8

My Sunday Photo – 23.07

This week we have spent a lot of time enjoying beautiful beaches around us!
Amellia went down to visit my mum & dad for a few days so I took Dylan along to the beach alone so that he could play in the sand and if he hated it we could leave straight away without feeling guilty that Amellia hadn’t had a chance to play. He loved it!

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Seeing as he really enjoyed it I decided that I would take them both to the beach together to play.. typically Dylan fell asleep in his pram walking to the beach! Amellia still had a lovely time playing with the waves, etc! =]

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How was your week? =]
-WeeOhana

Photalife
0

They aren’t all the same.

Many people have been telling us how lucky we are that we have already got Dylan seen by therapists, that we have got his education plan started and that we are already on the right route for him. Though how true really is this?

They tell you of the story of their best friends, cousins, aunties child who was only recently diagnosed at the age of ten. That they had been going through school without getting any extra help as they didn’t know anything was wrong until the school or someone else pointed it out. They then encouragingly tell us that Dylan will do great because if this kid could do it in mainstream school, why couldn’t he. That people didn’t even know, so people won’t notice with Dylan.
By this stage I’m already tuning out, nodding along, or looking at them like that have 6000 heads.
Don’t get me wrong I am super pleased that this child that they know somehow is now getting extra support and doing fantastically, but lets be realistic
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If you think these stories that you are telling me are helping me, or if you think all autistic children are the same; I encourage you to come to my house, give Dylan his lunch and then take him out to… let’s say for example soft play. (All children love soft play, right?) You can see what its really like and I can have some much needed me time, maybe I’ll clean, bath, or even have a nap!

Now that you are back to a refreshed and rested me, let’s have that chat again.
Do you now understand how this story is a much different case than Dylan?
You see, he couldn’t cope in a mainstream school. He is non-verbal, and well you have just had him out for the day so you witnessed his melt downs, how he lacks the understanding of any basic instructions, that he doesn’t enjoy what most kids enjoy, that there is no chance that he could make it to the age of ten before we questioned this. How in a mainstream school he wouldn’t cope a day, let alone several years?

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I will listen to your story and tell you how great it is that this child has now got the help they need, but please don’t try and link it to my son until you have witnessed what he is like.
That it isn’t just because of my background that this has been spotted early, that this would have been spotted by my health visitor anyway even without my questions and phone calls to her.
My son has severe autism, this affects everything and anything he does, every day.
Not just when he hasn’t slept well, or has a cold, or on Sunday.
This is every day, everything we do, and anything he does.

“If you’ve met one person with autism, you’ve met one person with autism” – Stephen Shore.

-WeeOhana

0

Summer Holiday Success!

These summer holidays are going fantastically!
I was so nervous about how Dylan would be with his routine being a little different, no school run in the morning and being with his sister twenty-four seven, but it is going fantastically. It seems to have came at such a perfect time.
We are all starting to understand Dylan a little more and Dylan is starting to learn that Amellia can sometimes be good fun to be around and she wont just steal his iPad or his food!


It is simply wonderful to see them playing together, interacting and laughing together. For a while Amellia found it very difficult to accept that her brother didn’t enjoy playing things how she would, or that he didn’t understand tag, taking turns or how building a tower together is fun and not to just knock over what she is building! She has learnt to adapt, she now plays with him how he understands.

They play simple things, like jumping on the sofa together (think we will replace them with trampolines), running back and forth across the room and throwing the balls about.


Amellia is a wonderful big sister, she has completely adapted how she plays with him and now knows that if she wants to play with him, she needs to enter his world rather than expecting him to understand what she wants to play.
When they are playing together she makes the same noises as him, encourages him to laugh and sneaks in little kisses and cuddles whenever she can! He really enjoys this, and will even go and take her hand whenever she stops playing to try and get her to carry on. Generally, he is pretty good at getting her to play again, he doesn’t take no for an answer and she enjoys running about like crazy and playing with her little brother.


The other day we took them both to a lovely little and quiet park. Dylan was having lots of fun doing his usual climb up the ladder and down the slide over and over again, until Amellia caught his eye. She was playing on a climbing net that spun. Instead of going back to the stairs and down the slide he went over and started running around with her spinning this, she then ran off to a see-saw and he followed and wanted to join her on this, after that she then ran off to another thing in the park and he joined her too! It was simply wonderful. There bond is growing, it took a while to start, for them both to accept each another for there differences but they seem to have really hit it off recently. As parents, this is simply wonderful.
Amellia always strived for a relationship with her brother and she is now slowly breaking down his wall and building her own with him.

I love my kids, they are simply incredible each in their own unique way. ❤

-WeeOhana

2

DLA Does not make it all ok.

