Up and Moved, Part 2ish

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

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

Sometimes, for fun, I do laundry.

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

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

And everything just sort of spirals downward from there.

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

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

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

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

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

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

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

The phrase still applies.

IEPs.  Boy, have we had ’em.

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

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

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

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

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

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

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

top09-kellyclarkson.

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

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

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

Then, I take a nap in my car.

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

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

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

 

 

 

 

 

Up and Moved, Part 1 of ?

Hello Fellow Families of Ridiculously Attractive Children who happen to have been identified with Cortical Visual Impairment!

I have thought about writing a post for so long.  There’s so much to say and so little time to get it right.  I judge myself and it doesn’t get done.  We are in a time of transition.  I keep turning inwards into myself and asking the same questions without new answers.   There is a familiar feeling of despair nagging at me.

I woke up this morning with an idea in my head.  I am going to stop judging myself and get it out there.

I may need some serious help here.  I will get to that eventually.

I spoke to my aunt yesterday and I found myself repeating my mom’s favorite saying, “I always do things the hard way.”  I used to roll my eyes when she said that.

Now, I have come to understand that when you have a child who is one in a million (quite literally) the hard way is often the ONLY way because you are breaking new ground and learning as you go.

But, not always.  My mom could have asked for help more often.  The results may have pleasantly surprised her.

The most important lesson Eliza has taught me is that asking for help can bring you information and support you never thought possible.  And, if it doesn’t, no harm done.  I’m used to doing it the hard way.

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Two months ago, we up and moved.  (“Up and moved” is a particularly Southern phrase that implies doing something quickly.  Which is true.)

Our family’s life circumstances had shifted significantly.  My older daughter was about to start high school.  There was nothing keeping us in the state of Virginia.  I had been taking Eliza out of school half days to do private ABA therapies for various reasons.

I could not sustain the schedule of creating and maintaining an educational and behavioral program for her.  It was more than one person could do.  I didn’t feel particularly successful at it.

I am used to this feeling – the need to find someone who understands her better than I do.  Who knows HOW to teach her to communicate and to engage more with the world.  I am used to fighting battles and asking for more than IEP teams think is necessary.

In this instance, I needed to choose my battles and look at the big picture.

Eliza turned 12 this summer.

We needed to think about what we want her life to look like at 22 when she ages out of the school system.

We started entertaining where we would go if we could go anywhere.  Eliza would need to be in a state with good educational opportunities, a strong support network and good transition services for when she becomes an adult.  My older daughter should be able to start and stay in the same high school.  My husband and I would figure out how to make this work.  That’s what parents do.

So, we jumped, er, moved.  From Virginia to a state that rhymes with Smassachusetts.

Two months ago.

My husband, my older daughter and I packed and carried our house out the front door and into two Pods.  We made the trip to Smassachusetts and back to Virginia several times in two weeks.   It is not an exaggeration to say there was a little blood, so much sweat, a few tears, and a recurrence of carpal tunnel syndrome.  We went through several bottles of Aleve.

It has been intense. Some days I HATE our stuff.  Who needs more than 2 towels?  Why do we have so many socks?  ONE pair of shoes should suffice, people!  One pan, one lid.  One fork, one spoon, one plate. Throw the rest away!  (I get that this is a 1st World Problem.  I do.  Forgive me.  Just had to vent a little.)

And, the files – the medical records and educational records from a decade plus.

A little light reading to relax me –

AHAHAHAHAHAHAHAHAHAHAH, wipes eyes and catches breath, AHAHAHAHAHAAHAHAHAAHAHAHAHAHAHAHAHAHAHAHAHAHA, sniff. Sigh.

Sorry, I couldn’t write that with a straight face.

It’s necessary to decide where to keep them for quick reference.  There is so much information – maybe I should let some of it go,

but,

there are still many questions with respect to what makes Eliza  Eliza.  

Maybe the answer is in one of the reports and science just hasn’t caught up to her yet.

Maybe someday SOMEONE will be able to help me understand what we’ve lived from a medical perspective.

For that, I keep the records, in bags by the bed for now…like the master of domestic organization I am.

We continue to dig out from boxes and piles of laundry.

It has NOT been an ideal environment for a child with CVI.

moving
NOT a great environment for a child with Cortical Visual Impairment

The first few days she was most content sitting in the laundry room clinging to my legs.  It made sense.  The room is small.  Everything is off white – a clean visual palette.  The vibration of the dryer was comforting. I sat on the floor with her several times those first few days commiserating with her that we had found the only spot in this new place that didn’t look like a tornado had hit.

Looking at the  piles of boxes and clothes and furniture exhausted and irritated me.  I couldn’t exactly understand how frustrating it was for her, however, the way she clung to me like a drowning person gave me a good idea.

We made her and her sister’s room first priority to give them a place of respite from the craziness of a move.   She is laying in her room listening to music right now.  And, now she’s shuffling down the hall.

I will pick this thread up again soon.  I would like to tell you what is going on and to see if you have any insight.

From my spot on the distant periphery, I see CVI moms shaking up the status quo and creating real change in their local education and support systems.

It occurred to me this morning that I am not alone anymore.

Until I can share more, I (the master of domestic organization that I am) have a handy dandy tip for families who have just moved.

When you move to a house without a single curtain or window shade and you are in a pinch….

window treatment
Quick and easy window treatment for families who up and move!

….Halloween decorations make GREAT window treatments!  And, in August, they are ALMOST appropriate for the season!

window treatment 2
Hello SMASSACHUSETTS! We are YOUR new neighbors, you lucky ducks!

“Who put salt in the water?” Incidental Learning!

Yesterday was Helen Keller’s birthday.  In honor of her extraordinary heart and intellect.  In honor of the brilliant teacher who opened up the world for her.  

