Rachandgarry
DIS Veteran
- Joined
- Feb 13, 2011
- Messages
- 540
Hey there, hi there, ho there its a Disney kind of day.... here comes my first ever pre-trip report! This is page 2.
Link to Page 1
Link to Page3
The Who (not the band, obviously hehe)
Me: Rachel, 36. Fave attraction: Stitch Live, fave character: Sulley.
DH: Garry, 36. Fave attraction: will ask him tonight, but I think it will be Big Thunder Mountain, fave character: probably something obvious like Mickey Mouse lol!
DS: Matthew, 5 and 1/2. Has Autism, Learning Disabilities and Sensory Processing Disorder. Fave attraction: Its a small world. Fave character: Winnie the Pooh
The When: February 9th - 12th 2012
The Where: Sequoia Lodge
The How: By car from Bristol, on Eurotunnel, in one go.
The What: A last minute 3 night stay to surprise our DS who is absolutely desperate to go back! Takes after me I think!
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
This is as good a place as any to tell you a little about DS's special needs, which will hopefully explain why we have to be so careful to avoid gift shops!! It probably looks like I'm spoiling him with all the gifts etc, but he is not bratty at all and he doesn't think the way mainstream children think, so I sometimes have to inject magic in other ways. Matthew has Autism. He has the Kanner or Classic variety, which (mostly) comes with little or no speech and communication. He does talk a little, but its hard to understand and it is generally only learnt phrases, rather than a constructed sentence. He doesn't understand questions - like if I said "are your shoes comfortable" he wouldn't understand me; he would hear the word shoes and probably take them off, assuming that is what I had said. Its difficult, and it is sad to see him hampered by the lack of communication. He can't be reasoned with, because he doesn't understand what you are saying. When we were at DLP last year, the first character he saw was Pluto and he ran up and cuddled him - it was so adorable. Pluto, very kindly picked Matthew up and cuddled him..... the downside is that from then on he expected every character to do it and because he can't understand language, we haven't been able to make him realise that it won't always happen like that. He tried to climb up the characters to make them cuddle him, which is a nightmare. His lack of language is very useful in one way though, he doesn't talk to the characters - so doesn't even think anything of it that they don't talk to him!
The "pick him up - how sweet - oh no!" incident:
so cute though
He can't see things from someone else's point of view, and has no sense of danger. If he sees something he wants, he will go straight for it - whether it is in a shop, or another child is playing with it. When we try to stop him, he throws a tantrum - and it is no ordinary tantrum. His Autism has given him incredible strength - of mind and of body. I can't restrain him now, he's too big and too strong. My DH can - just! He has severe learning disabilities and attends a special school.
Matthew also has Sensory Processing Disorder, which is where the signals received by his brain, from his senses, are received incorrectly. Like he will touch something hot but not realise it is hot. He'll climb very high on something but his brain doesn't receive the message that the body is high - so Matthew doesn't realise it. He will just step off something 20 ft in the air as if there is no distance at all. He doesn't receive correct feedback about how hard or soft something is if it touches him, or when he touches something else - so he doesn't feel pain properly - he dislocated his elbow and didn't even notice
. If he wants something, and there is resistance (from another child, or something is tied to a wall etc) he just keeps pulling because he doesn't feel the intensity. At the clinic a few months ago, he wanted to play with a toy outside the room we were in with the sensory therapist - and the door was locked. He kept pulling and my DH tried to pull him away but couldn't. After about 10 minutes you'd think he'd give up and just sulk - but no, he just pulled harder - and rather than the lock on the door breaking, the whole door frame came away from the wall - he broke it clean off. It can be a completely nightmare, because he causes a danger to himself and those around him if he is not supervised really carefully.
With this in mind, going in to crowded gift shops where he just wants everything is a total no-no. He just pulls everything off the shelf and starts taking it out of boxes etc - to stop him is really hard, and he ends up having a wriggly fit on the floor - where there just isn't room to do that. We pick him up and take him out of the shop but he will scream and cry for an hour or more and nothing will distract him.
