0

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

3

Sensory & Sleep Fail…

I decided that Dylan was doing so great with new feelings that I would jump right in and try something.. half cooked pasta.

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Poor little blighter dived right in, grabbed a handful then quickly threw it away in complete disgust ran out of the room and sat on the bottom step screaming until I moved it.. Bad mummy! I’ll not try that again for a while.. Think I’ll have to do it with dry pasta and adding in a bit of cooked pasta at a time!

I think this day though was always going to be a failure seeing as he had me up since 2:30am.. wide awake and dancing to the gummy bear song. If you have ever heard that song.. you will understand my pain. I was slowly losing the will.
I got through the day with a tin of monster providing me with the caffeine that I desperately needed to function!

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Thank you monster for getting me through this..

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

 

 

 

 

 

 

0

How To Make Your Own PECS!

The other night I made my own PECS (Picture Exchange Communication System) for Dylan!
There are several stages of PECS, for the moment Dylan is on stage one as he has just started using them! PECS is a form of communication that is used with lots of children on the autistic spectrum but can be used with other children too.It is where they learn to relate pictures to the items that they want.

I have seen lots of people who make these online and charge a fee for doing it then send them to you, I was very tempted to do this until I thought about how often I would need to order new ones as he got new interests, foods he likes etc. So I decided to have a crack at making my own and it really wasn’t that difficult! Took a little time to get all the things together and work it all out, but I did and I must say I’m pretty proud of myself with how they turned out =D So I am going to show you how I did it and what I used so you can make your own too! If you need any extra help/advice etc drop me a comment and I’ll be more than happy to help! =D

I already had a printer, which is the Epson Expression Home 322. I have had it for a while though so you may be better sourcing your own printer! Mine isn’t a very fancy printer but does all that I need and was a very friendly price! I then sourced a Laminator (Amazon.. my favorite place for finding everything I need/ want ;]) it wasn’t a fancy all dancing one, just one with good reviews and could do exactly what I wanted! (Click here to view it) Along with this I also ordered 100 Laminator pouches.. I’m not entirely sure why I ordered 100.. but when I see a good deal I can’t resist! ;] (Find them here) I then needed a paper-cutter as I wanted all the edges to be straight and nice! (This one!) and the last thing I ordered online was some Velcro! (Here) You will also need some paper and few bits of thicker paper too! =]

Now, I am going to try to do this in a step by step stages so it is easy and clear to follow! =] I’ll try and not waffle as we know I do get carried away sometimes! 😀

  1. To start I made lists of what I wanted to make PECS on. I started off by just doing two, Snacks and TV Programs then thought of nine of each that Dylan liked and wrote them down!
  2. Next I searched online for clear and simple versions of these images! I found when I searched to put the words “White Background” after whatever I was searching as it means they won’t get distracted by looking at the whole picture
  3. I then made a folder on my laptop for each PECS board and save the nine images of each topic into the correct folders
  4. After finding the nine images I then went into the folder and selected them all. You do this by left clicking once on the first image then holding shift and left clicking again on the last picture
  5. When they were all selected I then right clicked on the images and selected the option print, which opened a pop up.
  6. When in the pop up I scrolled down the side of it which gives you the options of how to print the pictures until I got to one called Wallet. This meant that all the pictures could be printed off on one sheet of paper and would all be the same size!
  7. Then I used the paper-cutter to cut them all out. This took a while for me as I liked to make sure they were all exactly the same size! Very simple to do though with the paper cutter recommended above as it has a built-in ruler! =D
  8. I then put them into a laminating sheet with a good distance between them so that they would all seal correctly and wouldn’t peel once laminated.
  9. Once the PECS images were done I left them to cool while I laminated the thicker paper that I would be using for the background!
  10. I then cut out the images again, making sure I didn’t go to close to the image as I didn’t want the laminate to peel off them!
  11. Next I stuck 6 of the Velcro dots onto the piece of thick paper all evenly spaced of course ;]
  12. In the middle of each of the PECS images I then stuck the other side of the velcro dots on. (I know I said nine but have only put six on the page, this is so that you can change them about, or remove some and put the other ones on when things aren’t available!)
  13. Admire your work and feel very pleased with yourself! You have just made some PECS for your child which will greatly improve communication and hopefully make meltdowns less often as your child has a way of telling you what they want when they get used to the PECS =D

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These are the ones that I did,and I would love to see the ones you have done! Especially if this step by step has helped you! =D
I wish you all the luck on your PECS journey! =]
Also remember if you have any questions on how to do this etc, Just ask! I’m more than happy to help!

WeeOhana xx

9

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

12

Why telling Siblings is important

This is something that I feel quite strongly about. It is because when I was younger it was never explained to me what was going on, why my brother was treated differently, why he had his outbursts or why he treated people the way he does. Obviously back then I was very upset, felt excluded and very confused but now when I look back on how I felt I feel extremely selfish. That I really missed out because of not having someone explain to me that was going on and why he was being treated differently etc. Between me and my brother there is only one year and 8 days so we were extremely close in age and we were very bonded. I love him dearly and always will, especially now that I understand his ADHD.

Therefor I have made very sure to keep Amellia involved and updated with what is happening with her little brother. She is extremely tuned in with him though, She spotted before us things he was doing or that he wasn’t doing that she thought he would be doing. One day she compared him to a friends child who has autism, and asked if he would always be like her. She also got incredibly worried whenever he wasn’t talking and started to ask us when he would start talking or be able to say her name or anything at all. This was when we decided it was time to tell her that things were slightly different with him and that we can’t  put a time on when he will start talking or if he ever will. We are pretty sure that he will talk because he makes lots of different noises and sounds etc, but it is hard for her seeing her friends with brothers and sisters around his age talking, running about, going swimming together etc.

Whenever we explained it to her we kept it nice and simple, that he would learn in his own time and that we would all have to make changes. We didn’t say too much too her as we don’t have an official diagnosis yet and we also didn’t want to say too much and confuse her. So we told her a few things and then let her ask whatever questions she had and told her that whenever she had any questions that she could just ask us. The next day she came up to us and made me so happy she told us “mummy I don’t mind if Dylan is different, I love him anyway.” I had to sneak off to have a cry, it was just wonderful  an incredible thing for a five year old to have said.

I think it is incredibly important to tell siblings, they will then understand why you have to make differences for them, why there has to be changes and why certain activities or things they enjoy just aren’t as easy to do anymore and why when telling them off it has to done differently and allowances have to be changed.

We are incredibly lucky parents to have such an understanding daughter. If we have to leave somewhere because he doesn’t like it she is perfectly ok with that (as much as I hurt for her) if she has to wait till another day to go to the park because he is having an off day she is ok with that, if he wakes her up in the middle of the night, shes ok with that too. she will come downstairs and lay with me until we get him sorted. She really doesn’t get enough credit for how wonderful she is. I always try and make sure she gets to do the things she wants to do even if it is in a few days time, and that she gets to spend 1:1 time with one of us as much as possible so that she can go to the park and can leave when she is ready, so that she can go swimming, so that she can be a child and forget everything that is going on at home that makes her life so different to a lot of her friends.

This is the reason why I will always keep her up to date with what is going on with Dylan, so that she can feel included along the way and so that she can have as big an understanding as she can about him.
Special needs does not just change the child’s life who is living with the special need it changes everyone’s in the family.

We are all still getting used to the changes, his quirks, dislikes and likes, but we are doing it together as a family. Learning as we all go. I don’t think there has been a more relevant time to reinstate what my blog name stands for; Ohana means family, and family means nobody gets left behind or forgotten.

WeeOhana xxx