Giving Tuesday

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 the idea of giving back. I will again support NOAH this #GivingTuesday by donating some money on behalf of the Campbell family. The National Organization for Albinism and Hypopigmentation (NOAH) has been instrumental in educating me and my family about Albinism. I will also continue to write about albinism in the hopes I can spread awareness one reader at a time.

The idea of giving back is simple and has a BIG impact, donate or volunteer and then tell others about how you are giving back. Here is a link to the Giving Tuesday website for those who are interested in Giving Back. They have provided a directory of organizations, events, charities and you can search by your location. Even though Tuesday is almost over for us do you really need an excuse or a specific day to donate? Without charities like NOAH people like myself would be less informed and feel less connected. Take the time, choose a cause close to your heart and give back a little.

 

Featured image – Nash on the right-hand side of the picture holding a badminton racket in his right hand. He is trying to get the bubbles floating in front of him as he runs around the garden.

 

Profound statements by little beings.

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 age-appropriate tests on your child to see where exactly they may be on the developmental scale. One of the questions that arose at this time was “Did Nash know and use 15 to 20 words in his speech?”.  At the time I could barely count 5 words that he knew but I wasn’t particularly worried about it until it was pointed out that he should probably know more.

I have no idea what I was worried about, fast forward 8 months and the kid never stops talking. What I love about the way he talks is it is really slow and quite thoughtful not at all like the way I talk. My words spill out of my mouth in a jumbled, hurried, excited mess most of the time. Not long ago Nash said two statements to me which I thought was pretty profound. The first statement was “I can’t see well from here”. Now, this statement truly blew my mind. We have never heard Nash vocalize anything about his vision. Everything we know about his vision is from the tests and observations done by his Ophthalmologist. The sad thing about this statement was Nash was wearing his glasses when he said it. So if he can’t see the tv screen clearly from 10 feet away with his negative 6 prescription glasses how bad is his eyesight?

The second statement Nash said to me on that day was “It’s not fair”. Kind of ironic really. All I can tell you, kid, is your right sometimes life isn’t fair. As someone said once, somewhere “When life gives you lemons, make lemonade”.

Or like Ron White says ” I believe that if life gives you lemons, you should make lemonade….and try to find somebody whose life has given them vodka, and have a party”.

Featured image – Black and white image of Nash staring closely with head down at a book he is holding, the image is courtesy of Masami Photography.

 

 

 

 

 

Alexa, the newest lady to join Malaville

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 for people with albinism”.

Mala stated in an article written by the Huffington Post “I hope that parents are able to teach their children the truth about albinism and maybe some of them can also learn new things about persons with albinism themselves,” she said. “Teaching children from an early age will help change the views of a new generation for the better; they will then treat people with albinism as equals.”

One of the biggest complaints I have heard from parents in albinism social groups is that there are no dolls out there that really represent their daughter or sons.  I would say that the proportions of the dolls are still similar to the unrealistic sizes of Barbie. However, I think this doll and all her dolls are a step in the right direction for a truer representation of real people.

Unfortunately, Alexa is not up on the website even though she is supposed to be for sale so I am not sure how one purchases her at this moment.

Featured image – my representation of Alexa doll because I generally try to not use photographs that are not my own (try not to laugh).

 

You fooled me, Harvey.

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 cannot stop reading the news, checking friends Facebook pages and messaging everyone I know. I am desperate to get back into the city but at the same time, I’m worried about what I will see. People keep posting on social media about this being a 1000 year flood, Houston you didn’t stand a chance!

On Thursday evening after doing some hurricane prep my husband text me suggesting we leave town. I didn’t want to go, I was really against the idea. I thought the hurricane was hyped up and the last time we had a big storm come it completely missed us and went up along the coast to Florida. I think I had become complacent, I also didn’t want to leave my house it is the place I feel safest. It had never flooded, my neighborhood “didn’t flood” we would be fine if we stayed. Turns out that would not have been the case. I don’t give enough credit to my husband his decision was spot on. Aaron if you are reading this we are forever grateful for your quick thinking. We peeled out of Houston at 6 am after running around like crazy throwing things in the car and made it up to family in Sherman before the hurricane really hit.

To all of my friends, I am glad you are safe but I am sorry for your losses. My family is here to help yours in any way we can. Houston has truly become my home away from home and the people my family away from family. My love goes out to all of you.

