. That’s all I want for her. Well, I kind of want her to move out someday, too, so I can catch up on nearly seven years of interrupted by Lola sleep!! But in all honesty, I just want Lola to be in a safe environment where people who know and love her look after her. I’m often asked if Lola will live with us forever and my immediate response is “HELL NO!” Now that’s not because I wouldn’t want Lola to live with us until the day I die, but how unfair would that be for her? She’s only six and she already wants to be out of the house so imagine when she’s 22. While she has her challenges, she knows she wants independence and we are going to honor that. She will always need help, but I will die more peacefully knowing that I have her support system in place so that she can live life without me. That’s so hard to write and perhaps I’m sharing too much, but my job as her mother is to think about her future. And Lola’s future will include lots of caring people because it does indeed take a village the size of China when you have a child with special needs.

 

Thank you Meredith and Lola!  

“What if Christmas…perhaps…means a little bit more!”

Good morning fellow families of adorable children who happen to have CVI,

This post is about gratitude for people who made my Grinch’s small heart grow at least 3 times this year.  (It’s just not the holiday season until someone quotes the Grinch.  You’re welcome.)

1. Javier

He is the kindest bus aide I have ever seen.  (And, believe me, I watch.) He does not know I am writing this, so I will call him “Javier.”  Javier greets us every morning with a big smile. He gallantly offers her his hand as they count the bus stairs together.  He asks her permission to help her scoot over and tells her when he is putting her bus belt on.  Eliza smiles when she hears his voice.  She takes his hand without any reservation.  She knows she is safe with him.  Because of this, I would offer this man a kidney without any reservations whatsoever.

Javier has seen me in the most mismatched excuses for sleepwear/sportswear as I roll out her chair every morning.  The man has never seen my hair brushed, folks.  He has also chided me for going out in the cold without a coat. In the rush of the morning routine, I hadn’t realized I needed one.  My mother would have approved.

Here’s the thing that GOT me.  One day, as Javier lowered the ramp to load her wheelchair, I noticed he was wearing a suit and dress shoes.  I thought maybe he had a job interview or a court appointment.   I didn’t think anymore about it, until a week later, when he wore another suit and tie.  I complimented his outfit again. He smiled, a little embarrassed by my effusiveness.

I realized the suit was a regular sort of thing, so I complimented him again the next week.

Javier shrugged and smiled.  “I just want to look professional.”

Shivering in front of our house, wearing mismatched socks, grubby sweatpants, and my husband’s t-shirt, I took that in.

I remembered one morning early this year when I went to Eliza’s school to watch how the bus transition was working.  Another bus carrying children with special needs was in line before Eliza’s bus.  The driver opened the door and came down the stairs to unload the equipment.

That guy wore a t-shirt that said – well, how do I put this?  The shirt had the emoji that most resembles chocolate soft serve (if you get my meaning) and it said “@#*t happens.”

What kind of message does a shirt like that send to the children and their families? And, to the other students?

Scowling, I watched “Mr. Soft Serve” lower two very complicated kids in wheelchairs to the ground without a word or a touch.  He transferred the boys like he was delivering boxes for UPS.

When Javier told me, a little sheepishly, “I just want to look professional,”  I realized the effort he put in to look his best for my girl and, I suppose, for me.

I had a sudden urge to hug this man and to make him president of the universe.  I did neither, since a restraining order from our local school system is one headache I do not need.  They already think I am weird enough.

hands

2.  5th graders rule the world

Eliza attends morning meeting at a 5th grade classroom in her school.  She goes in with an aide and her IPad or a Big Mack button to answer questions.

She also goes in with the widest smile I have ever seen on her face.

The students have welcomed her.  They call her by name when she comes in to see them and when they see her in the hallway.

Earlier in the semester, their teacher, Mr. K, and the principal allowed me to give a brief presentation to this class.  I talked about her diagnoses, especially CVI.  I asked them to identify themselves when they greet her because she has a hard time identifying people – even people she knows. I explained that she has difficulty with depth perception so she may walk unevenly and she might need to hold someone’s hand.   I told them it is a challenge for her to take in too much information – visual and auditory – at the same time.  I asked them to be patient with her and to understand that she can understand them, but that she needs more time.

Eliza’s teacher has been instrumental in scheduling the time necessary for these vital moments of social education for her.

This week, she sent me a few pictures of Eliza and some of the 5th graders outside during a break.  They were walking with her, holding her hand.

These are the first pictures anyone has ever given me of Eliza hanging out with a child who is not her own sister.  So, there’s that.  Where ARE the tissues when you need them?

