How To Plan Your Wedding With Hidden Disabilities in Mind
Written by Erin Balfour
Photography by Sara Frost Photography
As a mum of two children who both have what’s known as ‘hidden disabilities’, attending even family gatherings, never mind weddings, is a huge challenge. My husband and I usually spend the whole time anticipating or soothing their sensory overloads and missing the event, or sometimes if it’s all too much we simply have to leave early.
What is a hidden disability, you might be asking, and why would that happen? We’re all familiar with disabilities where equipment such as a wheelchair or hearing aids makes it clear that someone needs additional support, but what about when there are no obvious pointers like these to suggest that someone might be struggling? Neurological conditions like autism spectrum disorders, ADHD, sensory processing disorders, and a whole host of ‘syndromes without a name’, don’t always come with support aids (although lots do). Many of them come with ‘invisible’ characteristics such as being overwhelmed, and actually pained, by noises, smells, and lights, which can be really challenging and actually impossible to cope with in a noisy, busy, ‘neurotypical’ world. We are beginning to accommodate the needs of those with these disabilities – we have quiet hours in shops, and autism-friendly performances in theatres and cinemas where the house lights aren’t totally off and the volume is lower – but we still have a long way to go…
Now a wedding day, with its hustle and bustle, and a high likelihood of having extended periods of waiting and milling about, can be extremely difficult for those with the type of disability described above, and for their carers, especially if we’re talking about children. A very common characteristic is the need for a clear and rigid routine with no deviation from what’s been decided. The consequence of this not happening usually leads to what’s known as a meltdown – and no this is not a tantrum, but rather the end result of building pressure inside a person because they’re unable to process or cope any longer with the unexpected and the overwhelming. And it can cause them actual physical pain. Imagine you’re in a room with twenty televisions on, ten radios, five people asking you questions, lights flashing, perfumes being sprayed, and you can’t distinguish between any of them, nor filter them. You would want to collapse and scream! A crude analogy, perhaps, but it goes a little way to explain exactly how overwhelming things can become for those with sensory processing difficulties.
But the good news is that there are measures you can take to smooth the way as much as possible on a busy wedding day so that everyone has the best shot at enjoying themselves. It’s all about anticipating needs and accommodating them where you can.
Here are a few things you can do to make it easier for neurodiverse guests and those with complex needs to attend your wedding.
BEFORE THE WEDDING DAY
Provide your guest with the order of the day in advance so that they know what will be happening where and when. This could include the seating plans, the order of service, the menu, and even itinerary information from the planner. If there’s nothing on the menu that they can cope with, consider asking them what they would like and asking the venue to reasonably accommodate this. If the caterers know in good time, there’s no reason why this can’t happen. And some may have a carer with them who isn’t their ‘plus one’, so make sure there are enough seats and meals!
Using the web to do a little research on the type of disability your guest has is invaluable. A school mum friend of mine did some reading around autism so that she could advise her daughter on what my son would need and also what he would find unhelpful. That totally touched my heart, and has really helped him. A little knowledge goes a heck of long way.
You could also just ask your guest directly what things they might find difficult so that you can either think of an alternative or understand why they might not be able to be present during certain parts of the day.
Help guests to research the venue. If it’s a church, maybe arrange to go on a few short visits with them to get to know the place. Churches, especially older ones, might have funny acoustics, so it’s best to know that in advance so they know to definitely pack the noise-cancelling ear defenders!
In fact, with any venue it’s a good idea for them to get to know where everything is and familiarise themselves on a more relaxed day with no pressure. Does it have adequate changing facilities if they have continence issues? A place for wheelchairs and other big equipment? As I said above, these types of disabilities don’t always come with aids, but a lot do.
Also has the venue got WIFI so they can access their calming apps and familiar programmes on a tablet? If not, consider getting a portable WIFI hub from your phone network provider.
Speak to the manager in advance to request a quiet area for in case things get too much on the day. A place your guest can go to come down from overwhelm and to reset in their own time before heading back into things. This will be their absolute lifeline.
