Moms on Monday #2 / Mary from Ohio

This week we have the privilege of hearing from a tenacious mother and advocate from Cleveland, Ohio.  There are so many parts of this story that are familiar to me and are important for other moms to hear. She has a lot to teach us.

Take it away, Mary!

Dear CVI Family,

My name is Mary and I am a mother of an eighteen year old daughter.  That’s right, eighteen YEARS I’ve been at this.  I am tired and I am worn, but I haven’t given up.  

You see when my daughter was born we knew she had a very rare chromosome disorder that we couldn’t do anything to change.  We knew she had a very serious heart muscle issue that we couldn’t do anything to change.  She had feeding issues and couldn’t nurse. She threw up and was later labeled a failure to thrive.  She had this vision issue that we weren’t sure about.  She couldn’t hold her head up.  She couldn’t latch on or drink from a normal nipple.  Her delivery was an emergency C-section.  She was born not breathing. The cardiologist sent her home from the doctor saying they didn’t know what her prognosis was because her heart function was so poor.  

So, can you see that our focus was on her surviving?   And, way down the list was her vision.  

Eighteen years ago, CVI was such a new diagnosis that her vision issues flew under the radar of importance.  And, you don’t know what you don’t know.  

Finally, at 9 months we were told to go see an ophthalmologist who explained that my daughter had a visual processing issue that was brain based and that time might help.

(Does that sound familiar? And, I can’t believe parents are still hearing the same thing today. )

So, in the blur of everything else we were dealing with we accepted the “expert’s” opinion and continued on with helping our daughter to make developmental gains.  By this time, her heart muscle function had greatly improved and we were moving out of “survival” mode into helping her become all that she could become.

For years my daughter did so much therapy.  And, the puzzling question for so many of us was that she didn’t seem to have any intrinsic motivation to do or learn.  Why was that? Therapist after therapist were puzzled by it.  

By this time, we had seen another ophthalmologist who told us the same thing about her vision. “It’s a visual processing disorder.  Her eyes are physically just fine.  There’s nothing that can be done. Don’t waste your money on vision therapy.” Again, I took the “expert’s” word for it.

She learned to walk by age 4.  By this time, it was clear that she would have developmental challenges her whole life. Trying to help her was frustrating and puzzling.

But, like all of you, I have that “mom gut.” I knew what worked for her.  Plus, I took an awesome autism course that helped me understand that there is almost always a reason for every behavior.  I learned through this course that lots of children with sensory issues have trouble picking out what should be salient.  Yep, that’s the word that was used.  

So, still not knowing about the CVI, I began narrating to her to help her focus on specific things that might be salient.  She struggled in complex environments.  She didn’t make eye contact.  She looked above our heads.  She didn’t look right at things.  She looked and then looked away before reaching for things.  She avoided toys that had too much going on. (As I type this, it is painful because if I had only known back then what I know now, I could have helped her so much more.)  

But, you don’t know what you don’t know.  

I knew that when I talked her through things she was calmer.  She loved Elmo.  So, I would use Elmo as a way to get her to motor plan getting to things. (I put Elmo everywhere.)  There were so many things that I did because I knew they worked for her but I didn’t understand why they worked.

My daughter was in and out of public school.  She started in an inclusive preschool when she was 5.  It was overwhelming for her.  She would often “freeze”.  She didn’t engage. The words, “learned passivity” were used.  So, I blamed myself for causing her to freeze and not initiate.

The public school approach with my daughter was not right for her but it was all they knew to do.  There wasn’t even a vision specialist on her IEP team.  I didn’t know to ask for it.   My daughter was not making progress in the public schools.  Often she would make great progress at home over the summer and then go to school and the progress would stop.

Here are the things I began advocating for:

1)  Wait Time    

2)  Narrating for her to help explain situations  

3)  Quiet lunch with a few willing peers

 4)  A consistent one on one aide for her whole day  

5)  A study carrel for her to work.  

