Airline cannot accommodate disabled toddler

[ChangingTheNarative]

Hi all,

I was wondering if anyone had any advice, I don't know if anyone will but it's always worth asking.

My son was diagnosed with a genetic disorder back in March (developmental delay, mild intellectual disability, autism and adhd) and he's currently on the ASD pathway.

We booked the long haul holiday in June and at that time we didn't know anything about his condition really or how it will affect him.

It's clear now he'll need a harness on the plane which the airline can provide but they have to be put on the backseats however they are booked so we can't have them which is fair enough.

We cannot take a forward facing car seat on and he won't fit in a rear facing one as he's the size of a 4 year old so they suggested a specialist restraint which is £3k (we can't pay this) and that's the only way around it.

I'm at a loss and don't really know what to do or what I can suggest to them.

I wanted to try and treat my son as normal as possible and take him on holiday but I'm thinking my only option may be to cancel?

I thought I'd ask here before I cancelled it though in case anyone has any ideas?

Im not sure what exactly but worth asking

Thank you so much.

Also, just because one airline allows something, doesn't mean another airline should as they almost certainly will be flying a slightly different variant of aircraft. Then there's a different series of each model of aircraft - many of which can vary massively. For example the 747-200 series is VASTLY different to the 747-800 series.

Some people need a harness to ensure they sit upright as they have such low muscle tone that they cant self support. Your snippy dig at the OP was unnecessary.

Unless you know the child in question how on Earth can you say that to be true?

So you know better than OP what’s best for her DS do you?

Also it’s actually recommended to have them restrained in a cares harness or car seat by the FAA because it’s a lot safer, not just in the unlikely event of a crash but also if you get turbulence. And from selfish perspective it’s much more pleasant when they fall asleep in the carseat rather than on top you! Finally it means you have the carseat for use at your final destination without either risking damage in the hold or a shitty one from a the car rental company. You see it less in Europe but it’s really common to see young kids traveling in car seats on US flights.

Does he need a harness for postural support or restraint?

I have a 7 year old DD like yours and did a long haul flight last month without the harness.

We managed it by making sure someone from our group was sat directly in front of DD so if she was kicking chairs it wasn't a stranger she was kicking. We sat her next to the window with DH and I in the two seats next to her so she was wedged in. We took it in turns to sit next to her and basically sat for the whole flight with our hand over her regular airplane belt switch so she couldn't undo it 🙈.

We didn't get hot drinks so no chance of her knocking them over. Didn't get any alcoholic drinks so we had our full wits about us 🤣. All food for the flight was kept on the tray nearest the aisle seat so DD couldn't throw any of it etc etc.

Is he incontinent? Our plane had two toilets side by side which they were able to open up so we could change DD lying down.

Ring special assistance and see what they say, they'll be able to give you a bigger luggage allowance for pads/medical equipment/wheelchair etc. Use your SN pushchair or wheelchair as often as you can!! We were also able to take DDs special needs safe space travel bed.

If little one will use a tablet to watch something buy spares and load them all up with a full battery. We only had one which ran out of battery half way so in hindsight we should have predicted that and taken an extra tablet or two .

It's hard work but it is honestly doable and it was worth it but you have to be mega prepared. It's like preparing for battle lol, you just need to adjust your expectations.

Also what airline OP?

It's TUI

Have you come across the leckey firefly Goto seat. Can apply for charity / family fund funding is a few hundred pounds. Can use that plus normal airline seat belt. If on a local asn network someone may be able to lend you obe.

It’s not an area I know much about as I avoid flying with ds but if you’re on Facebook there are some great accessible travel groups which may be another source of advice for you.

https://www.qef.org.uk/service/accessible-aviation/tryb4ufly/ may be able to help to with finding what is best for him

If they insist all harnesses have to go on the back seats then I’d hope that it really so for some safety reason and not for something to do with their convenience and I suppose they just have to be given the benefit of the doubt.

It does look like there are some good options for you to look into and discuss with the airline. Don’t back down easily! No one likes sitting in the back row of a plane so it’s likely that anyone who’s chosen and paid to book those seats has done it so they can sit next to whoever they’re travelling with. That could surely be accommodated elsewhere if the airline make the effort. If they can’t they should be helping you find different flights that work.

Whatever happens I hope you get an outcome you’re happy with.

Thank you everyone! I've spoken to a really lovely man and he's sorted the back seats out but we just need to provide the harness ourselves so I'll look at the ones suggested.

Thank you so much everyone, I'm so relieved!

I’m assuming you’ve read this info?
https://www.tui.co.uk/discover/disability-and-autism-friendly-holidays#:~:text=ON%20THE%20PLANE&text=If%20you%20have%20a%20disability,or%20carer%20join%20you%2C%20too.

Is there any mileage in asking TUI to change your holiday? It seems that it’s far easier to get an appropriate holiday before you book rarer than trying to adapt an existing booking with hindsight.

Excellent! Hope you all enjoy your holiday x

Brilliant have a wonderful time!

His diagnosis is irrelevant really, surely his behaviour is largely the same when you booked the holiday less than 2 months ago?? I don’t think it’s really fair to blame the airline not being accommodating when you felt fine to just book a regular seat with no considerations to anything else.

You will probably need to phone up and see if you can pay to swap to another flight with free seats at the back.

Will he fit in a crelling harness? They're about £150

I dont think she has blamed the airline for not being accommodating though.

I suspect the reason the harness can only be used on the back seats is to avoid straps interfering with screens/tray tables of the people behind. So anything requiring a strap that goes round the seat won't work

Again his behaviour has changed since I booked the holiday unfortunately and I didn't really know the ins and outs of booking things for children with additional needs. I'm new to this and still learning the ropes of what's possible and what isn't.

It's sorted now anyway and I didn't blame the airline, I just stayed at the time they couldn't accommodate him which was true - there was no blame, I was just wondering what I could do.

Lol at you. What is your expertise in SEN?

Cybex also do rear seats for up to something like 12 years old. Or something like that.

they also were the safest car seats in the uk at one point according to which.

I could see if they can offer another flight and pay extra if needs be

I think that this is your best option and it may not cost as much as you think

I'm glad you have got this sorted OP. Id have gone in on requiring the back seats for a reasonable adjustment and seen if that made a difference. If people simply prefer them then they should be moved.

I hope things settle down for you too soon. Apologies for a slightly snippy reply to another poster,but I would love to say that my child's "behaviour is largely the same as a few months ago". I have learnt that SEN is a weird and wonderful world of not knowing what each day may bring. Oh how I long for consistency.

That is such good news. I hope you have a lovely holiday.

I see you have it sorted now so all good but I was going to suggest he might like a weighted shoulder wrap if he likes the secure feeling, not necessarily for the flight but i juts thought it may be of use in other situations.