Since Dylan’s Autism has become a lot more obvious to others around us and after it being more or less confirmed at our last appointment there have been a few comments people have made that have bugged me. Especially from people who were ‘friends’ at the start of all this and then have slowly floated away because they just don’t want to know, think it will go away when he gets older… that’s for another blog post! But anyway… back to this one.
A couple of people have said to me “well, at least that means you can get DLA now.” Oh yes, fantastic. It’s going to solve all my problem, because I can pay to fix him… oh wait. No.

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Yes, I do get DLA for him, it is because he needs that extra money to get him things that other children wouldn’t need and if you have ever looked at things for children with disabilities you will notice that as soon as you add the word, disability, sensory, autism, or any other words to what you are searching for it nearly triples in price. This really annoys me, as these children need these things, but I can also understand why places do it, people need these things so they can charge whatever they want for them and if you think it will benefit your child you will find a way to pay for it and get it for them no matter what.

To buy Dylan a pram that will do him for a while as he is obviously starting to outgrow his pram that he has now is £700+, private speech therapy is £40 a time, private occupation therapy is £50+ a time, you also hear about how music therapy, animal therapy, and many other things that really help autistic children. Especially at an early age as they say everywhere that early intervention is key with things like autism as it helps to break down barriers and make them more willing to join our world a little bit.

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Some speech and occupational therapy is done for Dylan with the NHS but personally I’m really not sure how much once every 3-6 months really counts as early intervention. I know they have lots of children to see and I have been really impressed with everything they have done with Dylan how fast we are getting him seen etc, but a lot of this is because of how obvious his autism is. People say that I should be thankful that we are getting seen so quick and referred on… to me in a funny way, this shows how obvious and severe it is. (Another blog on this to be made too!)

Yes, it is good that we get DLA for Dylan, it takes away a little of the money stress, it means that we are ok for me to not go back to work like they suggested, and we can buy him what he needs and when he needs it because at every Speech & OT we go to they always suggest a whole heap of new toys and things to help him.
No, it doesn’t make it all “a little better” or even better at all. I am still in shock that some people think that money can make this better. Money will not provide a fix, it will provide things that help him live a little happier in our world, but it won’t make it all go away or make it all ok.

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This is Dylan, and Dylan will always be autistic.
We love him though, just as much and even more so than others love their children.
We have to go above and beyond to help him, to teach him that interacting it good, even if it is just to give me his cup when he needs juice rather than just screaming.
We are starting to learn what his wants and needs are, or how to sense from just a tiny little thing that Dylan does means that he has had enough and needs to get away.
DLA though, does not make it all ok and if you think it does make it all ok for someone with a disabled child, then think again.
Can money really buy happiness and fix everything?
What is your answer to this now?

-WeeOhana

20

My Sunday Photo- 16.07

This week we have been doing a few different things!
We popped over too see my lovely sister in her new work place- Indie Fude. It is a fantastic little shop with lots of wonderful food and treats all locally sourced! We grabbed some make your own pizzas and a few other bits for treats afterwards! Amellia really enjoyed the Aunt Sandras honeycomb and says it is the best she has ever had!
She made a heart shape pizza and couldn’t wait to tuck in! She loved it!

When we were visiting my sister we grabbed a very tasty chippy and Amellia just had to have a slushie she loves those things! I can’t get over how grown up she looks in this picture!                                                                        

Another day we went for a lovely walk around Crawfordsburn country Park and had fun running about in the wild flower meadow!

Our much loved fish Pudge got a new tank as he has nearly doubled in size since we got him and is forever growing! Suitably named after the fish in Lilo & Stitch too! =D

Dylan really enjoyed wearing his sisters hat! He looked like such a cutie in it! She didn’t mind at all, this whole being off for summer thing has really helped their relationship! =D

How has your week been?
-WeeOhana

Photalife
4

Crash Bandicoot!

Not many of my readers will be aware, but I have a huge love for my PS4.
I play it most nights and have a large range of games that I really enjoy playing. It’s an escape for me, somewhere where I don’t have to be an adult and I have to focus so much that I zone out and forgot about the real world.

When I heard that a Crash Bandicoot game was coming out I got rather excited, but once I discovered that they were just remastering the first 3 from PS1 and it didn’t have Crash Team Racing on it I was a little disappointed.
I bought it after a few days huffing, justifying that it’s a game Amellia could play and would enjoy… as soon as it was turned on, I didn’t want to give the controller up! The memories and the need to get all of the boxes to get the box crystal as well was far too much! I had to give up my desire to play it solidly all day and let her have a go! She died… a lot, but she was having fun so that’s all that mattered!

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Once the little ones were fast asleep in bed we turned Crash Bandicoot Warped on! It was always a favourite in my family and we would sit for ages playing it, trying to beat each other’s top time to complete the levels! The hubby though had never played Crash before… I mean, who hasn’t played Crash before?! I was stunned! We settled down with a few drinks and got cracking!

