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Flying With A Child Who Has Cp

GuestGuest Posts: 1,968Member
edited November 2014 in Parents and carers
Hi, im new to this site, but i was just wondering if anyone can help me, I have a 4yr old son with quadraplegic cp, he cannot sit, walk or crawl, We have a holiday booked for the end of june and firstly i was told he could sit on my knee as he is disabled,then i was told because hes 4 he is to old to do this, then i was told he could go on the plane with a carseat, but then i was told from the airline by another call centre advisor thats because hes over 36 mths i could'nt do this either, do's anybody know what i can do as another call operator told me i would just have to put him on a normal seat, how can i possibly do this when he has no balance or head control, has anyone had this problem, if so Heeeeeeeelp! lisa x

Replies

  • GuestGuest Posts: 1,968Member
    Hi, im new to this site, but i was just wondering if anyone can help me, I have a 4yr old son with quadraplegic cp, he cannot sit, walk or crawl, We have a holiday booked for the end of june and firstly i was told he could sit on my knee as he is disabled,then i was told because hes 4 he is to old to do this, then i was told he could go on the plane with a carseat, but then i was told from the airline by another call centre advisor thats because hes over 36 mths i could'nt do this either, do's anybody know what i can do as another call operator told me i would just have to put him on a normal seat, how can i possibly do this when he has no balance or head control, has anyone had this problem, if so Heeeeeeeelp! lisa x
  • glitterybglitteryb Posts: 5Member
    my son is very similar, quad cp, cant sit, walk, crawl, no head control etc.

    when he was 2 we took him to spain, we flew with first choice, before we booked we phoned the airline, spoke to the people in the shop, spoke to customer services, emailed etc and were told different things by each of them.

    it was when the security measures were at their highest and one person even told us we wouldnt be able to take his buggy right up to the gate and would have to carry him, and they werent sure if i would be able to take his own car seat.

    i explained what the situation was and that although it was an ordinary buggy he was severely disabled and would not be able to walk/be carried for any length of time and wouldnt be able to sit unsupported.

    the best advice i got was to speak to the airport and the flight crew on the day, which i did and i must say they couldnt have been more helpful!

    the girls on the check in desk were lovely and said that one of them would be at the departure gate and make sure everything went smoothly, he stayed in his buggy, we were waved through a huge queue at the entrance to the departure lounge and assisted to go through the metal detector, we boarded last rather than first so everyone was in their seats and we wouldnt be holding anyone up, the ground crew carried his buggy up the steps with him in it and the flight crew fitted his car seat so it was all ready for him.
    it was equally as good both in spain and on the return journey.

    i asked the flight crew what we would do when he was 3 and couldnt use his car seat anymore and they said customer services would probably, if asked, make a special exception for him and let him use it.

    the only problem with this is that his car seat was in the reclined position and was touching the seat in front, at 2 he spent the whole flight with his legs crossed as there was nowhere else for them to go but i dont think this would be practical as he get older/longer.

    they wouldnt give you an extra legroom seat as these are usually at the emergency exits and can only be used by able bodied people so the only alternative is to purchase a first class seat if there are any on the flight.

    they said they could alternatively use cushions to prop him up but this wouldnt be enough for him so i have been thinking of one of those large cushion things with the beads in that you take the air out of and it moulds firm to the shape of him, like versa form plus or leckey sleepform which i have tried, unsuccessfully as a sleep system but would be ideal for this purpose. no idea how much these things cost but im sure they could be used in any number of situations.

    the other option is if the airline has a special seat, virgin have just introduced a new support seat called "the travel chair" and they as well as monarch use the burnett body support, although i think this is for bigger people and probably wouldnt suit as i dont think it caters if you have no head control.

    ooh i have gone on a bit, hope this helps
  • GuestGuest Posts: 1,968Member

    Thank you for your reply, i have been given some info on a crelling harness they are supposed to be brill for this sort of thing and most airlines accept them x
  • devotednannydevotednanny Posts: 1Member Whisperer
    Hi
    I have quite a bit of info about flying with a disabled child. I share my info with scope, but I did not email to them as I said I would, So thank you for prompting me into getting this sorted.
    I fly to spain quite a bit and Easyjet have been great. They have a dedicated person at their head office who deals with special needs. They recommended the crelling harness to us, we have purchased it, but not used it yet. Ryranair from my experience are not very helpful at all.
    Almost all of the big airlines such as Virgin, Monarch and BA have special seats that will provide for you, but you must get in touch with them first.
    At the end of the day it is the CAA can give you advice on seating a child who is a paying passenger, but is not able to sit alone for take off and landing. My grandson is 4 yrs but only weighs 23lbs we have an email from CAA stating that as our child only weighs that of a much younger child we are able to have him on our lap . We have however bought him the crelling harness for his next trip.
    I must point out that each airline has to answer to country of origin CAA.
    i.e Ryanair - CAA Ireland
  • GuestGuest Posts: 1,968Member
    Hi to you all,.

