One of the biggest concerns I had when we first learned Gilbert had albinism, was whether he’d ever be able to spend quality time outdoors.
His skin was so pale and delicate. We were terrified if we took him outside, he’d get burnt and increase his already high risk of developing skin cancer down the track.
He’d already burned once, a few weeks before his diagnosis. We had been so careful, shielding him as best we could from the sun. Yet he still sported a distinct redness across his nose for the next few days.
We felt bad enough before we discovered his albinism diagnosis. You can only imagine how much worse we felt afterwards!
We were initially daunted by the task ahead of us – it’s not easy managing sun exposure in Australia, one of the sunniest places in the world. Yet, we set out to find ways to allow Gilbert to enjoy time outside without compromising his skin.
Through trial and error, and learning from other albinism families, we discovered how important it was to get the following elements right. This is how we plan for outings with a child with albinism.
Planning outings with kids with albinism
Plan your day – it’s vital to have a good idea of how your day will go so you can protect your child with albinism as much as you can. When we’ve visited theme parks, water parks, zoos and playgrounds, we’ve always researched beforehand so we know the layout, the facilities provided and can identify potential places to rest and find shade when required.
Planning for us involves:
- Considering part day outings, instead of a full day one, to limit sun exposure. We’ve done this very successfully at theme parks in the past to ensure Gilbert is not overly exposed to heat, glare and UV rays.
- Identifying areas of rough terrain, stairs or uneven ground so we can prepare our son and guide him safely through them.
- Setting times for sunscreen reapplication and sticking to them. This is really important, particularly if there is swimming involved or the potential for excessive sweat from exercise, which will inhibit the effectiveness of sunscreen.
- Incorporating rest breaks, ideally in a shaded or indoor area, to limit sun exposure & glare. Gilbert is prone to headaches in the heat and after being exposed to glare for long periods. Knowing there is a place for him to rest and recover is very important when planning an outing.
- Limiting direct sun exposure by undertaking outings in the early morning or later in the afternoon to avoid the hottest part of the day. This is more comfortable for all of us and makes for a more enjoyable outing for all.
Dress with care – from the start, my son has pretty much lived in long sleeve shirts, all year round. He is used to this now and it gives me a level of comfort knowing his arms are protected. He also wears long pants or long shorts, shoes and socks, a wide brimmed hat and tinted prescription glasses to help manage the glare when out and about.
Keep the following in mind when dressing your child with albinism for the outdoors:
- If possible, dress your child in clothes with a ultraviolet protection factor (UPF) level of 30+. It’s not always easy to know if the clothing has a protection factor at all, but if in doubt, stick to clothing made from a thicker material and/or a tighter weave.
- Contrary to popular belief, dark coloured clothing is a better choice in the sun. Dark colours absorb more UV rays and offers more protection than light coloured clothing.
- Always choose collared shirts over round or v-neck shirts as these provides greater sun protection for the back of the neck.
- Organic or natural materials tend to breathe more, which reduces the chance of sweating and overheating, particularly when wearing long sleeved clothing.
- Consider taking along a spare pair of clothes with you in case your child gets wet, becomes uncomfortable or finds their existing clothing is not providing them enough protection.
Take along essentials – there are a number of essential items that should be taken along on any outing to aid and protect a child with albinism. These include:
- Vision aids – a binocular or monocular, portable magnifier or head mounted magnifying glasses can assist kids with albinism catch some of the action when out and about.
- Mobility aids – in some cases a cane may be required to assist with safe navigation and to indicate to others the child has a vision impairment.
- Sunscreen – make sure you have lots of it and that you’ve used it successfully before. Again, this will help you all have a great time if you are confident the sunscreen will do the job and not cause irritation or upset.
- Glasses and/or Sunglasses – these are a must to help maximise vision and reduce glare when outside.
- Hat – a broad brimmed hat or legionnaires cap are the best options for kids with albinism. Steer clear of baseball caps and bucket hats with a small brim to avoid unintentional sun exposure
Consider your mode of transport – the way you travel to your outing can be just as important as the day out itself, particularly if you are travelling a long way. Sun protection is vital, whichever way you travel. Some tips for travelling with a child with albinism include:
- Fit out your car with sun shades and, if you can, tint the windows to further reduce sun exposure and glare in the back seat.
- Purchase a sun shade for baby car seats or secure a baby blanket or wrap over the harness straps of a rear facing car seat to provide more shade.
- Encourage older kids with albinism to sit in the middle of the back seat to keep them away from direct sunlight coming through the side windows.
- If your child has a significant vision impairment, look into applying for a disability parking permit to make parking and mobility easier. You may also be able to access subsidies for travel on public transport too.
- When taking public transport, sit your child away from the window and choose a seat that’s easily accessible to an exit.
Planning outings for kids with albinism doesn’t have to be difficult. After a while all these processes become second nature and you’ll find it’s just part of your normal day.
And I can tell you, all the preparation is worth it when you get the chance to spend quality time with your family!
Do you or someone you love live with albinism? Do you have any further tips to share to enjoy outings with kids with albinism?