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.”

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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.

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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!

 

 

Emma Bear’s Day: Phase 1-CVI Book

Lauren Seeger, CVI Mom, blogger at Emma Bear’s Journey, and moderator at Parents of Children with Developmental Delays shares a book she has created for children with CVI: Emma Bear’s Day: Phase 1 CVI Book.

Emma Bear's Journey

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Emma has CVI and we have had quite a difficult time finding any books that were suitable for her, given her visual impairment. We resorted to painting the background of books black, as to aid in making it easier for her to view. After going back and forth about it, we finally decided to create our very own CVI series. I’m so happy to announce that “Emma Bear’s Day: Phase 1” is available for pre-order next week. We will be shipping printed copies in early June! The book is $19.95 (plus shipping) and you will receive a FREE digital copy of the book with each purchase. This will enable your child to view the book on a Kindle or iPad. Please contact me at emmabearorg@gmail.com to pre-order your copy today!

“Cortical Visual Impairment (CVI) has been described as the leading cause of pediatric…

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Moms on Monday # 20 / Barbara from FL

Good morning fellow families of resilient and adorable children who have cortical visual impairment!

This morning we have the pleasure of hearing from Logan’s mom, Barbara.

logan and parents

Photo: Barbara, a woman with short dark hair, She holds the right arm of Logan, a little boy in a shirt and tie who is held by his father, Leo, a tall man with dark hair. They are all smiling.

When we first spoke, my intention was to ask Barbara the questions that other moms have been kind enough to answer for earlier Moms on Monday posts.   As any parent of a school-age child with CVI knows, it’s still IEP (Individualized Education Plan) season. That means CVI moms and dads across America are buying Tums in bulk and putting lawyers on speed dial in their never-ending search for a Free and Appropriate Public Education (FAPE) for their children. (It’s the law, by the way.) 

We didn’t get around to the questions during the first conversation because Barbara’s focus (like so many other parents of school-age children with CVI) is making sure his school team understands that cortical visual impairment requires accommodations throughout the day, extra training for staff, and modifications for school materials.

 


“Every obstacle that has been put in front of him, he has overcome.”

logan and glasses

Photo:  A little boy in a green t-shirt and sports glasses.  Smiling broadly, he is missing one of his front teeth.

Logan is 5 years old. His mom and dad recently attended the transition IEP meeting to prepare for his kindergarten placement.  The school team proposes placing him in a self-contained classroom for visually impaired children. Barbara would like Logan to be placed with his peers in an inclusive setting with appropriate support.  She would like to tell them to “stop putting my round peg in your square hole.”

According to Barbara, this year the focus is to make the school system understand how much they don’t know about CVI. They can try to contest the CVI Range, but they are required to give him ACCESS to his environment.

“We need him to be independent.  We don’t need them to feel sorry for him and think ‘Poor thing.’ We don’t want them to assume that he will never get a diploma. At the end of the day, he’s going to have to function in the real world.”

A teacher at the proposed placement told Barbara, “I’m not trained in CVI.  I’ve never had a kid with cortical visual impairment.”

At the IEP meeting, Barbara was told, “Our teachers aren’t required by law to become CVI endorsed.”

She replied, “But, you are required by law to teach my son.”

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And, this, fellow parents, is where we find ourselves in IEP meetings across America.  Our children exhibit some or all of the 10 characteristics of cortical visual impairment.  They require assessment so teachers will understand how our children use their vision and to plan accommodations to help them improve their functional vision.

The assessment is the CVI Range (Dr. Christine Roman).  The CVI Range was validated by the research of Dr. Sandra Newcomb (Journal of Visual Impairment and Blindness, 2010).  

Our children’s vision can improve.  This is an issue of accessibility not disability.  

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Logan is currently non-verbal.  Over the past 6 months he has learned how to communicate with an AAC  (Augmentative Alternative Communication) device.   During the meeting, Barbara requested that Logan’s teacher receive training in how to use AAC devices and how to communicate with children who are non-verbal, but this training was not added to the IEP.

In response, the school system requested that Logan be assessed through an educational evaluation by a psychologist.  Barbara, his mom, is also a developmental psychologist.  She explained to the school team that psychoeducational assessments are not appropriate for children with visual impairments.  (See post:  Death by IEP / Why Formal Assessments Do Not Work for Children with CVI or other Sensory Loss) 

Barbara would like a teacher who understands cortical visual impairment and how Logan communicates with his AAC device.

