Sunscreens

When I was living in Scotland applying sunscreen was at the bottom of my to do list even on rare hot days. Pregnant and breastfeeding women are encouraged to take Vitamin D supplements due to the lack of sunlight. Apparently Scots only get enough sunlight of the right wavelength for their bodies to make Vitamin D during roughly half the year. Life with a child with Albinism would perhaps be a lot easier there than here, with regards to sun exposure, but then maybe all that grayness would be harsh on the eyes. The grass is always greener, right?

In Houston sunscreen has become an absolute must, the sun shines almost every day, it is hot for 6 months of the year (at least) and the sun feels like it is boring a hole in your body during those months. I wear sunscreen everyday during the summer and so does my oldest son but since we are both olive-skinned and never burn if we forget it when we are heading outside for a little bit I generally don’t worry. Nash on the other hand is a different story, I have to grease up his whole body and his head since he loves to throw his hat around. Skin cancers are a major risk associated with albinism. Until I had Nash I have to say I didn’t think much about what sunscreen I should buy, I am pretty slap dash about most things in life and don’t spend a huge amount of time on research, I leave that up to my husband.  But since I have a child who has albinism and who also suffered from eczema at birth I decided to carry out some research to find out what all the terminology means and what I should be looking for.  I know, I know he is already 14 months but it is never too late to learn.

So which sunscreens should we really be using and why? First I wanted to look at the difference between Mineral and Chemical Sunscreens:

  • Mineral or Physical sunscreens also known as sunblock, contain mineral ingredients such as zinc oxide or titanium dioxide which are naturally broad spectrum (meaning they protect against both UVA or Ultraviolet A, think aging, and UVB or Ultra Violet B, think burning.
  • This type of sunscreen works by sitting on the skin and deflecting the suns rays and they work as soon as you put them on.
  • Chemical sunscreens are made up of multiple ingredients that need to be combined to get broad spectrum and they also take 20 minutes to fully sink in.
  • Many chemical sunscreens in the US use a chemical called oxybenzone.
  • EWG recommends that consumers avoid this chemical because it can penetrate the skin, cause allergic skin reactions and may disrupt hormones

Now that we know the difference between the two sunscreens how often should we apply our chosen sunscreen?

  • Mineral sunscreens can be applied right before heading out.
  • Chemical sunscreens need at least 20 minutes.
  • The recommendation is to apply all sunscreens 30 minutes before sun exposure to allow the ingredients to fully bind to the skin.
  • Reapplication of sunscreen is just as important as putting it on in the first place, so it is recommended that the same amount be reapplied every two hours.

What is the difference between the SPF’s?

  • SPF 15 product blocks about 94% of UVB rays
  • SPF 30 product blocks 97% of UVB rays
  • SPF 45 product blocks about 98% of rays.
  • Sunscreens with higher SPF ratings block slightly more UVB rays, but none offers 100% protection.

A few other tips I picked up were to avoid sunscreens with vitamin A, no insect repellent (oops, we do have one of those but I don’t really use it for sun protection), don’t spray (apparently it sprays the air with tiny particles that may not be safe to breath, oops again) and last but not least men are the worst offenders of failing to protect themselves against sunscreen. I can definitely confirm where my husband is concerned that he has to be prompted to wear it. There was a snorkeling incident with no sunscreen you can imagine how that went.

I am not going to recommend any sunscreens since I am no expert and I am not trying to sell you anything. However if you’re curious on finding the better more highly rated sunscreens here is a link to the EWG site:

EWG’s 2016 Guide to Sunscreens

You can check out their guide to the best sunscreens  and search for your current sunscreen to see if it is full of any nasty chemicals.  Good luck!

