Moms on Monday #7 / Gunjan from PA

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

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

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

gunjan and maryanne

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

Introduction: Gunjan, Krish, 5, Pennsylvania

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

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

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

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

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

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

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

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

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

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

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

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

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

I was tired ALL THE TIME. 

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

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

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

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

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

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

 

 

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CVI Momifesto

CVIMomifesto is a blog dedicated to parent advocacy and community for families of children with Cortical Visual Impairment.

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