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How to get help with disabilities at Universal Studios & Disney world

Disability Passes in Universal & Disneyworld!

When we headed to America I was really worried about how Dylan would cope, but I had done a lot of research and had heard about how great the parks were with dealing with disabilities and the help they would offer. I thought I would put it all together in one post for you guys to see what they offer, how to get it and how it helped up!

Disney World

At Disney the pass is called the DAS pass, this stands for Disability access pass and is a whole load of help, our visit would not have gone so well without it. First of all how to attain this pass, is to head to guest relations in any of the parks. From reading online if I was you I wouldn’t try to get it at Magic Kingdom as the que can be quite long when the park first opens, so we headed to Hollywood Studios and picked it up there. We went in and I asked the lady how we went about getting the DAS pass for my son and she said that she would help sort us out. She took a quick picture of Dylan and connected it to his Magic band and scanned all of ours then asked about how he would be if he had to leave his buggy so I explained that if he was in ques around lots of people he would find this distressing if he didn’t have the safety of his buggy and would run off as he has no danger/safety awareness so she then provided us with a sticker for his buggy that meant crew members would treat his buggy as a wheelchair. This was amazing, it meant when we were queuing we didn’t have to worry about him getting distressed in the que and meant that he enjoyed the rides when he was in them as we could take him straight from his buggy onto them and it was waiting for us at the end of the ride too.
The DAS pass was wonderful, it meant that if there was a ride we wanted to take Dylan on we could just go to the ride and pick up a return time which was the wait for the ride minus ten minutes and then when we returned we could then go into the fast pass line. You can only have one wait time on your band at any stage and the person who holds the DAS pass has to be going on the ride because obviously it is to benefit them.
It was very simple to attain the pass, a lot less stressful than I thought it was going to be and all of the crew members at Disney were very accommodating, welcoming, super friendly and just made our visit simply amazing.

Universal Studios

At Universal it’s called the AAP which stands for Attraction Assistant Pass, and is pretty similar to the pass at Disney. You pick it up from Guest relations which is just inside both parks, we went in and again I asked about how to acquire the pass and after a few quick questions it was quickly set up and he also did that Dylan’s buggy was to be treated as a wheelchair too, so this meant again he could go in the ques and the shows in his buggy. The AAP works slightly different because if the ride has less than a thirty minute wait you can then just go into the express pass line. If it has a longer wait you then get a return time and like the Disney one you can only have one wait time at any stage. We found what also helped here was that lots of the rides me and Ad wanted to go on had single rider lines, and you basically got to just walk straight onto the rides as the waits for them were pretty damn long without doing that. It then ensured that my mum wasn’t having to sit with Dylan for a long time because he can get worked up really quickly unexpectedly and then hard to settle.
All of the staff at Universal were amazing, very helpful and just generally lovely people.

 

Hear how our flights went here, and ill be posting more about our visits shortly!

-WeeOhana

 

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Still coming to terms

I’m still coming to terms with it all
it ain’t fun and games
It’s tough, it’s real tough
The future I imagined has had to change

One day our world flipped 180
This is not what we had ever envisioned
But we are learning how to help
I just wish I could make everything okay

I know this is a long and tough journey
Full of many unexpected twists & turns
Wonderful joys
And dreadful downs

I will always do what’s best for you
I will fight for what you deserve
Help you understand what’s going on
And encourage you to grow

You mean the word to me, to us.
My perfect little person, flaws & all.
You complete this family.
You complete my heart.

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A-Z

Recently First Time Valley Mam shared an A-Z of what autism meant to her, I thought this was a great idea and something I am going to try to do once a year to see what I have learnt throughout the year and how things have changed.

A – Autistic.
This word has crossed my mind for as long as I can remember, one that I am still coming to terms with and trying to learn everything I can about.

B – Battle.
Everything feels like a huge battle, we have to fight for so many things to get done at the right time to enable Dylan to have what he deserves at the right time.

C – Counting.
Numbers are a huge thing to us now, Dylan loves numbers and trying to count as he goes along. Often he will just be counting his foot steps as he walks along.

D – Dylan.
My wonderful little cheeky monkey. He makes me so proud and amazes me often, with that curly hair of his and cheeky smile what’s not to love.

E – Eating.
How can one of my children love food and the other have such a huge aversion to eating. It is a constant struggle to try to find food that he will eat that isn’t mince..

F – Friendships.
When something so huge happens in your life you really find out quite quickly who are your true friends, and then better still you go on to make friendships that are true.

