Flying with a child with special needs

[miche8]

I'm starting to worry about flying with my son who will be 4.5yrs when we go, we are flying to one of the greek islands so i think its either 4 or 4.5hrs away.

My son has a speech disorder, he has very little speech and what he does have is very unclear i have to guess what he says, he does have some understanding but you can't reason with him. He also had some odd/difficult behaviour and has been referred for an autism assessment.

I am also flying with my partner, ds8 and dd 18months - yes i am mad and should have chosen a shorter flight. Does anyone have any tips? is there any point in calling the airline in advance? as i don't think theres anything they can do really.

I really worry about what other people think and its not always obvious that he has something wrong with him, i get looks and sometimes comments when i have to carry him, i never know whether i should say something to explain or reply back to their comment which could be something like 'why don't you walk for your mum'

i ran out of room, hes very clingy, can be difficult by refusing to move, will lay on the floor, he also cries and sobs an awful lot. Thankfully he doesn't run away and isn't what i would call naughty, although he does sometimes throw things. I've already paid for priority boarding and i really hope we all get to sit together and this will set him off if someone gets seated away from us.

Airports can help families with children with SEN. Worth contacting their disability helplines. With me, they arranged for someone to go through checkout with me etc to ensure things go smoothly, for example. The actual airlines likewise may have some good ideas.

If a child has a special interest, does it link in any way with airports and flying? I know that I'm absolutely fascinated wth the planes so if I can see them land and take off, it keeps me occupied for hours. If you can think of something that will keep his attention, use it.

The terminals themselves are a sensory-overload nightmare, so finding the quietest possible corner is a good plan. Airports may be able to help with this too.

Books that explain about flying, in pictures, are brilliant so you can show a young person what will happen and in what order.

Would something like a Nintendo DS help? Depends if he's into that sort of thing but even if you've resisted getting one in the past, this might be the ideal time to cave in. Don't know how long the batteries last out?

miche8 know how you feel when you hear comments ie wont you walk for your mum. My ds has severe autism and doesnt talk, but it is very difficult because it is an invisible disability. If i were you i would contact the airline or travel company you booked through, they can usually help ie boarding first. They can arrange things like wheelchair assistance if your ds wont walk (lying on floor), which may make easier for you. You can use your own buggy/wheelchair or they will provide at airport for you. Try and not worry too much about other passengers hopefully your ds will be ok on the day. Perhaps you can take comic, colouring book or toy that may interest your ds. Another thing maybe a trip to the airport before you go so that he can see planes and airport before trip might make easier for him if he knows what to expect.

i went to paris which is only an hour by plane and unfortunately it was a nightmare its a case of if only i knew then what i know now and i did get looks and comments i didnt know DS had ASD back then but now if im on long car journeys flights ect i just take planty to keep him occupied and starburst or something of that nature (he gets car sick) and he doesnt mind the strawberry flavour car sickness (traveleeze pastilles) and id have a sick bag at the ready id also contact the airline as i didnt and DH and other DC's were sat different place to me and because of that i had a buisnessman sitting trying to work on his laptop during the flight and all he did was complain also the crew when you get on board might be able to provide things like crayons paper ect HTH

oooh forgot do you know about social stories would be good to do one about the flight /hotel ect so he knows what to expect andtake plenty of familier things with you another idea is buy him a book about planes flying ect and show him the holiday brochure get him a bit excited at the prospect

Manchester airport and the NAS have teamed up to produce a booklet about flying here.
Dont worry about what other people are thinking, just do your best by your family!
The pressure during take off and landing can be scary.
Take lots of stuff! DVD players, iPods, colouring etc etc. Good luck!

if you have a major buggy or similar the airline should let you take it to the door, and bring it back to the door when you land - that would save any difficulties with being freaked out by the wave of people moving along corridors/ walkways etc.

some airlines will want to have a record of the sn on the booking - in case of evacuation etc it is useful to know if there are passengers who have specific difficulties.

dd2 freaks out when the safety demo is on - or she used to. the voices and sound come out of nowhere, so look for the speakers when you get on and explain that there will be speaking/ noise coming out of them before the plane takes off etc. she is also terrified of the take off and landing - additional noise etc. the more you can explain in advance the better. prep and having a plan is essential!

