2

What’s your advice?!

Dylan has his first appointment with the dietician coming up soon! 

I’m not entirely sure what to expect but if they can give us some advice on how to encourage him to move off this diet of toast, mince and rice crispies would be great!                                    

I don’t have any concern about his weight really as he is pretty sturdiy and healthy looking boy, but eating a diet that is very minimal isn’t going to be the greatest for his inside. 

We have to remember to do his food diary for three days before we go, but I’m pretty sure I could fill it in today and it would be right for then as we have tried everything we can think of to get him to eat other things!

To try and encourage him to have a more varied diet we have done from lots of messy play (which he really dislikes) too trying to sneak tiny bits in.. he spots it a mile off! At our first appointment with the CDC team we were told to do lots of messy play as your mouth is very closely linked to your hands with the feelings that they both feel.  

                                                 

We have persisted with the messy play, but he is still on dry pasta, sand and painting has recently been accepted but unfortunately that is about as far as he is willing to go at the moment. If we try him with things like shaving foam or anything even slightly goopy/sticky he will just leave the room and not come back in until it has been cleared away. 

It’s hard work, but at least he eats something and isn’t wasting away.                            

Fortunately what he does like to eat is very healthy too.. though I’m not sure how long you can eat mince meat for dinner before it gets bad for you as I’m sure all that iron isn’t the greatest!

Have you any hints or tips to try and encourage him to eat a more varied diet?                        

Help!

-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

Verbal; but not happy.

Recently I have been finding things really tough..
Obviously I am over-joyed by Dylan’s progress, being able to know the names of colours and to say the sounds for the majority of the letters in the alphabet, don’t get me wrong, that’s incredible.
I’m really proud that he can do these new things and that I can hear his voice, but it is still not communication with another human.
It’s also slightly odd to celebrate your child’s first word when it isnt a sterotypical first word. As parents you always discuss when they are babies and they are growing up.. ohh will they say mummy or daddy first and you always have a little sort of joke and competition about it. (Even though we all know dada is likely to be the first as it’s the easiest to say!)

My child’s first word though, was “brown” he loves saying it and he gets so excited and is really pleased with himself when he knows the colours of things, but its tough.
As a parent, your heart always flutters when your little one calls out for you, be it mum, mummy, dad or whatever name they have for you. It’s special and you will always recognise when its your child calling for you even if you are in a park with lots of children shouting it at the same time.
Don’t get me wrong, I will automatically recognise Dylan’s little voice even if it is just shouting out colours; I mean I don’t think I have ever heard a child be so excited over colours or the alphabet before, but he really loves them.
He loves me and I know that he does, he shows it to me in other ways but I still just strive to hear him call me “mummy.” In reality, no one knows when this will be. It could be tomorrow, or it could be months and months away.

Though I also feel very guilty for feeling like this, I should be so ecstatic that he can do this, its incredible clever, wonderful and I can finally hear his voice.
I shouldn’t be letting my own selfish needs to be called mummy cast a shadow over this moment. Unfortunately though I just can’t shake the feeling niggling away at the back of my mind.
I think also with some people saying things like “oh that’s great, he is going to be fine now!” is just really bugging me. How does this make him fine? Yes, he can tell you what colour your pencil is if he wants to, or what letters you have printed on your top, but he can’t tell you how he is feeling, what he wants, or what’s annoying him. It is still all a huge guessing game for me, one that is extremely exhausting mentally and physically.

I think one of the hardest things about this all is the unknown. There is no book, rules, or general things that they all do at a certain age or time.
Unlike with my daughter she had milestones to meet between certain ages and the majority of children do these things in the ages set down.. but Dylan and other children like him.. it’s all the unknown, there isn’t any milestones he should reach at a certain age it’s just all about going with him, working with him and whatever he does next we will celebrate greatly, but what is it that we will be celebrating next, no body really knows and I think the unknown is a very scary thing for the majority of people.

-WeeOhana

1

Learning Curve to friendship <3

Amellia has been working really hard on building up her relationship with Dylan. She understands that he is a little different to others and that he doesn’t enjoy touching, close contact or really playing with her. Though I’m sure you can see how this is very difficult for a five year old to have to understand, and to follow through with. This is especially hard for her as she is basically the polar opposite of Dylan!