Last year, before we'd really experienced how traumatic the park shops were going to be, we let him go in to the toy shop on Main St, and I stayed outside ready to take a photo of him as he came out, hopefully beaming with delight about his new purchase.... this is what actually happened, and as you can see he has no toy - he'd behaved so badly that he'd lost his priviledge.
He also can't wait. He doesn't understand it - he can't tell when it is 'waiting' and when it 'is not happening' so he just assumes as soon as something doesn't happen right away, that it isn't going to happen at all - and that is what he reacts to. Imagine going in to the park and then thinking that you weren't going to be allowed on any ride at all. You'd be devastated.
He is also still in nappies, with no sign of realising that he needs changing etc. He doesn't sleep full nights, and doesn't eat many foods and is spoon fed still.
We can't do proper sit down restaurants because he won't sit still long enough and just wants to get up and run off. He also won't eat anything from restaurants (this is a child who refuses to eat pizza, chips, chicken nuggets, beefburgers, cake, any vegetable, any fruit - basically anything other than food I've made or Heinz spaghetti in a can, he'll eat any variety of that though; hoops, numbers, spaghetti and sausages lol). We have tried to change this, but he would literally starve himself as his brain doesn't receive the message that he is hungry. Food for Matthew is a conscious decision - he won't just eat something because he is hungry. If he 'knows' he likes it he will eat it, but if not then he won't. I hate that we can't eat in places like Walt's, Annette's and the Rainforest Cafe anymore . We have to heat his spaghetti up in microwave at the hotel and put it in a food flask, then take it in to the park with us and feed him while we have something really quick like Bella Notte or Colonel Hathi's.
It isn't his fault, per se, this is part of the Autistic way his brain is wired. It is also not our fault - it isn't the result of bad parenting or neglect. We do everything we can to help him cope and find his way in the world but we don't accept bad behaviour, violence or rudeness and we make him say please, thank you and sorry where appropriate. I hate obnoxious rude pushy children, and never ever let Matthew behave this way. He tries, of course, because he doesn't know its wrong - but we don't let him. Waiting, sharing and limitations are, however, part of life and he has to realise that. It may take us a long while but hopefully one day we will get through to him, and in the meanwhile we just have to nurture him and make sure we give lots of positive praise and reinforcement of his good behaviour.
Because of Matthew's disabilities, which, although you can't see any of them when you look at him, are considered severe, he has a blue badge. This also means that at Disney parks we are able to have an Easy Access card, which allows Matthew and 1 or 2 carers to go on rides with a shorter wait than otherwise would be. In some rides, you just join the fast pass queue, and on others you go to the exit and the CM gets you on the ride when you can. People often look at us as if to say "well what the hell??" and I can completely understand that - but Matthew panics after 1 - 2 minutes waiting, if we had to queue normally we'd never be able to go. When there is a short line, we do queue and make him wait - if he never has to do it he'll never get used to doing it. Its about finding the compromise where we can help give him tolerance, and making a vacation in to boot camp for him!
I've probably made him seem like a complete monster and he isn't. Everyone who meets him absolutely adores him - he's sweet, kind, helpful and so affectionate - but that is because of how well we manage him. Hence why the minutia planning is important, so we get everything right and limit the opportunities for us to have a meltdown. We want to see him have a wonderful holiday, but we also want to minimise the negative behaviour for our sanity, and of those around us. I used to worry that we were making a rod for our own back, or just 'giving him what he wants/demands' but I don't think we are - if anything we are harder on him than most are, because we are so aware of how his behaviour can look!
Enough of talking about this, I'm even boring myself lol. I promise the rest of the pre-trip report will be much more fun and exciting, but I just wanted to tell you about his special needs so I don't look like I'm just pandering to a precocious child!
Right, next page will be all about the in-room decoration I have planned
Link to Page 1
Link to Page3
The Who (not the band, obviously hehe)
Me: Rachel, 36. Fave attraction: Stitch Live, fave character: Sulley.