ON THE DAY
Educating other guests will be one of the most valuable and appreciated things that will probably happen. A meltdown isn’t a tantrum, as mentioned earlier, but you’ll no doubt have to actually spell that out for those who have no experience of sensory related conditions. Be prepared to fight the corner of any guest who experiences overwhelm and meltdown – and know that awareness and information is key to acceptance and it’s worth doing.
And you may well have to advise that a guest isn’t rude or offhand, but instead could be struggling with social interaction and small talk.
If things have well and truly become too much for your guest, reassure them that if they need to leave, it’s totally fine and that you understand and love them.
If they don’t have a carer with them on the day, organise one person, a buddy, who they can turn to for help and support. Communicate to them who this will be in advance, and suggest a meet-up beforehand if they would like this.
Request at reception that the disabled loo key be made available to your guest whenever they need it. Again, because the disability is invisible, you may need to defend them against people who only associate disabled loos with wheelchair users!
Some alternatives and ideas for the styling and entertainment
Consider having fake flowers, if not at the ceremony then at least at the evening do or the meal. Flowers smell beautiful, but to those with sensory difficulties they can cause major anxiety as they can’t filter them out.
Along the same sensory lines, could you have a silent disco? And fairy lights in the evening? If you do have a DJ, tell them to have no strobe or flashing lights and also keep the equipment cordoned off – younger ones can find it impossible to resist the urge to explore such inviting stuff, especially if they’ve taken an obsessive liking to it! The key is to think of all the things at your celebration that involve any of the five senses and see if there’s a quieter and less ‘in your face’ version of it.
Tell your guest that it’s totally fine to wear whatever they feel comfortable in, rather than feeling under pressure to go smart. A common trait for those with sensory difficulties is that seams and clothing labels are maddening and cause a lot of suffering.
Have a quiet children’s area with soft play, cushions, blankets, books and a few toys, etc., so that they can chill out a bit. You could even look into booking a SENCO (special educational needs coordinator) key worker from a childcare or nanny agency, or a nanny who has SEN training that also covers lone working. They’ll have all the relevant and up-to-date DBS (Disclosure and Barring Service) clearances, insurance and qualifications so that both you and the venue are reassured.
Seating-wise, could your guest sit at the back of the ceremony, or near the exit at the meal, so they can slip in and out as needed? Could you include them when you’re doing your meal plan seating list? Having to make small talk is not possible for many on the autistic spectrum, so consider that they may need a quiet table filled with people they’ve chosen in advance.
Further to this, could they bring their own food to ensure they’re totally happy and not anxious at being confronted with foods they have an aversion to? The meal will have been planned with them, as mentioned before, but the canapés, not so much!
If a guest declines your invitation
Even if you all strive to put these things in place, sometimes it’s just too much for a loved one to attend. The daily and nightly battles faced by families who live with disabilities can be utterly draining, and many find they become more housebound as it’s just less upsetting all round to stay where it’s familiar rather than battle in a world too difficult at this time. Try not to be offended: it might just be too much of an ask and it’s definitely not an excuse or a personal slight. Parent carers can’t just ‘get a babysitter’, either. Children with complex needs require very specific care.
If this does happen, one idea is that the family could send a representative to your wedding. But if no one can attend the big day, suggest meeting at a later date for a quiet meal to celebrate, or something similar that they’re able to do.
I hope this has helped. People are people, but the world as we know it is still ordered in a very neurotypical way, with its accompanying demands and expectations. People with the difficulties and hidden disabilities touched on here are not lesser, they simply think differently, and have different needs. And the world can therefore be at odds with this and difficult to negotiate for them. If we all communicate and love each other and strive to understand, from both parties, then everyone can have a fabulous wedding day. Which is exactly what we all want. Party on!
These are my go-to websites for information on all sorts of disabilities, and I recommend them wholeheartedly: they’re packed with accounts from both the organisations and people with disabilities themselves.