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In Helen Keller A Life, author Dorothy Herrmann describes the moment when Helen experiences the ocean for the first time.  Anne Sullivan Macy, Helen’s teacher, explained later that she had anticipated Helen would be overjoyed by the full sensory experience of the pull of the tide and the wetness of the water.

What she did not expect was that Helen would emerge from the waves grimacing and coughing.

When she found her teacher’s hand, she demanded to know who put salt in the water? 

Clearly Helen had not expected that either.

Reading this passage made me laugh out loud.  It also reminded me that even when I try to teach E about the world, I will always have a lot to learn.  I have typical vision.  I experience the world visually, first and foremost.  I will leave out key details.

I keep learning and trying because I am her mom.  It’s challenging.  I forget to describe salient features.  I don’t always notice when she becomes still to listen to a fire truck that is passing because I’m rushing to get to the store.  I sometimes forget to give her a verbal cue before I give her a new object. We have lost so much time in her education.  There are still so many delays.  There is so much to teach.  I feel as though I am just now learning how to reach her. It can be very discouraging.

I find myself wondering how can I expect anyone else to try so hard when she is not even their kid?  Curling up in a fetal position in the closet seems like the only choice.  Then, I remind myself (clearly it’s quite busy in my head) that this is America.  There are laws and systems in place because parents like me – like you –  said “Enough already,” and demanded education for their children with special needs.

We are walking a path that has been paved by the parents before us. It’s a bumpy path with potholes the size of Texas, but, it’s a path nonetheless.  As parents of children with CVI, we have to create our own lane.

What we do for our children, and together for all of our children, will begin a movement to create a system of services for children with CVI when we say “Enough already.”

A key part of “Enough already,” is understanding and explaining the effects of sensory loss because CVI makes it challenging for children to receive visual and auditory information.  Even if your child is making great progress moving from Stage I to II to III in short order, your ability to advocate for access and why it is important remains the same. 

Here is some information you can use when you are discussing how your child with CVI learns.

The website for the National Center on Deaf-Blindness (https://nationaldb.org) contains a wealth of information about the effects of sensory loss and the importance of knowing how to teach children who lack incidental learning(Snuck that one in there on you.  If you are reading this post for the first time, please go back and read the earlier posts about incidental learning. It’s my favorite two word phrase! There’s a quiz later. Not really.)

The following is from the page, Developing Concepts with Children Who Are Deaf-Blind, written by Barbara Miles, M. Ed, and Barbara McLetchie, PhD. (https://nationaldb.org/library/page/1939)

Concepts are the ideas that give meaning to our world.

Here are some ideas that make sense from the perspective of the deaf-blind people who had them, but that might seem “odd” to someone with sight and hearing:

  • a boy thought “going home” meant the feel of a bumpy road and a series of turns in the car
  • a boy experiencing snow for the first time thought it was ice cream and asked for chocolate
  • a girl touched a wet leaf and signed “cry” (it felt like tears)
  • a girl thought food came from a mysterious place up high (it was always set down on the table from above)
  • a young man didn’t know, even after many years, that his family’s pet cat ate (he had never seen it or touched it as it ate, and no one had ever told him)

What each of these examples teaches us is how important it is to always be sensitive to and curious about a child’s perceptions of the world.

We need to continually ask, “What idea might she have or be developing about this experience, object, person, or place?”

If we want to help a child develop meaningful concepts, we must be willing to enter into a relationship and seek to understand the child’s concepts.

Children who lack sight and hearing or who have significant impairments in these senses, need to be consciously given continual access to the world and the society around them.

Most importantly, we must take the responsibility of providing experiences that will maximize the child’s opportunities to develop useful and meaningful concepts of the world. 

(“We” meaning the parents, yes, but also, the teachers, therapists, aides, and administrators who plan learning experiences for our children.)

It can be done.  Would there be a National Center on Deaf-Blindness if there had not been an extraordinary girl who became deaf-blind and an extraordinary teacher who made it her life’s mission to teach her?

I look to history to show us how to get where we need to go.

If even Anne Sullivan Macy forgot about the salt once in awhile, I can continue describing the world to my girl, making her experience books, and teaching her how to communicate through signs and technology

and

reaching out to you on the path we are making together.

 

 

Moms on Monday #22 / Hope from CT

Good morning fellow families of sparkling children who happen to have a diagnosis of cortical visual impairment!
Today, Hannah’s mom, Hope tells us about her feisty 4-year-old daughter and how she came to be diagnosed with cerebral/cortical visual impairment (CVI).

Hope and her husband, Rob, welcomed their first children, boy-girl twins at 24 weeks, 5 days gestation. When the twins were 18 months old, Hope was inspired to begin taking online classes at UMASS-Boston towards an M.Ed. in Vision Studies. She explains that by becoming a teacher of the visually impaired (TVI) she hoped to learn everything she could to help Hannah’s twin brother, Joseph. Joe was diagnosed with low vision due to retinopathy of prematurity (ROP).

As a student in Ellen Cadigan Mazel’s class on cortical/cerebral vision impairment (CVI), Hope began to suspect some of Hannah’s unusual visual behaviors may have resulted from her complex medical history following birth. Hannah had significant complications following birth as a micro-preemie weighing less than 1 lb 8 ounces including intraventricular hemorrhage (IVH) leading to post-hemorrhagic hydrocephaly (PHH) which required the placement of a shunt (when Hannah was 3 months old) to divert excess cerebral spinal fluid from her brain to her abdomen via a ventricular-peritoneal (VP) shunt.

Ellen Cadigan Mazel, Hope’s CVI class instructor encouraged her to have Hannah formally assessed.

Hope is writing today to encourage parents who suspect their son or daughter may have CVI to seek an expert opinion.

Hope also wants to encourage anyone reading this post to consider a career in vision studies. (Editor’s note:  Yes!  Yes!)