DH: Garry, 36. Fave attraction: will ask him tonight, but I think it will be Big Thunder Mountain, fave character: probably something obvious like Mickey Mouse lol!
DS: Matthew, 5 and 1/2. Has Autism, Learning Disabilities and Sensory Processing Disorder. Fave attraction: Its a small world. Fave character: Winnie the Pooh
The When: February 9th - 12th 2012
The Where: Sequoia Lodge
The How: By car from Bristol, on Eurotunnel, in one go.
The What: A last minute 3 night stay to surprise our DS who is absolutely desperate to go back! Takes after me I think!
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
This is as good a place as any to tell you a little about DS's special needs, which will hopefully explain why we have to be so careful to avoid gift shops!! It probably looks like I'm spoiling him with all the gifts etc, but he is not bratty at all and he doesn't think the way mainstream children think, so I sometimes have to inject magic in other ways. Matthew has Autism. He has the Kanner or Classic variety, which (mostly) comes with little or no speech and communication. He does talk a little, but its hard to understand and it is generally only learnt phrases, rather than a constructed sentence. He doesn't understand questions - like if I said "are your shoes comfortable" he wouldn't understand me; he would hear the word shoes and probably take them off, assuming that is what I had said. Its difficult, and it is sad to see him hampered by the lack of communication. He can't be reasoned with, because he doesn't understand what you are saying. When we were at DLP last year, the first character he saw was Pluto and he ran up and cuddled him - it was so adorable. Pluto, very kindly picked Matthew up and cuddled him..... the downside is that from then on he expected every character to do it and because he can't understand language, we haven't been able to make him realise that it won't always happen like that. He tried to climb up the characters to make them cuddle him, which is a nightmare. His lack of language is very useful in one way though, he doesn't talk to the characters - so doesn't even think anything of it that they don't talk to him!
The "pick him up - how sweet - oh no!" incident:
so cute though
He can't see things from someone else's point of view, and has no sense of danger. If he sees something he wants, he will go straight for it - whether it is in a shop, or another child is playing with it. When we try to stop him, he throws a tantrum - and it is no ordinary tantrum. His Autism has given him incredible strength - of mind and of body. I can't restrain him now, he's too big and too strong. My DH can - just! He has severe learning disabilities and attends a special school.
Matthew also has Sensory Processing Disorder, which is where the signals received by his brain, from his senses, are received incorrectly. Like he will touch something hot but not realise it is hot. He'll climb very high on something but his brain doesn't receive the message that the body is high - so Matthew doesn't realise it. He will just step off something 20 ft in the air as if there is no distance at all. He doesn't receive correct feedback about how hard or soft something is if it touches him, or when he touches something else - so he doesn't feel pain properly - he dislocated his elbow and didn't even notice
. If he wants something, and there is resistance (from another child, or something is tied to a wall etc) he just keeps pulling because he doesn't feel the intensity. At the clinic a few months ago, he wanted to play with a toy outside the room we were in with the sensory therapist - and the door was locked. He kept pulling and my DH tried to pull him away but couldn't. After about 10 minutes you'd think he'd give up and just sulk - but no, he just pulled harder - and rather than the lock on the door breaking, the whole door frame came away from the wall - he broke it clean off. It can be a completely nightmare, because he causes a danger to himself and those around him if he is not supervised really carefully. With this in mind, going in to crowded gift shops where he just wants everything is a total no-no. He just pulls everything off the shelf and starts taking it out of boxes etc - to stop him is really hard, and he ends up having a wriggly fit on the floor - where there just isn't room to do that. We pick him up and take him out of the shop but he will scream and cry for an hour or more and nothing will distract him.
Last year, before we'd really experienced how traumatic the park shops were going to be, we let him go in to the toy shop on Main St, and I stayed outside ready to take a photo of him as he came out, hopefully beaming with delight about his new purchase.... this is what actually happened, and as you can see he has no toy - he'd behaved so badly that he'd lost his priviledge.