She wants to shower him with love and care. She wants to play with him 24/7, kiss and cuddle him and have in-depth conversations about what they are building with the Duplo blocks.. but she has slowly learnt that this isn’t going to get her very high up in Dylans popularity list. When he was building she used to go over and try and help and he would get frustrated at her and hit out, I always found this very hard to watch and explain to her over and over again. She wasn’t doing it out of badness, she just wanted to play and engage with her brother like she would other children. Whenever she then came anywhere near him he would hit out, try to bite her, scream etc at her.. and he still does now but not to anywhere near the same extent. They are both learning how each other work. She knows that if she goes and does something he can’t explain to her he is happy by himself so he will shout or do something else to show her, he has also learnt that not every time she walks past him or sits near that she is going to interrupt what he is doing.

I have seen huge progress between them recently, like all of a sudden they have clicked. They understand each other that little better and she understands why he is a little different and has accepted that she needs to treat him a little differently. Friday, was a huge moment for them. We came down in the morning when they had both awoken and Dylan was pottering about and Amellia was waking up and doing some drawing on her ipad.. when Dylan tottered over to her and sat up beside her all of his own accord. She then handed him her Ipad by choice and showed him what she was doing. She knows he really enjoys drawing so straight away he started to draw, he then took his little hand and placed it on hers. The squeal of delight out of Amellia was just magical. She didn’t want to move and declared this day to me as “The best day in her whole life” This is something that she has been waiting for, for a very long time!
img_4845They then sat like this for the next ten-fifteen minutes swapping whoevers hand was on top, while I melted with happiness for my little girl. This is the connection that she has been dying to get from her little brother since he was born and finally her dreams were coming true ❤
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I had seen that the friendship was growing rather steadily recently, like something had just clicked. She seemed to know when he didn’t want fussed over but was very quick to jump in when he was in a playful mood or was doing something she could do along side him! She did a lot of running about the house beside him before he would even acknowledge that she was there, but now he is looking for her when he starts running about, its magical.

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The other day they had lots of fun out on the trampoline together and Dylan got very upset when she got off, so she then got back on and bounced with him again! Then before she left she handed him a bit of chalk to draw with a zipped the trampoline up so he couldn’t get off by himself! This showed to me that she understood his cry was for her to come back, she then found something to distract him before she left and she also made sure her little brother was safe and couldn’t get hurt.

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This was on Thursday, she had gotten into the car beside him, and as you can see by her face, she is being careful not to touch him too much with her arm! He stayed a minute or two longer then was ready to depart and go back to the trampoline. His most favorite thing in the garden!

They are slowly working each other out, but today has been a big step in the right direction. I couldn’t be more proud of them both. When you have your sibling who understands you and supports you, it can really help you along.  ❤

WeeOhana xx

1

Questions!

With it  being Autism Awareness month I decided to ask on a page on Facebook that has many bloggers on it if they had any questions about Autism. Here are the questions I was asked and my answer! =]

Sophie from mamamei.co.uk has a little brother who has Aspergers and asks
are people still struggling to get a quick enough diagnosis? “
We are currently going through the diagnosis process and it is a very long and infuriating thing. When Dylan got seen at the CDC clinic we got told that it is autism but we have to wait till he is 2 1/2 before he can even be referred across to the autism clinic and then he will be put on another waiting list before he is seen, which is a very long list. The annoying thing about this is that if they had referred him when we were first there he wouldn’t have been seen until he was over 2 1/2 anyway.  It will then be a push to try to get him into a nursery that will be able to deal with his level of needs without a diagnosis. I know a few other parents who are going through a similar thing and are having to wait for an unacceptable amount of time. One lady had her child referred to the autism clinic at 2 1/2 and he is 3 1/2 now and she still hasn’t had a letter to start the process. So; I’m not getting my hopes up for a speedy one myself.
It is very irritating because they say early intervention is key to helping, but they don’t seem so keen to provide much help until they are over a certain age etc!