There is a growing need for TVIs, and COMS (Certified Orientation and Mobility Specialists) and there are openings in nearly every state.

Parents in or near New England can learn more about the UMASS-Boston program by visiting the website https://www.nercve.org/.  Also, federal grants are available at some learning institutions to offset the cost of the degree.  Parents could contact their bureau or agency for the blind for advice on finding a vision studies program near them.

Hope is extremely grateful to her son and daughter’s educational consultant from DORS-BESB, Gail Feld, who left a brochure about becoming a TVI for Hannah and Joe’s babysitter. As a result of finding the brochure, Hope found out about the program at UMASS-Boston. Hope also wishes to express her appreciation for Joe and Hannah’s educational teams for their optimism, enthusiasm, and innovative steps they have taken to give her children the access to learning which has brought them this far.

Hope's twins

Image:  Joe (a little boy in a blue t-shirt and jeans)  and Hannah (a little girl in a yellow hat,  pink t-shirt and jeans) take a break by sitting on the rear stairs of one of the vehicles at a Touch-A-Truck event.

What can you tell us about Hannah?

Hannah is a strong, loveable and capable little girl. Complications of premature birth left Hannah with hemiplegia of her left arm and left leg. She has not allowed this to slow her down one bit! She wrestles toys away from her twin brother, Joseph with ease and then gallops away. When Hannah sets her sights on something there is no stopping her. She has a drive to learn and a passion for letters and numbers. Her greatest strength is her memory. Her favorite person is her father, her favorite place is the beach or pool, and her favorite things are books and television.
We came to suspect Hannah might have CVI at around age 3. At a team meeting, her Pre-K teacher related a story about Hannah’s affinity for a yellow spoon (color) which she would reportedly always look for and gaze at for long minutes during free-choice play. At home, color seemed to be an important element for Hannah in objects she was attracted to. She would always try to get her hands on the can of Pam ® cooking spray. Whenever this distinctive yellow and red can was near the edge of the counter, Hannah would try to reach it. Once I learned about the ten characteristics of CVI from Ellen Cadigan Mazel, my professor at UMASS-Boston, I began to suspect there was more to this “quirky” behavior.

I asked Hannah’s TVI, Peggy Palmer, if she thought it might be worth assessing Hannah for CVI. As it turned out—it was! Hannah’s results on Dr. Roman-Lantzy’s CVI Range put her in Phase III. The best outcome as far as Rob and I are concerned is that strategies for supporting children with CVI in the classroom, once implemented, made learning available to Hannah even before she was formally diagnosed, at age 4, with CVI by her ophthalmologist, Dr. Tara Cronin.
The diagnosis of CVI gave our family and the educational team a rich context for understanding how color could be an anchor for Hannah and why complexity inhibited her learning. For me, I finally began to understand my daughter’s unexplained behaviors. For example, when we brought Hannah to the toy store or library to pick out something “new”, she would consistently gravitate toward books and toys she already had (novelty). Her preschool teacher came to understand Hannah could attend to the activities of circle time ONLY if she were provided with hands-on materials to ground her in the activities of the meeting. Hannah’s physical therapist came to see Hannah learns best when verbal directions are given first, BEFORE actions are modeled with NO talking (complexity).

Now that Hannah is approaching kindergarten age, the biggest hurdles she needs to overcome are social. Hannah struggles to name classmates accurately UNLESS she is provided with auditory or other clues as to their identities (prosopagnosia).

What lessons has motherhood taught you?

Hannah and her twin brother, Joseph have taught me I need to be a strong and confident leader—even on those days when I do not feel strong or confident. While it is important to listen to what medical and educational professionals have to say, at the end of the day you need to trust your instincts. You alone are the true expert when it comes to your child and no one has a greater interest than you in his or her wellbeing.

Hope and butterfly twins
Image: Hannah (a little girl in ponytails holding a green stuffed animal), Hope, and Joe (a little boy in a blue baseball cap and glasses) on his mother’s lap.  They are relaxing on a butterfly shaped bench at Magic Wings in Dearfield, Massachusetts.

Another thing Joe and Hannah have taught me is that all children can—and do—learn. Behavior is the result of learning. If a child has behavior—whether it is functional or not—it is the result of learning. As our children’s first teachers, and later as their educational advocates, we need to make sure there is a match between our child’s availability to learn (attention) and the appropriateness of his or her environment for learning (access).

What advice would you give the parents of a child newly diagnosed with CVI?

Be the “help” you think your family needs. I am proud of the parent I have become as a result of all the challenges my family and I have overcome together. I have grown into a question-asking, action-taking, resistance-battling parent. While I do my best to give everyone the benefit of the doubt, I seek my own answers and have—by becoming a TVI—gone to great lengths to become more capable of understanding my children’s visual diagnoses.

No degree is required to stay abreast of best practices in the education of students with visual impairment. Family Connect provides a host of free resources for parents of children with visual impairment and blindness.   Organizations like NAPVI and NFB’s POBC offer opportunities for families to network. Rob and I are most appreciative of our families, friends and co-workers who supported the four of us through the past few challenging-but-transformational years.

It has truly taken a village to raise our two resilient and amazing children.

Hope sesame place

Image:  Joe, Hope, Hannah, and Rob visiting Cookie Monster at Sesame Place

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Another piece of advice I have is this:  Believe in resilience.

One neonatologist, Dr. Gruen, assured us that despite their extensive brain bleeds (intraventricular hemorrhages) and ROP (retinopathy of prematurity) our children would go on to have remarkably good outcomes. He knew this, he said, because Hannah and Joe had caring, educated parents who were involved in their day-to-day care. He assured us that between early intervention services and lots of love, our twins would have “everything they needed”. And he was right!
It seemed, in those early days, that what the twins needed was something only “expert” others could provide. Day and night, nurses and doctors intubated, extubated, and re-intubated the babies who seemed to be in a constant struggle to survive. It was two weeks before their skin was deemed “intact enough” that we could safely reach a hand into their incubators and touch our own children. For ten precious minutes at a time, I held my hand flat on the back of one or another sleeping baby. Under that hand was a little person who found themselves in a world an entire trimester too soon. But they were here, and we would do our best to keep them here.

