So, back to the story and it’s April 2008 and we have a trip to Orlando to go on. Obviously, when we booked it some 11 months earlier, we didn’t envisage that we would have to navigate a restrictive diet along with the regressive behaviour of our two year old daughter. It was a real worry thinking how Ellie was going to manage.
I remember doing a lot of planning! Literally, organising food for every eventuality. Hand luggage was full of treats, special sandwiches, plain crisps etc to keep Ellie busy on the flight. We’d gone up to the airport the same day so didn’t have to worry about overnight food before the flight.
Before we went, we did some research looking for specialist stores that sold ‘free from’ food and located a Publix not too far from our appartment, where we stocked up on rice, GF pasta, crisps (potato chips!) and bread.
I don’t remember having any trouble with the flight, Ellie was still a lot quieter than she was before the virus and we kept her busy with comics, tv and food!
The shops in America were a dream come true in comparison to the poor selection we’d been used to at home. I remember it taking so long to find all the products at the store because they didn’t have a ‘Free From’ section like here in the UK but instead stocked it with their counterpart ‘normal’ products – so going around the huge store took forever!
Everyday, we would load up with plenty of food for Ellie – either a GF pasta and tuna dish or a rice, ham and peas dish in our clever little tuberware ‘keep it hot’ lunch pot. If Ellie got hungry in the parks, she would have ice lollies and she even tucked into those huge Turkey legs! Huge packs of ‘potato chips’ were a godsend as well!
There was definitely sensory overload going on in the parks – so much was happening and so many sights and sounds, so there was a lot of moaning and crying from Ellie when she wasn’t coping. Thankfully, we had my Mum and Dad with us to take the heat off a little.
Having to wait more than 10 minutes for a ride was a big issue. Thankfully, we went at a quiet time of year so it wasn’t too bad and we managed to buy a Fast Pass ticket in the Universal parks to get through the queues quicker. On visits since 2008 (and having a diagnosis) we have had a letter from the doctor which has meant we have been able to get Assistance Passes for all the parks – but more about them in future blogs!
Even back in 2008, the parks were very helpful in terms of food for allergies and intolerances. The best experience we had was at The Crystal Palace in Magic Kingdom where you get to meet Winnie the Pooh and his Friends. Once seated, the chef came out to see us and took us around the buffet bars letting us know what things we could give Ellie. She was able to have quite a feast as so much of it was fresh and not processed junk. It was Ellie’s third birthday and they made a real fuss of her, even giving her a special chocolate brownie cake and some soya ice cream which she absolutely loved. We were all beaming and welling up at Ellie really enjoying her food.
At the end of the meal the chef came out to us with a bag full of different flours and cake mixes for us to take away. It was such a kind jesture and it really was a highlight of the holiday.
That afternoon we got to meet Mickey Mouse. There was a long-ish queue for that experience which resulted in another meltdown (and that was just me!). It’s the anticipation of what is going to happen which builds up and results in a meltdown. Despite the wobble, once we’d got into the see Mickey & Minnie, it really was magical.
Ellie had just turned three and at this point we were only a few months into this journey. Ellie wasn’t diagnosed with anything and we had yet to see a doctor who knew what was going on.
I remember whilst we were away, we all thought that Ellie had come such a long way since those dark days back in January and that she was really coming back to us. It wasn’t until a few years later that we watched the holiday videos again and realised she was far from coming back to us. There was a lot of smiling and pointing and a few words tagged together, but the chat Ellie once had was still a long way off. I can assure you however, now at age 12, the speech is most definitely back…but that’s for another day!
Until next time,
Love & hugs xxx
Tales of a Mother's Daughter 