Ifyou read an earlier post, you may remember that 3 of the girls have come up with a project to make a communication device for Eliza.  They prepared a PowerPoint for Eliza’s teacher who sent it to me.

The girls met with us to try different materials for the switches.  They showed me, um,  wires and things, and there was a laptop involved… ok!  I don’t get this stuff!

As I sat there and tried to understand the technology speak coming out of their mouths, I realized

  1. They will be leaders some day. 
  2. Their compassion and their technological expertise will create new opportunities for children like Eliza. 

Last week, they presented their project to the PTA who agreed to fund the materials needed to make this device.  

They met a kid.  They were curious.

They saw a problem.  They came up with a solution.

They found a way to make it happen.

We will see what happens next after winter break.  I am looking forward to learning from these young ladies who are as kind as they are intelligent.

Yes, when 5th graders rule with world, we will all be just fine.

hands together

Here’s to the people who are gifts in our lives.

They brighten our days just by caring and extending a hand.

 

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.

Baby_E[1]

 

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 see how it feels.

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.”  Too many.  ARGH.)

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

that which does not kill me

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?

000_0002 [325201]

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 – that which does not kill me

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 cannot 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. eliza in the car

 

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?

 

 

Adventures in Advocacy / NE AER / Part 3

Be a life long learner about CVI.

Be a life long learner about the brain.

Ellen Mazel, the CVI Teacher (https://cviteacher.wordpress.com), offers this advice to parents of children with CVI and to the teachers who work with them.

In her presentation at the Northeast AER Conference, Ellen shared information on learning assessments and intervention strategies from her extensive experience as a Cortical Visual Impairment Advisor and a Certified Teacher of the Visually Impaired.

Her audience primarily consisted of TVI and COMS, however, everything about the presentation resonated for me as a parent.  Watching presentations from teachers who know CVI always help me broaden my perspective and recharge my batteries.  It gets discouraging being the only person at an IEP meeting who knows what Cortical Visual Impairment is and how it negatively impacts my daughter’s learning.

Sometimes, after a particularly frustrating day, I think, maybe, I am just kidding myself.  Trying too hard.  My girl is a complex kid.  She is non-verbal and has an additional diagnosis of autism.  We are struggling to find a consistent method of communication.  We do not get a lot of eye contact.  Interaction takes time and effort.  It is hard to read her.  It is hard to know what she understands.  

It is all too easy to develop low expectations for a complicated kid like her.  I have fought against low expectations in IEP meetings and in teacher-parent meetings, yet I have struggled to learn how to reach her myself.  

Ellen’s presentation reminded me that this is an ongoing journey.

Regarding the perspective of the parent/teacher:

  • The importance of presumed competence and eye contact.
    • CVI masks cognitive abilityOur children are often not able to maintain eye contact.  (Children with visual impairments cannot be accurately assessed by traditional cognitive tests.  IQ tests are not going to work on this population of children.) 
    • Research has shown that children who do not maintain eye contact get far less social interaction and attention from caregivers and teachers.  Be aware of this tendency to interact less with a child who does not maintain eye contact.
    • Since we cannot tell what a child who is not maintaining eye contact understands, we have to presume that the child understands and continue to teach the child in an accessible way.  
  • If we expect improvements, we will get improvements. The minute we do not have expectations, we are guaranteed not to get improvement.
  • Read articles and attend presentations.  – Research about CVI and the experience offered by CVI Range endorsed teachers will be found at conferences and in journals before you will be able to find it in a book.  

Regarding IEPs and Assessments:

  • The CVI range endorsement is the beginning of your journey NOT the end.  
    • Yes, we need to demand a teacher who has completed the Perkins-Roman CVI Range endorsement, however, it is only the starting point.
  • IEPs need to say “brain based visual impairment,” when diagnosed, by whom, the score, and the result of the Functional Visual Assessment (as it relates to CVI).  
  • When assessing a child, Ellen uses the CVI Range (Roman), Dr. Gordon Dutton’s survey, and Matt Tietjen’s “What’s the complexity” framework.
  • Remember that the parents’ interview gives all important visual history – if vision has improved – consider CVI
  • Best practice accommodations and modifications should be based on the CVI Range score 
  • Strategies need to be embedded throughout the day
  • Ellen puts together a salient features presentation so everyone on the child’s educational team uses the same language.
  • As a consultant, she advises that the IEP includes a 1 hour in-service about CVI and a 1 hour in-service about how CVI affects this particular child
  • Embed the theory that there is something visual in front of that child all the time.
  • Use more CVI supports in place when developing weaker visual fields.
  • Introduce yourself and use the child’s name so she knows you are talking to her
  • Limit touching and moving children while they are trying to look.

