Standing at the school gates, it’s not unusual for me to overhear mums and dads excitedly discussing their holiday plans.
‘We’re heading off to Tenerife for two weeks,’ one excitedly says. Others boast about jetting off to Cyprus, Greece, The Algarve where they plan to do nothing but relax on sunbeds and sip cocktails by the pool.
Even the kids are excited, chattering on about all the fun they’ll have at a resort’s kids club.
And I can’t lie, I feel a twinge of jealousy.
I’d love to do this too. But a holiday like that is largely an impossible dream for my family and those like mine, who have disabled children.
I have four children: James, 12, Annabelle, 9, and five-year-old twins Oliver and Alex.
Annabelle has a rare genetic condition, FOXP1, that has resulted in a long list of disabilities: cerebral palsy, autism, global developmental delay and ADHD.
She has the mental ability of a toddler but the strength of an ox and her challenging behaviour includes headbanging, kicking and throwing if things don’t go her way. She needs attention at all times and I am always on high alert.
The stress and exhaustion are taking a toll on me, my husband Philip, and Annabelle’s siblings. Life is hard, especially for my children and we are constantly approaching burnout.
We are all in desperate need of a break, and I feel they deserve some self-care and a chance to enjoy themselves, even for a short time. But there is so much to consider.
My first thought is usually, does the venue have enough space for two parents, a child with special educational needs (SEN) and three other children?
The reason for this is that two years ago, we went as a family to the Lake District to visit a relative before she died. We stayed in a chain hotel that had a policy of two children per room so my husband and I were in separate rooms, each with two children – and paying double the price.
Next, I worry whether a place will be too crowded or noisy, and if there is a chill out, or sensory area?
Annabelle finds noise and too much sensory input triggering and scary, and it can cause her to freeze on the spot and cry, or sometimes throw herself to the ground. She deserves to have as relaxing a time as the rest of us.
I also have to think about what happens if Annabelle gets ill as she is regularly hospitalised. Will the venue have medical or experienced staff on site who could help?
And if there is a kids’ club, can they offer 1:1 for Annabelle, or enough affordable entertainment for my other children?
Last year, we travelled to a hotel in Dorset, which was able to provide a lovely spacious room that could accommodate all six of us together.
There was an outdoor pool and it was on the beach, which my kids loved.
However, without a kids’ club, Philip and I had all the children with us the whole time – we spent most of our time taking turns with James and the twins in the pool, and were never able to relax.
The expense also meant we could only go for one night.
And while we have travelled together, if we want to go abroad, we have to go separately.
James and I went to Lanzarote in October 2023, while my husband stayed at home with the younger three. And earlier this year, I went away with just the twins meaning my husband had to once again book annual leave to stay at home with James and Annabelle.
Despite offering some brief respite from the day-to-day challenges of caring for Annabelle, trips like these fragment our family and mean we do not get bonding time together.
And again, it only adds to the expense – I’m doing two trips rather than one, and they take up double the amount of annual leave.
Travelling, be it on a plane, train or in a car, poses obstacles, too.
What happens if Annabelle gets distressed and kicks and hits the seat of the passenger in front of her? What if she throws objects, or headbangs? Would it be fair on her, or the other passengers?
Some airlines don’t offer lanyards to let staff recognise that a person has a hidden disability, and disabled passengers frequently report wheelchairs getting lost or broken, assistance not being properly provided, and being left alone on an aircraft after it’s landed. I never want my daughter to be in that position.
However, ‘mum guilt’ at not being able to take my children to the likes of Tenerife, Cyprus and Greece is unbearable.
Both my twins and my tweenager are begging for us to go on holidays abroad together, like their school friends. James, my eldest, asks why we can’t just be a ‘normal’ family which makes me feel immensely guilty.
I don’t want my children to miss out. I don’t want them to feel different from their friends. And yet they are.
A holiday in the sun would offer us all a change of scenery and a chance to relax. I also think I would be a better parent because of it.
I often neglect my own well-being and my own needs. A holiday with some much needed R&R would give me the opportunity to recharge and not be running on empty, making me more capable of meeting the demands of caring for a young family and a child with multiple disabilities.
Families come in all shapes and sizes, and so should holiday accommodation and transport options.
Hotels should have some larger rooms to accommodate families like mine and I would love venues to provide autism training for their staff so they have some understanding and qualification in the challenges faced by special needs families.
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Even offering little things, like sensory toys, visual timetables or other picture aids like PECS which enable many non verbal children to communicate what they want, can also make a huge difference.
My dream holiday would be somewhere with a beach or a pool. There would be an affordable kids club that caters for my children’s range of ages.
It would be to a place that takes away rather than exacerbates some of the responsibility that weighs heavily on my shoulders – providing an opportunity for me to relax, and have someone take care of me for a while.
Most importantly, it would enable my family to reconnect, play and laugh together, and build special memories that not only last a lifetime but that remain for us to turn to in darker times.
Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk.
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