“Some kind of help is the kind of help that helping’s all about…”

Hello fellow CVI Moms and the wonderful people who teach and care for our children,

There are some days when my heart breaks and is put back together again by gratitude at the kindness of another human being.

You know those days when you try so hard and you think no one notices?

When you are the only one you know researching CVI providers in your spare moments while other moms are scheduling playdates.  When you add articles in neuroscience to your Favorites page for a little light reading, and create experience books (while mentally planning more family “experiences” that you can document and print out to make more experience books).  When you cram every possible detail into your brain about this neurologically based visual impairment that makes the world a confusing, overwhelming place for your child.

You become a confused, overwhelmed parent in the process.  And, you think no one notices.

Or, when they do, it is definitely not what you need.  I remember when E was a baby and no one was sleeping.   I was just at the beginning of understanding the list of diagnoses we had just gotten.   I was in over my head and trying to keep our lives somewhat functional.  A lot of that time is a grey blur when I look back.

Many days I felt as though I was drowning in plain sight.

Often, people I’d have conversations with would just keep on having their conversations. And, all the while I would be thinking, “I am drowning here. Can’t you see that?”  For the folks who did notice, many times their response was something similar to saying to a drowning person, “Hey, I see you’re drowning.  Here’s a book on building a boat.  You should really read it, assemble all of the necessary supplies, and build this boat  – you know – to keep yourself from drowning.”

Drowning folks do not have the time, energy or resources to build themselves a boat. Parents of children with complicated medical issues, including CVI, get through some days by taking it minute by minute, or second by second.   Surviving these moments in spite of the “help” offered by some becomes the only trophy you award yourself at the end of day.

Okay, so we can all agree, “some kind of help is the kind of help we all can do without.”  (Read Shel Silverstein’s poem, Helping, if you do not recognize this reference. I’ll wait.)

Before I tell you how my heart got broken and put back together again, I need to make sure we are all on the same page here.

Cortical Visual Impairment…

(Cerebral Visual Impairment, Neurological Visual Impairment, or “Rumplestiltskin” – when I’m feeling cranky about the ongoing debate what to name this complicated condition)

…is a condition affecting children of many varied abilities.  CVI is the result of many possible causes.

CVI is a term used to describe a variety of visual characteristics and the severity of these characteristics in a variety of children – some who are verbal, some who are not, some who are mobile, some who are not.  Every child is unique.  What every child needs is unique to her or him.  It’s a challenge to find common ground when discussing such a variety of children, abilities, and behaviors.

CVI is a spectrum.  This is one fact we can hang our pith helmets on.  It’s our spectrum.

As I share where my daughter falls on this spectrum, I hope that other parents whose children are at different places on the spectrum can relate.  Our children are complicated.   I celebrate the children who got to Phase III with relative ease.  I celebrate the infants in Phase I and their D-I-Y moms who are creating accessible universes for their little ones with PVC pipe and craft supplies.  I celebrate the children who can speak and read just as I celebrate the classmate on E’s bus who shows me the toy he brings to school on the bus every day.  CVI affects all of them.  I think they are all magnificent human beings, period.

CVI is a spectrum.   Where my daughter falls within this spectrum is that at 11, she is non-verbal (yet, loud as the dickens when she wants to be).  She is mobile.  After learning to walk with a walker at the age of 3, she eventually learned to walk independently within a year after that.

We went from Phase I to Phase II with me doing CVI accommodations at home.  By the time she was 3 years old and in Phase II, it was time to find the right school environment for her.  (See the post on Lego Trees to find out how much fun that was.)

We were seeing Dr. Roman-Lantzy every year.  When we went back just after E turned 4, her CVI Range score had actually gone down from the prior year.  Dr. Roman-Lantzy warned us that if we didn’t figure out how to communicate with her and help her use her vision, then she would develop behavior issues quickly.

That was a tough ride home.

Her visual impairment made attempts to learn communication systems very challenging.  She did not see well enough to understand signs and lacked the fine motor ability to do them.  I began to doubt whether or not she was able to understand and communicate.  Despite my attempts to educate myself on how CVI affects a child’s education, I found myself doubting her abilities.  (Doing the same thing I do not want her teachers to do.)

“Assume competence” is a popular phrase among therapists.  Boy, I have tried. Some days I was not successful.  Those were dark days.

This past year, after much trial and error (including much research to find the right speech therapist, a CVI consultant and thumb wrestling matches with school administrators in 3 different states), she has started to use a couple of signs and she is using some very basic communication devices. Finding a CVI consultant and working with an ABA team to use specific signs and pictures of actual objects in E’s life have opened up new possibilities for her.  We’ve turned a corner this year;  I finally see progress.  As she learns to communicate, I can also see that she has things to tell me and that it is very frustrating not to be able to do so.