Claire from Http://lifeloveanddirtydishes.com asked; What did you notice about your child that made you seek a diagnosis?
There was several things with Dylan that made me want to seek a diagnosis. One of the main things was that he was talking for a while well he said 2/3 words then about a month later he lost them and all the word sounds that he made. He tip toe walked and still does the majority of the time. He also has very poor eye contact and will not respond to his name no matter how loud you shout it! I had worries about him for a while before anyone else would accept that I was in-fact right to be worried and that he needed to be checked out by the health visitor. Even when he was a young baby I raised a few concerns with my HV, like he didn’t smile or giggle for a very long time. I also as a mum remember feeling very upset because we didn’t seem to have that automatic bond people talk about. When you were feeding him his bottle he wouldn’t look at you lovingly etc! There are lots of things about Dylan that increase my worrying about him that I spot as the times go on. Mainly though I am very eager to try to get him talking or communicating in some way so that he can let me know what is upsetting him, what he wants or what is going on in his head! This would then in turn hopefully lessen the amount of melt downs we have in a day-to-day occurrence as he could then communicate.

Vicki from Www.tippytupps.com wanted to know;  “if you have other children, how do you balance out their needs so neither feel left out?”
This is something that I am really conscious about as I have a little girl who is five years old. I am always worried about her missing out on things because of his dislike for many things. Though me and my husband work hard to ensure that she gets to do the majority of things that she wants to do and that she gets days out just by herself so that she doesn’t have to worry about having to leave if he gets upset and that she gets all the attention. We take turns once a month where we will take her out for a full day and do whatever she wants to do, be it swimming, shopping, eating, going for a walk or anything that she thinks of! During the month if there is something that she wants to do that only takes a few hours for example swimming and my husband is off work, he will take her swimming while I go for a walk with Dylan or do something that he enjoys!

If you have any questions you would like answered drop them in the comments below and I will surely answer them for you on this blog =]

If you enjoy my blog and reading about what we are going through with Dylan and would like to read some other blogs similar here are a few;

Danielle Duggins – “I  write about experiences mostly – https://someonesmum.co.uk/category/autism/”

Ann Hickman- “I blog about how our family experiences the world.. often a differently to others http://www.rainbowsaretoobeautiful.com”

Victoria Hatton- “I write about autism too, my daughter has Asperger’s and I’m an Autism specialist teacher. I write both from a teacher and a mummy perspective: Teacher: https://www.mummytimestwo.com/…/navigating-autism-from…/ Mummy: https://www.mummytimestwo.com/…/moment-knew-daughter…/”

3

Go with the flow!

Recently with Dylan I have learned that you really have to go with whatever is working for him that day. If it isn’t something that desperately needs done that day, isn’t important, or I can wait until my husband is home then I simply won’t do it if its something that he won’t cope with. Some people may see this as a little odd, that I’m letting my son control a lot of my life, but in reality; why would I take him to do the grocery shopping when hes having a bad day, just for him to have a meltdown in the middle of the shop. Which means he is very distressed, people stare so I get upset, he gets more upset as I get worked up trying to calm him so we leave. So; why would I put either of us through that? This is why most of my shopping is done online, or when my husband is home!

Today a friend of mine had a go with the flow light-bulb moment! She is a hairdresser and has been meaning to come over to cut my little mans hair for a while, his hair is a very precious thing to him and like a lot of autistic children he finds it very difficult when it comes to haircut time! So, when I went to the yard today she was there too sorting out her horse and was chatting away to me while Dylan very happily played with the shavings when she had a brain wave.

We decided why not have a go at cutting Dylans hair while he is really happy and relaxed in a place that he loves! She headed of to her car to get her hairdressing scissors, water spray and comb! He loved the water spray and played with this for a while to get his fringe wet and get him used to her! After doing this for a while I sat him on my knee to make sure hands and fingers didn’t get in the way! She snipped away and he was happy enough for the first few snips then he started to notice what was going on! With a quick few more snips it was done and after a few minutes he was happy to restart playing in the shavings like nothing had happened! It was over so quickly and he didn’t get too worked up which lead to him happily enjoying being at the yard again in a very short space of time!