I’ll end with Ellen’s explanation of “infused advocacy,” or teaching the children how to problem solve for themselves.

Parents and teachers can start teaching a child to become a self-advocate by teaching her about the characteristics of CVI and by including her in the process of making her own accommodations and modifications. When a child understands that how she perceives the world is different from other people, she can learn to articulate her unique needs. She could ask other children to say their names when they approach her to help her identify them.   She could explain to her mom that cluttered rooms make her feel anxious or scared. She could tell her teacher that new places are confusing and ask for extra time to get to know a novel environment.

This part of a child’s education, learning how to articulate her needs, is so important.  We spend so much time talking about the kids.  Listening to them (or, in the case of a non-verbal children, quietly observing them) is even more important.

This is a fascinating and busy time in the history of Cortical Visual Impairment.  There is a solid foundation of knowledge and a growing current of educational strategies and research.  There is an active and vocal community of families around the world.  There are teachers who can guide us!

At the center of all of this activity remains the children who have to be equal partners in putting together the puzzle that is their picture of the world. 

 

 

 

 

Moms on Monday #7 / Gunjan from PA

Good morning fellow families of glorious children who happen to have CVI,

This morning, we have the pleasure of hearing from Krish’s mom, Gunjan.  Gunjan has been a force in advancing the work of the  Pediatric Cortical Visual Impairment Society and in advocating to raise awareness about CVI . At last year’s PCVI conference, she and MaryAnne Roberto, Perkins-Roman CVI Endorsed TVI, gave a presentation entitled Partners on the Journey:  A TVI and Family’s CVI Experience from Birth to Age 3.   You can find this presentation as a webinar on the Perkins E-Learning site : http://www.perkinselearning.org/videos/webinar/partners-journey-cvi-experience-birth-age-3

Gunjan’s family recently hosted a painting fundraiser for the PCVI Society and raised $1,500.  Here are Gunjan and MaryAnne at the fundraiser.

gunjan and maryanne

Gunjan’s determination is proof that If every parent could make an effort to raise awareness about CVI, to fundraise for the PCVI Society, as well as to challenge their teams to hone their CVI skills, the world might be a better place for our kids.”

Introduction: Gunjan, Krish, 5, Pennsylvania

About your child:  Krishy loves to dance, specifically, what I would term as interpretive dance, because he moves with music so well.  He loves to watch Super Mario YouTube videos, in other words, watching other people play video games on YouTube. He “practices” playing the games on his IPad by moving his finger, as if he is controlling the game, not the player on YouTube. He loves amusement park rides and most of all, he LOVES playing with his older sister and twin brother.  As a family, we do typical family things, like no-pants dance party and going to the playground.

We rarely go to the movies. (We saw Coco yesterday.  Krish doesn’t have the core strength to hold the foldable seat down, so he kept getting smooshed in the seat, besides the vision issues, of course, and the cost of taking a family of 5 to the movies!)  We definitely avoid large crowds, super-noisy places and anything too physically strenuous (for me or Krish, ha ha) to avoid sensory overload. 

When did you first learn about CVI? I learned about CVI the first day that our soon-to-be early intervention vision teacher came to our home for a consult when Krish was around 7 months old.  I had told our physical therapist that Krish wasn’t looking at me. 

How were you given the diagnosis?  We had an amazing teacher of the visually impaired, the famous MaryAnne Roberto, who suspected the diagnosis, and guided us to Neuro-ophthalmology, the Low Vision Clinic, Ophthalmology, and Dr. Roman-Lantzy. 

Our Ophthalmologist gave us the diagnosis, even though she didn’t completely understand CVI.  She did recognize that she didn’t understand.  

Does your child have other diagnoses you’d like to mention?  Krish is a former 26 week preemie twin with failure to thrive, mild hypotonic cerebral palsy, chronic lung disease and GERD.

How is/was your child’s early intervention experience with regard to CVI?  (Were your providers knowledgeable?  Were they open to learning?)  We had an AMAZING early intervention experience.  Most of our team members were open to MaryAnne’s suggestions of how to improve his PT, OT, feeding, etc. sessions with CVI interventions. (I fired the one who didn’t get it!)  MaryAnne had consultation time to work interdisciplinary.  We were able to get services for vision without a diagnosis of CVI. 