Before their eyes were even open, and before we were ever able to hold Joe or Hannah, Rob and I read to them through an open “port-hole” in each incubator. The host of readers grew to include grandparents and friends. As a result of all this TLC, Joe and Hannah have developed a deep love of books. On more than one occasion, each child has insisted on carrying a book into bed with them as one might a favorite stuffed toy or a blanket.

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If I could go back in time and give advice to my former self, it would be this:

1) Ask plenty of questions.

2) Accept resistance as a lack of understanding (of CVI).

3) Place trust in those who have earned it.

To this I would add: trust yourself above all others because—and believe me on this—no one cares more about helping your child achieve his or her best educational and medical outcomes than you and your family do.

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On Asking Questions

From the time they began to open their eyes in the NNICU, I was filled with questions about Joe and Hannah’s unusual visual behaviors which I did not ask. I was busy asking lots of other questions. I wanted to understand the implications of their high and low (blood) lab values, I would ask how long the treatment for NEC (necrotizing enterocolitis) would last and how long it might be before Joe and Hannah would be well enough for us to do skin-to-skin care.
Soon, I started to observe some unusual visual behaviors almost from the time their eyes were no longer covered with light-therapy sleep-shades. One twin was staring up at the lights while the other seemed photo-phobic. I had questions. I did not ask all of them. Why not?
First, I had the feeling I should accept my children’s unusual visual behaviors. I suspected that any vision differences were a consequence of their premature birth and were to-be-expected. When our children were born 16 weeks early, we were told each baby had a 50/50 chance of survival. They were fighting for their very lives, not striving towards the next developmental milestone. Three months had gone by and Joe and Hannah’s “age-typical” peers were still in-utero; there were no “age typical” peers to compare them to.
Second, I held back from asking all the questions I had because of a sense that I (or we) had already asked enough questions. I had the irrational belief that if I exceeded some perceived “quota” of parent questions it would in some way slow down the progress of the care-team. The meetings ran close to an hour as it was, and, after all, weren’t we lucky to even be permitted a seat at the table?

What does Hannah like to do? What are her favorite activities? What do you like to do as a family?

Hannah loves to laugh. She has the most infectious laugh and almost anything silly will make her giggle. She especially likes when grown-ups make mistakes, such as mixing her up with her brother, Joe and calling them by the “wrong” names. As a family we enjoy swimming and going to the beach to build sandcastles.

Hope and Hannah at Science Center

Image:  Hope and Hannah pose with Splash (a large colorful fish sculpture) on a recent trip to the Connecticut Science Center.

What do you hope to do as a TVI you were not able to do as a parent?

I look forward to working with children with CVI and other visual issues because I know I can direct them toward resources I know from first-hand experience to have been helpful. Not everyone is ready to “join” a parent organization but I want my clients to know they are not alone. Other people are going through the same or similar experiences. It is my hope to support those individuals who are ready by helping families find each other, network, and come to consensus about what needs to change at a systems level.

What do you worry about?  What changes do you feel are needed?

Right now, I think there is a need for more information about CVI to be made available to education professionals starting with TVIs. The UMASS Boston program made a course on CVI a requirement for all TVI candidates. Other programs need to follow suit. Personally, I would be happy to speak to pre-service teachers—special educators especially—to provide some training on the characteristics of CVI. As a parent of a child with CVI and a newly minted TVI I feel I could provide an overview of this public health crisis and its causes. My goal would be to introduce them to some modifications and accommodations which can be of help to all students but especially to kids with CVI. I plan to start by reaching out to colleges and universities close to where I live in Connecticut.

As a TVI and a parent I worry about children with CVI who need appropriate services but for whatever reason are not receiving them. Also, I worry about the state-by-state criteria for low vision services. I believe every child whose CVI impacts their access to the general curriculum should be eligible for low vision services regardless of the results of their visual acuity test. Some parents are hesitant to bring their children with CVI for a low-vision exam. They are fearful a near-normal visual acuity result could cause their needful children to be identified as NVI (Not Visually Impaired) when, in fact, they are impaired.

Big and little changes are needed.

The time is NOW and the power is US.

Thank you, Hope!  I absolutely agree.  I have learned so much from your story and your dedicated efforts to become an expert for your children. 

There is a national shortage of teachers of the visually impaired and certified orientation and mobility specialists.  This is part of the reason it can be so difficult to find educators trained in working with children with CVI.  With parent advocates/TVI like Hope, the time IS now.  

 

Moms on Monday #21 / Jennifer from PA

Good morning fellow families of radiant children who happen to have a diagnosis of cortical visual impairment.

Today, Rheanon’s mom, Jennifer tells us about her curious, joyful, 10-year-old daughter.  She also shares her frustration in her attempts to get Rheanon access to her educational environment.

Rheanon and brotherImage: Rheanon, a smiling girl standing behind her brother draped over a reverse stander.
Rheanon and famImage:  A smiling family (Mom/Jennifer, Dad/Greg, brother/Chase and Rheanon) in their Sunday best standing outside in front of a fountain on a green lawn.

What does Rheanon like to do? What makes her laugh? What are her favorite activities? What do you like to do as a family?

Rheanon is a happy go lucky little girl! She loves to take care of her babies (all 15 of them) and she absolutely loves when she gets to hold a real baby! She likes to snuggle with and talk to both me and her father. She likes to watch Daniel Tiger on PBS as well as play with her Daniel Tiger characters. Her favorite episode is “The Baby is Here”. She can recite the words and sing the songs.

