The other day a friend asked me, "What does ARD stand for?" After just coming out of a 2 hour ARD meeting you think I would know but in fact, I had no idea. And yes, I am the kind of person that goes out into the world without having all the details even when … Continue reading ARD
The above campaign slogan was used in the United Kingdom for the phone company Orange. It won't mean a thing if you are reading this and you are from the US. I felt like this slogan was blasted on the TV/radio for years and after not hearing it in a long time as my family … Continue reading “The Future’s Bright the Futures Orange.”
Today is almost over here in Houston Texas and it is certainly over for many of our friends and family on the other side of the world. If you didn't know today is Giving Tuesday, a day of giving moved by the power of social media and collaboration. It is a day to celebrate and encourage … Continue reading Giving Tuesday
Looking back seven or eight months ago I was concerned Nash was having issues with his speech. This was not some insecurity born from my own crazed anxieties but from an Early Childhood Intervention (ECI) evaluation, we had just completed. During these evaluations a speech therapist must always be present, she/he will carry out multiple … Continue reading Profound statements by little beings.
I emailed a lady called Mala Bryan a while back asking if she was indeed going to make a doll that resembled a person with albinism (this was back in March) and she said she had an 18-inch doll in the works. Well, she did it, she created Alexa. Alexa was designed to "help create awareness … Continue reading Alexa, the newest lady to join Malaville
Today, I woke up and finally cracked seeing all these people I know and care about being left in such dire circumstances. As painful as it is to watch it is even harder for them to go through. Last week I was thinking about starting work and getting Nash his new glasses. This week I … Continue reading You fooled me, Harvey.
A curious thing started happening, Nash's hair has started changing colour. I say curious because I didn't think this could happen to a person with albinism. The featured image shows the darker areas of Nash's hair at the roots. We knew the type of albinism he has means he has some pigment but I just … Continue reading Changing pigment
What is the idea behind IDEA? For those of you living elsewhere in the world this Federal Law won't concern you much but for those of us living in America who have kids with disabilities, it is a pretty important law. I have to admit that even though I have a kid with a disability … Continue reading What is the idea behind IDEA?
Today is International Albinism Awareness Day. In 2014 the General Assembly adopted a resolution proclaiming, with effect from 2015 that June 13th be known as International Albinism Awareness Day. People with albinism all over the world face discrimination particularly those living in Africa. Albinism also continues to be misunderstood socially and medically even here in America. I … Continue reading International Albinism Awareness day
Alright alright, Nash didn't actually hop on the school bus but he did start one day a week last month at his brother's preschool. As I mentioned in a previous post I was overwhelmed with a range of emotions when I dropped him off that first day. I hadn't expected to be so sad but … Continue reading No Big Deal.