Featured image – neighbor in his canoe (photo credit goes to one of my amazing neighbors)

 

 

 

Changing pigment

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 assumed his hair would be a brilliant bright blonde all of his life. I was furiously rooting around in his hair the other day and came across several dark strands of hair.

A few weeks or possibly months ago another mum of a person with albinism asked the question on Facebook that I had been thinking: Can my child’s hair get darker? Many people responded and answered yes to the question. I wish I had saved the post due to the interesting responses it created. I even tried researching it more online and came up empty the only answer I got was this one from sharecare.com:  “Changes in skin, eye, and hair color depends on the type of albinism the person has, as well as on the individual. For example, some people with OCA 1 start making melanin in childhood or adolescence so their skin, eye, and hair color may change somewhat. Other people with OCA 1 do not start making melanin, and so there is no change in skin, eye, or hair pigmentation. Some types of albinism, such as X-linked, do not tend to affect skin tone as much as vision”.

I keep wondering: If his hair is developing more pigment are his eyes developing more pigment or do the eyes stay the same? If it doesn’t stay the same and indeed his eyes do get darker does this affect his vision? I suppose these are all questions to put forward to the Ophthalmologist although the problem with albinism is that even the “experts” aren’t 100% versed in understanding it. I may have to start my own little experiment and take a photograph of his hair and possibly eyes each day over the next several months and see where we end up hopefully, I can keep him still for long enough.

Featured image – Back of Nash’s blonde curls.

What is the idea behind IDEA?

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 I didn’t realise this law existed till Betsy DeVos displayed confusion and a great lack of knowledge about this federal law during her confirmation hearing for education secretary. I decided to find out more about this Federal Law, after all, it is incredibly important to us.

The Individuals with Disabilities Act (IDEA) came from the Education of Handicapped Children’s Act passed in 1975. Over time amendments to the law were passed. It is designed to ensure that children with disabilities be granted a free and appropriate public education (FAPE) in the least restrictive environment. This means that kids with disabilities join regular classrooms with their peers if they are so able.

IDEA ensures:

  • Children with a identified disability receive a special education and related services to address their individual needs.
  • Children with disabilities are prepared for employment and independent living.
  • Children with disabilities and their families are protected under the law.

Children who have the following disabilities, disorders, and impairments generally qualify although not every child with learning and attention issues will qualify for special education:

  • Learning disabilities
  • Autism
  • Hearing impairment
  • Visual impairment
  • Speech or language impairment
  • Developmental delays or cognitive challenges
  • Attention deficit hyperactivity disorder (ADHD)
  • Physical disabilities
  • Traumatic brain injury

Thanks to Part C of IDEA Nash was able to get services from birth until he turns 3 years of age through Early Childhood Intervention. My husband asked me the other day if I found these services useful. I would say 100% yes. Being able to talk to someone outside the friendship and family circle who can provide unbiased feedback on Nash’s development and who has many resources at their fingertips has been instrumental for me. If I have fears I can talk about those, if I have questions about organisations his VI teacher can answer them and most important any questions about preschool and elementary can be answered. We have been very lucky with our services and the information they have provided, some are not so lucky. In the last year, there was some press about Texas and whether it had been denying services to children with disabilities based on a cap that  the Texas Education Service Agency had imposed. NPR did a piece called Texas May Be Denying Tens Of Thousands Of Children Special Education back in 2016 that talked about this issue. It is my understanding that the Texas Education Service Agency has eliminated the cap as of March of this year. Luckily Nash is not in public education yet so we have not experienced any of this, I cannot imagine how frustrating this has been for parents and children across Texas.

 

 

 

 

International Albinism Awareness day

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 am still blown away by the lack of knowledge many doctors have about this. I read stories of people in the UK and the USA whose children were not diagnosed for years even after seeing various doctors or they have a limited knowledge of the medical needs of a person with albinism.

Albinofoundation.org states “The overall aim of the celebration is to create the much needed awareness that members of the public and governments at all levels need, on the challenges faced by persons with albinism and ensure the total eradication of all forms of discrimination, dehumanization, and stigmatization associated with the condition, as well as provide the necessary tools that will improve their wellbeing”.

One of the ways I like to spread awareness is through this blog, others hold events with families and friends, perhaps one day my sons will be able to help spread awareness through their schools. I count myself lucky every day to live in a city with some of the best doctors and with some wonderful organisations that have been instrumental in assisting me in getting Nash the best support, others are not so lucky.