He then went on to eat some of the horses food (which to me is bizzare seeing as it is nearly impossible to get him to eat any other human food than what he has already accepted into his very small selection of food he will eat), help me fill the hay nets and empty the wheel barrow!

All in all it was a very successful day! Fringe Trim, feeling lots of different textures and a happy little soul spending time outside in the fresh air! =]

It all boils down to.. pick your battles! Pick what is worth battling over and if it isn’t and its going to make everyone unhappy. simply do it when you get a chance! =]img_4144

WeeOhana x

 

 

 

 

 

 

10

Our First Speech Therapy

Last week we went to Dylan’s first speech therapy, though it was a different lady who had seen him at the CDC clinic so it was a review for her to decide what she thought was the best plan of action! She has decided that he would really benefit from some joint therapy with the occupational therapist as well as the speech therapist at the same time. She hopes that this will start before Easter but can’t be too sure, so I have my fingers crossed that we hear sooner rather than later about it starting so that we can get cracking! She was a lovely lady and gave me some tips and things to try with him along with lots of advice which I am going to share with you all! =]

When we first went in she asked a few questions then played with him, tried to encourage him to do certain tasks and to see how he got on with all the things she had prepared for the day. She did a game with him which was putting some bean bags in a post box type thing, which he really loved. When this task was over and she put it away Dylan couldn’t handle it and went into full meltdown mode.. luckily enough my hubby had came along too so took him back to the car while I chatted with her about the best actions to take to encourage speech.

The first thing she told me shocked me, she said that she isn’t going to work on his speech for now.. it is all about his concentration, engagement, interacting and eye contact. To me I was a little taken back by this, but they have to be able to do these things before speech will come or speech therapy will really work for them! So I have lots of ways of trying to do this and have a long list of toys that I will need to purchase to help!

She also said that his depth perception is very bad, so to try and do lots of things that encourage climbing, pulling out chairs to sit on, and grabbing items off the floor. Lots of that sort of thing to help him, I wasn’t aware but apparently it is very common in autistic children!

The toys which she has advised me to get are lots of simple, easy toys. She said that it is better if he can very easily do the toy and it to have lots of parts. For example today I got him a ring stack. So I then sit, or even better lay on the floor with him while he is doing this he is doing this, and give him one ring at a time to put on, he then has to engage with me to get the next ring. Even if it is just him coming over and me giving him the ring, he is starting to learn that to get the things he wants/needs he has to engage with people! Another thing to do with the ring stack is that I put the part they go onto on top of the sofa and then bring him to the other side of the room with me and give him the first ring, he then has to climb on the sofa which is working on his depth perception and then come back to me get the next one etc!

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I got told as well when I am playing with him to spend a lot of the time laying on the floor behind what he is playing with, she said then that they will catch a glimps of your eyes and make very short eye contact now and then and hopefully will build up to longer periods of times! Unfortunately we have just had laminate flooring put down so it isn’t the comfiest, but needs must!

We also have been advised to buy a lot of different cause and effect toys, so that he learns when he does something it will have a reaction, and that when he wants something he has to do something to get it! I have got him a pop up toy for this, the kind where you turn the handle and a cow pops up, turn the other handle and a dog pops up etc!

To encourage him to interact with us we have been advised to only put a little bit of juice in his juice cup and get him to learn that he has to bring it to us to get more, so that way he will be engaging with us and getting what he wants back. If we only put a little bit of juice in it is then encouraging him to have to do it more often and get him used to it! Another way to encourage this is to teach him that the remote controller turns on the tv, so that when he wants the tv on he can bring us the remote and other things like that!

There are many other toys and things that she has told me to get for him, but I think he will be able to make do with what i bought until next pay day! Dam toys are expensive! >.<
Her main thing was that we keep the toys all easy and simple so that he can do them himself, doesn’t get frustrated at them and really enjoys them! Dylan is like a lot of other autistic children and likes lots of repetitive play, so if its something he can do easily over and over again without getting frustrated it is great! Especially if its working on his depth perception and even more so if he is having to engage too! =]

Here is what I ended up with today for Dylan! =]
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What cause and effect toys do your little ones enjoy?
WeeOhana xx