I decided to write this blog whilst planning began for a medical conference we are attending in San Francisco.
Families from across the globe with a child that has Jordans Syndrome, the same as Poppy, will be attending.
We all get to meet each other which I feel is so important in many ways. Parents get to share stories & experiences, siblings get to see other children in their position and our JS child gets to meet others the same as them. As Poppy would put it “With a different brain”.
We also get to meet the medical team that are working on a CURE for this syndrome!! Not something we expect will “cure” Poppy. She is ours just the way she is! (Future children could benefit from this though)
To get to this conference there are a few things we have to do.
Raise some funds to help the charity get us all there! (I will blog about that too once our events are happening)
Physically get ourselves to San Francisco! A scary thought for a lot of families. Especially those on the long flights from Europe or further.
We have done the transatlantic flights with Poppy and our other 2 kids 6 times now. The first time was terrifying. Actually every time is terrifying. You never know what to expect from any child but it’s particulary scary & stressful with a Special needs child.
Here are a few tips for pre, during & post flight:
- Before flight, Prepare, prepare & prepare!! I know a lot of our children don’t understand the concept of time but advance warning is needed about something as big as a flight. Why we are going. Where we are going. Who is going. Fun activities when we get to destination etc
- Call the airport ahead of time to see what services they provide for special needs kids. Most usher children through security etc. Gatwick gave Poppy a special lanyard so staff all knew she would need to be sped along, not left in big queues!
- Call airlines to let them know about your child. We always ask them which seats they recommend for a quiet journey – away from engines, bathrooms etc (Many book your seats for free) We also ask them to allow Poppy to carry her weighted blanket onboard – we’ve always been allowed.
- Be very careful about what you choose to pack in the cabin bag. Things you know your child loves. We have used tiny pots of playdoh, squishy stress balls, stretchy figures, flash cards and obviously the tablet! Really think about what your child will do with the objects in their bag. For example Poppy, if given crayons may colour for a while but then she’ll move onto breaking the crayons into tiny pieces!
- Snacks, pack more snacks than you think or want to be needed. It’s a great way to pass time or bribe – I mean we’ve all been there offering a pack of raisins if it means they’ll be quiet for 2 minutes.
- If using a tablet always pack a charger or battery pack! Also not all planes have Wi-fi so download some content for them to watch and games that don’t rely on wi-fi. I’ve even looked up what entertainment is on board to ensure I don’t duplicate it.
- Headphones will need packing too. Poppy likes to wear ear defenders (Like builders wear!) but then she wouldn’t hear her tablet so good noise cancelling headphones are a necessity
- Check in on line where possible to avoid queues
- At the airport we always get a trolley for bags so 1 of us can have a hand on Poppy. Airports are busy and loud we don’t need her being distraced and stopping or wandering
- Explain where the hold baggage is going
- Use express, special assistance or family lanes at security
- We generally eat at the airport to pass a bit of time and ensure no one is ‘hangry’ getting on the flight
- Find either a quiet area or a kids play area where its ok for the kids to run & climb. Get rid of all excess energy
- Buy plenty of water, dehydrated kids are no fun
- Regular toilet breaks to try and avoid squeezing into the tiny plane bathroom
- Recharge any tablets
- Most airlines offer priority boarding for special assistance passengers. We never take it. We actually keep our kids running until last minute and then board. Saves the sitting on the plane with people coming & going for 40 minutes or so. We sit, we taxi, we fly!
- During the flight let child choose seat
- Offer drinks and sweets to suck during take off. Often I can see Poppy has sore ears from the pressure change but she doesn’t communicate that with us
- We try to keep Poppys seatbelt on where possible as she doesn’t take well to having it back on for turbulence or landing. Easier just to leave it on whole flight.
- Put childs belongings where they can easily access them (After take off)
- When they want to use the bathroom use it as an opportunity to also take a little walk & stretch legs
- Sleep. Well we have had flights where Poppy will drift off of her own accord and we’ve had them where she fights it until we land! I would say from experience, trying to force it can actually cause more issues than letting them sit & be tired. You know your own child
- If for any reason your child does have a tantrum or meltdown try to deal with it the same way you would at home. Try to keep calm & remember the plane is very noisy. In your head everyone can hear but in reality its probably 1 or 2 rows max. We have spoken to people around us during such occassions – explained & apologised. Told them we will calm Poppy as soon as we can. This has always been a positive experience and I feel being open with fellow travellers takes away that image of a ‘naughty child’
- We show Poppy the map so she can track where we are and see the flight is progressing
- Use the bathroom before seatbelts are required for landing. You could be 30 minutes or longer from descent to disembarking which is a long time to a child needing the bathroom!
- When it comes to landing pre warn that we do not get off straight away. Poppy really struggles with this she wants to be off the second the wheels touch ground
- Again offer drinks or something to suck for landing and the change in pressure
- At destination airport disembark positive and happy to show your child you’re there, on holiday!
- Again find the special assistance, express or family lanes for passport control. We have been in the general queue before with Poppy crying through exhaustion or needing the bathroom and have approached staff for support. A simple explanation of your circumstnaces and they are happy to help speed up the process
- Grab a trolley asap for bags! You know by now you’ll be carrying all the cabin baggage & trying to hold onto children
- Be sure kids know the risk of being near the luggage belts
- Patience, I am admittedly the worst for this, I often don’t sleep on flights, I get stressed easily travelling and don’t want to deal with crying children on arrival but step back and think about things from their perspective.
- Know where you are heading & how once bags have been retrieved. Look at map of arrival airport for taxis, public transport or hire car locations
We all know our kids can suprise, both in a positive or negative way. I’ve been told many times to expect the worse and hope for the best. Poppy has had both good & bad experiences on flights but so have our other 2 children. Anyone who has travelled with a typical toddler will say the same thing. Concentrate on the end goal, the reason for the flight. Be prepared, be positive and be loving.