She has the most infectious laugh and most anything silly will make her laugh. She especially likes when we say the wrong thing, such as mixing up Aunt and Uncle. We tease her about loving hot dogs and opening her own hot-dog restaurant because she does not like them at all, she is also not a fan of white socks or my favorite local pizza shop.

We like to spend time together as a family, playing games such as Zingo and Sequence, reading stories, & visiting family. In the summer, Rheanon loves to go for walks. Her favorite thing is to go to the local amusement park, Knoebels. She likes the spinning, fast moving, belly tickling rides.

Rheanon and t-shirt
Image:  Rheanon and her brother, Chase.  She is wearing a Start Seeing CVI t-shirt.

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

We learned that Rheanon had CVI when she was 1 year old, but we didn’t get a diagnosis until she was 2 years old.

We knew that she wasn’t ‘seeing’ when we brought her home from the hospital but the doctors in the NICU said it was because of her prematurity.  In time, we were told, she would be fine.

After a few weeks at home, I learned of the Infantsee program. I took her to our optometrist who said the said the same thing, “Delayed Visual Maturation”.

When she was 6 months, she was diagnosed with Infantile Spasms. All of our energy went to stopping the seizures. With an aggressive neurologist, special diets, and heavy duty medications, she had her last seizure 5 months later.

At this point, we were working with Early Intervention and had an in-home PT and Teacher. Early Intervention referred us to Blind and Visual Services. BVS then got us an appointment with an Optometrist in State College. It was there that Rheanon was diagnosed with CVI.

But, we needed a diagnosis from an ophthalmologist.

The first ophthalmologist gave no credit to the optometrist or the diagnosis.  He said we should, “take her to the mall to look around.”

We went to Will’s Eye in Philadelphia for tests to rule out everything else.

My child, who we adopted, who we weaned off of drugs, who just got done having steroids and hormone injections to stop her seizures, had to be sedated so they could hold her eyes open and rule out all other diagnoses when an optometrist diagnosed her correctly (and immediately) months before.

They ultimately gave her the CVI diagnosis.

We got a TVI after that, though very few CVI strategies were ever put into place. I didn’t understand it and her team didn’t understand it and there was not a push or a requirement for them to do so.

I took her to the Overbrook School for the Blind for an outreach program. Overbrook staff told us how smart she was and how much she would be able to learn.

I took her to Altoona where a team of teachers and therapists from the Western Pennsylvania School for the Blind met us to evaluate her. Most of her Early Intervention team came along – PT, OT, TVI, O&M, Teacher and EI director. We learned some strategies, but once we returned home, no one knew how to continue.

We had 2 assessments by Dr. Roman at WPSB and then 2 more assessments by a TVI after Dr. Roman moved on from that program. I would bring the assessments back home to the team but nothing ever came of them.

Rheanon is a smart girl.

Dr. Roman said at one meeting, “She is making you think she can see more than she can.”

———————-

Rheanon is now 10.  She attends her neighborhood elementary school and is in the third grade.

Her recent assessment with Dr. Roman puts her at phase 2 on the CVI Range.

I think that the members of her team are excellent teachers and therapists.

However, I do not think that they are knowledgeable in CVI, therefore I do not think that she is being supported properly.

I feel like I keep bringing things to the table to help and they keep getting pushed aside.

I feel like they are squashing her potential.

I feel like they don’t think CVI is affecting her.

I feel like our team has fallen apart.

I feel completely alone in the fight for her.

I am fighting for her right to learn. Her right to learn in the way she needs to learn.

And I don’t understand why this is so difficult.

I refuse to let her down, so we push forward.   We may lose old friends but we gain new ones.

—————-

Rheanon doesn’t always interpret things correctly, most often its people that she misinterprets. White haired ladies are grandma, tall men with deep voices are our neighbor Howard…

She knows her sight words well, but she struggles to read sentences.

Rhe on IPad
Image: Rheanon’s brother, Chase, leans over an IPad and traces sight words for his sister.

Her memory though –  Holy Cow –  I may never have to buy another planner.

I joke that she can work for the CIA someday because her questioning is persistent and she will find the hole in your plan.

Rheanon smile

Image:  Rheanon, a smiling girl with short hair in a red sweatshirt.

I won’t look back again with regret that we didn’t do everything we could.

 

And, Jennifer is changing the way Pennsylvania serves its children with cortical visual impairment.   She knows a thing or two about advocacy;  She works for the Arc of Pennsylvania.  (If you have never heard of the ARC, look it up.  There should be a local office near you.  They are there to educate, support and fight for you and your child with special needs.)

Jennifer has also paired up with another mom to offer presentations about how to work with children with Cortical Visual Impairment to local early interventionists. Can’t wait to hear how those presentations are received!

Thank you, Jennifer, for sharing your family and your clever and tenacious girl with us!

 

 

Hope has work for us to do

About 8 years ago, I attended a conference at a School for the Blind I will not name to learn about the options for transitioning visually impaired toddlers to preschool.

During a panel presentation of expert educators at the school, a grandmother sitting down the aisle from me raised her hand. She stood and asked about the diagnosis her grandbaby had just received, “It’s called cortical visual impairment. I’d like to know what we can do to help her.”
At that point, my daughter was going on 3 years old.  I had been researching CVI and how to modify our home environment for Eliza for a couple of years.  We had seen Dr. Roman-Lantzy a couple of times.   I was waiting to hear the experts recommend her book or mention that vision can improve with accommodations – with education. I wanted to hear what this panel had to say – maybe they knew something I didn’t.
Then, one of the experts told the grandmother and the whole auditorium of parents from all over the state that there was nothing she could do.  CVI might  improve. It might not. At her granddaughter’s young age, she would just have to wait and see and hope her vision improved.

