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.

 

No Big Deal.

Love is

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 maybe it was to be expected since he is the youngest. I am not the most sentimental person as you can probably tell.

My initial feelings about leaving him at school were focused on how he would fit in. Would the other kids notice his nystagmus or are they too young? Would they pull on his glasses (you would not believe how often this happens)? How will he deal with his photophobia?  What if he flings his glasses off and the lens pops out? What if he refuses to wear his glasses? Did I put enough sunscreen on him? One time I put him in a long sleeve shirt and thought it would be safe to forgo the sunscreen on his arms, big mistake. Although these are valid concerns I was spending my time worrying about a lot of things that were generally out of my control.

As Bob Marley tells us “Don’t worry, about a thing. Every little thing is gonna be alright.” This song has been regularly requested by my eldest son in the car, I think he is trying to chill me the #$@&%*! out! I admit it wasn’t really Bob Marley who got me to chill out it was the little kids at Blossom Heights preschool although wise words Bob. One day I walk into school on a non-Nash school day and these little girls from Nash’s class start shouting “Look there’s Nash, there he is, Nash, Nash”. It was just about the sweetest thing I had seen they were so excited to see him. It was in that moment that I thought what am I worrying about this kid has got it and is charming the socks off of his classmates all the other stuff isn’t worth worrying about. If his glasses come off, no big deal, if I haven’t applied 3 layers of sunscreen, no big deal, if he takes his hat off, NO BIG DEAL.

(Featured image – black and white cartoon courtesy of www.LoveIsComix.com of a mother seeing her child on to the school bus).

 

 

 

 

 

 

Kid’s Day

My eldest son Jack asked me yesterday “When is kids day?” I said, “Kids day? It is kids day every day”. He laughed which made me think that he knew this already. As you know or may not know it was American Mother’s Day yesterday and I had been playing the it’s Mother’s Day today so mummy gets her own way card. I think he was fed up and wondered when he would get his own day. As much as I found his question hysterical, kids day as if there would be such a day, I did start thinking about how grateful I am for these little beings in my life. With the good there is the bad let’s not pretend there isn’t. Parenthood is hard and this hardship is kept a big secret by all the other parents, grandparents, and great-grandparents because nobody would ever procreate if they really knew what it takes to be a parent. But the good is so good, being a parent is beautiful, magical, breathtaking, it is all the things you never thought you needed in life but now have. I am not about to start advocating for “kids day” however, I will take a pause every now and then and think about how grateful I am to those little monkeys for giving me the gift of being their mother.

Featured image – Black and white image of Nash on the left and Jack on the right jumping in a giant puddle.

 

Skin Cancer Awareness Month

For those of you who don’t know May is Skin Cancer Awareness Month. In this family, we know all too well the risks associated with too much sun. One of the first topics I decided to write about when I started this blog was sunscreens in a blog post of the same name. Applying sunscreen on a daily basis has become a huge part of my life, I am forever applying it to myself, Nash or my eldest son.

Skincancer.org states “With 5.4 million cases in more than 3.3 million people diagnosed annually, skin cancer is the most common form of cancer in the United States. Fortunately, skin cancer is also one of the most preventable forms of cancer and highly treatable when detected early”. One of the concerns with having a kid with albinism is their lack of pigment, this is caused by a lack of Melanin in the skin. Melanin is described as the pigment that gives human skin, hair, and eyes their color. Medicinenet.com states “Melanin is produced by cells called melanocytes. It provides some protection against skin damage from the sun, and the melanocytes increase their production of melanin in response to sun exposure.”

In Nash’s case, he naturally has little to no protection and both his skin and eyes are vulnerable to the sun’s damaging rays. Nash is required to visit a dermatologist regularly to have his skin checked, although he is unlikely to develop skin cancer at this young age he is much more likely to develop it than say you or me later in life. Skincancer.org recommends that everyone see their doctor regularly to have their skin checked. They even have a page dedicated to early detection and how to do an exam yourself.  I say prevention is better than treatment, so layer on that sunscreen, get on those sunglasses and don’t forget the hat.