Don’t those things sound familiar?  But you don’t know what you don’t know.   I finally requested a TVI evaluate her as a part of her Evaluation Team Report.

I had heard about CVI by then.  I had Googled some of her unusual visual behaviors and CVI had popped up.  When I say popped up, it didn’t pop up like it does now.  There were a few, and I mean a few, sites and a few articles.

The TVI knew about CVI and even had a CVI evaluation kit.  He evaluated her and firmly explained that she did not have CVI.  There were too many things that she was able to do visually that were not consistent with CVI.  The expert had spoken and although I was doubtful, I didn’t question it.  After all, you don’t know what you don’t know.

After a few years of trying to make the school setting work for her,  I advocated for and got an outside placement for her at an autism center.  There was still no diagnosis of CVI but because the center was used to working with kids with sensory processing issues,  it was a better fit than the public school setting.  At this same time, I began taking her to a behavioral optometry place for vision therapy.  They recognized right away that she was using her peripheral vision and began working with her to use her central vision.  It was a vision therapy approach and it was a start.  She began to use her central vision in fleeting moments.  She also started to do very short tracking.

By this time, my daughter was about 14.  We had seen ophthalmologists, neurologists, a behavioral optometrist, and a TVI who had some knowledge of CVI and, still, no one had diagnosed her formally with CVI.   

I was beginning to up my research of CVI because there were too many things that my daughter did that were part of the characteristics.  After 14 years, I was tired of advocating for my daughter without any diagnosis or support.  So many times, I was told to let the “experts” know best.  I was tired.  And, I felt all alone.  

My daughter switched school placements at age 14.  Her school placement was at a mostly outpatient private therapy center.  They often brought in speakers to educate the therapists.  One of the speakers that visited was Dr. Roman.  One of my daughter’s school therapists was in attendance.  She called to tell me that she was sure my daughter had CVI.   

About 6 weeks later, at the age of 14, my daughter, myself and several of her therapists from her school placement went to Pittsburgh to see Dr. Roman.  My daughter was diagnosed on the CVI range as Phase II 5.25-6.  Thankfully, Dr. Roman said that it was remarkable how well my daughter had progressed even without the diagnosis.  

After all those years, the puzzle piece clicked.  I now knew what so many of you already know.  I knew why my daughter’s vision was so puzzling.  I knew that it was something that could be helped.  You see, I had always said that I knew that the chromosome disorder had caused an organic development issue that caused her body/brain to be formed differently.  But, I also kept saying that there was a part of her that seemed like it was being rehabbed.  There’s that “mom gut” again.  

So, at age 14, after years of advocating, fighting and so much frustration, there was finally a diagnosis. 

There was credibility for all the things that I had advocated for.  And, there was hope for the future because more than ever I knew how to help her.  I also had the hope that her visual processing would get better. 

Like you want for your children,  I  wanted her to become the best “her” she could become.  Plus, I wanted her to learn to enjoy her world, not be afraid and frustrated by it.   She seemed way smarter than she was able to show. 

We began the difficult process of teasing out which behaviors were because of cognitive challenges and which behaviors were because of her CVI issues or which were a combination of both.  You see, because everyone knew that she had cognitive issues, that is what would get blamed and so the supports given were for cognitive challenges.  

Now, I knew how to support her vision so she could continue to develop.   At the age of 15, after having a year of much more focused appropriate supports she had made great progress. She was still in  Phase II, but  had progressed to 6.25-7. Hurray for neuroplasticity! You see, you don’t know what you don’t know.  But, when you know, you can do better.  I was learning to do better!

At age 18, she is in Phase III 8-9.  She will always have cognitive limitations and global limitations.  I can’t do much to change those.  But, I can help her vision improve.  And, she is enjoying her world more.  I am still tired.  But, I’m not alone.  And, I’m grateful for this blog which brings us all together to share our stories and our experience.  

Thank you for your insight and your willingness to share what you’ve learned with us.