Hi
My daughter has cp and I am sorry to say that I have found UK airports to be awful with dealing with children with SN, even with a visable disability like my daughter has. Gatwick is usally OK, but Bristol is awful. I was actually told, well she looks OK to me. I tend to find the more child friendly countries much much nicer so i think you should be OK in loud, children loving greeks. All the spanish airport I have used have been fab.
The actual airline wont be able to do anything I think, but it might we worth contacting the airport as it is them who arrange special assistence. Some airports do a pre travel visit for people who are scared of flying. Dont know if that would help in your case.
We have always been able to take SN buggy to gate but have never got it back until the buggage bit. We have offered an adults wheelchair which of course is no use to a 3 yo. So at the moment I put her in a backpack carrier, soon I will have to ride in the wheelchair with her on my lap.
I so hope your experience will be better
Good luck!

I've never had any problems travelling with DD2, who has a genetic disorder and learning difficulties, severe expressive speech disorder along with physical disabilities. She looks fairly 'normal' so her disabilities aren't immediately obvious.

My advice:

Tell the airline in advance you are travelling with a child with SN/disabilities, and remind them at check in. It is then logged on their system from check in. Ground staff will be made aware of you and cabin crew should offer assistance too. We have always had priority boarding and been offered assistance. We choose to board as late as possible so that DD2 isn't crowded by other passengers, and so that once in her seat she doesn't have to get up to let others in IYKWIM.

Take a Maclaren Major or similar sort of buggy; airports are huge and walking miles makes things so much harder. You can take it up to the gate and should be able to stow it on board ensuring you have it back immediately. If they can't stow it on board and give it back to you on disembarking then tell them you'll need a wheelchair.

Don't worry unduly about other passengers - you'll never see them again (except maybe on the flight home!)

Be vocal and tell staff what you need (always politely, but firmly). I find being quite explicit about what we need makes things happen.

Don't get too stressed about it. I have travelled alone with DD2 to Gibraltar twice when she was tube fed and non-walking, along with DD1 who was only 6. People fell over themselves to help me (and if they didn't I asked them LOL). We've also flown to Spain twice, as well as Australia! It's never as bad as you think it might be, as long as you are prepared and take lots of little books, some snacks, favourite DVDs and a portable DVD player, a familiar blanket, changes of clothes etc.

Have a lovely holiday!

We always tell airport in advance and have found Heathrow very helpful; they let us get on first and take wheelchair to the gate.

Hi

I fly alone regularly (Single Mum) with my ASD 8 year old and we clocked up 8 transatlantic flights last year. We have flying down to a fine art but the key is preparation - a portable DVD player is my life saver and essential ( I invested in one with a 13 hour battery) as is knowing your rights and arguing for them plus I always take spare food as it is always a gamble if he will eat the plane food - you are legally entitled to help at the airport and the airline has to help you - do not be put off with them saying that they can request help but not guarantee help and if they try it I have found the equality commission more than willing to phone the airline and explain that they have to help you. My DS cannot deal with the security lines so we get an airline staff escort through fast track as he bolts if stressed (I chased him across the terminal in Paris before I knew I could get this help). You are entitled to board first (DS broke open a security gate trying to get to the plane in LA as he takes calls to board as literally the plane is going and without him). The airlines all reserve certain seats on every flight for disabled but do not disclose this (normally the bulkhead seats and only someone in plaster or an infant in a cot gets priority over disabled. All airlines have a special needs department but they are hugely variable and we now live in Dallas and I fly pretty much only with one airline whose special needs department call me when we make a booking as DS's name and details appearing on their computer sytem prompt them to do so and who store all of DS's needs against his frequent flyer card. Gave up with 2 British airlines as one refused all help and the other it took 18 calls to secure what we needed. Manchester airport is fantastic as they have staff with SN kids and their customer service head was always amazing; Liverpool was a nightmare (you are not disabled unless in a wheelchair), Heathrow varies by terminal but hell would freeze over before I would try terminal 5 again with a SN child.