    I was just going onto the website to put on help with flying!! funny as this topic is already here!! I just flew to spain with Easyjet and what a nightmare!!

    I must admit I only flew to America in April when Kai was just under 1 so I assumed it would be fine for him to sit on my lap.

    But we got onto Easyjet and was told by law he can not sit on my lap. Staff were very rude and unhelpful!! My husband in the end got to speak to the pilot and explained surely health and safety comes before Law. Kai is unable to sit on his own.

    So on the way back we took our car seat on. Just about let us take that on as said not the right size. After the flight being delayed an hour anyway they then started querying if we had paid for his seat!!

    I was fuming by this time, as he is 2 so you have to pay!!! They held the flight up to check and you can imagine everyone else on the plane is wondering what is going on, very embrassing.

    I fly alot to spain so am worried what we do in the future. I can not beleive these airlines do not cater for disabled children.

    devoted nanny, can you tell me where you get the harness from?? How does it work?? Kai has a bit of head control and trunk but not fully.

    We have booked already to go with Ryanair in October so a bit worried now!!

  • sy03dlssy03dls Posts: 1Member
    Hi
    we are booked to fly to spain with easyjet in August. I was having trouble with their stipulation that a car seat must not be wider than 42cm - Britax said no such seat exists for a child of 2 and 6 months weighing 13 kilos. I found out about new European regulations callling on Airlines to make their services more accessible like the DDA legislation. It apparently comes into force on 28th July 2008. I quoted this to easyjet and got them to agree to a 43cm seat by email so I can produce this at the check in.

    I don't know if this is any help? Try quoting this to Ryanair.

    My worry is now that we,ll have trouble taking the buggy to the Gate. She's tooo heavey to carry!
  • GuestGuest Posts: 1,968Member
    Hi crelling harnesses have their own website. Just type in crelling harness and it will come up, they are based in cleveleys near blackpool lancashire, they are a family based company, ours cost
  • GuestGuest Posts: 1,968Member
    Hi - I am flying to Scotland on Easyjet with twins next month, both of whom have quad cp. I'd love to know how to contact the person who works with special needs at head office - I've spent a lot of time already on the phone to their call centres where nobody appears to have tackled this type of situation before. I was thinking of buying 2 Britax Freeway car seats as these appear to be airline friendly in general, but I'm a bit worried having read this thread now about leg room as my twins are both tall and wouldn't be able to sit cross legged. Also, how did you manage to get an email agreeing to a 43 cm car seat, and which car seat was this? Does anyone know the definitive situation regarding the age of children allowed to sit in car seats? My twins are 4 but weigh the same as their 11 month old little brother. Regarding the Crelling Harness, does anyone know how much this costs, and whether it comes with a head support? Thanks.
  • GuestGuest Posts: 1,968Member
    sueormy54
    hi, my son & daughter-in-law have just touched down in spain with their 4 year old son who has severe spastic quad cp. he has neither trunk or head control. they purchased a crelling harness and he sat in it- in his own seat - on the plane for take off & landing, my sons verdict -BRILLIANT ! it has saved them at lot of hassle as it kept my grandson upright for the length of time needed- this may not work for everyone but it worked for them. anything is worth a try if airlines are unco-operative
  • kf7naer4kf7naer4 Posts: 1Member
    Hi, I saw you mentioned your unsucessful attempt to use the Leckey sleepform as a sleep system. I am considering purchasing one now. Can you share your experience with me. My son is 13 and with spastic quad. We want to stablize his hips and avoid further dislocation. Any advice is welcome. Thanks, Debby
  • GuestGuest Posts: 1,968Member
    For those of you who used the Crelling harness for 4 year olds - did you also need a booster seat (as used in a car) to raise them up to the correct height ? I am thinking of getting the harness as it would also be suitable for coach journeys etc but am unsure about whether my daughter (5 but size of a 4 year old) would need a booster seat in addition for the height problem. Would appreciate knowing. Thanks.
  • glitterybglitteryb Posts: 5Member
    [quote name='kf7naer4' date='Aug 19 2008, 03:54 PM' post='24439']
    Hi, I saw you mentioned your unsucessful attempt to use the Leckey sleepform as a sleep system. Debby
    [/quote]