G – Goals.
Something that I have found has been really important to helping myself keep a level head is setting attainable goals for Dylan. Ones that I know he will reach sooner rather than later, I feel if you set big goals that aren’t very attainable you end up beating yourself up about it.

H – Home
These four walls are starting to send me a little mad, Dylan is not one for going outside or to places he doesn’t know. We are back to even the park being a huge struggle for him, home is his safe place where he wants to stay 24/7.

I – IPad.
Something about those sped up, backwards, slowed down videos of the gummy bear on YouTube make Dylan’s world complete,  he loves his iPad and without it we wouldn’t be able to go anywhere. It seems to be able to help him zone out from everything around him.

J – Judgement.
I’m having to grow a thick skin very fast, you get so many judgemental looks and comments when you are out & about.

K – Knowledge
My knowledge about autism is ever-growing and I know that it will never stop.

L – Lines
Lining items up brings Dylan so much joy, but if you touch that line or move it you better be prepared to put it back as quickly as possible.

M – Meltdowns
With very poor means of communication Dylan has many meltdowns. He can’t tell us what he wants and we can’t explain anything to him, I’m hoping in time these will become less frequent as he grows older and we find a way to communicate.

N – Nonsensical
Recently Dylan has started babbling away to himself and I can not wait for it to start to actually make sense!

O – Obsessions. 
Dylan’s obsessions go far beyond what I ever thought an obsession could be. If he has a set of figures and loses one he gets very worked up extremely quickly. Thankfully nothing has gone missing for good so far.. normally they can be found under a sofa or even just sitting behind him.

P – Pointing.
This is something that I am working on teaching Dylan how to do, not something I ever thought I would have to teach a child to do.

Q – Questions.
My head is full of questions but as soon as I get the chance to talk to a professional somehow they just vanish as if by magic. I’m sure I will always have tons of questions floating around in my head.

R Repetition.
Dylan’s favourite thing is repetition, his play is repetitive, the videos he enjoys, what he eats, literally everything Dylan does and enjoys is based on repetition.

S – Sibling.
Recently the bond between Amellia & Dylan has grown immensely. Obviously it has to be when they are both in the right mood, but when it happens it is simply wonderful to watch them getting on and enjoying each others company.

T – Treasure.
I now treasure so many memories that others would not find a huge ordeal. These are so important to me and are what keep me going on a rough day.

U – Understanding.
To get through this all we have to be understanding as a family. We have to understand how it affects each of us, and help each other when we are struggling.

V – Verbal.
Dylan has started to use echolalia a lot when watching videos of his favourite things. We are hoping to expand on this in the future so that we can communicate with him and he can communicate with us to tell us what it is he wants or needs.

W – Worry.
This is something I do constantly. I have always been a worrier but now it has got a lot worse as I’m sure you can understand.

X – Xmas.
It was a rather painful time for us that Dylan just had no understanding whatsoever of what was going on, Amellia loves xmas and I hope one day Dylan will love it just as much.

Y- Yourself.
Something that I have lost during this whole thing. Becoming a mother changes someone greatly, but becoming a mother to a child with additional needs is an even greater change that I can not explain.

Z – Zips.
Something that Dylan finds rather distressing unless they are done up right to the very top.

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-WeeOhana

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CDC Again..

Think this was our 4th, maybe 5th CDC with Dylan. When I was told that it would be a different paediatrician than my normal one who has seen Dylan since he was 16 months old I was a bit annoyed. I was told that they didn’t know when she would be back in so I obviously took the appointment that was offered to me to help to progress through everything.

Whenever we attend any appointment with Dylan we tend to wait in the car until two minutes before the appointment to go in. This is due to Dylan getting extremely worked up if we have to wait in a strange room with other people in, so we have found that this is the best way to ensure that he keeps nice and settled before hand. When we went for this appointment though they were 20 minutes late. Dylan waited a lot better than he ever has at the very start but then he started to get more and more anxious and after 10 minutes I was back to doing the usual of walking up and down the hallway trying to stop him screaming and to calm him. Ad went out to ask them what was going on and was told that at the start of every CDC they always discuss for 20 minutes. Now I have been to my fair share of CDCs and this has never been the case and was even more frustrating knowing that they were in that room beside the waiting room with the two-way mirror being able to hear and see how worked up Dylan was getting.

Eventually they came to get us and it was the new paediatrician that we hadn’t ever met, as soon as we sat down she asked such a ridiculous question especially seeing as they had supposedly been chatting about Dylan for the 20 mins we were waiting .. she started off with-

So, what are you concerned about?”


I just started to cry. Not huge sobbing crying because I was keeping myself together in front of everyone but I looked at her and replied with one word – Everything. 