All of a sudden it was two in the morning and we had been playing it the whole night!
We gave up on collecting the box crystals and are going to go back through the levels to get them after we have all the extra skills you pick up at each boss, but the memories!
I could remember nearly every single level that we played and quickly understood why my dad got so angry at levels when he kept dying at the really easy parts!

It was called a night though whenever we became stuck on the same level that was always a pain.
The motorcycle one. If you have played this game you will know what I’m talking about.
I swear those little blue go-kart type cars go fast than crash on his motorbike!

This game really made me feel so nostalgic. Absolutely worth a buy, even if it is just for a trip down memory lane; it’s also Fantastic, infuriating, simple, family friendly and fun!

-WeeOhana

 

2

Apps for kids!

e Are Launching Soon

Recently I have been asked by a few people what apps the kids use; so I decided to make a blog about it.
This one is about the apps that my son loves to use, I will do one shortly about what ones my little girl likes to use too!
The majority of these apps are free, or at least have a free trial for you to see if your children enjoy them! =]

Alphabet

  • Meet the AlphablocksBased on the Cbeebies T.V show. It teaches your child the sounds that letters makes.
  • Talking ABC- by Hey Clay. This app helps children to learn the alphabet and links an animal to each letter. It also has several mini games, point to the right letter, puzzles, who is it, memory game and a few more.
  • Endless ABCby Originator. This app is by far the favourite among with others made by them. You can choose from a huge range of words, it then jumbles the letters up and a shadow is left for where they belong. As you move each letter it sings the sound that it makes. When you have completed the word it then explains to you what the word means and shows you a short clip to explain it.
  • ABC Phonics- by Pink Fong. This app sings a little song about the letter you choose with many words in it that begin with the same letter. It then teaches you how to write these letters in lower and uppercase. There is also a mini game for each letter too!

Numbers

  • Toddler Counting 123-by giggle up. This app brings up a random number of items and as you click on each picture it counts them for you.
  • Endless 123-by originator. You can choose whatever number you like and it moves and leaves a shadow for you to move the number to. along with a few numbers either side of it. It then does a simple sum for what would create your chosen number. Then it will do a little story about the number too!
  • Lets Count- by Fisher Price. This counts 1-5 with lovely, bright and simple to count animals. It sings a lovely song too.

Colouring & Drawing

  • Dipdab- based on the Cbeebies show. This is a great little app where you get a short little animation with dipdab at the start and then you are given a dashed line to show you what to draw. Then your drawing is used in the next bit of animation.
  • Rain Cubes by unity. You are given a blank page and as you touch around the screen coloured cubes drop down and form a 3D picture.
  • Drawing Pad- You can either draw on a blank page or on a picture that you have taken. As you draw it plays a lovely little tune and when you stop it stops the tune.
  • Touch Free-by unity. This app brings up simple shapes which are white on a black background and plays relaxing music. You then draw over the white to complete the picture.

Games & Fun

  • Playtime-by Cbeebies. This is a wonderful app, it has lots of games on it from different programs on Cbeebies. All very simple, easy and fun!
  • Sago Mini- This is the maker of a wide range of apps. Vivid colours, fun and easy games. Our favorites by them is; Roadtrip, where you get to choose a car, pack a suitcase and drive down a road encountering lovely flowers, animals etc. Music box, you fly about in different forms of transport and when you click up high it plays the high notes and low for low notes from well-known nursery rhymes. Monsters, is where you get different shapes to choose from, you can then draw on them, add items etc to them. You then get to feed them, brush their teeth etc.
  • Totoby Dr.Panda. You look after a little tortoise by wwashing him, making him sandwiches, giving him medicine when he is sick etc!
  • Magic Tracks- by budge. This is a game based around Thomas The Tank Engine. It is like your own miniature railway track. You drive Thomas around and come across mini games and unlock other engines and items to place around your track!
  • First wordsby Tiny hands. This is a great app for them to learn a wide range of things from clothing names, shapes, food etc. You get one of the items at a time and have to match it to the same picture. When you have done this it tells you the name of the item!
  • Get Well Soon-by Cbeebies. This app teaches your children about going to the hospital, and learning about the human body.

Video

  • Disney Life£5.99 a month. Can be put onto ten devices. It has nearly all of the Disney movies, programs, cds and books on it. You can download them so that you can use them when you are not connected to the internet. You can also watch the Disney channels live.
  • Netflix- £5 a month. Again a whole range of videos and movies. You can also download the majority of these so you can watch them offline too!
  • Iplayer kids– This has all the cbeebies & CBBC programs on it. You can download these to watch offline and has many seasons for all of their programs on it.
  • StoryBotsMany short videos on her about the alphabet,numbers, shapes, dinosaurs, colours etc on it! Lovely simply videos and catchy tunes to aid with learning!
  • YT KidsThis is a great app as it means that you can leave your child to browse through many videos that are all safe for kids!

I hope your children enjoy these! If you have any apps that your little ones like I would love to hear about them and add them to their Ipads!
-WeeOhana