Wait and see and hope.

Wait

&

See

&

Hope

?

If that is the most passive piece of advice you’ve ever received, then raise your hand – or wait – Don’t raise your hand:  Stare at your hand and wait for it to raise itself.

Yes, there are times when a situation is beyond your control and the only thing to do is to wait and see and hope.   I am familiar with these times.

There are also times when you create hope through your actions.

It’s important to be able to tell which is which.

The experts went on to the next question. The grandma sat down and folded her hands in her lap.  My jaw fell open. I wanted her to ask a follow up question.  I wanted her to ask why they thought there was nothing that could be done for an infant with CVI.

I wanted to stand up and tell them they were dead wrong.  Neuroplasticity makes an infant’s brain open to learning: It makes new pathways for functional vision possible.  The time to begin working with her granddaughter was yesterday.

I wanted to reach across the aisle – across the other families separating us – so I could pat her hand and tell her that she had not been given the right information.

 

I didn’t.

I sat in my seat and stewed. I didn’t feel as though I knew enough to raise my hand in front of a crowd to contradict the very people who were hosting the conference.  It was frustrating and surprising that a school could be giving wrong information to families.

I regret that silence.

I regret not sharing my story with that grandmother.

I regret not asking her for her story.

My silence did not serve anyone that day.  Because I stayed silent, that woman remained alone. Sitting down the aisle from her, I remained isolated from her. We left and went our separate ways.

I hope she went home and continued researching.  I hope she found the support she needed.  I wish it didn’t have to be so difficult to sort out accurate information about cortical visual information and how to support children with it.
I have thought about silence a lot over the years.

How silence keeps people separated.  How silence allows incorrect information to stand uncontested.

I have thought a lot about hope.

Being hopeful can be a very vulnerable place to live.  For every one person who agrees with you, there are twenty who look at you funny and wait for your high expectations to come crashing down.  For every one person who offers a hand, there are twenty who are quick to step back with a snide comment or a sigh.

Cynicism is easy.  It requires no effort at all. It is dull and lifeless.  Cynicism is fueled by fear – fear of exposure, fear of failure, fear of judgment.

Hope can be hard.  Hope requires energy.  Hope is fueled by love.  Thankfully, love is the easy part.  We have an abundance of it.


Sometimes, if you are lucky, you find words artfully put together that capture a feeling you carry around with you.  Finding them makes you feel less alone.  Sharing them makes your heart happy as though the words could stretch out to embrace someone the way they embraced you.

Recently I was lucky enough to stumble upon words that described my favorite kind of hope.   The hope I know what to do with.


“Though hope may sometimes seem like a luxury – frivolous, groundless, insubstantial – it is precisely the opposite.

Hope is elemental. It is made of some of the strongest stuff in the universe.

It endures.

Hope does not depend on our mood, our disposition, our desire.

Hope does not wait until we are ready for it, until we have prepared ourselves for its arrival.

It doesn’t hold itself apart from us until we have worked through the worst of our sorrow, our anger, our fear.

This is precisely where hope seeks us out, standing with us in the midst of what most weighs us down.

Hope has work for us to do.

It asks us to resist going numb when the world within us or beyond us is falling apart.

In the height of despair, in the deepest darkness, hope calls us to open our hearts, our eyes, our hands, that we might engage the world when it breaks our hearts.

Hope goes with us, step by step, providing the sustenance we most need.”

– Jan Richardson, The Cure for Sorrow

 

This is what is rattling around in my busy head these days, fellow families.  Some days, some years are like that I suppose.  Most days I do my very best to listen to what hope tells me to do.  There is work to be done.

Every day, I know that cynicism is a luxury I cannot afford.  I know that.

On the days, I can’t listen to the “to-do list” hope has for me, I am comforted by the fact that there are others who will listen for me until I can engage the world again with a broken and fierce heart.

This is me waving from my little corner of chaos to yours with affection and flowers of particularly popular colors I’m sure you can appreciate.

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Moms and Dads on Monday / Early Connections Conference 2018

 

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After a full day of presentations on a wide variety of topics and fun activities, parents of young children with vision loss came together in the school auditorium.  Before they left, I asked them to share something they were going to take away from this experience by writing it on a post it note and placing it on a whiteboard near the stage. Some folks wrote a single word.  Some wrote more.  Each sentiment is the beginning of a story only they can write.  A story with an ending they can control.

Maybe, a story they can share when they speak at the Perkins 50th annual Early Connections Conference.  Or 75th…. who knows?

post-its.png

Here are the words of the parents.

Hope

I hope every parent can be brave to fight their children

The kid with special needs was born to show us WE ARE STRONGER THAN WE THOUGHT

Support each other

I want to bring this amazing inspiration to my home, family, work, city, and country – all countries!

Stay strong.

We are all on a journey looking for answers and connections.  #FeedtheHope

If a 3-year-old understands this, then I need to up my game. #FeedtheHope

Be motivated by love, not fear.

Community

It’s okay to be sad.  It is okay to cry.  I got your back.

Inspiration

Be an involved dad!

Feed the good wolf

Be positive.  Life is good.

Medical imaging will not define what my child can do.

Don’t stop dreaming.

You’re a great Mom!  Congratulations Perkins

A future together

I’m not alone anymore

Inspired and thankful

Every parent has a story.

SO MUCH INFORMATION!  (I learned a lot.)

Expect miracles

Belief statement about your child

Knowledge

Advocate

Unconditional love

Balance is important.  Remember to stay connected.

Treasure the special moments

Rainbows always come after the rain

Every family has their own story about their amazing kids!

JOY!  To find it whatever situation – family, friends, church, work, community

Perspective

Faith in action!

Every day my life is inspired and strengthened by moments of joy.

