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Hearing Test, Hopes & Goals.

I’m not sure if you will have read how Dylan’s first hearing test but I came away from it saying I would never take him too another.
Roll forward 16 months and he was due for a review as they couldn’t get a clear reading last time due to him screaming and being disgusted by the whole situation of it all. They told me that they would recall him in 6 months time, it didn’t go well either but not quite so bad. Again they couldn’t do the full test as he would not cooperate they told me he would be recalled again in 6 months but they weren’t worried about his hearing they just now had to get a positive result for their records.
When an appointment came again for him to be checked again but in a different hospital I put on my big girl pants and took it by the horns. I wanted to get this green check on his records, rule it out and onto the next thing.

He wouldn’t let them look in his ears for very long at all, but the lady knew straight away when he was getting distressed and didn’t force it on him unlike the ones at his previous appointments. She said the one ear she got a look in looked a little red, but seeing as it was winter time this occurs to most of us especially if we have a cold. We then went back to sit and wait for the next part, thankfully we didn’t have to wait long as he isn’t ever very happy about waiting in strange places.

In the next room he had to sit on my knee while a lady tried to get him to concentrate on something while another played different sound etc to test his hearing.
As they were doing this I was thinking to myself about how if it was his hearing we could fix this, help him and right it all.
As I found myself getting caught up in those ideas I had to remind myself that if he does have a problem with his hearing, we could sort that out but it wouldn’t solve the many other things he struggles with daily, he would still be autistic too.

When she left the room to go and talk to the lady doing the sounds I felt like I had just been to a job interview. Making him sit still, hoping he would behave the best and do his best in the series of tests he had just done.
Inside I was panicking a lot that they would come back and say that some of his problems was because he couldn’t hear very well, and that he would need to get that sorted alongside everything else that was going on.
Another part was hoping she would come back and say it was his hearing and that she had the perfect solution and it would solve everything!

Though I knew in my heart of hearts this was never going to happen, I say to people that I don’t like false hope that I want to live in reality with it all and I rather everyone be honest and upfront with what they think.
This is true, but sometimes I can’t stop the little bright ideas my brain thinks it has sneaking in and bringing a whole load of false hope and joy. When I realise I’m being crazy or when I’m even proved that I am wrong then it is a whole load of heartache.
This is why I try to live in reality and not give a whole load of false hope because it just knocks you back when you are climbing.
Obviously I agree with hope, everyone needs hope and goals.
I believe in attainable goals for my kids, ones I know they can reach or are close to succeeding in so that we can celebrate together rather than discuss things they haven’t reached yet. Celebrate everything, some things that you don’t even notice your children doing are huge milestones for children like Dylan and others. It really makes you appreciate the small things, like when he looks at you, when he tries something new, when he touches something he hasn’t before.
I know its going to happen soon so one of my goals for Dylan is that he will call me mummy soon and know I am mummy and not just use the world, another goal which is going to take a lot longer but I have accepted this is that when I smile at him for him to smile back.

-WeeOhana

8

Regression :(

Dylan has had a rather large & pretty upsetting regression recently.
He is finding anything outside of the security of his home a huge challenge.
Things Dylan used to really enjoy have become nearly impossible for him, and the hard thing is we have no idea what started this regression and what has made him so scared of being outside of the home.

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Parks have always been a little bit of a struggle for Dylan, but he used to be able to last about 15 minutes before he would start showing signs of distress and the need to leave, and this was ok. We could generally distract him and get him to stay for about 20 minutes which then meant Amellia got a nice amount of time to play too, but now its as soon as you even go into the car park.
You pull into the car park and he can see the park and this is a park that he has been to many times before so it isn’t a new environment that is setting him off and he just starts screaming and lashing around in his car seat. When you then take him out and set him down he is inconsolable, and because he doesn’t have any understanding to what you are saying to him it feels like an impossible task to help him understand that the park is fun, safe and you can enjoy it.
I can understand how this must sound crazy to most parents, I mean a child not enjoying a park it even seems crazy too me, how can my child not enjoy the park?
I have to teach my child that the park is a fun and safe place, that i itsn’t somewhere to be feared.
What makes it really hard for me to understand and to see is that if you walk to a park when he is in his pram he is trying to clamber out of his pram as is desperate to get out and play but as soon as his feet touch the ground when you get him out he just crumbles and cannot handle it.