I composed myself a little, but I did go on a little rant. I wasn’t mean, or rude I just expressed how frustrated I was by everything that is going on. To be honest I think I have every right to be frustrated and everyone in the room said at the end of my little rant that they could honestly understand why I was so frustrated.
Dylan was first seen at the children’s centre when he was he was 16 months old, he was referred at 13 months old. Even from the very first appointment we have been told that he is autistic and that he would need to attend a special needs school.
When we first went we were told that it is great that Dylan got referred so early as Early Intervention can make a huge difference to a child… but we have seen none of that. Not a single thing until very recently when speech therapy started 2 weeks ago.
We have also been told that the waiting for an official diagnosis is a lot longer than it is meant to be. You are meant to be seen and have the diagnosis within 12 weeks of doing the parent interview… we have been told that it will be a 9+ month wait.
I mean, we need this official diagnosis as much as professionals keep telling us that he is severely autistic my heart and mind are going through daily and sometimes even hourly battles over this. This is destroying my mental health, putting huge strains on our relationship and causing out family to suffer.

We were told that he may not get a place in a special needs nursery because the wait list at the moment is really long to get official statement done and we were told to not get our hopes up for him to get a nursery placement.
I mean COME ON!! We were apparently referred at the earliest stage possible to the education board so that we could get this done and sorted and not have to fight and wait for this like everything else, but now we have been told this. What the hell else am I meant to do?

Everything is just not right and something needs done about it.
Who can I contact for help?
I need this all sorted so I can then concentrate on sorting myself so I can be the best mother possible to my kids, to know how to help Dylan the best I can… This isn’t fair on our family and many others I know going through this.

Also, to add, Dylan needs a new high chair, he is too heavy for his current one and without being strapped in Dylan will not eat food. He does not seek food or enjoy food, but the NHS will not provide us with one or even help us to get one because it is classed as a restraint. Same as a car seat, its classed as a physical restraint but they have told me that they know Dylan needs one as he escapes from a seatbelt and that it isn’t safe.
Since when did a child’s safety & well-being stop being the main concern??

Sorry I went off on a bit of a rant… but I hope you can understand why, and if you know where I can go for support and advice to push these things further forward please do get in contact. 

-WeeOhana 

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Don’t dwell…

Must Not Dwell.. (1)

I have started 2018 with a bang and completed my online course that I singed up too to extended my knowledge on autism with a pretty impressive 100% on all modules.
I am pretty chuffed and it sure has given me a nice little boost of pride and self-confidence to start the year with.

The course I completed was compiled of these modules;

  • Understanding autism
  • Autism and communication
  • Autism and sensory experience
  • Autism, stress and anxiety
  • Autism: supporting families

I found out some facts from doing this course that I wasn’t aware of, but the majority of it I knew from living daily with an autistic child.
I think this course would be beneficial for people with very minimal knowledge on autism, but if like me you live with autism in your life daily then it probably wont provide you with much extra.

I learnt some facts that really shocked me and admittedly scared me too.
Did you know that only 15% of autistic people are in full-time employment? 75% of the population are in full time employment.
I mean.. how crazy is that, and how does that give me any hope for Dylan. It seems absolutely bizarre that the percentage is so low and really unsettling for parents of autistic children.

At least 1 in 3 autistic adults are dealing with severe mental health struggles due to lack of support. 70% of autistic adults believe they are not getting the help from social services that they require and they also said that would feel a lot less isolated if they were given the support they need and what I believe to rightfully deserve.

It’s crazy, it really is.
The future scares me, it really does. Its something I try to not think about too often because it worries me, really worries me.
What does it hold for us, how well will we cope, how we can get the best for Dylan possible and all while keeping the balance of family life right too… it’s a lot to think of and far too much to dwell on.

-WeeOhana-

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3rd Birthday!

On Saturday Dylan turned three.
I mean how fast was that? It feels like he was only just a tiny little newborn, though in other ways it feels like it has gone so slow with all the constant waiting for appointments.

Dylan spent his day doing exactly what he wanted too do, what better way to spend your birthday?
Amellia was awake first and came and lay in our bed with us until Dylan was awake and ready to go downstairs. Thankfully we didn’t have to wait too long before he woke up but it gave me enough time to try and explain to Amellia that he wouldn’t be eager to unwrap his presents like she is and to let him look at them in his own time.