How is CVI being addressed in your child’s school setting?  Krish is in his 2nd year of Pre-Kindergarten.  I wanted him to get extra time to start learning sight words and other kindergarten skills.  He is in a typical classroom.  Both his current TVI and classroom teacher have demonstrated time and again their commitment to making him successful.  We are starting to use the iPad as his primary learning tool in school to adapt books, etc.  He has an occupational therapist who is also an assistive technology consultant (winner, winner, chicken dinner!!) She is helping to prepare him on how to use the iPad independently for learning and to use the best apps. 

We recently had a meeting with Dr. Roman-Lantzy and have decided to overhaul Krish’s IEP to include a 1-to-1 aide, so that ALL his materials can be adapted. 

What I learned was, just because he can do it, doesn’t mean he should.   He can look at a book, he can color, he can look up at a calendar on a complex wall, but doing all the things fatigues his vision and he becomes slower and slower at visual processing.  He is quick to fatigue both visually and physically.  If we create a CVI schedule and adapt all his materials, he will not fatigue as quickly and can absorb more information. 

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

In the beginning of this whole process, I wish I could have seen who he has become today. 

I prayed and wished he would walk and talk and see, but it was hard to have hope. 

I was tired ALL THE TIME. 

Also, the CVI resources that exist on the Internet now are amazing.  Even just 5 years ago, I couldn’t find the quality information available now. 

I would tell a mom whose child was recently diagnosed that whenever you are down-trodden and feel like you can’t verbally describe another illustration from a book or talk about the salient features of a hippo, remember that the vision of children with CVI, especially those who start with appropriate interventions at a young age, does IMPROVE! 

Additionally, if your child’s team doesn’t understand CVI, if the IEP doesn’t have CVI strategies that are specific to where your child’s vision is on the CVI Range, if the people who are teaching your child are resistant to learning about CVI,  GET A NEW TEAM!  Do whatever it takes to fight for your child’s right to learn to see. 

What would you like for people who have never heard of CVI to know?  If you have never heard of CVI, I would tell you it is more common than anyone could imagine.  Every child with CVI looks different.  It is a diagnosis that crosses medical diagnoses. 

Hopes and dreams?  Anything else you’d like to add?  Attending the PCVI Society Conference changed my life.  It was inspiring to meet families, educators, and medical providers who are motivated to improve the lives of a child like Krish.  It made me feel like I could do something to advance the cause of CVI.  Also, having Dr. Roman-Lantzy and MaryAnne Roberto as part of our team is like having unicorn glitter in my pocket, just invaluable.  Lastly, if every parent could make an effort to raise awareness about CVI and fundraise for the PCVI Society, as well as challenge their teams to hone their CVI skills, the world might be a better place for our kids.  

Thank you Gunjan and Krish!  May we all find unicorn glitter in our pocket!

 

 

Adventures in Advocacy / NE AER / Part Two of Three

Hello Fellow Families of Delightful, Sometimes Exasperating Children Who Happen to Have CVI and Who Sometimes Knee You in the Neck,
Why yes, maybe E did wake up at 4:30 this morning and kneed me in the neck while climbing into my bed. Once settled comfortably (for her) on my chest, she leaned over to kiss my forehead about a dozen times. It was pitch black, so let’s just say she missed a few times. In my semi-consciousness, I dreamed I was being water boarded.

This is an accurate description of the power dynamic in our relationship.

Moving on.

I promised more information from NE AER.  This post turned into a doozy.  So, I am splitting it in two.
To recap: There were 6 presentations about CVI at this conference! This is a big deal. Bravo to the Co-Chairs of the 2017 NE/AER Program Committee, Sharon Marie and Martha Delaney for their development of this year’s CVI track.
(You may want to reach out to the folks planning your area’s next AER conference. You could ask how many presentations they will be having on Cortical Visual Impairment. Just a thought.)
I was present for Peg Palmer’s presentation “Assessing children with CVI using Dr. Roman-Lantzy’s CVI Range,” Dr. Christine Roman-Lantzy’s follow up discussion following her “Implications of CVI in the Development of Literacy, Language, and Social Skills” presentation, and Ellen Mazel‘s presentation, “Serving our students with CVI: Learning Assessments and Intervention Strategies.”

Here are some of my takeaways from this conference:

The Perkins-Roman CVI Range endorsement is a necessary starting point and here’s why.  (Good to know for future stare-downs with school administrators about the importance of proper training for the teachers who work with our children.)

