Faith, Trust and BBQ sauce

11/14/15
General

This week me and my wee family went to Disneyland Paris.(my next post will be a general review)

buzz

This wasn’t our first trip but mum also came along with us this time and it was her first trip. This was however our first trip with Elijah since his ASD diagnosis. On our last trip we where heading toward diagnosis and had a fair idea in our own minds what was ahead and obviously Eli has always had ASD but the only difference with diagnosis is access to services and maybe a few more coping techniques and we now also have a better support network of other friends with experience of ASD. This was also our first trip since Bens ASD diagnosis although obviously at 32 his behaviour is not very likely to changed by any learned techniques , his dry humour and ‘interesting’ timing of comments are something that after 10 years I am well used to.

Our flight our was great, but we forgot that it has actually been 21 months since Eli has been on a plane as we have been driving to England the past two years. We hadn’t talked It through with him and his wee face on the plane as we took off almost broke my heart. He was also very concerned at being so high up and got quite frightened several times during the flight. He just needed to be cuddled and reassured and some sticker books helped to distract him. Megan also felt quite sick on the plane but I think the excitement was all a bit much for her and a magazine helped to distract her, we were very thankful its such a short flight – I am very glad we love Disneyland and not Disneyworld!

When we Got to our hotel (Disney’s hotel Cheyenne) where we haven’t stayed before, Eli was so excited by the cowboy type theming and just wanted to run around and play. He also was peering into the shop at all the cuddly toys even though it was 10pm.

Eli was very excited for breakfast the next morning as there was lots of selection but as a typical ASD trait he struggled with making a choice which resulted in him trying everything and then for the following 5 mornings having chocolate toast (what he has everyday at home) and pops.
Drinks also because an issue, Eli drinks water fairly well but he does get bored of it so usually needs some juice in the day, the parks only had water pure orange or fizzy drinks – Eli is pretty sensitive sensory wise with food and drink, he cant stand fizz (which i’m happy about) and orange is too strong, the diluting juice I brought with us was the wrong flavour so he couldn’t drink it. By day two we knew he wasn’t drinking enough with just water but we realised he could manage the apple juice at the hotel and a few other places did it too. It seems like a silly thing to write about but with Eli’s bladder problems and previous surgeries and more surgery to come it is even more important to keep him hydrated. When caring for a child with additional needs little things become big things very quickly.

Eli absolutely loved the characters, he was so excited to meet mickey and Minnie as they where the first ones we saw coming through the studio gates for magic hours. Megan was also super excited and loved the Christmas costumes. Eli spent a lot of time cuddling characters and it was wonderful that they all responded so well. A big tight cuddle makes all the difference to Eli, if fills him with confidence, calms him and reassures him. Eli is a child who tells me and Ben he loves us a lot , he says it so often so we will say it back, even though we tell him every day we love him and we cuddle him and show him we love him with our actions, he needs to hear it often just to check. To have all these characters hug him with so much affection just built up his self esteem bit by bit every time. Im sure he was about 2ft taller when we left than when we arrived.

donald

On our second day Eli had enjoyed meeting the characters so much that character meets where pretty much the task of the day. Previously Ben had been going to get a ticket in the mornings to meet a princess to keep Megan happy but now they had both fallen in love with the princess’s oat the gates the dad race was on! Megan also set us the task of meeting Merida and Eli waited very patiently for this on a bench with his granny. – Megan who is used to using her brothers access pass as she Is always with him got a bit of a shock at having to queue normally, which did her no harm to see and understand. Eli was dressed as Donald on Tuesday and of course we set of to meet Donald, it was lovely that Donald made such a fuss of him and made him so happy, we also later saw Donald on the parade and he ran across the float to see Eli and made a big fuss of him again. Eli struggles with social situations but when u have a huge character jumping about drawing attention to you, you cant help but smile and feel on top of the world.

we realised so quickly that Eli is more comfortable with the characters than people, there’s not the same rules and boundaries. Where some children are very stand offish with their ASD (And Eli is very selective with his interaction) I actually find more often his problem is that he is over friendly. Here that wasn’t and issue he could hug for ten minuets if he wanted to and no1 would say a thing. He was encouraged to dance and wave and be completely free. He sang all day long and skipped along everywhere (until his legs got tired and we hired a buggy every day).

Eli has had a hard few weeks prior to our trip, changes in routine, widening gap between his peers and increased anxiety have lead to more meltdowns, accidents and ticks and just a general sense of shutting off and retreating into his own bubble. School for the first time have seen his struggles which are usually reserved for home. Its so hard to watch your son struggle with general everyday life but not be able to pin point what’s causing it, not know how to help or not actually know of this is just how its going to be for him. To see him so happy and carefree was wonderful but it didn’t come without its challenges.

Throughout the week Eli would shout a regular intervals ‘BARBEQUE SAUCE’ none of us can work out how it started but it became a real habit, as well as shouting it he would mutter it a lot too, there was a link between big crowds and shouting and changing location and shouting and waiting to do something new. This seems to be a new issues there’s been a few words he’s latched onto and repeated (as well as the songs from into the woods), but this was defiantly our most extreme experience. At the start we tried to quieten him down but by the end of the week we went with it and where all shouting it together on rides!

We discovered this week how tricky it Is for Megan to accept her brothers quirks, she’ almost 8 and becoming aware of what other people think, at the start of the holiday she told me nobody was allowed to wear mouse ears its too embarrassing but by Monday she had hers on and was fine. She got quite upset a few times as she wanted as all little girls do, to do her own thing the whole time and sometimes plans have to work around routines that work for Eli (to actually make life easier for us all). when we have this special time together as a family that we get so excited about it easy to forget that four (or five) people are more difficult to please than just one or two.

Eli also celebrated his 6th birthday while we where away. He had happy birthday sang to him by Spiderman, Pluto & goofy, Minnie and mickey and Donald duck, it was such a special day and he dressed as Spiderman for the whole day and was extra excited to meet Spiderman as we had kept it for a surprise. We always say that Eli’s ASD is his superpower and he is our superhero. Megan being the very awesome sister she is dressed as spider girl and really looked out for her brother and was very gracious with him getting so much attention.

spideyasd

This trip was so special, we got time together as a family which we so needed. We got to see all the awesome qualities of our children that sometimes we miss in the busyness of everyday life. We made memories together which are worth more than anything we also realised we still have challenges ahead of us, on Monday morning I need to begin chasing doctors and therapy sessions, Ben goes back to work and Megan has a project to complete for school. Life returns to normal but I know that everytime we head BBQ SAUSE we will think of the magical place we have come to love x Disneyland is home x

Today our hearts and our prayers are with those in France, and with the wonderful cast members in Disneyland hotels choosing to work even when the park is closed and their hearts are hurting to bring magic to others. x

Elijah’s Disney trip was partially funded by Family fund an awesome charity who give grants to children with additional needs. We can’t thank them enough for helping to bring this magic to our family.

http://www.familyfund.org.uk/

Comments are closed.

0 Comments

There are no comments yet.

BritMums