What I want educators to know about Logan.

“Logan enjoys a challenge.  He never gives up.  I want educators to know that teaching Logan is about giving him ACCESS to his education.
I recently saw a video of a mother whose daughter has cerebral palsy. The mother explained how hard it was for her daughter to get her body to do what she wants it to do. She said that people often misinterpret difficulty – the physical difficulty of getting your body to move the way you want it to – for an intellectual disability.
Logan has overcome every challenge placed in front of him. One time, when he was a baby and still not sitting up yet, I heard him laughing in another room. I went in to see what he was doing. He was laughing because he had gotten himself into a sitting position all by himself. From then on, I knew that laugh meant he was up to something.  He doesn’t give up.
School is supposed to offer him the least restrictive environment, not the most restrictive environment. At the end of the day, he is going to be in the real world. I want him to have experiences in the real world and, for me, this means being educated along side typically developing peers.”

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Introduction:  Logan lives in Florida with his mom, Barbara, dad, Leo, and 3 siblings, Lauren, Liam, and Landon.  Landon and Logan are twins.

What does Logan like to do?  What makes him laugh?  What are his favorite activities?  What do you like to do as a family? 

Logan is a very social kid.  He loves to interact with other people  both adults and children.  He loves it when people play games with him and sing to him, especially interactive songs like Wheels on the Bus.  He loves to play Peek-a-Boo.  He enjoys when I go outside and surprise him by looking in the window.  He is a very active kid.  He loves to dance and to jump around.

We do all the stuff other families do.  He goes where we go.  We go to the pool, play in the yard, go to museums and Disneyworld.

logan and siblings

Photo:  Four children posing for a picture with big smiles.  Three boys, Landon, Logan, and Liam  in colorful checked shirts and dark pants.  Their older sister, Lauren, in a red dress with a matching red bow in her long curly hair, stands in the middle behind Logan.

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

“Stumbling over diagnoses” has been a recurrent theme with Logan.

When he was 8 months old, he began sleeping a lot. When he woke up, his high-pitched cry was different than his usual cry. I remember taking videos of spasms that happened when he slept.

We had lots of doctor appointments back then since the twins were preterm.   I asked about the spasms and the high-pitched crying.  It wasn’t until we went to a new neurologist that we were taken seriously.  The neurologist took one look at him and told me to go to the hospital immediately. He was hospitalized with Infantile Spasms.

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I tried to get him enrolled in a special needs daycare through the state because he needed every therapy there was and my insurance wouldn’t cover it. It was a struggle to get him into the program even though he fit their criteria.

The head therapist suggested that I apply for Medicaid waiver funding for Logan. I told her we couldn’t because my husband works.  She told me Logan had one of those diagnoses where he would be eligible.
“What diagnosis is that?” I asked.
She printed out a list of eligible diagnoses.  One of them was cerebral palsy.

“He has this?”

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I have gotten used to going against the grain.
When Logan was smaller, we decided that Logan should have a selective dorsal rhizotomy in the hopes that he would become more mobile. His physical therapists advised against it. After the procedure, he began standing and even learned to use a walker.  He now walks without assistive devices.

The physical therapists are now recommending the procedure to other families.

logan the explorerPhote:  Logan in a t-shirt that says “Little Explorer”  walking with a reverse walker

 

A couple of years ago, I attended a conference on cerebral palsy and developmental medicine.  It was then that I first heard about CVI.  I thought, “Oh, this looks complicated.  I don’t know if this applies to him but I have to learn.”

Logan had been followed by a pediatric ophthalmologist because he also has strabismus and we were patching.  Yet, I had never heard about even the possibility of CVI from our ophthalmologist.

When Logan was 3 years old, I told our neurologist that I noticed things that didn’t “make sense.”  I found it odd that TV didn’t interest him at all.  His sister and brothers watched cartoons, but cartoons didn’t interest him.  I wasn’t thinking about vision.  I’m a developmental psychologist.  I was thinking maybe the cartoons were abstract and his thinking was too concrete for them.

The neurologist couldn’t answer my questions.  She said there were no studies on kids who don’t watch TV.

I took my newfound information about CVI to our pediatric ophthalmologist and asked him if it was possible that Logan had CVI.  He said, “Yeah, he has that.  I guess I’ll refer you to the Lighthouse for the Blind.”