Right off the bat, Dr. Roman-Lantzy asked the discussion group if any of them were unsure about the CVI Range endorsement.
As a parent, I was surprised by this question. I’m just glad an endorsement exists  to give teachers the skills they need to improve educational outcomes for our children. I was more surprised when a few of the teachers raised their hands.

Dr. Roman-Lantzy asked them why they had reservations.
One of the teachers explained that she knew several experienced TVI who did great work with children with CVI but did not have the endorsement. Some teachers did not see the point of the endorsement. Some thought the CVI Range endorsement was extra work – more hoops to jump through at their own expense- for teachers who already had substantial experience working with children with CVI.
Dr. Roman-Lantzy acknowledged their doubts and agreed that there are experienced TVI who are more than capable of working with children with CVI. She mentioned that she herself is not endorsed.  (My mind was blown.)
Her point – an important one – was that while CVI has been discussed over the years within the field of the education of children with vision loss, there has yet to be a rigorous, commonly accepted standard of training for teachers to work with children with CVI.

(This leads me to paraphrase Ellen Mazel. My apologies to Ellen Mazel. )

The 2 most dangerous teachers Ellen Mazel has ever met are
1. The TVI who has never heard of CVI
2. The TVI who has been to one workshop / conference on CVI.
Boy, did that resonate with me. I wonder how many of us have had a teacher tell us – “Oh, I know CVI. I took a workshop once.”
Surely, it’s not just me. I bet I’d recognize the slight indentation on your forehead where you banged your head on the table after hearing these words. It’s okay. I’ve got one too.

We have been affirmed by the CVI Teacher herself!

This was worth the whole trip to Vermont, including losing my driver’s license, and, the resulting extra security patdowns to get home.
Now some history on the development of the CVI Range endorsement.

(Use this when you begin advocating for your child by telling your school system that a CVI Range endorsed educator is a requirement for your child’s ACCESS to her education.)
The lack of a standard educational protocol for training TVI to work with children with CVI has been a concern for Dr. Roman-Lantzy for years. In recent years, she went to the associations that recommend topics of study for university TVI preparation programs.

She asked them to recommend that CVI be included, to no avail.

Then, she approached Perkins School for the Blind.

Perkins met the challenge of training teachers to educate children with the #1 pediatric visual impairment in America and
First World Countries
(and tomorrow and 9 months from now and 2 years from now).

It’s not going away, folks.

To address the growing need, Dr. Roman-Lantzy and Perkins collaborated to create the endorsement and other classes surrounding specific aspects of CVI.
For their willingness to address the issue of CVI, this CVI mom applauds Perkins and its President and CEO, Dave Power. Dave Power is also the father of a son with dual sensory impairments. It does not surprise me that a parent of a special needs child made the decision to move the CVI Range endorsement forward.
During the discussion session, Dr. Roman-Lantzy explained that “no one is getting rich off of the CVI Range endorsement.” There are administrative costs to running the classes which are offset by the fees.
She further explained that the creation of the CVI Range endorsement was a way to acknowledge that every endorsee has the same foundation of knowledge about CVI and has the ability to use the CVI Range accurately and effectively.  The endorsement means you know how to use the CVI range, however, knowing how to address the unique learning needs of every child identified with CVI is an ongoing learning process. CVI is a complex diagnosis. It covers a wide spectrum of children with varied abilities. Research is still unfolding.

Learning all things CVI is happening for all of us in real time.
Hearing this discussion, I can understand why an overworked Teacher of the Visually Impaired with too many children on her caseload and fewer available resources would be dubious about extra training for a “new” visual impairment.

She does not have extra time. She is being pulled in too many directions. Depending on the state and depending on the day, she may be expected to provide early intervention in the morning for an infant with albinism in a neighboring county; at lunchtime, she may be pulled into an IEP meeting for a 4th grader with nystagmus; in the afternoon, she may be transcribing civics homework into braille for a high school senior who is blind.
Changes in our educational system to give TVI fewer caseloads, more resources, more extensive professional development, and the time it requires to do their job well need to happen yesterday.
It is simply too much to ask these teachers to do more.

BUT,

nothing about having a child with Cortical Visual Impairment is simple. 
Until we can get universities to add CVI to their teacher preparation programs

AND,
until we can make sweeping changes in the system of educating children with vision loss

We have to ask.

Our children can’t wait. (Ellen Mazel again, everyone!)

Yet, they are waiting.

Every day a child with CVI sits in a classroom without appropriate accommodations – without ACCESS – to her education, she is losing learning time.

