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'

Hi Badkitty

I fly with DS who has low muscle tone, is not walking and is rather large (18kg!). Last year when he was 2 we flew from Australia to UK and return. I had had a disastrous short flight with him a couple of months beforehand which included non stop screaming, arms and legs flailing, me holding him to the seat because the seat belt didn't stop him slipping down and a nearby passenger being moved because "there is more room down the other end of the plane". I looked at the CARES harness, but as DS is a bit floppy, I thought that he would be really uncomfortable in it so I felt that the only option was to put him in a car seat.

I bought a car seat that is designed to go in smaller cars because once you have bought 3 tickets for a AUS/UK return trip, the cost of a car seat doesn't seem that much in comparison! However, many carseats do fit into airplane seats. It is a REAL hassle to lug the car seat around the airports and fitting the seat was a nightmare when they did not pre-board us BUT DS was very comfortable and beautifully behaved for the whole 23 hours that we were flying so I felt that it was worth it.

Have you looked at Virgin Atlantic and British Airways (long-haul)? I'm pretty sure that they have infant seats that you can book.

Bad kitty - My DD also can not sit one a plane seat. Over the age of 2 they cant sit on your lap for landing and take off anyway. I used her car seat (any child can use a car seat with a 5 piont harness up until 3 i think) I boughts a folding luggage tolley thing and attached it with bungy cords to transport it around the airport. It was excellent as she was so comfy and its familiar.
Now she is abit stronger I use a special tomato seat liner which provides enough support and I need to use at our destination anyway.

www.specialtomato.com/

oh im liking those seat liners would save ds needingto stay in his wheelchair and would act as booster as well becuase on normal chair means his chins around table level and i have to watch out for him falling of

Thank you for the tips - we'll only be going short haul, looks like car seat is probably the only option till he is a bit bigger! Which car seat did you get StillinmyPJs?

Like the luggage trolley idea as well thank you!

Hi Badkitty
We're in Australia and so I bought an Australian Britax Compaq car seat designed for smaller cars. It also happened to be one of the lightest car seats available and it reclines! Other travellers were joking to us that DS was in first class! It is quite similar to this one here

If money was no object I would have got one of these to use as a buggy around the airport and save all the lugging around of an awkwardly shaped large object, but importing stuff into Australia is hideously expensive. It looks like isw had a more cost effective idea!

That is super-helpful, thanks!! Actually starting to think this may be possible :)

Hi, I've kind if got the same worry. DD is currently in the process off possible ASD diagnosis but has not been diagnosed yet. Not sure how long the whole thing takes but I'm concerned we won't have an official dx by the time we go on holiday. The problem is that last time we flew, DD pulled a major tantrum one the flight back. She really was going crazy and the staff even asked us if we needed them to land the plane. We were only about 10 minutes into take off. Not sure if they were being helpful or threatening but I won't dwell on that. Anyway, my worry is that I would like to be able to let the airline know that she may have difficulties at the airport and on the plane. It's a long time for her to sit still. Last time, we had an hour drive to the airport, 2 hours at the airport and then 9 hours on the plane. This time its only 20 minutes to the airport, again 2 hours at the airport and 4-5 hours on the plane. Not sure how things when we land there but I know we have a transfer. I'm still considering bringing a buggy (she will be 4.2) so that the walk thru security might be easier. I just don't know whether its appropriate to tell them about SN if she hasn't had an official dx yet.

i am booked to travel next year with ds an d Virgin are aware and now realstically im going to be needing wheelchair for distance at the very minimum anyone know about limits on flights

I'm travelling tomorrow. My ds has dx of deafness and gastric problems. He has behavioural problems but they're not dx. I rang the airline and spoke to them and they said he doesn't need a dx to have assistance. So they put him down for special assistance due to behavioural issues. He can walk long distances and we don't have a buggy or anything. But if he decides to throw a tantrum there is no way we can carry him those distances and cope with dd and bags so we decided to get help from the off. He also can't manage crowds at all and will hit and run fast in the opposite direction if he's forced to stand in a crowd. So they said he'll get priority boarding. Thank god because he can run faster than me now!