 

 

“We Should All Be Feminists”

Don’t let the title scare you. I recently downloaded this short essay based on a TEDx talk of the same name by Chimamanda Ngozi Adichie. My husband and I were taking a little trip minus the monsters and I needed something to read. It was a shorter read than I was expecting but I found her views on Feminism enlightening.  I believe personally if we want to change the mindset of the people we need to start with the kids and how we as adults impart our prejudices on them. This doesn’t just include feminism it includes race, culture, religion, mental health, and disability.

Chimamanda says ” Today, we live in a vastly different world. The person more qualified to lead is not the physically stronger person. It is the more intelligent, the more knowledgeable, the more creative, more innovative. And there are no hormones for those attributes. A man is as likely as a woman to be intelligent, innovative, creative. We have evolved. But our ideas of gender have not evolved very much.”

Chimamanda states that we do a great disservice to boys: ” We stifle the humanity of boys, we define masculinity in a very narrow way. Masculinity is a hard, small cage, and we put boys inside this cage. We teach boys to be afraid of fear, of weakness, of vulnerability. We teach them to mask their true selves.” I often hear parents telling their young boys “don’t cry be a big boy, big boys don’t cry.” Sometimes I to have found myself saying this, however, I make a habit to avoid this kind of talk if I can. It usually comes out when I am at my wit’s end and cannot think of anything sensible to say. I alway feel incredibly bad after knowing that my four-year-old is just a little human being who shouldn’t be ashamed of his emotions.  When I am more rationale I try to have an open dialogue and not shut down his emotions the minute he lets them out.

An example Chimamanda uses to show how boys have to prove their masculinity is a boy having to always pay the bill even if he earns or receives the same pocket money as a girl. She says “What if both boys and girls were raised not to link masculinity and money? What if their attitude was not “the boys have to pay,” but rather, “whoever has more should pay……By far the worst thing we do to males – by making them feel they have to be hard – is that we leave them with very fragile egos. The harder a man feels compelled to be, the weaker his ego is. And then we do a much greater disservice to girls because we raise them to cater to the fragile egos of males”.

Chimamanda says “What if, in raising children, we focus on ability instead of gender? What if we focus on interest instead of gender? If you have girls read the book, if you have boys read the book and if you don’t just read the book anyway or alternatively find the TEDx talk. In case you wondered nobody is paying me to write this I was just really blown away by her thoughts. Next stop Understanding Power by Noam Chomsky – I promise not to write about this one

 

School days are upon us.

I feel like I am having empty nest syndrome except nobody has actually left the nest yet. I wonder if there is a word for a stay-at-home parent who suddenly finds themselves minus a child to look after. I made the decision to put Nash in school earlier than intended as a spot opened up in our pre-school of choice. I had already decided that he would go 3 days in the summer with his brother and then full time in September so the notion of him starting school wasn’t something new. However, I wasn’t ready for how gut-wrenchingly terrible I would feel. When my eldest started preschool it was a last minute decision as my husband was working and at school. We never saw him and that in turn meant I was working my butt off. I needed the break that pre-school would provide, I was desperate for it, I was also pregnant and feeling exhausted. When I dropped him off that first day, his wailing through the walls was a little hard to take but really I almost did a little dance out the door, I know I am THE best mother.

When I dropped Nash off at school my immediate reaction was to cry the really ugly kind when you cannot talk. I felt horrible like I was betraying him in some way. I was, I was ditching him so I could spend five and a half hours with my eldest son. The crying was so bad that my eldest asked me what was on my cheeks, I told him tears, he said “tears of happiness”. Kids have a way of making you laugh when you least expect it.