I know in my heart that if we had been able to get her in a program and with a teacher and staff who understood CVI, she would be at a higher level of communication than she is now. I did the very best I could to learn as quickly as possible.  I did the best I could to bring CVI awareness and experts to the public schools we were in.   I have to forgive myself because I know I have done the best I could with the time and resources I have had.  I am still trying.

Okay, so now I need to tell you about the 5th graders who reminded me of the “help that helping’s all about.”

Over the past few years at E’s current school, I have been pushing for her to have more day-to-day involvement with her “typical” (sigh) peers.  She is in an ID class (Intellectual Disabilities, to the uninitiated) with other children who are non-verbal.  My point, for 3 years – at this school, has been, “How can we expect to learn any language if she spends the entire day with children who do not talk?  How can she learn to interact – verbally or non-verbally – with other children if she never gets to spend any time with them?” 

The responses I’ve received for the lack on inclusion have ranged from the uninspired “6th grade doesn’t do morning meeting.”  Huh.  Well, what about the other grades?

to the incorrect – “It’s a safety issue.” Huh.  For whom?  Isn’t that why we have aides?  And, have you heard about IDEA, by chance?

to the mind boggling -“We do have inclusion opportunities.  You just haven’t been here to see them.” Huh?  And, I’m just hearing about them now after asking for almost 3 years?  Do tell.  I’m all ears.

But, this year – this year!

I picked up the inclusion fight right where we left off last year.  I wanted her included in a class’ morning meeting time to interact with them everyday.  I pushed for them to come up with different times for her to be with other children as well.  She now attends music and recess with this class and others at different times during the week.  It is so much better than what it was when we got here.

After all of the struggle and excuses from administrators, finally, she has a chance to get to know other students.  For her to see them.  For them to see her.

And, darn it all, if that isn’t when a group of 5th graders broke my heart wide open.

Apparently, some of the children in the 5th grade class took an interest in how E communicates.  They watched her come in with her Step by Step button, and her personal story books (Pictello is the app.  Check it out!) on her Ipad.

They started thinking.

Their thinking led to a powerpoint called E and The Issue On How To Communicate.

I can say (with only a little bias) that THIS IS THE BEST POWERPOINT of ALL TIME.

The 5th graders made a plan to create a device to help E communicate.  The 5th graders made a presentation, people.  They sent it to her teacher.  She sent it to me.  I needed to wring out my laptop after reading it.

I am going to share some of this presentation with you because it is THE BEST.

THE ISSUE

“We have been meeting with E for a few weeks now, so we know she has cerebral palsy, CVI, and mild autism.  We all know she is happy, but wouldn’t it be nice for her to come home and to be able to say ‘I love you’ to her parents?  After reading the book, Out of My Mind, about a girl with CP, we were determined to help E.  We got together and came up with a device to help her communicate.  We’d like her to be the first student we help.  We know E has a special disorder called Cortical Visual Impairment that causes her brain not to be able to process what she sees.  So, she uses her hearing to tell the difference between various people.  Because of that, we focused on hearing and touch, rather than sight in the device. “

THE PLAN

“Don’t worry, we have a plan to make this work. (For once, I’m speechless.) We need to be able to teach E after we get to learn more about her, her abilities, and her struggles.  We want to design the device based on E’s strengths and weaknesses, so once we have gotten the total price, we will have a fundraiser to create this life changing device.  So, don’t worry about the cost we got it covered.” (Again, no words.) 

One section of the presentation is images of devices and materials they are going to create or buy to make a contraption my daughter can use to communicate. Then, they want to teach her how to use it.

Yesterday, I went to pick up E for an afternoon therapy session.  This 5th grade class happened to be lining up in the hall on the way to lunch.

A couple of the girls said, “Hi, E’s mom.”

I had the urge to hug the stuffing out of the whole group, but I didn’t want to scare them. So, I went with nonchalance.  “Hi guys, I read your PowerPoint.  It’s really impressive.”

A little girl with plastic Harry Potter glasses was passing by me.  She stopped and said matter-of-factly, “Yeah, we thought it would be nice if E could come home and say, ‘Hi, Mama.'”  

The simplicity of this statement took my breath away.  I needed to give some kind of response. Sobbing clearly wasn’t an option.  I clenched my jaw, tried to smile, and nodded.

She nodded politely and walked on to the cafeteria, swinging her lunchbox.

Whether or not, this device eventually works, the ideas behind it and the effort they have put in already have worked on me.

Some days people notice!

Some days I am floored by the grace and kindness that comes from unexpected places.

Some days I am reminded of the fact that children are my favorite people, period.

Their kind of help is the kind of help that helping’s all about.

Their open hearts and minds will be our saving grace.