Lgw lanyard and Autistic child and normal life after a holiday

TC Devon · 29 Aug 18, 10:04 PM

We returned yesterday and my autistic daughter (7) has cried on and off for days (even when on holiday about going home) She misses the villa, she misses Disney and universal. She says Our house feels wrong, she feels wrong. She won’t look at photos or souviners she bought because they make her feel sad. She’s bursting into tears all the time. She is nt great with change but she’s talking non stop about needing to go back. She wants to go back immediately. We just can’t afford to return for at least three years, to be honest she struggled when we were out there so we had some very stressful days. She seems to have forgotten that though. Although she does sometimes live in a bubble! She wants everything to be exactly the same when we do return, it won’t be as next time our inlaws are nt coming. I told her this and it has caused even more tears. She wants the same villa, same car. Everything the same.
How do I help her. She was only diagnosed at Xmas so I feel I’m guessing how to parent her and do it properly.
As an aside LGW were appalling with recognising and supporting her- even with lanyard. Passport control on our return was shocking, huge line, she had a sat down hands over ears rocking shut down once we got to the front- no one helped or acknowledged us. MCO were brilliant. Amazing help.

Tillyjcm · 31 Aug 18, 08:27 AM

Hi, my Dd, 14 was diagnosed in January (after a 3 year wait) and we are still learning how she sees the world. CAMHS have been useless from the outset and when she was diagnosed we were given a list of websites to google and discharged. She is still under Paediatrics as she has other health issues and they put us on a waiting list for a Parents course (the wait is over 1 year!).

During our wait for diagnosis we saw a locum Child Psychologist who was fantastic and have found out he does private 1 on 1 sessions so we are going to see him. He was brilliant at explaining how different things effect Dd and how we can help her so now we have a diagnosis we have more questions to ask.

I feel for you with the meltdowns, we had quite a few last trip and they can be very difficult to deal with. For instance, Dd would decide to refuse to get ready when we had a dining reservation and I’d be panicking about being late. It’s like she gets so excited about something that she then shuts down and can’t cope.

She is also the same with wanting things to be exactly like they were before and needing to know details about everything in advance, which although you can do your best to address this it makes things more difficult if plans change (like the fast pass ride going down when you’re due to ride it).

Give her a few days, I’m sure the jet-lag will be affecting her, and hopefully she will start to be more happy to talk about her holiday and all the new and exciting things she did.

Hugs to you, it’s a hard job when you feel helpless and unsure of yourself, but she has you who will always do what you can to make her life happy so take heart. Xx

Tinkerbell · 31 Aug 18, 11:08 AM

Originally Posted by TC Devon

As an aside LGW were appalling with recognising and supporting her- even with lanyard. Passport control on our return was shocking, huge line, she had a sat down hands over ears rocking shut down once we got to the front- no one helped or acknowledged us. MCO were brilliant. Amazing help.

this is awful. Maybe, when you have time, am email explaining what happened. LGW are pushing disability services, they should be made aware that the message has not got through to all staff

.

Doowop · 31 Aug 18, 11:27 AM

Hi

My daughter is 10 and as yet undiagnosed, we’ve seen a consultant clinical psychologist who said she felt dd is autistic and has referred us to a neuro developemental team who, if we’re lucky, may see us around this time next year.

My daughter cries at leaving any holiday and I think that she’s had such a great time that it’s hard to leave, she does calm down pretty quickly once the jet lag has passed.

With the planning of the next trip, I always let her help and choose things which might be good/different to try out she does accept this but the downside is that she puts herself in her bubble at the time of doing them, she’s happy to meet characters and get autographs but she can’t hug them or speak to them as we hadn’t told her to! Couple of weeks ago at DLP, the look of horror on her face as goofy picked her up, threw her over his shoulder and carried her into the meet with me runnin along behind trying to hold her hand would have made a great photo 😂 again a quick ‘wow wasn’t that great now let’s get our pictures and autographs’ moved her past it and she did as i’d said.

It’s not easy and a lot of the time I am telling her what to do or distractions from things that could be a meltdown. She also has a very strong bubble and as long as she is holding our hands and we dodge people for her she is quite happy.

How about trying art therapy? Ask you daughter to draw or paint her favourite times and then maybe suggest different things for next time, also YouTube is great for helping with how things might change, good luck x

DonnaD · 31 Aug 18, 11:33 AM

Originally Posted by Tillyjcm

Hi, my Dd, 14 was diagnosed in January (after a 3 year wait) and we are still learning how she sees the world. CAMHS have been useless from the outset and when she was diagnosed we were given a list of websites to google and discharged. She is still under Paediatrics as she has other health issues and they put us on a waiting list for a Parents course (the wait is over 1 year!).

During our wait for diagnosis we saw a locum Child Psychologist who was fantastic and have found out he does private 1 on 1 sessions so we are going to see him. He was brilliant at explaining how different things effect Dd and how we can help her so now we have a diagnosis we have more questions to ask.