He also can't wait. He doesn't understand it - he can't tell when it is 'waiting' and when it 'is not happening' so he just assumes as soon as something doesn't happen right away, that it isn't going to happen at all - and that is what he reacts to. Imagine going in to the park and then thinking that you weren't going to be allowed on any ride at all. You'd be devastated.
He is also still in nappies, with no sign of realising that he needs changing etc. He doesn't sleep full nights, and doesn't eat many foods and is spoon fed still.
We can't do proper sit down restaurants because he won't sit still long enough and just wants to get up and run off. He also won't eat anything from restaurants (this is a child who refuses to eat pizza, chips, chicken nuggets, beefburgers, cake, any vegetable, any fruit - basically anything other than food I've made or Heinz spaghetti in a can, he'll eat any variety of that though; hoops, numbers, spaghetti and sausages lol). We have tried to change this, but he would literally starve himself as his brain doesn't receive the message that he is hungry. Food for Matthew is a conscious decision - he won't just eat something because he is hungry. If he 'knows' he likes it he will eat it, but if not then he won't. I hate that we can't eat in places like Walt's, Annette's and the Rainforest Cafe anymore . We have to heat his spaghetti up in microwave at the hotel and put it in a food flask, then take it in to the park with us and feed him while we have something really quick like Bella Notte or Colonel Hathi's.
It isn't his fault, per se, this is part of the Autistic way his brain is wired. It is also not our fault - it isn't the result of bad parenting or neglect. We do everything we can to help him cope and find his way in the world but we don't accept bad behaviour, violence or rudeness and we make him say please, thank you and sorry where appropriate. I hate obnoxious rude pushy children, and never ever let Matthew behave this way. He tries, of course, because he doesn't know its wrong - but we don't let him. Waiting, sharing and limitations are, however, part of life and he has to realise that. It may take us a long while but hopefully one day we will get through to him, and in the meanwhile we just have to nurture him and make sure we give lots of positive praise and reinforcement of his good behaviour.
Because of Matthew's disabilities, which, although you can't see any of them when you look at him, are considered severe, he has a blue badge. This also means that at Disney parks we are able to have an Easy Access card, which allows Matthew and 1 or 2 carers to go on rides with a shorter wait than otherwise would be. In some rides, you just join the fast pass queue, and on others you go to the exit and the CM gets you on the ride when you can. People often look at us as if to say "well what the hell??" and I can completely understand that - but Matthew panics after 1 - 2 minutes waiting, if we had to queue normally we'd never be able to go. When there is a short line, we do queue and make him wait - if he never has to do it he'll never get used to doing it. Its about finding the compromise where we can help give him tolerance, and making a vacation in to boot camp for him!
I've probably made him seem like a complete monster and he isn't. Everyone who meets him absolutely adores him - he's sweet, kind, helpful and so affectionate - but that is because of how well we manage him. Hence why the minutia planning is important, so we get everything right and limit the opportunities for us to have a meltdown. We want to see him have a wonderful holiday, but we also want to minimise the negative behaviour for our sanity, and of those around us. I used to worry that we were making a rod for our own back, or just 'giving him what he wants/demands' but I don't think we are - if anything we are harder on him than most are, because we are so aware of how his behaviour can look!
Enough of talking about this, I'm even boring myself lol. I promise the rest of the pre-trip report will be much more fun and exciting, but I just wanted to tell you about his special needs so I don't look like I'm just pandering to a precocious child!
Right, next page will be all about the in-room decoration I have planned
Thank god we're not the only ones. Sometimes we walk around and everyone is having these calm, beautiful conversations with their children whereas everything we say seems to be "no matthew!" "stand up matthew!" "no hitting, no kicking, no punching, no biting, no screaming, no crying, no alcohol before noon..." (oh wait, that last one is what I get told 
. Thank you, so glad you enjoyed the pics. I can't wait to do the actual TR!! 