The Manchester guide for autistic kids is great not just for ASD kids.

I would also make sure the on board staff know if your child takes things literally - my last flight was going great and I had spent 3 weeks preparing DS for flying to London until the pilot thought it was huge joke to welcome us to a flight to Columbus Ohio at which point DS was ready to run as he took it literally and that we were on the wrong plane.

DS now takes it all in his stride but the prep is the key!

Second everything planomum says, I have also called the equality commission and put in a complaint about Bristols "special assistance". I think the problem is that the airports are trained to deal with adult esp eldery passengers and they have had no training for dealing with SN kids.
I tell the special assistence what is needed. ie this buggy is her wheelchair I can not take her out and fold it while holding her to put it through the scanner. You dont ask people in wheelchairs to do this so dont ask me. Everywhere but the UK has been fine with this but I have had to argue my case everytime in the UK.

Planomum
Thanks for the great advice. Can I ask about airport check in desks. This is a nightmare for us. Is there any way round this? Do special assistance help with the check in process?

thankyou for all your replies i shall let the airport know, would be handy if they would let us get on the plane last but reserve our seats so we are together. We are going to a quiet place and i just can't wait to see my son in the pool and on the beach, i just know hes going to love it.

Waitingforgodot
Hi

If you book assistance through the airline special needs departmnent tell them you need help at check in - we get this - and normally we have to go to the airline information desk rather than check in desks and they take it from there which normally means we get an escort from a member of staff who bypasses the line to check in - agree check in is anightmare especially if you have a bolter - my particular hell is Virgin check in at heathrow as it is complete chaos- noisy disorganised and way too many people as they book in all flights at any desk - huge sensory overload and trying to keep hold of the bolter plus manage your luggage trolley etc is a nightmare.

Key is to tell special needs department exactly what you need in advance and preferably confirm by e mail and take the email with you to the airport to show the staff there.

thanks so much. That's great advice. Now which airlines are particularly helpful planomum?

These are just my personal experiences of a few and others may have had better experiences with these airlines:

American and Lufthansa hands down are best.We now travel exclusively with American as they never make us feel it is an effort to give us the assistance - the other airlines make us feel so bad for asking.

Staff are so much nore aware - only issue I have had was the one pilot making the destination joke but you should have seen the speed with which the head of cabin crew got to us to apologise and made him come back and apologise to us.

BA horrendous - say only assistance is to put child in wheel chair and when you get to the airport and ask for wheelchair tell you that they are not insured to put a child under 6 in a wheelchair (he was 5 years and 8 months at the time); Virgin Ok if you are persistent vocal and threaten to ring the owner but never quite manage to get it all right e.g. assist on way out but look at you blankly on way back as if assistance both ends is an alien concept. KLM & BM hopeless and don't care; easyjet awful - only recognise wheelchair user as disabled despite waving Blue badge with child's picture in face of groundstaff; Various charters totally dependent on attitude of staff on the day.Ryanair equally awful staff attitude.

So AA get my money every time!

We are flying to Us next year and have spoken to various people have been advised contact the airport and the airline they often have a sn department .Were flying with VA from Gatwick and so far they have been great .We can keep ds chair to the plane and they will bring it back to plane when we land .Though does mean we are first on last of.
They have also asked if we wanted to bring ds to airport at all they will arrange for him to look round so not all new .

They are alsoarranging help with luggage etc as im flying on my own with the two children

Wer elucky in that ds pd are noticable ie wheelchair but once he has sat down you would not notice at first but his other ones no so much he is non verbal etc .