Somewhere else that Dylan used to really enjoy going to is a little Mums & Tots that I go to that is just for children with additional needs. He used to love it, would run in most times sometimes he would have a little fuss but then would head straight to the ball pool and would spend the time happily pottering about doing whatever he fancied.
As of recent this is not the case at all. As soon as you pull into the car park he is screaming in the car and is not happy. I settle him down by letting him into the front of the car and he then pushes all the buttons and we head in.. as soon as the doors open he is straight on the floor screaming and giving off.. you would think I had taken him to a torture chamber and not a place he used to love.
Fortunately I don’t feel just as judged here as I would anywhere else. Many here understand and are very supportive, and I really think key to this all is making friends and chatting to people who are in the same situation as it really is an extremely hard one to understand unless you are in it too.

His favourite place to go used to be up to the horse where he loved getting involved with mucking out, making up the feed and just being around the horses, now he will just lay on the floor screaming and it is really horrible to watch, somewhere he used to really love and is so eager to get out of the car but as soon as he does something just stops him from being able to enjoy it.

I just wish he could tell me in some way what is going on, what is stopping him from enjoying these things and how to help because right now I feel pretty useless.

-WeeOhana

46

ToddleBike2 Review, Discount Code & Giveaway!

Many autistic children have poor motor skills and this makes many things challenging that you wouldn’t necessarily think about unless you were in the situation.
When I was offered the chance to try out the ToddleBike2 for Dylan I was really excited to see what he would make of it. The ToddleBike2 is really like a step before the very popular balance bikes you can get, it has four wheels and teaches the very basics of using a bike before having to worry about keeping the bike upright too.

The ToddleBike2 is aimed at children aged 18-36 months but can really be used by a lot large range of ages, Amellia loves Dylans ToddleBike2 and she is six years old! It has been tested up the weight of 100kg so your older ones can enjoy it too, without having to worry that it will break and it also has a 3 year guarantee just in case something is to happen.

IMG_0727.jpgThe ToddleBike2 is also extremely light and Dylan really enjoyed carrying it about for the first while and inspecting it. It took a little while of him carrying it about and playing with the wheels before he tried to sit on it.
With it only weighing 0.8kg it is really light to carry and would be perfect for taking out on walks and then when little one has had enough it is easily carrier for a parent!
We are going to keep to using it inside for longer for Dylan to grow his confidence on it but I know that it will be used a lot next summer when Amellia is out on her bike too!

IMG_1082Dylan started of sitting on it sideways and trying to shuffle along on the ToddleBike2 and really wasn’t sure how he was meant to make it move.

After some demonstration from his beloved Elmo and pushing Elmo about he then hoped on board himself and followed suit!

Look at that wonderful smile! Once he had is sussed he absolutely loved it, was on it all day and every time I put it into the kitchen he is bringing it back into the living room.
I really can’t wait to head out when Dylan is a bit more aware of his surroundings and the ToddleBike2 will go on many different surfaces with its lovely smooth wheels.

I totally love this ToddleBike2, when it arrived I was surprised at how small it was but do not let its size put you off. In fact, the size & how light it is really adds to just how brilliant this ToddleBike2 is. Another thing which I cannot believe is the little price tag to go along with how wonderful this bike is! It costs £23.95 and has free shipping to the UK & Ireland. Though if you aren’t lucky enough to win the giveaway I also have a 10% discount code to use here, the code is BLOG17!

Here is your chance to win a ToddleBike2 for your little one or a little one that you may know! You have to be in UK & Ireland to enter and you will have the choice of pink, red or blue. This will run until the 29th of November, Good Luck!!

 a Rafflecopter giveaway

1

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

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