That sounds just like my DD!! She is a runner. In fact DH and I have joined a gym just to get fit enough to catch her!! As for wheelchairs they are allowed over and above your allowance.

Agree wheelchairs, and I think another piece of special equipment is allowed over and above allowance (we have taken DD's gait trainer in our luggage before). I fly with DD once or twice a year transatlantic (dx - cp) with wheelchairt and carseat. I have a Radian Sunshine kids carseat which is taller than most, but low-profile so slots nicely into airline seat. It also folds flat for lugging around the airport - easiest way is to buy extra straps for it and carry as a backpack, as it is very heavy. On one flight the attendant went and got his little book of carseat rules to check - if a child is in a carseat becuase they are an infant, then they have to get out of the carseat for takeoff and landing; however, if they are in a carseat because of a disability, they can stay in carseat. I did not know the Special Tomato ones were authorised for airlines...interesting. (my only problem seems to be that DD likes to fall asleep on my knee, so if we go through turbulence, she gets woken up when I put her back in her carseat).
I think it must depend on airline and location for the treatment you get - I always fly BA for the US-UK journey (always super-helpful), but recently flew RyanAir to/from France (via Stansted) and they were great - couldn't have been more helpful. I had booked priority boarding, but the lady just had us wait until everyone else was on board, and our seats had been saved for us.
I always request that DD's wheelchair be put in the cabin as she is too heavy to carry to the baggage reclaim, and cannot sit in a regualr wheelchair (ie an airport one, with no seatbelt). They always say they will try their best... but I have a feeling there is an order of priority for cabin closet space - wheelchairs, then buggys for newborns, then buggys for older children - so if you use a buggy rather than a wheelchair, maybe it is worthwhile noting that it is a SN buggy. I even printed off a wheelchair label to hang on DD's chair, as apparently in the US anything labelled "wheelchair" will stay with passenger.( it was just a big wheelchair symbol - sorry can't remember which website I got it from)
have a good trip rebl

We flew 10 hours to Mauritius (where dh's family are from) with dd2 who has SLD, non mobile, non verbal and incontinent. The main problem for us was the toilet provision - toilet cubicle too small for dd who is nearly 10 to use for nappy changing, for some reason dd decided to poo copiously 3 times during the flight!!! Could not change her in plane seat for obvious reasons, BA asked us to use food preparation area with plastic sheeting on floor!!! On one occasion this was when passengers were passing through to collect drinks/snacks etc .... Overall this was not really satisfactory, but not sure what else they could do.

im going to be flying next year me and ds3 both wheelchair users now and been told they will carry the chairs and we both can have extra 23kg for medical equipment etc

We just spent 2 weeks in Portugal and had a great time. Our daughter has ASD, 3 yrs old, was fine on both flights. We flew BA and told the flight attendants about DD, they couldn't have been nicer, on our flight back DD spent about half an hour in the galley helping the flight attendants and charming them with her singing lol!

Did she scream? Yup, both flights she didn't want to put on her seatbelt for landing. She pitched a fit like nothing i'd seen before but the seatbelt went on and eventually (like 10 minutes later) she calmed down. The flight attendants did everything they could to cheer her up and try to distract her, as did we. We had heaps of stickers, smarties etc.

I didn't inform BA in advance about DD because she is HF and we talked to her about the holiday and going on a plane and putting on a seatbelt for 2 months before going so she was aware of what was going to happen. But the staff were amazing and I only have good things to say about BA.

Security at the airport was trickier as you can't bypass at all. They had to search one of our carry on bags as stupid me left suntan lotion in it. It took them almost 10 mins to get to our bag and DD hated waiting and it was crowded and noisy and we couldn't leave the area until they searched the bag. I did ask them to search our bag first because DD had ASD and the noise was really upsetting her but they didn't seem that interesated. On our flight back however they had to do a 'touch search' of me and DD and I told them she had ASD and the woman doing it was brilliant and made it into a game so DD didn't mind.

So, all in all, it went ok, i've had worse trips to Tesco with DD LOL! It was a bit stressful during the strops but you know, she wasn't the only kid screaming and the holiday was so worth it. And she has strops at home too so hey, why not deal with one on holiday lol!