They have confirmed we will be sat together me dd and ds .Have asked where we are better sitting .We gone for bulkheads as no one in front of ds chair .They have said also incase ds needs chaging they can curtain this area of

i bought this book for ds before we flew for the first time five years ago!!

2009 our first fam holiday in 20yrs.
4 1/2 hours to Fuerteventura.
Made a social story with pics and few words to explain holiday. she loved this and carried it around with her ( laminated it on 2 inch squares ) put it on a safe lanyard.
Asked the doc for 'mild calmer' for pre flight.
Emailed airline and Airport ( Manchester )
Requested front medical seats handy for loo also priority boarding.
Used our own SN buggy that she was used to.
Used a 'crelling harness, approved for aircraft seat, for extra support/safety.
Alowed us to check in luggage 1 day before to avoid queues.
Went £1 shop ad stocked up on little surprises to open throughout the flight ( dont forget return journey )
DVD, fave toys for comfort, colouring books, and coloured pipe cleaners for making shapes etc....
Snacks/sweets for distraction.
I painted spanish on several tee shirts ..saying 'thankyou for understanding my disability ' I also wore a badge saying the same..
Manchester spot on with S/N disability as is Fuerteventura..
Liverpool (2010) JLA could learn a lot from them.
Try to ignore the general public and their stares or comments..they have issues they need to deal with.
Just wish we'd done it sooner.......
Happy holidays x

Slightly different issue than the OP, but for those who have flown with young children with CP or physical disabilities, what have you done about seating? My DS is 2, very small, and would certainly require support in a plane seat. I have looked on loads of airline websites and (other than Monarch who seem to have a special seat available but don't go to the right places!) none of them seem to offer any sort of special seat, or they say you can bring a crelling harness, which I have looked at but don't think would be any use for DS at the moment as he is too small. Having him on my knee is absolutely not an option as he can't keep still (athetoid cp) and needs to be restrained in something! His car seat is enormous, and apart from the fact that I doubt it would fit in the plane, I don't fancy having to lug it and DS around the airport beforehand and after. I'm feeling a bit despondent that there doesn't seem to be anything on offer for people in our situation, and I know we're not the only ones!!!

Hi i know Virgin have special harness as friends flown to the Us and her son needed full body support .Theres also a seat thing that they sit on then they suck air out so mould round them .

But guesisng crelling may be your best bet .Give crelling a call and explain they may be able to help they are lovely and friendly

HI miche
Been there, done that and still do with 2 SLD boys. 1st time was when they were 18 months and 3 yrs, a short flight to Spain- traumatic but was ok. 2nd time a little older, elder ds was sick 5 times b4 we even got on the plane and then managed it again on the plane all over hubby. Had to laugh tho- he insisted on sitting next to other son on way home...yes you've guessed, other son was violently sick all over him...oh how we laughed!!!!!
They're now 12 n 13 and much better but it's still trying and has to be planned like an army manouvre.
I did ring the airline SEN helpline once- waste of time that was- the stupid woman insisted that, as the boys didn't require wheelchairs they clearly weren't disabled. However since then i think they've progressed- they can't do much but will allow you n your family to go first, no queueing, it just means you'll be 1st on the plane along with the wheelchair users which may be less traumatic for your son if he isn't being jostled and having to queue with strangers and crowds etc...
Make sure you take plenty of things he likes, toys or a blanket, tell the steward/ess as they are generally very good and will make sure you're all ok.
Or you could always ask the doc for a dose of something to calm him b4 the flight, something like valergen (anti allergen medicine), maybe take him to the airport b4 you go to see the planes taking off, or if that's not possible show him lots of pictures or telly progs with planes and explain that's what he's going on...
Best of luck, he might surprise you ya know and be brilliant.

will the doctors give something to calm? What have you been prescribed and did it work?