The awareness of time lost is the motor that drives CVI parents to ask overworked teachers to learn more about CVI.  It is why we ask them to help us give our children access.

To wrap up this post, I will repeat what I said to the TVI and COMS in my presentation.

We need you to believe that our children can learn.  

We don’t expect you to have all the answers.  

Help us find the answers.  

We have to start somewhere.  

Thanks to these formidable ladies, we have a starting point.  

 

CVI ladies

Moms on Monday #6 / Kathryne from LA

Good Morning and Happy Cyber Monday Fellow CVI Families and the People Who Love Us!

Today’s Mom on Monday is Kathryne from Louisiana, mom to “Little C.”   Kathryne manages Little C’s care while working and providing spot-on advice to many new mothers of children with complicated diagnoses on CVI Facebook pages.  She has also actively advocated on a local, state, and federal level to maintain Medicaid for children with pre-existing conditions and to improve educational outcomes for children with CVI.

Mom: Kathryne H. 

Child:  “Little C” / 21 months old 

Cause of CVI: Infantile Spasms, or, yet to be diagnosed genetic cause

Topic: Hospitalization and Regression

During the first 6 months after Little C’s diagnosis of Infantile Spasms, he was hospitalized at least 5 times before he was diagnosed with another rare neurological disorder called paroxysmal sympathetic hyperactivity. 

Hooked up to all those monitors, there is very little to do other than lay in bed, especially for a developmentally delayed child who cannot roll, sit, walk, etc. Any time we had an extended hospital stay we always ended up back at square one for therapies.  Rarely did we ever receive inpatient PT or OT, except for maybe 1 hour during the stay to show us what we should be doing (you know, if those cords and NoNos on the IVs did not make it impossible).  So, of course, there was regression after every hospital stay.  

After Little C’s CVI diagnosis, we purchased a set of light up LED pool toys.  The shapes change color, but can be set at 1 color which is perfect for CVI as kids move through the phases. 

They are called Floating Light Up GeoShapes – Color changing light for patio, pool, or home 4 pack.  https://www.amazon.com/dp/BOOKFMG12E/ref=cm_sw_r_cp_apa_6B5eAbPSZCGJV

During our first extended hospital stay we brought the sphere (dubbed the Ood ball by his Neurology team) to Little C’s hospital room.  

This was when I discovered that extended hospitalizations are the perfect time and place to exercise the brain for vision.   Most rooms are clean white and the scenery never changes.  The room is so dull and boring; it is perfect for our kids.  For the first time, Little C began to use his vision to look at something other than the ceiling.  The hospital even had Elmo, Big Bird, and Cookie Monster in the gift shop.  

We actually had a skill improve IN the hospital.  

So, naturally, what do you think happened during the next hospitalization?  We came prepared.  We purchased one of the lights that shines scenes on your house that is sold in stores at Halloween and Christmas.  You can find snowflakes, ghosts, or, in our case, just a blue kaleidoscopic image.    

When Little C was not storming, his room was an oasis with lullabies playing on the IPad and lights dancing on the ceiling.  And, of course, there was his Ood ball, Elmo, Big Bird, and Cookie Monster.

In spite of the hospitalizations, Little C has managed to improve from Phase I to Phase II. 

Unfortunately, I can’t say the same for his other skills. 

Thank you, Kathryne and Little C.   After a successful Thanksgiving, I wish you both better days ahead.  

 

Adventures in Advocacy / NE AER / Ellen Mazel / Standing Room Only, Part 1

standing room onlyThe Northeast AER Conference in Burlington, Vermont wrapped up Friday, November 17th.

Thursday, it was standing room only for Ellen Cadigan Mazel, M. Ed. CTVI. Ellen is the CVI Program Manager for the Perkins School for the Blind. (Her blog, CVI Teacher at wordpress.com is required reading for CVI parents, TVI and anyone who cares about a child with CVI.)

The information and discussions that arose from the presentations at NE AER should be another post topic.  I will do that one next.

For now, I will share briefly what I experienced and what I learned from discussions in and around the presentations.

First, it made my mom’s heart glad to see so much interest in CVI.  The fact that Ellen’s presentation was standing room only and Peg Palmer’s would have been if it had been in a smaller room was encouraging.

Many TVI, COMS, and administrators showed up to learn more about the condition that affects our children’s access to the world.