It will get better.

There is a nice way to ask for commitment to follow IDEA.

Doctors needs sensitivity training.  Listen to your gut.

It’s OK.

Just keep swimming but know where you are swimming to!

Keep going!

Family connection is essential.

Be your child’s advocate.  The experts don’t always know what’s best.

Families are powerful, knowledgeable, and resilient.

You are not alone.  You are an amazing parent.  Don’t ever think otherwise.

I will choose how the story ends.

Teamwork

Faith

Never feel alone again.

C096C990-5ECD-418C-8788-F3A94D458B19

Image: An illustration of the words “We’ve Got This” held up by a group of women.  A baby sits on top of the words holding a rattle in the air.  Illustration doodled  by Ian Christy  (https://www.instagram.com/i.christy/)

———————————————————————————————————

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Image:  Ron Benham , Danielle Bangs on the left.  Teri Turgeon standing on the right of a whiteboard.  On the whiteboard is written “Happy 35th Perkins School!”  The whiteboard is covered in colorful post it notes.  

At the end of the conference, Perkins recognized the achievements of Ron Benham, who is retiring from his position as Bureau Director at the Massachusetts Department of Public Health.  Ron was one of the people in Massachusetts who understood the importance of early intervention and helped to build (and find funding) for the service system over 30 years ago.   Families of children with special needs benefit today from the decades of work of dedicated professionals like Ron Benham.

Bravo Ron!  Bravo Teri and Ed and Danielle and everyone at Perkins!  Bravo fellow families!  We are in this together!

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

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

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

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

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

“Just tell your story,” she said.

Huh.

This got me thinking.  And over-thinking.

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

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

to GI nurses asking me for her health history,

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

These are the people I see most frequently.

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

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

Here’s the first half.

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

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

And, it is a becoming.

Becoming a parent changes you.

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

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

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

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

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

It was just really hard.

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

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

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

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

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

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

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

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

This is fair.  (Uncool, but fair.) 

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

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

——————————————————-

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

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

——————————————————–

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

What would I want someone to say to me?

E and mom

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It is overwhelming.

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

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

It had to be said.)

HEY YOU.  This girl.

E with bib

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

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

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

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

This girl.

E in bouncy seat

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

She finds joy in the places you forgot to look.

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

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

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

HOWEVER,

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

SKY

Image:  Bright blue sky with white clouds

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

Remember that?

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

Baby girls

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

She is not broken.

You are, a little bit.

She loves you in spite of your broken parts.

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

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

Thank you for indulging me.

 

 

 

CVI Teleconference Call

Did you know that there is a weekly teleconference call for families of children with CVI on Tuesday nights?

This weekly call has been a source of knowledge and comfort for families like ours.  The moderator of this call is a kind and wise woman named Judith Millman.

I asked Judith about the history of this teleconference call that has been a lifeline to families across America for 11 years.

Why did the call come about?
The original idea for the Telephone Support Groups came from Dr. Alan Morse, the President of the Jewish Guild for the Blind (now LighthouseGuild). He felt that there were parents of children with visual impairment all over, particularly in rural parts of the country, who were isolated with no support systems in place and that the Guild had the resources and contacts to play a constructive role in their lives. About ten different vision conditions were targeted but CVI, being the single largest cause of children’s visual impairment became one of the first groups that was started (in 2007). It continues to be the largest telesupport group (by far) that LighthouseGuild sponsors.

How did you get involved? What is your background?
I am a social worker by training and worked most of my career in vision services. I started at the Lighthouse in Westchester Co. (White Plains, NY) as a social worker. By the end of my 30 year career there, I was the VP for the Lighthouse in the Hudson Valley, overseeing services for consumers in 7 counties. When I was about to retire, a colleague of mine, Dan Callahan, who was hired by the Guild to start the telesupport program, recruited me to facilitate the CVI group which was just about to be launched.

What are some common questions?
How can I get appropriate services for my child? The school district doesn’t seem to know much about CVI. Can you recommend an ophthalmologist who knows about CVI–mine doesn’t and told me that my child is blind. Where can I find a TVI and an O&M who really understand CVI? How can I help my child learn to use his/her vision? What strategies are helpful?

Have questions changed over the years?
I’m afraid that the questions haven’t really changed over the years. A positive factor is that more information is available via the literature, websites, distance learning courses, etc.

What are common themes in CVI that you don’t see going away – or that are increasing?
The tremendous role that parents have to take on to advocate for appropriate services–even more difficult in light of shortages in the field of TVIs and O&Ms.

What would you want parents of children with CVI to know?
You’re not alone.

CVI is the leading cause of visual impairment of children in the US. There are resources available, including a telesupport group, distance learning courses through Perkins School for the Blind, Dr. Roman’s book, webinars, etc.


If you are interested in joining the CVI teleconference call, email judithmillman@aol.com.

Thank you to Dr. Alan Morse for a wonderful way for families to create community across the miles.

Thank you Lighthouse Guild for sponsoring this call!

Moms on Monday # 18 / Lacey from MA

Good morning fellow families of delicate chubby cheeked children who happen to have Cortical Visual Impairment,

This morning’s Mom on Monday is Savannah’s mom, Lacey.  Savannah is leading her mom on a journey of joy, challenges, and education.

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Sweet Savannah Mae is my little six year old blessing. Oh, how I love everything about her. My journey in life is led by a little girl. She is paving the way. She is my tiny little teacher.

savannah

Image:  A smiling young girl in glasses

It’s been six years since Savannah was diagnosed with cortical visual impairment. That day will forever be stamped in my heart. Savannah was diagnosed with cortical visual impairment at 8 months old. Before the diagnosis, I will never forget her six month appointment at our local ophthalmologist. We had been referred by Early Intervention because as our early interventionist put it, “It’s like the lights are on and nobody is home.” Yikes!! I’ll tell you I’m a lot stronger now and I would never stand for that insensitivity, ever. That was a different time and a fragile place so I just went along with the referral.