 

The Reality of Visual Impairment

I recently had the pleasure of seeing my cousin who was on a business trip in Houston. It was a real treat to catch up. Since most of my family live in Europe it is not everyday I get to spend time with them. During our visit he got to meet Nash for the first time. He brought up Nash’s vision and indicated he thought his vision looked good as he knew it was a concern of ours. He is not the only one to make this comment – people, strangers and friends have said the same thing. I am not saying it is a bad thing but how can you tell how good someone’s vision is just by looking at them? I really have no idea the true extent of Nash’s vision. Just the other day my little wild man came crawling out at full speed from the bathroom whilst I was quietly doing some ironing (yes I know I lead a thrilling life). He stopped, looked up and stared. He made a grunting noise (which he often does when he can’t find you) and when I responded he smiled my way and proceeded to crawl towards me. Now I was a good 10 feet away and the behavior he displayed showed me that although he could maybe see something he wasn’t entirely sure it was me. All these little interactions got me thinking about what a person with Albinism experiences visually.

I mentioned previously the characteristics of Albinism and how it affects vision. This time, I wanted to get it from the horse’s mouth, so to speak, so I asked if anyone in an Albinism group I am part of would like to share their experiences. If I could ask Nash I would but the only word he repeats over and over again is “cracker” in his best pirate voice. I think he only applies it to food but it is hard to tell.

Here is some of the feedback I got from the Albinism group:

“My vision is 20/400 uncorrected and 20/200 best corrected. At my corrected vision, I see at 20 feet what perfect vision people see two football fields away. It can also be described as the difference between copying off a picture using the weakest print possible compared to wanting a perfect pic which shows the blurriness vs. no blurry, I’ve yet to come up with a good example for my astigmatism (sp) and I have excellent peripheral (sp) vision and color vision.”

“If I can get things close enough I can usually see them. Imagine a picture of a street sign that is too far away to read. That’s how my vision seems; there isn’t enough detail. If I could get close enough to the sign I could read it. That’s why magnification works better for us. And glare scatters a lot of light, so anything that takes away glare like sunglasses or window tint helps make things more clear. I can see things but I can’t see details unless I am close. And any busy image makes it difficult for me to pick out details for example, a black and white cat in partial shade may blend in with the patches of sunlight and shade. That’s just a small glimpse into my personal experience”

“Your child can see well enough to fool people into thinking they don’t have a vision deficit.”

“My vision is 20/300 in both eyes. I have an astigmatism, and photophobia. I use a monocular, 5x magnifying glass, and a cane (yes a cane). It’s a personal and safety reason.

Just like those without a visual impairment, those with one grow up learning what things are. For me, I have to burst a persons personal bubble to see what they look like comfortably. It’s hard to describe what people look like (and I draw lol). An example I can give you is, say you’re looking at a tree 200 ft away. You know (probably) that it’s a tree, but you can’t see any defining traits. You know what it is because you’ve experienced life.

For blackboards, I hated them. Before I received all of my assistive technology, I would sit on my knees in front of a blackboard, moving every so often to read the next word (yay photophobia!). After I got a monocular, I could sit in the front row (like normal). I’d hold it up to my left eye, read, put it down to write (I’m left-handed), and repeat the process. I got a CCTV (the kind you can point at a board, and in college that made things much easier.

As for picking out a face in a crowd, I haven’t been able to do it yet, but I remain optimistic. I detest looking for people in crowds because it takes a long time, but it can be done. I have to remember what the person is wearing, height, etc. For example, when I look for my mom, I look for a dark-skinned woman, whatever she’s wearing, someone around my height, and a purse worn across her body.”

I never could see the blackboard. The teachers always told me to walk up as close as I needed to but that was a little embarrassing as I was so incredibly shy. I have a lot of difficulty picking someone out in a crowd. I try to remember what they are wearing and look for distinctive features like body shape or hair style, etc. I drive with bioptics, but I tend to drive as little as possible because it takes an extra effort to discern what I’m looking at or to find the entrance to a new place or the turn for a road I’m not familiar with. I’m a nurse, which is a very hands-on, in-your-face job so my patients tend not to notice my vision problems initially. The recent conversion to practically 99% electronic records has helped tremendously. I never enjoyed trying to read doctors’ handwriting”

My vision is 20/200 uncorrected and 20/70 corrected. I wear rigid contacts which I find helps to slow the nystagmus just a little. I drive without optics but a GPS is my best friend otherwise I would be doing U-turns all day long when going somewhere new. I cannot read sign names until I am almost under them. As far as watching TV, my couch is about 10 feet from the screen and I don’t have an issue seeing faces and images, I definitely cannot see subtitles unless I’m at least one foot away from the screen. As far as picking someone out in a crowd, it is very difficult. I rely on familiarity of height, weight, skin color, hair color and outfits. Oh and I depend on my hearing as well. So I guess other senses are heightened as well as skills are learned to accommodate for the low vision.”