There were 6 presentations on Cortical Visual Impairment during the 3 day event.  Dr. Christine Roman-Lantzy was there!  I was present for an eye-opening discussion session. (Saved for Part 2) 

(I couldn’t stay for Matt Tietjen’s presentation on What’s the Complexity, but I really wanted to.  I highly recommend parents and teachers familiarize themselves with his work around complexity and literacy.  It is a perspective we all need to understand to help our children make progress visually and to understand what they are seeing. Check out the Perkins CVI Hub for the next class or webinar.)

This amount of information and discussion about CVI at an AER (the Association for the Education and Rehabilitation of the Blind and Visually Impaired) conference was unprecedented.

It would be great to see this kind of interest at every 2018 AER conference in every state or region of the United States and Canada.

Wouldn’t it? 

To share this opinion, you can find your state’s AER at http://www.aerbvi.org.

Find the president of your state’s AER and send her/him an email about your child, about CVI, and about the need for more teachers trained in understanding CVI.

You could ask them how we as parents can support our TVI in this training.  You could ask them what we need to do help make progress in getting CVI recognized as the #1 pediatric visual impairment in First World Countries. 

I mean, since it is.

Also, you can send the email to these folks too:

AER’s Executive Director, Lou Tutt, lou@aerbvi.org 

AER’s Chair of the Personnel Preparation Committee, Olga Overbury at olga.overbury@umontreal.ca

AER’s Chair of the (provisional?) Neurological Visual Impairment Committee, Susan Sullivan at ssullivan@aph.org 

Since I had given my presentation to essentially the same audience at Peg Palmer’s presentation the day before, I shared other parent stories from the previous post where I asked you what you would say to a room filled with TVI.

This is what I shared:

From Kathryne in LA:  “My theory on the lack of interest in addressing outcomes for CVI is that our kids have all been lumped as multiple disabilities.  Incompetence is assumed. That is not to say that blind children can’t have multiple disabilities, but CVI is more prevalent in the multiple disabilities class.  Since it’s more work other therapists and teachers ignore it. 

Addressing my son’s vision has given him more improvement in all areas.  More than any other therapy.  We are now starting to see improvements in other areas now that vision has improved.  

She asked me to point out that many of the other skills will follow if vision is improved.” 

 

From Anna in OH: Show care, compassion and patience.  If someone is asking for a CVI Endorsed provider, there is a reason.  

The good news about CVI is that we can do something about it.  Please accept the challenge to learn more about our children.  It will be worth it!

Please listen to the parents’ concerns and ideas.  Their children are their life, their whole world. Parents do know what they are talking about.

A passionate/trained/knowledgeable/driven CVI Endorsed provider is worth their weight in gold.” 

Then, I shared a couple of stories about the frustrations parents face when looking for appropriate educational services for our children.

One mom called her local university teacher preparation program for teachers of the visually impaired and asked if CVI was covered in the curriculum.  The head of the program told her no.  When she asked why, he said, We can’t be all things to all people.” 

One mom called her state’s School for the Blind when her son was identified as having Cortical Visual Impairment.  When she told them her child’s diagnosis, she was told, We don’t serve those kids here.  It’s too expensive to train our teachers in CVI.”  

If these 2 stories frustrate you, they should.  We have a lot of work to do to raise awareness and to raise our expectations of how our children are taught in their educational placements.

There will be more to come on this.

And, I wore this shirt. t-shirt

 

Brenda, the kickass mom from Seattle and the brains behind the blog and FB page, Start Seeing CVI,  made them and some proceeds of sales go the growing Pediatric Cortical Visual Impairment Society.

What a lovely holiday gift, if I do say so myself!   https://startseeingcvi.com/?s=T-shirt

More to come to wrap up NE AER.

Until then, Happy Thanksgiving!  I continue to be grateful for other parents who remind me that we in this together.

Because we are.

 

 

Seeking More Moms for More Mondays

Hello Fellow Mothers of Beautiful Children Who Happen to Have CVI,

We need more Moms on Mondays.

Okay, I do.  I need more Moms on Mondays.

I have thoroughly enjoyed hearing from all of the mothers who have contributed so far.  I learn something new every time a mother shares her story.

Thank you to Jessica, Mary, Subarna, Tiffany, and Lauren.  And, as always, thank you to Bernadette Jackel whose CVI mom experience can be found under The More Things Change widget on the CVI Momifesto home page.

I imagined Moms on Monday as a site a sleep deprived mom might find at 2 a.m. when she has finally gotten her child back to bed only to find that she is too tired and worried to get back to sleep herself.

