Saturday, June 15, 2013

Beyond The Label | In The Workplace Series


As we sat watching TV this morning, Liam started naming the animals on his Saturday morning cartoon show. Brian and I began discussing how well he truly does see, and the conversation shifted to the people with albinism that we met at the NOAH conference last year and those on Facebook since then.
One thing Brian had never admitted to me until now was this:
"When I met the two lawyers who were in their early twenties, the teacher, the director with normal successful careers....that's when I finally knew: he is going to do just fine. That was when I could finally...relax a little."
He explained that for most dads it's more about the future, how it will affect their dreams, goals, careers, and success in "our world". Our world doesn't always come "disabled friendly" or "blind friendly". It's harsh, but it's true. Meeting these individuals showed Brian that his son could do almost anything he wanted, his vision not holding him back from a successful career. Dads are natural providers, and they want their sons to be independent providers as well one day. Meetings so many business professionals helped him to relax and realize that people with albinism are just like the rest of us- they just may have to work a little harder at it.
The conversation got me thinking- newly diagnosed families need to hear these success stories.
Dads NEED to hear these success stories.
Now, we know that success is not measured by your job. Many disabilities keep people from working yet they have full and happy, successful lives. But as the parent of a special needs child, knowing that your visually impaired kid has a shot at holding a regular job one day helps with the coping when it comes to the parenting part.
So we wanted to do a few interview posts of some of these business professionals during the next several weeks. We hope to show the new families of young children with albinism that when it comes to their child's education and adult career life, they can (like Brian) just "relax a little".
Like always, if you have any particular questions you want answered email them to me and we will see what we can do. I have a few individuals lined up for the next few weeks, but volunteers are welcome! We will call it the" Beyond The Label | In The Workplace" Series, and I cannot wait to begin!

Friday, June 14, 2013

To See The World In Color-Colorblind

Since Liam was little, we have wondered if he would also be colorblind. We had heard early on that it was a possibility but then again we were also told he was almost completely blind too. So from the time he turned 1 year old, we have been pushing colors at him and help with this from his vision therapists. They assured us as he got older (closer to 2 years old) we would know more- basicly the "hurry up and wait" game again.
We started with practicing "grouping" putting like color toys in piles all across our living room floor and challanging him to match another toy with the correct color pile. We did colored paints, colored shape sorters, and basicly anything else we could get our hands on. After all, mom is a painter who lives in a colortastic world ever day, making her more determined than most on the subject.
We were having no luck and since Liam had finally turned 2 years old in May, we were seeking to have him colorblind tested sometime this summer. ( *By testing I mean using the little green/red cards to see if he could see the shapes inside the hidden pictures. Since we now know our shapes, we thought this would finally give us a little more knowledge on where he stands with colors and you can actually purchase these cards online too if need be. Luckily, our therapist was planning to bring the cards and other test objects with her so we did not buy any of our own.)
The week before we planned on addressing this in his therapy session the below video took place. We were cooking in the kitchen when Liam drug in one of his tracer toys and began to name colors.
He pointed to a green bead and said, "Momma, esta (it's) buuu (blue)!"
My response was, "No Liam, that's not blue it's..." 
"Geeennn!!" he shouted.
He was right. It was green, and I was shocked. Probably just a fluke I decided, so I sat down to test him. The video is what happened next with no help what so ever! It started with three colors then by the end of the night he knew all five bead colors on his tracer toy.
We were shocked.
Testing cancelled. He obviously had decided he would name colors when he felt ready and now was finally that time.
So if your like me and begin to panic when your already struggling visually impaired child calls everything purple, have hope. It may be too soon, or it may actually be colorblindness. Either way, let the child find his own way about it, and just know that no matter the outcome they will manage just fine.