    Sorry Debby, only just saw this, the Leckey Sleepform is a good system, probably one of the better ones in my opinion, i really liked the idea of it moulding around his body, its just that my son has Dystonic cp and didnt seem to like any sleep system to be fair, if he felt "fixed" in place his dystonic spasms would kick in and he would fight against them and get very upset, he even managed to spasm his way out of the JCM Moonlite, which is very similar to the Symmetrikit Symmetrisleep if you've seen that one, it has brackets which you adjust to suit and then a mattress goes over the top. The only one we havent tried so far is the Jenx Dreama where the brackets are part of the mattress, but i dont think that will suit my son either to be honest!
  • GuestGuest Posts: 1,968Member
    hi my 4 year old grandson used the crelling harness on the flight to spain. He is small for his age and no they didn't have to use a booster seat with it. You fasten the harness round the back of the plane seat, as I said it kept him upright for the required time and he coped well with it.
  • grazzagrazza Posts: 2Member
    Hi Lisa,
    We have an AirChair, Burnett Body Support and Crelling Harness you can try at your convenience to see which works best for you - we call it try b4 u fly! Some UK airlines have their own stock of some of these chairs and we can advise. MERU can hire out our AirChair depending on availability, and we are currently engaged in designing and providing a new version, available in 2012. Please do get in touch if we can help.
    Graham
  • LynseySLynseyS Posts: 1Member
    Gosh I know this thread was started some time ago but we are in a similar situation now. We are off to Florida in May and having a nightmare with finding suitable seating. My son has QCP and is 9. However he is a very BIG 9 year old and too big for the special seat supplied by Virgin. We have been told that they have an adult adaption that will mould around him and this can be used with a crelling harness (which thank fully we do have) but I have been trying to find out where we can test it out (will feel much happier knowing we won't get to the flight and have nightmares). GRAZZA - you mentioned a 'try before you fly' system, but couldn't see any link on your post - can anyone HELP???

    Lynsey (worried!)
  • grazzagrazza Posts: 2Member
    Hi Lynsey,
    tryb4ufly is a charitable service run by Queen Elizabeth's Foundation Mobility Centre in Surrey. You can try out the range of different supports in an aircraft fuselage to see which one works best for your son. The new version of the TravelChair shoudl accomodate a slightly larger child than the old version - and may well be worth a try. Good luck!
    G
  • muze7muze7 Posts: 1Member
    Hi all,
    I have no experience flying with disabled children, but I saw these posts and thought, maybe my experience with flying helps someone.

    We have a seat that has a very tall shell, and is very comfortable for most children as it has a wide base too. I think it goes up to 6 years, and it also has a five point harness.

    The seat is one of the safest on the market. But it can also be used on many airplanes, including Easyet. It is the Britax Two way Elite and the base (as measured by me) is less than 42cm!!

    This means I have been able to fly with it on Easyjet, on Flybe and on KLM. Easyjet about 10 times now, it fits on both types of Aircraft they use.

    Sometimes the people at check in get worried when they see it, but when you state it conforms to all easyjet regulations they usually relent (sometimes they have to call their manager first; the regulations are less than 42cm, and five point harness). At boarding it was never a problem (our plane staff was happy to hear that we are able to fit it ourselves. They only check once you are done that it sits securely).

    This seat is the one that incarsafety centre sells. It is also the one they adapt for SPICA children.

    The + and - points about taking it onboard:

    The TWE fits well between the seats on both Easyjet and KLM, there is no width problem as it is quite narrow at the base. The only thing is the seatbelt on Easyjet is only just long enough. You need to push the seat into the back and have it sit upright, then you can just manage to click the seatbelt buckles together. Once that is done, the rest is easy. (You are not allowed to use a seatbelt extender for this, according to crew, so you have to fiddle a bit).

    But if your child needs you, this seat is maybe not a good idea. I would definitely need to have another adult at hand to hold the child whilst fitting the seat.

    To transport it on the airport, what I do is I take the two tetherings straps of the TWE and attach them to the seat through the back holes, then you can carry the TWE on top of a handluggage suitcase with wheels by looping it around the handles. That makes it much easier to walk around the airport.

    Hope this might help someone.

  • BrunoSemogBrunoSemog Posts: 1Member
    Hello,

    I've read through most of the posts regarding this topic in search for help as many of you.
    I have a son with spastic diplegia cp, and I want to fly him over from Portugal. Here is my problem - He is 16 and he is a big boy now. It is not likely that we will be allowed to have him sitting in his chair, so the only solution is to find a harness or a similar solution. He needs a 5 point seat belt or a harness, but it's so hard to find any information on this for them when they are older... Can someone help us? Please. Thank you!
  • TripletmomTripletmom Posts: 37Member
    Hi, Sorry this is a rushed message. I haven't had chance to look at all the messages in this topic. So apologies if this has been mentioned already. Try (cares harnesses) for about
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