I was floored.  It was like receiving a cancer diagnosis.  I didn’t know anything about CVI.  And now, you’re telling me my child is blind and you’ve never told me this before?

I asked my pediatrician how long the diagnosis had been in his file.  Apparently when Logan was 2 1/2 years old, the diagnosis was added to his file without informing me.

Anger wasn’t going to get me anywhere.  I knew I had to learn.  I found Dr. Roman’s videos on the West Virginia website  (http://wvde.state.wv.us/osp/vi/cvi/cvi-special-topics.html).

How was Logan’s early intervention experience with regard to CVI?

We didn’t know he had CVI for 4 years.  When I finally made contact with the Lighthouse for the Blind they sent someone to come work on a few things through the Blind Babies program.  However, once he entered the Visually Impaired program within our local school district, the Blind Babies program closed out the case.  In the school district, we were only give consultation services from the TVI.
Now that Logan is 5, the Lighthouse for the Blind is supposed to offer services for children with blindness and visual impairment. They offer blind children support with braille or technology 2 Saturdays/month. When I ask for services for CVI, I was only offered once a month.

What would you tell a mom whose child has just been identified with CVI?

First, I would say it’s not the end of the world.  CVI is treatable.  Their vision can improve.

You are not alone.  I haven’t found any other moms here of children with kids with CVI.  One of the things I have found is that Facebook can help you find a community and can help you find answers.  For example, I found out that the Texas School for the Blind was holding a conference on Phase III with Dr. Christine Roman-Lantzy.  There were grants for families to attend, but the families had to be from Texas.  I asked our Lighthouse for the Blind and Division of Blind Services if there was grant money for this conference.  They said no.  I paid to go to the conference.  I was grateful that TSBVI waived my registration fee.

At this conference, I got a lot of information.  I got to meet Dr. Roman.  I learned about the weekly CVI conference call sponsored by the Lighthouse Guild.  I learned that there are TVI who are willing to learn about CVI and work with families to help them learn more about giving their child access to their environment.

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

CVI is a lot more common than you think.  It is not a problem with his eyes.  It is his brain.  His brain has a hard time taking in visual information.

He is a very social kid.  Still, I have to explain to people at school that when you see him smiling and waving at you, he sees you, but he doesn’t know who you are.

What are your hopes and dreams for Logan?  

My hopes and dreams for him are the same ones I have for my other kids.  To be successful in school, to have friends, to be the typical kid he is.

I have learned to quiet that part of me that says “He can’t do it.  I have learned to quiet the skeptic in me.  No one knows his potential.  Including me.

I have to try.

It’s what moms do.

It is what moms do.  Every day.  Thank you Barbara for sharing your experiences.  You have a beautiful family.  

 

Adventures in Advocacy / Oxford Eagle

Adventures in Advocacy: A fantastic article about the Stearns family and their recent trip to D.C. to advocate for paid maternity leave and early intervention. Oscar and Jack’s parents made sure their legislators heard about their sons who overcame so much to be where they are today.

Bravo, Susan and Dan! Well done, Oscar and Jack!

Oscar and Jack

We were the cover story for today’s Oxford Eagle Gazette! Read here!

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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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Adventures in Congress

Oscar and Jack

So far today our little lobbyists have met with Senator Wicker and Representative Kelly. We were supposed to meet with Kelly’s staff but he called us in and met with us himself. I seriously doubt we are effecting change but we did get our message across about lifetime caps in healthcare funding and investing in early intervention services. Winning moment so far: Senator Wicker came into his constituent meet and greet and said “Good Morning!” To which Jack replied “Nice to meet you!” Senator Wicker said “that’s young Jacob Stearns from Oxford.” So we made an impression!

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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.

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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.

 

 

 

We’ve Got This! / Early Connections Conference 2018

Hello fellow families of marvelous children who have a diagnosis of cortical visual impairment!

On Saturday, April 28th, Perkins School for the Blind held its 35th annual Early Connections Conference.  The all day event offered “parents and professionals throughout New England” the opportunity “to network, share ideas and strategies for helping children with visual impairment from birth to age 7.”  (www.perkins.org)

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Image:  A poster for the Early Connections Conference

I had the pleasure of attending the conference this year.  According to Perkins’ Director of Community Programs and Conference Chair, Teri Turgeon, this year’s attendance totaled 106 parents and 38 professionals (including teachers of the visually impaired, speech therapists, and occupational therapists).