That first week Nash attended preschool I received an email from the Nystagmus Network it included a personal story written by a child with Nystagmus that was published in FOCUS Magazine in the 1990’s. It didn’t do anything to ease my fears about what school life will entail for him but it was incredibly interesting to read about Nystagmus from the perspective of the individual dealing with this type of condition. Luckily for me, Nash is a long way off from the typical classroom environment that the child writes about.

Here is the link to the story and for anybody who is reading this as the parent of a child with albinism or nystagmus here is the resources link where you can find a booklet written by the Nystagmus Network. The booklet especially made for teachers and their school’s provides information about nystagmus and what assistance a child with this condition requires. It was written for the UK school system but I find it has some really valuable content.

 

Nash at school

Summer is nearing

Well hello there world! I think I have had writers block or maybe just children block, whereby my children block me from doing anything that doesn’t involve them in some way.  It feels like forever since I sat down to even open up my blog. I have to say we have been having fun though. We just returned from seeing some fabulous family in the North of Texas, the weather was perfect. It reminded me that it is that time of the year in Houston when the temperature starts creeping up and before I know it my phone says it is ninety-five degrees Fahrenheit outside. In the summer months, by which I mean 9 months of the year, I am in a constant state of anguish. It is easy to see why crime rates go up during a heat wave, there is something about the blazing hot temperatures that just makes a person irritable. Another mother told me that once I accept the fact that I am going to be sweaty all summer I’ll feel much better.

This time of year for our family means hats, sunglasses and lot and lots of sunscreen. The hat is an all year staple, we are working on prescription sunglasses and well the sunscreen is coming out my ears. I have it in my handbag, at the front door, the back door, and in our swim bag. I have noticed that with Nash there just has to be a time limit on how long he should stay outside. Eventually, no matter how much sunscreen he wears he will turn pink. I can’t be responsible for contributing to skin cancer later in life and since we already blessed him with some really amazing genes I am going to have to be careful.

Here are a few facts you should know about sunscreen:

  • Mineral is best (in my opinion) plus who want to put nasty chemicals on your skin from the chemical sunscreens. Also chemical sunscreens have to be applied at least 20 minutes before heading outside so that it is properly absorbed into the skin.
  • Titanium Dioxide and Zinc Oxide are the only physical UV filters approved by the FDA for sun protection.
  • Sunscreens have a shelf life of about 3 years. I hate waste but if it is that old throw it out as it won’t protect you half as well as you think.
  • Sunscreen is unstable at high temperatures “Ideally sunscreens should be kept at temperatures no hotter than 77 °F (25°C)” Jeffrey Benabio, MD, Dermblog. If you are at the beach or pool and have a cooler with you put it in with the drinks.
  • More research needs to be completed as to how the ingredients in sunscreens are absorbed into the body and whether this poses a threat to us in the long term.
  • The consensus though is never going without.
  • Lastly, sunscreen does not protect your eyes, if you have a pair of sunglasses wear them and if you don’t buy them.

Here is the  2016 EWG’s guide to sunscreen they have yet to release the 2017 list. Babyganics Pure Mineral Sunscreen Stick SPF 50+ has to be my favorite. It doesn’t rate super high for UVA protection but it has an overall high rating, it is easy to carry around and you can really see where you have put it on.

Featured image – Nash looking towards the paddling pool with his back to the camera he is holding on to my left had with his left hand.

 

 

“The days are long but the years are short”

Someone, I can’t remember who, recently said this to me and boy did it strike a chord. Nash turned two today and I can’t for the life of me think where those few years have gone. Being a stay-at-home parent the days can seem so long: the early mornings, the dog walks, the tantrums, the refusals of food I could go on. That is not to say that we don’t have a lot of fun but 12 solids hours with little ones is tough. So, if the days drag how do the years fly? I guess that is why they say enjoy every day.

Happy birthday to the sweetest boy I know. I always wished for a blonde-haired blue-eyed boy and I definitely got that.

Featured image: Nash blowing out his birthday candles