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.

Hope you all have a fantastic holiday!
You'll learn the ropes quite quickly. I'm a mum to a child with DS. You'll probably also find that services can be an uphill battle.
Join lots of groups. These can be a lifesaver!

@ChangingTheNarative ignore them. There are some seriously sad people, whose own lives are so crap they have to bring others down.

They're pathetic losers and you’ve bossed your life, got it sorted and are going to have a fantastic holiday 😀

like you I know nothing about the individual circumstances of the OP and her son.

what I do know is sometimes yes things can change and become very apparent much quicker than you think. 6 weeks ago I was thinking I wouldn’t need to take Ds (13) wheelchair away with us for a one night trip as the itinerary I thought he wouldn’t need it. Then things deteriorated with his pain and strength so he actually ended up needing it the whole time. Things change and not always for the better.

I also know that often assessment processes highlight issues and you realise how much of an issue somethings are and what they actually mean. You also learn there may be things available which can help everyone cope better which can only be a good thing surely?

but at the end of the day the OP is taking sensible steps to make the journey easier and safer. Why are people taking such issue with that?

Just ignore the weird comments OP, I can’t imagine the people behind them
have much experience of travelling with toddlers. I want my NT 2YO restrained on a flight too because well he’s 2!!! My older DD got loose in a business class suite during take off at that age and that was not a damn thing anyone could do about it. Since then it’s the car seat all the way. It’s also lovely when they fall asleep and you need the loo and you can just get up and go because no one’s head is on your bladder and all you can think about is that you must hold it because the alternative of waking them isn’t worth it 😂

I see you've resolved the issue OP, but just to say, there are plenty of extended rear facing seats suitable for a 2 yr old. My sons both had them in my small car, until they were 5. Both sons are above average height wise.

That depends on the airline. Virgin state it must be in the last row. BA that it can’t be used on a seat on an emergency exit row or the row either side.

I wonder if there's a charity or other organisation that would lend you one of those £3k restraint harnesses you mentioned? Or rent one to you for a small fee? Surely people don't buy them outright just for an occasional plane journey! It's worth a google.

The only approved harness across all airlines is the CARES harness; and that doesn't need to go on the back seats, it can be used on any seat. I think whoever has been talking to you at TUI is misinformed; although they're probably trying to help.

The car seat argument is a non-starter; there are no British seats that meet the requirements anyway. You can sometimes get a couple on board; but you run the risk that they'll be checked into the hold as they shouldn't be used on the plane, and taking that risk wouldn't work for your toddler.

They do loan them which is great but we travel in October and you have to go to an assessment centre and it's quite long winded and takes awhile so wouldn't be ready for us but it's an amazing thing they do for people who are more prepared and on the ball than I am.

I'll buy the CARES harness. Is this the right one? Thank you x

Also for future reference OP, the US based carriers are much more accommodating as they’re not legally allowed to refuse a FAA approved restraint eg the cares harness

The only approved harness across all airlines is the CARES harness; and that doesn't need to go on the back seats, it can be used on any seat.

That depends on the airline. See my pp, Virgin state it does need to be the last seat.

Double check the car seat situation because I think it's the opposite, you can only use forward facing seats. Ok mine are adults now but I used forward facing car seats on planes until they outgrew the harnesses, my eldest is autistic. I also never told the airline about her autism nor asked for extra help. All families can bring on compatible seats. The only thing I would note that if you fly into USA or Canada seats must be faa compliant (my graco ones were)

I should add that I didn't want the airline placing restrictions on us which happened to friends, so I preferred to just manage things myself. By 6 she was much more predictable but we found travelling by car and ferry easier (I lived overseas prior hence lots of long haul planes)

If you don’t want to pay to buy one it looks like you can rent one from here from £15: https://tinyexplorers.co.uk/product/kids-fly-safe-cares-child-airplane-safety-harness/

Hey can I ask (not being goady at all just not understanding) why he needs a harness on the plane? My son has a genetic mutation causing severe autism / developmental delay and intellectual disability. He uses the normal seat belt on the plane. I'm just wondering why this isn't possible? But as I say not being goady at all, just trying to understand your specific situation which is obviously different to mine!
I've felt rather stressed about traveling in the past but it usually turns out better than I feared!
Good luck and I hope you find a solution that works for you.

Oh I'm sorry I just read the thread properly and see you already answered my question.
Glad you got it sorted!! X

I hadnt realised they had specific rules on them, thanks for links. I didn’t even think to check when I used ours, as I decided it was an “extra” safety thing that was necessary to us. Technically at the time DD was safe in her own seat, but I didn’t think the lap belt would be effective enough. I get not using them around the emergency exit seats. But they are unobtrusive for other passengers. I’m not arguing with you BTW - I just sometimes despair about health and safety going a bit mad, loads of extra rules. I say that and HSE is my husbands job! I absolutely do get it! But this seems a bit crazy to me. I really feel for the OP.

Oh I despair too. DS1 uses a special tomato seat or stabilo and they are allowed on some airlines and not on others. It is frustrating.

I didn't realise some airlines allow Special Tomato seats, we have a Firefly but my little one hates it whereas he's comfortable in his Special Tomato, I was thinking of taking him away next summer so that's useful to know, thank you.

Some do. BA don’t allow it or at least didn’t when I last checked. Virgin, Emirates, Jet 2, Oman Air, Ryanair and Qantas definitely do. You can’t put the strap around the seat, but that isn’t a problem, you don’t need to. Tryb4uFly is worth looking at. You can try a special tomato seat on an aeroplane seat there.

Op, have you really thought about a long haul flight? The have a ASD child who is 5, and we haven't booked anything yet due to the flight. Imagine putting your child on the sofa for 10 hours and not moving. Is he really going to be able to cope with that without a meltdown? Could this be quite distressing for him?

I haven't read all the posts however I wondered is it worth asking the consultant who diagnosed your son regarding a suitable harness? One that wouldn't restrict him too much and still allow him movement? Some consultants are good on suitable types of equipment or medical staff in the department or within the child development unit may know? Just an idea.

the britax eclipse is a forward facing car seat suitable up to 18kg which is flight approved for many airlines. It’s discontinued but plenty available second hand which would be fine for the plane. You need to buy the airplane belt for it though. I’ve also known some people get the Joie Steadi on planes but that’s not specifically CAA approved.

So many arseholes on this thread.

Take a look at yourselves FFS