I feel for you with the meltdowns, we had quite a few last trip and they can be very difficult to deal with. For instance, Dd would decide to refuse to get ready when we had a dining reservation and I’d be panicking about being late. It’s like she gets so excited about something that she then shuts down and can’t cope.

She is also the same with wanting things to be exactly like they were before and needing to know details about everything in advance, which although you can do your best to address this it makes things more difficult if plans change (like the fast pass ride going down when you’re due to ride it).

Give her a few days, I’m sure the jet-lag will be affecting her, and hopefully she will start to be more happy to talk about her holiday and all the new and exciting things she did.

Hugs to you, it’s a hard job when you feel helpless and unsure of yourself, but she has you who will always do what you can to make her life happy so take heart. Xx

My DD only got diagnosed at 15 after our move to the US. As you said CAHMS were hopeless. Here I repeatedly heard "how can she be autistic if she hasn't been diagnosed by 14". Her lovely, experienced pediatrician (no GPs here) said she had never had a patient diagnosed so late. She went to such a tiny primary school that was so good at looking after her that she managed pretty well until the transition to secondary. It can be such a hard time for girls when they start getting catty with each other.

A diagnosis has helped my daughter understand herself better and helped how others see her, hopefully you will both find the same.

Tillyjcm · 31 Aug 18, 01:06 PM

Originally Posted by DonnaD

My DD only got diagnosed at 15 after our move to the US. As you said CAHMS were hopeless. Here I repeatedly heard "how can she be autistic if she hasn't been diagnosed by 14". Her lovely, experienced pediatrician (no GPs here) said she had never had a patient diagnosed so late. She went to such a tiny primary school that was so good at looking after her that she managed pretty well until the transition to secondary. It can be such a hard time for girls when they start getting catty with each other.

A diagnosis has helped my daughter understand herself better and helped how others see her, hopefully you will both find the same.

Thanks for this. Yes it’s been a long, hard few years especially as girls are so good at masking their difficulties as they just want to fit in. It became more apparent when she started Secondary school and she just couldn’t cope. We struggled until her 3rd year before pulling her out altogether to homeschool and with hindsight I wish I had done it a lot sooner. She is happy, confident and most importantly healthy (both mentally and physically) which is all I care about. Plus she is happily learning each day and achieving so much more as we work around her health issues.

We now have light at the end of the tunnel and are no longer feeling overwhelmed and helpless.

You sound like you’re in a good place too. Xx

DonnaD · 31 Aug 18, 01:26 PM

Originally Posted by Tillyjcm

Thanks for this. Yes it’s been a long, hard few years especially as girls are so good at masking their difficulties as they just want to fit in. It became more apparent when she started Secondary school and she just couldn’t cope. We struggled until her 3rd year before pulling her out altogether to homeschool and with hindsight I wish I had done it a lot sooner. She is happy, confident and most importantly healthy (both mentally and physically) which is all I care about. Plus she is happily learning each day and achieving so much more as we work around her health issues.

We now have light at the end of the tunnel and are no longer feeling overwhelmed and helpless.

You sound like you’re in a good place too. Xx

Amazing how similar their stories are. DD struggled on with very little help until year 9 when a physical accident triggered Functional Neurological Disorder and left her unable to walk and return to school. Homeschooling for her last term in the UK was not great for either of us! She is actually very social in some ways and wants to go to school.

Here she has qualified for a 1 on 1 helper and did fantastic last year. Sadly we are now realizing how much her exceptional helper and I propped her up in her academic work. Her helper has moved away and her new temporary one can't help the same way. It may be for the best as there are a lot of options here and a normal high school diploma might not be right for her. They are currently letting her join a self contained class for one period a day and lunch and she is loving it. Her 10 classmates are all autistic boys and they are all benefiting from practicing social interaction. Would you believe there are 3 separate classes for autism and at least 3 more for various other disabilities? If possible they are all mainstreamed for electives and still part of the school. So much better than only having "special schools" IMO.

They even have special wheelchair accessible school buses that pick up disabled kids at their house! I just have to get my daughter to try it now instead of me driving her at 6:30AM!

Glad to hear your daughter is doing better. As you said happiness and physical/mental health are the most important things.

TC Devon · 31 Aug 18, 02:22 PM

Thanks everyone. She’s moved to talking about it but as a recount of certain days of our holiday. She’s very quick to correct me if I’ve forgotten bits or ive got the order wrong!
She loved meeting the characters but would nt talk to them. On our first day the photographer made her pose in a thinking/listening pose- hand on the chin. She did nt know what that pose meant so I told her and showed her. So now every single photo of her meeting a character has her with her hand on her chin in a thinking pose 🤔
Her behaviour has been very trying since we got home. Not helped by starting y3 on Monday. She’s an incredibly demanding and I hate to say it but she can be so self obsessed. Is that autism or is that just her. She’s definitely in a bubble.
We also had mornings where she simply either refused to get dressed, get in car or at park get out of the car. In laws did not get it, did nt get her. It was quite fraught at times. Felt at times it was me and DD against the world. She decided she would only wear three dresses and two pairs of knickers so I did washing every night! Thank goodness we were in a villa!