Hi, I wanted to ask. My DD is almost 5. And soon we will have a special needs pushchair. When traveling, do the airlines charge buggy as extra luggage? Or it is free, does not included in luggage allowance? Do I need some kind of letter confirming that it is equivalent to a wheelchair? As my daughter's walking difficulties are not visible(she has neuromuscular without a name yet), but people tend to comment that she's not walking because she's lazy.

I flew alot with DS who had sensory issues and difficult speech.
Unfortunately you just have to strengthen your backbone against others comments....
Here are some things I did
Used a lot of rescue remedy for both of us - It really does work
Lollipops - DS doesn't go wild on sugar - he I think found the sucking calming. I am not wild about lots of sugar - but for me, it was about getting through......
(I actually found airports the hardest - lots of noise, movement, stimulation)
I bought lots (# depending on length of flight - I did quite a few 10 hour+ flights) of little presents and wrapped them.....if you don't want to buy things, hide some small toys - and wrap up little assortments....Things that required assemble, activity like things...so he could unwrap them and then play.
Not found of electronic stuff - but we used to use a leapstar, but now its an iPad....games and movies....
Always travelled with his teddy,stuffed dog and blanket - those were first thing in his seat when we got on plane

I think the big thing, is if you and your partner can remain calm, that will make it easier on whole family

And see if you can organise assistance......had to travel with Mum, with two broken arms (plus kids) last summer and assistence was surprisingly easy to organise and great....we got on the plane first, had plebty of time to settle in...removed alot of stress for everyone

HTH

What brilliant advice from everyone.

I fly with DS1 who has severe autism
you have to get informed of your rights and demand that people do their job. Be persistent, kick up a fuss, complain, threaten with everything under the sun. This is the world of special needs.
People will stare on a plane, it's a closed space and everyone is bored. It's annoying but it's going to happen. I am known to stand up and announce to a full plane that they can stop staring, the show is over, but that I am happy to answer questions. I am terrible like that.
You have to develop a thick skin.

My son has asd spd autism associated learning delays speech delay hypermobility he suffers with glue ears he has lack o understanding lack of danger and I think he has adhd as he can't sit still and all the lads in his dad family have adhd one of my son cousin is on meds for it because he can be violent his dad also has adhd. If you go to the Drs they can give you some meds that calms them down I used some last year as didn't know how he would handle it as we go to America which is 7 hours flight and he's been going there since he was 5 months old. So go to your Drs for some meds.

Love all this advice! I travel with my non-verbal son SLD, Epilepsy, ASD ADHD and my husband who is a complete paraplegic. Usually from Manchester or Leeds. Jet2 have always been brilliant, he has a SN buggy which they happy class as a wheelchair (can call it a child's manual wheelchair) and say although he can climb the steps with assistance they like to know about additional needs to inform the cabin crew and try to make the flight as comfortable as possible for him. We are always offered blankets, sweets and they also come to say hello to him. By making me as his mum more relaxed it makes a world of difference. He loves to rip things and generally make mess and they really don't mind (i tidy up as much as possible). We've had to buy a few beers over the years for flying insight brochures and the odd flying shoe and had a seizure incident going through customs once (stress trigger) but it is all worth it and for as long and i can handle it will keep flying. Have a lovely time in Greece!

one of the reasons that my son is now being assessed for ASD is that he had a panic attack/ meltdown boarding a flight to Florida last summer, he was so bad that we were unable to get him to go on the flight. I think he had had sensory overload a the airport and had convinced himself that the plane would crash. We did manage to board a flight the next day with the help of phenergan and special assistance through security/ boarding first.

My son was 10 and had flown previously (albeit a few years earlier) with no fear.

We would love to revisit Florida but I am so worried about this happening again. He does have a tendancy to literal thinking. The safety videos are a nightmare - "why would they do it if the plane isn't going to crash". Obviously I don't want this to limit his ability to travel as he loves to.

He is likely to get a DX of Autism in the next couple of weeks. Someone mentioned a calming medicine earlier in the thread, does anyone have experience of anything similar and whether something can be prescribed. Or with dealing with fear generally.