Cortical Vision Impairment and me

I had an amazing opportunity this past week.  I got to spend time at a Cortical Vision Impairment(CVI) convention.  It was three days of action packed learning.  I took notes, got a book, and tried not to be jealous that I didn't win glow eggs or Slinky's.  More on that later.

But I really wanted to take some time and share what I learned.  These things don't just have to be for CVI.  You may find use for them with your own SN kiddos.

But first before I start a disclaimer.  I am not a doctor.  I cannot diagnose or treat your kids.  This is advice.  You should always take your child to a doctor first.  Of which I am not one:).  I will however make house calls with home made baked goods (I am from the south after all), a chick flick (Crying is therapeutic), a beverage of your choice, and a shoulder to cry on and ears to listen.

So that being said here are some of the top things I took away from the conference.  The first was that you should get some books.  I would start with Little Bear Sees by Aubri Tallent, Andrei Tallent, and Fredy Bush.  It is sort of an ABC primer of CVI.  You can get it on an e-reader and I had it read in two days.  It gives ideas, tips, and hope.  After you have read that and feel like you have digested the info get Christine Roamn-Lantzy's book Cortical Visual Impairment:  An Approach to Assessment and Intervention.  This is the Harvard version of CVI.  I have had the book for a week and I am on Chapter 2.  Of course my son is out of school and every time I pick it up he has a splinter, tick, or is hanging from my curtains.  So I have a feeling I will be reading this until her new updated book comes out.  Yes she is updating her book.  No, I'm not sure when.  But I really feel that you need to read this one.  The book has forms and most important (to me) teaches you the scale.

Yes, there is a scale.  CVI kids are either phase 1,2, or 3.  The book teaches you how to scale your child and what activities are most important to do within each phase.  Children with CVI CAN IMPROVE!!!  But it is not magic.  It is work.  Hard work.  As a parent you need to learn to use the scale so you can help your child.  Plus, if you have others scaling your child they may be way off.  The good news is that everyone at the conference can scale pretty well so if any one of them came to see my daughter I would feel good about letting them scale her.

Now each phase has different things that you can do.  Phase one is the most basic phase and the child needs a controlled environment.  You want to train those eyes and brain to work.  Let me show you some of what I do with Cary.  This is the part that other SN families may like too because I feel that you can do some of this with other types of disabilities.

The first is a light box.  You can get one off of amazon, make them with ideas from pinterest, and if you have a cool vision person they can hook you up.  We place basic shapes in red, yellow, and blue.  Why?  Because those are colors Cary can see and she is a light gazer.  We spend time at the light box pretty much daily.

We also have a basket of objects Cary can see.  I keep it handy.  If your child sees red well, fill it up with pinwheels, balloons, Slinky's, red mardi gras beads, you get the idea.  Here is our box.  Surprise, guess what color Cary likes?

Inside the box we have all sorts of fun objects.  It is a little empty now (did I mention my son is at home;) ).  But you get the idea.  

One thing that kind of crushed me was books.  I am a teacher.  I say read read read.  But CVI stage 1 kids can't see pictures.  There are some exceptions, but pictures and faces are meaningless to them.  So the books I thought Cary loved are books she cannot see.  Does that mean we stop reading books?  Oh, heck no!  I still read them.  What Cary loves is the sound of my voice.  But I wanted more.  I remembered what I had learned that simple shiny or textured shapes would catch their eye.  So I made a book with chipboard and shiny paper.

Tah-dah!  Now I am not expecting any awards for this one, but it is simple, quick, and Cary bats at it every time I bring it out.  I also have re purposed furniture around my house.  I have a small home and space is a commodity.  So we have a main room.  Don't be afraid to be creative.  I took some old Cd's and taped them to a chest.  Shine a light on them and place one baby in front of it and you have hours of fun.  You can touch Cd's, kick them with your foot, and try to pull them off.

You also can get some really great double takes from visitors:).  Another favorite is Cary's "vision room".  I took a black tri-fold board that you can get at a craft store, stuck some tap lights and a black towel under my desk and viola!

Cary has a darkened sensory room.  It is really important for CVI kids to have a chance to focus on objects in a quiet area.  Dark with a few lights that highlight the activity you want them to focus on.

Another important thing is mirrors.  I have one I drag around.  The light and reflection attract Cary and she enjoys spending time in front of it.  Have a portable mirror.  Or buy one for every room.

Another great thing for CVI kids is an Ipad.  If you can get your hands on one of them and prop it up there are really great apps out there.  I got the list dejour from the convention.  Are you ready for some great apps? Some are geared for different generations but here is the list:
Baby Finger
Fluidity
I Glow Stick Pro
Switch
Bright Start
Baby Patterns
Infant Visual Stimulation
Big Bang Pictures
Bubbles
Rim Shot
Peek a Bouncer
Musical Hands
Guitar and Xylophone apps
Music Sparkles
Tappy Tunes
Rattle Drum
Bert's Bag
Talking Larry
Tap and See Zoo

Keep in mind that depending on your stage, age, and latency(how long it takes your child to look at an object) that not every app will be for your child.

If an Ipad isn't an option you could also use a lava lamp, or get a red beta fish, place in a clear bowl, and put it in front of a black area.  Another thing.  Wear black.  Get used to looking like the living dead.  You want the child to focus on the object you are presenting to them.  So if you wear a dark shirt or outfit the child will focus on the nice shiny object you are presenting.  Oh and don't talk a lot.  Silent presentation is the key.

So are you feeling overwhelmed yet?  I hope not.  These are just some things I took away.  Give your child an opportunity to work with their vision in your everyday routine.  Have fun with it.  If you are having fun and relaxed your child will be to.  It doesn't have to be perfect.  Children are very forgiving.

There is one more thing I want to share with you.  It is probably the most important thing.  All the people of the convention had fancy titles.  Like PT, OT, AT, Phd's and all that fancy stuff.  They were very proud of them.  But I trumped them all.  I have the most important title.  I am a MOM.  These people will come to your home tell you what to do, when to do it, who should do it, but at the end of the day they go home.  I live with my child.  I know what makes her laugh, cry, and the beat of her heart.  I am my child's advocate.  You are the most powerful person in YOUR child's life.   You are their voice, their advocate.  If you don't advocate in your child's best interest they can run you over.  Don't let them.  Stand up, speak up.  We need to advocate for our children until they are able to do so for themselves.

One more thing.  Always have hope. CVI is a new and changing field.  There are new breakthroughs every day.  Your child is a miracle and can live a happy life.  It may not have been the life you had planned for them, but are you living the life that your parent's planned for you?  Live your days in hope and don't ever give up.