We weren’t really sure what to expect with the unwrapping thing and how he would even react to the whole day. We only wrapped a few of his presents to try and help him not get too overwhelmed,. With it being impossible to explain to him that it was his birthday or what a birthday was we couldn’t prepare him for what to expect which is the same for everything that we do with him and one of the reasons why he struggles so much.
With it being his birthday and him having no clue and no excitement its a pretty tough hit to take as a parent. You always think of your children loving there birthdays and having the best day ever, but to Dylan this was just like any other day with a few new toys.

When we got downstairs he headed straight for the Elmo and cookie monster teddies that we had got him as he totally adores sesame street at the moment and he has always loves teddies of programs that he loves. He would have played with these all day but Amellia was desperate for him to open his presents from family over in Wales, thankfully I was able to distract her for a little while so that Dylan could have a little play, but she was so excited that it didn’t last too long.

With a little bit of encouragement and a helping hand from Amellia he got his presents unwrapped and had lots of fun looking at what he had got.


After we had had breakfast I then took Amellia out to play in the snow so that Dylan could have a look at his presents by himself and enjoy them slowly while she wasted some of her never ending energy racing about in the snow and getting some quality time with myself too.

After we had defrosted a little inside it was time for grandparents to come over. We enjoyed some cake, more presents and chat. Amellia then took her grampy back outside to throw snowballs and go sledding. She really loves the snow. It also meant that the house was quieter again for Dylan to help him regulate himself.

After everyone then had left we had treated the kiddies to McDonalds for Dylans birthday dinner as this is something that he actually eats. Madness right, but apparently no one makes chips like McDonalds.
Amellia & Adrian headed back outside for a last play in the snow before bed and then as if by some miracle Dylan took my hand and stood by the door. Now if you read my recent post you will understand why this was a huge step, so I very quickly got his shoes & coat on and mine then opened the door. I expected him to slam the door right away but wanted to be prepared just in-case.
He took my hand and marched off down the street!!
I was over the moon, I mean what he has been like recently about going outside and then he does this it was incredible! He wanted to stay outside all evening though, so we let him walk round the block a few times and I headed in while Adrian did another lap so that I could make inside even more exciting that out!
After a little fuss he came inside happily and watched Storybots while playing with some goo.

After this real emotional high for us and thinking the day had gone pretty well Dylan then quickly changed. After getting his pjs on he had a huge meltdown. Amellia was trying so hard giving him his favourite toys and everything she could think he would like but every time he was just lashing out at her, so Adrian took her upstairs before she ended up hurt and we could see how hard she was trying to help him and was getting frustrated that she couldn’t help.
He wanted me to stand up, but not touch him or be near him so I sat on the sofa and he was pulling me back up. I tried everything I could think of and in the end I just kept putting him back on the matt we have so to prevent him from hurting himself when he was head banging.
It was getting to the stage where I was hoping the snow would disappear so I could take him for a drive as I just had no idea what else to try. I ended up just sorting the room out around him so he could still see me and I was stood up because me sitting for some reason was really annoying him and then the next thing I knew he had passed out he had screamed so much.

Poor boy, it was horrible.
The day had just caught up with him and was too much.
-WeeOhana

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DIS – Week 6 – Last 1

I went along with a little sadness to Dylan’s final DIS appointment, the past six weeks seem to have flown by and with this being the last one it brought along many feelings.

I was feeling pretty annoyed that they now don’t offer two sets of this and only do the one, I wish they would still do two because Dylan really showed lots of progress while attending this and I think if it was for a longer course I would then also see the benefits, progress and advancements outside of the DIS room too.
I was also upset because Dylan had really enjoyed this and had really started to enjoy going into the children’s centre and I know next time we go in he will lose the plot.
Full of happiness and being proud of Dylan too because he has coped so well, grown to love going and had came so far with her.

The speech therapist came along too see him at the last one as she is the one who had referred us on to the DIS but had told us not too expect too much. After the second one I was thinking that she was right and he wouldn’t get too far along the course before we deemed it a waste of time. She came in about 5 minutes after we had got started and she said she just couldn’t believe the difference and that it was like she was with a completely different child in the room. Because she has seen that routine is really key for Dylan she is going to try and get a regular speech and language slot for him which would be fantastic as I think this would really help him.

DIS was great and I would advise you if you have been offered it to give it a shot no matter how you expect it to go. We really didn’t think Dylan was going to be ready for it at all, but he showed us that routine really is key to everything he does.

(Sorry this post is coming to you pretty long after we went to our last DIS, but we have had lots of appointments recently and I haven’t really been coping to well either, but will update you on everything in the next few blog posts.)

What is DIS?
DIS Week 1
DIS Week 2
DIS Week 3
DIS Week 4
DIS Week 5

-WeeOhana