Even though my daughter is almost 12-years-old, I still have a lot to learn.  I found it hard to choose between the variety of presentation topics from the Expanded Core Curriculum to Issues with Complexity in CVI to What about the Dads?  From Has your child had a low vision evaluation? to CVI: Assessment, strategies, and implementation across the day to Strategies and resources to support children who are deafblind. And more!

(I went with Expanded Core Curriculum and CVI Complexity as these are two important pieces of the ongoing development of Eliza’s IEP and, really, her life.)

Historically, Perkins has been and continues to be the leader in educating children with ocular and cortical visual impairments.  With the Early Connections Conference, Perkins is a leader in supporting the families as well.

It was a warm and sunny Saturday in Boston.   The lawns on Perkins campus were green with new growth thanks to rain the day before.  Outside the Lower School Building, picnic tables and a bouncy house had been set up.  Inside, Perkins staff and volunteers were ready to hand attendees their welcome bags and help parents get their children involved in the day’s activities.  Vendors (including the Pediatric Cortical Visual Impairment Society) displayed information and products in the school auditorium where parents and professionals could browse while helping themselves to a continental breakfast.  (Well played, Perkins.  I have never met a bagel I couldn’t learn to love.)

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Tables set up in the Perkins auditorium.  The PCVI conference materials, a display with children’s faces and a table with a black tablecloth and a white drape with the PCVI logo over it.  A group of people stand at the table to the right speaking to another vendor.

Ed Bosso, the Superintendent of Perkins School for the Blind, and Teri Turgeon welcomed the families.  Ed shared that, despite a long career in special education, becoming the parent of a child with a visual impairment was a challenge for him.  He found comfort and information at a previous Early Connections Conference.  For him, attending the conference and meeting other families, meant you will “never feel alone again.”

Teri Turgeon (also the parent of a young adult with a visual impairment) told the attendees that she hoped the conference helped them “fill their cups.”  She explained that there are experiences in your life that are intersections and the choices you make can change the direction of your life.  She hoped that the conference would be an intersection for families to move forward.

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Image:  A drawing of the words “We’ve Got This” held up by a group of women.  One woman holds a baby.  Another baby sits on top of the words holding a rattle in his raised hand. 
Thanks to illustrator extraordinaire, Ian Christy for this fun take on the conference theme

The educational aspect of this conference was a big draw for me, but, what made my heart happy was seeing all of the children. A little girl in a pink t-shirt and holding a white cane expertly navigated in and out of a crowded elevator. Volunteers in red t-shirts took children for walks and painted faces.  In one room, a table of little girls, all bright colors, elbows, and ponytails, drew pictures while a grinning little boy tossed a ball with a teenager, or, rather, near the teenager.  The game seemed to be more fun to the boy if the young man had to chase the ball.

One young mother was hesitant about leaving her infant daughter in the nursery.  I overheard Teri tell the worried mom that when she (Teri) brought her daughter to this conference years earlier she had never even left her daughter with her grandparents. Hearing this conversation, I remembered the strong urge to get an occasional moment away from the never-ending responsibilities of being the mom of a baby with special needs.  And, I remembered the equally strong worry that something would happen if I wasn’t with her. In the first year, the only person I eventually left Eliza with was my mother, a retired nurse – after I had checked her references, of course. You can never be too sure.

The children!  That’s why we were there!  That’s why we are learning as fast as we can and asking questions and reading articles and advocating in schools and beyond.

I got to meet Savannah and her mom, Lacey (Moms on Monday #18 is a loving tribute to a beautiful girl and her dedicated mom).  I got to meet Adam and his parents, Lara and Todd.  (Lara assured me she will be a Mom on Monday someday.  This is in no way a blatant attempt to persuade her to answer those questions I sent her.  Not. At. All.)  These pictures were taken at the end of a long day and both kiddos were ready to go home.  They were very patient to let us take pictures. Adam gave me a very polite High 5.

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Image: A curly haired girl with glasses in a wheelchair between two smiling women
Image: A dark haired boy, sitting in a chair, leans over the tray of his chair.  His father kneels behind the chair with his arm draped over the back while his mother leans in on the boy’s left.  Both parents are smiling.  And, the mother has promised to be a Mom on Monday.

I will follow Adam’s lead and give you my own cyber High 5 to conclude this post.

More to come on the information given and stories shared at Early Connections 2018.

 

More of Ian Christy’s art can be found at https://www.instagram.com/i.christy/

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