Each one of these people have different corrected and uncorrected vision yet all show similarities in their descriptions of how they see. Bright lights or too much darkness can affect the overall picture the person sees impairing vision even more. Tasks such as looking at a blackboard or projector screen is difficult as well as picking out faces from a distance. Most people cannot drive although it depends on their corrected vision and the laws pertaining to driving in the state/country they live in. I still wonder what its like reading a book, watching a movie at the theatre, riding a bike and how easy is it to navigate the grocery store with bright lights and signs that hang high above your head.

I guess one day when Nash is more vocal we will have a better idea of how he views the world. Nash’s ophthalmologist informed us that we wouldn’t really know the full extent of his visual impairment until he is roughly 7 years of age so for now we just have to enjoy watching him learn to navigate this world in his own time. I think the comment “Your child can see well enough to fool people into thinking they don’t have a vision deficit.” sums up how Nash’s life will be. It looks like he is doing it already.

 

 

 

To my mother

American Mothers Day just passed us by.

I LOVE to spend Mother’s day away from my children. I know, I know I should want to embrace my children and look around and be happy with all that I have. Well I am but its the one day of the year when I feel like I deserve some solitude and some time to think away from the hustle and bustle of my crazy family believe me it doesn’t happen any other time. I did manage to get out, find some peace, do some yoga and just breathe.

I thought a lot about the whole day and how it came about: The official Mother’s Day holiday emerged in the 1900s as a result of the efforts of Anna Jarvis, daughter of Ann Reeves Jarvis. Following her mother’s death in 1905, Anna Jarvis created Mother’s Day as a way of honoring the sacrifices mothers made for their children. Motherhood is a sacrifice in itself, you lose yourself in it, it surrounds you, fills you and consumes every last part of you. Life is never the same.

Mother’s day is the one holiday of the year that I really try to embrace. Firstly because I have a mother and two I am a mother and now that I am a mother I realize its the hardest job and it never ends ever. I am glad that Anna Jarvis concieved this day to celebrate all the wonderful women in the world who guided us, loved us and who never fail us.

I think about where I am today, the choices I have made, the children I have, the way I want to raise those children and I think about my own mother. Without her never ending dedication to me, to her family I wouldn’t be the person I am today. Her strength and guidance never fail me even when it maybe fails herself. The last few years have been a rollercoaster for all of us but in the end I know I always have her love and support even if we don’t agree. She is my guiding light when everything else is dark.

Thank you mum. Thank you for all that you do. Thank you for bringing me into this world and believing in me. You taught me life doesn’t wait for you that you need to go out there and embrace it. I would not be who I am today without you and I would not be the mother I am if it were not for you. Our boys are lucky to have you in their lives. I am lucky to have you in my life.

With love your daughter.

 

Albinism diagnosis and beyond

So you find out your child has a condition what ever it may be and you start asking questions such as what next and where do we go from here.

In my husband’s case Nash’s life flashed before his eyes thoughts like:

  • How good would his vision be?
  • Will he ride a bike?
  • Will he drive?
  • How will other children interact with him?

Now that he is a one-year-old and we can see what a little character he is I have no doubt in my mind he will be just as able as any other child. The bike, the driving, the vision don’t really matter in the end, maybe his vision will be a lot worse or a lot better than we expected and if it is a lot worse then yes he will not be able to drive. My brother doesn’t drive and at 34 years of age I know he does just fine. There may come a time when wanting to ride a bike and not being able to become a reality (I hear it is incredibly hard when your depth perception isn’t great and your vision never stops moving) but there are other activities and sports he can turn his attention to.