Just over 10 years ago, when E was a baby, I felt more alone than I have ever felt in my life. The gradual realization of just how many challenges she would have to overcome pushed me farther and farther from “typical” conversations. I became less capable of small talk with friends or “cute kid” anecdotes shared over coffee with other moms.

(FYI New CVI Moms:  A lack of cute anecdotes, mind-numbing sleep deprivation, and an IV drip of caffeine for survival makes you less desirable company at the weekly playgroup.  Also, your new deep purple undereye circles and recent lack of personal hygiene don’t scream “I’m available for small talk!”

Then again, maybe you are remembering to wear deodorant and to rinse conditioner out of your hair more often than I did.  If so, winning! )

If you haven’t lived it, it’s hard to explain the impossible combination of utter physical exhaustion and adrenalin fueled hypervigilance that thrives in mothers of children with special needs.

I personally found that early morning hours were the worst for this cruel phenomenon.  My whole body ached from being awake for too many hours, however, when I closed my eyes, my mind reviewed notes from the day’s therapy sessions or dissected an earlier conversation with the expert of the day.  Sometimes I’d remember that I had an older daughter and was supposed to bring snacks to preschool in 4 hours.  Good times.

Basically, my off switch was broken.

So, I’d get up and start looking up my questions online, or rummaging through my pantry for preschool snacks. (Water chestnuts and saltines, anyone? Anyone?) Those 2 a.m. research times can be very dark and lonely.

Finding stories from other mothers in the middle of the night when you feel as though you are the only person carrying the weight of your child’s world on your shoulders may be a source of comfort.

It’s equal opportunity comfort as well because it also works for middle of the day, afternoon, and evening worrying.

AND, I think we all know that if there was a marathon for hypervigilance and worry, a special needs mom would win it hands down.

We.  Never.  Close.

We never close, but our befuddled brains play mean jokes on us.  For me, after another  night of consoling, bouncing, and worrying, I’d drag myself into a closet.  Then, I’d realize the closet was not the shower.  So, for a moment, I would forget just why I was standing in the closet.  Then, I’d shuffle off to the shower.

I would stand, head bowed to focus the hot water on my aching neck. Staring absently at the tiles on the shower floor, the Barry Manilow song “I made it through the rain” began playing in my head.  Every. Single. Morning.

And, no offense, to 70’s soft rock, or Mr. Manilow, but I am NOT a fan.

It seemed less an anthem, and more of a mean spirited joke produced by my declining mind.

Sometimes I’d find myself wondering which was worse, the new routine of 4 hours of nonconsecutive sleep, or the promise of being serenaded by Barry Manilow in the morning.  (Again, it’s not YOU, Mr. Manilow.  It’s me.)

This is your brain on hypervigilance.

But, I digress.

Please consider joining us in creating a place where moms can find a story they may relate to, or, at least,  friendly company in the chaos.

A place where moms can find themselves “respected by the others whooooooo got rained on toooooo and made it throooooooough.”

Forgive me.  I’m not proud of that.  But, it was right there.  (See how annoying it is?)

I came up with some questions you can answer (see below), or do your own thing.  There is no right way to share your story.

Send it to info@cvimomifesto.com.

I will notify you before your story is posted to confirm your permission to share.

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? 

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?

 

Thank you for your consideration.  Thank you for your company.

sorrows borne

Moms on Monday # 5 / Lauren from PA

Good Morning Fellow CVI Families and the TVI who love us (okay – put up with us),

This week’s Mom on Monday is Lauren, mother to 20-month-old Emma.

Lauren started a blog about her experience at Emma’s mother, Emma Bear’s Journey. Their unfolding story can be found at https://emmabear.org.

From the blog:

About me and Emma

I am a full time stay at home mom of an absolutely beautiful and amazing 13 month old girl named Emma.  She was born with hydrocephalus and later developed craniosynostosis during her first few months of life.  She’s been through more in her brief time here than most people will experience in a lifetime.  I admire her strength, resilience and fighting spirit.  This is her journey as well as mine.

Like a lot of children with CVI, Emma faces significant medical issues.  Their successes and challenges are very familiar to my experience as E’s mom.  She openly discusses many of the issues mothers of children with complicated medical diagnoses face – seizures, medical procedures, sleep deprivation, and the roller coaster of emotions that go along with all of this.

She has posted about a lot of CVI DIY projects that have helped Emma begin to use her vision.  The lighted tray and her method of simplifying board books are a couple of helpful strategies.

Lauren also moderates the closed Facebook group, Parents of Kids with Developmental Delays.  It is a great resource for parents to share and to ask questions.

Thank you Lauren and Emma!