Our local ophthalmologist had real vision concerns and wanted to refer her to a specialist in Boston. Savannah had a normal eye exam but he thought she might be blind. But wait, she sees her spoon coming and opens her mouth for food and she loves to look at the mirror above her infant swing. She can see. She loves to look at the overhead lights and she knows exactly where they are, even if the lights are off. It went as far as her dad and me calling our overhead lights, “her friends”. Due to her hydrocephalus, I always thought her eyes were just a bit different. They were aligned by this age, at least mostly, and not in the sun setting position due to hydrocephalus. Little did I know at that time.

It had already been a busy eight months, six weeks spent in the NICU and the appointments that followed, all while try to juggle work as a “medical mama”. My little warrior girl had brain surgery at one day shy of one month. Our schedule was filled with appointments, follow up, and just maintaining her overall care. On February 1st, 2012, her dad and I arrived at Boston Children’s Hospital. When our appointment started, Savannah was brought into a room for a preferential looking test (PLT). This is a visual acuity test for young or nonverbal children. Black and white stripes are presented and as they get thinner, an evaluator will determine if the child is looking towards the striped pattern. They use the stripes as an acuity measure which is calculated based on the size of the stripes the child can locate.

Next was a VEP, also known as a visually evoked potential. This test records electrical activity in the vision portion of the brain. The patient is positioned in front of a computer screen with electrodes strategically placed on the patient’s head.  The computer screen is a black and white checkerboard pattern.  This test evaluates vision functioning in the retina-to-brain nerve pathway.  Ophthalmologists might use this as a tool when considering the diagnosis of Cortical Visual Impairment (CVI). Not all children with suspected CVI have this as an option but we are fortunate enough to live in an area with advanced medical care.

Following testing, we met with a highly recommended ophthalmologist. She told us that our daughter was legally blind. She has “cortical visual impairment.” She told us, “We will register with Massachusetts Commission for the Blind and with Perkins School for the Blind.”  I tried listening but all I heard was BLIND, not truly knowing the definition, not truly understanding how this could be. She had already been through so much in her short life.

The visit concluded with a prescription for glasses. Savannah was prescribed glasses due to her astigmatism and because she was farsighted. She was getting glasses!! At eight months!! I couldn’t decide to dance in excitement with the thrill of a new accessory or cry because she was a baby and I didn’t know a single baby that wore glasses. I do have to admit she looked adorable in her first frames that were entirely too large for her delicate chubby face.

sav baby

Image:  An infant wearing glasses

The ride home was rough and filled with tears. Mark drove, as I couldn’t contain my tears. I called my mom to tell her and I couldn’t even get out a word because I was crying so hard. As we pulled into our narrow drive, Mark’s emotions were also evident as he hit the side of the neighbor’s house. It was devastating for both of us to get this type of news. The tears continued for a week. And then suddenly, I decided to embrace my journey.

A little more about my sweet little girl. My love for her is something fierce. We share a special bond. She has defined me into who I am today. She is a happy but feisty little girl. She smiles with her entire body, especially to the tune of a xylophone. She fills every crevice of my human body with joy.
My life with Savannah has always seemed complex but normal. It’s my normal. It’s everything I know about motherhood. It is 100% normal to us, even when it might not seem normal to others.

At birth, Savannah suffered a grade 4 brain bleed, periventricular leukomalacia suggestive of hypoxic ischemic injury. Savannah has a diagnosis of hydrocephalus and had a VP shunt placed one day shy of a month old. At almost five years of age, Savannah was diagnosed with Ogden Syndrome, an extremely rare syndrome also known as a Naa10 mutation. I mean, she is a diamond in the rough. And this kid sparkles. Savannah is one of 18 in the world with her exact mutation and 1 of 29 with a variation of the Naa10 mutation at this current time.

But let’s get back to her vision. I remember reading Little Bear Sees, which I highly recommend to any parent of a child with CVI. I remember thinking by her current age she would have near normal vision. We are part of the CVI endorsement so I can’t talk about phases and scores but I can tell you, any child with CVI faces many obstacles. Her vision is anything but typical, but it is what she knows and what we know for her. We are working hard to help decrease the frustration that comes with low vision and nonverbal communication. Along with her vision, Savannah is equally as complex. At this current time, she is not sitting, walking, or talking.

She is happy and loved fiercely.
That is what matters most to me as her mommy.

As a mom, I’m hopeful. I TRY to put the best interventions in place. Savannah continues to make visual progress, especially if food and beverage are involved. She is great at locating objects in her environment using her peripheral fields. I am working hard, as her mom and her advocate, to help her start using her central vision. Her team at school is also working toward this goal. Savannah knows some routines, and she continues to make strides in every area of development. She is an amazing little girl and I am so blessed to be on this journey in life with my sweet Savannah Mae.

sav with blocks

Image:  A little girl in glasses playing with yellow blocks on a lightbox

Savannah has really inspired me to be the best I can be for her. This journey we are on led me to graduate school. I completed my Masters in Education and I now work as a TVI with the youngest children. I am also very close to becoming CVI endorsed. I absolutely love helping children learn to use their vision but also supporting their families during this fragile time.

Savannah has improved in every aspect of her life but she is on her own chart, in every single way. I once read from a blog I follow of another child with CVI, “she is just inching along”. This is a phrase I like to use now.  Milestones are just so big and inchstones are much more appropriate.

Another mom in my Naa10 group wrote an article and hands down my favorite quote, “It’s like raising a giant question mark!” Yes, it totally is!!!

Thank you Lacey and Savannah Mae, this beautiful one-in-a-million girl! Your journey together is helping other families who face similar challenges.