My husband and I started doing a lot of research so as not to get carried away with how terribly debilitating this would be for Nash. When Nash was first diagnosed with Ocular Albinism we found a Facebook group of the same name to join and we signed up for NOAH (National Organization for Albinism and Hypopigmentation) both were incredibly helpful. Next we were referred to the genetic department at Texas Children’s in Houston. The eye specialist there is known for working with persons with Albinism, one of the positives of living in Houston.  In order to confirm the diagnosis of Ocular Albinism the specialist had to check my eyes. A mother who is a carrier for the defective gene causing Ocular Albinism presents a motting of pigment in her retina, he told me it looked like a mosaic. The results of this showed that I was not a carrier and therefore Nash had a different type of Albinism.

The Ophthalmologist suggested OCA2 and was directing the geneticist to search for the genes responsible for this type of Albinism when testing came about. We decided at this time to put the genetic testing on hold for various reasons. At the end of the day there is no cure for Albinism, no one can magically re-route Nash’s optic nerves or lessen his photophobia and the treatments are all the same.

During this whole period of ophthalmologist and genetics appointments a good friend informed me of a program called ECI (Early Childhood Intervention Program). I don’t know if ECI exists in every state but they have been a wealth of information for us. They provide free services up until the age of three to children who are visually and hearing impaired. I love chatting with Nash’s ECI visual impairment teacher, she reserves no judgements and offers no pity. Her job is solely to help with Nash’s development and keep us on the right path.

In the end all I can say is the diagnosis of Albinism isn’t a life sentence for your child. It is scary at first, luckily this wasn’t our first rodeo with a baby because let’s face it that’s scary enough, and as most of us all know it is daunting going into the unknown. Thanks to the age of the internet and social media there is so much information out there it’s just a case of knowing where to look.

Nash has bigger things to worry about right now like big brothers

Nash has bigger things to worry about right now, like big brothers.

(Picture above is a black and white photo of Nash being held by his big brother on the sofa, Nash looks scared).

Wide-eyed glances

Its been over a year since Nash’s diagnosis and the one thing that I have had a personal struggle with more than anything are the wide-eyed glances I get when I am out with my boys. Generally I try to hold my head high with Nash strapped to my front and my 3 year old running around my feet but sometimes it gets to me.

I do understand why people stare, I mean the kids adorable firstly (no bragging here). But he is also white, almost as white as a new Word Document with no letters in it and incredibly blonde with blue eyes. He also looks nothing like me, in my mind he completely resembles Dad: the nose, the eyes and the cheeky grin are all my husband. It can be a little disturbing looking at the child you gave birth to and struggling to see a resemblance.I wonder if that is how my husband felt when our eldest son was born. He had jet black hair, fuzzy ears, hair all over his forehead and olive skin.  I am happy to say the hair is just localized to his head now.

Not too long ago we were strolling around our local mall to find shoes for my eldest son and literally everyone who walked by did double takes. I often get the “Are they both yours?” (as if I would willingly strap someone else’s 22 pound baby to my body, do you have any idea the kind of back ache I have).  If I have the time I try to educate them a little bit about Albinism and if I have had a trying day and that comment seriously pissed me off then I usually smile, give a fake little laugh and say “he takes after his dad”. This statement always feels like a lie like I am ashamed but in truth he does look like his dad and sometimes I just cannot deal with complete strangers and ridiculous comments.

At the end of the day I am not going to tell a person what to say or how to act towards other people. There are loads of blog posts berating people for their insensitivity in situations like this. I also don’t want to seem like some whiney parent “Oh poor me” because in reality we bear the burden of worry like all parents. In truth the person most affected by Albinism is Nash. When people stare at him and our family it just reminds me that he is different and that maybe people will be staring at him his whole life. As a parent thats a hard truth to accept. I will say this though before you ask a question or make a off the cuff remark to a complete stranger why don’t you ask yourself is it the right one? What am I trying to achieve by making this statement or asking such a question? And if you do find yourself staring give us a little smile whilst your doing it – as Phyllis Diller said “A smile is a cure that sets everything straight”.

With that I leave you with the magnificent Dr Seuss just because I can.

Nash