The IPad

Does anyone have any opinions on the usefulness of an ipad to a child with CVI?  I have been hearing of a lot of positive results, but no real specifics as to how it is being used and what apps are useful..  Thanks!

The IEP Meeting

So this week was my son's IEP (Individual Education Program) meeting at school. He turns 3 in a few days, and this was the last required meeting before his big first day of school.  Let me just start off by saying what a mixed bag of emotions this meeting can be.

One of the first things I was told was that the purpose of the meeting was to determine wether my son fit the criteria for a disabled child(determined in a percentage of developmental delay measurements~ I'll explain that in my next post).   The woman was very kind and meant well when she said "Obviously, your son meets the criteria of a special needs child to enter our special needs Pre-K. So this part of the meeting is just a formality." While it was meant to reassure me that my son is accepted, you can imagine those words dropped an emotional rainstorm over my head.

Dylan is considered globally delayed.  He is delayed in every area except for cognitive/expression.  I think this is one of the reasons the school agreed to accept him into their program. (It is the first time in over 20 years they have accepted a child with Dylan's disabilities.  Normally they send them out to a larger, neighboring school district with a large special ed program).  Cognitively, Dylan is smart as a whip, has a great memory, and a huge personality.  There is a good chance that over the next 2 years in Pre-K, that he will catch up enough to be accepted into their Kindergarten program. I try not to get ahead of myself, but this is our goal for Dylan.  We want him to stay in the community and be able to develop and thrive in an "average" classroom.

The school has been going out of their way to make sure that this will be a positive and rewarding experience for Dylan.  I have been touched and impressed by their thoughtfulness and kindness.  Dylan is so excited to go to school, I just hope he still feels the same way when he realizes he has to go there for 3 hours a day, 5 days a week!

In my next post, I will be discussing some of the finer points of an IEP and what I learned.  Specifically, what I have learned are the legal obligations etc. of the school in meeting a child's needs, developmental delay criteria,  etc.

My Life In Holland

When my son (who has has CP and CVI) was about a year old, I brought him into our local Verizon store to get our cable box replaced.  At the time, Dylan was still having a very difficult time dealing with new places.  He would often curl up in on himself so he could close out the outside world he found so overwhelming.  We called it "doing the armadillo".

The person who waited on me smiled at both myself & Dylan in a kind & knowing way.  We quickly began talking about our children (which is unusual for me as I am a very private person) and I learned that she had a special needs child with a rare & devastating condition.  I found myself telling her not only all about Dylan, but also how I was feeling.  I had friends with children the same age as my son & I expressed the difficulty I was having relating to them and the lives they were living with their "average" children.  I told her I felt like I was living on a completely different planet than my friends & their children.  She smiled & told me "No, honey, you are just living in Holland."  She told me to hang on a second so she could explain.  She quickly printed out a sheet of paper for me & this is what was it said:

WELCOME TO HOLLAND

BY

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
                       ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I am still so grateful to that incredibly kind woman who recognized a lost & confused newcomer to Holland & welcomed her to a beautiful world she no longer felt alone in.

My Own Little Cookie Monster :)

My son loves his chocolate chip cookies.  Every time I see him smile, I can't help but smile myself!  I love the fact that he does so well with holding the cookie & eating it on his own- he has come a long way :)

A child's favorite food is a fantastic motivator for working on fine motor skills.  Small crackers, cheerios, etc placed on a table in front of the child is a perfect activity, important developmental achievement, as well as a practical life skill for little ones.

My New Double Umbrella Stroller

I just got a chance to try out the new double umbrella stroller that I got for my nearly three year old son (who has CP and CVI) and my nearly eight month old daughter.  They both loved it!  It was difficult to find one as my son is very tall for his age, cannot sit unsupported (or walk), and is very fearful of losing his balance and falling due to his CVI.  I was so pleased with the double stroller, I wrote up a complete review of it here:

Review Of The Jeep Double Umbrella Stroller

One Of My Favorite Vision Therapy Toys

This is one of my favorite vision therapy toys for a baby.  It works well in the dark or low lighting.  The light changing is slow and the colors are vibrant without being overwhelming.  This is perfect as many CVI babies and toddlers have light sensitivity and aversion.  While they should not  be left with this toy unattended, this is a soft material and easily held in two little hands.  The lights change slowly and are soft.  When my son was a baby, he was slow to go to sleep.  I found this a perfect toy to sit with him in bed with while he played with it for a few minutes.  Remember, a few minutes here and there go a long way in potentially improving and maximizing your child's visual potential.  My son's eyes would light up when he saw this toy.  It is also a good idea to watch closely how your infant or toddler looks at this toy.  Notice if they tend to always hold it up to one eye, or in one particular area of their visual field.  This can be a tremendous help in giving you clues as to where in the visual field your child can see best.

I took a video of one of our eggs.  I will have to retake it soon as the quality is not the best and a TV was on in the room and the time of my taking the video.  However, it should give you a pretty good idea as to the look and feel of the toy.

Video of an OGGZ in Action

Do You Have Something To Share??

If so, please contact me!  I would love to post any appropriate  articles, videos, or stories you would like to share. Thank you!