DonnaD · 31 Aug 18, 03:52 PM

I do think the self obsession is autism. My DD at 15 is still this way. Yesterday if I heard "my throat hurts" one more time I was ready to scream. She can be very thoughtful too but as you say "in a bubble" a lot of the time. At 11 I thought her lack of interest in being popular or wearing the right clothes was a good thing and showed maturity. Now I realise she was actually withdrawing from almost everyone at school and it was actually a sign of her undiagnosed autism. Your daughter going through the rest of primary and starting secondary already diagnosed should help prevent alot of the problems we have mentioned on this thread.

I know exactly what you mean about feeling it is the 2 of you against the world. That is part of why my DD's diagnosis was so important to us.

Maryj · 4 Sep 18, 09:42 PM

We flew through Dublin and had the lanyard for my 15 yr old with ASD. This was fantastic and we were able to miss a very busy US pre clearance queue, without having to ask.
I presented myself each time we went though security in the US and asked to use the disabled line, explaining that we had an autistic child, we were always allowed to do this. When he started getting slightly agitated at security at Charlotte, the TSA official helped calm him down by engaging with him and asking what games he like on his DS.
Each time before we boarded I asked for preboarding and that was fine, on some occasions they called our names, at other times we were just told to presented ourselves before boarding commenced.
He finds it much easier getting on before everyone else and getting settled.

29 Aug 18, 10:04 PM	#1
	29 Aug 18, 10:04 PM TC Devon Imagineer
TC Devon Imagineer Join Date: Aug 15	Lgw lanyard and Autistic child and normal life after a holiday We returned yesterday and my autistic daughter (7) has cried on and off for days (even when on holiday about going home) She misses the villa, she misses Disney and universal. She says Our house feels wrong, she feels wrong. She won’t look at photos or souviners she bought because they make her feel sad. She’s bursting into tears all the time. She is nt great with change but she’s talking non stop about needing to go back. She wants to go back immediately. We just can’t afford to return for at least three years, to be honest she struggled when we were out there so we had some very stressful days. She seems to have forgotten that though. Although she does sometimes live in a bubble! She wants everything to be exactly the same when we do return, it won’t be as next time our inlaws are nt coming. I told her this and it has caused even more tears. She wants the same villa, same car. Everything the same. How do I help her. She was only diagnosed at Xmas so I feel I’m guessing how to parent her and do it properly. As an aside LGW were appalling with recognising and supporting her- even with lanyard. Passport control on our return was shocking, huge line, she had a sat down hands over ears rocking shut down once we got to the front- no one helped or acknowledged us. MCO were brilliant. Amazing help.

31 Aug 18, 02:22 PM	#8
	31 Aug 18, 02:22 PM TC Devon Imagineer Thread Starter
TC Devon Thread Starter Imagineer Join Date: Aug 15	Thanks everyone. She’s moved to talking about it but as a recount of certain days of our holiday. She’s very quick to correct me if I’ve forgotten bits or ive got the order wrong! She loved meeting the characters but would nt talk to them. On our first day the photographer made her pose in a thinking/listening pose- hand on the chin. She did nt know what that pose meant so I told her and showed her. So now every single photo of her meeting a character has her with her hand on her chin in a thinking pose 🤔 Her behaviour has been very trying since we got home. Not helped by starting y3 on Monday. She’s an incredibly demanding and I hate to say it but she can be so self obsessed. Is that autism or is that just her. She’s definitely in a bubble. We also had mornings where she simply either refused to get dressed, get in car or at park get out of the car. In laws did not get it, did nt get her. It was quite fraught at times. Felt at times it was me and DD against the world. She decided she would only wear three dresses and two pairs of knickers so I did washing every night! Thank goodness we were in a villa!

4 Sep 18, 09:42 PM	#10
	4 Sep 18, 09:42 PM Maryj Stuck in the Tower of Terror
Maryj Stuck in the Tower of Terror Join Date: May 14	We flew through Dublin and had the lanyard for my 15 yr old with ASD. This was fantastic and we were able to miss a very busy US pre clearance queue, without having to ask. I presented myself each time we went though security in the US and asked to use the disabled line, explaining that we had an autistic child, we were always allowed to do this. When he started getting slightly agitated at security at Charlotte, the TSA official helped calm him down by engaging with him and asking what games he like on his DS. Each time before we boarded I asked for preboarding and that was fine, on some occasions they called our names, at other times we were just told to presented ourselves before boarding commenced. He finds it much easier getting on before everyone else and getting settled.