Here's a few more pictures of our time at Disneyland and one of Lily at Madame Tussuad's - this had just opened in Hollywood and was her favourite part of the trip - it was just perfect for her as it concentrated on current Hollywood stars mostly, rather than historical figures as the London branch does.
- We wrote him a little book in advance - this had lots of positive statements about his behaviour interspersed with info about Disneyland - "I will hold mummy's hand at passport control and baggage claim" "I will stay in the hotel room unless mum or dad is with me" "I will try to stay with mum or dad. If I can't see them I will find a mummy and say 'I'm lost' " (This last one because Noah has no definition of 'lost' he just thinks it's an adventure!)
- We wrapped a little gift, let Noah see it and built up the excitement about it and how he would get it if he stayed in the hotel room when he woke up (our real concern was that he wold get out while we were still sleeping - he did this once in a hotel in Sydney and it was not a good experience!)
- Noah wore a hospital bracelet with Paul's mobile phone number on and a note saying we would pay for calls (as they would have to go through NZ). The bracelet stayed on till the last day although the ink was smudging a bit by then. When Noah somehow removed the bracelet on the last day I wrote on his arm with indelible marker but this wore off in the intense sweaty heat.
- We had some ready prepared "WANTED" posters with a photo of Noah, a sentence saying "Because of my disability I sometimes wander" our flight details, hotel phone number and Paul's cell phone. We gave one to the hotel reception and kept one in my bag and one in Paul's back pack in case we lost him and needed a photo. Paul also had a photo of Noah on his cell phone - we meant to take one each morning to show what clothes he was in each day but forgot.
- We took with us, a sign to stick on the inside of our hotel room door which said "Noah STOP don't go out unless mum or dad is with you" We also had a red cut out outline of a hand which we put by the door handle - this is the symbol they use at Noah's school on things he can't touch.
- We put a chair which would make quite a noise when moved by the door for the first few nights until we were fairly confident that he wouldn't leave
- Most of the time Noah wore a wrist band attached to a wrist band Paul or I wore. He could undo the velcro if he wanted to get away, but he actually quite liked the security this provided.
- Getting a Guest Assistance Pass from Disneyland was great as it meant much less queuing and times when Noah was likely to get bored or over-stimulated and display silly behaviours. Disneyland is very accepting when it comes to special needs and just being in that kind of atmosphere helped
With all this preparation we could relax a bit and only had one occasion when Noah left the room alone which was when he decided to get himself some ice. Noah is actually quite proud of himself for managing to stay safe and I think it has been a little boost to his self esteem.
We're trying to settle back to everyday life here now. Our focus is on Isaac now, as the ENT doctor feels he needs an operation to insert grommets (ear tubes). We are also seriously considering trying to do a tube weaning programme from Austria by email (If we can get the needed support from hospital staff here). The skin around his button is becoming so red, sore and scarred and it impacts our life so much (and Isaac's even more) having a tube fed child. When Hannah phoned us in USA and said she'd had to replace Isaac's button and call the Homecare team to check on it, we began to realise just how many potential issues there are.
We are trying to do the playpicnic the Graz clinic suggests (presenting lots of attractive food for the child to play with and touch without any pressure to eat) and Isaac can make a great deal of mess very quickly!